Alex's Journal

  Alex, isn't it amazing. My heartbeat was quite strong for a few weeks after TAVR. It has since quitened down. I think the heart is dancing with more efficient use of blood. My hope is that one day everyone who needs new valves will have the chance to experience tavr. I still can of believe it.

Barry Kanick  Alex,,,,,,,,,,,,on your Dec 22nd post you said the following>>>> "All the doctors say that radiation survivors should never do two open procedures because the adhesions that occur after the first open procedure lead to poor outcomes for second open-heart surgeries". ,,,,What exactly are they describing as adhesions??? ,,,,My Aortic valve story on "My Journal" page is practically identical to yours.

Rita Savelis  So happy to hear that your intervention went well Alex!
Now that your aortic valve is beating and not whooshing, hope that your mitral valve also functions well for a long long long long time! Take care.

Note to Barry Kanick: Each case of Radiation Associated Cardiac Disease (RACD) is singular. Radiation exposure is heterogeneous and patients can't be uniformly managed but require individualized surgical approaches. It sounds like you didn't have multi-valve problems, so your surgeons made a specific decision for your situation. Hope you're doing well with your new valve.

Barbara Wood  Glad all went well! May you have a smooth & swift recovery!
(My surgeon said my level of scar tissue from left side breast radiation was comparable to what he would typically see in a second ohs. My level of radiation (8 years ago) would be less than the Hodgkin survivors who would have recvd much higher doses.)

Barry Kanick  Greetings again Alex. When you should find the time,please send me an e-mail. >>> barry.kanick@volvo.com. ,,,,I would like to share an article with you.

Alex Sagan  Hi all. Great to find your posts today when I logged on!!! My incision soreness is fading fast, and I've been very active, walking and getting back to yoga and weightlifting.

Karen, I've also had a such a strong heart beat. Maybe the dancing you describe. And I have already danced at the bar mitzvah of a friends' son!!! Actually, dancing at parties was one place I had symptoms, so it was amazing to feel the change now. And, like you, I am still in awe of the procedure I've undergone--simply incredible.

Barry, I read your journal and am amazed how similar our stories are!!! Rita is right, of course, that there may still be differences in what course of treatment will be best. Your plan to a valve-in-valve TAVR down the road is very thoughtful. If I am lucky, that is what I'll do, too, though my mitral stenosis may require an open surgery at simone point. I've enabled you as requested.

Rita, thanks for following my story and for the post-operative good wishes. The TAVR should take some pressure off the mitral, though I think the opening (rather than the regurgitation) is the main issue. I have a follow-up echo tomorrow in Boston and will see how the mitral looks--hopefully, as you say, it will be good for many years.

Barbara, interesting about your radiation scarring. Sounds like your surgeon managed it. A friend was just asking me about whether her left-side breast cancer treatment could have affected her heart. I hope you are doing well with everything!

Warm regards to all.

Alex

Helen Daw  Sending prayers and positive thoughts your way! I just had my surgery 17 days ago and it wasn't that bad.

Gerald Poulton  The TAVR makes great sence in your situation, good choice sonce you are facing a second operation not to far down the road 👍

Alex Sagan  Thanks for your good wishes, and also for the encouragement of shared stories and your informed opinions. This community has been almost the only way for me to connect to others with similar issues, and I appreciate the virtual community that your sharing and mutual caring creates.

The surgery went well, with no complications. The OR at the Cleveland Clinic was a sight to behold, and Dr. Krishnaswamy is a master of his craft. My TAVR procedure was Monday morning and they sent me home Wednesday. Hard to believe I had valve surgery this week and I'm already feeling great. With twilight sedation, I hoped I would remember the actual procedure, but even though they say I asked some questions, I don't remember anything after they started my IV. My aortic area has gone from 0.74cm to 3.3cm, and measured velocity and pressure are dramatically improved. Slight para-valvular leak but the doctor says that amount is common and not problematic. The most likely complication would have been a pacemaker, but so far I'm ticking away without one, which is especially fortunate given my right bundle branch block. Amazingly, the sound I hear when I lie down to sleep has changed from a loud whoosh to a pronounced beat--the first time I heard that was stunning. So, I'm really happy about this outcome, and am hoping for some good years with my new aortic valve.

Good luck and good to all of you, ands please keep sharing your experience and wisdom.

