Going down hill or not: Need to vent... - British Heart Fou...

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Going down hill or not

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34 Replies

Need to vent really, haven't felt right for quite some time. I try to keep myself fit and healthy but recently really struggling, getting short of breath and lots of leg pains with swelling, resulting in parkrun times getting slower etc. I've been in A&E a few times and they always tell me there is some fluid on my lungs and that it looks like I'm starting with the early indicators of heart failure. Cardio have been dismissive as ECG and treadmill, despite the time on the treadmill being 25% less than 6 months ago,have shown no significant changes so they don't seem interested at all. I've had numerous stents and quad bypass, cardiac arrest and a few MI's. I've had this in the past where they basically convinced me it was all in my mind but then ended up having interventions. Really feel like I'm banging my head against a brick wall.

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34 Replies
Keep-it-ticking profile image
Keep-it-ticking

Thanks, just frustrated at the moment. I consider myself fortunate in a lot of respects as I can do the things I can. Don't feel guilty about moaning, everyone's experience is unique. Like the name by the way, ex forces ?

Zena166 profile image
Zena166

Hi keep it ticking. I think if you feel it isn’t right you should go with your instinct. Keep returning and persisting. It maybe that you could ask for a second opinion. It’s important that comparisons are made against your norm as opposed to The norm. You clearly have noticed some substantial differences for you (25% is a great deal). Given your history I would hope they would listen to you so be persistent. Return to your GP and discuss with them your options. Often us ‘not feeling right’ is a good indicator that something needs reviewing. Take care and keep us posted. Best wishes. Zena

Keep-it-ticking profile image
Keep-it-ticking in reply toZena166

Thanks, I've got some appointments coming up so I'll have to push harder to get them to listen.

Vivi2711 profile image
Vivi2711

Talk to your interventional cardiologist. It seems heart failure is creeping in since shortness of breadth, swelling of ankles/feet, abdomen, excessive fatigue waking up during sleep, feeling short of breadth while lying down flat or bending yourself are the classical symptoms of heart failure. Some may have palpitations / racing heart beat. If one or many symptoms as listed above are present stop exerting yourself forthwith. No more exercises till evaluation & advice front the specialist. Echocardiograph will speak the facts. Cut down the salt intake and start taking less fluid as likely to be suggested by your doctor. Guard your energy. You are likely to be administered with diuretics (water pills) to get rid of the fluids. If it is starting stage of heart failure absolutely there is nothing to worry since advanced medications coupled with life style modifications will reverse the disease completely. Go ahead. Reach out for your doctor forthwith & all the very best.

zxcvvb profile image
zxcvvb

Hello Keep-it-ticking. I'm really interested that you have been through so much but are managing to do the Parkrun in the cold weather. What times do you do? Do you monitor your heart-rate during the runs?

Keep-it-ticking profile image
Keep-it-ticking in reply tozxcvvb

Hi, I managed to get under 27 mins last year and just over an hour for a 10k. It's been a long slog to get this far and in honestly has taken a few years due to setbacks and other non cardio issues, hernia's etc. Down to 32 mins now on Parkruns and struggling all the way round. In the cold weather I wear a buff and pull it up over my mouth and nose to try and keep some warm air coming in.

DebbiB28 profile image
DebbiB28

It took me several referrals and about 12 years before I was able to convince the hospital that something was wrong! Problem was eventually found by a new cardiologist who obviously listened! Keep at it and listen to your gut instinct. We're usually right! Good luck.

Keep-it-ticking profile image
Keep-it-ticking in reply toDebbiB28

Thanks, I know I'm going to have to be more persistent.

Prada47 profile image
Prada47

" If it is starting stage of heart failure absolutely there is nothing to worry since advanced medications coupled with life style modifications will reverse the disease completely ".

Just a small point Heart Failure is Progressive it can be managed but not cured (currently) I do think after the test you have had they will know if you have Heart Failure. A Simple blood test will give a good indication, and indicate if more tests are required.

Lezzers profile image
Lezzers in reply toPrada47

My husbands nurse has told us that a very small number of people are able to have their HF reversed depending on what caused it, I believe it's if it was caused by a virus. For the vast majority of people it is progressive but with correct medication & care, life style etc most people can expect a near normal life span.

Prada47 profile image
Prada47

Agree Lezzers

EF can be improved, but that is caused by the strength of the Heart Muscle Improving reacting to Medication. I have offered my Heart for research when I die and was told by a very Senior Cardiologist that they would be able to see so much because my Heart Failure is/was probably caused by an MI in 1982. I will get the letter out that shows exactly how much Heart Muscle is dead and that can't be resurrected, no matter the treatment.

I am not trying to pick a fight just exchanging information !!

regards

Lezzers profile image
Lezzers in reply toPrada47

I completely agree with you, my husbands heart failure was also caused by a massive heart attack in 1997 & will never be cured because of the damage. I have also asked him to leave his body to medical science as I truly believe that he would be a good case study. I don't know why you think I'm picking a fight & I'm really sorry if you think that was the case, if you read any of my previous posts you will see that I am completely against acrimonious posts on this site.

