I have now been struggling since January when I had pneumonia. My peak flow has gone from 450 to 250. I must add I also have heart block. Dilated Cardiomyopathy, and AF as well as severe pain due to 2 damaged discs in my spine.
I have been rushed to hospital 4 or 5 times since January either with severe chest pain or breathing problems. Because I have both Heart and Lung problems I feel I am being bounced around the system but not getting a diagnosis. I have had to give up wor and can’t go out unless I have an electric Scooter. I am unable to do much around the house without being out of breath, I don’t sleep well at all.
Before the pneumonia I had worked full time and 2 years ago ent on holiday to the Far East and walked for miles. It has become very difficult to come to terms with the changes especially as I have no diagnosis. I have been tested for COPD but have been told it’s not that. No one seems to know and I get the impression they think there is nothing wrong with me. One doctor blamed my depression for it. He didn’t seem to get that I am depressed because of my health not the depression causing the illness. Last time that I was admitted to hospital the consultant suggested a scan of my lungs. I can’t have an MRI as I have a Pacemaker. That was several months ago and I am still waiting. I now have an appointment with the respiratory team. I am so scared that they are not going to help me and leave me in Limbo yet again.
It is so hard on me and also my family. I don’t know how I am going to cope if they don’t come up with something. If I know what is wrong I can deal with it, it’s the not knowing that is the worst.
I am so hoping they are helpful but don’t believe they will be. Don’t know what to do if it’s not helpful as I dont think there is anywhere else to go. I think it’s a mixture of my heart and my lungs but the doctors only look at there speciality they don’t get together to look at the issue. It’s bad enough being virtually housebound but not knowing why is ????
Sorry for the rant but is difficult to speak to family.
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Sherrill
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Dear Sherrill, my heart goes out to you as clearly there is something wrong and you need definitive answers. No wonder you’re feeling depressed and it must all be so very stressful.
My husband Pete has had 2 heart attacks, has sarcoidosis, COPD and herniated discs for which he has a spinal chord stimulator fitted that doesn’t help one bit. He also has to use a scooter but at least he knows what’s wrong with him.
You need a cardio and lung specialist so when you see the respiratory team please do tell them exactly what’s been going on and how you feel.
I do wish you well and let us know how things go, we’re here for you so have a rant as and when you feel like it. Xxxxx
Thank you for letting me rant. I have been under Cardio for dpseveral years now. They don’t think my problems are caused by my heart. I am now under the Cardio heart failure nurse. She reduced my Bisopralol and told me to ring her after a few days of monitoring my blood pressure (I have my own machine), this I did and noticed I had several high blood pressure readings. I phoned and left a message for her at least 4 times left my name phone number and hospital number. I was never phoned back, I was also told that she would see me as soon as I had my COPD test results. She was told by another consultant several weeks ago that I hah already had the test several weeks before by my GP practise. I have stilll had no appointment. More frustration. I am beginning to think I will have to wait for another emergency admisssion before anything is done.
That’s not good treatment Sherrill but I would continue to ring and ring until you get a response. I’m a bit like a dog with a bone if people don’t respond when they say they will.
I feel your frustration but please don’t give up. Best wishes to you. Xxxxx
I do sympathise with you, but don’t know what to suggest as I have the same problem. I have congenital heart disease corrected 1961, but I still have a bicuspid aortic valve, and now a developing aneurysm and enlarged right heart. I managed to get a referral to the adult congenital heart disease clinic in Bristol and have also now been dxd with pulmonary hypertension. In addition I have bronchiectasis and probably obliterative bronchiolitis. I use ambulatory oxygen at 4 l/m. The cardiologist says my breathlessness is my lungs, my respiratory physician says my heart. Neither of them will commit themselves nor give plain speaking answers! I am seeing them both again soonish, so hope to find out more. I like to be told things even if not good. All the best xx
What an awful situation you find yourself in. I am very sorry for your predicament. Your description of being in limbo is indeed very apt and understandable.
Is this the first consultation you are going to have with the respiratory team? Have you had a lung function test in the past? And if so, what were the results like?
It really doesn't make sense to me that the various departments in hospitals don't collaborate. Somebody really needs to put two and two together in my humble opinion.
I am hoping the respiratory consultant will order the necessary tests to see where your lung function is at. And that you will get the help you so deserve now.
Please do let us know how things go, if you are so inclined.
