I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: cambonesegirl on April 06, 2008, 12:48:43 PM
-
I got a kidney transplant!!! After being on dialysis for 9 years and on the waiting list for 5 years, I finally got it! :yahoo;
Here's the short story version.....
I got the call 1 a.m. Monday morning for a potential donor (again) then around 9 a.m. I got another call saying to go to the hospital. YAY! While there, they did some test, I got dialysis and by 4:30 p.m. they were rolling me to the O.R. I was told I came out by 11 p.m? Everything was just going so well for me, each day my labs came back better and better dropping to normal levels. I came home Saturday around 4 p.m. I feel great, a little pain at the incision site so I'm moving a little sluggish, but I can feel my energy level kicking in.
A little personal note to add.....
I haven't been able to produce urine in over 8 years so I have to train my bladder now. It was nice when I first came out of surgery because they put a urinary catheter to help, but once that came out the first four hours I was going about 10 times in 45 minutes, that because they gave me a diuretic pill, but once that wore off I was still going every 30 minutes to an hour.....that hasn't changed yet. I'm not complaining though... I CAN PEE AGAIN!! =P
It was very surprising to get the call because I met with the doctor a month ago and he said because my p.r.a is high I would probably have to wait a couple more years. I got a 2 out of 6 match.
-
This is fantastic news :yahoo; :bandance;. Hope you continue to do well. :grouphug;
-
Good for you! Congratulations on your new kidney. What a great day for you...after all that waiting. I wish you the best on your continued recovery...what an adjustment to make ! A great adustment that is!
-
Congratulations!!! :clap; I'm so happy for you. Your story has given me hope for the future to come. I'm still trying to get on the list. Slow process but I know it will be all worth it. I wish you the best success.
-
:bandance; :yahoo; cambonesegirl. Congratulation!!!!! Please let us know how you are doing. Drink, drink, drink and rest. :yahoo; :yahoo;
-
:yahoo; :bandance; :yahoo; :bandance;
-
:clap; Congratulations! That's wonderful news! Better stock up on TP! :2thumbsup;
-
Yay.. Mark the day and have a Happy Kidney day every year...
So excited for you!!! :yahoo; :bandance;
-
Yay! Congratulations! :bandance; :bandance; :bandance; :bandance; :bandance; :bandance; :bandance;
-
:yahoo; Congratulations!!!
-
That's GREAT news! I'm so happy for you! :yahoo;
-
Wonderful news.
-
Thats awesome news cambonesegirl. Woo! Hoo! :clap;
-
Yay Cambonesegirl!!!! :yahoo; :yahoo; :yahoo; Long may you pee!
-
:beer1; Keep drinking that water! So happy to hear the news! It must of been a great tissue match to get around the high PRA. Congrats! :bandance;
-
Fantastic! Another IHD member transplant... keep that pee coming and enjoy!! So happy for you!!
-
Congratulations that'e excellent news. :yahoo; :clap;
-
I think we need a thread with pictures of transplant patients holding up their bags of pee! :rofl; Thanks Tamara for that idea! ;D
-
Great news! So happy for you :yahoo;
-
Yes, pee is good!!! Congratualtions! I loved hearing your story, I too have a high PRA and it gives me hope that there will be a day I get that call too!! Yes, I am excited for you and keep us posted on your continued good health. And Happy Peeing!!!!
-
Congrats Cambonesegirl!!!!
-
YAY for you!!!! That is wonderful news!!!!! Pee for us, girl!!! :bandance; :bandance; :beer1; :beer1;
-
I am so happy for you. Finally you got what you needed.
-
Congratulations :clap; :clap; :bandance; :bandance;!
Hope the kidney lasts for many years!
-
:yahoo; :bandance; :yahoo; :bandance; :clap;
Happy thoughts your way! Congratulations on your new kidney!!!
NolaGail
-
fantastic news :2thumbsup;
-
congratulations :yahoo;
long may it last,have a few :beer1; for me.
-
I think we need a thread with pictures of transplant patients holding up their bags of pee! :rofl; Thanks Tamara for that idea! ;D
LOL..... I was told I might have to have the catheter in still when I go home since I haven't produced urine in 8 years, but they took it out the day before.
