Sjogrens & Me

Wow...it's been awhile!

2010-06-16T09:39:00.004-08:00

First, let me apologize for just wanting to quit. I didn't expect to ever feel this way. Me????? Depressed???? OH PLUUUUUease. Yeah, I have had some obstacles thrown my way, but I have always been a positive happy-go-lucky person.

But it did happen.

I questioned myself. I questioned life. I questioned God. I hated myself. I hated life. I hated God.

Why you ask? I don't know. If I did know it would help me make sense of the past year. It would be so easy to find someone....something....anything to blame. I hurt family, old friends, and even new friends.

People have told me that I have changed and they want the "old" Vicky back. I have been trying to find her and I have seen glimpses of her from time to time. However, the "old" Vicky is caught up....like in a cocoon....wrapping and shielding herself....and when she is totally able to break free....She will spread her wings proudly. Watch out world....I am coming back!

It has been too long!

2009-09-14T04:42:00.002-08:00

Hi to all my friends out there. It has been awhile since I last posted and I am sorry for that. I plan to get into the swing of things soon. I am doing good and still waiting for a transplant. :)

Canadian Guardian Angel..

2009-08-04T07:25:00.009-08:00

I have one. I really do. I don't even know her her by any other name but yrhelper.

Yrhelper is holding a tweetparty for me. It was kicked off today, my 38th birthday! She is holding a contest with prizes to be won. You must go to her blog . All her proceeds that she earns through Sept. 4, 2009 through her online shops will go to my NTAF account. (National Transplant Assistance Fund) She is also raising awareness for a possible living kidney donor for me.

She had seen a request made by my Mother-n-law Kathleen on her active rain blog . From what I understand is that she has a sister that has an autoimmune disease that was attacking her vital organs, but were able to stop it in time with medicine. Unfortunately, that is not my case and part of the reason why I blog about my disease. If I can help just one person to not get to the point that I am at...it is soooooo worth doing this blog!!

Yrhelper is on twitter...so follow her! Her blog is Rewards4Canada . She has great coupons and money saving ideas too.

I am asking you to reblog her post. Follow her on twitter and return her tweets for all to see. I can't believe my guardian angel is doing this. Again, I don't even know her name.

Amazing, huh?

I really don't know what else to say...I am speechless. (and for those who know me, that is hard to believe).

One thing I can say is....

THANK YOU Yrhelper!!

I also want to thank anyone who has helped me. I really appreciate it.

Home again...home again...jiggety JIG!

2009-07-31T07:42:00.003-08:00

I have made it home after 3 weeks in the hospital. I am tired and a bit overwhelmed at what has happened the past month....

I guess I am not as strong as I thought I was. It amazes me how you think you are chugging along just fine and then something bites you in the buttocks.

In a way it is scary, but I made it!!!

It is thought that I had a staph infection, but to be truthful I think it had something to do with Sjogrens. The Docs words were "WE THINK YOU HAD A STAPH INFECTION".

I really appreciate all the prayers and thoughts being sent my way. I will eventually get back to posting soon when my energy levels go up a bit more.

I am exhausted and just need to rest a bit.

Take Care!

hospital update

2009-07-24T03:16:00.003-08:00

Yes.....it is going on 2+ weeks in the hospital. The DVT became infected and needed to come out. I had surgery on the 15th. It is healing slowly.

My hemoglobin levels were 8.1 and I received a blood infusion. My hemoglobin is now in the mis 9's. I am still very tired.

I will get back on the posting soon when I feel like it. Thanks.
Vicky

who am i ???

2009-07-18T13:18:00.005-08:00

i have been here for 10 days.

i know all the nurses, doctors, and vampires on the first name basis.

i am going to get a blood infusion.

My morphine pump is my best friend.

Just an Update

2009-06-30T16:27:00.003-08:00

Well, still waiting to see if someone else will be tested at MUSC. I feel like I am on hold once again...playing the waiting game. I have been tired too, my Doc allowed me to get my procrit injection 6 days early. That helped.

I have an eye doctor appointment on Thursday. I have been having blurred and double vision lately. I think it happens more when my eyes are dry and tired. I think prescription eyedrops will be called for. I also need new glasses and definitely something for the sun!

I think I have said "I Think" a bunch of times in this post....enough about me!

What Sjogrens means to me....letter by letter

2009-06-22T14:11:00.003-08:00

S Scary at times
J Joint & muscle aches
O Other people out there...I am not alone
G Good days....& not so good days
R Renal failure
E Eyes feel like sand is always in them
N NOT going to beat me
S Stiffness through whole body

What does it mean to you?

Been Busy!!!

2009-06-17T14:23:00.002-08:00

I am one of two people in charge of this year's cancer survivor's fashion show at the hospital I work at. It is tomorrow afternoon and I am EXHAUSTED!!

I have had so much fun planning this for our fellow clients and friends. Cancer survivors are a strong bunch of people. I get some of my strength from them.

The theme is "Under the Sea" and we have a treat for all! From the music to a soloist who is a 4 year cancer survivor singing one of her own songs she composed for us. (She has CD's available....she is THAT GOOD) The decorations, party favors, refreshments, and the whole atmosphere is going to be FUN!

We are remembering 2 individuals I had the pleasure of meeting last year. They were such a strong inspiration to me, but lost their battle to cancer. They were models at last year's show and will be deeply missed this year.

I can't wait to see if we can pull an awesome experience for these amazing individuals!

Vitamin D3 and Kidneys

2009-06-13T17:49:00.005-08:00

I recently started taking vitamin D3 supplements. I decided to do my own research on what this means to the health of my kidneys. Here is my interpretation.

Vitamin D is available through the sun and in a few foods as well. It is actually a hormone. It is processed through the liver and given to the kidneys to be circulated through the blood for optimal health and strong bones. Our parathyroid gland release PTH to help stabilze the situation.

In early kidney failure, the kidney is not able to activate vitamin D. Not only that, but it becomes inefficient at excreting phosphate thus causing this to elevate in blood levels. It can eventually cause bones to become soft and bendable, robbing the body of the vitamin D it needs.

If calcitriol is started early in kidney failure, parathyroid levels may be kept low enough that calcium/phosphorus imbalance never becomes an issue. If it is started later in failure, it is helpful but may not be able to provide as good a response.

Maybe next time...

2009-06-11T14:12:00.004-08:00

I recieved a phone call this morning that Jordan will not be able to give me one of his kidneys. He only has one working and the other just isn't doing a thing. I am sure it was a surprise to him and his family....so please keep them in your prayers.

John and I can't thank Jordan and Jenny enough for trying to make this happen. Also, thank you to his extended family as well. Many people live fine with just one working kidney and have no problems whatsoever. Jordan will be one of them.

Jordan is still my hero...

Sorry...not been in a posting mood

2009-06-09T14:34:00.003-08:00

I am sorry about the lack of posts. I am anxious to get the results of MUSC on Jordan. He goes in tomorrow and Thursday for testing. I have been really tired lately too. My procrit was adjusted and I think the past 5 or 6 days have been like a blur. I need toothpicks to hold my eyelids up. :-)

The good news is that I get another round of procrit tonight, so I should have a burst of energy the next couple of days. Please say a extra prayer for Jordan, Jenny, and all their family the next few days. Please say a prayer that the transplant team can answer all their questions and address any concerns they may have. I am looking forward to hearing from the 2 of them tomorrow night.

I started taking vitamin D-3 last friday. Hence, another break down of my kidneys not performing correctly. I will have to do more research on renal failure and its association with having to supplement with vitamin D-3.

Let Me Introduce You To Jordan...

2009-06-04T14:52:00.010-08:00

Jordan is my match and potential donor. He is Jenny's husband. If you visit my other blog, you probably know that Jenny is a good friend and a co-worker of mine. BTW she is in her last trimester of pregnancy!

I met Jordan nearly 3 years ago. My first impression of him was that he was quiet, looked really young with that babyface of his, and very serious! LOL Now, I know that he loves to talk about computers, sports (especially the Clemson Tigers), loves his family, likes to have fun, and has a GOOD heart......and hopefully a good kidney too. ;-)

This is him with his daughter Suzi. He is a very patient,kind father to her.

And this is Jenny who is pregnant with their second daughter. I absolutely love this picture. (Hope you don't mind Jenny...your belly looks beautiful)

I plan on talking more about him and his family soon. It will be an interesting few months if all goes as planned. After a few blood tests, we found out that he is a match to me. He goes next week to be evaluated by MUSC for 2 days. They will check on his heart, lungs, kidneys, and be evaluated by transplant team in detail on his health. When he is done with MUSC, he probably will feel like a guinea pig....but to me he is a hero.

It Has Been Awhile!

2009-05-31T08:45:00.005-08:00

I have been busy since we got back from our little vacation. (a much needed or else I was going to go crazy vacation) Nolan was in his end of the school year play that the 4K performed. He was a rock star...and quite the "star" of the show I might add. Yes, I am a proud mommy! I can't believe he will be going to kindergarten in a few short months. Gah!

My blood work has come back and my creatinine is starting to creep back up a little. It was 2.8 this last month. Up from 2.6, but better than the 3's it has been in the past year or so!

I have been working on a small personal project of mine with my family to help raise money for the costs of transplant not covered by insurance for me and my living donor. We will be selling t-shirts to help raise organ donor awareness. I will post a pic of them as soon as they are done. I am excited and many others are as well!

Now....for the best news. I have a match for a living donor. So far, everything looks good as far as the cross matching, tissue typing, etc. He has to go to MUSC June 10-11. Please pray that all his tests come back that he his as healthy as a horse. :) Also, his family has a few concerns about organ donation, please pray that they find total peace with him being my hero. They support him, but are scared for him a bit....understandably. The concerns I have heard his family express are just "myths" and I think with educating them on living donors it will calm their fears a lot.

I will announce who it is as soon as I ask him and his family if I can blog more about it...specifically more about him! I would like to tell the world who my hero is. (even if it comes back he will not be able to donate to me)

Update Later This Weekend....

2009-05-29T18:17:00.000-08:00

and it will be good!

Ode To Procrit Injections & My Kidneys

2009-05-21T18:06:00.008-08:00

Oh procrit, you have helped me along the way,
Giving me enough energy to feel okay.
I guess you can say you have given me my life back,
even though your sting is like a bee attack!

Oh procrit, you help me make enough red blood cells,
Because my kidneys want to shut down & fail.
At times it is quite funny you see,
I have this love/hate relationship with thee!

Oh procrit, my kidneys would be lost without you,
I can't wait to get a transplant so that I may say adieu!

This Ode was brought to you by a very silly moment. I don't take responsibility for my mood swings. :) If you want serious information on what procrit injects have done for me...go here!

I'm BACK!

2009-05-19T15:32:00.005-08:00

We all had a great time and I will post more later this week!

EDIT: Go to 2lilpumpkins to see a small video of our vacayion.

I think I have been snickered...

2009-05-13T14:49:00.005-08:00

Yes, I have come to the conclusion that a skinny nurse has finagled with the scale I weigh in at my nephrologist's office. That piece of metal "claims" that I have gained 10 pounds the past 3 months. Gah!

I am suppose to be losing 10 pounds before transplant...not gain them. Oh and to top this all off...I was weighed right before our beach weekend. Nothing like an extra 10 pounds on this pudgy body already....now I get to prance around in a bathing suit with hopes of not scaring everyone. Gah!

So....I am going to lose this weight as soon as I get back next Tuesday. I need one last dinner before I execute my appetite...it is on death roll. (hehe get it? ya know the rolls most of us have). Ok...ok...I will see you all next week before I put another stupid line in this post.

Fun in the Sun

2009-05-09T10:41:00.005-08:00

Next week this time I will be giggling all the way down a water slide with my boys. Or perhaps sipping a frozen "adult" beverage while admiring the sound of the ocean. Maybe I will even be building sandcastles or collecting shells trying to see which one still holds a hermit crab. Regardless I will be the one with the SPF 50, movie-star sunglasses, and beach hat on. I can't wait.

Hubs and I were suppose to go away one night for our upcoming 9 year anniversary, instead we decided to make a long weekend of it and take the boys to the beach. We will be staying 3nights/4days at an oceanfront resort. (we got a fabulous price...my mother-n-law would be proud)

Here are some fun in the sun precautions to take if you have an autoimmune disease or on any medication that makes you sensitive to the sun.

*Make sure you have SPF30 or above on. Bath in it. I personally like to use my kids waterproof coppertone SPF50 and it blocks dangerous UV rays.

*Wear the "Audrey Hepburn" sunglasses. Protect your eyes or you will pay for it with the burning gritty sand feeling for days.

*Limit your sun exposure. Stay in the shade when you can or stay under an umbrella. Big sun hats can help a bit.

*Drink plenty of H20...if you have an "adult" beverage be sure your medicine won't cause a bad reaction.

*Wear a good chapstick or lip gloss so that you don't end up with dry cracked lips. I love burt's bees lip shimmer. It is a great chapstick with a hint of color.

