D. Ramsey Unfortunately, we do not think that we will be able to help her with the percutaneous therapy for eit ... Read more
D. Ramsey Unfortunately, we do not think that we will be able to help her with the percutaneous therapy for either of her valvular lesions. We think that open heart surgery to address her valvular lesions with the coronary artery bypass grafting will be a better option for her, although it is high risk as assessed by Dr Tirone David.
D. Ramsey This is what Radiation Induced Heart / Valve Disease Looks like.
I hope to come through this on the s ... Read more
D. Ramsey This is what Radiation Induced Heart / Valve Disease Looks like.
I hope to come through this on the sunny side of the grass. Right now it doesn't look hopeful.
Understandably I'm keeping my eye on new developments in the field. Something called 'BASILICA' has emerged - a tiny ray of hope perhaps(?). Does anyone here or perhaps one of Adam's contacts understand this procedure?
Hope Farrugia Hello D. Ramsey, I see that you are from Toronto, Ontario, Canada, as am I. I also have Radiation In ... Read more
Hope Farrugia Hello D. Ramsey, I see that you are from Toronto, Ontario, Canada, as am I. I also have Radiation Induced Valve Disease (I had Hodgkin's Disease over 30 years ago). I had a Pacemaker Implanted on Nov. 7/17, due to 3rd Degree Heart Block (radiation damaged my electrical system) and I now have severe stenosis of the Mitral Valve. I have an appt next week to see a valve Specialist, and to decide where to go from here. Have you met with or have seen many specialists in this field in the Toronto area? I'd be curious to know who you have seen and especially Doctors who you have a good feeling about. The Specialist I am seeing next week came highly recommended as one of the top Valve Specialists in Canada. Hope we can chat!!
Method increases treatment options for high-risk patients who need heart valve procedures.
Rita Savelis Hello D. I had OHS with double valve replacement and a third valve repaired 3 yrs ago... with pacemak ... Read more
Rita Savelis Hello D. I had OHS with double valve replacement and a third valve repaired 3 yrs ago... with pacemaker implantation 2 weeks later. My heart problems were caused, like yours, by radiation therapy I had almost 40 yrs ago as part of Hodgkin's cancer treatment. So I hear you. It's hard. Your situation is a difficult one, but the surgeons who do surgery on patients like us are often specialised in this type of radiation induced heart valve disease. The positive part is that one gets extra special treatment because ones case is hard and top surgeons often like hard cases.
A TAVR procedure (which Basilica sounds like it's part of) is usually not an option when you need so much work done and when a surgeon needs to be able to get a good look at the radiation damage and make surgical decisions based on that.
I'm sorry about your renal problems, because that appears to be the biggest worry during and after surgery.
Take care. All the best to you. You've already been through a lot and I'm sorry that you have to deal with more.
D. Ramsey I believed we received e-mail notices to our comments on this site. Got that wrong. When I didn't I r ... Read more
D. Ramsey I believed we received e-mail notices to our comments on this site. Got that wrong. When I didn't I retreated to the FB support group for Hodkin Lymphoma (treatment) folks -and life.
Thank you Steve Farthing for the article. It's very hopeful and passed on to my Oncocardiologist. I'll let you know if BASILICA is in the cards next time they're shuffled.
Hope Farrugia of Etob. - Diane of The Beach has messaged you. We can't be more than 15 miles from each other. Hope we'll chat or connect soon.
And Rita Savelis - Man-O-man you've blown my mind! Can't tell you how much get-real grace
and gentle humour you add to this journey through your journal and shares. If you want to connect with others on the same path (Radiation Injured Heart Disease) there are terrific folks from all over the globe - U.S. U.K. Ca. Aust. New Zealand, Germany, etc. - roughly 400+ of us treated for HL/HD between 1960's - 1990's - in the group plus docs/nurses. We are sharing resources as well as just trying to sort thru the damage done by our respective 'cure'.
Still digesting your wonderful writing and the story it generously shares. I hope we can connect a little more about the team that treated you and any documentation about the challenges they faced opening up a radiated chess. (even bony ones like ours!) xo
Rita Savelis Hello D. Happy to hear from you and I'd be happy to join the post-radiation group (where to find it?) ... Read more
Rita Savelis Hello D. Happy to hear from you and I'd be happy to join the post-radiation group (where to find it?).... I have to admit that I am sort of hoping I have now had most/all of the side effects/after effects of radiation therapy... but I am probably dreaming. I live in Paris and my problem was detected about 10 yrs ago - before that I never even knew I might eventually get heart valve damage - silly me! I was "watched" for 6 years before surgery, and it was ultimately left up to me to go ahead and say "okay, let's do it... " when I was ready. I didn't feel cardiologists understood my specific situation as well as surgeons did. The surgeons seemed quite savvy and my case was immediately given to the head of the cardiovascular dept at the Hôpital European de George Pompidou. Unlike some of the stories I read on this site, I didn't search around looking for a surgeon or studying my case. I trusted the surgeon I was assigned immediately... On this site I looked for support once surgery was going to happen and then especially through the long recovery period. I definitely needed to hear from strangers who were going through what I was going through. Cancer treatment in California in 1977 was a much lonelier experience - I never met anyone who had Hodgkins back then and I just stumbled through it on my own. I am thinking about you and wishing you the best and feel free to ask me anything - email : ritasb@noos.fr
I am from: Toronto Ontario, Canada
I hope to come through this on the s ... Read more
I hope to come through this on the sunny side of the grass. Right now it doesn't look hopeful.
Understandably I'm keeping my eye on new developments in the field. Something called 'BASILICA' has emerged - a tiny ray of hope perhaps(?). Does anyone here or perhaps one of Adam's contacts understand this procedure?
A TAVR procedure (which Basilica sounds like it's part of) is usually not an option when you need so much work done and when a surgeon needs to be able to get a good look at the radiation damage and make surgical decisions based on that.
I'm sorry about your renal problems, because that appears to be the biggest worry during and after surgery.
Take care. All the best to you. You've already been through a lot and I'm sorry that you have to deal with more.
Thank you Steve Farthing for the article. It's very hopeful and passed on to my Oncocardiologist. I'll let you know if BASILICA is in the cards next time they're shuffled.
Hope Farrugia of Etob. - Diane of The Beach has messaged you. We can't be more than 15 miles from each other. Hope we'll chat or connect soon.
And Rita Savelis - Man-O-man you've blown my mind! Can't tell you how much get-real grace
and gentle humour you add to this journey through your journal and shares. If you want to connect with others on the same path (Radiation Injured Heart Disease) there are terrific folks from all over the globe - U.S. U.K. Ca. Aust. New Zealand, Germany, etc. - roughly 400+ of us treated for HL/HD between 1960's - 1990's - in the group plus docs/nurses. We are sharing resources as well as just trying to sort thru the damage done by our respective 'cure'.
Still digesting your wonderful writing and the story it generously shares. I hope we can connect a little more about the team that treated you and any documentation about the challenges they faced opening up a radiated chess. (even bony ones like ours!) xo