Alex

  Alex, I am 60 and had Tavr procedure in October of 2017. I cannot tell you how awe inspiring it was, I was under conscious sedation and the procedure took no more than an hour.The next morning I was discharged and within 2 weeks was basically back to my normal self but with extra energy. Good luck with your procedure.

Barbara Wood  That sounds like a very good decision Alex, & a carefully researched one. The CC would have been my first choice, but my HMO only allowed for facilities in NH & ME. I did fine & am so pleased with my outcome, but the radiation exposure makes it all potentially much more difficult. So glad you made the decision you did...best wishes & let us know how it goes - there are a few of us irradiated heart people here!

Alex Sagan  Thanks all for the (spirit behind the) likes, and especially Karen and Barbara for sharing your stories and wishing me well.

Karen, your comments about the TAVR are inspiring and actually help me to be a bit excited for something that I have been thinking about more in a fingers-crossed sort of way. Interesting that TAVRs are becoming more common in folks our age. Was there a specific reason you were offered the TAVR? Seems like most youngish patients are still be offered open surgeries most places.

Barbara, I am working on the insurance stuff. I have a PPO plan so that helps. I am so glad you had a good outcome. It is really nice to know that there are other irradiated folks out there and around here. Long may we live in fellowship! But, it is a heck of a club ain't it?

  I chose TAVR for many reasons. My mother passed away after having her aortic valve replaced in 2001. She spent 90 days in ICU. My heart team at Sentara Norfolk have been involved with TAVR from the beginning stages and do 3 to 5 TAVR a week. My cardiologist said the newest valves for TAVR are performing as well as SAVR and he believes they will last as long. Also, they can perform another TAVR (valve in valve) if and when I need it. With the way technology is speeding along, I decided to go for the TAVR.
Hopefully you will have the same outcome as I did. I was home in less than 36 hours and only required two Tylenol for discomfort as the femoral site. It has been 3 months and I am walking 4 miles a day. All I kept telling my wonderful doctors and nurses was that I could not believe how easy the whole procedure was. Keep us informed on how it goes. Will be praying for you.

Alex Sagan  HI again, Karen. I am very sorry to hear about what happened to your mom. My step-father also died after several weeks in the ICU (following a stroke). It was a tough situation. My own decision was complicated by mitral valve questions, but I'm feeling good about the plan. My TAVR will be March 5. Hope to update you after! Thanks for the prayers, which I really do appreciate--I don't like the idea that I am now one of those people who need prayers now, but, well, I suppose I am. :)

Barry Kanick  To Alex,Karen & Barbara,,,,,,,,,,I had thought TAVR was only approved for higher risk patients that were typically much older people??? ,,,Or did they recently allow a 2nd tier range of somewhat younger people say between 55 & 65??? ,,,,,,In early 2016, TAVR wasn't actually offered to me whereas I did sizeable research just like Alex did & consulted various doctors @ Cleveland Clinic,Penn Medicine & Lehigh Valley Heart Institute. ,,,,,,My story is hugely identical to Alex's adventure. ,,,,,,,,That being said, I had the aortic valve replaced on July 5th,2016 & walked out of hospital 3 days later with no side issue whatsoever. ,,,,,I only accepted 500mg of extra strength Tylenol and barely needed that. I breezed thru the procedure with relative ease & hugely rehabbed myself being that I'm already sizeably athletic. I do expect TAVR possibly 10-12 years & possibly more down the road.,,,But I'm still a little perplexed as to how both of you were actually offered TAVR in 2017 & 2018???,,,,,"My Journal" Page tells my overall story.

Alex Sagan  Barry and I have been in touch about this, but in case others are interested, the answer from what I know is that TAVR is increasingly available for younger radiation heart disease patients because radiation damage can impair healing in a way that makes multiple open surgeries riskier. So, while TAVR was developed for patients considered "high risk" for an open surgery, it is now being offered in some hospitals to some people whom they categorize as "moderate risk." This is a relatively recent development, and while I was offered TAVR in Cleveland, neither MGH nor BIDMC in Boston could not offer it to me.

