Travel while on wait list

[GAL14]

I’m on the kidney wait list for transplant and I can’t decide if I should travel in case I get a call for a deceased donor. Opinions please

[Bassetmommer NKF Ambassador]

HI Gal, Good question for you doctor. It is a chance and not knowing your medical situation or where you are on the list, it would not be wise for us to comment.

[GAL14 in reply to Bassetmommer]

thanks Bassetmommer

[GAL14 in reply to Bassetmommer]

Basset mommer you seem to know what you’re talking about are you in the Facebook group Natural Kidney Journey if so do you agree with their diet? If you’re not in the group u may want to check it out

[Bassetmommer NKF Ambassador in reply to GAL14]

I did check it out. The problem with their plan is it is not realistic for most people and for a lifetime. It is too radical. I love food... I love to cook, bake, grow my own food and experiment. I love the look, smell and science of food. So when I got diagnosed, I took it upon myself to become educated in nutrition for CKD. I read tons of stuff, took/take classes, and worked with a dietician. I was working in the health care industry so I had a big background to start with. Diets have to be something sustainable. You have to be able to have a life and be flexible. I am not saying that it is ok to eat everything out there. But it is responsible to learn what you can, what you can't, what you shouldn't and what will kill you. From there, you can live with the diet. Their food looks terrible and as one person said, "smells like butt." Not an endorsement for me. But if it works for folks, well that's great. I worry about the rebound from such a restrictive diet.

[GAL14 in reply to Bassetmommer]

You are amazing to give me such a thoughtful response I really appreciate it and agree with you I have IgAN and have been told by my doctor that I can eat seafood does that sound right to you

[lowraind in reply to Bassetmommer]

I totally agree. It is another choice for those who can. I am not sure I can and I know my husband can't.

[WYOAnne NKF Ambassador]

I agree with other replies that you should talk this decision over with your doctor. Also check with your coordinator at the transplant center you will use. How long have you been on the transplant list - is also something to consider. That being said, you still need to live your life. I guess it would also depend on where you are planning to travel. I am not sure I would travel out of the country. But remember, you are only a plane trip away. When I was waiting for a transplant I did some traveling within the US. For me, it removed some of the stress of waiting for "that call." And I did not get the call for a transplant while I traveled.

It is a decision you and your doctor will have to make together.

[GAL14 in reply to WYOAnne]

thank you so much for replying my transplant coordinator so go and live life. My doctor is afraid of my crashing. I think 'll go for a short stay in Florida. The new kidney is my top priority in life. I want to do it preemptively while I still feel good.

[Jayhawker in reply to WYOAnne]

I’ve just been to the first day of eligibility testing for a transplant at this point; still don’t know that I’ll qualify. However, in the patient education I believe the nurse said that we have 24-48 hours to return the call when we get the call. Frankly, I was surprised by that timeframe. I’ll be double checking it if I find I do qualify and am added to the waitlist.

However, if I did hear correctly, I’d be able to get back to the hospital where I would receive the transplant from anywhere in the continental US easily. Also, this hospital is in the KC Metro area. They have patients who live on either coast. Clearly those patients have to fly into KCI after they get the call.

Anyway, as I heard this I thought that I’d be able to travel to professional conferences or for vacation while waitlisted without difficulties. But, again, I’ll need to double-check this should I join the waitlist. And, of course, it’s critical to not only talk with the transplant team about all of this but also to let them know where I am if I’m traveling. I’ll likely clear any travel plans I’m considering with them before making final travel arrangements.

Jayhawker

[WYOAnne NKF Ambassador in reply to Jayhawker]

Now when I had my transplant, in 1999, there were patients that came from the East coast for a transplant at U or WI. So, if your were from VA or maybe MD, you could get to WI in time for your transplant. We all didn't have cell phones then. I actually had a beeper, so the transplant center could pate me. Ha, ha...guess that really dates me!

[Jayhawker in reply to WYOAnne]

Yes, I thought about how much easier this is today specifically because of our cell phones. Clearly we’re fortunate today as compared with earlier years.

Jayhawker

[GAL14 in reply to Jayhawker]

Thanks jayhawker as you suggest I will go for it and travel in the US!!

[1transplant in reply to Jayhawker]

I was on the wait list for 2 years. During that time I inquired if I could travel out of state. They told me I could but that I would be temporarily put off the transplant list and that it was my choice. There is no "place in line", but if a matching kidney became available and I was not local enough, I might be passed over. Just make the right choice for you.

[Jayhawker in reply to 1transplant]

This is what I had expected to hear. I’ll definitely seek more explicit guidance from the transplant team should I find I’m eligible for a transplant and decide to move forward with waitlisting. I’m certainly a very compliant patient🐶

Jayhawker

[driffieldpaula]

On the diet subject. My dieticians told me to eat S normal apart from salt processed foods and fizzy drinks until they told me that I needed to

[WYOAnne NKF Ambassador]

I visited friends and family in the US, probably 2 months before I got THE CALL! After... I was hiking along the Highline trail in Glacier National Park in Montana when I was 8 months post transplant. No matter what the circumstances, you still need to LIVE.

[Philipjm]

Hi Gal, in the Uk there is no position on the list, purely on a match basis, if the central organ donor data base matches we get a call. I have had two calls, both a no go. I have to be within 3 hours of my transplant unit, if I am going to be a greater distance I telephone my transplant coordinator and come of the list till I am back home. NocturnalHHD works well for me and I live a normal life as possible, life is for living and not to be put on hold.

Stay positive and it will happen.

Philip

[GAL14 in reply to Philipjm]

Thank you so much I learned a lot from your thoughtful reply

[1transplant]

I received a transplant 7 years ago. I had been on the list for 2 years before getting a call. At that time, I was advised to stay pretty local, which I did. I was on PD method of dialysis which was my choice since I live in the Catskill mountains and winter road conditions might have caused a problem getting to a dialysis center. I did, however, visit family in Pa. which is about a 3 hour ride. My Doctors advised me to stay as close to the hospital as possible. My hospital was also 3 hours away in Albany, NY. So, my advice is to make sure you are able to get to the hospital ASAP when that call comes in, or you may risk the chance the available kidney goes to someone else while you are racing against time. They can't hold the organ for a very long time. My 3 hours was cutting it very close.