Shannon's Journal

Miriam St.Clair  Shannon, welcome to this site. All of the information here is useful and everyone here is so helpful with sharing their story and information. I'm so sorry this came on so soon after the birth of your child. It must have been very difficult to deal with health issues at what should be a happy time.

There are several of us here who have radiation heart valve disease from treatment for Hodgkin Lymphoma and have also received chemotherapy in addition to radiation. We have gone on to have successful valve replacements and repairs.

In mid-September of 2022, I had replacement of my aortic and mitral valve, repair of my tricuspid valve, and patching of my ascending aorta (aortoplasty). I had radiation in 1985 and about a month before the radiation in 1985, I had a median sternotomy for tumor biopsy. My radiated, scarred sternum was very lumpy and damaged and if anyone was going to have a hard time with a re-operation after radiation, all of the arrows were pointing at me. I'm also 71, quite a bit older than you. I did very well and after the first day or two post-op, I didn't have any pain.
About a month ago, I had a CT angiogram requested by my surgeon for follow-up and the sternum is healing very well, just as fast as anyone's, with no issues at all. They had to lyse the tissue lying beneath the sternum to get the sternum open (eek!) but I didn't ask about that or dwell on it since everything went so well.

I did a lot of research before my surgery and I found that the Cleveland Clinic specializes in these very complex type of surgeries involving radiation heart disease. Many centers would not have even taken my case so I was very fortunate to have the resources to go to the Cleveland Clinic but I'm sure there are other places, too, that would be experienced with this type of surgery. Since a re-operation can be risky, you may want to discuss with your surgeon the value of replacing the mitral valve rather than repairing it. Since the right side of the heart is a low pressure system, the tricuspid doesn't take quite the stress that the mitral does and a repair is often all that's required. Your surgeon will know more about this, though, and will be better able to advise you. If your aortic valve starts to develop issues, you would be eligible for a TAVR, which would be a great non-surgical approach, allowing you to avoid a second surgery.

Everyone is here to help and will have lots of good advice for you at this trying time and in the future, no matter what you decide to do. Best wishes to you in getting information that will help you make decisions.  Take care!

Shannon Cochran  Miriam, thank you for sharing your story with me! It has not always been easy to get doctors to understand my peculiar medical risks. Ive had to educate doctors most of my life about the potential for long term effects that plague Hodgkin’s survivors. I really hope the surgeon I’m seeing tomorrow has at least familiarity with radiation induced heart disease! 

Miriam St.Clair  I know it will be hard for you because of where you are located but are you able to get some additional opinions about surgical options? I know the Cleveland Clinic does virtual second opinions as do some other major medical centers. You'll want second opinions from surgeons at centers who've done a lot of these procedures and can advise you about complications. It's a very difficult and complicated procedure and not every hospital has a lot of experience with radiation heart disease. I met with surgeons where I live and several of them said they had done "hundreds" of these operations but it wasn't with Hodgkin's patients it was with breast cancer survivors who don't receive whole chest radiation. The lack of informed surgeons was very discouraging. It's a very rough surgery and requires experience on the part of the surgeon and the hospital. It's not a typical or standard heart valve procedure.

Here is a technical article from the Cleveland Clinic that you may want to share with doctors you encounter. It's very concise and complete: https://consultqd.clevelandclinic.org/radiation-associated-heart-disease-management-pearls-from-a-new-expert-review/

Here is another link for the cardio-oncology center at the Cleveland Clinic that is very informative for patients: https://my.clevelandclinic.org/departments/heart/depts/cardio-oncology-center#what-we-treat-tab

Shannon Cochran  I met with the surgeon today, who I really liked. The great thing is that he is actually employed by a bigger hospital in Denver, CO and is going to discuss my case with his team there and make sure they all agree with his plan and decide if the surgery should happen here in Cheyenne or in Denver. 

Miriam St.Clair  Oh, that is all such good news! I'm so glad you like you surgeon, which is so important, and he's willing to consult others about your case. Thanks to my bad geography sense, I didn't realize you're not too far from Denver, if you need the hospital there. Keep us all posted and let us know if there is anything ever we can help you with.