Maralize's Journal

Rita Savelis  I also had radiation as a teen (Hodgkin's in 1977) and consequently much heart valve damage many years later as the radiation stays in your system. In 2015 I had heart valve surgery to replace my mitral and aortic valves. During the same surgery the surgeon looked at the tricuspid (unbeknownst to me until afterwards) and repaired it. I also had complications following this triple valve surgery, or at least a much much longer recovery than 99% of those on this site. I feel for you, and hope that you have a surgeon who is experienced with tho se who have radiation-induced heart valve stenosis. Only he/she can really tell you what he/she thinks of your specific case. I completely understand wondering if you can go through it all again as it is physically and mentally exhausting.  Take care. I wish you the best.

Maralize Barnard  Thank you so much for this Rita. I also had Hodgkin's. I wish someone prewarned me about what can come later along the line. I also wonder why the surgeon didn't sort my tricuspid out at the same time but have to trust I suppose that they did look and then made the right call. It really helps to hear someone else has had a similar experience. My family is scared of losing me and my youngest is only 13. My oldest is getting married in 2023. Worst is the cardiologist kept pushing me saying it will get better it's in my head. The same one that first reassured me that there was nothing wrong with my heart & after a follow-up admitted me immediately. Unfortunately I'm at the mercy of the public system here in NZ. 

Patsy Stewart  I haven’t had anything done with my tricuspid valve, but I can relate to the radiation damage to your heart and other areas of your body. I had Hodgkin’s Lymphoma in 1982. I would agree with Rita about having a surgeon who is familiar with radiation damage. I wasn’t privileged to having a surgeon who specialized in radiation damage. Is there another cardiologist that you could see for a second opinion? Perhaps they could do the procedure where they can go through your groin to fix your valve. I’ll attach the link to this information. 
https://www.edwards.com/pages/TRISCENDIITrial?utm_source=google&utm_medium=ppc&utm_campaign=14589901839&utm_content=127880695856&utm_term=tricuspid%20valve%20repair&gclid=EAIaIQobChMIt_ytxdaz-AIVQyGtBh3WrwtPEAAYASAAEgLCM_D_BwE

I would also suggest getting a different cardiologist if that is possible. The one you have would have lost my trust in him. Sending prayers that you get answers and that they can help you. ~❤️

Rita Savelis  Maralize, A lot of doctors have never had experience with radiation-induced stenosis, and it's true that patients are rarely informed of possible late effects when they are being treated for cancer. You might want to look at www.hodgkinsinternational.com or the private facebook group: "Hodgkin's lymphoma/ disease survival & late effects 1960-early 2000's"  where you can find people like you sharing information about living with the aftereffects of Hodgkin's treatment.  A cardiac surgeon's opinion is more important than a cardiologist's at this point if there is any way you can see a surgeon to get his/her opinion on your case. So sorry that you have to go through this.

Miriam St.Clair  I'm a Hodgkin lymphoma survivor, too, Marlize, and I'm so sorry you're having to go through this. I'm fortunate to be able to get some second opinions about my heart issues, which is not the case for you. Rita is correct, though, about getting a surgeon's opinion, if that's possible. My thoughts are with you, this is so difficult.

Maralize Barnard  Ladies, thank you all so much for you kindness and care. Not feeling alone in this makes a difference already. You have gone through so much yourselves. I'm definitely going to have a look at the links. Sadly I only met my surgeon the day before my operation last year. I'm willing to fight, just need some good Drs by my side. I've got so many prayer going out for me and am so thankful for everyone.