I haven't posted on here for a while for many reasons (including the whole COVID thing) but as I'm still trying to get my head round stuff and had questions, I'm hoping there are some of you out there who can offer me some ideas/support.
I'm currently seen at the Brompton, where I've just spent the last week as an inpatient in their cardio-oncology service. I had stents in my heart summer 2019 and they were declared patent in autumn 2019 after a hospital admission. I had another hospital admission last autumn because my GTN spray wasn't working and they were seriously worried I was having a heart attack. (Thankfully I wasn't) I understand that stents do get blocked, but does it happen so soon? There are also other things going on that indicate likely disease progression.
I'm a counsellor myself and looking for some additional support , and probably via the hospital or something as well, because although I have lived with the leukaemia for over 10 years now, the heart stuff feels much more scary. How have any of you adjusted to that or what things have been helpful? Because my issues are linked with the stem cell transplant I had for the leukaemia, I feel a bit powerless about what I can do too.
Thanks for taking the time to read this
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SomersetJo
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It is late here, and I am finally sleepy, but I wanted to reach out to say you are not alone. I had two stents placed in my right coronary artery ten years ago. I was diagnosed about a year later with leukemia. I have been in remission for eight years now. I began having further cardiac difficulties about three or four years ago. The lower stent is completely blocked and the artery cannot be further stented. By exercise and judicious use of sublingual nitroglycerin tablets, I am pushing forward to try to develop sufficient small corollary arteries to avoid further damage. I really would like to correspond further, but I truly do have difficulties sleeping and have learned that when I feel like I could sleep, I should sleep. Goodnight.
Thank you so much for taking the time to reply. I know that in my leg they mentioned 'collateral vessels' I imagine that's something similar? Yes, part of my heart was totally blocked so they couldn't stent it a couple years ago and they said there would be no point as that part would be 'dead' already. Rest well Jx
I had five stents March 2017 after a heart attack.
Autumn 2017 I started getting angina symptoms again. However my GTN was making me feel better, and that was one of the indicators that it was indeed angina.
March 2018 I had another angiogram and they found many blockages including two of the stents blocking up.
My cholesterol was really low but I lost my father and brother both at a young age due to heart attacks so it’s in the family.
March 2019 I had a quintuple bypass (CABG x 5).
So basically within ten months after having stents I was having angina symptoms again.
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My name is Bond, James Bond, and I take my aspirin shaken not stirred 🍸
I love your tag line. That sounds like quite a journey, and interesting your stents have blocked quickly again too. And my cholesterol is low as well. (thanks to meds, it went weird after transplant and drugs). How are you finding life now? Thank you for replying.
Yes, I was and am concerned about my arteries and two stents blocking so quickly. My cholesterol at the time of my heart attack was 7.2. By the time I had my stents three months later it was 2.7. (Currently it’s 3.7).
I was eating correctly, just over the 14 units a week of alcohol and generally living life as good as I could. Still within 10 months they were blocking back up.
Some people say you must have had a bad diet. Well in my case that’s not true, that’s why I mentioned my family history of heart attacks.
I had my quintuple bypass on Monday. I was back home five days later having a steak and a glass of red wine. I felt I deserved it and needed the protein. I still have red meat (the size of a pack of playing cards) once or twice a week (mainly once) and I try to live by the BHF diet sheet (you can find it on their website). So basically I live healthily. But I still balance that with living a normal life.
I don’t have takeaways now unless I know what’s in them. I make my own from sauces and ingredients that’s not high in sat fats.
You can eat a good healthy lifestyle with good interesting food if you do your research.
I haven’t eaten a full bar of chocolate in one go since December 2016 and I used to be a chocoholic. But actually I don’t want it anymore.
The smell of beef burger from a fast food place is now enough to turn my stomach but I love the ones we make ourselves made from lean beef.
12 weeks after my op in March 2019 I was out riding my 900 cc motorbike at the age of 65.
Now, at the age of 67 I have not long finished tiling the floor and putting a new suite in the bathroom. And I am just going to do another.
I now do a little bit of gardening and I’m due to complete painting the rendering outside my bungalow. Pretty good for someone that’s had five stents, five bypasses and is 67 years of age!
I’ve had up and down moments though. Some days I feel tired. I recently had my Bisoprolol adjusted from 2.5 mg to 1.25 mg because my heart rate was dropping to around 44 at rest and that was making me feel woozy.
Feeling ok now. I mean ok for someone that still has angina. I still get a little out of breath but I still enjoy my life.
Of course I get a little worried sometimes, I’m not brain dead! But I’m so glad to be here, my father at the age of 53 and brother at the age of 62 wasn’t soo lucky.
I have found the NHS brilliant after my heart attack and simply cannot fault them. I wouldn’t be alive if it wasn’t for them so I’m my book "they walk on water".
By the way - I’ve had to sell my bike due to knee problems so I bought a two seater 3 litre V6 convertible whoohoo that’s fun. 😂
Hope that’s helped to alleviate your concerns a little.
That’s a bit of a handful you’ve been dealt. But you sound a really positive person. I might be at risk of suggesting something far too obvious, but your word ‘powerless’ really jumped out at me.
