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Posts (14)

7 minutes ago · Radiation Induced Heart Disease in Heart & Blood Health

Keeping positive is a daily challenge. I tell myself I'm ready to go and I'm not afraid of dying, but then I get angry about all the things I still want to do before I die. As my abilities and mobility decline, I'm able to do less. I find that to be the most frustrating of all. The important thing is to truly enjoy and immerse yourself in activities you love. I love to read, and for the last 30 years have been so totally immersed in my career that I hardly ever read for pleasure. Now I can indulge that passion as much as I like. I read hard copy, ebooks, and listen to audio books — depending on my mood. One of my favorite things to do is listen to my audio book on my smart phone while doing laundry. It's a little thing, but I get that sense of accomplishment and being useful while listening to a fascinating story. Video chatting with my grandsons is a source of great joy for me. I'm able to spend time painting and drawing – other old hobbies I set aside while chasing the almighty dollar. Learning of my health condition, if nothing else, led me to finally retire. Without that, who knows how long I would have continued to work. Just look for the little things that "spark your joy" – that is the best way I know to stay positive.

22 minutes ago · Radiation Induced Heart Disease in Heart & Blood Health

Hi Marti,
You are so fortunate to be so close to Mayo! Our drive is about 7 hours, so even to go for a one day consultation is a major effort. However, Cleveland Clinic is even further away, so tempting as it is to check in there for a consultation because of their Radiation Heart Disease Clinic, that'll need to be a pass for us. There comes a time when you just need to put your faith in the skill of your doc/surgeon to handle whatever is encountered. My surgery at Mayo is a little over a month away, so I'm leaning into that and tamping down my tendency to keep wanting to investigate other options. I've got to get busy putting plans in place for family/friends to visit while I'm hospitalized and/or recovering there in Rochester. Temporary (affordable) housing is not easy to come by in that area – I guess because it is in such demand.

You always share such interesting/intriguing things 🙂 I'd never heard of Vitamin K2 until you mentioned it. I checked it out, but seems to be something I have to skip due to the blood thinners I'm on and likely to remain on indefinitely following valve replacement surgery.

It seems I've managed to acquire pretty much all the heart structural problems possible from radiation. Still, I have to keep in mind that I could be much worse off. The biggest challenge is to keep positive and focused on the good things in life. I could easily dissolve into feeling sorry for myself and retreating into a hermit-like existence. I fight everyday to keep as active as I can, and to communicate with family and friends about topics that are life affirming and uplifting. At the same time, I'm sounding the alarm to those I know who've had radiation to the chest for breast or other cancers. At the very least, they should consider having the CCS!

You are clearly focused on doing all you can to keep yourself healthy and expand your knowledge of your condition. I am certain that your commitment will enable you (with the assistance of your health care providers) to slow the progression of this horrid disease while more effective treatments are found.

18 hours ago · What to do when cardiac surgeons disagree? in Heart & Blood Health

Thank you for your kind words. I definitely have groups of hours where I feel no fear or anxiety about my health. The panic creeps into my dreams, and is hand in hand with me as I read articles and research studies that describe the many potential negative outcomes of various treatment options. I’m trying to practice meditation and journaling in an effort to calm my stress. I recognize that my odds for good surgical outcomes can be improved by a positive attitude. I’m working on it, and I really appreciate the support I’ve received from Connect members.

2 days ago · Radiation Induced Heart Disease in Heart & Blood Health

Hi Joan,
I notice that Colleen has not yet responded to you, so I thought I'd jump in with my 2 cents. I absolutely think it important that you talk to your doctor about the potential impact of radiation on your heart. Regardless of which came first. If you already have heart disease, radiation therapy could help escalate an existing condition. And it might not. But you should certainly alert your medical provider so that they know to watch for the signs.

2 days ago · Radiation Induced Heart Disease in Heart & Blood Health

Hi Marti,
I'm happy to answer your questions:

1. Stents were inserted April 2017. I was still in the process of seeking a diagnosis for my shortness of breath. All pulmonary and cardio tests found nothing. I went to a new cardiologist two hours drive from my home. This is the highest rated hospital in the state. She suggested another stress test. I said 'and what if that shows nothing of significance?' – which had been the case with previous tests – she said, then we'd do a cardiac cath next. I said then let's just do the cath. During that procedure, blockages of the RCA were found, and stents inserted. Problem solved — or so I thought…

2. No pain.

3. No heart attack (so far – knock on wood!)

4. Due to my experience, and what I now know, I would advise a candid conversation with doc/surgeon regarding the much higher likelihood of restenosis after stenting in those with RIHD. Considerations include the potential effectiveness of medication treatments, vs the risk to heart of a 100% occluded artery. Apparently, much depends on which artery is blocked. Also good to discuss any future surgical interventions that may be necessary, including CABG, and to what extent the stenting might further complicate those. My artery was apparently a challenge in that the blockage was at a 'hockey stick' point, or practically 90 degree turn, making stenting difficult. I was not as aware as I should have been that the cath was more than just a diagnostic tool; I should have realized more acutely that profound and unchangeable actions could be taken while I was having the procedure done. It is fortunate that you ARE aware and are asking all the right questions so that you can be well informed and manage your expectations accordingly.

