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Monday, March 10, 2008

Time to Move


We have been living in Wisconsin for so long now that we have realized it is time for us to move on. No, not tomorrow or next month but we are working and planning towards our future in a new state. This is the part that makes any transplant recipient nervous; leaving their transplant hospital and finding a new one without risking their medical care.

Greg has been doing so well (92% lung function) that we hate to risk leaving the UW-Madison transplant clinic. It took us some time to realize that the reasons we went to that specific hospital no longer hold true for our family. First, we wanted Dr. Robert Love because he was not only one of the top lung transplant surgeons in the United States but he was a Cystic Fibrosis double-lung transplant specialist. Since Greg's lungs were so bad (10% lung function) and diseased, we needed and wanted nothing but the best: someone who knew how complicated CF lungs could be to remove (and a pain in the rear they were). But, Dr. Love transferred some time ago to Loyola Hospital near Chicago, Illinois. Therefore, he hasn't been our doctor in a couple of years.

Then we lost the other lung transplant surgeon that worked on Greg; Dr. Zink. He transferred as well shortly after Dr. Love. Last to go was Greg's transplant coordinator, Anne Marie. The 3 main pillars of support at the hospital, and the people that pretty much got everything done us (with amazing results), were gone. They were replaced with decent surgeons but now all Greg sees is the pulmonologist (not transplant doctor) and a new transplant coordinator that has cost us a ton on prescription refills because he can never get any of the prescriptions ordered correctly.

So, what is the real reason to stay? It is not because of the hospital. Sure, they have all his medical records and the respiratory therapists know him by face but that doesn't mean he is in any better hands then any other hospital. His medical files can easily be transferred and we can even get him evaluated by a transplant hospital in a new city we are looking at moving to before we even move.

Now, it is just time to narrow down our city choices. This will take some time and since we have at least a year until we are ready to move, we will make sure to do all the research needed before making such a decision. It is time to move beyond the dead trees and dreadful winters of Wisconsin and on to the warmer climate that allows us to enjoy more the second chance at life Greg has been given.

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2 Comments:

Blogger BreathinSteven said...

Hey Beautiful Lady!!!

I'd welcome you and Greg to Chicago, where we have your Dr. Love, but our weather just ain't that much better!!! We have two pretty spectacular centers -- Loyola, where Dr. Love moved, and UofC -- where a team of Loyola docs moved... I met Dr. Love a few times -- you're quite right... He's an amazing guy.

And I think I know what you mean about making transplant recipients nervous -- what feels like your safety net or security blanket seems to get slowly pulled away... But as much as we believe that our docs and surgeons are the best ever -- there are pretty incredible doctors and programs in a number of places... I'm sure you'll find one to your liking...

I hope you find a wonderful, warmer climate -- and I hope that you and Greg get to enjoy many, many years with his beautiful gift...

Love,

Steve
www.ClimbingForKari.org

9:41 AM  
Anonymous Anonymous said...

Dear "Time to Move",

I live in Capron, IL and just returned from Maywood's Loyola Medical Center after visiting a friend of ours who received a double lung transplant performed by Dr. Love. Our friend lives in Chemung IL near us (also near Harvard, IL.). She is doing exceptionally well and is actually setting records in recovery (removed resparator 4 hours after transplant!)

I understand your reasoning. My wife received a kidney transplant at UW Madison 5 years ago and their medical team, sergeon, coordinator were also key to the success.

We are about 1.45 hours drive from Loyola, but that wasn't an issue for my freind. It was close enough. We are a farming and rural community but have acces to I90 in about 30 minutes drive. You may want to consider this area if you desire a rural setting and the commute is acceptable. This is about the same commute we have to Madison for my wife's regular visits and this has been workable for us.

Gary Fanson
(815) 569-2493
gfanson@verizon.net

10:18 PM  

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