Questions for transplant recipients

[vandie]

Forgive me if this has already been covered, but here I go.
I found out last week that two of my potential donors are a negative cross match.     Next week they will start working up by best girlfriend of 20+ years.  I should be in receipt of my new bean within two months. 
I am excited, scared and nervous, and in need of some clarification.  It was a huge decision and took a lot of conversation with the people that I love to convince me that this is best decision for me and for my daughters. 
Can those of you that have received a transplant tell me what to expect?  Realistically, not statistically.
Thanks so much     

[coravh]

I'll tell  you what I went through and then give you a few good statistics at the end.

I had a rough time with my transplant. There were some unexpected complications removing the kidney from my cousin (she is just fine though) and it took them an extra 4 hours to take the kidney out and they damaged it. That was also an extra 4 hours under anesthetic for me too. Because of the general I barfed for the first 2 weeks after the transplant (diabetic gastroparesis was a factor too). However, within 24 hours of the surgery my creatinine went from 7 to 2 - and don't forget, the kidney was damaged.

I was in the hospital fro 3 weeks. The first week was awful, but after that I have to admit that I was feeling better than I had been on dialysis. I stayed in the area for another 3 weeks because I had a fungal infection in my kidney and needed IV for it every day. My creatinine continued to go down and I was feeling better and better every day. By the end of the first 6 weeks I was moving around and getting my strength back. It was such a delight to eat what I wanted, but I had a real problem drinking the 2 liters per day. It didn't seem like there was enough room for both the water and the food! lol

Here I am, 3 years, 11 months post transplant, but who's counting, and I am doing very well. I have had ups and downs but overall I feel infinitely better than I did on dialysis - and I thought I was feeling pretty good too! My baseline creatinine has settled at around 1.3. Both my cousin and I are fine and the only thing we argue about is which one of us got the most out of the donation. She still insists that she got more out of it than I did. Ha! Fat chance.

Now, here are the stats. For the average person, one year of dialysis takes about 4 years off your life. There have been some major studies in Scandinavia that have shown that a transplant increases your life expectancy by 3 times or more what  you would have on dialysis.

I never had many problems with the meds at all. Keep in mind that I am on a steroid avoidance protocol - no prednisone. Both my friend and I (we had our transplants within a month of each other) had some panic attacks during the first week or so due to the  high level of the meds. Keep in mind that you can talk yourself out of it if you keep your head.

If you have any specific questions, just let me know.

Hope this helps.

Cora

[vandie]

Thank you so much.  Yes, that helps a lot.  I have to be honest.  Until I started on this site, I thought steroids were the only option.  I have to talk to my transplant doctor and see what my options are.  When I started on prednisone, i poofed up, hated the moon face.  Would love to avoid that if at all possible.   I may have some more questions.  Thanks again!!

[MelissaJean]

In short you should expect a roller coaster ride... complications, emotions, it's amazing and scary.  My friend made me a poster: Take One Day At A Time.  Too often you get caught up in the what ifs.. that poster became my mantra.

[Rerun]

I don't understand.......a "negative" cross match is a GOOD thing.  A Positive cross match is a bad thing.  ??

[vandie]

I don't understand.......a "negative" cross match is a GOOD thing.  A Positive cross match is a bad thing.  ??

YES!!
It took me a while to get my head around it. 
When the blood is mixed together of the donor and the recipient, a "positive" crossmatch means that the recipient has responded to the donor and that the transplant should not be carried out. A "negative" crossmatch means that the recipient has not responded to the donor and therefore transplantation should be safe.

Clear as mud?

[charee]

Mine and my husbands blood came back twice with a positive cross match , also my blood even had a fight (as the dr explained) with itself ! Not sure what that means but I will find out.

[vandie]

Mine and my husbands blood came back twice with a positive cross match , also my blood even had a fight (as the dr explained) with itself ! Not sure what that means but I will find out.

Yes, keep me posted.  My blood has done a lot of things, but never in a fight with itself.....

[Zach]

Now, here are the stats. For the average person, one year of dialysis takes about 4 years off your life. There have been some major studies in Scandinavia that have shown that a transplant increases your life expectancy by 3 times or more what  you would have on dialysis.

Hi Cora,

According to your "stats" my 24 years of dialysis, has taken about 96 years off my life.
How does that make any sense?  I'm forty-eight, so was I supposed to live to be 144 years old?     

