It is a follow up after having pulmonary embolisms in December. The pulmonary function test I had just before I was admitted to the intensive care was 56% lung capacity. I am kind of nervous. Having a lot of trouble breathing lately, even while just getting dressed these days. I have no idea what it is, asthma (because of Spring allergies) or the blood clots. I guess I will find out! Appointment right after with the pulmonologist. I have a fear of doctors, I don’t know why. I work in a hospital and have no trouble while working, but when it comes to me and my problems...I feel I am wasting their time and feel bad for being there. I hope I don’t do what I usually do (because of the anxiety), and finally see the pulmonologist and say when he asks how I am: “oh I am fine!”. I hate it when I do that. It is like I just want to get out of there as quickly as I can.
Pulmonary function test tomorrow... - Asthma UK communi...
Asthma UK community forum
It may be prudent to write down your day to day symptoms and what you struggle with. It's important to convey to the doctor the facts so that they can treat your condition. If you've got an easy to read, bullet point list, then you can use it to frame your conversation and answer questions concisely. Don't leave anything out.If you leave saying "I'm fine" then that unfortunate doctor may feel they've let you down. They're not mind readers and the better a patient is at sharing facts, the better the doctor can be at their job. It's like a partnership.
I hope your appointment goes well and you get the ongoing treatment that you need.
I did exactly what you said and am proud I left the office this time satisfied I asked all the questions and didn’t forget a thing! But I got nowhere. Told him about the dizzy spells and falling down. He said that was not normal. And that is all. Said I am still showing severe asthma symptoms after the lung function tests and to keep using the puffers I am using. But he told me not to worry as it was “just asthma”. (Don’t know if he meant my symptoms are asthma related and not the large embolisms in my lungs??) Anyway he was not too worried about anything. Going for another CT scan of my lungs to see how the clots are doing. Told him about the difficulty I have even walking to my car at work or getting dressed (so short of breath), and he said yes, it is both the embolisms and asthma. And that was that. Told me he really thought I was not going to live when he saw me in the hospital. But here I am...so lucky. So it was an ok appointment...but still unsure what the falling down/dizzy spells are and what to do. Not sure what to do when I lose my breath at work (really scary to not be able to pull enough air or to exhale it in time for the next breath). But oh well. He isn’t worried so maybe I shouldn’t be?
Well done for getting through it - these appointments are never easy!
Dizziness isn't normal in asthma itself but it is very common in breathing pattern disorders which itself is very common alongside asthma and other respiratory issues - issues you are obviously experienced in! Breathing pattern disorders also cause shortness of breath which the makes it difficult to differentiate between episodes of that and asthma, when you have both.
Breathing techniques are extremely effective with symptoms caused by BPD as they occur (such as shortness of breath and dizziness, which is usually caused by breathing too quickly) - and also used regularly over time can can help to reduce the episodes caused by breathing pattern disorders. (The symptoms won't be helped by inhalers when caused by BPD but would be if caused by asthma.) Of course you'd still be left with asthma related symptoms but being able to knock some of it on the head would probably be helpful.
Different people find different excercises suit them but this site explains different types:
I think what I need to do better is use my rescue when I need it. I carry it with me, but really, I don’t use it most times and my symptoms get out of control. I should try to use it when I start to feel bad as an experiment and see how well it works for me.
Erm yes please do that! 😅If it doesn't work try some controlled breathing exercises because any breathing pattern issues won't be improved by inhalers - though of course asthma symptoms will be. So at least if you've got both strategies to hand something should help.
But yes agree re dealing with things before they get worse - I've often heard physios etc tell older people in hospital to keep on top of pain relief rather than wait til it's really bad as then it's harder to control - I think that works for us too with asthma relievers.
I was told that too in the hospital. If I have joint pain, don’t wait until it is unbearable before taking pain medication - the hitch is what I have always done. Now I take it spread out throughout the day every day and what a difference!! I should use the same for asthma. I always have the idea that if I wait long enough, it will get better.