My similarity I think is the feeling of helplessness I had, when I had repeated HAs, lots of stents, bags of changes of meds and different investigations. Each time I had to pick myself up and try again and again to make some progress.
I learned that focussing on v small achievements helped, however small. I remember feeling great when I managed to get to the counter of a cafe I love, and order our coffees. The previous time I had to be helped to a chair. So that was the kind of small step that was progress. The helplessness began to fade.
I have a very different life now, and it’s good. Whatever hand we’ve been dealt we somehow must make the most of it. Good luck. Be good to hear how you are getting on.
Thank you so much for your reply. And it's encouraging to hear about you have worked through stuff. I hope I will get there but at the moment it feels so scary. I'm glad your life is good and better. I'm kind of mulling over my priorities at the moment.
The painful truth is that stents (and also bypass surgery) do nothing to address the underlying heart disease. These interventions are aimed at the symptoms rather than the disease itself. Neither can medication bring about a cure, hopefully medication slows down the progress of heart disease, but there's no medication that can make diseased arteries healthy again.
Life style changes are an important component in treating heart disease, at least as important as medication. And when implemented seriously, and in conjunction with medication, then you significantly improve your chances of slowing heart disease down to an absolute crawl. But it's a life long commitment to no smoking, maintaining a healthy weight, regular exercise, a healthy diet with no processed foods or take-aways, regular sleep, moderate drinking, and managing down stress levels.
Get all these things right and for most people there's still reason for optimism, in the same way that you've learnt to live with cancer you can also live a rich and full life with heart disease.
Incidentally, my wife is a councillor, and I found her support, love, and companionship pivotal to my recovery following my own heart surgery.
Thanks for your reply. And I'm glad things are going well for you - it's encouraging you are able to live a rich and full life now - I'm still at the 'rabbit in headlights' stage. I'm looking forward to increasing my exercise as I was advised to pause it for a while because of the angina. Can't wait for swimming pools to open so I can safely do that again. I've never smoked, and I've had a healthy low fat vegetarian diet since my teens (I'm 51 now) so I think that adds to the powerlessness for me, because there's a limit to what I can do about it, if that makes sense? Thank you for encouraging optimism.
Hi Jo. Total admiration to you for your 10 yr fight . Now you have the heart problem.
I myself had heart problems - heart attacks - pericarditis - last 2 HA ended up in Oxford getting 3 stents put in. On return to local hospital they told me something seen on lungs. Turned out cancer both sides. Had to wait 7 months before anything was done due to 2 different consultants not interacting with each other. Eventually had VATS procedure on one lung. Other side is slow growing so I can honestly say not bothered about it.
What I think is your heart is the body's engine - without it body won't work. So far have had no other problems with heart - still taking all the tablets given after stents ,- was told just keep taking them!
Due to lung I have developed copd which taking 2 lots of inhalers. Great help.
Due to initial heart problems - after VATS procedure I saw oncologist for first time who said put me on 6 months chemo - no info given about side effects - what danger to heart - have to admit I was bit peeved and declined his offer. That was first and last time seen him
I get on with my life. Even planned my garden and ordered plants for this spring.
Do hope you ask questions and it's up to you what path you take. It's your body - your life - enjoy while you can
Thanks for your reply Flissy. Yes, I'm ordering plants and planning bits and pieces too. I'm sorry to hear about the cancer diagnosis , and it doesn't sound that it was handled too well by the different teams. And yes, cherishing and enjoying life is so important - thank you for the reminder.
So sorry you're having to deal with so many issues.
I agree with the sentiment of the good people who have already posted here.
All I wanted to add is from my recent personal experience.
I have 3 stents. Following the procedure, all was fine, absolutely no issues. At that time I lived abroad and there was no cardiac rehab. After a few days at home, I started to feel exactly as I did before the stents; palpitations, dizziness, trouble breathing and basically feeling like I was going to die - I couldn't believe it.
It was only relieved by sitting down for 10/15 mins.
I immediately went back to see my consultant, who put me on GTN spray and said maybe I had another blocked artery !! Unbelievable, I'd had the angioplasty just 3 days prior. Long story short, the GTN didn't work, and my consultant wouldn't believe that the spray didn't help me at all. At this point I decided to return to the UK.
Fast forward, a new specialist Cardiologist arranged for me to have Cardio Purfusion MRI. The outcome was that my stents were working "beautifully" (his words). He also said that he wasn't surprised to hear that the GTN was not relieving my symptoms, because the MRI revealed that I had a completely separate heart condition, namely Hypertrophic Cardiomyopathy (with obstruction). AKA Sudden Death Syndrome. It's a progressive genetic condition that I had no prior knowledge of.
So my point is, if the GTN spray is not helping your symptoms, press ahead and insist on further investigations.
I'm certainly not suggesting that you may have any conditions such as mine, but if you feel that something is not "right" please get it looked into.
Had I not, I know that I wouldn't be on any of the life saving/prolonging life medications that I am fortunately on today.
I wish you all the very best and hope you get this particular issue sorted out.
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