If you needed a lung transplant...

[hippuppy]

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My father has end-stage idopathic pulmonary fibrosis as well as COPD, DM-II (well controlled) and hx of a cardiac stent. He is looking into lung transplants as a 62 y/o.

He has been guided to Duke by another patient that he met who had a very successful single lung transplant.

If you needed a lung transplant, where would you go?

Thanks in advance.

Hip

 

[urge]

Isn't Pittsburgh the king of all transplants?

 

[lushmd]

Isn't Pittsburgh the king of all transplants?

At this point, as far as I know, Pitt (UPMC) is doing more lung transplants than any other program in the country. We do a fair number of heart transplants as well, but I believe that Columbia does more. Having said that, Duke does a lot of lung transplants as well and I'm sure that the OP's father would receive excellent care at either facility.

 

[Hernandez]

At this point, as far as I know, Pitt (UPMC) is doing more lung transplants than any other program in the country. We do a fair number of heart transplants as well, but I believe that Columbia does more. Having said that, Duke does a lot of lung transplants as well and I'm sure that the OP's father would receive excellent care at either facility.

Cleveland clinic surpassed Pitt as far as sheer numbers in 2009ish, and they stole Pitts surgeon Ken McCurry around that time as well.

as long as it's a decent sized program that does more than 10 (preferably more than 50) a year, it shouldn't be an issue. there are too many institutions who only do 1-5 lungs a year

 

[proman]

Volume is definitely important. Numbers from UNOS/OPTN:

2010: Pitt, 131, Duke 120, CCF 117
This year (March 31 2011): Pitt 28, Duke 33, CCF 18
Total since program start: Pitt 1,373, Duke 1,039, CCF 1,039

As for volume, I'd consider them equivalent and far in excess of what you should look for. Other things to consider: familiarity with transplanting IPF (which is much different than COPD or CF), how long the wait list is, how long a patient stays listed before transplant, mortality outcomes both short and long term. Finally, whether his insurance will cover a particular hospital.

Sorry to hear about your father. A lung transplant is a very difficult operation to get and the recovery can be extremely challenging.

 

[ProRealDoc]

My father has end-stage idopathic pulmonary fibrosis as well as COPD, DM-II (well controlled) and hx of a cardiac stent. He is looking into lung transplants as a 62 y/o.

He has been guided to Duke by another patient that he met who had a very successful single lung transplant.

If you needed a lung transplant, where would you go?

Thanks in advance.

Hip

Your father should seek care at any of the three institutions proman mentioned. They have enough volume to give your father the best shot at a successful recovery.

 

[WholeLottaGame7]

Ironically, I'm rotating through Duke's transplant service as we speak, so I can speak a little to that. I'm certainly not qualified to talk about Pitt or CCF though I'm sure they are equally great.

Just anecdotally from my 3 weeks on the service so far, I'd say that the breakdown is about 1/3rd IPF, 1/3rd COPD, 1/3rd CF, with the occasional rarer stuff. The transplant attendings I've worked with have been great, very different styles. Haven't really interacted with the CT surgeons though I've heard nothing but good things.

Duke seems to pride itself on the pre-/post-transplant attention to detail. Everybody has a dedicated transplant coordinator to help with medications/appointments/home health needs, etc. And everyone is tied into the Center for Living for aggressive pre-/post-transplant rehab.

It's been an interesting 3 weeks. A little busy, as the inpatient transplant census is 20+ patients, not counting the post-ops. I've gotten to see a wide range of outcomes following transplant, from very good to very bad. Very cool to see people doing well having had a BOLT in 1994, but also some very sad/tragic moments.

It's not a decision to undertake lightly, and I would definitely do plenty of research before making your choice. Best of luck, and I wish your dad and your family the best.

 

[jdh71]

post-transplant is also an important consideration - there can be a lot of issues post transplant and you can expect to travel

 

[MTGas2B]

Sounds like you're looking to stay east coast, but I'd throw University of Washington into the mix as well. Highest volume single surgeon (Mike Mulligan) lung transplant center, and they do a large proportion of IPF. On the pulmonary side of the house Ganesh Rhaghu is an IPF/ILD expert.

 

[hippuppy]

These responses are the reason I am constantly drawn back to this forum. I am starting anesthesiology residency as a CA-1 at Penn State in a few weeks and turned to you fine folks with this first.

My father is in Atlanta and thus the intrest to stay east cost. He met a woman a few days ago who had a single lung transplant at Duke this spring and has had very good results. Your words of caution about the complexity and critical nature of this procedure are understood. Ultimately my father will have to make this tough decision.