*Shower immediately after you come in or at least rinse off at those outdoor showers provided to get the salt or chlorine off of your skin.

*Moisturize your skin. I love Caren lotion. It is a hand treatment, but it works great on the rest of the body too!

Here is another blog post from my friend Julia @ Reasonably Well

What do you do to prepare for a day or weekend for fun in the sun?

Update on my numbers..

2009-05-03T11:43:00.005-08:00

Well, actually it is on my kidney numbers. I am not due for a huge autoimmune work up until transplant or August...whichever comes first. The cellcept was working for the 4 months in a row according to the collected data for the Sjogrens. They continued to inch down. :) Hence why no new numbers there.

Are you ready for this??? My creatinine was 2.6 a couple weeks ago!!! I went from 3.5 in Jan 2009 to 2.6 april 2009. My BUN was 38, hematacrit 32.9, hemoglobin 11.3. Not too shabby. I have a Nephrologist appointment in a couple weeks and I am going to ask that when I get my monthly labs for them to be sure to double check that creatinine. A few people seem to think it could be a lab error, but I honestly feel good the past couple weeks. I told my hubs that prior to getting the results.

I have been told that my kidneys are too far damaged to save them and that it would be only a matter of time before dialysis. This past winter was rough and I thought it was knocking on my door...but I swear I feel good. 3 weeks ago I didn't have enough energy to even read to my boys, and now I have gone without taking a nap this past weekend. Woo-hoo!

If my labs are true, I can definitely feel the difference between 3.5/3.1 to 2.6 . My mom believes it is all the prayers I have been getting. I have hundreds praying for me...perhaps over a thousand. I thank you for all the prayers and keep them coming.

I was asked to spread the word for her...

2009-05-01T17:18:00.003-08:00

If you know someone who is interested in helping her, please contact Cindy Richards @ (205)939-6794. She is a CHILD who needs help!

13-year-old in need of kidney transplant
Published Sunday, March 29, 2009 on here

Shawl of hope: Karli Chadwick and her mom, Kellie, sit while being draped with the prayer shawl they were given from the Knit Knacks of Clanton First United Methodist Church.
Karli Chadwick is, for the most part, your typical young girl. Unfortunately right now, some of these things are on hold. For most of Karli’s life, she has been in and out of the hospital. Karli is 13 years old and in dire need of a kidney transplant.

The day before Karli was to be admitted to Children’s Hospital to have a port put in for dialysis, she and her mom met the “Knit Knacks” of Clanton First United Methodist Church. The Knit Knacks presented Karli’s mom, Kellie, with a prayer shawl and then prayed for both mother and daughter.

Christians throughout the community have been praying for Karli and her need for a kidney. If you think you might be interested in considering the possibility of being a kidney donor for Karli, you may call Children’s Hospital and talk with Transplant Coordinator Cindy Richards at (205) 939-6794.

In order to be a donor, you must be either A or O blood type, not being treated for high blood pressure, at least 18 years old, and have had no cancer for the past five years. The initial testing is very simple; you just call Children’s and tell Cindy Richards you would like to be tested for Karli Chadwick. You will be mailed a kit and can go to the local hospital for the blood work. Your blood work will be sent back, and in three weeks you will know whether or not you have passed the first screening process.

Karli’s mom, Kelly, can be reached via e-mail at kellynfamily6@aol.com.

Maybe you could be the donor Karli so desperately needs.

Raynaud's with Sjogrens

2009-04-27T18:16:00.006-08:00

Another condition I get associated to Sjogrens is Raynaud's Phenonemon. Again, it is not unusual to get this with any autoimmune disease. Women are affected nine times more than men.

Raynaud's is named for the French physician Maurice Raynaud, who first recognized the condition in 1862. The disease causes an interruption of blood flow to the fingers, toes, nose, and/or ears when a spasm occurs in the blood vessels of these areas. Spasms are caused by exposure to cold or emotional stress. Typically, the affected area turns white, then blue, then bright red over the course of the attack. There may be associated tingling, swelling, or painful throbbing. The attacks may last from minutes to hours.

I am lucky in that I get very mild cases of this from time to time. (mostly winters) On a couple occasions I have had the painful tingling and swelling go up my arms and into my facial area. This has happened when I was extremely stressed. Most of the time it consists of a few fingers throbbing, tingling, and turning a bluish white for a few minutes. This happens when I get cold.

Vasculitis

2009-04-23T14:18:00.016-08:00

One of my secondary conditions I occasionally get is called vasculitis. It is not unusual to get this with an autoimmune disease. There are many different types, but over all it is the inflammation of blood vessels. A good reference website is vasculitis foundation. Here is info on the type of vasculitis I was diagnosed with 2 years ago.

Henoch-Schönlein purpura (HSP) is a systemic vasculitis that causes the blood vessels in the skin to become inflamed, causing red spots. When the blood vessels in the skin get inflamed, they can bleed, causing a rash that is called purpura. This rash is typically seen on the lower legs or arms. The specific skin lesion is characterized by the tissue deposition of an immune system product, called IgA immunoglobulin, which is also found in kidneys of patients with a renal disease, called IgA nephropathy.

HSP occurs more often in children than in adults, and many cases follow an upper respiratory tract infection (infection in your sinuses and /or lungs). Half of affected children are under age five, although kidney involvement is more likely to be severe in older children. Compared to children, adults had more severe and frequent kidney involvement.

The first time I had this I was at work and kept thinking I had a never ending charlie horse in my legs. I finally pulled up my pants and saw the rash occurring. My co-worker's father had this one time and recognized it. I had 2 skin biopsies done to confirm. One was on my leg and the other on my belly. I have had a few mild outbreaks with it since then. (2 years ago) The worst was that first 2 months it happened. I am in remission with it, but if I can get a flare up anytime. It is normally treated with prednisone or another immune suppressant drug.

Transplant on my mind...

2009-04-21T15:05:00.003-08:00

I have the whole kidney transplant on my mind lately. It comes in phases. LOL I am having it done at MUSC The following is from their Transplant Center;

The Kidney Transplant program at MUSC performed the first kidney transplant in South Carolina over 30 years ago. Since its beginning in 1968, more than 2000 patients have received kidney transplants at MUSC.

Laparoscopic donor nephrectomy is an integral part of the kidney transplant program. This procedure allows kidney donors to recover faster with less pain, thus alleviating many of the roadblocks that hinder donation. This promising procedure has helped to increase the number of potential donors.

The kidney removal surgery is generally 3-4 hours long. The donor is usually discharged within 48 hours and complete recovery usually occurs in 2-3 weeks. The open surgery alternative can require up to 6-8 weeks of recovery time.

Kidney transplantation is available to adult and pediatric patients suffering with end-stage renal disease. Organs are procured from either cadaveric or living donors.

Following the kidney transplant procedure, the patient is monitored by a multidisciplinary team of specialist. The two non-functional kidneys are left in place. Sometimes dialysis is used post-operatively to assist the new kidney function. The patient is closely monitored, especially in the first three months. Up to 30 percent of patients experience signs of rejection. Medication is carefully adjusted and rejection is usually arrested. The patient is seen by the referring physician for long-term lab work and care. This helps reduce stress on the patient and family while promoting continuity of care.

a much needed absence

2009-04-19T07:27:00.002-08:00

I have been a bit exhausted the past week, but feeling better. I will jump back on the Sjogrens bandwagon soon. I am still waiting to hear if any of my living donors will be a match for me. Seems like it just drags on forever....

In the meantime....my other blog 2lilpumpkins has some cute pics of Easter and eventually today I'll post my 3 year old's birthday party.

Interesting Story

2009-04-13T15:19:00.003-08:00

I was working over on the cancer clinic side at work and they had a news conference about free screenings of cervical and breast cancer for women over 40 that could not afford health insurance. A lady had an interesting story I would like to share...

Her husband had fought in the Vietnam War and was a pilot. He flew many missions with no problems. On his 75th flight exactly he was flying over enemy land and was shot down. Luckily, he was able to escape the jet before it plummeted to the ground.

On the flip side, he was captured and was held a prisoner of war. After many months he was released and came back to his family in the USA.

About 4 1/2 years later after he served in Vietnam, he and his wife were on vacation in Florida eating dinner. A younger man came up to him and said "Captain X.....you are Captain X correct"?

He looked at him a bit baffled and said "Yes, I am. And you are"???

"Sir, I was the one that packed your parachute the day your jet was shot down".

They shook hands and greetings.

Her husband later thought about the whole incident and wondered how many times he passed that airman....didn't even look at him. Didn't care to....after all he was an officer. He made a promise that day no matter who came across his path he would always look them in the eye and smile. Everyone was somebody.

Maybe more of us should be that way....

Just a thought.

2 Great Gals In The UK!

2009-04-09T16:46:00.003-08:00

I have two blogs I follow from the UK. They are passionate about organ donation and are transplant recipients as well....just within the past year. Holly C. and Holly S. are amazing in their campaign and well worth the read. Go check them out!

When your sick with a cold

2009-04-07T15:44:00.004-08:00

or bronchitis or a sinus infection or any other junk that involves boogies and/or cough....it is a real pain!

Yes, I am whining....I am in that whining mood. I have bronchitis and when you have SS it seems to be a bit worse. Everything is dry to begin with and when you get a cold it is an automatic that it will turn into a sinus infection or bronchitis.

On a good note I finally have a family doctor. I know that I should have one, but when you see so many specialists and work for a hospital that provides free care for minor illnesses...who needs one?

ME! No one wants to touch me with all my problems as far as the LPN I can see for colds and stuff for free at the hospital. And the specialists don't want to be bothered with the small stuff.

I liked my family doctor. She seems real and easy to talk to. She was ordinary looking and was about my size.....which is not perfect. LOL

Amazingly, she seemed to know a bit about Sjogrens.

Yes, I have a family doctor! Woo-hoo!

Sorry for the rambling...I'll blame the robotussin with codine.

April is.....

2009-04-03T17:08:00.004-08:00

Sjogrens Syndrome Awareness Month! Go here or here if you want to learn more information on what SS really is. Sjogren's World will really tell the truth of what it feels like to have this autoimmune disease and how it affects their loved ones. Especially the message boards.....it will open your eyes. Truly.

If you learn anything this day...month...or even year for some. Learn about this disease and help it become more relevant. Knowledge is power and we definitely need more knowledge with this autoimmune disease.

Fortunately, a few of the more popular shows have run Sjogrens episodes like House or Mysterious Diagnosis just in the past 6 months. Both protrayed Sjogrens pretty well although how they said to treat was just the icing on the cake.

What Does It Feel Like To Have Sjogrens?

2009-03-30T15:24:00.005-08:00

I get asked this a good bit, because on the outside I don't look sick. I hate to say that I am "sick", but in reality....I am.

Sometimes I sit back and want to scream "THIS SUCKS, I AM ON THE DAMN KIDNEY TRANSPLANT LIST BECAUSE OF SJOGRENS"! *sigh*

But I can't change what has happened to me. I can't make the decision to break it like a bad habit.

I can only make the decision to be positive and accept the things I can not change.

So, what does it feel like to have Sjogrens?

The best way I can describe is it is like the feeling you get when you come down with the flu. Your body aches and you are exhausted ....now imagine that everyday....24/7. You get use to it and some days are better than others.

The worst is the fatigue, but as I said before Chronic Kidney Disease can make you feel the same way. Weak muscles, fatigue, shortness of breath, and a general feeling like you are coming down with something.

What are some of your symptoms? What is the hardesr for you?

I am waiting for my trip

2009-03-27T15:37:00.005-08:00

I need to pack my suitcase.
For my trip.
A trip one day....
hopefully soon.

It is the suitcase that needs to be packed with the essentials for when I get the call from MUSC in Charleston. If I get a call today...or even tonight...I'm screwed! I have only a tube of toothpaste in that suitcase. At least my teeth will be cared for.

I need to add some comfy spring/summer clothes, waterless shampoo (anyone suggest a good one because there will be no showers after transplant for a bit-ugh!) A few undies and 2 designer hospital gowns.

Yep, that's right. Designer hospital gowns. The same ones Jennifer Lopez had when she delivered her twins. I don't want to look like Shrek after the transplant and I got them for 75% off at work. After all they claim studies show that when you look better...you feel better and heal faster. Am I gullible? Probably...but I will be gullible in style!

I think I'll pack Mama Mia with a portable DVD player to watch. I love that movie and as they wheel me in for surgery I think I'll sing "Take A Chance On Me"!

I can't wait to see the look on their faces!

SSA and SSB antibodies

2009-03-24T14:35:00.003-08:00

I have a hard time trying to figure out what these little three letter words mean in the scope of bloodwork for Sjogrens patients. I have been doing a bit of research and my conclusion is this:

Antibodies SSA and SSB complexes are found in the circulation of patients with Sjogrens's syndrome, mainly in those with the primary form of the syndrome. Their presence is associated with long disease duration, earlier disease onset, parotid gland enlargement, systemic manifestations and also with hypergammaglobulinemia, rheumatoid factors and monoclonal type II cryoglobulins. While anti-Ro (SSA) antibodies are not specific for SS, anti-La (SSB) antibodies seem to be specific. However, a few patients diagnosed with SS do not necessarily test positive with SSA and SSB. Does this mean that SS has not been around as long for them?