Rita Savelis  I'm sorry to hear of your situation Alex. I had Hodgkin's disease in 1977 as a high school student, and in 2015 (at age 54) I had my aortic and mitral valves replaced with mechanical valves, and my tricuspid valve repaired.
So I feel for you because Hodgkin's keeps on "giving" long after radiation is over.
My surgeons were specialised in this kind of post-radiation stenosis. Our chests have scarring and calcification inside and it's not advised to have multiple surgeries if they can be avoided.
With multiple valves replaced with tissue replacements, the valves can wear out at non-simultaneous rates, making it even harder, as one might go while the other is okay for a few more years. The mitral valve, especially, is a tricky and more difficult valve to work with. Most surgeons will try for a repair but this is not always possible and especially with post radiation stenosis.
Doing double valve TAVRs would put you in a "trial" because there is not enough data at the moment on how long these last. Many have high hopes for the future of these valves. There is just not enough data yet. There is no protocol for doing this type of surgery at your age without being part of a study. But those studies are happening and interventionists and patients are eager to try them.

Your case is very specific and I feel for you. No one deserves to experience radiation...and then OHS.
And you can't be compared to someone whose valves need replacement because of other issues.

It sounds like you are on top of the situation because you have gotten multiple opinions. You'll have to trust your gut and especially the experience of surgeons with post-Hodgkin's.

I live in Europe where TAVR was developed and okayed long before the US. But it wasn't necessarily a good option for my case, and for multiple valves.
But it is certainly done.
And patients have the final word.
A young patient like you would need multiple TAVRs, and there is less historical data on this.

Wish I could be more helpful.
There are definitely varying opinions, as you have seen. It's not a definite science.
So there is not a real "right" answer.

Wishing you the best as you go through this new ordeal, after cancer 30 years ago.
Take care.

Barbara Wood  Hi Alex, I had left side radiation for breast cancer 7 years ago & recently - 7 months ago- had ohs to repair my mitral valve. I did a lot of reading on surgery on the irradiated heart beforehand. It seemed the latest consensus is that TAVR would be preferred over the sternotomy. Being mitral, that wasn't an option for me - I had a sternotomy. My surgery was done by Reed Quinn in Portand ME. I would have preferred Mass General, they have a cardio- oncology center ( as does the CC). But I am 100 o/o + happy with my outcome. Dr Quinn said there was some scarring around the heart, comparable to a second surgery. My sternum & incision healed very quickly with no problems. I did have a pleural effusion - that was somewhat expected - but it was drained a few days after surgery.

I dreaded this so much, the radiation throws an extra wrench in there, but my outcome has been very good, I'll be out on my skiis this afternoon!

Mass General is highly rated, so is Brigham ( & they have a cardio- ontology dept too), as is CC. It's a very tough process, deciding which procedure & location to go with, but you will be in very capable hands at either, I'm sure.

Best wishes to you & keep us posted...

Civita Fahey  HI Alex, I did not have your issue with Hodgkins but, as Barbara said the Brigham and Women’s is one of the top hospitals in the area for valve surgery and other complications. I had my valve replacement there in April with the chief of cardiac surgery Prem Shaker.. maybe a second or even third opinion is something you want to think about.. I had 3 before I decided on the Brigham ( MGH being one). I felt the Brigham was slightly more advanced in this area as they were rated #5 in the country. best of luck to you

Alex Sagan  Dear Rita, Barbara and Civita: I am extremely
appreciative of your replies. It is very helpful to hear your stories and benefit from what you've learned from going through this. I'll write again with to pose a couple of questions. Thank you, again, so much. -Alex

Alex Sagan  Rita, Barbara, Civita, and anyone else following these posts: I have an update. After meeting with 10 doctors at 4 hospitals over 8 weeks, and sorting through three different treatment recommendations, I have chosen to do a TAVR at the Cleveland Clinic, and to live with my native mitral valve however many years it works well. The TAVR could be replaced with another TAVR when it wears out, but (based on current treatment options) it seems more likely that I will do an open surgery in a few years that will replace both the TAVR as well as my native mitral valve (which is likely to be more stenotic down the road). My hometown of Boston has great hospitals, and I was impressed with the doctors at MGH, but the doctors I saw in Cleveland have more experience with radiation heart disease, and they are able to offer the TAVR based on more experience with patients in my situation.  I am hoping for a successful TAVR in a few weeks, and hoping that this choice will work out for the best in the years ahead. Thanks for your support!

Rita Savelis  Hi Alex, thanks for the update. Your decision sounds like a good one for you at this time, especially if it can give you a few more years before the mitral valve needs replacing. The longer one can hold out before replacing that specific valve, the better. So the doctors decision to wait on it, if they can, seems logical. Glad you found good doctors with radiation heart disease experience. Best of luck. Take care. And please keep updating and posting. Hodgkin's patients and their stories interest me particularly!