We were due to meet my urology consultant Monday last week but when we arrived for the appointment we found that he was on holiday and instead we saw his registrar.
The registrar dashed our hopes of a quick operation and told us my name wasn't even on the list yet for my operation to have my kidneys removed. Plus, he said he couldn't add me to the list until the urology consultant returned from holiday which isn't until next week. It could be 3 months or more before I get an operation scheduled.
The good news was that he believed both kidneys cold be removed at once by looking at the CT scan. The scan revealed that my kidneys completely fill my abdomen space - they are huge.
Over the last 3 weeks I've had increasing back pain and moved from cocodamol to a stronger codine pain killer, then on to tramadol and I'm currently on morphine patches and also tramadol - although after 3 weeks this is no longer dealing with the pain and I am in serious pain every time I move. Sleeping is difficult. Moving in and out of bed causes excruciating pain. I tried to go to church on Good Friday but the pain was too much and we came home. I managed church on Easter Sunday because my daughter was coming with me - but it was very painful and tiring so until I get some better pain relief I'm not moving very far and am housebound other than for dialysis sessions. The doctor has just doubled my morphine prescription and added diazepam - lets see if this has any effect tonight.
We have discussed having home dialysis which was seen as a very good step for me by my nephrology consultant and the dialysis team - so we'll have a meeting to check out the house and may get the equipment installed by June. This will enable me to dialyse every day for two hours which will give me better blood filtration and reduce some of the restrictions in my diet and fluid intake. Home dialysis will require Joybelle to be my carer as you're not allowed to home dialyse without someone else present to support you.
Becki (my step daughter) saw me struggling to get out of bed today and has decided to try and do something to help. She wants me to get the kidneys removed ASAP in a private hospital. She doesn't want me to put up with the intense pain or have to wait 3 months or more for an operation. We've found out a cost of £6000 and she's setup a donations page on the Internet. If she manages to raise the money then I will go private for the kidney removal operation.
This is the link for the fundraising website Becki has setup - http://www.youcaring.com/medical-fundraiser/raising-for-rob/50815
Thanks for your continued support and prayers.
Rob & Joybelle