Confusing?? yep!

John Hopkins Lupus Center describes them this way...

Anti-Ro/SSA and Anti-La/SSB Antibodies
October 15, 2008

Anti-Ro/SSA and Anti-La/SSB are antibodies found mostly in people with systemic lupus (30-40%) and primary Sjogren’s syndrome. They are also commonly found in people with lupus who have tested negative for anti-nuclear antibodies. Anti-Ro and anti-La can also be found in other rheumatic diseases, such as systemic sclerosis, rheumatoid arthritis, and polymyositis, and are present in low titers in about 15% of healthy individuals. These antibodies are not highly specific for systemic lupus, but they are associated with certain conditions, including extreme sun sensitivity, a clinical subset of lupus called subacute cutaneous lupus erythematosus (SCLE), and a lupus-like syndrome associated with a genetic deficiency of a substance called complement, a system of proteins that helps mediate your body’s immune response. In addition, babies of mothers with anti-Ro and anti-La antibodies are at an increased risk of neonatal lupus, an uncommon condition that produces a temporary rash and can lead to congenital heart block. Therefore, women with lupus who wish to become pregnant should be tested for these antibodies.

I know with my last pregnancy I my SSA & SSB was monitored greatly and I had 29 ultrasounds with them looking at Braydon's heart to be sure it was developing properly. God answered our prayers and he has a perfect little heart. SO does my oldest.

Do you know anything else about these two antibodies?

Joyride with training wheels...

2009-03-18T14:45:00.003-08:00

Fingers are clenched. I have that nervous yet excited feeling in the pit of my stomach. I finally made it up that huge first upward climb in this transplant roller coaster....you know the one that starts off climbing ever so slowly...and then it starts the big ride of a lifetime.

I yell at the top of my lungs making every face imaginable...I smile...I frown...I even laugh.

YES, it is official I am "active" on the transplant list! I have been listed as "inactive" the past 3 1/2 months. I am happy to report that the cocktail of drugs to get me prepared for transplant has worked in bringing my ANA titer down along with some other numbers.

And yes....I will have many ups and downs like a rollercoaster the next few months...perhaps years. BUT look...I have my training wheels on and my helmet is fastened on my head. Tee-Hee

Want to join my joyride??

Fingers just a tappin...

2009-03-15T13:05:00.004-08:00

I still have not heard if I have been moved to the active list yet. I know that as soon as I am, testing will continue with the live donors. I need to get in touch with my living donor coordinator. I want to know if my insurance will only test one living donor at a time with all the blood matching or will they do multiple donors at once? I really am starting to get anxious. I just want to move on and get this done. At least know the ball is rolling....it would be great to set up a transplant date for this late spring/summer.

Enough about my LITTLE worries. I have a friend named Pam who is undergoing 4 to 5 heart bypasses tomorrow. She had a kidney transplant a little over a year ago and we want her kidney and heart to rebound fast. Please pray for her. She has helped me so much with the questions pertaining to kidney transplant.

Introducing Bob

2009-03-11T16:44:00.007-08:00

Here is a great blog about organ donor awareness and transplantation. It is called Bob's New Heart He is fabulous with writing about the latest news in the organ donation/transplant forum. Definitely worth the visit to his site. The entire following entry is his latest post. Admittingly, I am having a dry spell with the writing on here. LOL All is well and still just waiting for the final word of being listed as "active" on the transplant list vs. "inactive".

The month of March is National Kidney Month and March 12, 2009 is World Kidney Day. These dates are significant because they mark the beginning of a commitment by the National Kidney Foundation (NKF) to “End the Wait” for a kidney transplant in the United States in the next decade. This effort needs and deserves your support. Thousands of lives depend on it. At this very moment nearly 80,000 of the 101,000 people on the national transplant list are waiting for kidneys, many of them will die waiting.

There are two sources for kidneys, 1) living donors and 2) deceased donors. While only about half of all donated kidneys come from living donors medical evidence indicates better outcomes for recipients of these life saving gifts. It is also noted that if a living donor lives a healthy lifestyle he/she can have a normal lifespan with just one kidney.

I’m going to let the NKF speak for itself in this blog. I will offer little comment other than to say the organization has committed itself to developing almost every avenue to increase the number of kidneys available for transplant. They have wisely avoided addressing the issue of paying donors for their organs. I will do that in a future blog.

In essence, NKF is advocating a multi-faceted collaborative initiative. What follows are excerpts from that initiative. http://www.kidney.org/news/end_the_wait/index.cfm

“Rather than focusing on single issue tactics, these broad based actions will achieve the common goal that everyone agrees on – ending the wait for a transplant. It uses proven and tested strategies, each of which is already successful in some areas and which should now be implemented everywhere. (The full list of NKF’s Recommendations is attached and is available on the NKF website www.kidney.org)

We can improve the outcome of first transplants, reducing the need for a return to the waiting list.
We should pay for immunosuppressive drugs for the life of the recipient.
The loss of a transplant is one of the leading reasons for starting dialysis. Reducing that problem will make more kidneys available.
We can improve the health of recipients, transplant them earlier when their condition is better, educate them about their options and ask them sooner, “Do you have a donor?”
We can also increase the number of organs available from deceased donors.
We can improve the care of donor families in hospitals and support them while they are with their loved one.
We can increase the use of proven techniques such as extended criteria donors and donation after cardiac death throughout the country.
And, we can make sure that donor families don’t incur any additional costs because of the donation, including extra funeral costs.
Increasing the number of living donors is vital to meeting our goal.

Living donors and potential donors should receive state-of-the-art care and never suffer financially because of their donation.
We can cover all the costs of donation, including lost wages.
We can track donor outcomes and make sure they have health care coverage and life insurance for anything that happens related to the donation.
And, a program of matched donation should be available throughout the United States.
Living donors and potential donors are our constituents, too. NKF will establish a Living Donor Council to support their needs. They should always have the best information about the donation process to help them make decisions that are right for them.

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We also can improve the American system of organ donation and transplantation. Many challenges are resource-based. We can increase the number and skills of people working in transplant programs nationwide to reduce the time it takes to complete the living donation process. All potential living donors should have access to laparoscopic nephrectomy.

Summary

This can be done. It won’t be easy but the goal is worth the effort. We can End The Wait! We can leave existing laws as they are and write new ones that address the whole problem. We can have a dramatic impact on the health of all our patients and our country.

The National Kidney Foundation will commit itself to leading the effort. If the community responds and reaches above individual priorities and single issues, the goal can be met. The challenges are many and the work will be hard. But, it’s the only way to do what our patients need us to do: END THE WAIT!”

Please comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be a donor you may have saved or affected 50 lives.

Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com. Also…visit and join my Facebook site, Organ Transplant Patients, Friends and You at http://tinyurl.com/225cfh OR — my Facebook home page http://www.facebook.com/home.php

A bit on the tired side

2009-03-03T05:13:00.002-09:00

I am having a few days of being fatigued. I think this it is mixed with laziness. Sometimes I wonder if I am being flat out lazy or if I really am exhausted.

Is there a difference? Yes, I think there is most of the time....but every once in awhile I feel it is a strange combination of both. I feel that right now.

Do I listen to my heart and rest?

Do I listen to my head and know that if I just get going I will be ok? (for the time being)

It is a tricky situation. Anyone that has an autoimmune disease or CKD knows what I am talking about. I feel guilty if I listen to my heart. I have responsibilities like my awesome children, great job, and loving husband. If I listened to my head I may pay for it dearly the next few days.

I guess I will compromise with myself.....it is a never ending battle.

Introduction To Kidney Disease

2009-02-24T16:11:00.005-09:00

I had answered an interesting question earlier today. Not once, but twice.

"Why don't doctors clean out a person's kidney with special instruments? Get in all the nooks and crannies so that the kidney will work"?

Well, I wish it was that simple.

Kidneys that are failing have scars. Irreversible scars. Once a kidney is damaged you can not get that kidney function back. Kidneys do much more than filter urine. They get rid of the toxins in our blood that we build up in our body such as CO2. They help produce red blood cells so we can have oxygen flow through our body. If it wasn't for our kidneys the rest of the organs in our body would die from being poisoned. This is just the icing on the cake.

Chronic kidney failure is not caused by an obstruction. Acute renal failure can be caused by a kidney stone blocking the ureter into the bladder. That can be reversed by surgery or lithotripsy. Chronic Renal Failure is usuaslly caused by an underlying disease such as diabetes, hypertension, PKD, or autoimmune diseases to name a few. Mine was caused by Sjogren's Syndrome with a heavy impact of renal tubular acidosis.

Renal tubular acidosis (RTA) is a medical condition that involves an accumulation of acid in the body due to a failure of the kidneys to appropriately acidify the urine.[1] When blood is filtered by the kidney, the filtrate passes through the tubules of the nephron, allowing for exchange of salts, acid equivalents, and other solutes before it drains into the bladder as urine. The metabolic acidosis that results from RTA may be caused either by failure to recover sufficient (alkaline) bicarbonate ions from the filtrate in the early portion of the nephron (proximal tubule) or by insufficient secretion of (acid) hydrogen ions into the latter portions of the nephron (distal tubule). Although a metabolic acidosis also occurs in those with renal insufficiency, the term RTA is reserved for individuals with poor urinary acidification in otherwise well-functioning kidneys. Several different types of RTA exist, which all have different syndromes and different causes.

That concludes your class to Introduction to Kidney Disease. :)

Can Transplant Recipients Take Characteristics From Their Donors???

2009-02-18T17:28:00.004-09:00

Hmmmm.....very strange, but fascinating. Seems to happen with heart transplant survivors. Check out this link. What do you think?

Why I Do What I Do....

2009-02-15T13:44:00.002-09:00

These are my 2 lil pumpkins about 2 years ago. Unknown to me at this time my kidneys were really going down hill. I knew I had sjogrens, but I didn't know it was attacking my kidneys to the point I would need a kidney transplant.

I will be starting 1000 units of vitamin D a day as soon as I get myself to the drugstore. My procrit injections are back to every 2 weeks for the time being. My husband wants me to ask if we can do it every 10 days. It seems every 2 weeks is too long and every week is too soon. No iron supplements right now.

I had a 12th person come forward to be tested as a donor for me. :) I think maybe 1/2 of the 12 that came forward will get past the initial strict health questionaire. Thank you to all 12 that have come forward!!

AAAACHHHOOOOO!

2009-02-10T06:32:00.000-09:00

This is me...well it would be me if I was a man....Ohhhh you get the picture!

I feel like I have had an 8 week cold. Just when I think I am better....my nose starts feeling funny and my throat gets scratchy. Shheesh! Will it ever end? No fever.....just that annoying raw nose.

I have my follow up tomorrow with the nephrologist. I will see about my iron and vitamin D. Apparently, they are not too concerned about it since they received my labs nearly 2 weeks ago.

Any remedies out there to get rid of a cold? Thanks!

Light At The End Of The Tunnel??

2009-02-05T14:23:00.000-09:00

Well.....I received some pretty good news from MUSC yesterday. It is official....I respond well to cellcept for my Sjogrens Syndrome. Of course this is used in larger doses after transplant and not exactly FDA approved for autoimmune diseases. I will go from being "inactive" to being "active" on the kidney transplant list. Long story short...I was accumulating points, but was overlooked for a possible kidney if a match was to come up. Also, on a side note....I really believe if I started taking cellcept a 2 or 3 years ago I wouldn't be facing kidney transplant...at least not this soon....just my opinion.

My living donor coordinator will be moving more aggressively getting the work ups on my "heroes" that have come forward. I could have a new kidney next month if I have a match!!

Speaking of heroes....My friend Kelly at Boodas Business is getting her campaign underway to raise money for medical costs not covered by my insurance. She is my good friend who will shave her head if $2000.00 is raised by April 15, 2009. I will keep you updated....should be interesting!!

The Vampire Results Are In...

2009-02-02T05:13:00.000-09:00

I had bloodwork done last week and here are the latest set of numbers. (Sorry, I like to put them on here because it helps me have a place that I write them down and not lose them).

Sjogren's numbers...
RA 127.8 (still high, but better than last month and definitely better than the over 2000 a couple months ago) ANA TITER 1:320 (same as last month)
SSA 453 (High, but improving over last month)
SSB 578 (Again high, but slightly better than last month)

Kidney numbers...
Creatinine 3.1 (Woo-hoo, a little better)
BUN 38 (same as always)
GFR 17 (isty bitsy better than last month)
My Potassium, sodium, and phosphorus are all in normal ranges thanks to the renal diet!!! No Fluid restrictions...thank goodness.

