We have reverted to dialysing every day which can be hard work as we need to juggle 2 hours dialysis (which takes 3 hours inc setup/set down) as well as try and have a life where we can actually go out some evenings. We found that dialysing alternate days caused me to feel more ill due to no blood filtration.
Once back at work this will become increasingly limiting as we won't have the option to dialyse during the day.
My hands are no longer blue. phew!
We think they went blue becuase we took off too much fluid during dialysis and there just wasn't the blood or pressure to get to my hands. Whilst my hands are a normal colour they are often cold and have pins and needles.
When I last wrote I was suffering low blood pressure and regular feeling feint or on a few occasions blacking out completely. Most people feel feint whilst on the dialysis machine if too much fluid is coming off - for some reason I don't and therefore it can be easy to take too much fluid off if we're not careful.
Managing my fluid levels and blood pressure is more critical and more difficult now that I have no kidneys at all.
I'm still suffering sore feet and hands, lowish blood pressure (100/60) and restless leg syndrome which stops me sleeping. But I do feel so much better than 4 weeks ago.
I want to return to work and have an appointment next week to see Occupational Health (who are very cautious!) and my boss (who is very cautious) but the doctor has signed me off as fit for work - so I just need to convince them next!
I'm sure most employers would be almost forcing me back to work - so I guess I should appreciate having such a kind accommodating employer!
I've spent my days over the past 3 1/2 months resting and also developing a leadership development website when I had the strength.
This week I spent a day creating a very simple website for my sister-in-law who is trying to raise money to modify their home so that my very ill brother can return home and live with his family. It's been 18 months since he was at home because of post op complications causing paralysis. He's currently in Stanmore hospital in London and the therapists are doing great work with him.We're praying for a miracle recovery for him - so that he can be a father to his children again.
If you'd like to buy a brick to help with his house modifications please go to this website
At home my Joy has been the ill-est I've ever seen her with a terrible virus that has turned into Tonsillitis - poor her. Really want her to get better but she's still feeling very sick today even after the GP changed her medication. She has spent several days not even drinking a cup of tea all day - how bad is that!
Please pray for :-
Joy to recover from her illness
For strength so I can return to work (and that they would let me!)
For strength to keep going with daily dialysis
That we would be able to manage our time to actually have some social time!
For that perfect kidney that we are desperate for
Thanks for reading.
We appreciate your thoughts and prayers.
Rob & Joy