Hi Mary,
Tomorrow is your big day. All the best to you for an easy road and a quick recovery! Looking forward to hearing how you are doing in the next few ...Read more
Hi Mary,
Tomorrow is your big day. All the best to you for an easy road and a quick recovery! Looking forward to hearing how you are doing in the next few weeks. All the best to you.
Mary, I also go to the same hospital. Same surgeon recommended to me. Although it has been yet to be determined who will be my surgeon. I look forward to ...Read more
Mary, I also go to the same hospital. Same surgeon recommended to me. Although it has been yet to be determined who will be my surgeon. I look forward to hearing what a huge success your surgery is.
I had a St jude valve put in 1996. Ive been doing great for over 20 yrs now and no probs Mary. Dont stress too much about the warfarin. I did the first few ...Read more
I had a St jude valve put in 1996. Ive been doing great for over 20 yrs now and no probs Mary. Dont stress too much about the warfarin. I did the first few years and it was for nothing. Get an at home monitor and just try to keep your levels in range. Its not near as scary as it sounds!! good luck!! James
Hi Mary,
I read your story and I too had radiotherapy for Hodgkin disease in 1989. Wind forward to 8 weeks ago and I had a heart murmur diagnosed which was ...Read more
Hi Mary,
I read your story and I too had radiotherapy for Hodgkin disease in 1989. Wind forward to 8 weeks ago and I had a heart murmur diagnosed which was causing mild symptoms but nothing I was worried about, it was by chance that the murmur was identified and as I have severe aortic stenosis I am now scheduled to have the valve replaced tomorrow with a mechanical valve.
I am 49 and really not ready for this, it's been a rollercoaster.
Keep in touch
Andria
Mary Rodriguez Hi Andria,
I am glad that you reached out! I understand COMPLETELY.. I am petrified. But I will say ... Read more
Mary Rodriguez Hi Andria,
I am glad that you reached out! I understand COMPLETELY.. I am petrified. But I will say the stories I have read on here have really helped calm my fears. Good Luck tomorrow. I will keep you in my prayers. Look forward to hearing how it all went. Keep in touch.
Mary
Rita Savelis Hello Mary and Andria. I had Hodgkin's in 1977.... and OHS in 2015, with 2 valves replaced (aortic an ... Read more
Rita Savelis Hello Mary and Andria. I had Hodgkin's in 1977.... and OHS in 2015, with 2 valves replaced (aortic and mitral)with mechanical valves and one valve repaired (tricuspid). My murmur was discovered about 6 yrs before surgery.
One is never ready, but one takes the next steps. That's all that you can do. It's all hard. And then you get through it.
One of the reasons a mechanical valve may be advised for you is due to the type of scarring you have inside because of radiation, and the specificity of your problem. Take care.
Andria Pugh Hi rita . Its not really something that i was warned about that my radiotherapy may cause heart prob ... Read more
Andria Pugh Hi rita . Its not really something that i was warned about that my radiotherapy may cause heart problems so this was a suprise. I wonder what % of hodgkins survivors have heart problems following radiotherapy. I read your story and you have been through so much but you will be strong and get through this next wave.
Sending my best wishes to you
Rita Savelis It's not something one is warned about really (just as many of the secondary side effects of OHS are ... Read more
Rita Savelis It's not something one is warned about really (just as many of the secondary side effects of OHS are not warned about), mainly because radiation therapy is often a life saving procedure at the time. The problem is having this kind of life saving radiation at a young age, so that you have a lifetime for secondary problems to develop (sometimes 30 yrs later..).
To be brutally honest, all radiation therapy (especially to the thorax) will have some effects given enough time. But radiation therapy and chemo are continually progressing as well.
I often wish I had been older when I had cancer! And OHS too!
But some who didn't have the harsh cancer treatment I had in 1977 (including terrible MOPP chemo) didn't survive.
You can't look back, only forward, and know that you are treated with utmost care when you've got this past.
Doctors are knowledgeable and deal with each problem as it comes up...thyroid, breast cancer, heart valves, etc...
Usually those who have had cancer are closely watched for future problems, so one can consider that one is protected by the close surveillance.
You can google "adult survivors of Hodgkins" to see studies, etc.
One can feel angry about one's lot, but then you take the next steps and move forward.
