Erin's Journal

Richard Munson  My acquaintances use lindcare and we live in massachusetts. Getting live people on the phone in 2024 can be a problem with many big companies even when you finally get someone on the line the incompetence can be amazing. I usually mumble something like “ thankfully they are at least working” after i hang up. I got so upset the other day at a major drug store chain over a prescription i finally got in my car and drove there thinking easy beans. OMG.

Kimberly Eisenhut  Richard is right! If at all possible, I always message any of my healthcare team in the "my chart" to ask any questions and for referrals, tests, etc. I get an answer more quickly and do not have to go through the 100 questions and "press this # to cennect with" stuff. I hope you have this available in your Dr/Hospital Network. Ask your Drs office, I am sure they have companies they can recommend. The NP or PAs are more helpful in my opinion with things like this. Or even your hospital would have companies, I would think they can recommend, as I am sure they set people up before leaving hospital. I hope you can find one that is more receptive.

Susan Lynn  Erin - We have had many folks who have had heart surgeries as a result of prior cancer treatment. I'm not sure if I've seen heart or lung transplants, but definitely valve repairs and replacements.
I'm glad that there's a great resource for cancer survivors and that many have found HVS beneficial in addressing their cardiac issues. All the best to you!

Patsy Stewart  Erin, I’m always excited to see your posts. You give me hope. I have never had this procedure, but I am a long-term Hodgkin’s Lymphoma survivor as well. I’m very thankful you were accepted into the trial. You run through my mind quite often, and I for sure will be saying prayers for you on Friday.~❤️

David Dunn  Hi Erin, I haven’t had my surgery yet, but have chosen to take part in a new study for the TAVR traschatiter aortic valve replacement. Hope your surgery went well.

Mike Tirrell  Hi Erin. I had my aortic valve replaced at Mass General earlier this August. Unfortunately, I don't know much about the tricuspid valve but I can say that the folks at Mass General were outstanding. You will be in very good hands.

Richard Munson  Ditto about mass general to repair my mitral valve. I can almost see marthas vinyard from my second floor window. Exaggeration of course.

Rita Savelis  Hi Erin. I had Hodgkin's in 1977 and OHS in 2015 to repair the damage to my heart from radiation therapy. I had my aortic and mitral valves replaced with mechanical valves. During surgery my surgeon also repaired my tricuspid valve when he saw it. I found out about it when I woke up. Radiation scarring is different on every patient, but it was not advised for me to have surgery again so they did as much as possible that first time. I feel for you and wish you didn't have to go through this again. Take care.

Erin Cummings  Thanks so much for these comments- very helpful. I had my aortic valve replaced with mechanical valve via OHS at Mass. General in 2004. Been there ever since. My problem now is that they won’t do OHS again, which apparently makes the tricuspid issue a bit tricky. Most of the non-invasive procedures are still in trial phase. Wish they had just given me a new set of valves 17 years ago!! Fortunately, it was only my aortic valve that was in trouble back then.

Deena Z  Erin, you might want to see if you can speak to any of the patients that have already been through the trial, if they have such availability.

Richard Munson  My surgeon, dr. Melnichouk at mass general just performed a surgery on a lady friend of our family that 2 other boston hospitals would not do. Yes, it was a mitral valve but it was a second or possibly third ohs and was very tricky i am told. I only mention this as a potential option. He might say the same thing but thought i would pass on his name. He was great throughout my entire procedure and our neighbor also sings his praises. Good luck.

Kimberly Eisenhut  Hello Erin, I have tricuspid moderate to severe regurgitation also. I have not had surgery yet, but would very much like to keep in touch, since it is very rare to find anyone with tricuspid problems.
I am in wait mode at this time, but have spoken to a surgeon at Northwestern in Chicago, Dr. Malaisrie, who Adam has interviewed, and he told me fpr tricuspid, it is mostly decided when surgery will be done by your symptoms as well as how well your heart is handling the regurgitation. I have not heard about the trial you are talking about, but if they are telling you it is the best possible outcome for your situation, then I would go ahead and try it. Never hurts to get a second opinion either. Please keep in touch so we can compare notes and Id be happy to ask my cariac nurse at Northwestern any questions you may have also. They are very eager to help us and very patient and kind.
Blessings, Kim

Kimberly Eisenhut  I forgot to add that he said I may be a candidate for minimally invasive, but of course that will depend on further test results when surgery is near. This is the hardest part for me, the waiting and wondering.
Do you have any symptoms from yours?
I do get much more winded when I do regular things now, such as walking up and down stairsn and cleaning the house. Last summer I could ride my bike a few blocks with no problem, but this summer, going one block is troubling. I go back for another echo in November as well as a cardiac stress test. We will see...

Rita Savelis  Hello again Erin. Just read your story and looked at Hodgkin's International and want to thank you for all that you do. I think I have had EVERY late effect possible after having had Hodgkin's like you at age 15. But the heart damage did not show up till 32 years later and I had OHS 6 years after that. So by that time all 3 valves needed replacing/repairing. I had already had thyroid surgery, breast surgery, early menopause and depression by then. And had breast cancer again this year + a digestive cancer as well. So, once again, I feel for you. You didn't deserve any of this but you have given so much back to the Hodgkin's community. Wishing you strength as you move forward and I do hope that the trial can work for you. I also understand why surgeons don't want to go in again. You need a very specialised surgeon who has already dealt with this type of heart damage. I was lucky here in Paris to be directed to a surgeon who had operated on radiation damaged hearts. All he said afterwards was that it was ugly in there. Heavy sigh.

Deena Z  Hi Erin, read your story. There has got to be a way to take care of your valve. I know that Adam had mentioned earlier the clinical trial for the tricuspid clip. Recruiting is still open.  https://clinicaltrials.gov/ct2/show/NCT03904147
https://www.heart-valve-surgery.com/heart-surgery-blog/2018/09/20/transcatheter-tricuspid-valve-repair/

Susan Lynn  Erin - You are perseverance personified! I'm certain you will locate the surgeon who can handle this procedure. You may want to reach out to the Cleveland Clinic since they're on the forefront of everything related to heart surgery. Dr. Joseph Lamelas at the University of Miami, Dr. Alfredo
Trento at Cedars Sinai in LA, and, my surgeon, Dr. Scott Goldman from Main Line Health near Philadelphia are high-volume, minimally-invasive valve surgeons who may be able to help you, too.

Please keep us posted. We're cheering for you! ❤

Adam Pick  Hi Erin.. Wow, you have been through a lot! Here's some information about the use of the TriClip in the TRILUMINATE clinical trial that might be able to help you. Let me know if you have any questions. https://www.heart-valve-surgery.com/heart-surgery-blog/2019/09/06/triluminate-clinical-trial-tricuspid/

Rita Savelis  Hi Erin. I had Hodgkin's in 1977. And OHS in 2015 to replace my aortic and mistral valves with mechanical valves. While in there, the surgeon also repaired my tricuspid valve (I didn't find this out until after surgery). A few weeks later I had a pacemaker implanted.
I'm sorry that you are faced with more heart surgery. It's the last thing you need. I feel for you. Hope doctors can find an easier way to repair your tricuspid valve. Take care.

Erin Cummings 
thanks all! I am trying not to worry, but it does seems that the solution may be more compicated for me becausd of my radiation history. Apparently OHS is not an option. Having trouble catching my breath doing just about anything. I'm reaching out to some carheldiac specialists for second opinions. Very much appreciate all the help from folks here.