Valve Replacement due to cancer treatments

shop deals on amazon
Advertise with us
Shop deals on ebay
Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.
B

BionicWoman

Hello Everyone!

Well I'm a little late to this site, having found it only recently. Boy do I wish I had you folks a few months ago! I had MVR on June 4, 2007, at the Eisenhower Medical Center in Rancho Mirage, CA. So I'm 3 months post op.

I sure wish I had all this great information before my surgery! There was so much I didn't know, and I was shocked and scared about the whole thing. I didn't have much time to mentally prepare for the surgery. At first,they thought they could repair my valve, but once the operation was underway, they could see this was not an option. I received a Carbomedics mechanical valve. (I'm 47 years old.)

My recovery has been a big bumpy--several bouts of a-fib and a-flutter. One was serious and landed me in the hospital with an acute epsode of CHF. I was retaining fluid, not brething well, and my liver was starting to have problems. Thankfully, that all has resolved.

I am also a long term cancer survivor and my cardiac problems are secondary to the radiation and chemo I received in the 1980s. Is anyone else here dealing with valve replacement as a result of cancer treatments? I'd love to hear from you.

thanks all, good to be here!

Susan
Hodgkins Disease 1980 radiation, chemo, bone marrow transplant
CHF/cardiomyopathy 2002; MVR surgery 6/07
 
Welcome, Susan. There are many on this site who have had valve replacements due to radiation treatment. Put in a search for radiation treatment or Hodgkin's and you will quickly find them. Glad you found us and best wishes.
 
Susan,

I want to welcome to the greatest support site on the World Wide Web! As Phyllis said, there are many here that can relate with you on the cancer issue.

Have a great day and again, welcome.
 
Glad to have you. I wish you had found us earlier, too. There are some who have issues about radiation, like you. Maybe they will drop in to let you know their experiences. Blessins..........
 
Welcome! I'm glad you found us.

I'm also very sorry you have had a rough recovery. Some of us do. This doesn't mean you won't recover fully. You are already a seasoned medical warrior, I know you can ride this rough patch out.

Just wanted to mention our member Al Lodwick's site, in case you haven't seen it. www.warfarinfo.com will be a great resource for you.
 
Welcome to our world Susan. I am one of over a dozen members who have had VR surgery because of Radiation Damage to my Heart. Your case is interesting to me because most of us had our Aortic Valves replaced, with a couple of double (Aortic and Mitral Valve) replacements.

Sorry you didn't find us earlier but "better late than never". As was mentioned earlier, you can find most of the members of our 'exclusive club' by doing a search for "Radiation" or "Hodgkins". We have a few members whose radiation was for issues other than Hodgkins.

There is a STORY section under the main headings (go to the Home Page and click on STORIES). Under the Heading of TWO VALVES (or something like that) look for Johnny Stephens story.

It is important to keep up your regular examinations, especially EchoCardiograms at least once a year because unfortunately, Radiation Damage can be progressive. (My AV was replaced and my MV is heavily calcified but still functioning at reduced capacity). Dr. Lytle, the Radiation Guru at the Cleveland Clinic (#1 rated Heart Hospital) recently reported that Radiation Damage to the Heart often begins to appear 20 Years post treatment so you are right on schedule.

Be sure to request copies of ALL of your Test Results (Echos, Caths, Labs, etc.). I put all of the key information from my EchoCardiograms on a Spread Sheet to make it easy to see Changes and Progression of the Disease.

Many cardiologists / hospitals have a record department and one page 'Release of Information Forms' that need to be filled out and signed. Some may charge for those copies. Some may mail copies at no charge. My hospital charges $1 per page so for long reports I just ask to see the printout, read it in the office and only take Key pages or simply write down the important information in a notebook. My Cardiologist's group will mail out the Test Reports (but it takes a while!).

The GOOD NEWS is that all of these conditions CAN BE FIXED.

As one Doctor (a radiologist actually) told me, "You hit all the breakthroughs in Medicine at just the right time!"

SO, feel free to Browse around the site, read up on our fellow Radiation Survivors, and Feel Free to ask ANY Questions that come to mind. We are here to listen and offer information and support.

YOU ARE NOT ALONE !

'AL Capshaw'
 
Hello Susan,
Welcome to the club, I am also a Hodgkins survivor, I had an aortic homograph implanted almost ten years ago because of endocarditis this also happened to be almost exactly 20 years from the time of my radiation therapy. Unfortunately I am currently experiencing severe aortic insuffiency and require an aortic valve redo shortly.

I keep thinking that the darn cancer hasn't really given up and is still trying to do me in. I won't give up though have been dealing with one health issue after another for most of my life... just another bump in the road.

Good luck to you, hope everything goes smoothly from here on out.

Nick
 
Hi Susan - Welcome to the site; glad you found it! What took (brought) you to CA to have the surgery from NY? I'm glad things are smoothing out for your recovery. Take care and post again.
 
Wow! Thanks for the warm welcome. I will try doing some searches and see what comes up.