Hemoglobin 11.6 (MUCH better than last month)
Hemacrit 34.6 (MUCH better than last month)

Now for the interesting numbers....
Iron 35 (LOW)
Iron Saturation 9 (Very LOW)
Vitamin D-Hydroxy 17.8 (Very Low)

I am researching why these are low and I know it has something to do with my kidney function. The procrit is making red blood cells for me, but if my iron is low the procrit won't work properly....HENCE WHY I AM STILL SO TIRED!!! Not sure what's up with the vitamiin D...I just know it is common in ESRD. I guess I'll do some research, talk to my doctors about it and have some new material to write about on here.

Deal Or No Deal...

2009-01-27T04:39:00.000-09:00

I am in a crappy mood. I need to vent....

I can deal with the 9 tubes of blood taken every month. I can even deal with the actual discomfort I have been in. I can't deal with it affecting my mood.

I can deal with the double or should I say triple fatigue whammy of anemia, end stage renal disease, and sjogrens. I can deal with the weekly injections of procrit. I can't deal with me not even wanting to read a book to my two little boys.

I can deal with joint stiffness. I can deal with when I walk down a hallway.... everyone else walks twice as fast. I can't deal with me being snappy at my two little boys in the morning because mommy is just exhausted.

I can deal with working a 40 hour work week. I can deal with even working a little extra when needed. I just can't deal with it affecting my mood.

Normally, I think I handle the stress of it well. Yes, there are times I am so tired I spend a good deal just sleeping. I don't need comments like "Get out of the bed", "Do I need to take you to the hospital", or the best one....."Are you dying"?

So hear this people......I THINK I DO PRETTY DAMN GOOD CONSIDERING WHAT DECK OF CARDS I HOLD. YES, I may be in a slump but I am sure my bloodwork I got today will back that up. I am hoping that the numbers will continue to be improving. I know that my anemia is still out of wack and hopefully it will get fixed this month....until then I am going to take that extra breath in the morning and put on my patience hat for my two little beautiful boys.

I had a blast this past weekend...

2009-01-21T11:18:00.000-09:00

Ok...a break from all the medical blogging! My hubs and I went to Atlanta this past weekend WITHOUT the kids. It was nice. I had won tickets to Celine Dion. I'll admit she is not someone I would ever buy tickets to see, but it was awesome and we loved it! We also saw the King Tut Exhibit. That was cool to see real artifacts from THE TUT himself!

We also ate at one of my favorite restaurants called Maggianos. I LOVE good Italian food. YUM!

Sometimes it is nice to take a break from everything...

EYE...Chihuahua

2009-01-15T09:49:00.000-09:00

My eyes are not being nice. I finally got my drool back and now my eyes are dry. They hurt and look like I have one heck of a hangover.

Dry eyes are one of the most common symptoms of Sjogren's syndrome. With this symptom, eyes may be red and burn and itch. I feel like I have sand in my eyes. Also, vision may be blurry and bright lights are bothersome.

The Sjogren's foundation has a good write up on dry eyes. Check it out. It is worth the read!

How Vicky Got Her Drool Back...

2009-01-12T05:59:00.000-09:00

I had forgotten what it felt like to wake with a damp pillow. I know...GROSS! But...hey...we all do it. (especially during a stuffy nose and cough that won't go away)

One of the most common signs of Sjogrens is a dry mouth. Here is an interesting link to dry mouth and Sjogrens. It also points out the following;

Dry mouth can be a sign of certain diseases or conditions, such as Sjogren's syndrome.

Dry mouth can cause difficulties in tasting, chewing, swallowing, and speaking.

Dry mouth can increase your chance of developing dental decay and other mouth infections.

Dry mouth can be caused by certain drugs or medical treatments.

I would say the second one has been the worse for me at this point. I have to make sure I have a gallon of water to get a biscuit down without choking. The best way I can describe it is when you take a big spoon of peanut butter and try to swallow it. It is hard and almost next to impossible....welcome to my world. Or at least what was my world for quite awhile. I am on cellcept right now and the drool has returned. Gladly I might add.

Cellcept is an autoimmune suppressant drug normally used after a transplant. It is being used for the treatment in autoimmune dieseases at times but as my friend Maria at My Life Works Today points out ...

"One thing I did find is that the FDA is resisting approving it due to the possibility of it triggering a virus (JC) in our bodies that resembles a disease something like MS (progressive multifocal leukoencephalopathy or PML). Here's the link: http://tinyurl.com/4dog5r The incidences of this have been small and I have had no indication of problems. There's a risk with everything and Cellcept has been a lifesaver".

Maria and myself are responding well to cellcept. It is keeping her kidneys and Lupus at bay. It is helping me prepare for transplant and it is how I got my drool back!

MUSC Update

2009-01-06T04:38:00.000-09:00

MUSC confirmed that the Cellcept is working! I am to stay on it for 2 more months at the same dose of 500 mg. twice a day. They also said that they will be "working up" my live donor heroes. Hopefully, out of the 11 names I gave them, someone will be a match. I think my sister has a good chance. She had to lose a little weight before they considered her and now she almost there.

They want to get everything ready so that maybe....just maybe...I'll have a new kidney by summer! My creatine went from 3.1 to 3.5 this last month too. I was holding steady at 3.1 for over 6 months.

Sometimes I wonder if I am getting this transplant too soon. Last summer they gave me 2 years before I would be on dialysis. (although they said they were just guessing from how fast my numbers were going down) THe chances of a better outcome is not being on dialysis at all before transplant. Dialysis takes a lot out of people.

My main objective is too push dialysis out of the picture....I don't want anything to do with it. It scares the hell out of me. I know that the chances of it being in my future down the road will probably be inevitable. I hold on to that small thread of hope that when I get my new kidney it will work for at least 15-20 years. Maybe by then they can grow a kidney for me??? Medical technology is growing by leaps and bounds.

At least my organ that needs replacing can live off of a machine for a few years. I am in much better shape than others needing a heart, lung, or liver. I pray for these people.

What a way to bring in the New Year....

2009-01-05T08:35:00.000-09:00

If you want a peek at what Hubs, my 2 boys, and I did New Year's Eve... sneak over to 2lilpumpkins .

I woke up to Braydon (my youngest) being sick New Year's Day. That child won't take anything for medicine. I had to force 1 tsp. of children's motrin down his mouth to bring his fever down...I was praying he wouldn't gag and throw it up on me. I decided I would cuddle him that day and stay in my PJ's too. We watched my Clemson Tigers lose to Nebraska in the Gator Bowl. *SIGH* At least my parents were in Jacksonville having fun...or so I thought.

I get a call at work on Friday from my mom saying that she and dad made it back, but she thought she got food poisoning and was going to bed. My hubs calls and says that my dad is taking my mom to the ER. At least Braydon was feeling better and wreaking havoc on my husband.

They admitted mom into the hospital with pneumonia and blood in her stools Friday night. Apparently she had a double whammy of Gastritis and pneumonia. She got to go home yesterday and is resting.

Oh...and my grandma has pneumonia too, but is home resting as well.

The funny thing is that I was the one that was checked twice a week for pneumonia while being sick the past month. I just have a nagging cough that has decided to take up a permanant residency with me.

Don't feel bad for me....I am sitting here with a bowl of chocolate ice cream dipping choclate cookies in it! LOL PLUS...I get another procrit injection tonight.

YES....I am taking a small "cheat" from the renal diet...I need it!

Another Update on Sjogrens and Kidney Lab Work

2008-12-30T12:14:00.000-09:00

First, I believe the cellcept is bringing my sjogren titers down. I will hear back from MUSC next week on my course of action. I think they will want to increase my dosage. My ANA titer went from 1:1280 to 1:320 ....Pretty good! My Rhuematoid factor was over 2200 and now it stands at 225.8. SSA is 709 SSB is 874. I am not sure what these were previously. Everything is still high, but better!

Now....my hemoglobin is down to 10.0 and my hemacrit is 29.8. LOW!! So my procrit injections are back to once a week. I am dragging my butt from lack of energy. This is why I hav not posted as much lately. I know I will feel better in 2 or so weeks. They are checking my iron levels in 4 weeks too...I may also have to supplement the procrit injections with iron.

Merry Christmas!

2008-12-23T07:09:00.000-09:00

Just want to write a quick note. I had blood work drawn today and should know my numbers by next week. I have an appointment the 29th. I am laying low and trying to save up some energy for the holidays.(I am going on three weeks with this awful cold and cough) I'll post next week about what I find out at the appointment. Until then....

Have a Blessed Christmas!

Hair Today...Gone Tomorrow!

2008-12-17T07:20:00.000-09:00

Kelly and Vicky at our Annual Teddy Bear Clinic

My friend Kelly on the left has decided to come up with her own fundraiser for me...

It is one that I honestly tried to talk her out of...

BUT she has decided since she can't give me a kidney because of medical reasons...

She will give me her hair!!

That is right. If she raises at least $2000 from our co-workers, she will shave her hair off!

Actually she will cut it first and donate her hair to Locks of Love and then shave the rest of it off for me.

What a giving, caring, selfless friend I have. I am proud to be her friend!

May I borrow your voice??

2008-12-15T04:48:00.000-09:00

I have no voice...Laryngitis. Is that how you spell it? This cold has kicked my butt. I feel a little better today.

I received my "congratulations" letter from MUSC stating that I am on the transplant list. One more thing to check off my list. I think the cellcept is working. I get blood work on the 22nd to check my levels. I have still been tired, but I think it is because of the holidays. It is a different kind of tired when it is Sjogrens and I have noticed the past week that I am not aching. I have not had to take any pain pills since last Tuesday. This is why I think the cellcept is starting to work and bring my ANA titer down. My procrit Injection is tomorrow too, so that will boost me up for a few days!

My Head Feels Like It Has Helium In It!

2008-12-08T10:20:00.000-09:00

I think I have a cold.... and it stinks....I went to be looked at because of the Cellcept I am on. I have to watch for fever, chest congestion, wheezing, or BIG sinus problems.

Sorry, I don't feel like blogging much today. I am tired.

I'll stop with the pity party now...

Good News...my sister's fundraiser at SAIC raised over $1400.00 for medical expenses not covered by insurance for me. I am VERY grateful for all the kind and generous people that helped put this together. It makes me cry...and the way my head feels right now....I don't want to do that!

Take Care!

I am in tears of thankfulness...

2008-12-04T07:53:00.000-09:00

I was going to wait to blog about this, but it can't wait. SAIC in Tennessee (where my sister Crystal works) is doing a silent bake auction for me today in their lobby of their building. First of all....35 people signed up for this to donate and/or volunteer their time to bake for this.

This fundraiser will go to medical expenses not covered by my insurances. Originally, I was more scared about the financials of my transplant vs. actually having a transplant. My family and friends have told me not to worry about the financials.....we will find a way.

I plan on doing a large post on this with more pictures. I have that lump in my throat you get when you see someone doing good for someone else. My eyes are fighting back the tears.

Thank you SAIC.

Sites that help me... & update

2008-12-04T04:36:00.000-09:00

I thought I would mention a few of my favorite blogs or websites I like to frequent. All of them on my sidebar are great, but these are my favorites!

Julia at Reasonably Well has a great blog about living with Sjogrens Syndrome. She combines her knowledge with wit and humor. What I like particularly about her style is that what I "try" to write...she does it with ease.

Also Sjogrens World is a great tool for asking any question related to Sjogrens or other autoimmune diseases. It has helped me tremendously and there is always a friendly person there to pick you up when you need it.

Now for the renal problems I enjoy Pam's blog Waiting for Transplant . She had a kidney transplant earlier this year and has loads of good info that is compassionate.