:thx; EVERYONE! I'm still going about every hour when I'm awake and every two throughout the night, but no complaints here!
-
Great - that's a fierce little kidney! :clap;
-
I am glad your wait is over!!! :basket: :big hug: :usaflag; :rofl; :clap; :yahoo; :2thumbsup; :thumbup; :beer1; :grouphug; :bandance; :bandance; :bandance; :bandance;
-
What terrific news to read this morning :) !
Sending you wishes for continued success,
and
Sending up prayers for your donor's family...
love,
kelli
-
Yes, pee is good!!! Congratualtions! I loved hearing your story, I too have a high PRA and it gives me hope that there will be a day I get that call too!! Yes, I am excited for you and keep us posted on your continued good health. And Happy Peeing!!!!
Yeah I got my first and only blood transfusion in January of 2005, I was refusing for a long, long time because I knew it would affect my being on the wait list. Doctors told me I was at risk of going into cardiac arrest. Normal hematocrit is suppose to be above 30%, my was 15 and ever since I got the transfusion my P.R.A. has been in the mid 90 % so the call was so unexpected. Goodluck to you, it can happen, hope you get that call soon!
-
Just read this thread...soooo happy for you!! :cuddle;
-
Praise the Lord!!!! So happy for you hon!!!!
Lori/Indiana
-
Yes! YEs! YES! :yahoo; :yahoo; :yahoo;
-
:clap; Just came across this thread. For me there is no bigger thrill I can think of than that first post-transplant pee. Yay you.
-
Here's a little update on how I'm doing. It's almost been three months since my transplant and I've been feeling and doing fine. I have been back in the hospital a couple times since my transplant. The first time was because I was having shortness of breath and chest pressure. Everything was fine and I was discharged a couple days later. The second time was because my creatinine kept creeping up. It was at 2.0 when I was admitted to the hospital. They thought I was going into acute rejection since I was highly sensitized when I received my transplant. I had a biopsy done and it showed no signs of rejection, I was just dehydrated. Right now my white blood count is low, it's at 0.8. I know that's not good and I'm very prone to infections. Anybody know why the white blood cells might drop?
-
You got the transplant.....That is totally awesome!!! :yahoo; I hope it stays working perfectly.
-
How much water are you drinking? This is the question I am asking my husband 10 times a day (transplant May 14th) and now I am asking you. Fill the glass and drink it. Fill the glass again and drink it. Fill the glass again... you get the idea. You can do it!
Are you on Valcyte? Here's a link that might be helpful:
http://doublecheckmd.com/EffectsDetail.do?dname=Valcyte&sid=41385&eid=2237
-
How much water are you drinking?
Are you on Valcyte?
I'm drinking about 70 to 80 ounces of fluids a day, I actually have to force it down. The doctor told me to drink at least 2 liters. That's more than two liters. And yes I am on Valcyte. Thanks for the link
-
Hi cambonesegirl,
Which immunosuppressants are you on? Are you taking any other meds?
I have read that too much anti-rejection meds can lower your WBC (whilte blood cell count) as can interactions with other medications.
I found this:
IMURAN:
Precautions: Certain medications, such as allopurinol, can increase the effects of Imuran and further deplete your white blood cell count. Remember to always contact the transplant team before taking any new medication.
Common Side Effects: Decreased white blood cell count, decreased platelet count, hair loss.
...........
Did you have Thymoglobulin?
Anti-thymocyte globulin (rabbit) on the white blood cells may also reduce the body's ability to fight infections.
..........
I hope they figure out what to do for you - good luck! :cuddle;
-
okarol,
I'm on....
Prograf 8 mg twice a day
Cellcept 750 mg twice a day
Prednisone 5 mg a day
Bactrim 1 tab a day
Valcyte 450 mg a day
Protonix 40 mg a day
Metoprolol 100 mg twice a day
Norvasc 10 mg a day
Sensipar 30 mg twice a day
Insulin 4 units 3X a day
Latus 8 units a day
Multivitamins 2 tabs a day
Sodium bicarbonate 1300 mg twice a day.
