Comments on: Heart Transplant By State

By: Hiland Doolittle

Hiland Doolittle — Wed, 26 Sep 2012 18:39:09 +0000

Dave, Is the prognosis that he needs a valve or a heart or both? In the case of the valve, there is a great deal of technology coming to market. The procedures are not invasive and the results are pretty outstanding. I think that the open-heart procedures would disqualify him from a stem cell program.

My personal e-mail is Cthodges@aol.com. If you would like to converse, contact me there and we can go forward. I sense your urgency and shall include you and your son in my prayers.

Is the vegetation a fungus? Regardless, that will need to be remedied before he would be eligible for transplantation.
I am not a physician, just a lucky recipient. But, I can point you in the right direction. Please study my heart transplant statistics posted today. There is hope.

By: Dave Kent

Dave Kent — Mon, 24 Sep 2012 00:19:37 +0000

I enjoyed looking at your stats and reading about what you should ask, etc…

I have a 23 year old son born with a Congenital Heart defect and has had 3 open heart procedures…(Blaylock, Glenn, and a Fontan) He was born without a spleen and has 1 valve. He has taken medicine his whole life. We need to get a Heart Transplant desperately.

He has developed endocarditis and is dying. A “vegetation” has attached to his valve and is destroying it. They have turned him down to be on the transplant list because of the complexity and the fact that he refused to take his medicine for about 6 months when he was 18…He learned his lesson but they supposedly they rejected him for that reason. We are meeting with the dr tomorrow to discuss the situation and what we can do. I don’t think he will last 6 months….I am desperate and scared….please. let me know your thoughts.

By: Michael R. Landess

Michael R. Landess — Sun, 12 Aug 2012 19:38:29 +0000

Do have any stastics or ratings or opinions on Christ Advocate Hospital in Oak Lawn Ill. I am presently doing my work up for a Heart Transplant and I believe that I made a good choice with Christ Advocate but would like to hear your opinion of their Transplant Team & center and Post Transplant support.

By: Hiland Doolittle

Hiland Doolittle — Tue, 12 Jun 2012 17:22:51 +0000

Thanks For Visiting Rachel,

If you read the last two posting, you will see what transplant centers are rated the highest by a number of criteria, including quality of physicians, nurses, etc. As I mentioned ypou need o talk with your insurer. They may have list of approved centers. What insurance do you have? They may not allow you to go where you want.

As mentioned, low-volume centers perform 6 or fewer heart transplants per year. Medium volume perform 7 – 15. High voume are more than 15 per year. I recommend a high volume center with a reasonable wait list. The top 50 transplant centers are listed on the site in the most recent post. I also aded the number of transplnts completed in 2011 and 2009 at that center and the number of people on the current wait list.

If you insurance carrier allows you to choos, you have other considerations, which will be discussed in my next articles. Keep in mind that post-transplant patiemnts require 24/7 support by you or famly or friends. Secondly, you need to stay within one half hour of the center for 2 months after transplant.

As I mentioned, the high volume ceters have the best physicians and the most ecxperienced staff. The trend is to higer volume centers. The Cleveland Clinic, the Mayo Clinic and others are highly regarded. Please reference the evaluations by US New Helath posted on the last article I posted.

Thank you, please stay in touch. My direct e-mail is Cthodges@aol.com. Regards, Hiland

By: Rachael

Rachael — Mon, 11 Jun 2012 20:52:35 +0000

Thank you so much for all of that information. My husband has not reached end stage heart failure, and we hope it is still a ways off, but will be in need of a heart and double lung transplant due to a congenital heart defect at birth and PAH. Since I’m a young wife and new to most of this, I’m still learning and finding out information to prepare outselves. I know you’ve focused mainly on heart transplant information, but in your experience, have you come across centers that are rated high for that type of transplant? I’ve perused the data on UNOS and OPTN, but since not many are done, its a small amount of data. I’d like to compare the centers that do the most heart/lung transplants (8-11 per year is high here) against the data on centers you’ve shown here with high ratings for heart transplants. I figure a center may do more heart/lung transplants, but if individual heart or single lung tranplants do not have high ratings or survival rates, we’d rather choose a center that just a couple less heart/lung surgeries if they have a significantly higher survival rate for heart transplate patience. We are in Utah and know we for sure would need to re-locate to another state. Sorry this is long, like I said, I’m new to this and want to do my best to provide the support my husband needs to have the best outcome:) Thanks also for your inspiring story and for giving a realistic account of your experience.

By: Hiland Doolittle

Hiland Doolittle — Sun, 05 Feb 2012 16:40:00 +0000

The statistics I used came from the OPTN website and were effective in January 2012. Thanks for your interest. Hiland

By: Don P

Don P — Wed, 01 Feb 2012 00:49:12 +0000

Hiland,

I follow your blog closely. As a fellow heart recipient I also follow the statistics involved very closely, which are a very important step in the process. I would like to point out that your 2011 stats from OPTN appear to be only through Oct 31, 2011 and not for the full year. Otherwise, GREAT post.

And, thanks for all that your do.

Don