I also like The Adventures of Stacy without an "E" , but I must warn you he is not all lollipops and puppy dog tails. He combines a witty sarcastic view of being on a kidney transplant list while going through dialysis. He writes what he feels...the good and the bad.

~~~Now as far as an update~~~

I received letters from my primary and secondary insurance that I am pre-approved for kidney transplant. They deem it medically necessary. It may not sound like a lot, but that is one less thing to worry about.

I am on week 2 of Cellcept. I haven't had any serious side effects with the low dosage I am on. The tricky part is to take it with an empty stomach. I do think at times my stomach turns for a couple minutes after taking it, but other than that I can't complain.

And can I say once again....THANK YOU GOD and the creators of procrit. I had my injection this past Tuesday and I do feel less fatigued. I take it every 2 weeks now....but I may go back to once a week after the next set of blood work. I think I need it once a week again.

I am T-I-R-E-D!

2008-12-01T06:46:00.000-09:00

Yes, I am dragging butt right now. I am not sure if I should blame the Sjogrens or the End Stage Renal Disease. I do know that I can partially blame the holidays.

My Mom, Dad, and Sister did most of the cooking Thanksgiving. I did do a yummy pineapple casserole....and I helped with the clean up too.

I had to work a LONG day Friday at work. My mom and sister brought me lunch. :) I then met my hubs and boys over at my parents house to put up the Christmas Tree and eat left overs.

Saturday, I stayed in my PJ's most of the day. I decided to not meet my family for breakfast or shopping. I decided to listen to the Clemson game on the radio instead of watching it on TV. (GO TIGERS) I did get up and went to my parents house again and had yummy pizza! My sister and I played with this card maker thing for a couple of hours. We designed a "thank you" card for her co-workers at SAIC. They are doing a bake sell in my honor to help raise money for medical expenses not covered by insurance.

Sunday started off slow. I made about 120 lime green ribbons for organ donor awareness. Then hubs and I took the boys to see Disney on Ice. I was just as excited as them. We had a blast!

And now.....I am TIRED! I need to rest up for this coming week...

Thursday...taking the boys to see Santa
Friday...picking out our Christmas Tree
Saturday...Dropping the kids off at Poppy and Grandma's house to spend the night. Hubs and I have Christmas party to go to and Christmas shopping to start
Sunday...Picking up kids and decorating our Christmas Tree

And Hubs needs to put up our outdoor decorations this week too! :)

I am tired, but I refuse to let Sjogrens and ESRD take my fun out of the holidays!

Epstein-Barr Virus (EBV)

2008-11-26T05:34:00.000-09:00

The mad scientist/researcher is coming out again in me....this personality overtakes and consumes my thoughts for hours or even days at a time. This is just my own personal rant.....so beware!

I noticed in my last set of bloodwork that I have an elevated EBV titer of 7.6. I didn't have a clue to what this was....so I brought out my husbands old medical books. Turns out this is the virus that causes Mononucleosis. Did I have Mono or did I have it in past??? I did more research and found out that people with Sjogrens Syndrome tend to have an elvated EBV titer. Interesting....

Then I stumbled across a few studies that were trying to come to the conclusion that EBV may cause Sjogrens Syndrome and it does say that there is evidence indirectly.

The virus infects the immune B cells and multiplies in the salivary glands and surface tissues of the nasal and throat passages. After the initial infection, the virus remains dormant in the host's body, that is, exists without being infective. EBV can stimulate the production of autoantibodies, which are abnormal immune proteins directed against the body's own tissues and cells. Various lines of evidence suggest that EBV may be involved in the development of two autoimmune disorders, rheumatoid arthritis and Sjogren's syndrome.

Hmmmm....I am just wondering.

Anyone have anything to add to this? I wonder if there are any current studies going on about EBV and Sjogrens or other autoimmune disorders.....

BIG NEWS!!!!!

2008-11-24T04:25:00.000-09:00

I am officially accepted into MUSC's transplant program! I will be listed on the national registry for a kidney. We are STILL looking and testing for a live donor. My sister should be a front runner soon.....we are hoping.

I am to start Cellcept though prior to transplant. Normally, this is given after transplant to bring the chance of rejection down. It is an autoimmune suppressant drug. HOWEVER....because it is an autoimmune suppressant drug the transplant team wants to see if I will respond well to it and bring my ANA titer down to a reasonable level. I see that people with Lupus or Sjogrens are put on this to control their disease....it looks favorable. Anyone out there using Cellcept?

I am very happy with my news.....now I just need to respond well to Cellcept!

Check out Sjogrens & Me New Look!

2008-11-20T09:38:00.000-09:00

I decided it was time for a change....

You Likey?

I took this picture about a month ago in York, Maine. We were up in Rhode Island visiting family and had a wedding to go to. Hubs took me to Maine as a last minute surprise. (I had never been to Maine). It was so peaceful and breath-takingly gorgeous. This picture doesn't do it any justice....I can't describe how nice it was.

What Procrit Injections Have Done For Me

2008-11-18T04:33:00.001-09:00

I have noticed a great deal of hits on this blog for Procrit Injections....so I thought I would write a post on my personal experience with this drug. Procrit or Arnasep is a man-made drug that comes from human plasma. This is why it can be costly.

Epoetin (eh-POH-ee-tin) is a man-made version of human erythropoietin (EPO). EPO is produced naturally in the body, mostly by the kidneys. It stimulates the bone marrow to produce red blood cells. If the body does not produce enough EPO, severe anemia can occur. This often occurs in people whose kidneys are not working properly. Epoetin is used to treat severe anemia in these people.

I use it for the obvious end stage renal disease I am going through. I know many cancer patients on chemotherapy take it as well. I will list the pros and cons that I personally have come across.

PROS
1) I feel like a new person.
2) Procrit lets me play with my kids.
3) I can hold a normal 40 hour job still that I love.
4) It makes me feel like a super hero at times.
5) ENERGY BOOSTER

*** As you can see all these relate to a better quality of lifestyle.

CONS
1) Procrit is costly. Having good health insurance is essential.
2) It took about 5 injections (5 weeks) before I started feeling great.
3) Procrit stings when entering the body, BUT if you warm it to room temp just before injecting it...it is not bad at all.
4) I vomited twice initially when I got the first few injections, but now I have no problems.
5) It is an injection with a needle just under the skin and I HATE needles. I will say that honestly as scared as I am about needles it really isn't bad. In fact, most of the time I don't even feel the needle going into my lower belly, it is the procrit I feel.

Despite the cons, my overall assumption is that Procrit is my life line and it is an unbelievable drug that has given me my life back. If you are getting ready to start procrit injections educate yourself and take a deep breath. In a few short weeks you will feel much better.

A change of Pace...

2008-11-17T06:32:00.001-09:00

I thought I would put a couple of inspiring photos up of my 2 little pumpkins. They sure make the worst of days better.

P.S. No news yet.....

AAAAAAAAAARRRRRRRRGGGHHHH!

2008-11-14T11:30:00.000-09:00

That is what I feel like doing right now....I still don't have the final thumbs up from MUSC! They can't seem to get a hold of my rhuemetologist. Is this my Rhueme from here or MUSC? AAAAAARRRRRRGGGGHHHHH!

An update....kinda!

2008-11-13T04:23:00.000-09:00

Sorry for the delay. I couldn't post anything on blogger yesterday!! I do have what I think is good news....

First, let me say that I still don't have the FINAL answer, BUT I did talk to my transplant coordinator yesterday and her exact words were...

"I think you will be positively accepted".

WHEW....talk about me being a bundle of nerves...I feel sorry for my husband, family, and close friends that have had to put up with me the past few days. I have been snappy....and I apologise from my heart. Thank goodness they are understanding!

OK...back to my conversation with Jennifer, my transplant coordinator... She preceded to tell me that they were reviewing my chart with one of the physicians that has been out of town. They are looking over me this afternoon. It is not a matter of if I will get accepted....it is a matter of how to care for my unique situation prior, during, and after transplant. They want to give me the best possible care and know exactly what to do for me.

SO, I think I will get good news by tomorrow. I am still a little nervous...I just want the final OK and be told I am put on the list!

One thing I have learned about this situation and myself is that I can't deal with the big picture. I know what I want it to be....but I need to concentrate on one hurdle at a time. Right now...it is getting on the list and being accepted on MUSC's transplant program. All the other things......just are not as important as this first step for me. Soon this will be a memory and I will concentrate on finding a live donor.

Thanks for all the prayers and positive thoughts being sent my way!

Home Made Chicken Noodle Soup....

2008-11-10T04:25:00.000-09:00

A good friend of mine made me home made chicken noodle soup...with home made noodles too! It hit the spot and I swear it is a miracle attitude booster. As you probably read from my last post I haven't gotten the word if I am officially accepted into MUSC's transplant program like I hoped for. They are contacting a Sjogren's Specialist to ask about the timing, if I need to be MORE closely monitored before and after transplant, and what they can expect. It doesn't sound like I won't get into the program....but obviously something has them worried. Needless to say I am worried that I won't get on the transplant list....there is that chance.

I think the waiting is what is driving me bonkers. I was told by my transplant coordinator, Jennifer, that I should hear something by today or tomorrow. She sounds optimistic, but until I hear that I will be put on the list, I am restless.

Today is the DAY!!!!!

2008-11-07T04:18:00.000-09:00

I receive word from my transplant coordinator that my case is up for review this morning at MUSC. I should know by this afternoon if I am put on the national transplant list. Everything looks favorable, but you never know. I know a co-worker's father was turned down by MUSC, Emory, and was finally taken by a hospital in Jacksonville, FL. He is doing well with his lung transplant. I believe it has been over 3 years for him.

I got great news about the cost of my procrit injections. I now can get 6 injections for $10.00!!!!! YES, ONLY 10 DOLLARS! I was paying $100.00. I just about jumped over the counter and kissed the pharmaceutical tech. I also found out that with my new insurance at work that my approximate out of pocket amount for post transplant meds should be $105.00 a month. Can you believe it??? God is good. It looks like medicare will not be needed by me because I will have to pay them $100.00 a month for them to pick up about $75.00 a month in co-pays. I know it sounds confusing....but basically I would be spending an extra $25.00 or so a month needlessly if I got medicare. (I am talking about the prescription part...not the one that helps with medical bills) It is baffling and I am still learning. So make sure you do your own research if you are in a similar situation.

I will post later today when I hear from MUSC. Keep your fingers crossed!

***UPDATE***
I am not accepted yet. They want to check one more resource to make sure that the timing of the transplant doesn't interfere with the Sjogrens!!??????!! I should know an answer Tuesday. I am not a happy camper.

Transplant Medicine Costs.....

2008-11-05T10:55:00.000-09:00

and all my tests for the pre evaluation are officially turned into MUSC. Woo-Hoo!!! I wonder if they will review my chart transplant this Friday or next??? The transplant team evaluates each person wanting to do a transplant every Friday morning. This will let me know if I am officially put on the transplant list. Again, hopefully we have a live donor.

I turned in my list of post transplant medicine that they give most people when discharged from the hospital. The cost without insurance is over $4400.00 a month. YIKES! My good friend is a pharmacist here where I work and she is looking up the costs of the drugs with my 2 insurances. We are also trying to decide if I should pick up medicare. (I am eligible for medicare even though I am young for 3 years after the date of transplant). Does medicare pick up the co-pays? Anyone know how this works? I will update soon when I find out more.

Oh and one more thing....a nice thing....I was awarded a Kreativ Blogger Award from Maria @ My Life Works Today . She has Lupus Nephritis in stage 4 which is similar to Sjogrens and CKD. Thank you Maria for this honor....now go visit her site!

Fall Foilage in New England

2008-11-03T09:39:00.000-09:00

I thought I would post a few gorgeous pictures of nature painting a beautiful scene. Enjoy!!

Twiddling My Thumbs

2008-10-29T09:56:00.000-08:00

Well....I am playing the waiting game now. I finished my last pre-transplant test a couple of days ago. (Honestly....it was just a pap needing to be done, but they still need a current pap test record from the past year and I was overdue by 3 months) I am still waiting on the results to forward to MUSC, but it won't be too much longer before I am up for review to be "officially" accepted.

I did get an email from my transplant coordinator that stated the surgeon's notes (Dr. Millgillacuddy AKA Dr. MillgillaDREAMY) and all my blood testing came back favorable. Woo-Hoo! I feel a bit better about the whole "afraid of being overlooked because of Sjogrens" thing I was feeling. I mean I think I have a higher possibility than most of rejecting the kidney. I am probably wrong because I know the immniosuppressant drugs can be adjusted to each person. Anyone know about this? I'll have to research it better, but I do believe I have read this somewhere.

Also, anyone else doing a renal diet? Any tips? I am doing OK with it, but I know I haven't been as strict as I need to be.

I'll quit rambling now....just one of those days....

The Renal Diet...

2008-10-27T10:51:00.000-08:00

I spoke to the nutritionist and everything I thought I was doing healthy for me....was wrong! I can no longer have whole grain foods or wheat. I can't eat bananas, spinach, and other "healthy" foods.

What kind of diet is this you ask?? It is a the renal diet and it is confusing as heck. It is basically a low sodium, low potassium, low phosphorus, and low protein diet. A good resource for me is a website called Davita. Here are some facts from their website.

"The goal of the CKD non-dialysis diet is to preserve existing kidney function to delay the later stages of CKD, particularly stage 5, which is also called end stage renal disease (ESRD). This is the stage when dialysis or transplant becomes necessary in order to live".

I am labeled as ESRD, but we are trying to squeeze every ounce of life out of my kidneys and avoid dialysis. We are looking for a live donor before my kidneys completely fail.

