Kidney Disease and Kidney Transplant

[BelleLovesTheBeast]

I was just wondering if anyone here suffered from kidney disease or had received a kidney transplant. I thought it might be nice to share stories.

I was born with Autosomal Recessive Polycystic Kidney Disease (ARPKD) which is extremely rare and only has a 20% survival rate. In Jan 2006 I received a kidney transplant from a friend. My younger sister also has the same kidney disease and had her first transplant in 2003 and a second June 2007.

 

[Mackey Mouse]

Wow... you two have been through a lot and I hope continue to do well... hopefully some will come forward and share their experiences here for you..

Hugs.

 

[Shugardrawers]

I confess to knowing absolutely nothing about this but that doesn't mean I can't keep you in my heart and be here when you need a friend. What can I do to help?

 

[BelleLovesTheBeast]

WOW! Shugardrawers you too are a survivor. Congratulations! It's nice to meet you.

I just thought it would be nice to share stories. There are a lot of side effects with the meds that they give to you to keep from rejecting the kidney. I was just wanting to hear others experiences. I'm 32 and other than my sister and one other person I met on a message board (who also lives in Nashville-he's 25) I don't know anyone else who has had any health problems. Having young healthy friends they just don't understand certain issues and restriction that come with having a transplant or any illness for that matter.

 

[BellvilleDad]

My younger brother has Lupus. It started with joint pain and rosacea on his face. Later his kidneys shut down. It happened in a matter of a couple weeks. He was suddenly down to 2% - 3% kidney function and had to go dialysis.

I started testing in May 2005. He was doing the peritoneal dialysis at home, but he was obviously getting worse.

Finally in November the surgery was approved and scheduled the week before Thanksgiving. Our dad had passed away just 4 weeks before the surgery, but we couldn't postpone because my brother was so sick.

In the couple days after the surgery, he had trouble getting his potassium level down, but they adjusted his meds. Since then, he's been doing great. He has to take a handful of pills everyday, but he doesn't seem to have any trouble with side-effects.

Let me know if you have any specific questions and I'll try to help.

Stay well!

 

[kidneygirl]

I found out when I was 26 (I'm 33 now) that I was born with only one kidney. By the time I found out, my kidney function was at 30%. Fast forward 7 years. All of a sudden, my kidney fuction started to drop and my nephrologist told me that I needed to start looking for a donor ASAP.

My sister-in-law was a match and our surgery was scheduled for Sept. 20th. However, on Sept. 19th, the doctors canceled the surgery because they were worried about my sister-in-law's blood pressure. By that time, I wasn't feeling well and had to go on peritoneal dialysis. During this time, my sister's co-worker was getting tested and was approved to be a donor. Five weeks later, on November 29th, 2007, I received my new kidney!!!

We just celebrated our 7th month post-transplant anniversary. Despite dealing with a numb thigh (my surgeon cut a nerve while "installing" my new kidney ), I feel fabulous!!! My dh, dd, and I are going to Disney World in January (14 months post transplant). I can't wait to experience Disney with my 2 year old and being able to keep up with her with all my energy that I didn't have pre-transplant.

I'm participating in a new drug study so I thankfully don't have to take Prograf or Prednisone. My nephrologist said if this drug gets FDA approval, it could "revolutionize" transplants in the future. So far, things are going really well with this new drug and hopefully it will have FDA approval within the next couple of years.

To this day, my nephrologists have no idea why my kidney failed.

 

[BellvilleDad]

That's a great story, Kidneygirl (well, except for the numbness)! My BP was a little high, too, and I had to prove to the docs that I could control it with diet management and exercise before they would let me donate. It worked.

Have you every checked out this living transplant forum?

http://www.livingdonorsonline.org/c...d.cgi?az=list&forum=DCForumID7&conf=DCConfID1

Lots of great info there. Stay well!

 

[Nala56]

My husband has an autoimmune kidney disease. He was dx'd when he was 37 nearly 10 years ago. It took several kidney bx. to diagnose him. He was in the hospital over 2 weeks and was very, very sick. He takes Prograf and Cellcept to keep him in remission. When he relapses he has to go back on prednisone which he hates. Since his disease is autoimmune the dr's won't consider a transplant. It has been a very bumpy road, I feel so bad for him, but he just plugs along and never gets down. We have a 16 year old daughter, so most of her life, daddy has been sick.

Your stories of transplant are truly inspiring.