Well done you! Be proud. But disappointing that your questions weren't answered to your satisfaction. Have you considered talking with the British Lung Foundation about your expectations and current symptoms? Personally, I would expect a recovery and rehabilitation plan from my consultant together with ongoing monitoring. I know it's hard to ask for things for oneself, but the BLF could help you understand what your consultant should be doing to support your ongoing recovery, especially as you have asthma.
I also found this and hope it proves helpful. bloodclotrecovery.net/what-...
Keep your chin up Willow - we're all rooting for you.
Wow! That article, she could be talking about me. Except they never gave me oxygen. Even in the ICU when my level dropped below 90. 🤷♀️ And this fatigue. It is nothing like I have ever experienced. I am four months out from the embolisms that nearly killed me and I have been back working my full time job for five weeks now. Somedays I just fee I can’t. But I show up anyway. I took today off to go to my appointments and the thought of going in tomorrow...hurts me. In my mind I wonder why? I should be over it by now.
I personally don't know much about PEs but I would imagine everyone takes their own time recovering. Having read a little, it can take quite a while but there should be a rehabilitation plan for you, so you can safely build back your strength. A family member (distant) had a similar experience last March and was in ICU for weeks and in hospital much longer. They continue with their rehabilitation but it's a long road. They are now at a stage where they have weekly gym visits for a programme designed for their PE recovery. Not in the UK though so not sure what the NHS does, but the British Lung Foundation should be able to explain what's available. I'm amazed you're back at work- hope it was a phased return and that occupational health have carried out a review in light of your ongoing health challenges caused by the PE.
I was off work nearly 8 months with other health problems (very ill followed by a huge op) and had a very slow phased return to work and was part time for another two months. Even then I ended up back in hospital as an emergency as I had done too much. I had an occupational review and reasonable adjustments recommended as a result (part time and finish early whenever necessary). I really needed that time as I was running on empty.
If you're in a union have a word with them about getting an occupational health review etc. It's important to get help to support you at work.
I was I. The hospital for four weeks, ICU for two of them, and when I was discharged all I was told is if I feel off in any way, go to the emergency. That was it. I went home, took one week off, and started full time Monday to Friday 7am to 3pm. I am on empty. During the week, I go to specialist appointments on my lunch break. Vascular surgeon, hematologist, pulmonologist, gynaecologist, rheumatologist...then every Monday morning and Friday morning, I go to work an hour early so I can be first in line for blood tests (for the levels of Warfarin (blood thinner) to make sure I am in a safe range. Those days, Monday and Friday, I have to watch the time and at 2pm, call my family doctor for the level and instructions to either up the dosage or lower it. But they never answer the phone at 2pm. I have to keep calling until I get them...all the while working at my job. This routine since January 11th. I am exhausted. By 3pm when I am done, our staff Peking g is just across the street from the hospital I work at. The last two days, I seriously thought I wasn’t going to make it to my car. I am so out of breath. I found out today at my pulmonary function that I lost 1.07 stone (15 pounds) since I was discharged from the hospital. I am sure it is because I am using so much energy just to breathe these days.
Unfortunately some employers have to be asked to fulfil their duty of care to their employees. If you're in the UK there are legal protections and you would still be entitled to an occupational health review in order to establish the reasonable adjustments necessary due to your health. HR should be on it, but they need to know you need a review. The review is carried out by a qualified OH practitioner. You definitely need practical support and I would start with the BLF and HR.
That sounds like a great start. I live in Canada, but there should be something like that here. I will look into it. I work at a hospital, so there should be something for staff....
I'm no help I'm afraid on how things work in Canada, but there should be an equivalent group to the charity British Lung Foundation who can explain your rights in terms of treatment, recovery, rehabilitation and employment.
Sounds like you need a bit more time off work? You sounds exhausted and who wouldn’t be after all that has happened plus the overarching Covid stuff going on all around us. GPs can prescribe graduated return after time off sick and other ways of working that might help.
I second Poobah with the writing it all down as a checklist; I’m always banging on about it on here!
How about you write it down as you have here and give it to him or post or email before your appointment? White coat syndrome is a well known reaction to seeing a medical professional as is minimising your symptoms and how you are feeling. The doctor will be thankful that you told him even if you didn’t do so verbally.
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