Why UNC-Chapel Hill?

You may wonder why we are travelling down to Chapel Hill, North Carolina for the lung transplant. And if you don't..then stop reading!

As most of you know Mitch has been followed by Dr. Mike Boyle of the adult Cystic Fibrosis (CF) clinic at Johns Hopkins Hospital for the past 10 years, approximately. Dr Mike Boyle and the CF team have been amazing both clinically and in their "bedside manner." I have the utmost respect for Mike Boyle, as he has always been professional, accountable, and approachable; sharing his personal cell phone number and email, with Mitch and I, and always providing the highest quality care to deal with the complications of CF, in all its complexity, over the years. So, because of our relationship with Hopkins and Dr. Boyle and the CF team at Hopkins, it made the decision very difficult- not only WHEN (because you can't wait until you are on death's door and hope to have success) but WHERE to have the transplant?

Mitch's dear friend, Ian, who also has CF and is from the area- (Rockville, MD), had a lung transplant at UNC- Chapel Hill 15 years ago. He has been the inspiration and hope for the procedure from the first words in my recollected consciousness Mitch spoke about the transplant to me because of his great success. I know sometimes it is hard to fathom the seriousness of the transplant but back than, the success rate for a lung transplant was much lower than it is now. It was like 50% chance of one year survival (it is now 90%), which is why it was so scary to consider and Ian's success that much more important to be aware of. Because Mitch had another friend, Charlie, who was not lucky with his transplant.

When Mitch and I first moved up here in 1998, we saw Ian at Cameron Seafood's on Rockville Pike and he cornered Mitch and with grave seriousness told him to "go down the Chapel Hill right away and get listed" and "that it was the best decision he had ever made", etc. Mitch, at the time, in retrospect, was much healthier than he is now but had begun to have bouts of hemoptysis (bleeding lungs) -which, by the way, is a very scary thing! - I remember how weak I was back then, in respect to dealing with Mitch's illness and the future-...and when Ian was talking about Mitch getting lung a transplant- I suddenly felt very dizzy and ill and had to go sit down in the car. I used to get physically panicky and faint when thinking about the transplant and his illness. I have become much stronger- but it did not come naturally, that's for sure.

Mitch and I visited Chapel Hill over the years. We went together in 1998, probably shortly after seeing Ian, and checked it out, talked to Dr Yankaskis who was a very respected Pulmonologist at UNC. Mitch was not ready at the time though. A few years later in May or June of 2000, he went again with his brother, Terry, right before I gave birth to Simon and Matias, and took all the tests in order to get listed. But they have since changed the way transplants are done- using a Lung Allocation Score (LAS) rather than waiting on a list for sometimes, years. Since Mitch was not ready for the transplant yet, he went inactive on the list. Over the past 6 years, he has gone down about once a year to check in and let them know he was still here- wanting them to know who he was for when the time came.

About 2 years ago, some of the docs at Hopkins began mentioning he should begin thinking about getting a transplant. Hopkins lung transplant program started to become much more competitive and successful with the addition of Ashish Shah, MD a badass cardio-thoracic surgeon from Duke. see resume: http://www.hopkinsmedicine.org/transplant/About/Shah.html
We started to change our mind and consider Hopkins as a serious candidate for the surgery. When Mitch and I started interviewing Hopkins and Chapel Hill to determine which place to have it done, we were really torn. The relationship with Hopkins and his docs and their concern over logistics- all the follow-ups and bouts of acute rejection started to really sway our choice. Hopkins is one hour away and Chapel Hill is 5 hours- big difference! Also when Ashish came into Mitch's hospital room and told him that he would find the most pristine lungs for Mitch and be at his beck and call after the procedure, well, this was promising and persuasive. ..he had such confidence in his skills.
However, the surgeon and the docs, are a large part but not all aspects of the transplant process. The other elements: the rehabilitation, the nursing staff, the function of the transplant wing, and the patient care coordinator are also very important. Chapel Hill won hands down in all these aspects. When we met with Becky, the patient care coordinator last spring at Chapel Hill, we were totally at ease. She is brilliant in her knowledge of CF and medicine at large, totally precise in her speaking and confident, optimistic, and also personable. She made us feel like she was totally going to take care of not only making sure Mitch was getting the best medical care, but that his needs would be met- and the needs of his family, and other aspects as well. She understood that this process required the backing of a network of support- that it was not just Mitch getting a procedure, but Mitch's whole family going through something HUGE.

Chapel Hill is selective and limited in how many transplants they do a year. They do about 15 a year, whereas hospitals such as Duke and Hopkins do as many as they can. Chapel Hill specializes in Cystic Fibrosis has specific experience in CF patients following the lung transplant. Chapel Hill has one of the oldest lung transplant programs in the country and their retired surgeon, Thomas Egan MD who worked at the flagship lung transplant hospital in North America- in Toronto-and is now a consultant for the surgical program and primarily an Academic at UNC med school (I believe), He trained the surgeon Ben Haithcock who will be the chief surgeon for Mitch's transplant surgery.

We met Dr Haithcock a few weeks ago when we went down to Chapel Hill a few weeks ago. He is not as impressive on paper as Dr Shah-see resume http://www.med.unc.edu/ct/files/Haithcock%20%20CV%2011-08.pdf see resume, but apparently his manual and technical skills as a surgeon are amazing. He performs the 6-10 hour surgery all by himself (he told us) and he has the fastest speed for putting the new lungs in- which is apparently very important because of ischemia, blood supply to the organ. The lungs only have 2-4 hours to be outside of the body so they must be connected quickly. Some organs can live outside the body much longer. It was cool meeting Ben, he was humble, for a surgeon, but obviously brilliant.

The lung transplant program has its own floor in the hospital. It is clean and quiet, the rehab, PT room is big and very impressive. The woman who heads the PT program is young, about our age, is funny, energetic, and strong. She is an example of the sample of health care providers that are drawn to and employed by the hospital. Because it is a college town, the town's vibe is youthful, enthusiastic, and optimistic.

So finally, from a holistic perspective, the setting of Chapel Hill also made it better choice over Hopkins. If you have ever been to Johns Hopkins Hospital, the last thing you would want to do, is step out of the hospital for a leisurely walk with your new lungs -it's in the slummy section of downtown Baltimore. Whereas Chapel Hill is a cute little hilly college town which reminded us of Gainesville, Fl. Chapel Hill is the perfect place to get a new lease on life, we decided.

Logistically, it is harder, but we hope this can and will all be worked out.

We will live there for at least 12 weeks post-surgery for rehab. Mitch will be in the hospital probably a minimum of 14 days after the procedure and than rehab is 3 times a week. Plus, there is a lot of acute rejection that occurs at the beginning so the anti-rejection drugs need to be closely monitored.

Here is a link to UNC- Chapel Hill explaining about Lung transplant and you can take a look at their program.
http://www.med.unc.edu/cystfib/trnsplnt.htm