:( 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
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
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
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
((((((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
Hey Vickie,
I will be praying.
love and hugs kimbo
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
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
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
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 ;D
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
Hi Vicky
My thoughts and prayers are with you to. Hopefully, you willget the answers soon.
God bless.
Kathyx
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 :)
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.
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
Oh Vicky - I do hope you get your answer soon - I always think that the waiting is the worse time, at least when you have all the info you can deal with things better. Concentrate your efforts into having fun with your two little ones if you can, instead of worrying, easier said than done I know - but so much more productive and enjoyable.
Cyber hugs to you x x
Hi Vicki,
Im sorry i have been a bit slow to respond. I'm sorry you are having to go through so much emotional truma at the moment to compund the pysical stuff youare going through. I will keep my fingers crossed that they make a decision soon and you get the go ahead.
I can feel that new kidney doing you god already honey.
Take care i will be thinkingof you
Pud
Again, thanks everyone. I feel a little less worried today. It is definitely on my mind, but I wouldn't say it is consuming every minute of my day.
Jessie, I appreciate your kind words, but if I went on dialysis their answer would still be no. I am exactly the kind of patient they want to do a transplant on EXCEPT the darn Sjogrens. My kidney function is down to less than 16% function and doctors want a candidate to not be on dialysis. Dialysis puts so much wear and tear on your body for most people. If your kidney function is less than 20% you can be put on the transplant list....doesn't matter if you are on dialysis or not. Some people have to go on dialysis at where my kidney function is at....some people feel somewhat fine without dialysis until their function goes less than 8%. It just depends on the individual. I think I would be one of the ones that could go down to a pretty low kidney function before dialysis. I work 40 hours a week still despite everything....and I can collect disability because I am labled as End Stage Renal Disease....not to mention the Sjogrens messes me up time to time....BUT I have more good days than bad......and as long as that is the case I will keep doing what I am doing. :P
Take Care!
Vicky
Hi Vicky
With an attitude like yours you should be a perfect candidate for a kidney transplant. You're so positive and positive people tend to have the best outcomes. I hope you get word soon - and I hope that word is YES.
Take care - Scottie :)
Keep that positive happening honey we're all rooting for you
Pud
Thanks Pud!! I feel better everyday with what the answer will be.....YES, we accept you in the transplant program......
Then it will be......YES we found a live donor......
Then it will be.....YES the transplant was a success....
Then it will be.....Happily ever after at least for 15-20 years until another kidney is needed.
THEN.....we repeat steps 1-4. ;D
Vicky,
I'll keep you in my prayers too. It's good you did not get a 'no' so hopefully things will work out for you. try to keep a positive attitude, for you and yours.
Dave
Hey Vicky,
I just wanted to post and give you a big hug from me. OMG hun, you have more than a bit of a reason to be scared. I can totally understand why you feel the way you do. I don't think you could be a person and not be scared. I'm not sure what I can do other than keep you and your little ones in my thoughts and prayers.
Love,
Lady Nova :)
Vicky, I am not sure what to say except that to be going through this when you have two little ones is a very cruel twist of fate. You sound like you have your head in the right place and I hope you have the love of support of your family and friends. Make sure you keep us all updated as I am sure everyone of the webboards will be thinking of you and sending you positive vibes.
Beverley
Vicky- I, too, am praying that you will get the all the positive answers you need to get as well as you can be.
All my best to you, Tracy
Oh Vicky....Thinking of you and sending you good thoughts!
Steve
Hi Vicky,
I'm so impressed with your strength and willingness to reach out for support.
I ran across this website where you can 'light' a candle for a person who needs some extra help
http://www.gratefulness.org/candles/candles.cfm?l=eng (http://www.gratefulness.org/candles/candles.cfm?l=eng)
SeaBreeze...that is a great site. Thanks so much. Thank you everyone!
I hopefully will know an answer today. I hope I don't have to wait until Friday. I will let everyone know something when I find out. (fingers and toes crossed) :D
all apendages crossed, eyes tehgjhtdulk.
oopps better uncros the eyes to type.
keep us posted
pud
I should give Pooh the credit for that site... I saw it here in a different post... It is great isn't it...
Thanks Pooh !
I Still Have not heard anything. I left an email late yesterday to my transplant coordinator. I have a feeling they won't know anything until Friday when they have their weekly meeting. Keep everything crossed and keep sending positive thoughts and prayers!
Take Care!
Vicky