Donna's Journal

Timothy Andre  Donna, it’s so great to see your update and that you are in good spirits. We all knew you would do great. Welcome to recovery ❤️‍🩹 Take it one day at a time. 🙏🏽

George Gardopee  Donna- welcome to the recovery side.  It is sooo much better than the lead up to surgery. I think you’ll see that in a very few weeks it will seem like it never happened. 

Kristine Schroeder  Wonderful update, Donna. I’m still in the waiting game for my mitral valve repair. I love hearing these recovery updates! Prayers for you. 

Rose Madura  So happy to hear you are doing well! And I love the personalized pillow. Take one day at a time; rest when you need to and walk, walk, wall!

Kimberly Eisenhut  Prayers for you and your successful surgery and recovery! Will be keeping you in my thoughts throughout the day today. Hugs and love sent💗

Ann Zucker  Hi Donna! My mitral repair is the day before yours. I’m feeling very hopefu!  I think we’re both  going to rock it!

Joyce Shelby  All the best to you Donna during your surgery!  These doctors are truly amazing and you will be back on your feet in no time! 

Donna Carlson  Thanks, Susan! I keep thinking that keeping them in my mind’s eye and in my heart going in will pull me through. I have a new one on the way in September!

Susan Lynn  Absolutely, Donna! There's so much to look forward to - and another beautiful grandchild is fantastic motivation! Life is good!

George Gardopee  Donna: I struggled with the diagnosis myself for a year and a half before I had the surgery. I was terrified initially but over time I became resigned to it. In the end it was not nearly as bad as I feared it would be. I am in PA too (Pittsburgh area) and in the end I went to the Cleveland Clinic to maximize the odds of getting a repair. I was glad I did. I can recommend the CC enthusiastically. You are absolutely right to look for the surgeon that maximizes the likelihood of getting a repair. I was quickly shoved in the direction of a replacement after a bout with endocarditis. But luckily I took the time to read about the options before I proceeded.

I found the recovery to be fairly easy. I’m now 7 weeks out and I barely can tell anything happened. If you have the patience for it, you can find a detailed account of my own experience in my journal. The waiting and anticipation really is the worst part.

Mike Tirrell  Donna, coping with the diagnosis is definitely difficult, at least it was for me. Like George said, it just becomes a fact at some point rather than such a devastating blow. As far as going out of area, you should be able to check with your insurance company. If your request is rejected, you can appeal it. The folks at Mount Sinai in New York are very good. Good luck and best wishes.

Richard Munson  Fear is all part of the process. Not nervous, not normal. I was a mess until they put me under. My wife would say i’m still a mess but not true.

Ginny Turner  Hi Donna. I'll echo what those above have said. I'm from Texas, also have severe mitral regurgitation, am mostly asymptomatic, and will have mitral and tricuspid repair surgery (full sternotomy) in April at the Cleveland Clinic. In my case, insurance will cover in-network, but you will have to check your plan's coverage. I also experienced the shock and fear you describe - it's to be expected. Finding an experienced mitral surgeon who can repair the valves has eased my fears to a great degree, along with success stories like George's and Richard's. Mt. Sinai in NYC and the Cleveland Clinic are not far from you. Other referenced mitral surgeons who specialize in repairs can be found at the Mitral Foundation: https://www.mitralfoundation.org/reference-center-award/find-a-center
Good luck and hang in there! You're taking the right steps.

Phyllis Petersen  Grieving is actually part of the process when you get this diagnosis. I was able to travel to Cleveland Clinic with my insurance in 2016, but don't know if I need more whether I'll be covered. Get online or on the phone to find out what places are available to you under you insurance and then use this site to find info on the surgeons and ask a million questions until you find the surgeon who will be best for you. I was fortunate that when Dr. Gillinov was recommended to me I already knew his name and reputation because of the older version of this site. Adam Pick has been a blessing to many and the support you get here is incredible thoughout this journey.

Susan Lynn  Donna- You're gong to go through every emotion and that's perfectly normal. I was also worried about insurance coverage, but spoke to several surgeons that were and weren't covered. Most mitral valve surgeries are repairs - over 90% with an experienced surgeon and absent any significant calcification of the valve. As long as you're considering PA surgeons, I highly recommend Dr. Scott Goldman at Lankenau's Heart Pavilion (Main Line Health). Check out his YouTube video.
https://youtu.be/KaI9dUTRlm8
I would also recommend getting your surgery scheduled as soon as you can - waiting is the worst part! If you can get through that, you'll have no problem with the surgery and recovery! You can do it!!!

Kurt Mottweiler  I'm right there with you Donna. I just came back from meeting with a surgeon and cardiologist telling me I should wait to have surgery because they don't feel there is a 95% chance of repairing my bi-leaflet prolapse and once I get an artificial valve "the clock is ticking" (cardiologist's words). So on to the hunt for a confident "we can repair that".

Rose Madura  Yes, it is an emotional roller coaster. But I would be worried about you if you weren't nervous. Try to keep in mind that these doctors do this every day. I don't k ow about costs involved with a repair vs a replacement but wondering out loud if you couldn't call the insurance company and explain why you want to go out of state. Maybe in the long run THEIR financial burden will be lessened by your going to a top notch place for a repair. Money talks to the insurance companies. Also, it's great that you are taking the bull by the horns. Hang tough and please keep us posted. Godspeed.

Natalie Lau  Hi Donna! I am also in the NJ area! I'm from Monmouth county, I am currently 22 years old and I got my diagnosis of severe aortic regurgitation when I was a senior in high school... suffice to say the emotional turmoil has been brewing for quite a while. It's been almost 5 years and I still get emotional and hyperventilate when thinking about it... I mean I'm 22 years old and I've had doctors suggest mechanical replacement for years meaning I have had to really think about my reproductive life as young as 17... definitely a struggle and a good support system can help!

I'm not sure I can help much with insurance purposes but I have been seeing my cardiologist at NYU Langone for about 3 years now. Repair is a term I have only recently heard since I got diagnosed, but a welcome one from an NYU Langone surgeon. I do think they are great and NYU also has options for robotic mitral procedures, which are not an option for me with aortic regurgitation. Definitely check that out!

Donna Carlson  Oh my goodness, thank you all so much for the input and encouragement! It does my heart good (pun intended). I met with Dr loomiotis of RWJ/Barnabas health so far, on Wednesday I meet with Dr Phillipe Genereux of Morristown Memorial. And doing a ton of research, so I do have my list of questions and my intention to find a skilled surgeon focused on repair, with replacement as only a last resort. I will keep you all posted. God love and bless you all ❤️

Neal Syverson  Have you seen video of your echo?  My cardiologist did not and it lett doubt in my mind.  When my surgeon did it was clear it needed to be done and soon

Donna Carlson  Neal , I did. I sat there with the surgeon, and watched the red flow back into the left atrium, and as a nurse I was saying holy shit, that’s a problem. And then had to let that sink in that that was MY heart, that the regurgitation was happening right there as I was sitting there looking at it. It was surreal.