Patience to Reach the Finish Line

[gilgar76]

The process for evaluation for a kidney transplant is so long and having to wait for decision from the committee who meets every Thursday about potential kidney transplant patients is very hard. The one thing putting mine off is that they’re not sure to give me a transplant since my issues with my heart. I’m exercising and taking meds to keep a healthy heart. They want to do more tests on me to make sure I’m a viable candidate and that my heart is strong enough for surgery if possible. Meanwhile my Coumadin and blood clotting factors is an issue as well. But that’s under control. They want to see the function of my heart muscle to be sure I can sustain a surgery and if I’m lifelong worthy to have a new kidney. My sister wants to donate and help me get out of all this dialysis stuff and be back to what I was. Dialysis is not bad but it’s work! It’s hard to be able to sustain a balance with diet and medicines to keep my kidneys stable and making sure my heart is strong enough. So exercise and diet is a major part of my life right now. Meanwhile I have heart tests coming up because the evaluation team wants to be able to make an educated and wise decision to deem me worthy of a kidney transplant. So it’s all about patience to reach that finish line of an actual kidney transplant.

[Jayhawker]

I’m going through transplant eligibility testing right now too. It has been stressful to get through the numerous tests. Then it’s a waiting game. I’ve been trying my best to take all of this one step at a time. Managing emotions through all of this can also be challenging.

In my case, I believe all the needed testing is now done. Everything has come back in looking good for me. I learned on Sept 24th that the cardiologist who reviewed all my cardiac data had cleared me for the transplant.

Yesterday I got a call from the transplant nurse coordinator. She said she’s going to try to have all my tests together to present to the transplant team for review next Wed, Nov 6th. I’m hoping that will happen. If so, I’m hoping I’ll hear something either late next week or early the week after.

In the meantime I’m just trying to stay busy and think positive thoughts about all of this. And, a person who posted in response to my post titled “And now I Wait” suggested that I think of this time as though I’m preparing for a marathon. I actually thought that was a great suggestion. In many ways this is like preparing for the Olympics; my personal triatheletic competition. So I’ve got to stay focused. Eat right. Take my meds. Exercise. Learn as much as I can about my event, a kidney transplant. And then engage in positive mentalization related to all of this. So that’s what I’m now trying to do...

Some days definitely go better than others. But the analogy is, overall, working for me thus far.

Jayhawker

[maryalraines NKF Ambassador]

Hang in there and do EVERYTHING your dr and team instruct you to do. It sounds like you’re on a good regimen and they’re trying to work with you; just give it time. If you were like most of us maybe our kidney failure came upon us quickly but in reality it was building up over the years somewhere in the background and we probably didn’t know it. You are fortunate that you have someone that is wanting to donate a kidney as mini or waiting for cadaver kidneys or for someone to step up and donate, so you at least you have that bridge crossed. Keep doing what you are doing. If your sister hasn’t been tested check with your team and see if they will go ahead and test her so that when you’re ready and strong enough you guys can move forward quickly. You’re right, dialysis is tolerable but I’m sure you agree it’s not the way you want to live.Take care do what you’re told to do and keep the faith.

[gilgar76]

thanks! Keeping up the faith everyday

[Staygood]

I have a similar situation of warfarin. I am still in pre stage. Hoping this week I will be called for the appointments to start pre testing.

Any suggestions you may have on the process of evaluation?

Just last week I found out my gfr dropped to 18. I contacted the kidney transplant coordinator but she is away for 1 week. So now I need to wait.

What can I expect?

[gilgar76 in reply to Staygood]

Expect a lot of things. Don’t try to take it all in at once. It’s overwhelming sometimes. Learn as much as you can about your health and the process. Be patience. It’s a long process. Believe me I know. Once you get on dialysis be very careful with your warfarin and other medicines. Eat right and exercise. Watch your fluid intake. Just prepare yourself to be in it for the long haul. I’m still waiting on tests because of my heart. That itself is holding off any decision of a transplant And surgery is a risk for warfarin users. Cautions must be taken by every doctor. Monitor your INR as much as you can. Patience is something you need. I’m still waiting on transplant list because we still waiting for tests to be done because of my heart. Good luck.