WholeLottaGame, glad to hear that your experience as a resident seems to match what my father's contact experienced.

Everyone, thanks again for your support and guidance.

V/R,

Hip

 

[objdoc]

How do you pick a hospital to get a transplant? Don't you have to wait on the list for a while? How do you get your insurance to pay for a transplant in another state?

 

[proman]

My father is in Atlanta and thus the intrest to stay east cost. He met a woman a few days ago who had a single lung transplant at Duke this spring and has had very good results. Your words of caution about the complexity and critical nature of this procedure are understood. Ultimately my father will have to make this tough decision.

I looked up the Emory numbers, they are in the mid 30s, which is above the cutoff for what's considered high volume. Maybe someone from there can comment on their program. Duke has a shortage of recipients. With the extended donor criteria used, we could be doing 300 a year. When a patient gets listed on the active list, they usually get transplanted within 10-14 days. As of March 31 2011 there were 15 patients listed. I'm sure they've all been transplanted or taken off the list by now. Again, this is all public information through UNOS/OPTN.

How do you pick a hospital to get a transplant? Don't you have to wait on the list for a while? How do you get your insurance to pay for a transplant in another state?

Money talks. There are so few transplant centers that the insurances cover multiple states and frequently give the patients a choice. I took care of one guy who came from Pennsylvania because his insurance would cover Duke but not Pitt. If you can afford to move and live in another (high volume) region, you do. It's what Steve Jobs did to get his liver.

 

[C.P.]

Hippuppy.

Here are a couple things I want you to think about.
It seems clear that you understand the severity of your father's disease.
Looking for "the best" institution is noble, and something I'd try and find too if it were my father.
I just want to maybe help redefine what "the best" may be for him.
It's not just about getting transplanted; it's also about the recovery, rehab, and also the waiting.
Lungs are temperamental organs that result in a lot of patients getting called in and then cancelled when the lungs turn out to be crap.
The recovery can be smooth, but it's not short.
The waiting period can be long, depending on where he falls on the waiting list.
the point I'm trying to get at is, I want you to think of all the scenarios involving his condition: getting a transplant, the operation, possibly not getting transplanted, the waiting, the recovery. Put all these together and now ask yourself where you think he'd be more comfortable staying (location wise), and where would also give him the best access to family/support networks.

I went to Columbia, I think they're fairly solid with lungs, but it's in Manhattan.
Putting him in position for a transplant there would mean relocating, and possibly being far from the rest of his family (jumping on a plane with end stage IPF for a transplant isn't gonna happen, so he'll need to be local and drivable).
If he gets transplanted there, what's his recovery going to be like, how much will family be able to visit/help.
If he spends a lot of time waiting, what's his quality of life going to be like while he's there (washington heights isn't Atlanta)?

There are a lot of good institutions to do a transplant at. Just take into consideration what your choice may mean in other scenarios too.
If you're going to Penn, Pitt won't be so far away (300 miles +/-) so you'd be closer, but Emory is going to be right next to home, which would mean he'd keep his existing care team and social/family support network.

 

[ecCA1]

You're listed as living in LA.

Have you looked into UCLA? Ardehali is very good and their numbers are well above the cutoff being used in this thread.

 

[core0]

I looked up the Emory numbers, they are in the mid 30s, which is above the cutoff for what's considered high volume. Maybe someone from there can comment on their program. Duke has a shortage of recipients. With the extended donor criteria used, we could be doing 300 a year. When a patient gets listed on the active list, they usually get transplanted within 10-14 days. As of March 31 2011 there were 15 patients listed. I'm sure they've all been transplanted or taken off the list by now. Again, this is all public information through UNOS/OPTN.



Money talks. There are so few transplant centers that the insurances cover multiple states and frequently give the patients a choice. I took care of one guy who came from Pennsylvania because his insurance would cover Duke but not Pitt. If you can afford to move and live in another (high volume) region, you do. It's what Steve Jobs did to get his liver.

If your father lives in Atlanta, I would definitely look at Emory (fair disclosure I work there). You have to remember that he is trading one disease (IPF) for a new disease (somebody elses lung). Follow up and after care are as important if not more than the transplant itself. He is going to need care and frequent monitoring for the rest of his life. One of the big problems with programs that draw patients from outside their area is that they are frequently dumped back on the community which may have limited resources or desire to care from them. As far as the program, the pulmonologists are great and the surgeons do a great job with perioperative management. The one year survival is above average as is the five year. They have been know for pulmonary HTN but they added a new pulmonologist last year who is known for IPF.