Good advice Erica re breathing problems, as always the first port of call should be your GP or specialist team. I am completely sold on Slow Long Deep breathing exercises. I began them when I was first diagnosed with Chronic lymphocytic leukaemia (CLL) in 2018. Apart from the obvious benefits to my health in general, I find it is a good indicator of Lung problems, of all types. I cannot extoll the benefits enough, one really has to try it out for themselves. There is lots of Science and Medical research to support these Breathing Exercises, and it is certainly not a fad, as is sometimes indicated, by the ill informed. For anyone worried about their breathing, I would say see your GP then if they give the ok start ‘Breathing’ well.
Hi Marylin sorry to hear about your ailments, you seem to be going through one of the ‘Bad Times’ so common amongst us Chronic lymphocytic leukaemia (CLL)’rs.
You don’t need to apologise for a bit of ‘Self Pity’ most of us attend a ‘Pity Party’ now and again, it’s quite natural.
Stay positive, and politely assertive when speaking to your GP and Haematoogist teams, you owe it to yourself.
Hi all
The breathing isn’t any better but an X-ray showed patches on both lungs indicating pneumonia and that I was still suffering from it. More antibiotics. Second X-ray showsno improvement but am waiting to speak to a GP.
I have an appointment with sleep apnoea team but will need a G P referral to the chest clinic before I can see. a consultant. My INR shot up to5.6 then down to 2.4 it has yet to stabilise . I suppose it isn’t any wonder I have feeling so rough. The haematologist told me my red cell content has sagged to just below normal, another concern to worry about, won’t know more until next blood test in 3 months time. My Polycythaemia vera (PV) research says Polycythaemia vera (PV) can tip into leukaemia with Hydroxycarbamide treatment, a little knowledge is a dangerous thing, I know. I still can manage to enjoy the roses and dahlias they are such a blessing together with the rest of my little garden. Marylin
Oh @Marylin it is so good to hear from you., but I am really sorry that you are still struggling to breathe and feeling so rough, this has been going on for ages.
Perhaps write all your questions down ready, yes, a little bit of knowledge can be a dangerous thing and play on my mind!!
After all the work you have put into your garden I bet it looks a colourful .
picture, roses and dahlias absolutely lovely.
If you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888,
Look after and be very kind to yourself and let us know how you get on.
Hi @Marilyn, thank you for sharing this update. We’re so sorry to hear what you’ve been going through- it sounds like a lot and must be tough to have so much on your plate right now. We’re here for you if you need any support at all, so please don’t hesitate to reach out (Blood cancer information and support by phone and email | Blood Cancer UK).
Hi
Sorry I haven’t been in touch but have been feeling extra tired and off colour. After 24 hours waiting for a bed and4 nights in hospital, where I. Seemed to undergo every test known to man, I had 2 ECGs, an X-ray, a scan, ails of blood taken, been nebulised, canulised, pricked poked and prodded. I came out little wiser as they said further tests were needed. However GP explained that the high pressure in my lungs was making my heart work too hard. preventing oxygen getting into my blood. MY stats are in the low 80s causing panic and total inertia. I had another scan this week no results as yet.
I am trying to keep well as my daughter has arranged a tea party for my eightieth birthday next week. I don’t have to do anything just sit and chat.
I was beginning to think I would be lucky to make it. We have now agreed I am allergic to steroids which make me feel rotten.
I hope all of you are doing better than I am. I still have violas in flower as well as the last few roses. Also a clematis coming into flower. So really I am ok, Marylin
Oh @Marylin what a horrible time you are going through, I bet you are feeling extra tired and off colour.
You certainly seem to have had a full hand of tests and more tests are needed.
Then you have the extra pressure of being and feeling well for your 80th tea party, why do I get stressed even when I do not have to do anything???
It’s my son’s 50th on Monday and I am all prepared apart from buying the cake (well, he wants cheesecake)
I am glad your garden looks good, I am imagining it, I love autumn and the leaves have certainly held on this year.
It’s OK not to be OK.
Really look after yourself ready to be the Belle of the Ball and please keep posting as results hopefully shed a light on what is going on.