Surprisingly, foods that are big no-no's are oranges, beans, pumpkin, tomatoes,squash, kiwi, anything whole wheat or grain, potatoes, and any dairy product. There are many more listed on the website too. Not so surprising is chocolate and any "cola" soda. I can have sprite, ginger ale, or other light colored beverages.

I will write more about it this diet soon as I learn more about it.

The social worker looking me over

2008-10-24T12:03:00.000-08:00

I also met with a social worker briefly. She asked a bunch of different questions related to mental health and who would be my primary caregiver.

Social worker: "How do you handle stress?"

Me: "I think pretty good, although my husband would think otherwise this morning."

(the social worker gave me the ole' one eyebrow up trick)

Me: "He wanted me to read a map to get here....how can you read a map if you don't know where you are on the map? Needless to say we had an interesting chat" I chuckled. She agreed with me.

Of course she asked me if I did drugs, smoked, drank alchohol, took pills for mental health, etc. etc. Do we have transportation? Do I take my medicine regularly? Have I ever missed taking my medicine? A lot of the questions overlapped a bit.

I handed her some papers to fill out for the National Transplant Assistance Fund. She said she would fill them out and mail them back to me so I can start fundraising.

I guess I passed her test.....she asked me to be part of a support group she was putting together for transplant patients. (I told her I enjoy talking to others about this and mentioned my blog)

Next....was the nutritionist....and the renal diet!

21 tubes of blood on the wall.....

2008-10-22T05:50:00.000-08:00

21 tubes of blood.....take one down and pass it around.....2o tubes of blood on the wall. That is no typo.....they took 21 tubes of blood from me yesterday! I talked to many people yesterday....I suppose the most amusing was Dr. Millgillacuddy.

I am not joking....that is his name. You are probably thinking he looks like the classic "nerdy" Doc. You are so wrong! With a name like that you have to be handsome and have a great smile. (Can I think of that about my Transplant Doc?) Let's just say he is easy on the eyes. OK...now for the serious stuff!

I'll probably have to break this down into a few segments over the course of the next week. There was a lot of info... I'll start with my first appointment of the morning and go from there.

My first appointment was with the Transplant Doctor at MUSC. Like I said his name is Dr. Millgillacuddy. He asked me a few questions about my health and immediate family's health. He then gave his dialysis vs. transplant speech. The pros and cons and the risks. As with ANY surgery there are risks....of course that scares the heck out of me, but I know I will be in good hands. He talked about the actual surgery and how they hook the new kidney to the two main veins that run down into your leg. I will have three kidneys instead of 2. I know that it is important for me to try and get a live donor....but it really sank in on how important for me at this stage in my life to get a live donor match. *** a side note is that I gave 5 more people's names to the transplant team. 3 of whom are people I don't even know. They are friend's of friends and a coworker of my sister. I cannot express the overwhelming gratitude I have for them.

I found something else Dr. Millgillacuddy said interesting. He said it was very unusual to have someone like me come in before I am on dialysis. Most of the patients they see are on dialysis or have been for quite some time. He also said they prefer to get candidates like me. This is the best scenario for transplant. If your GFR is 20 or below YOU CAN BE PUT ON THE TRANSPLANT LIST! We need to educate patients that have poor kidney function on this. My Nephrologists here at home NEVER suggested this way. I WAS THE ONE THAT INQUIRED. I cannot stress how important it is to make sure you know what is going on with your health. Yes....listen to your Doctors, but it doesn't hurt to question them or be a part of your own solution. Many Doctor's I meet think what is best for the majority of patients is best for you. Not always true. If you can build a good relationship with your Doctors (meaning you listen to their advice and they listen to your advice) it is a win-win situation.

I really have liked everyone I have come in contact with at MUSC. They like questions and they like patient's to be involved with their own health concerns. Maybe it is because they are a teaching university....I don't know. I do know I am comfortable with the staff there and not afraid of asking "why?"

BTW...did any of you catch House last night. The patient had Sjogren's Syndrome. I only caught the last 15 minutes. Was it a good interpretation of the disease?

I am back from vacation!!

2008-10-20T05:44:00.000-08:00

Well.....I made it back! I am exhausted. It was well worth it. I took so many pictures of the Fall foliage in New England. Absolutely breath taking! I will post them later this week.

I go to MUSC tomorrow to be evaluated by the transplant team. Say a prayer that I am officially accepted into their program. I still won't know if I will be until probably the end of the month or so.

I am a little nervous, but glad this day is coming. I have to get a few random tests done like an EKG, Lung Scan, lab work, and a couple other things. My hubs is going with me too. :)

As soon as I can I will have tons to update you all with. Can you say Information Overload!

Time to Toot My Horn!!

2008-10-05T06:54:00.000-08:00

OK....I can't help but not be proud of this. Sjogrens and me is now featured on Wellsphere. (Click on the sidebar for the link) This is a great resource of about 1400 health professionals and real people writing about health and wellness issues from across the world. There is something for anyone. My other blog 2 Lil Pumpkins is also featured in the parenting community with nearly 120 other parents.

With Wellsphere's help, I feel like my voice is being heard about Sjogren's Syndrome and kidney disease. It has opened a new door in educating others on what Sjogren's can do to a much wider audience.

I was asked by Dr. Geoff Rutledge to be part of this community. He is the main guru for Wellsphere. I am guessing he saw my blog through Julia at Reasonably Well. She is also a Health Blogger on there.

Rule Of Three

2008-10-02T11:02:00.000-08:00

Valerie at Professional Patient wrote a post on the Rule of Three. She wrote some points that I felt were worth mentioning here.

The greatest challenge in my life with chronic illness is energy management - how to live my fatigue-ridden life without overdoing it. It is an absolute bear, because I can feel wonderful one day, and do more than usual (having been gifted with extra energy), only to pay and pay and pay in the days that follow. It's like there's an invisible line between doing enough and doing too much, and I never seem to know that I've crossed it until it's too late. And to keep things really interesting, the line moves each day. For example, some days, I can do three loads of laundry and feel fine, while other days, just carrying a single load of laundry to the basement leaves me exhausted and in pain for days or even weeks at a time.

In many ways, managing your energy while living with a chronic illness seems like managing your sobriety while you're drinking with friends. You think you're doing fine, only to get one hell of a hangover the next day.

The Rule of Three

Recently, I received some sage advice from a person who has Sjogren's Syndrome, and it has already helped me navigate through a week at the beach without overdoing it! (Normally, I crawl home from vacations and hop right into bed because I'm so tired.) I call it the "Rule of Three": there are three parts to any day (morning, afternoon, and evening), and you can only do two of them. It's so simple, yet deceptively powerful. Your third part of your day is for resting, plain and simple.

I am going to follow this advice as well since I will soon be going on vacation.

My Living Heros....Donors Are Being Contacted!

2008-09-30T10:08:00.000-08:00

I submitted about 5 names on my potential donor list intially a couple weeks ago. Well...they are starting to contact them and ask questions. I have 2 family members and 3 friends on that list. I will keep them confidental for now. :) It looks like I will have another family member and a couple more friends to also submit into the living donor list when I visit MUSC in October.

Heartbreaking News With A Happy Ending!

2008-09-27T18:07:00.000-08:00

This copy of a post is from is from Melissa at Calling All Kidneys. (She donated one of her kidneys to a complete stranger about 2 months ago)

I got the most heartbreaking email yesterday. A lady wrote me asking if I would consider donating part of my liver to her 11-month old son that's dying of liver failure. Unfortunately, liver failure is very progressive with no real treatment. So, he doesn't have much time. It is possible to donate part of your liver and your liver will regenerate itself. They put part of your liver in the recipient, and it also grows to a full liver. Anyway, it broke my heart to have to tell her that I was not able to donate part of mine at this time.

"Update on 11-month-old needing liver"

I wanted to update everyone on the last post. I let everyone know that there was a family looking for a liver for their 11-month old boy.

I have wonderful news!

The night of this post, early in the morning, he received a cadaver liver.

The last I talked to the family, he was doing well.

Thank you to everyone that contacted me regarding this. I'm sure I'll be contacted about more in the future.Melissa

This story had me tears....both at the time of the baby needing a liver transplant and afterwards....tears of joy! Please pray for this little baby.

Fundraising and Financials of Transplant

2008-09-24T06:38:00.000-08:00

Here is part 3 of my posts on the kidney transplant class. The one clear message I received was that even though you may have the best insurance in the world.... plan on a big chunk of money to come out of pocket. Insurance doesn't pay for everything. My sister and I briefly sat down and was trying to figure how much out of pocket it would cost me just in the first 6 months or so during and after transplant. We came up with nearly $20,000 and I am sure we aren't even thinking of everything. This does include my $4500.00 maximum out of pocket deductible. You have to think of lost wages, gas for an 8 hour round trip, lodging, money for the caregiver of my two little munchkins during part of this time, the donor's transportation, lodging, etc. etc. etc. The list is enough to make your eyes cross!

The medicine if you don't have insurance after transplant is near $4500 a month. This is just an estimate! With Insurance it still run most between $300-500 per month. The sad thing is that people can't afford the immune suppressant drugs and will try to space them out instead of taking them regularly because they can't afford it. This causes them to reject the organ and go on dialysis...or even worse die. (Ironically, they will get help for dialysis...not for the meds that keep them away from dialysis). Now, I am talking about people under the age of 65 and do not qualify for medicare. If you are under age 65 and CAN qualify for medicare they will pay partially for your meds for 3 years....then you are on your own. I don't believe I will qualify for medicare because I am not currently on dialysis.

We were also told to start fundraising through your community, church, and work. I have a VERY supportive family with this. I think they know that the financials scare me just as much as the transplant does. My Dad is in the process of organizing a raffle to win a new Harley Davidson....maybe even a new car. My sister is doing things with work and on the local level with bake sales, etc. My mom is making plans with her church....and all my friends are wanting to help. My husband John is helping them with all the fundraisers. I am getting emotional just typing this. You realise how much you can count on others who care for you. I am in the process of establishing a couple funds. I think one is going to be with the National Transplant Assistance Fund (NTAF). I am working with a lady named Rebecca who has been very helpful answering my questions. All my family and friends have to do is call her when they want to set up an event and she will help them. My family and friends that live 1000 miles away can help too.

After I am done with this endeavor and on the road to recovery....I am going to do something to "pay it forward". I do small things for charities now....but I feel like God has lead me to where I need to go because he has bigger plans for me to help others. I just know it and that what is giving me peace about my situation.

Wanted....Living Organ Donors!

2008-09-22T10:58:00.000-08:00

This is part 2 of my posts on the transplant class. They talked about approaching people to be living donors. What to ask, what to say, and what questions they may have were some of the topics.

I can imagine me going up to a healthy looking individual and telling them that I think they have nice organs with a wink. LOL I wonder how many people would look at me like I have 4 heads again?

They gave my sister a 5 or 6 page questionaire that asks about prior health issues or if you have been hospitalized for anything. It is detailed. They will contact my list of potential donors and have them do a blood test initially. Then it is a series of tests which include EKG, MRI of kidneys, psychology examination, etc. They will be at MUSC for 1-2 days outpatient there to do all the tests.

They do a laproscopic surgery to get the kidney out. Really! The big 10-12 inch incision is a thing of the past. You will have 3 one inch incisions and a 3-4 inch incision just above the hip bone. Less scar than a c-section. Most donors are out of the hospital in less than 48 hours and back to work in 2-3weeks. The biggest complaint is gas bloating and fatigue after surgery.

Take a look at my sidebar -------------------> Under THE NEED

There are interesting, but true facts of the need of organ donors. Be a hero to someone. Can you imagine any greater gift?

Transplant Class

2008-09-20T11:14:00.000-08:00

Sorry, it has been a few days. I received a lot of information on what is to come the next few months. Some I already knew, some I didn't. I may divide my info into 2 or 3 segments. :)

First, let me just say it was an emotional day when I sat there with others from different walks of life.....we all have one final destination and that is to get a kidney transplant and live a longer healthier life. Before it started I looked around the class and noticed that there were young and old, male and female, Caucasian, African American, and Asian. Many came as I did with family to help deal with all this info given to us. I couldn't help the tears rolling down my face.