I have been tested for COPD but apparently I don’t have it. I was tested at the GP I think that it should be checked by the hospital. It is my first appointment with respiratory. Not sure if is the referral I was supposed to have when I was discharged after 3 weeks in hospital with pneumonia. They said it would be about 3 months after which was May !! Or if it is the referral for a ct scan that was requested by the consultant on one of my emergency admissions round about June. Not had an appointment for CT scan. I have a feeling they will fob me off saying It is not neccasary.
Hi Sherrill, no wonder you felt the need to rant, I would too after being treated so poorly. The hospitals just dont seem to work together and I do think that we have to stand our ground to get things done. You really must have a ct scan so that both you and the consultant knows what they are dealing with, as you say you can then deal with it. It must be awful for you not being able to get out and about much. And maybe the respiratory physio team could help with you being out of breath, ask about this when you go. Make a list of questions to take with you and get names so you know who you are dealing with. I looked up the various doctors on the internet to see if they were the best for me to see and if not you can request to be referred through your gp. One thing I have learned is that you have to stand up for yourself. Good luckand keep us updated. Irene x
Hi Sherrill make it count at your respiratory appointment they usually have a physio nurse you can talk to in the department .ask questions don't be fobbed off. I had a meeting with respritory when I was diagnosed with kidney disease and both copd bronchiectasis and asthma were all linked to each other but 2 separate consultants do their own thing .good luck
Hi so sorry that you feel low as a result of your ailments. Whilst the hospital may not be giving you answers to your problems you really must not beat yourself up about it. Your depression appears to stem from not having a proper diagnosis of your condition.
I can fully understand your frustration, many of us on this forum have had the same problem, many of us cannot do things we used to do everything has to be at a slower pace. I worked for full time working around the country as a surveyor/designer. To stop that was devastating but fact of life I had to accept the situation much against my principles, acceptance that there are things you can no longer do is commonplace,unfortunately you have to get used to it or go out of your mind. I still get very cross that I cannot do/go things I used to but my ailment will not allow such an indulgence.
It is hard for the family I know from bitter experience, my partner gets extremely irritable with me getting mad at myself and often forgets how difficult it is to get around. I've bought an electric scooter, like you and now have a car with a ramp that I can take almost anywhere, all of which helps to keep in touch with others.
I know I wont get any better so I have enjoy what I can do.
You appear to have difficulty speaking to family members, try the BLF nurses or support staff, there are people out there worse than you, always remember that. The staff will help to support you.
Try the local palliative team they know things and people that can help they can get you in touch for disabled aids and other depts that will help you. It doesn't solve the problem but it does help you to understand.
Try it, if you don't ask you'll never know. I have been through the lot but unfortunately I have a cancer that prevents any form of treatment.
You could research lung transplants, lung reductions, lung coils, lung valves and even stem cell treatments, there are a lot of things out there for you to find. However do not use the web, it usually provides worst scenarios and frightens you witless.
Hi Sherrill, I totally understand how you feel. In 2010 I began the same journey you are now travelling. I was terrified and no-one seemed to be able to help. My GP was great but in the end all he could do was keep sending me back to hospital. So I asked to see the local respiratory consultant privately, I had lost 4 stone in weight and was suffering pnuemonia every 6 weeks or so, I had had a CT scan but nothing showed up. Anyway when I saw the consultant he immediately put me back on his list and sent me for another CT scan as he felt something had been missed. At last, a diagnosis, I had bronchiectasis. I had never heard of this complaint but I was so relieved to have a diagnosis. The consultant could also help with medication. I have been taking Azithromycin 3 days per week ever since and have not had pneumonia since. I do like everyone else get infections but not very often. Paying privately is not ideal but for me it worked, I have my life back. Good luck and take care, let us know how you get on. I do understand the frustration and anxiety are the worst so be proactive and try to find someone who will help. Maximonkey
like you a year ago worked full time ,travelled to Australia,only thing I had was a cough for years ,under hos but told it wad reflux ,then in december ended up I respritory failure ,daid I had pneumonia , whilst in told was told i had a form of fibrosis. Then diagnosedwith hypersensitivity pnuemotitious. Caused by environment , now on immune suppressant tanlets and steroids, and have to use oxygen when moving , yes my condition makes me feel depressed as well 😌
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Can you still have lung problems with a normal pulmonary function test?
Regular seasonal flare-ups
Lymphocytes still low
Getting up at night to go to the toilet
Things are looking up…pulmonary rehabilitation course
