Another Update on Sjogrens and Kidney Lab Work

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!

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!

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??

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!

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...

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

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!

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)

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!!!!!

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!

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

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...

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!

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!

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....

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!!!!!

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.....

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

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

Twiddling My Thumbs

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...

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

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.....

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!!

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!!

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

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!

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!

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

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!

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

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

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....

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"?

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....

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....

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

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!

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!

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!

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!

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......

......I love those smiles!

Patience, Procrit, and Pondering.....

*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!

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....

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...

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...

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

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!

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!

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!

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

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!

Sjogren's and kidney involvement??

Yes, it is possible. Many people have no clue what Sjogrens is.... actually for some people it isn't that bad. They have the dry mouth and dry eye symptoms. They attribute it to "old age" and take drops. I know those symptoms can be annoying as heck and can even make you change the way you live.

I have to laugh when I see medical journals or articles stating that although there is no cure for SJS it is not life threatening. HAHAHA It can be when it attacks your organs dufus's! I know I am in the minority on this, but I have met 2 others on Sjogren's World that have kidney disease caused by SJS. Another is getting looked at and he is concerned about his numbers. The key word is "CAN" be life threatening. Even if it does end up as renal replacement therapy AKA kidney transplant or dialysis....the quality of life seems to go up for most. Granted if you are on dialysis 3 times a week for 4 hours at a time....you need to adjust your everyday schedule to accommodate.

I have been educating myself on what seems to be the path my body is choosing to go down. I wish it would listen to my heart and my head. "KIDNEYS....DON'T YOU DARE QUIT ON ME". My Nephrologists believe that renal replacement therapy is in my future. How soon? They can't put a timeline on it.



It could be this year or 10 years from now. I can't help but think of that carnival game with the "sitting ducks" lined up ready to be knocked down.....I plan on being that "sitting duck" that won't go down.....the duck that sits there with that silly smirk looking at Sjogrens.....go ahead and try to knock me down....if you succeed, I will pick myself up!!

Update on MUSC

Well, at the end of the month I will be going to MUSC (Medical University of SC). I am happy to have specialists on top of the field to take a look at me. I will see a nephrologist and rhuemetologist. Hubs and I will take advantage of being in Charleston, SC and spend an extra day to play around. I will take pictures and post!

The second shot of procrit did make me sick about 8 hours after the injection. It was fast and only one time. BUT...I have to say that I feel like I have a little more energy. I am still exhausted, but at least I don't feel like I want to cry just because I am so tired. :)

I get my third shot of procrit today after work. Hubs still doesn't feel 100% like he can do it. He is so strong and anyone that knows him laughs when I tell them how much he HATES needles. He gets light-headed....even has passed out with bloodwork. And I have a phobia of sticking myself! I wonder if such a phobia exists.....I have it!!!

I wanted to share the Spoon Story that I came across. It makes perfect sense to all of us with a "silent disease."

Happy Fourth of July!

*hugs* to all our military personnel and "Thank You" for what you do!

Second Round of Procrit!

I am actually looking forward to it. Last week I was loathing the idea and this week I can't wait to me stabbed by a needle in the belly! I guess I am ready for this burst of energy. It could take up to 4 injections. I hope not.

I am going to MUSC (Medical University of SC) in Charleston the end of the month. I have an appointment with a Rhuematologist and should get an appointment with a Nephrologist too. Tomorrow, I have an appointment with my hometown Nephrologist to discuss how far along my kidney disease is that is caused by Sjogrens. I know I am in stage 4, but does that mean I have a few months or years until dialysis. What are my chances to stop this CKD if my Sjogrens goes into remission?? Say a prayer that I still have hope. Thanks!

A conversation with my ALMOST 4 year old

I was driving my two little munchkins to daycare this morning before I headed to work....

ME: "OHHHH, mommy is too tired to get out of this car and get you guys into school".

Nolan: "Call Daddy. He can get a wheelbarrel and carry you to school".

ME: "hahaha, and how will he do that"?

Nolan: "HE could carry you and push you in the wheelbarrel. That would be great."

