To Johnny Stephens

[Kathie]

Hi Johnny,

I read your personal history and it read almost verbatem for mine.
I also had Hodgkins about 25 years ago, they did a laparotomy, splenectomy, and radiation treatments in my neck and upper chest. The good news is that people are now living long enough to experience later-in-life problems from treatment. The bad news is that people are now living long enough to experience later-in-life problems from treatment. I wouldn't give up these last 25 years for anything, and thank God and my drs for them.

I had been told 15 years ago that I had Mitral Valve prolapse, but nothing to worry about and no real follow up. My first clue was about 4 years ago when I suddenly started passing out all over the place. I had never fainted in my life. My dr suspected it may have something to do with my anxiety disorder, but referred me to a cardio, who came to the same conclusion, but decided to run some tests anyway (LOL). All the test came back OK and I had one more test before they were going to write me off as nuerotic - the tilt-table. I failed miserably and they found I had 3rd degree heart block. They immediately implanted a permanent pacemaker, and did some more tests, resulting in the finding of my problems with my aortic and mitral valves.

They told me that the radiation had caused the electrical problems with my heart, and also the problems with my valves. They also discovered I had asthma (I live in a wind tunnel in the desert and there is no way not to inhale the dust).

I have the same symptoms as you described: Just taking a shower and doing my hair does me in for the day; vacumming does me in for the day; same with grocery shopping or anything that requires any exertion. I have zero energy and spend a lot of time napping.

My cardio says my valves need replacing, but keeps changing his mind about when. I have gone from mild to mild/moderate, and am now at moderate. He doesn't want to do it too soon, yet doesn't want to wait too long. He has never set the perameters for me, just said they will go by my symptoms as time for surgery.

I feel like I am whining about my symptoms every time I see him. I am scared to death of the surgery, but want my life back again.
I see him again on 6-23 for results of my last echo.

I admire the way you and everyone here have perservered and come through the other side. I hope I have the inner strength that you all do when the time comes. This is such a wonderful site, with wonderful people. I'm so glad to be here.

 

[Johnny Stephens]

Hello Kathie

Yes, your story sounds very similar indeed. If I could give you some advice, your wishes need to play into the decision about 'when' to do the surgery. You say "I am scared to death of the surgery, but want my life back again." It sounds like you are already symptomatic -- if it's effecting your quality of life you need to add that to the factors being used to determine the date. Echo results and numbers are all good inputs, but don't forget about the basic 'how are you feeling?'. In some ways I wish I had done mine sooner, as I spent a couple of years running in second gear instead of feeling really good.

For me, the laparotomy I had with my Hodgkin's was *WAY* more painful than the chest surgery for my valves. I recovered from it faster, but it hurt much worse.

You've found a great place; welcome aboard. Let us know how we can help!

-- Johnny

 

[Kathie]

Thank you Johnny,

You have already helped more than you know. Just knowing there are people that have been there done that is a comfort. Yup the laparotomy was a blast! Glad to hear this won't be as painful hopefully.....

I'm just gonna keep on "whining" about my symptoms until he gives me solid reason why the wait.

Thanks again and wishes for your continued health...

 

[Anne-Marie]

Hi Kathie,

I also have a history of Hodgkin's disease. I had radiation treatements to the chest and neck in January of '74 after a rt. neck resection. I had a laparotomy and splenectomy in '77 followed by a one year course of chemo (mopp). I've been in remission since 1978 (25 years this past March!).

I had an AVR April 24. The valve they removed was congenitally normal but very fibrous with no calcification. My doctor believes that is an indication that it had been damaged by radiation.

I'm glad you found this site, it's a wonderful resource.
A-M

 

[Kathie]

Hi Anne Marie,

It's nice to meet you, and you're right...this IS a wonderful place for not only resources but support. I didn't realize there were so many others who had been directly affected by radiation treatments for Hodgkins. I still laugh when I think about my radiologist - he was in his thirties, flaming red hair and had a very arrogant attitude. He just marched in (remember this was the mid 70's), told me that he had a 98% cure rate for Hodgkins in my stage, and that I was NOT going to screw up his record! I decided I liked him....as I had the same attitude at the time.

How is your recovery going? So glad that you have had it done already. Take good care.