 

[BelleLovesTheBeast]

Wow! Thanks for sharing those stories. I'm taking Prograf and Myfortic (similar to Cellcept - Cellcept caused too many stomache issues). I'm not taking Predisone because I too am part of a study. One to find out which steriod that they give you in the hospital is most effective in preventing rejection.

I too did PD. Well I did for 3 weeks but couldn't tolerate the solution (they believe I had an allergy to it) and ended up in the hospital for 11 days. I was lucky at that point that 4 friends were tested - 2 could do it. My mom couldn't donate because she gave her kidney to my sister, dad couldn't because of high blood pressure and having kidney stones in the past and my husband was the wrong blood type.

Kidneygirl - what is the drug that they are testing you on? If you can't post it here, could you PM it to me? I'm always reading about the different studies they are doing.

I heard that they have kidney transplant patients that have received bone morrow from the donor not needing any anti-rejection meds. Lots of interesting stuff going on.

Nala56 - I've heard that they are working on an artificial kidney. I hope that they can get that working and approved so that if your husband does need one they can use that.

 

[kidneygirl]

Kidneygirl - what is the drug that they are testing you on? If you can't post it here, could you PM it to me? I'm always reading about the different studies they are doing.

The study drug is Belatacept (if you google it, there's lots of information about it). Right now, I am getting it through an infusion once a month, but hopefully it will be in shot form once it gets approved.

 

[Nala56]

Wow! Thanks for sharing those stories. I'm taking Prograf and Myfortic (similar to Cellcept - Cellcept caused too many stomache issues). I'm not taking Predisone because I too am part of a study. One to find out which steriod that they give you in the hospital is most effective in preventing rejection.

I too did PD. Well I did for 3 weeks but couldn't tolerate the solution (they believe I had an allergy to it) and ended up in the hospital for 11 days. I was lucky at that point that 4 friends were tested - 2 could do it. My mom couldn't donate because she gave her kidney to my sister, dad couldn't because of high blood pressure and having kidney stones in the past and my husband was the wrong blood type.

Kidneygirl - what is the drug that they are testing you on? If you can't post it here, could you PM it to me? I'm always reading about the different studies they are doing.

I heard that they have kidney transplant patients that have received bone morrow from the donor not needing any anti-rejection meds. Lots of interesting stuff going on.

Nala56 - I've heard that they are working on an artificial kidney. I hope that they can get that working and approved so that if your husband does need one they can use that.

Thanks for all your info. For years my DH was just on Prograf and did fairly well. Checked his PK level often. He does have hand tremors pretty bad but other than that no other side effects. His kidney Dr. thinks after a while the Prograf becomes toxic to his kidneys so she cut back prograf and added Cellcept. He has not felt well since being on Cellcept. His immune system get too compromised, and he's relapsed twice this year. Dr. is now trying to wean him off cellcept but he's been pretty weak and tired last couple of weeks. It is such a catch 22, which treatment is best.

Do you have same problems with transplanted kidney?

 

[BelleLovesTheBeast]

Nala56 - I have hand tremors too from taking the Prograf. They are better just a few hours before having to take my next dose. The other side effect I have from the Prograf is the difficulty sleeping. I have to take something to sleep. Otherwise I'll go days without any sleep.

My transplanted kidney has done great. I've had mine for 2 1/2 years this month. I've had one infection in the kidney and was hospitalized for 2 nights and put on really strong antibiotics. Other than that I haven't had any problems.

Kidneygirl - I have numbness over the transplanted kidney. It feels very strange.

 

[Shugardrawers]

Clinical trials are a wonderful thing It was my participation in the studies that saved my life (so far). It's not for everyone but I didn't have anything to lose so I figured why not?

 

[jessily]

My heart goes out to you. My family has polycystic kidney disease-PKD (I was blessed to find out recently that I did not inherit it). My grandfather had the disease and all 3 of his children inherited it. My dad's brother had a kidney transplant (his wife was the donor) last July, my dad had a kidney transplant in November, and his sister is on the donor list. My dad had been on the donor list but really was not expecting to hear anything for years. While he had health issues related to his kidneys, he was not yet on dialysis and all in all was doing pretty well. He got a call at 2 am that a kidney was being flown in from CA. It was such a good match that he was taken from lower on the list. We were surprised! He had some complications after surgery, but now (8 months later) he is doing so much better!

Anyways, I just wanted to say that my thoughts are with you as I know this is a tough thing to deal with. Donors make such a huge difference!