Barbara Armstrong - Heart Valve Journal

My Journal

3374 days ago

I am 11 weeks out from successful OHS for AS that was a result of radiation therapy for Hodgkins Disease at age 15, 35 years ago! All went well except I have ...Read more

I am 11 weeks out from successful OHS for AS that was a result of radiation therapy for Hodgkins Disease at age 15, 35 years ago! All went well except I have persistent large pleural effusions; they placed chest tubes on both sides that have to be drained every few days, I'm on high dose prednisone, and I'm discouraged. My lungs feel like they are on fire. I suspect this all follows from radiation to the pleura. The surgeons think I should feel "fine" now, and not fatigued and short of breath....but I have to sleep upright, have pleural pain with each breath. Has anyone else with chest radiation had these effusions? Any tips or idea how long they last? Thanks for being part of my "village"!

Rita Savelis Wow! Your story is my story! I had Hodgkin's at 15 and 38 years later (last April) I had 2 valves rep ... Read more

Rita Savelis Wow! Your story is my story! I had Hodgkin's at 15 and 38 years later (last April) I had 2 valves replaced and one valve repaired (plus pacemaker). The pleural effusions are most likely because of the scarring we have on our lungs. I had 4 pleural effusions. I didn't have drains - I had a "puncture" procedure done in my back - it takes only about 15 min or so, but liters of fluid come out! Each time I was SO HAPPY to have it done even if it was a bit uncomfortable because afterwards I could breathe so much better. My first puncture was about 3 days after surgery in intensive care and then I had 2 more in the next 2 weeks (I was still in hospital). The surgeons and cardiologists were quite skilled in doing those procedures. When I got home from hospital, (7 weeks after OHS) I once again had fluid in my lung lining and had to go back to hospital to have it punctured again and then stay a few more weeks.
Of course you feel fatigued and out of breath. You don't have the normal amount of room to breathe if there is fluid in your lung lining. One can have repetitive effusions, the doctors don't usually know how long or how many one will have but it is definitely linked to radiation therapy. But no one tells you about all those side effects until they happen...I feel for you. Hang in there. Take care.

Barbara Armstrong Dear Rita, I saw your story and this is why I was inspired to join the forum! I know that our bodies ... Read more

Barbara Armstrong Dear Rita, I saw your story and this is why I was inspired to join the forum! I know that our bodies are working hard against the late effects of the life saving treatment we had as teeneagers! I don't think there is a lot of research about this. Thanks for your kind and supportive words. I will indeed hang in there.

Rita Savelis I looked up "adult survivors of Hodgkin's" one time on google and realised I had had ALL the possibl ... Read more

Rita Savelis I looked up "adult survivors of Hodgkin's" one time on google and realised I had had ALL the possible later-in-life side effects....
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3224339/

Take care Barbara. Doctors are pretty aware of all this stuff - my surgeon specialised in valves damaged by radiation, and I think no one was surprised by multiple effusions in my lung linings.... Cancer treatment was hell and so was OHS and its aftermath, but at least I am an experienced patient!

Take care, Barbara

Care of the Adult Hodgkin Lymphoma Survivor

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3224339/

Of those individuals diagnosed with Hodgkin lymphoma, 85% will survive and may be affected by residual effects of their cancer and its therapy (chemotherapy, radiation therapy, stem cell transplantation). Hodgkin lymphoma survivors are at risk of developing ...