Hi all I am new to the Lung site. I am feeling pretty frustrated and very down. And could do with some help and suggestions. I will try to keep this as short as possible but it’s all a bit complicated.
About 9years ago I was diagnosed with LBB, Total Heart block and dilated Cardiomyopathy . This resulted in having a Pacemaker fitted. My pulse had gone down to 25bpm pretty low. The op went well but I now I also have AF. Apart from that my life ticked alongfairly normally.
For the last 4 years I have had a chest infection in Nov/Dec each one of these episodsbened with me being admitted to hospital for a few days. Last year I had another chest infection and I spent 2 weeks in hospital. I was discharged a week before Christmas. Still not feeling brilliant but as it was busy at work and home I persevered. 2 weeks into Jan I was admitted to hospital feeling really rough. They didn’t seem to know what was wrong with me. I was tested for all sorts flu, croup , whooping cough. Theuy eventually decided it was pneumonia . I was in for 3 weeks. When I was discharged they said it would be a few months before feeling completely better. I have not got completely better and not able to do very much without becoming completely breatless, i can only walk about 50 yards and can’t do household chores. I have bought an electric scooter but as I can’t get it in and out of the car I am virtually housebound.
I also suffer with severe chest pains where the symptoms are very similar to heart attack so keep being rushed to A and E. I have just had another bout of problems breathing and have had some chest pains was admitted to hospital for 3 days. Whilst in hospital my pulse rate on rest was a bit high 110to 120bpm a week later and it’s still pretty high on rest. The Cardiology has said it’s not cardiac related. My chest X-ray was clear. I am waiting to have a ct scan of my lungs . I have been tested for COPD by my doctor as they were convinced I had COPD but the test cam back as negative I don’t have COPD.
I don’t know which way to turn and I am so fed up with going to hospital that I now have my own set of monitoring blood pressure ,thermometer and oxipulse meter. Has anyone else come across this issue.
TIA
Written by
Sherrill
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So sorry Sherrill, the old heart is rebelling nowadays against the amount of medicines and side effects..I am supposed to have some scans..
Still I know what you mean about the medical daily routine and attending tests and doctors and hospitals appointments. That wears me out although I am deeply grateful it is keeping me alive..so what choice do we have but to plod on..
Just want to welcome you Sherrill and hope things do improve for you very soon.
You can enquire about a hoist to get the scooter in and out of your car or maybe a friend can go out with you.
Hope you get more replies soon. Xxxxx
Hello Sherril. I’m sorry that you have been having such a rough time. The problem with the type of treatment that you have been getting is that it is always reactive to a crisis. When you are taken into hospital they are trying to find the immediate cause of your problems - a virus, pneumonia etc but there is no chance to explore what may be an underlying condition which makes you vulnerable to these opportunistic illnesses.
I have AF and dilated cardiomyopathy which is controlled with drugs and I also have lifelong bronchiectasis.
Your cardiac people say that your problems are not to do with your heart. By the way, if they were giving you nebulised ventolin in hospital this can send your heart rate up.
I would suggest that you go back to basics and get your GP to refer you to a respiratory consultant. Preferably one who also specialises in bronchiectasis. Tests in doctors’ offices are not sufficient to diagnose any lung condition properly and when you get a diagnosis the consultant should tell the GP how to proceed with ongoing care.
Waiting until you are admitted to hospital again will not take you any further forward as yet again they will be dealing with the immediate crisis.
Also, the ct scan needs an expert to read it. GPs do their best but they are general doctors and not specialists in any field. It is also my expperience that the people designated in hospitals to read ct scans have failed to recognise my bronchiectasis. Only my bronch specialist can do that. I am not suggesting that you may have bronch but that you need an expert in the respiratory field to diagnose why you keep getting these problems.
I’m afraid that we have to be our own advocates in caring for our health.
Thank you for your reply I am on a waiting list to see respiratory and the CT scan, theses are both going to be done at my local hospital.
I was only given the nebs for one day to help with the breathing. It’s now 5days later and my heart rate is still up. It seems to be going down a bit but it is going down very slowly. If I take my blood pressure when I stand up the blood pressure goes down and the pulse rate goes up.
Hopefully the CT scan will shed light on what is going on.
One of the DRs at the hospital seemed to think as I have started to have counselling this is all in my mind and there was nothing wrong next day they discovered I had a chest infection. This comment has really upset me and I feel like I will only call an ambulance out if I am really really seriously ill. Unfortunately due to the pacemaker the ambulance crew will take me to hospital 99.9% of the time. So it’s going to take a lot for me to call an ambulance. That’s why I have bought the monitoring equipment. I hope it will give me enough information so that I won’t need to phone them.
I really find it hard to take that there are still idiot doctors out there who try to blame our obvious physical conditions on fragile mental health. In 1976 I had just come home as a refugee from the Labanese civil war, given birth and had one heck of an exacerbation. I went to a local GP who told me that I wasthinking too much about myself. My Mother had to take me to the family doctor from my childhood who swore about the stupidity of the other doc and gave me my antibiotics. Ignorecomments like that or fight back by telling them that they obviously can’t see what is in front of their eyes. I do hope that the specialist gets to the bottom of it all, that you can get the right treatment and start to feel better
Littlepom is right, you need to be tested properly by a respiratory consultant. My GP's Spirometry test results showed that my lungs were in great shape 130% as compared to others of my age etc. The Spirometry performed at the hospital included additional tests which showed my gas transfer levels at 64% of expected. They dont test gas transfer in GP surgeries so ask for a referral. Good luck.
Have you had a blood test to check for possible blood clots? My mum has been in and out of hospital, was diagnosed with pneumonia about 6 weeks ago, sent home - still felt awful - couldn't breathe. I took her blood pressure on Sunday and it was sky high! I called the paramedics and this time the hospital went a bit further than saying it was another copd exceberation, as her lungs were clear. The blood test (D-Dimer) suggests that she has a very large clot floating around somewhere. The additional breathing problems have been going on since at least February and I strongly suspected that it was more than her lungs giving her problems.
Mum is still in hospital, waiting for a ct scan to be done, so I can't give you a definite outcome, but a simple blood test could put your mind at ease.
Hi welcome to the site. Sorry to hear that you have a few problems with heart & lung.
You don't have to be housebound, I had to get a 2nd hand disabled vehicle with a ramp already factory fitted with a slightly sloping floor. It gets me from A to B and then out comes the scooter, bit of a pain but it doesn't put too much strain on you. Rattles a bit but put a couple of old pillows around it to deaden the rattle. it gets me out of the house and into the fresh air.
I too have spent a deal of time in/out hospital but many of us on this site have the same type of visits to hospital especially in the winter months when our lungs don't want to work properly. It can be a bit scary but you learn to live with it.
Don't beat yourself up as much as you seem to, except the situation, work around it as best you can, change the car, get a blue badge and hit the open road when the weather is good.
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