ME: "That would be great."

Kids are so funny. He thought it would be cool for me to be in wheelbarrel.

An Amazing Little Four Letter Word....

HOPE

It can really change the way you feel. I was depressed earlier this week and now I actually feel like I am becoming my old self again. The procrit injection was not bad at all. The nurse showed my hubs how to do it. We decided the belly was the best place for me. I didn't feel the needle hardly at all, but when she was 1/2 way through the injection I could feel the burning sensation. It felt like I had a fireant bite for about 10 minutes. I don't feel a burst of energy as of yet and I was told it could take up to 4 injections.

My GFR rate is 16. That is a bit scary, but I will do whatever I need to do to keep it from dropping to 15. (15 is when dialysis is a huge possiblity). My creatine is 3.35 My hemoglobin was 9.6. We have an appoinment on July 1st with my nephrologist and hubs officially gives me my first injection of procrit at the office. He had to look away for a few seconds yesterday...he hates needles. :)

I am looking forward to this burst of energy to come. It claims to improve your way of life.

Bitterness and Procrit Injections

***UPDATE***
Go to my new outlook on Procrit and what it has done for me. Click Here!

I hate the way I am feeling right now....I mean besides the obvious fatigue, gritty dry eyes in the morning, a mouth so dry that it is hard to swallow a biscuit, foggy brain syndrome, muscle tenderness, and the nausea that comes and goes. I feel bitter and angry about my Sjogrens. I want to know why it is also attacking my kidneys. I often ask the classic question...WHY ME?

I often feel guilty that I seem to be bathing in self-pity. Even though I have been diagnosed with SS for almost 4 years and misdiagnosed with Lupus...I think it is starting to sink in that I don't feel good. I work with cancer patients a good bit with my job and I see what they go through. The looks on their faces when they just had chemo can be heartbreaking. Some of them have the best attitudes and they are at peace with their illness. I want that. I want to be the one that everyone says that I have a great attitude towards my stage 4 kidney disease. I want to feel like I can beat this! I don't want to go into dialysis. Everyone constantly reminds me that dialysis isn't a death sentence. Why do I feel like it is? I am only 36 and I have 2 small toddlers that I want to be active with. I don't want them to think their mommy doesn't feel good!

I start Procrit injections tomorrow. I don't know if it will once a week or bi-weekly. My husband is going with me. He'll have to give me the shots. I can't do it! (I couldn't even prick my own finger to check my sugar when I had gestational diabetes). Thank goodness my doctors have got my insurance to pay for the injections. I have a high co-pay of $100.00 for eight injections. My insurance originally said it wasn't covered. I heard that each injection can cost $1400.00-$2000.00 a piece!!!

Anyone else out there??

I believe this is when it all started....the problems with my kidneys. It was back in 2000. I was actually on vicodin and had a stent running from my kidney to my bladder during my wedding and honeymoon. I had kidney stones and was told my ureters were smaller than normal. I was discharged from the hospital just short of my upcoming wedding...which was less than 48 hours away.

We suffered a miscarrige in 2002 and went through infertility problems in 2003. Fast foward to me having my 1st son born in 2004 and my second son born in 2006. I was diagnosed with Sjogren's Syndrome right after my first son was born in the fall of 2004.

I am writing my thoughts, concerns, triumphs, and set-backs on this blog in hopes to see if anyone else is going through what I am going through. I plan on getting into detail about my diagnosis. Over 4 million people have this autoimmune disease...so why do people look at me like I have 4 heads when I tell them that I have this chronic illness?? I have the two most common complaints of this disease. Dry mouth and dry eyes...amongst many other problems. Unfortunately, I also have it affecting my kidneys and I am now in Stage IV Chronic Kidney Disease. Stage V is dialysis.

When I started this blog, I was the ONLY one that mentioned Sjogrens Syndrome in my profile in all of the blogspot world!! I stand here alone and hope someone else would like to join me in educating and winning our battle with this piece of shit disease called SJOGRENS!! Care to join me??