[goofynina]

and you look pretty darn good for your age Zach

[coravh]

Now, here are the stats. For the average person, one year of dialysis takes about 4 years off your life. There have been some major studies in Scandinavia that have shown that a transplant increases your life expectancy by 3 times or more what  you would have on dialysis.

Hi Cora,

According to your "stats" my 24 years of dialysis, has taken about 96 years off my life.
How does that make any sense?  I'm forty-eight, so was I supposed to live to be 144 years old?     

I did say on "average". For many people dialysis is very hard on their body. Obviously,  you do very well on dialysis. I did not. In fact, I was malnourished because I was so sensitive to potassium and I couldn't drink things like ensure because it made me throw up. Malnourishment will certainly shorten  your lifespan. Also, I had severe blood pressure problems while on the machine. this is despite the fact that I never had more than 1.5 kg to take off, even over a 3 day weekend. I would come in a bit  high but by the time I was done I had to wait at least an hour to come up to 90/60. That sort of fluctuation in BP is also very hard on  your system.

I'm really happy that you have been able to be on dialysis so long and survive. I was dying while I was on and doubt very much that I would have lasted more than a few years. Congrats on being able to handle it so well. I know a great many people who dont'.

Cora

[Stacy Without An E]

Hey Vandie...

I have had two kidney transplants and am waiting for a third, but I will try to recount the positives and negatives as best as I can.

Keep in mind my last transplant was ten years ago, so things medically may have changed.  Also, both my transplants were from my direct family members, so I never had a rejection episode until years later.  I still have the same kidney disease, so any kidney I receive won't last forever.

Depending on how you react to the anesthesia, you may be able to sleep through the worst part of the pain.  During my first transplant I was young and didn't have sleeping issues, so the first couple of days I woke up occasionally and went back into a deep sleep.  During my 2nd, I woke up pretty quickly and had to suffer through the consequences.

Yes, it's major surgery, so there will be some pain issues when you awake.  You will have a morphine drip for the first day or two, but it only allows you a certain amount in time intervals, so it doesn't help as best it could.

I actually had pain issues with that damn catheter they place in your urethra.  My mind kept imagining what it might be poking at the end of that damn needle, so I probably made the pain worse mentally.

You might find that you're mind is a bit foggy because they'll not only be pumping you with huge amounts of occasionally (steroids) to keep your immune system from attaching your kidneys.  Then they'll give you another boatload of antibiotics so you don't get an infection or catch pneumonia.

They will get you out of bed and standing by the first day.  It will be highly uncomfortable but will be good for you.  Don't refuse.  The quicker you start walking the sooner you'll be back to being your old self AND get out of the hospital.

1st Transplant: 3 week hospital stay (1983)
2nd Transplant: 5 days (1996)
3rd Transplant: CAN'T WAIT

Promoting yourself from the world of Dialysis is great achievement.  I wish you well in your future health.

P.S...If you do receive your kidney from your girlfriend, keep in mind you'll start crying at movies and every 28 days you'll get a little bit grouchy.  Other than that you'll be just fine.

Stacy Without An E

stacywithoutane.blogspot.com

"Sense is Not Common Enough"

[Minea]

I just talked to my neph yesterday and asked about life expectancy on dialysis and with transplant. She told that it seems that if you do very good dialysis, that is 5 nights per week (we talked about hemo) the expectancy should be even. And she said that doctors have speculated that if you are doing best dialysis which is 6 nights a week (= 48 hours) it may be even better with dialysis. That was a surprise. So it makes me feel better about my future. I am getting transplant in near future but I do not have to be scared about losing it.

[Zach]

I just talked to my neph yesterday and asked about life expectancy on dialysis and with transplant. She told that it seems that if you do very good dialysis, that is 5 nights per week (we talked about hemo) the expectancy should be even. And she said that doctors have speculated that if you are doing best dialysis which is 6 nights a week (= 48 hours) it may be even better with dialysis. That was a surprise. So it makes me feel better about my future. I am getting transplant in near future but I do not have to be scared about losing it.

That's exactly right!  The future is on our side.       

[mmmmdeedee]

That just reminds us folks that we need to live each day to the fullest and always tell our loved ones that we love them!!

Reminds me of a song and fortunately for you guys, you can't hear me! ...
...and when you get the chance, to sit it out or dance, I hope you dance. (Lee Ann Womack).

[kitkatz]

Exactly!