Social Question

Unbroken's avatar

How does one go about looking for a doctor for an organ transplant?

Asked by Unbroken (9447 points ) January 19th, 2013

This is a personal need for me, not a curiosity.

After my latest flare up of my autoimmune hepatitis my doctor here said not only could he not help me, I am his second patient with this disorder, but that I needed to start developing a contact with transplant doctors, team. And he needed advice for how to treat me prior he was willing to conference with them. He did not have any recommendations or contacts. He said I had probably less then two years until the big date.

Said only that all major cities have transplant facilities and they all have to be good, so pick one with family or a support network nearby as I might not be able to work and may be waiting for months for an organ. Such a place doesn’t exist.

I have until the 31st of this month to find a doctor.

I thoink I have been handling everything emotionally alright. Even I think hypothetically knowing what will most likely kill me and knowing my end date will most likely be in my late 50’s or early 60’s. I can cash out my retirement early should I need it, and won’t have to worry about saving for old age and dieing a slow extended death or of alzheimer’s.

What I am struggling with is what criteria or how should I pick a doctor. I should stick with this doctor prior to during and after my medical procedure. That means a commitment and this is the person that I will put my life in the hands of. Which may just be business for the doctor, doing his/her job.

But I have always looked for the most qualified doctor in the past, even in town and yes that didn’t mean much here where essentially no one was qualified I only let myself believe that. Outside every one will be qualified.

So what qualifications or criteria should I or can I search for and how to quickly compile and filter my search?

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20 Answers

Adirondackwannabe's avatar

My prayers are with you. Try a hospital associated with a good college.

WestRiverrat's avatar

Which organ(s) do you need transplanted? There are facilities that specialize depending on what you need done. If you can’t find one near family, I would look for a facility that does the transplant you need on a regular basis and move nearby if possible.

Most people here go to Mayo Clinic in Rochester Mn.

Hawaii_Jake's avatar

All I can say is wow! You have my prayers.

To answer the question, you start with the Mayo Clinic as @WestRiverrat mentioned and work your way down from there. Believe it or not, I would start with looking it up in Google.

chyna's avatar

My brother’s wife was on the liver transplant list at Duke University in North Carolina several years ago. She had hepatitis C. She had a rare blood type, so although she was at the top of the list, she died before they could find a suitable transplant.
I would start with calling the Social Services department of the hospitals you have determined have transplant facilities and see if they can guide you in what you need to do to find a doctor, get appointments, etc.
I actually think @Hawaii_Jake has a good idea of googling and then researching the hospitals closest to you or where you may have family or friends that can help you with housing during appointments.
Hugs to you.

Adirondackwannabe's avatar

@rosehips I dealt with client that had a liver transplant. He lived a long and happy life. He had to take meds for the rest of his life, but you would never know anything was amiss if you met him.

Unbroken's avatar

It is a liver transplant. And thanks for all your help. And moral support.

wundayatta's avatar

There must be lists of the best liver transplant facilities and teams in the country. Match those up with communities you can see yourself living in. Then move. I think their idea about having a support network in these communities is important. I guess you could do this with social services, but it’s far easier with people you feel a connection to.

I wish you the best of luck with this. It can’t be easy thinking about it. From your writing, you are a deep person who thinks interesting thoughts. You write well. I hope it all goes well, if only selfishly hoping you will have many years to share your thoughts with us on Fluther.

jaytkay's avatar

@rosehips I understand your plight.

I have a close family member in need of a transplant. And my general feeling is “WTF!! I need to CHOOSE a good path?? Isn’t there AUTOMATICALLY a best choice!?? Is there a BAD option?? FUQQQ!!!!”

If you have to make a choice in the next 10 days, my only advice is choose a surgeon with previous successes.

Good luck and keep us posted!

hearkat's avatar

First, I am sorry to hear that you are facing this, and I wish you success in finding a great transplant team and with the surgery.

I would start with your health insurance carrier. You want to find out if your particular policy has any limitations on facilities you can go to or if doctors must be in a network.

