Wednesday, 13 May 2015

Progress Update

Work is going really well and I'm working four full days with a rest day on Wednesday.

At points during the work day I do feel exhausted (usually around lunchtime) but once I get through that difficult hour I feel fine. So I'm trying to build rest into he middle of my days. I've felt dizzy and feint at times but my team are excellent and look after me well.

I tend to start early and finish late - in an ideal world I'd like to get all of my hours for a 5 day week into 4 days. Work have been very supportive and accommodating. 

My key stats are positive although my potassium and phosphate levels vary quite a lot so I'm needing to manage my diet more closely. My dialysis fluids have been modified a few times to keep my potassium levels correct and I'm taking phosphate binders at times to manage phosphate levels down.

Chemical blood levels and my health are more difficult to manage now that both kidneys have been removed - its amazing how much our little kidneys do to mantian a healthy body and precise balance of many chemical levels as well as removing toxins and waste.

Home Dialysis is going well. We rarely have issues and we seem to have a good routine - I'm so glad we have everything at home it has had and is having a profoundly positive impact on family life. We now do five evenings a week which is a bind and severely reduces social life - but I couldn't imagine having to go into hospital five evenings a week. Our life works well around dialysis and it just feels normal now.

My blood pressure is low and I'm taking tablets to try and push it upwards.
Often after dialysis my BP is at 90/50 or lower and on about 6 occasions I have completely blacked out and crashed to the floor - most recently on Saturday last week and for the first time when my wife Joybelle wasn't around - so this shocked my children.
As a result of these falls I seem to have permanent large bruises on the right side of my body - falling to the right seems to be what usually happens. We'll monitor this and try and resolve by increasing my BP  It was less than 3 years ago that I was on medication to reduce my BP! Now I need it to go up.

I still struggle with very sore feet and hands at times and this means I walk very slowly due to the pain. Sometimes I can't even lift my arms in the mornings if I've had dialysis the evening before.

I'm sleeping well most nights which is positive and that's enabling me to get to work. My Haemoglobin levels have risen after increasing EPO injections so this is also helping with my energy levels.

I recently had a significant skin problem (Guttate Psoriasis) which covered my whole body with sores and my skin was flaking off all over the house much to Joybelle's annoyance. I saw a consultant this week who said my condition was severe and although much improved gave suggestions which included a holiday in the sun! Good job we're off to Spain soon for a week of sunshine! :)

Six months ago I had an ultrasound which showed a fatty lump under my arm called a Lipoma. It is annoying as it puts pressure on a main nerve so I can't have my arm close to my body so sleeping on one side is difficult at times. My doctor did refer me to a consultant to have it removed but Gloucester hospital rejected my appointment and said there was no funding - a sign of the times we live in.
The NHS just doesn't have the funding to fix everyone because of the increasing population. 

This year we said we wouldn't let dialysis stop us doing things - so we are going to Spain twice, London for a weekend (Hillsong Conference) and a weekend in Bournemouth over the Airshow weekend. Having home dialysis means we can dialyse anytime we like - so we can do it early in the morning or very late in the evening to enable us to get out and about and live as close to normal a life as possible. We're having dialysis in different hospitals whilst on holiday - this is funded by the NHS which is amazing and we're grateful that this provision allows us to go away on holiday like a normal family.

I've now been on he national transplant waiting list for over 3 years. The average wait for a kidney is about 3 1/2 years so we are getting closer - let's hope I'm an average person!

Every night I go to bed hoping that I'll get that call from the Bristol transplant coordinator in the middle of the night!

Thanks to everyone who still asks how we are - we really appreciate your support and prayers. 

Keep praying for the perfect kidney transplant & also for my blood pressure to behave itself.

Rob & Joy