Al- I didn't know that about most of those with radiation histories have Aortic valve damage. I specifically asked my surgeon about that after the operation, and he said "you're aortic valve is FINE". I also had quite a bit of chemotherapy, not all of the drugs I had do I remember. But, I do know I had Adriamycin, which even at the time was known to be cardiotoxic. As a result, I have "non-ischemic cardiomyopathy" which is what may have worn out my mitral valve.

SusanB: Yes, CA is a long way for NY....here's the story on that. Buffalo NY is where I was born and raised and lived most of my life. However, a few years ago when my health started deteriorating and I could no longer work, I asked myself, "what do you really want to do in life that you haven't done?" The answer was very clear---go out and see the country! I sold the house, bought an RV, and set out to see as much as I could see. So, I travel all over all the time. I happened to be in SoCal at the time I found out I needed valve surgery....

Folks, I will be away the next couple days as it seems now I need a pacemaker. :mad: A Holter monitor shows I'm having cardiac pauses and I am fainting...so the doc says this is needed. I am getting a St Jude's BiV pacemaker tomorrow.

Thank you all again...I will certainly check in when I'm back from the hospital!

Blessings to you all,

Susan
 
Hi Susan!

Sorry that you've been having more heart issues, but I'm glad you found the site! Good luck with your new pacemaker. My mom is 55 and just had her aortic and mitral valves replaced on July 30. She had radiation damage from her Hodgkin's treatment in the 1970s.

Her recovery is also quite bumpy- still dealing with a-fib, fluid, nausea, hypertension from the fluid, and there is talk of a possible pacemaker in the future. Seems like stuff you are all too familiar with.

Welcome to the site, and best wishes on your procedure tomorrow.
-Katie
 
Hope all goes well with the pacemaker! Post again when you can. Take care.
 
Hello from another Hodgkin's Survivor

Hello from another Hodgkin's Survivor

Hello Susan--

I was treated for Stage IIA Hodgkin's in 1978-79, and developed Breast Cancer in 1990 from the radiation (I was treated with Radiation only). Did chemo for that (but no alkylating agent like adriamycin), and it was during my follow ups there that my oncologist started commenting about my murmur. When I started nursing school in 2001 my Health Assessment instructor recommended I see a cardiologist when she heard how loud my murmur had become. My valve area then was 1.50 cm2. I had periodic visits with the cardio, and had a TEE in 11/2004 that showed my area was down to 0.8cm2. Sent my test results to Cleveland for a second opinion--they ended up having me come up there in February for a workup, where I met Dr Lytle. Valve area then was 0.6 cm2 and Dr Griffin, my cardiologist there, said it was time to schedule my valve replacement. I had it done in May 2005, with Dr Lytle. I had to be readmitted to the hospital a week after discharge due to a pericardial effusion, but once that resolved I've had a great recovery. I have a little murmur now, not sure if it's the mechanical or my mitral valve, which had a slight bit of calcification when they looked at it before.
Sorry to hear you're getting a pacemaker but hopefully that will take care of things.
When did you have your bone marrow transplant? and Where? Just curious since I work on a BMT unit at Univ of Louisville hospital.
Carolyn
 
Hi Everyone,

I am back from my successful Pacemaker surgery a few days ago. Dr. Hongo at Marin General Hospital performed the procedure. I received a St Jude's Frontier II biventricular pacemaker. So far, so good. I've been SSSS the past few days--Stiff, Sore, Swollen and Sleepy! There have been no incidents of syncope or near syncope since I got the device.

Carolyn: I had my BMT in 1988 at the Cleveland Clinic. I seriously considered returning there for the mitral valve surgery, but I felt I had a good team on my case where I was, so I opted not to travel. I was dx Hodgkin's in 1980, stage IIIA, and I had radiation plus chemo at that time. I had two more recurrences and received chemo, then finally the auto BMT in 1988. That did the trick. I have not had any indications fo breast cancer, thank God. I know I am in the fortunate minority on that one, given my history.

:p Are you aware of the ACOR online group for Long Term Cancer Survivors? It's been a literal lifesaver for me. It was started in 1998 by a long term Hodgkin's survivor who just could not get the information she needed regarding late effects of her treatment. I highly recommend that group for any survivor.

This site is also a blessing...thank you all!

Susan P.
MVR, 6/07 Carbomedics mechanical
Pacemaker, 9/08 St Jude's BiV
 
Howdy, Susan - very glad to hear you got through your procedure OK. I'm a long-term survivor of Hodgkin's 1A as well, had my radiation and 2 surgeries in 1980/81. I thought I was done with big-ticket medical issues, but discovered my valve problems in 2002, which my surgeon was quite clearly convinced were the result of radiation directly to the heart.

I came out of the valve surgery with 2 St. Jude mechanicals. Other really cool things I've gotten to experience as a result of my radiation include hypothyroidism, and a permanently bald spot behind my right ear. It also pretty much guaranteed I would get the pacemaker I'd only dreamed about!

My sense of humor helps me cope - :D :D
 
You must log in or register to reply here.

Latest posts

Back
Top