Then I’d go to the web… there have got to be hepatitis and transplant support sites.

Once you have some places or names listed, start calling them and going in for consultations. As a patient, you want a team that communicates well with you – especially in listening to and respecting your concerns, and answering your questions clearly.

Unbroken's avatar

: ) limited time to reply. But excellent considerations and ways to tackle the problem at hand.

Lightlyseared's avatar

I seem to recall when Steve Jobs needed a liver transplant he choose a centre with a very low waiting time. That might be something to consider.

augustlan's avatar

Oh my goodness. I’m so sorry you’re in this situation! I wish you all the best, and will keep you in my thoughts. {hugs}

Starting with your insurer is a great idea. They may even have someone on staff who can guide you through the process. My best friend’s fiance was just put on the liver transplant list yesterday, so I will ask her more about it and report back as soon as I can.

hearkat's avatar

@Lightlyseared – From what I understand, the waiting list is a national registry determined by need. When an organ becomes available, they refer to those on the registry whose blood type matches, and to the person on that list whose need is greatest. I imagine that distance between the organ’s location and the potential recipients’ locations may also be a factor.

Lightlyseared's avatar

@hearkat From what I can see (and I admit I am no expert on the topic) organ allocation in the US goes like this. There are 58 organ procurement organizations (OPO’s) that retrieve organs for donation. When an organ becomes available recipients within the local area of the OPO are screened for suitability. If there are no matches then waiting lists in the surrounding area are screened for matches and if there are still no recipients matched then the organ is offered to anyone in the US who is a match. Therefore the potential exists for some areas to have shorter waiting times which is why Steve Jobs chose to be listed in Tennessee instead of California.
To complicate things further recipients are allowed to list at multiple transplant centres. Obviously listing at two centres in the same area will not make any difference as both would be offered the same organs but there is the potential (but not guarantee) to reduce waiting time to transplantation by listing at centres from different catchment areas.

hearkat's avatar

@Lightlyseared: I figured location has something to do with it. Steve Jobs could hop in a private jet and be at any center within hours, but regular folks don’t have that luxury, so what’s the benefit of registering at a center that’s a long distance away?

augustlan's avatar

BTW, my friend’s fiance will be using The UMMC Division of Transplant Services. It seems like the best thing to do is choose the place closest to you. Good luck!

Unbroken's avatar

One thing I am startled by is how many people know someone who is sick and in need of a transplant or received one or didn’t.

It is nice to know I am not alone. Not that I wish more people would join the circle. It has just been an isolating experience.

It hadn’t even occured to me the speed or how many organs a specific area recieves. Sort of gruesome because then it brings the necessary loss of life closer to the forefront.

It didn’t really help Steve Jobs to get on busier lists, I guess that is one factor I don’t want to consider. It may be efficient but seems so merecenary and callous. It depends on so much on matches there is enough rish involved limiting any pool. I would rather consider doctors cities money and climate and interests.

jaytkay's avatar

A few days after my father died, we received a note saying his donated corneas had been transplanted. The note was a happy surprise and a moment to be very proud of Dad while we were still adjusting to his loss.

augustlan's avatar

@rosehips Since it’s a liver you need, have you thought about having friends/relatives tested for being a live donor?

Unbroken's avatar

@jaytkay makes me glad I am an organ donor. It is hard to imagine what I would feel if a loved one died and did something similar.

@augustlan I am aware it could be a conceivable option. I have not brought it up to any one. I just can’t consider it at this stage.

Taking from someone, endangering them and reducing their overall all well being seems very selfish. Especially when my closest family also struggles with autoimmune disorders, not life threatening and manageable. But they are probably my best chance at a match, but their health is already compromised. What gives me the right?

It seems like easier, read cowardly, to take from the proverbial stranger. Someone who is an identical match to me further down the list that I know nothing about. I mean I can delude myself into thinking that person doesn’t exist or that they will have time to get matched.

Nonsensical and maybe as things become more desperate I will give in to the primal surivial at all costs mentality. But I don’t wish to.

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