LOW SPIRITS

Within a week of leaving hospital we spent a few days with family in North Wales. I was still coughing and feeling somewhat 'fragile' but in good spirits and, as I knew we would, we had a brilliant time. So much laughing....I am so fortunate to have such a lovely family.

However, living as we do on ground floor level, and given that my daughter and family live in a house spread over 4 floors, it is not surprising that the stairs gave me some real problems. The house is rented and has 4 bathrooms and a shower room!!! That is 5 loos/toilets/whatever you wish to call them - but not one on the ground floor....every trip means up a floor or down a floor!!! Who goes down must go up and so forth. After a couple of days I needed some time to get up the stairs with a couple of stops and then a sit on the bed before ..... and coughing so badly I just couldn't breath in between coughing spasms - which makes life pretty difficult and scary. The day after we returned home I presented myself at the hospital. COPD was mentioned, as was previous smoking damage(I gave up over 30 years ago!). Those who follow my blog may know that Bronchiectasis (a form of COPD) is a real fear of mine as my mother suffered very badly from this with her CLL). It also appears from arterial blood tests that I am 'over-breathing' and this is not helping. It is not panic because I can't breathe, it's just I can't suck the air in enough to get my breath. I have lung function tests in a couple of days. I am also being seen on a weekly basis for my CLL by a different doctor as mine is away. This doctor believes the coughing could be viral. Meanwhile my pill collection is growing and I will soon need a shopping trolley if I want to go away again. However, this begs the question 'will I be able to go and see my family again because of my problem with the stairs?' It is about a 7 hour drive each way and with my grandchildren in school/college and studying for their exams and my daughter and son-in-law working, it is not practical for them to come this way. I admit my 'pity party' has lasted 3 days now. The future doesn't look fair to middling - it just doesn't look much at all at the moment. I am on steroid withdrawal (YET AGAIN) with no guarantee that the new drug is working and that the AIHA won't blaze into action (probably around Christmas if my body follows its general pattern). Anyone have any shafts of light they can send in my direction?

NHS GP SURGERY PRACTICE NURSES

Just here to blow off steam..... For the last few days....maybe even since the splenectomy 2 weeks ago, I feel like I've been kicked in the left kidney area. Yesterday after an hour journey in the car, with the kidney area supported on a folded blanket, it was somewhat uncomfortable by the time I got home. I have been eating paracetamol on a regular basis for 2 weeks. It helps a bit but not much. Today I decided to test my waterworks. It showed BLD-SNG ERY_HB 25+ hemolysed. Now I'm no nurse or doctor and maybe my kit has not been stored correctly and I don't know what +25 means but I know its a couple of stops up the scale from what it should be if the dipstick is correct. I phoned the hospital who 'advised me to go to the surgery, see a doctor or nurse pronto to get it checked professionally and maybe I would need some antibiotics for an infection. Get back to the hospital if necessary'. Brilliant, quick advice from a specialised cancer nurse who knows I wouldn't phone for advice without good reason. So I phoned my surgery....
No appointments today....that's good then....so I quietly stood my ground and got an appointment with the practice nurse who is allowed to issue prescriptions. She found no trace of anything and I explained about the pain. What I got was 'there's nothing in the sample'.....(so go home little lady and stop wasting my time, and what are you doing with your own test kit!!!) - nb. the hospital gave me a test kit during chemotherapy when I kept getting infections and I didn't want to keep visiting the surgery unnecessarily!). So with absolutely no sympathy whatsoever for the pain, and feeling like a hypochondriac and with no antibiotics, I left. I didn't feel like bothering the hospital again, although I know I will be in trouble on Monday for leaving it, but I haven't the heart. Back to my hot water bottle and paracetamol. I know the hemolysing is supposed to have stopped, but I feel it is back. I have the shakes and the radiating pain in my jaw which presents when it is back. My chest vibrations too. It could just be that I am coming off the steroids pretty quickly as well which doesn't help. I feel a big pity party coming on.