Thanks girls for your congrats re the ESA thing.
Jacee, I had read that 02 doesn't end breathlessness -- but you're right, I have been forgetting that and imagining myself skipping along like a ten year old with not the least sign of a huff or a puff. Oh how we delude ourselves!
Still, I am not totally devastated by the news. My main reason for wanting it for so long was because my oxymeter has been showing that my sats drop just putting the kettle on, let alone walking home from the paper shop - which has me really gasping with 02 of 74 and pulse 135. It got so bad once that I ended up on my knees gasping in the middle of the lane , feeling that I was about to die and losing any vestige of bladder control. I hasten to add that my bladder is normally fine -I mention the incident as it can be very upsetting (especially in a public place) and anyone else who may have experienced similar should know the reason for it. If your 02 drops to a serious low your body knows it must use it wisely and feeds it to your brain, heart, and major organs at the expense of lesser organs such as the bladder. Embarrassing it may be, but far better than having a heart attack. Anyway it was that incident that prompted me to buy the oxymeter.
Around the same time my feet started to swell pretty badly and a huge pair of mens flip flops became 'de rigeur' as nothing else would fit. I knew this could be due to the heart struggling to keep the body oxygenated and asked the Doc for a blood test to check my hematocrit (present in the red blood cells) levels. For anyone wondering about this the following is a guide;
WOMEN ; 36 TO 45% hematocrit
MEN ; 42 TO 50% hematocrit
This can be checked for as part of a complete blood count . My level was 50% which you will see is top end of the scale for a man. This showed I was at risk of developing Cor Pulmonale if it went higher, say to between 51 and 55%.
As I was struggling, this is the time when I gave up work and the swelling in my feet gradually went down. I now knew that in order to \"keep safe\" I needed to slow down and take things easy until such time as I am put on 02. If I hadn't gone to pulmonary rehab I don't know what I would have done, because my Doc, lovely as she is , seemed vague at best about sorting out some 02, saying it wasn't up to Doc's anymore.
In contrast as soon as I mentioned my 02 levels to the nurse at 'rehab', common sense and efficiency took hold at last and she put me on an oxymetre while doing gentle exercise, slow walking etc. She immediately made the appointment to be assessed.
The problem with low 02 is that it becomes a viscous circle. You do less, become weaker, your heart struggles more, you put on weight which means you need even more 02, you want to exercise but can only do it gently, so the weight just sits there . And all the time your muscles get weaker and use even more of your 02 and the capillaries surrounding your muscles and lungs get fewer and fewer.
What I'm really looking forward to is being able to exercise without fear. Breathlessness maybe, but even that should become less over time with regular and increasing levels of intensity and duration. I know it will be a huge struggle to start with, but I've been practically salivating looking at my beautiful treadmill and wishing I could use it. Even the lowest level for 20 seconds has my sats way too low at the moment.
I did find at rehab that the exercise bike was really easy compared to a treadmill! I was surprised, but it was explained to me that it was often the best place to start. I was still only allowed to use it for one minute, but was told that if I had one at home I could do one minute on and two or three minutes off and repeat - even while waiting for my 02. Sod's law of course I don't have one but am looking out for a second hand one.
Ladies hand weights too! Then I will do a few minutes treadmill, a few bike, and then an upper body workou