Back from Baltimore/Johns Hopkins

[NikD]

Hi All,

I hope everyone had a nice holiday weekend! I had quite the busy week last week and wanted to send out a quick update. I had my appointments with Dr. Dietz and Dr. Cameron last Tuesday over at Johns Hopkins Hospital. First off, I wanted to say that it was so refreshing to speak to such informed doctors/staff, especially when it comes to Loeys Dietz Syndrome. While I walked in nervous/worried, they both seemed to have had this calming effect on me. After listening to their clear/thorough answers to all of my questions, I walked out of there feeling as good as possible about everything. Ultimately, after reviewing my images/test results, both doctors agreed that surgery would be in my best interest. Soooo... on Feb 3rd/2010, I will be undergoing valve-sparing aortic root replacement (David Procedure) and mitral valve repair. Even though I'm in Michigan, I feel like I'll be in the best hands over at Johns Hopkins so that's where I'll be having it done. I can't tell you how relieved I finally feel now knowing I'm going in the right direction. Dr. Cameron was able to make me feel so much better about everything. His outlook and confidence was great. All the praise that he's received on this forum and elsewhere are so well deserved. Although I know what's waiting for me post/surgery through the recovery process, I'm more at peace now than I have been in a while.

Now for the wait... 2 months to go...

 

[Danny]

Sounds like you had a great meeting. Just try to take it easy for the next couple of months. The waiting really is hard, but youll do great. Good luck.

 

[netmiff]

The waiting is the hardest part, but it sounds like you have everything else under control, so you really shouldn't be nervous, not much anyway!

It is so good when the "big guns" take the time and effort to talk with you as a person, and answer your questions.

I sure hope that the next 2 months go fast for you!

 

[Maryka]

As I have stated before on this list, I am very happy I had Dr. Cameron do my surgery. I also have a long history with Hal Dietz, who spoke twice to my Marfan support group back in the early 1990s. Great people! (Now, if I can only remember the name "Loeys Dietz" syndorme which I keep refering to as "that syndrome Hal Dietz discovered"--ha ha!)

 

[Mark Wagner]

The waiting is tough, but you will do fine. In the mean time, try to just enjoy life without worry as much as possible. A year after the surgery you will feel great. Have confidence. It sounds like your in great hands.

 

[Eva]

Good luck, Nick. Keep up the good faith and confidence you feel now. You shall do well.

 

[Maryka]

If you have time to notify me when you are there, I will come and visit you! I like to be there as a visitor instead of a patient!

 

[ottagal]

Nick,

Nothing liking having confidence in your docs to reassure you. That is half the battle. They certainly sound very experienced and knowledgeable. As we all know, the waiting is the hard part. Hopefully you can set some goals for yourself post-surgery with something to look forward to (i.e. vacation etc).

Be gentle with yourself and know that we are always here to listen and provide support.

 

[COLLEEN S]

Nic,
Welcome to the Hopkins/Cameron family, LOL! Seriously, Dr. Cameron is one of the pioneers in valve sparing. Mine couldnt be saved during my heart surgery but hopefully yours will! You are in the best of hands. Cameron will call you the night before surgery. You may get your time or day bumped around. Mine did. They are a teaching hospital, so sometimes the more acute cases get priority. Best thing to do would be to get a hotel room if you can. Also, my husband stayed with me (in my room, free of charge, with breakfast, daily!!!) and the staff couldnt have been nicer.