Thank you so much everyone for sharing your experiences. I spent hours yesterday going through all the information on this website. What a lot of information! I have to admit that I am even more scared now than I was with the limited knowledge I had previously! However, I would do anything to ease my breathing and have a better quality of life. I don't seem to be in as bad health as a lot of you were before the op. I don't use oxygen, only Trimbow and Salamol inhalers; and if I have an exacerbation I have a rescue pack in hand (Doxycycline and Prednisolone) and a nebulizer. Part of me wants to say that maybe I should wait a bit, but I know that's just making excuses because I'm really scared, the other part rationalises, that maybe I will get over the op quicker.
I do feel much better prepared now though and for that I am truly grateful. I live on my own, so it sounds as though I will need to get some care in place for my return home from hospital. I have been warned by the doctor at my local hospital that the cogs turn slowly, first is to get a CT scan. Watch this space! Thank you again.
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Yes, lots of historical information on older posts and their replies. I often fall, down a rabbit hole when looking across at 'Related Posts '! I'm a great procrastinater .
I think it's fair to say that if you're ripe for the op there'd be a lengthy waiting time and it wouldn't happen quickly. Unless you go private of course. If I were you I'd start sooner rather than later so everything is in your medical record. P
Thanks. Yes I've started the ball rolling. The doctor has put in for a CT scan and said I could change my mind later if I want to, but going on the advice I've had on this forum, I will almost certainly go ahead if it's offered.
When you are ready for discharge the hospital team should arrange personal care (if required) for 6 weeks. If nothing is said to you, you should raise it.
That's an interesting expression from the hospital doctor, that "the cogs turn slowly" yet in the greater scheme of things is very true. What is good about this expression is that it reminds us that there is no overnight miracle, yet on each calibrated turn of a single cog, then another cog turns a fraction, and all this is multiplied ten times till a bigger cog may trigger a major event or change in one's body. I shall remember that expression the next time I'm ill!👍
I feel the same as you although it’s be not been offered yet!!! It was on the CT report with a question mark so I suppose I might be eligible and yes if we live alone how do we manage
I thought it was salumol which I didn’t get on with at all. So asked & got from my GP a return to Ventolin as salumol didn’t work at all. But now I find salbutamol ( Ventolin ) doesn’t work now. I have COPD & Bronchiectasis which with no relief from Ventolin is making life difficult for me. Hope salumol works for you as we are all different. I have now been referred to a consultant at local hospital prior to which I am having a respiratory test. If salumol works for you then stick with it. Best of luck for the future.
Hi Normc. Salamol and Ventolin are both reliever inhalers, which are for short term relief, but your GP can prescribe you a longer acting inhaler, up to about 12hrs I believe, as well as the Salamol or Ventolin.. I have both Salamol and Trimbow. Best luck
It's natural to be scared. But if it can improve your quality of life then I would suggest it's worth it. I had a lung transplant. Initially I was scared, but the scared slowly turned into determination and the pursuit of living a little longer plus the ability to breathe again. I wish you the very best!! 🌿🌼
There is no need to be scared, l would love to be able to have LVR, but my first appointment to be seen at Brompton Hospital is not until April 2025. My recent chest xray showed that l had "mild reticular change representing interstitial fibrosis seen especially in the lower zone." My breathing is very bad right now, l get out of breath just combing my hair in the morning.
I have my yearly Chest Clinic appointment in January 2025, my GP requested an earlier one and that came back to Dec 2nd. So the waiting times are causing a lot of stress, considering that you will not get any treatment for the existing fibrosis that turned up in the latest xray. This causes additional stress as there is treatment available to slow down the progression of fibrosis. I do not even know what the cost would be to go private to be tested if l would be a candidate for LVR
I do not even know if L VR can be done if someone has a form of fibrosis. So here we sit getting more breathless each day waiting and praying for some form of a miracle.
You sound in a worst condition than me lovejoyliz, I do feel for you. I know nothing of fibrosis but it must be so very frustrating knowing that there is treatment available to slow it down and you can't access it. I don't know yet whether I'm definitely going to be offered LVR and whether it would be valves or surgery but I had my CT scan on Saturday to, so that's the first step made! Meanwhile, other stuff to do with my heart. I have an echocardiogram later this week, think that's probably just routine and nothing to do with the LVR though my thought is that it is just as well, as I guess they may query my heart condition when considering the LVR. Good luck, I do hope your breathing improves, mine is really bad too at the moment, maybe change of season? Everything seems to effect it! A miracle would be wonderful!
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