28th April - 51 days post transplant

They did warn us that there would be hic ups along the way and we have just discovered our first hic up!!!

After a pretty good week with areas of progress like being able to take the stairs two at a time with little effort and then, as a real plus, remembering why I had gone up stairs in the first place!!!! we got to Friday -Addenbrokes day.

We arrived at 8 O' clock for our 8:50 appointment, as they have to do bloods first, and then waited until 10:20 before going in to see the consultant. Unlike all the previous visits he was not too impressed with my blood results!!! My platelets and neutrofills had fallen quite significantly over the last 2 weeks. He said this would be for one of 3 reasons - a virus (but I haven't been unwell), one of the drugs I am taking, Septrin (so he has taken me off this for the week to see if that is it) or failure of the transplant.

The other results were OK so haemoglobin is still over 13 and whereas my kidney function was a bit dodgy last week it is fine so no need to change the tachilimus level plus all my other bio-chemical results were fine.

On the whole I feel I am getting stronger and better but still have the odd down day. This weekend has been a bit like that. I managed to sort out the tumble drier which was so full of fluff it began to smell of burning (I am sure Mary was hoping to burn the utility room and kitchen down as they badly need replacing) which I couldn't have managed a week ago. But on the other hand I have felt pretty ropey and emotionally drained.

Please keep praying- especially that the results next Friday show that it was the Septrin and all is back on track.

21st April - End w/k 3 at home

Overall this has been a good week. A few small ups and downs, but nothing serious. I now have a rota of people baby sitting me and already have had to disappoint two ladies who were offering bed baths - I was up and dressed!!! My sitters are a great help and I could not do without them at the moment as they provide the security I need.

There is a slow sign of general improvement. I am eating better, not feeling so sick and getting better nights sleep. I tried a very small glass of wine last night and it tasted terrible, so some evenings I'm sticking to tea while others have a nice glass of wine!!!

Mary is trying to convince people that my dark skin on my hands is because my donor was dark skinned. After 36 years of marriage I still cannot keep her in control. As a Christian husband and considering what St Paul said about husbands and wives, have I failed???

Friday was a good day at Addenbrookes. Haemoglobin was up at 13.6 which is brilliant. I met a guy in clinic who made me realised just how thankful I had to be. At week 36 after his transplant he had hardly managed to get out of bed and there I was at week 43 feeling rather chipper.

14th April - End Wk 2 at home

Back to Addenbrokes on Monday which went well. Levels were good again and the magnesium tablets seem to be working so no drip today so a nice short visit for once. I was out by 11am!!!!

Unfortunately, despite being pleased with my results, they are determined not to let me rest as I am back there on Wednesday for more blood tests and then back again on Friday for my regular clinic. Mary is uncertain that she is really spending less time at the hospital than before!!!

Wednesday was a good trip as we were out by 2pm. The results were still good.

Friday was a good trip though we did not get out till mid afternoon. Interestingly enough, despite eating more now I had lost a bit more weight so cannot wait for my appetite to return fully as it will be a good excuse to eat all those things you usually feel you have to limit. Apart from anything else none of my clothes fit even with a belt. There was just a long wait between blood tests (My Haemoglobin level was up at 13.2 the best since around 2009/2010) and seeing my consultant. Once we got in there it took no more than a few minutes as he was pleased with the results.  Day 100 after transplant is a key day (Friday was day 36). By this time Acute GvHD [Graft v Host disease] should have raised it's head.and around day 100 is the time when Chronic GvHD raises its head. Though it has to be said that not all patients get either or both of these diseases. When we hit day 120 or there abouts I can start to breath a little easier. It is quite stressful waiting to see if I am going to be hit by either or both of the afore mention problems. One interesting little side effect is that my hands have gone a very dark brown. Apparently, according to Mary the back of my neck is too. The consultant didn't seem at all bothered and neither am I. If it continues to spread across my body I will have the best fake tan out!!!

Shaving seems to be a twice weekly affair at the most so Mary can no longer accuse me of being bristly as my face is as smooth as a babies bottom!!

Overall things are good, it is just difficult as you always want to run before you can walk. I just need to be patient and appreciate just how fortunate I am and how good God, life, family and friends are.

7th April - End of Wk 1 at home

Apologises to all that this has been posted a few days late.

Well Saturday sees the end of the first complete week at home. It has been a hectic week to say the least. The beginning of the week found me feeling the cold although the temperature in the house was set at 21C. So I increased it to 22C and started wearing a hat. As the week moved on my body started to adapt and have now reached late afternoon before I start to feel cold. That's a signal for tea and bed. I am sure that not being able to do anything physical does not help. However I can see progress which is encouraging.

Eating is still a problem as I can only cope with small amounts of food and drinking is an effort. Again, difficult as this is I am eating more and beginning to actually enjoy it sometimes.(This is no reflection on Mary's cooking but due to a churning stomach and a metallic taste). I have to drink over 2.5 litres a day and when you are counting every cup it does become tedious. The tablet count has gone back up, so show me a tablet and tea at the same time and I can be guaranteed to heave.

Went to Addenbrooke's on Thursday which was a sort of good day/bad day. Good as my line came out and my blood levels were still on the up. Bad as one of my trace elements was low, so that was two hours on a drip. Yes you guessed it, another full day at Addenbrooke's and an appointment for Monday at 09:30 (yes that's correct Easter Monday)!!! Do these guys ever sleep??? However spent a lovely Easter with the family who came home to celebrate and was pleased that they could see a difference as it is not always easy to do so when you are on top of it.                                  

Had a call from a doctor from Haematology on Thursday evening to tell me that my one of my bio-chemistry levels was too high and to reduce my Tracrolimus from 1.5mg to 1.00mg. This is one of my anti rejection drugs. Well at least one less tablet to take in the short term.

So next visit to Addenbrooke's is on Easter Monday.