5. There certainly ARE medications designed to fight the build-up of plaque (statins) and prevention of clots (blood thinners). Prior to my cath, I was taking no medication of any kind. Following what was learned about my condition during the cath, my cardiologist prescribed five: clopidogrel, atorvastatin, metoprolol, furosemide, and potassium. This procedure and an echo also revealed the valve issues and I received – for the first time – a diagnosis of congestive heart failure. Just a little icing on the cake of the CAD. If you and your doc agree, I suppose you could try the meds for a time and see if the progression of your condition slows or halts as a result of that and major lifestyle adjustments. Wouldn't that be wonderful? If you are having no symptoms at this time, your doc might consider that option reasonable. As we saw in the Widowmaker, stenting is pretty commonplace now, but it is not a magic bullet for everyone.

Let me know what you decide. These are not easy decisions. It is hard to predict outcomes for RIHD patients when each of our situations is so very unique. One awesome thing you have going for you is the fairly early discovery that you have it so that you have time to make adjustments in those areas of your life over which you have control – including having those candid discussions with your health care providers.

4 days ago · Radiation Induced Heart Disease in Heart & Blood Health

I completely relate to what you’ve described. I’m grateful for your insights. In fact, due to your mention of the documentary “widow maker’, I sought it out on Amazon and finished viewing it a few minutes ago. Had I this info back in 2017, I would not have consented to the stents — which ultimately proved worthless in keeping the artery open. Their presence may complicate matters for any future surgical intervention.

Most frustrating for me is that, like you, once I hit the 5 year mark and was among the ranks of the statistically cured, I was cut loose by my oncologist and no doc along my life’s journey since that time has alluded to my heart disease risk. In fact I’ve had perfect blood pressure, great cholesterol numbers, don’t drink or smoke, and have always tried to eat healthy with a focus on nutritionally dense foods. Even when I began to experience shortness of breath 4 years ago, the standard heart screening tests (ekg and stress test) were normal, so the first two cardiologists I saw moved me on to other specialists for other tests. When the internist I saw suggested that my symptoms were stress related and recommended I try yoga, I knew I needed to move beyond my town’s medical community. Mind you, through all this testing my breathing grew worse and I was struggling just to function at work. It wasn’t until the cardiac cath procedure (and stenting) that I began to realize just how serious my heart condition was. And a year after that when I continued to get worse, I was able to get a referral to Mayo. One echocardiogram later, I became aware of the existence of RIHD.

A CCS even as recently as 4 years ago could have made a difference. I’ve always disclosed my cancer and radiation therapy when giving my medical history. Not a single physician – until now – has mentioned the potential for heart damage and/or sought to check it out. How is this possible? In my recent digging for research studies and articles, I’ve found a few from as long ago as the 80s.

Kudos to you for learning all this less than 20 years after your cancer. I agree with you that patients need to know. And the medical community needs to be better educated about the need to monitor their patients who fall into this category. At this point, it may be too late for me to expect much from my heart – even with the valve replacement, there’s still the CAD. Time will tell. Meanwhile I busy myself with prepping the house for my surgery recovery period, disposing of extraneous possessions, estate planning, and spending time with my adult children and my grandkids.

BTW, the film was a real eye opener. I note that the doc so vehemently opposed to CCS is still at Cleveland clinic and still steering folks away from it as a diagnostic tool. Shocking!

5 days ago · What to do when cardiac surgeons disagree? in Heart & Blood Health

Thank you for these links. It is disconcerting to read these grim percentages, but I’d rather be informed than not. And yes, I will be returning to Mayo next month for preoperative consultation. I anticipate more concrete information at that time. Meanwhile, I’ll keep reading and worrying.

5 days ago · Triple valve replacement?? in Heart & Blood Health

Hi Carlysmith and yorlik,
I see your posts were over a year ago. How are you doing? I’m facing valve surgery next month and trying to deal with the intense fear that comes with ignorance. Trying to learn through the experience of others about this journey I’m about to take. I sincerely hope that your’s went well.