They talked about 3 areas. Steps in getting qualified for transplant, living donation, and financials. I am nervous that my high ANA (antibodies) will disqualify me for transplant. In fact, each year only 6.5 percent of highly sensitized patients receive a transplant. Most remain on dialysis indefinitely, without hope for a life-saving transplant, with grim financial implications and poor quality of life. I asked this question and the transplant coordinator suggested for me to send my latest lab work from the rhuematologist. She said that they may place me on hold for several months to get my numbers down with medicine. This would be OK, because I am not planning on getting this done until sometime next year. She assured me that there were others with similar circumstances and transplant was a success for them. We were told that we should hear from them and meet with the transplant team in the next 4-6 weeks to see if I am transplant worthy. I have to get a pap smear and TB test done prior to meeting with them too. I don't have to get other pre-tests done because I am below the age requirement. Of Course when I get to MUSC I will have a series of outpatient tests like chest xray, EKG, and a few other tests that are done with the transplant team. After you meet with the team (which includes a financial person to see if you can afford having a transplant and all the medicine afterwards) they discuss you in a meeting and see if you are a "true" candidate. And yes......financials are a big part of it...sad, but true.

When you are accepted they place you on the transplant list. (cadaver list) Even though we are going for a living donation I will be placed on this list too. (Just in case I can't find a living donor that matches with me). There are over 600 people waiting for a kidney transplant in South Carolina and the average wait is between 2-3 years for a cadaver kidney. I have been told it would be less than 2 years before I would need dialysis. I found out that the kidneys are given out on a point system....the longer you are on the list, the more points you accumulate. The only time that you would be pushed ahead of others is if you were a child, you had been waiting for a long time and going to die soon, or if you were a 100% perfect match. She had a man who was deemed transplant worthy and in less than 18 hours after he was put on the national list he had a new kidney because it was a PERFECT match. Amazing!

I will talk about living donation in the next day or so......

Thanks for listening! AND PRAY that my high antibodies come down. I don't want to be in that high sensitized category!

Transplant Class on Thursday

2008-09-15T17:05:00.000-08:00

Well....the time has finally come. The ball is rolling on the kidney transplant...at least the first step. I have a mandatory class to attend in Greenville, not Charleston this time. I am thankful of that because of gas prices. I will only need to take a 1/2 day off at work. I hope to learn a great deal at this 3 hour seminar, but I have been told a big part of it is compensation and legalities.

You want to hear something funny....maybe even crazy....I went for a job interview for a promotion at work. Hopefully, I will hear something back this week. I know I put my best foot forward and if it is meant to be....then it is meant to be. A year or even 6 months ago I would have been upset if I didn't get this promotion and now I know it is whatever God has in store for me. I really feel myself changing inside. I think it is for the better. ;) So keep praying for me! It is keeping my numbers steady....the first time in 2 years! Thank you!

Procrit is now....drumroll please....

2008-09-12T17:20:00.000-08:00

Every other week! After 12 weeks of procrit injections we are now trying a schedule of getting one every two weeks and see what my numbers do. My hemoglobin was 11.6 and my hemacrit was 33.7. Hopefully, it will be OK and I won't feel too tired by the end of week 2. We will see....

I didn't realise how bad I felt 3 months ago. Looking back now I am amazed at the strength I did have. I know I am strong and I had support from my family and friends that helped me carry through the bad days that seemed to have been endless. I still have an occasional bad day or two, BUT not like I did before. I can do more, but have to pace myself and listen to my body.

I have my transplant class next Thursday. My sister is driving down from Tenneesee to go with me. My husband and Mom are planning on going too. I will have a lot to update at that time.

A man named Steve I know who had a kidney/pancreas transplant 7 weeks ago is doing great. He is meeting with SC officals and the head of the transplant at MUSC to discuss raising money for research to help prolong an organ's life. Also, to build a house for people who have transplants where you can rent a room for minimum $$$. It is going to be modeled like a Ronald McDonald House, but for transplant patients and their families. I asked him if there was some way I can help him reach his goals because I would LOVE to be part of this.

"Show My Grin To Who"?

2008-09-06T17:17:00.000-08:00

I was told I had mumps. I was told I had saliva sludge built up and told to suck lemon candy while massaging my chipmunk cheeks. Vicodin was given for pain....yes I was Chip and Dale's 2nd cousin twice removed. It went away and came back again and again. I became pregnant 4 years ago with my first child. I was extremely fatigued, my eyes and mouth became more dry than normal, I ached from head to toe, and I blamed it on the 60+ hours of work while pregnant. I ended up with a c-section and placed back into the hospital because a high temperature spike that wouldn't go away. My OB-GYN ran all the tests he could think of because they didn't know what was wrong with me. Finally, I was referred to a nephrologist and rhuematologist. I was told I had an autoimmune disease called Sjogren's Syndrome.

"SHOW WHAT?" I asked. I had them spell it out on a piece of paper for me. I was basically told that it was dry eyes, dry mouth, joint pain, and fatigue. It wasn't life threatening and most people live ordinary lives with medicine.

OK...no problem I thought. I researched it on the Internet and it confirmed what my Doctors said. A few months later because of my slightly waivering kidney function I was told that I had Lupus too. Now that was a familiar term and I didn't like being diagnosed with that. My kidney function was slowly going down and we decided in Jan. 2007 to do a kidney biopsy to see what was going on. The good news was that it wasn't Lupus, but it did show major scarring and renal tubular acidosis that concurs with Primary Sjogren's Syndrome. After a bit more testing...OK A LOT MORE TESTING...it was confirmed that I do not have Lupus or any other autoimmune disease but Sjogren's Syndrome. (I went to 3 different rhuematologists to get opinions).

And now I sit here in front of you getting ready for a kidney transplant in the near future.....because of complications of Sjogrens.

I have started this post about 15 times and I just can't seem to think of anything good to write about. I tried to make it funny...but right now I don't feel like taking the humorous side to having an autoimmune disease. Is there a humorous side?

I guess the best advice I can give is get to know your own body signals...LISTEN to your gut instinct. Question your Doctors and whatever you do....don't let them think that Sjogrens is just an disease with annoying complications...IT IS SO MUCH MORE. Push for research. Find a support group.

AND....

SHOW YOUR GRIN!

Any suggestions on what to write about....

2008-09-03T18:14:00.000-08:00

for Invisible Illness Awareness Week?? I would like to write something that people may want to know more about.....do I make it personal or general? Funny or serious? If you have a suggestion or would like to know more about anything to deal with Sjogrens and/or Kidney Disease...just drop me a quick note. I would love some suggestions. Thanks!

Barney and Sjogrens....

2008-09-01T11:25:00.000-08:00

OK, everybody sing....I hate you....You love me....were an unhappy family....with great big aches and dry eyes too....won't you just say adieu! Yeah, my eyes have been giving me a bit of trouble and I am a bit achy the past couple of days. At least the fatigue is under control right now.

Overall, I can't complain. I feel better than I did a couple of months ago. If I feel the same tomorrow I think Ultram will come to the rescue since I will be working. You ask why I don't go ahead and take the Ultram today??? It is best not to take a bunch of this awesome drug when you have severe kidney disease. I take it only when I know I can't lay around. (i.e. work) Don't worry....I take this maybe 2 or 3x a month and in actuality I can take up to 100 mg. every 12 hours without any harm...supposedly. I caution with its use....but it sure does help on rough days!

I received more paperwork on the transplant class. It asks me about 5 pages worth of health questions and it also asks for the names of potential donors with phone numbers. I am to bring my primary caregiver and any potential donors to this meeting. I think I won't have any potential donors there because my sister and uncle live out of state. They will be my first two listed. Then I have 3 friends that are seriously wanting to test for me....Kelly, Wendy, and Anna. I have about 6-8 others that have showed interest and I am suppose to let them know when testing begins....I am not sure how serious they are in this donation thing. I would totally understand if they decide to back out. This is a HUGE step! My parents are unable to donate because of health issues and hubs has type 2 diabetes...he takes the minimum dosage of medicine, but he needs to be healthy for our boys and me when the time comes.

I will be starting Lifechoice Gym in the next week or so. I only pay a little over $8.00 a month for this benefit through work. The personal trainer will provide a program unique to my situation. I can't wait!

FINALLY....news about MUSC

2008-08-27T07:15:00.000-08:00

I have a kidney transplant class scheduled for Sept. 18th. It takes about 3 hours. It is the first step and is mandatory to attend if you are getting a transplant with MUSC. They recommend a family member to go with you. The good news is that I only have to travel about 30-40 minutes instead of 4 hours to this class. Hooray!

I took another dose of Procrit. Since I am feeling better...I am having a hard time taking these. I really didn't want to yesterday. I have to tell myself that the reason I feel good is because of these injections.

I have met up with a gentleman named Lightning who had a liver transplant by MUSC. He has been great about answering questions...he has even given me the email of a friend of his who just went through a kidney/pancreas transplant at MUSC a month ago. Go visit his story if you get the chance. It is great!

Products I Love That Help With Sjogrens!

2008-08-25T06:39:00.000-08:00

I get dry skin at times. Not too bad at this point, but I like to think it is because I drink A LOT of water and that I take care of my skin. Our skin is the largest organ we have. Here are a few products that I use and feel it has helped me tremendously!

I recently started to use this and I love it. I don't use it everyday, but 2 or 3 times a week. Lindi Skin care was developed for cancer patients going through Chemo or radiation. I have found it is great for us Sjoggries too.

I have been using a sample of this and LOVE IT! Just a drop or two will hydrate those dry patches on your face.

"Lindi Face Serum is a gentle blend of antioxidants, avocado oil, and our unique "LSA Complex™", which help calm irritation and dryness. Its soothing properties help relieve aggravated skin".

Now if there is one product of all my recommendations that you try it is this! Caren Products have the best hand and body lotions I HAVE EVER COME ACROSS! A portion of proceeds go to cancer research and they even have an infants line out too!

"Now you can benefit your skin and treat your senses at the same time with our doctor-recommended bath and body care. Used on your face, hands, feet, and body, our hand and body lotion and other products feel luxurious, but never greasy or sticky. We pride ourselves on the consistency and purity of our hand creams and all of the other products we carry".

You won't be disappointed with these products to help care for your skin. I don't work for these companies and I don't get a kickback from them either. LOL

Quick Update!

2008-08-23T17:44:00.000-08:00

I still haven't heard from the transplant team at MUSC...I know they are busy! BUT...my MUSC nephro has contacted me twice this past week. I should be hearing something soon. I guess that is alright since I have found out that my Hubs insurance pays for my part of the transplant, but not the donors!! Talk about a stab to the heart...or errrr kidney? I did a lot of praying...A LOT and I believe my prayers were answered.....

I found out open enrollment at my job is the next few weeks....and there is no pre-condition clause.....and they pay for a lot of my part and the donor's part...and it starts Oct. 1, 2008!! Thank goodness I have my job at the hospital right now. I talked to our HR department and we are double checking everything. I have been told that our insurance is self-insured at the hospital and that my transplant needs to follow a few rules.

1) It must be at "center of excellence"-No problem here...it will be at MUSC!
2) Deemed medically necessary.....No problem there!
3) Hospital stay must be pre-authorized...DUH...that is a given!
4) This one is funny...it must be a human to human transplant.

I know that there will be a few other rules, but I hope and think it will be OK. I was told that I will be set up at MUSC housing for approximately 8 weeks after the hospital stay to be closely monitored. I wonder if someone will have to be with me all 8 weeks? I wonder when I'll get to see my 2 boys... I wonder how much the eight weeks will cost.....

I guess I should wait until I talk to the transplant team...I will get a better grasp on what will happen. Better yet....I hope I can talk to someone who has gone through this...or something similiar. I wonder if there is a support group...

It is getting late and as you can see my mind is turning with many questions. Thanks for listening!

A day of Doctors!

2008-08-19T10:29:00.000-08:00

I am happy to say that my numbers are the same or even better than they were in June. Still high...but not worse! It seems like the past year my numbers continued to get worse every month. My creatine is 3.14 (down from 3.4 a few months ago) My hemoglobin is `11.9 (Hooray....up from 9.4) GFR went up to 17 from 16. This is very positve for me!! I still have a high SED rate and inflamation rate and all that other good stuff they check for Sjogrens. BUN was high too, but that is part of CKD.

I had a wellness check up and my cholestrol, triglycerides, and lipid panel came back with flying colors. My sugar was 75 (fasting). I am happy to say I am at the lowest risk level for heart disease and such. I'M DOING SOMETHING RIGHT! My good cholesterol is just under the normal range, but excercise will get it to where it needs to be at. This is good news for me because it makes me feel like I am one step closer to getting the "OK" to be kidney transplant worthy!

I received an email from my MUSC nephrologist and she was forwarding it to the transplant team at MUSC. She said she will have them contact me and that she was referring me to them a second time. Hopefully they will in the next week or so.

All my doctors seem to be on board with this transplant...so that is good.

Hey! I'm talking to you!

2008-08-18T10:29:00.001-08:00

Dear Sjogrens,

I cannot express how deeply I feel towards you right now. Lets face it....we haven't been the best of friends...we have been through some good times and bad times together. I think overall I comply to your terms....although through gritted teeth. I have learned to pace myself....deal with the fatigue....and even get around with the aches and pains you like to contribute to. So why do you want to attack my kidneys?

What did they ever do to you?

.....I am still waiting for that answer. Sjogrens...you are like a spoiled brat...always wanting it YOUR WAY. At times I feel you are a bully too. Just remember one thing.....I WILL WIN this silly game of yours!

~~Vicky

Why I Get Up In The Morning......

2008-08-15T07:38:00.000-08:00

......I love those smiles!

