I am a bit scared....

[Victoria05202000]

   I was reviewed at MUSC this morning to be put "officially" on the kidney transplant list and they didn't give me the ok.  They didn't say no either.  They want to contact a resource and ask about the timing or monitoring that may need to be done prior and after transplant.  My husband seems to think they probably never had a transplant case caused by Sjogrens and wanted to have a professional opinion from a Sjogrens Specialist or Rhueme on how to go about this.  I hope that is it.

I don't know what I will do if they don't see me transplant worthy.  I don't want to go on dialysis in the next couple years.  I don't want to die in 15-20 years.....the average person lives 10 years on dialysis....so 15-20 years is being optimistic.  I keep thinking of my two toddlers and it breaks my heart if I am the "sick" mommy.  I think I do a good job not letting them know anything is wrong with me, even on the the worst of days.

Please say prayers that things will turn out fine. I know God has a plan for me, but I hope it is one that I can live to a ripe ole' age.

Take Care!
Vicky

www.sjogrensandme.blogspot.com

[genko_b]

Oh Vicky, that is so difficult to be in wait-and-see and now to be in more wait-and-see mode. Perhaps it is just a delay to see if there are complications they need to consider with autoimmune. I am sure that transplants have been done with folks with lupus, where kidney involvement is more common.

We will certainly pray for you that you get your answer soon.

Genko

[Victoria05202000]

Thanks Genko.  I just wanted to express my feelings before I try to go to sleep.  I always know someone here will be listening.
Take Care!
Vicky

[Tinker]

Hi Vicki,
I'm so sorry you have to go through this.  I will be saying prayers for you and sending good vibes for you to recover asap. Please keep us posted on how things go.   Tinker

[Bucky]

((((((Vicky))))))) - sending you virtual hugs and remembering you in prayer.   The waiting for answers to medical issues is so hard.  Praying that everything will work out for you so you will be around for a long, long time to spend with your family. 

Keep the faith.

Bucky

[kimbo]

Hey Vickie,

I will be praying.

love and hugs  kimbo

[Epson]

Vicky,

I am only too familiar with the waiting game.  Personally I find that the best thing to do is keep busy and try to think about other things.

My dad has bad kidneys (86 years old) and his condition has been stabilized for about two years, but did get a fistula in his arm for dialysis, when that time comes.  There is a lot that can be done with medication and diet, not to mention medical progress in treating kidney maladies.

Wishing you the best of luck.

Epson

[Pooh]

It seems we are always waiting for something doesn't it.  We wait for sunrise, then we wait for sunset.  We wait for family to come for holiday gatherings, we wait for the birth of a new baby.  We wait in line for purchases, we wait, we wait, we wait.

I will keep you in my prayers Vicky, and pray that your wait is short and the news is good when it comes.  As Epson says, try to stay busy and not dwell on it.  Yikes, listen to me, telling you to stay busy.  Raising those toddlers is a busy day and half if I remember correctly. 

Anyhow, we are here if you need us.  Let us carry some of your burden and hold your hand through this journey. 

Hugs and God Bless,
Pooh

[Collie]

I have heard, good things come to those who wait; so God must have something really good for you!!!! You are in my prayers, please keep us informed.

Collie

[irish]

Victoria, I don't blame you a bit for being upset about this situation. The good thing is that they didn't say no. The other thing is that it may be that because of your diagnosis of sjogrens they have to check and see if the follow up post op is the same as so many of the other autoimmune diseases. I would think positive about this wait. They are checking their T's and dotting their I's. Better to have the information before hand than to play catch up later.

Let it be known that with all the prayers going your way(including mine) you can rest easy as God will keep you in his care. I will also pray for your children and hubby. Hugs Irish

[Victoria05202000]

Thanks everyone.  I feel a little better this morning and surprisingly slept pretty good.  I guess I was emotionally and physically exhausted. I do dislike the waiting game.....but as Collie pointed out the great saying "good things come to those who wait."  I think this will be my slogan for the next few days.   

Irish, you are thinking along the same guidelines as my hubby.  They just want to make sure they do everything correctly.  I know they have done cases with Lupus nephritis and this I would "think" is similar.  Maybe they will put me on a new medicine to get my lab numbers a little more stable.

I am normally a very positive thinking person ( I think most of with an AI disease have learned to be) but I really appreciate the hugs, prayers, and positive thoughts from my Sjogrens family.  My personal family has been good, but I get the opinion that they don't want to talk about it......they just want an answer.

Take Care!
Vicky

[Katybarstool]

Hi Vicky

My thoughts and prayers are with you to.  Hopefully, you willget the answers soon.

God bless.

Kathyx

[susanep]

Vicky I also said a prayer for you. It is normal to be a bit scared. I am usually scared of the unknown. I try to work harder at trusting God, but he knows I still get scared in the trying. When ever it is something really serious, I plead the blood of Jesus. It is just something I take seriously. And it is true , be patient and wait  upon the Lord. We are all thinking of you. God sure must have special things in store for you.

susanep

[Jesse88]

Vicky I'm looking forward to reading your post that says you've gotten the go-ahead.  What others have said really rings true.  It does sound like they're crossing all the "t's" and dotting all the "i's."  Worst-case scenario, if you did start dialysis, I can't imagine they would still find you unworthy of a transplant.  No, all things point to them just being careful and going "by the book."  I understand that's how they do things when transplants are involved....very carefully.  When you think about it, that's really a good thing.  I know it's awful playing the waiting game, but it will be to your benefit in the end.  Please keep us posted.

[Cheryl]

Vicky,
   Of course you are scared!  What a major crossroad for you and your family!  I trust that those who make the decision will consider your youth and your children.   They will know how vital you are to your family and will ensure that you have a long, healthy life.   I agree with the others that MUSC is following procedure in checking every little thing.   
   You are in my prayers, too.   I know waiting is hard.  Hang in there!
Cheryl