When they found out my WBC was low they had me put my Cellcept, Bactrim, and Valcyte on hold. And today in Clinic they stopped my Bactrim and Valcyte all together since I'm almost three months post transplant.
Thymoglobulin? They didn't mention anything about that, I'll have to ask.
They prescribed me Neupogen injections to up my WBC, but gosh I'm having a hard time getting it, my insurance won't approve it. I've been trying to get it since Monday :banghead;
-
I ended up in the hospital because my white blood cell count dropped. I was on Valcyte and had Campath induction. Neupogen will make you feel much better. I had some pain for a few hours after I got it, but it was worth it. I felt better very quicly.
-
congrats and :bestwishes;
-
I don't understand why the drug companies do this. There are probably folks here who know how to deal with drug companies like the best of them, so maybe they will comment. I hope you get it worked out soon. :cuddle;
-
Thank you for sharing your 3 month update! :thx;
I find it really helpful to read these type of posts, as my new kidney is only 1 week old (as of today!).
I hope you continue to do well, and look forward to hearing continued updates. :cuddle;
All my best to you,
MRR
-
Hope you are feeling well! :flower;
-
A couple of times a Dr. had to fax info to my insurance co and they then covered certain drugs. Just my :twocents;
-
We haven't heard from you in awhile. Hope all is well! :flower;
-
My transplanted kidney will be six months at the end of this week. Everything is still going good. I still have to go see the doctors once a month since I was highly sensitized when I received my transplant. Starting next month I will only have to get labs once a month, yay! My only complaint now is my blood pressure, it's too low and my body is not use to it. I'm not on any sodium restrictions and I take Fludrocortisone, 0.1 mg Monday, Wednesday, Friday and with all that I'm still running low and still getting dizzy. Other than that, I feel great.
-
:cheer: Yay! Good to hear from you! I hope you get the BP leveled out - take care! :cheer:
-
My transplanted kidney will be six months at the end of this week. Everything is still going good. I still have to go see the doctors once a month since I was highly sensitized when I received my transplant. Starting next month I will only have to get labs once a month, yay! My only complaint now is my blood pressure, it's too low and my body is not use to it. I'm not on any sodium restrictions and I take Fludrocortisone, 0.1 mg Monday, Wednesday, Friday and with all that I'm still running low and still getting dizzy. Other than that, I feel great.
This is really great news about the kidneyversary. :cheer:
Stephen is having the same problem with lowish blood pressure. I keep encouraging him to eat a little more salt and drink more water. Does that make any difference for you? I had no idea there is a med to raise blood pressure. After 25 years on bp meds I can't imagine him having to take something to send it in the other direction. weird... When he was still in the phase of cutting out the bp meds, the doc told him that it would be better to keep the bp a little on the high side of normal than the low side of normal as that would ensure good perfusion of the kidney. I don't know if that's true later on after all the healing and adjustment has taken place. guess maybe he should ask the doc.
How are your phosphorus and magnesium these days?
-
This is really great news about the kidneyversary. :cheer:
Stephen is having the same problem with lowish blood pressure. I keep encouraging him to eat a little more salt and drink more water. Does that make any difference for you? I had no idea there is a med to raise blood pressure. After 25 years on bp meds I can't imagine him having to take something to send it in the other direction. weird... When he was still in the phase of cutting out the bp meds, the doc told him that it would be better to keep the bp a little on the high side of normal than the low side of normal as that would ensure good perfusion of the kidney. I don't know if that's true later on after all the healing and adjustment has taken place. guess maybe he should ask the doc.
How are your phosphorus and magnesium these days?
The Fludrocortisone I'm on is suppose to help my body hang on to sodium better, but that doesn't seem to be working. I drink lots of fluids and eat salty foods like pretzels, popcorn. chicken broth, etc., but it's not helping.
My phosphorus and magnesium levels are okay. I'm not on any medications for them anymore. I was told it's not at normal level yet but it's not to low either.
-
I do hope it gets better for you. :cuddle;