Keep-it-ticking profile image
Keep-it-ticking in reply toPrada47

I've told my wife to leave my body to science in the hope something can be learned from it. I only really think my body is a vessel and when I pass away my spirit, essence or what ever you call it , will be released.

Lezzers profile image
Lezzers in reply toKeep-it-ticking

It would help science so much if more people considered this

Keep-it-ticking profile image
Keep-it-ticking

I'm ex forces too, the health problems cut my career short.

OttoK profile image
OttoK

I am not an expert but ECG is electrical. My dodgy valve (mechanical) only showed up on the echo (ultra sound), and echo stress (echo-plus-bicycle). I know that endema, aka puffy legs (probably worse at ankles) means not enough oxygen and that could mean valve issues. All the usual: legs up on the sofa to take pressure off etc etc. I have a breathing trick to get that oxygen in: breath in (count 6), hold (count six), out (count six). Good if you feel dizzy.

Also watch out for LOW BP (Boots has a nice little machine).

Note I am not even close to being a doctor, only a **** patient, so pinch of salt please (proverbially speaking that is).

All the best,

Otto

Prada47 profile image
Prada47

Hi Lezzers

I wasn't referring to you about picking a fight it was for me ( I know what I mean ) lol

I only try to offer my own life experience when posting and what I have picked up along the way, from people who have an awful lot more knowledge than me.

regards

Lezzers profile image
Lezzers in reply toPrada47

Thanks for your reply, I would hate people to think I was difficult, having banged on so much about respecting other points of view!! It just goes to show how easy it is to misinterprete how things are posted. Take care x

Prada47 profile image
Prada47

" Thanks for your reply, I would hate people to think I was difficult "

I will leave that to your husband to decide LOL

Lezzers profile image
Lezzers in reply toPrada47

I would never dare ask his opinion about it!!

Handel profile image
Handel

Good luck mate. Keep on at them!!! xx

Keep-it-ticking profile image
Keep-it-ticking in reply toHandel

Thank you.

Dickydon profile image
Dickydon

What might help convince these often don’t care attitude doctors and there are a lot of them around also good ones too, is to write down times, dates and what you are doing and feeling at the time of entering the information and after a couple of weeks take that data you’ve compiled along with you to your GP then they should take more notice; it’s worked with me.

Good luck

Lezzers profile image
Lezzers in reply toDickydon

Very good idea

Keep-it-ticking profile image
Keep-it-ticking

Fortunately I was very fit prior to getting diagnosed and they had told me that if I'd been in a sit down inactive role the outcome in all likelihood would have been different. I just work on theory the hearts a muscle so I need to try and keep exercising it.

Ianc2 profile image
Ianc2

I suggest you dial back your exercise to brisk walking on a daily basis for an hour or so, get a fitbit or similar and keep a diary of your reading. I assume your weight is where it should be, waist half your height, etc. if you have a history of your arteries clogging up you may wish to overhaul you diet and knock out any food containing sugar in particular, along with junk food.

From experience the medics seem to leave you until you are at deaths door, then start to employ larger and larger doses of pills until they finally decide it is not working and go for a valve repair or an ablation. Take a partner along on your appointments (with a page a day diary) and write down what they tell you. You may find that the information they sling at you a bit too much to digest in one go.

if you can produce evidence of lessening performance, write it up and take it with you and have a list of questions ready. If they come up with very long waiting times you may care to remind them that you are a veteran and as such have to be given priority treatment. Never tried it myself, but It may be useful if required?

Keep-it-ticking profile image
Keep-it-ticking in reply toIanc2

Thanks for the reply,I have now started to log events/incidents etc. Diet is very healthy and eat mainly low fat, home cooked and prepared meals, cholesterol has never really been that high but arteries just kept blocking. Find it difficult to cut back on exercise as it does effect my mood if don't release the endorphin's and I want to do things while I still can, if that makes sense.

Ianc2 profile image
Ianc2 in reply toKeep-it-ticking

Trying to find out why arteries keep on clogging seems to be a bit of a mystery. Personally I think it is a lot to do with hidden sugar in practically every thing, but it is an interesting question to ask. The only diet I have seen that stops clogging is the 800 calorie a day diet aimed at stopping diabetes type 2. This diet does work but needs medical supervision.

Keep-it-ticking profile image
Keep-it-ticking

Unfortunately the veteran priority only relates to the injuries I received in service. I do keep trying to get them to listen but they really are dismissive, constantly trying to push beta blockers which I’ve refused as my hr is low enough so would end up asleep all the, didn’t respond well to them last time.

Salihyuksel67 profile image
Salihyuksel67

Do you have bad cough?

Keep-it-ticking profile image
Keep-it-ticking in reply toSalihyuksel67

I wouldn’t call it bad but I have started getting an irritating cough and do have to clear my throat and nostrils a lot when carrying out exercise. Been like that for quite a while

Salihyuksel67 profile image
Salihyuksel67

I feel exactly same symptoms but I have very bad cough started I am going to gp this Friday. I had bypass operation last April. I hope you will get better, but check your cough. Good luck.

Keep-it-ticking profile image
Keep-it-ticking in reply toSalihyuksel67

Hope all goes well for you on Friday

Salihyuksel67 profile image
Salihyuksel67 in reply toKeep-it-ticking

Thank you

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