I’m getting very worried about my oxygen levels. I have chronic hypersensitivity Pneumonitis with Fibrosis. On 24 hour oxygen and on lung transplant list. Trying to stay fit to help with the post operative recovery but the slightest activity now makes my SAT’s plummet. Despite using the oxygen, my levels dropped to 55% when I got dressed very slowly this morning. They recover quite quickly to 90% when I rest. ( never any higher despite continuous oxygen). I had a telephone consultation with my Consultant who said there is nothing else they can do, and that I must do things slowly. If I went any slower I would be in reverse.
Only solution is a transplant, and they are still suspended because of Covid. I really feel I’m running out of time. I feel so angry about my illness and also frightened that one morning I won’t be able to breathe!
A year of shielding, and a year of rapid deterioration. My husband now does all the chores.
I am at a loss as all the professionals say it’s just a case of waiting and hoping the transplant will happen.
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mary1956
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Just sending you a hug. I don't have your severity of lung disease or the same disease but I have definitely seen mine take a dive over this last year. The pandemic has done so much damage apart from those succumbing to the virus. Thinking of you xx
So sorry Mary I hope you find you have better days much more often that those with difficulty. Hope you are soon feeling much better this evening and a good weekend ahead. x
Hello Mary, best wishes and hugs. I hope something positive happens for you soon. Please let off steam here as often as you need- everyone has a right to when things are getting them down. xxxx
Hi Mary so sorry to hear you are struggling. I’m in a similar situation so here’s my tips.
1) you will have limitation but look on them as a starting point for setting yourself small goals.
2) I have some days better than others. Try to gauge what kind of day it’s going to be and see if you can challenge yourself or not.
3) Don’t worry about the days you’ve not managed to exert yourself.
When dressing I try to focus on how comfortable my breathing is and slow down or stop to catch my breath before moving onto the next item of clothing. My big issue is the fact my sats dip without me noticing, therefore I don’t slow down so they continue to dip as I’m not getting the signals until I have got myself into a bit of a situation gasping for breath unable to do anything (sometimes with the panties only through one leg 🙈).
Sometimes it can feel like taking one step forward two steps back... keep at it.
Thank you for your reply. I agree about oxygen dipping without noticing. I’ve found that they usually drop about 2-3 minutes after doing an activity, and this certainly needs to be factored in! Thanks for the tips.
Thank you for posting Mary. Like you I have deteriorated this last year, my exercise tolerance has gone right down, my oxygen levels aren’t good , and I’m very tired all the time. I’m hoping the sunshine coming will start to make a difference to all of us.
Mary it is very worrying when you’re sats drop so low and you can’t catch your breath.I am 64 with ipf and emphasyma and use oxygen 24 hrs .All I can do is turn the oxygen up and lay down when it gets so low and it does recover.I have been turned down for transplant due to other health problems so just the antifibrotic drugs and hope for the best.I think you just keep pushing for the transplant and take things as easy as possible.All the best and hopefully the transplant is not too far away
Really feel for you , as I am in a similar position, but was turned down for transplant as they said I would not make it through the operation, so just have the anti fibrotic drug , as there are no more options. I too set smaller goals ,and have to take each day as it comes .Hope your transplant comes sooner rather than later , at least there is light at the end of the tunnel for you, so hold on to that .
What hospital are you with Mary 1956? My husband is with the Freeman and they are back up and running, unfortunately he has an infection so I’d not active at the moment, so hopefully your hospital will be live again soon 🤞
Hi, I’m with Birmingham. Consultant said they have the biggest ICU in Europe with 100 beds. This was increased to 200 at the height of the pandemic but was still not big enough. Hopefully it will be able to accommodate transplant patients soon.
So angry to hear they have cancelled transplants.😡😡Churchill would have commandeered every private hospital on the country and turned them into emergency operating centres with isolation rooms.
The nightingales were meant to relieve the system and thousands of non covid patients could have been moved there to free up theatres and wards etc.
As others have said take it slower and hopefully the phone will ring soon.
Stay positive Mary. I do not have the same problem as you but I do have times of low oxygen levels and understand how you must feel. Focus on the positive, your husband is there for support and help you when needed.I hope soon you will get the medical help you need. Best wishes. 🌸
Hi, I didn’t start oxygen until quite recently because my oxygen levels recovered quickly. I was glad to postpone it for as long as possible. Good luck to you.
Mary, sorry to hear you are struggling so much. It's so difficult to accept there is nothing to do but wait. I have discovered anger takes up so much energy that you need to preserve to do the things you enjoy. A few people I know have had operations recently so the transplant list should start moving. The pandemic has caused us so many problems. Sending warm hugs. Meg 🤗🤗xx
You are so right about anger, such a waste of energy. Have been counting my blessings in the last couple of days, and feeling more positive. Thank you for your reply.
I dont understand about the transplants. Can person walk after having it, how long will live and what quality of life will have. My problem is that I smoked. I dont know did you smoke before. I just want to undersdand how much I have lung problems and how much anxiety. And how to live with it. Sometimes I just want to stay in bed and to sleep.
The doctors telling me that I dont have any lung disease that it is anxiety only. I feel that I have problems with lungs. And they.tell me that my lungs are good aftet 2O years after smoking. I think its not truth. I am so scared I could not walk I tbink. And I am scared about my future. Can lung trunsplant make people disabled?
You really do not need to worry about transplant if you have been told your lungs are ok. There must be another reason for your concerns, maybe anxiety. Please trust and listen to your doctors.
Hi Mary. My husband is in a similar position to you and is really struggling now. He has had a lung transplant assessment and is supposed to be going on the list but had to have his diaphram measured on Friday just gone. Apparently this was missed on the assessment so he is not yet quite on the list. He has deteriorated since December and is due another oxygen assessment next week. Currently on oxygen 16 hours a day. He has idiopathic pulmonary fibrosis stage 4. I feel angry a lot on his behalf because other than the anti fibrotic drugs or transplant there is nothing else that can be done. It took so long for him to be diagnosed and by the time he was, he was already in stage 4. I hope you get your transplant soon xx
I think the hardest thing is the length of time it takes to diagnose. Often the condition is present for years and then mid diagnosed. By that time the fibrosis is there and irreversible. I have been lucky to have had 6 years of stability, so although it affected me greatly I was able to adjust and carry on. This deterioration has coincided with a year of shielding. Now loads of delays that need to be accepted. Best wishes to you and your husband.
Thanks Mary. It's been a nightmare. I feel angry most of the time but still trying to do my best. You feel so helpless and there's very little support. Best wishes. XX
I too have had feelings of anger etc. Acceptance is difficult and this last year has been tough. It’s the unknown that is so scary. This site helps so much. Message me any time
Hello I have only just come upon yr post. I really hope you have had some better days. I have HP to, don't know the trigger. I have nothing to complain abt compared to you. When I was 1st diagnosed 4yrs ago they told me to get ready to go on the LTList. As it turns out I can't tolerate the drugs needed so that's not an option. I have made much progress since then so hv had some luck, tho I can't work -early retirement and financial chaos tho. Best wishes and I hope you have a good Bank Hol.
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