Patience, Procrit, and Pondering.....

2008-08-13T05:44:00.000-08:00

*finger tapping*

I have learned something about myself....I am not a patient person at times. I am STILL waiting on a phone call from MUSC. I know that TECHNICALLY they have until the end of the week to call me before I call my MUSC nephro next week to remind them to call me. The bad thing is that I know through the next 6 or so months my patience will be tested over and over again.

I had my eighth injection of procrit last night. I cannot stress how much it has helped me. I see the vampires tomorrow for a full blood work-up. Maybe I can go to every other week on the injections. I see both the rhueme and nephro next Tuesday. It will be interesting what they will say from my visit to MUSC.

I sit pondering a good bit....playing out the scene that I will be one of the fortunate ones who find a quick and almost perfect match to my kidney. That part doesn't scare me so much....the actual surgery doesn't either....it is the 3 months or so after the transplant. It reminds me of my high risk pregnancies....I need to get through the first trimester and the chances of my body rejecting it is much less. I am nervous because I know I have very high ANA, SSA, and SSB antibodies in me. BUT...I tell myself the transplant team knows how to handle this. They may not have dealt with Sjogrens and kidney failure but they are very familiar with Lupus and kidney failure....and that is an autoimmune disease. I hope MUSC tells me that they have dealt with this before and have had favorable outcomes.

Charleston Slideshow!

2008-08-11T05:12:00.001-08:00

As you can see I LOVE Architecture!!! Many pictures are of old churches and houses. A few are of me and John being silly on the beach! We had fun despite the news we didn't want to hear at MUSC. I go for more bloodwork in a day or two. Next week I have appointments with my hometown rhueme and nephro. It will be interesting to see what they have to say about my trip to MUSC.

More on MUSC....

2008-08-07T06:38:00.000-08:00

First...can I say I love fountains! My hubs and I found this on the way back to our hotel in Charleston. We were taking a short cut through the outdoor gazebo-like area of another hotel. It was beautifully lit. I was very tempted to take off my shoes and run through it.

Well.....I am still waiting on the MUSC transplant team to call me. I wish they would. I am anxious....I think my sister is even more anxious than me. She wants to be first in line to see if she is a possible donor. She is in California for her job this week, but will be back this Saturday. She will be staying with us for the weekend before she heads home to Tennessee. My oldest tater tot turned 4 yesterday and we are having a big diego party for him on Saturday.

At MUSC I talked to Dr. Alan Brown (rhuemetologist) and he was familiar with renal involvement with Sjogrens. I liked him immediately and so did my husband. He was not much older than us and wears a bow tie to work everyday. He was a Clemson fan too. Also, he is good friends with the Doctor that delivered my first son and who I see at work occasionally. (I work for a hospital...I am a certified lactation educator and work in a mom/baby boutique and also fill in at the cancer center boutique. I am in the process of getting my certification in fitting for prosthesis for breast cancer survivors too). We went over all my symptoms and he checked me out. He spent about an hour with me. He answered our questions. He was very honest on his prognosis....which was to basically save my energy for the big autoimmune drugs for transplant. He wanted to talk to my nephrologist at MUSC about it more in detail. He gave me a note for her to page him at her convience.

I saw Dr. Rachel Sturdivant (nephrologist) at MUSC next. I had to get some lab work done STAT. The normal blood tests and pee in the cup. She was not much older than me and a mom of a toddler too. I explained that I had two toddlers and wanted to do whatever was needed. I also liked her a lot. She went over my history of CKD and Sjogrens with me and checked me out from head to toe. She then told me that if my kidney function was around 30 or 40 we would try the bigger autoimmune drugs. Since it was 17 (it went up a point from 16...hooray....the Doc was quick to point out that it was probably a fluctuation of the labs) that it was past the point of trying that and I should consider going straight to a live kidney donor transplant. She explained that a live donor would work best for me. Studies have shown (I verified this online too) that my chances to live a normal life would be best if we could hold off dialysis or even prevent dialysis from ever happening to me. Don't get me wrong...dialysis is a GREAT option for some people.....just not for me at this point. She told me she would refer me to the MUSC transplant team and they should call within the next couple of weeks.

Now....we are waiting for a phone call. I have many questions....from the transplant to the financials. One HUGE difference I noticed was that these Doctors were not irritated and they did not talk down to us because of all the questions we had. My new local Rhueme is good about this too. She doesn't mind questions. I feel like we are heading in the right direction.

I'll post some fun pictures of Charleston on the next post!

Excuse me....would you please pass a kidney...

2008-08-04T10:39:00.000-08:00

over to me? How do you even begin to ask people that? HELLO...it's an organ!

I wish I had great news for everyone.....but I will be officially put on a live transplant list. I will be hearing from the transplant team at MUSC in the next couple of weeks to get the ball rolling. I am scared. I am worried. But most of all....I am MAD! I don't think finger pointing is the right answer but I feel like I was let down by my old rhuematologist and maybe even more so by my current nephrologist office. I wish I had listened to my gut instinct over a year ago...even longer. I felt like I was being pushed back and forth like a hot potato between my two doctors and no one wanted to take some sort of initiative to put me on the "BIG" autoimmune suppressant drugs. I am glad I finally switch rhuematologists a few months ago....at least I am being taken care of and she was smart enough to refer me to MUSC. NOT TO MENTION...I have recently taken a big part of my care into my own hands and educated myself on Sjogrens and what it can do to organs!

Yes....Sjogren's is the culprit. MUSC currently has one other patient they are monitoring with SJS and CKD by itself and 4 others with Lupus/SJS/CKD. I do have much more to say and will later this week. I want to explain why MUSC has come to this decision and what the next steps will be. I am learning about the finacial aspect too.....which would make a sane person go nutty.

I have one four letter word..................that comes to mind.........NO, NOT THAT ONE! ;) Although.... I have thought of that four letter word too! It is...

Countdown to MUSC...

2008-07-30T05:47:00.000-08:00

I will be traveling tomorrow to MUSC with hopes of good news in the treatment of my CKD related to Sjogrens. My kidneys are operating at 16% right now. They may not have any news for me, but at least I will know where I definitely stand. I will keep you all posted when I return. It probably will not be until Monday, August 4th. My Birthday!

I had another round of procrit last night. Funny thing is....I think by Monday I feel my energy level go down a bit....it's probably in my head or maybe just Monday's in general! I do love the energy it provides for me. We may switch to Arnasep. I have heard that you only need to take that once a month. It is the newer of the 2 drugs. I also have a question about my pain relief drug called Ultram......I love the stuff, but when Hubs and I looked at it's warning online it claimed to not use if you have severe kidney impairment. SO....I haven't taken but 3 pills the past 5 weeks and that was when I felt so bad I could barely move.

Talk to you soon!

***Update***

Ohhhhh I hate dealing with insurance and billing/coding specialists!! I was called a couple of hours ago by a lady in the MUSC nephrology dept. and she said that I was NOT able to have my appointment because I wasn't referred by a primary physician???? I told her my nephrologist referred me. She got a little snappy. You currently don't have a primary physician? (NO LADY! I SEE SO MANY SPECIALISTS AND ALL OF THEM ARE INTERNAL MEDICINE DOCTORS.....I WORK FOR A HOSPITAL THAT GIVES FREE MEDICAL VISITS AND WRITES PRESCRIPTIONS FOR URGENT-LIKE CARE VISITS TO THEIR EMPLOYEES....WHO CAN AFFORD MORE DOCTOR BILLS???)She said that I needed to call my insurance company and get it pre-authorized. (meaning that my insurance will pay) I call my insurance company and they said under "special circumstances" a nephrologist can refer another nephrologist. I had to get my nephrologist to call and get it pre-authorized. I am waiting on a phone call. I think the girls at my regular nephrologist office can make all this happen. They are GREAT! They really help me out and was very understanding when I started my procrit injections. If they can't.....I think we'll just bite the bullet and pay for the visit out of pocket.

Everything is a go for tomorrow now. The girls at my office said that they called my insurance company and NO precert was needed. They called MUSC too. Everything is straightened out....I hope it stays that way tomorrow! :)

I could use Mary Poppins right about now

2008-07-26T06:41:00.000-08:00

I wish she was real. I grew up thinking she was. Every time I cleaned my room as a youngster I thought and said out loud "I wish Mary Poppins was here." The funny thing is that I still say that as an adult and I really could use her most weekends. I need her magical ability to sing and clap to tidy things up. Instead of toy soldiers jumping into their toy box...I would have dishes dance their way to the dishwasher and pots would love to scrub themselves. The vacuum would run on it's own while whistling and ALL the laundry would bathe itself while cheerfully blowing bubbles to keep my little toddlers amused.....ahhhhh....that would be nice!

You see...I could have used her "spoonful of sugar" last night and not just on me! LOL My 2 year old got sick and I was up late last night. (he woke up this morning with a smile on his face....feeling much better) I guess mommy's "spoonful of love" worked just fine.

I must go now. I have a sink full of dishes and a couple pots to scrub. I have laundry that is never ending and as far as the vacuuming.....that may have to wait! It depends on how I am feeling. We all know that we need to pace ourselves and not over do it because we will dearly pay for it the next day or so. Ahhhhh....the joy of Sjogrens! Do you think Mary Poppins has a cure for this?

This post was inspired by Julia at Reasonably Well. A great blog on Sjogrens and everyday struggles that we all can relate too!

Professional Patient & My Brain Fog This Morning!

2008-07-25T07:07:00.000-08:00

First, I would like to thank Val at Professional Patient for mentioning my blog to others. I am hoping I can give hope or at least let others know that they are NOT alone. The Professional Patient is a...

"Guide to managing illness and insurance in the USA. Tips for dealing with doctors, working with your insurance, saving money on meds, coping with chronic illness, etc. From a 30-something Marfan Syndrome and Sjogren's Syndrome patient."

It is a great resource and one that you want to put in your favorites!

And now to my Brain Fog issue.....

I was getting myself ready for work and my kids ready for daycare this morning. As usual time was getting away. Nothing out of the ordinary with 2 toddlers. ;) We ran out the door and started down the road. Half way to the daycare....I realized that my boys did not have breakfast this morning!!!!! OMG! How could I have forgot something like that??? Needless to say Chick-fil-a was a lifesaver this morning! *sigh* The boys love their fresh friut and small hashbrown rounds with milk. LOL

Fresh Clean Sheets & A New Quilt!

2008-07-23T04:56:00.001-08:00

There is something about fresh clean sheets and a new quilt that makes me smile and feel good! I got this quilt a couple weeks ago while visiting my sister up in Tennessee. It was a present to myself. My mom and sister bought me 2 pillow shams and 2 throw pillows to complete my set as an early birthday present.

Do you ever think about the little things that make us happy in our everyday lives?

Driving through town and hitting all the lights on green....
The sound of your children laughing....
The smell of fresh flowers....
A nice thunderstorm on a lazy summer day....
A pina colada or strawberry daiquiri....
Hearing a song over the radio that brings back a good memory from long ago....
AND....
Fresh clean sheets and a new quilt!!!!

On another note...hubs did another injection of procrit yesterday...this makes my fifth. WHAT A DIFFERENCE! I can't say I am ready to do cartwheels, but I definitely can get up in the morning and feel as though I actually slept. I still love to get naps on the weekends and at times I need to go to bed early. Anyone who is afraid to get procrit injections due to chronic kidney disease because of Sjogrens....it is soooooooooooo worth it! The needles do not hurt at all...I PROMISE! The medicine does sting a bit....but let it sit out at room tempature for about 30-45 minutes. That really helps. MUSC is next week and I can't wait to share my experiences with all of you and see what they think needs to be done. Of course the major thing is the affect Sjogrens is having on my kidneys....but all those other lovely symptoms of Sjogrens will be addressed too.

Speaking of sharing experiences.... look at my other blog 2 Lil Pumpkins...you will see my 2 most favorite little men eating watermelon! It will make you smile!

WoooHOOOOO!

2008-07-18T09:42:00.000-08:00

My hemoglobin is up to 10.5...Hemacrit is 31.1. I still have to take a weekly shot of Procrit....we will see after next month's bloodwork if I can go bi-weekly. :) I do have more energy....I am able to play with my kids more. :) I hope everyone has a great weekend.....and I'll post early next week!

Charleston South Carolina

2008-07-15T10:16:00.000-08:00

I love Charleston. I haven't been there in almost 4 years even though I live less 4hours away. I can't wait til the end of the month when I go to MUSC and stay for an extra day to play. I have visions of taking a carriage ride at dusk through the cobblestone streets in the historic district. Also, eating at a fine trendy establishment with hubs and staying at a very quaint Bed & Breakfast that has a turn down service that places chocolates on my pillow. Oooohhhh. Unfortunately, it may be the Red Roof Inn across the river in Mount Pleasant. Even that is a whopping $95.00 a night plus a zillion in taxes. I am going to continue to search for that Bed & Breakfast....all the way up to the evening before to get a good deal. At this point even if we made reservations at the Best Western in historic Charleston it goes for $189.00 per night. Whew! I'm not cheap......just frugal! Before the kids, Hubs and I stayed at The Ansonborough Inn .Very nice....my kind of place...."pre-kids". Don't get me wrong....my two little munchkins are worth the sacrafice of staying in luxury. I love them with all my heart, it just would be nice to stay somewhere like this again with Hubs.

Update on Procrit.... Hubs did my injection for me. He did very well! I am really feeling the affect of the Procrit....never thought that I would love an injection in my belly. LOL Anyone who knows me and needles will get a kick outta this because of my phobia of them. Procrit = my life coming back!