chrisb's journey

[Tibbs]

Glad the op went ok - hopefully you'll be back on the list asap!

[Dixie1]

Good news Chris! Glad it went okay.

[chrisb]

After feeling as bouncy as Tigger when I left hospital my HB plummeted to 6 a week later and I could hardly move or breath. Consultant wanted to wait and see if it would improve on its own until it got really scary being on my own at 4am one morning unable to breath when I left a message on his ansafone begging him to do something. I was called up to the hospital next day for an iron transfusion and an examination to make sure I had no bleeding from my operation.he said it will take about a month to get back to how I felt when I left hospital which is very frustrating. On the bright side I can drive again now so at least I can get out and about a bit and not feel housebound.

[wagolynn]

Hi chrisb,
Thank goodness you got that on it's way to being sorted, it must have been very frightening having breathing problems on your own.

Do you know if your EPO levels are OK?

[chrisb]

Don't know the current EPO level although I have one each week - I will ask the staff. they are doing weekly blood tests so we can keep a close check on the HB count.

[jbell]

Hi chrisb

what a scarey time, I am so glad you now know what is wrong and it is being dealt with. With any luck you will be feeling back to your old bouncy self in no time

[chrisb]

Here I am one month later when my consultant said I would be back to my pre-crash HB level of 12 and I am only at 9. On the plus side I am beginning to feel stronger but I had hoped for a bit more improvement before my holiday in 11 days time

[chrisb]

Here I am yet another month and another iron infusion later and my HB is still only 9.7 after taking another dip .

I have got an appointment with transplant peeps tomorrow but I told my consultant that I did not want to go yet as I am 5kl over my cut off weight and it is creeping up because I do not have the energy to do any exercise because of the HB.

When I was on holiday recently the NHS dialysis unit that I attended (Torbay) had pedals that could be attached to the foot rest on the chairs. What a wonderful idea. I emailed the company that runs our unit BBRAUN asking if they could offer this to patients who could, or wanted to, benefit from a bit of exercise while sat there for 12 hours a week.

One month later and I have not had an answer.

I can't be good for us to spend so much time unable to move but of course it would mean spending money on something that is not necessary from their point of view but from my point of view would improve my wellbeing.

Does anyone else out there have this facility?

Finally, I have taken the plung and booked my first cruise I'm sooo excited but will have to calm down coz it's not til September

Hope everyone is going along OK and that glass remains half full (for those of us on strict fluid restriction it can never be any more

Bye for now
chrisb