It has been too long!

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..

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.

who am i ???

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

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

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!!!

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

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...

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

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...

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!

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....

and it will be good!

Ode To Procrit Injections & My Kidneys

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!

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...

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

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..

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...

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

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

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. ***Update*** A more recent post on a new diagnosis of vasculitis.

Transplant on my mind...

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

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

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!

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

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.....

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?

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

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

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...

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...

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

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

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

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???

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....

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!

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??

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...

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...

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...

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

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...

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

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....

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!