I'm good now. And I wish you the best.
Martha Dean Hello everyone! I am new to this site and just ran across your thread. I hope everyone is doing wel ... Read more
Martha Dean Hello everyone! I am new to this site and just ran across your thread. I hope everyone is doing well!! I too am a Hodgkins survivor, 1993, stage 2. Radiation has had its effects on my heart. I had a heart attack in 2015 at the age of 45. Next month I am having both the aortic and mitral valve replaced with mechanical valves, and they are adding a double bypass. I also don't recall hearing back in 1993 that radiation could do this, but even if I had, it wouldn't have changed anything. Back then, it was just as you said, take the next step, and the next one, and keep pushing forward. And that's where I find myself again now. Good luck to everyone!!
Jeanette Davidson Hi MARY ~ your story is similar to mine. I had Hodgkinsvas well and Aortic Stenosis. I wish you all t ... Read more
Jeanette Davidson Hi MARY ~ your story is similar to mine. I had Hodgkinsvas well and Aortic Stenosis. I wish you all the best!💓
Lynda Ruiz Wouldn't radiation for cancers of breast and lungs also potentially have same problem?
Mary Rodriguez Wow... awareness is already starting! I remember when I received my radiation in 1989, the risks were ... Read more
Mary Rodriguez Wow... awareness is already starting! I remember when I received my radiation in 1989, the risks were told to me. I specifically remember my oncologist telling me that I need to have mammograms starting at the age of 35. I had one at the age of 35 and then my husband became chronically ill. I stopped caring for me at that point. Eight yrs later, when I was taking my 83 yr. old mom for her mammogram, I made an appt. for my much needed mammogram. They had a recent cancellation so I was able to be seen in 2 weeks. The rest is history. I get real scared when I think of how different my life would have been if I hadn't made that appt.!
Lynda - to answer you question, I think radiation therapy is much better now. When we had it in late '80's, early 90s, it was given in very large doses.
I think the medical world is just starting to gather data on secondary cancers /illnesses caused by radiation.
I have BC sisters, now I have Hodgkin Heart sisters :) Good luck to all in your journeys.
Lynda Ruiz I have not had cancer or radiation, but was thinking of a dear friend and her breast cancer. Her fir ... Read more
Lynda Ruiz I have not had cancer or radiation, but was thinking of a dear friend and her breast cancer. Her first bout was 2006/07 when she did receive radiation as well as chemo. It came back 2014 and she has been undergoing chemo since, but no radiation.
Rita Savelis They usually won't radiate your chest area a second time, if you've already had radiation for cancer ... Read more
Rita Savelis They usually won't radiate your chest area a second time, if you've already had radiation for cancer once....
Hi Mary
yes this journey has been the scariest of my life..I have been lucky enough to very health up until I found out I had a bicuspid valve and would need ...Read more
Hi Mary
yes this journey has been the scariest of my life..I have been lucky enough to very health up until I found out I had a bicuspid valve and would need surgery at some point in time, which was 5 years ago.. at the time I put it out of my head as I was told , "its be awhile, if at all" so a while was five years.. Last year at this time I was getting ready for a trip to Ireland to celebrate my husband and my 30th wedding anniversary and month before I had my check up with the cardiologist with my echo.. thats when I got the news that it was time to start thinking of surgery.. let me tell you it was like a ton of bricks had just hit me.. What? you said it would be a while? thats when I started doing research and found this site.. There are so many wonderful people on it that have gone through the same thing and have answers that most surgeons don't give you as they just tell you what you need to have done and you get "you'll do great" really? can you guarantee me that? how do I deal with this all these fears of "heart surgery". I'm 55 and when I was a kid, heart surgery was a BIG deal. So, like most I started reading the stories and finally joined and Im so glad I did.. I've met some wonderful people I've emailed with and spoken on the phone with all who are willing to share their stories and help alleviate any of my fears.. I went into surgery pretty prepared as to what might happen but also knowing that the surgeons and nurses are trained personnel and they do this EVERY DAY.. I was as positive as I could be going in and kept telling myself that The Lord let me know about this issue so I could fix it and put me in the position to have it fixed and He would be with be along the way.. If you need to talk to someone Id be happy to do that, email me at formia0711@gmail and we can exchange numbers.. take care.