Wow...it's been awhile!

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

But it did happen.

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

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

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

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!

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)

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!

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.

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.

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?

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.

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.

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.

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.

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!

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!!!