Transplant listing in other states

[Deanne]

I'm in Oregon. My family is in Minnesota. They want to offer support and possible donation, and I know they'd rather I have a transplant in Minnesota (my older sister phrased it as "it would be handier for you to be here."). If insurance allows it, what kind of difficulties might it entail to be transplanted halfway across the country? I don't think they understand the complexity of just getting listed and I'm not sure how to explain it to them so they understand without being more worried about it then necessary.

"Handier?" Um. No. Actually, it wouldn't be "handier" to travel back and forth regularly for several months while trying to return to work a full-time job and take care of a house, yard, and a half-dozen cats & dogs. From their perspective, sure it'd be easier, but their travel would be a one-time thing and I'd pay travel and lodging expenses for them. Maybe I just need to phrase it that way.

[WfMonkey]

I'm kind of in the same boat. I live in LA ad my family are in the UK. My brother has offered his kidney and I'm flying there next week for testing. From my perspective, if he is willing to risk his life and give up part of his body for the chance that it might help me for a few years (we all know they don't last forever), the very least I can do is go to his place to pick it up. Making him fly halfway around the world, drop off an organ and then leave just seems rude.

Having said that, I did enquire with my insurance company here, and they told me that they will reimburse travel and accommodation if either the donor or the recipient needs to travel more than 100 miles, up to $10k total. (accommodation is $50/day, which barely covers parking in LA, but it's better than nothing.

I know it's a pain to travel, but nothing about kidney disease is convenient. If you have someone who is willing to try to save your life, don't make it hard for them. Take the deal.

[Deanne]

I'd travel if it's the best way to handle it. I don't think my siblings will be accepted as donors anyway (my neph thinks they'll be rejected), so it's likely a moot point. It's just funny how my sister phrased it, like I'm going to run out to Walmart to pick up a kidney. How will you handle your post-transplant care? Do you need to coordinate your post-transplant care locally before you go to the UK for the surgery?

[mykey711]

It's probably good to be listed in any adjacent states that you can get to within 3-4 hours. Any further, and it's not practical. I'm listed in Michigan and Indiana and will try Ohio next fall.The work up is a little different at each center but some data is shared.

[WfMonkey]

I'm going on cadaver lists locally and only pursuing LD in England. My US nephrologist says it's no problem to do after care here, but I haven't broached the subject with the LA hospitals yet. I'm hoping to build a relationship with the transplant coordinators in both countries before I start asking difficult questions....

Bottom line is that UK hospitals have limited budgets and are trying to save money, and US hospitals are in business to make money. I imagine my scenario will work for both parties. Of course you need to confirm with insurance, hospitals etc, but if you are a source of revenue, they are unlikely to turn you away...

[Deanne]

Thanks. I think I'll take it one step at a time. Step 1: Get listed here in Oregon. Step 2. Let my siblings talk to the transplant coordinator here to see if they can donate (Likely not). Step 3. If one of them can donate, I'll talk to OHSU and my insurance company about the possibility of doing the surgery in Minnesota.

I hope yours works out for you between the UK and LA!

[WfMonkey]

 "It's just funny how my sister phrased it, like I'm going to run out to Walmart to pick up a kidney".

Actually that's the way I'm trying to approach it; like it's no big deal. I'm exercising as much as possible because I figure the fitter I am going in, the shorter recovery will be. I get too out of breath to run now, and my doctor tells me that y bone density is low so i shouldnt lift weights but I still walk at least 30 minutes a day and force myself to stretch and do a few sit ups.. I always park at the far end of the parking lot.  My goal is to be back at work in less than 4 weeks after my transplant. I know there could be complications, that my FSGS may reoccur, that the organ won't last forever, but I'm choosing not to focus on that. I'm choosing to believe that my brother WILL be a match, that the transplant WILL be a success, and that my life will be back to normal by thanksgiving.If I have to fly back and forth to England a few times, so be it. I've been saving for a rainy day for years, and guess what? It's raining.

 I've learned this year that I must take charge to make this happen; I can ask others for help but the problem is mine to deal with. I'm the only one who's life is on the line. My wife got scared and ran away from the problem, My nephrologist keeps dropping the ball, but I refuse to be a victim. Ultimately you are your only reliable resource - use it efficiently and you will get where you want to go. It sounds like you are starting to make progress to.