16th June - 100 days post transplant YEAH!

Well today, Saturday, is the first major marker after leaving hospital. The first 100 days are a very critical and I have made it through without any major problems. No GvHD and no CMV.

All I can say is that God is good!!

I now face the next 100 days when drugs are reduced and I pray that we get through this time as easily as the first 100 days. I have now started on a Tacrolimus reduction program and come of the drug mid July. Tacrolimus keeps the immune system low so as to try to avoid rejection and enable the new stem cells to become encrafted, so reducing the drug brings the immune system back on line and hopefully nothing will happen. There is the possibility of chronic GvHD, but this can also happen up to the end of the 2nd year following transplant. Getting back to 100% fitness is going to be a long haul.

Well Friday was one of those days! Had a bone marrow aspirate, this was the 4th I have had and it gets no easier, my backside is still sore. The results of this will be key to how my recovery is going so I am hoping that the results from this will be positive.

My Haemoglobin had fallen again and is now at 11.9, but my platelets were up at 102. Neutrophils were down at 1.61. Dr Crawley was not concerned and only wants to see me in three weeks time and no blood tests in the interim, so I guess this must be a positive. I had two of my drugs stopped, so am down from taking 22 tablets daily to 17.

Hair has started to grow, though I must admit that I look like a badly plucked turkey - not a pretty sight!! I have to shave daily now otherwise Mary complains.

9th June - 93 days post transplant

Sorry for the delay in this weeks update. Friday was just bloods and I do not have the details. I guess they must be OK as no one has called me from the hospital. Weight was also done which showed a slight increase. Mary's force feeding must be doing the trick!!

Was not feeling that brilliant over the weekend; I think I might have over done it a bit; and just forgot about writing my blog. Nothing too much to report. Stomach and nausea still being a problem. Skin is now dry all over my body and flaking off. E45 being applied in copious doses. A start has been made on the reduction of Tacrolimus - the drug which suppresses my immune system. It will be interesting to see what happens as the amount of Tacrolimus reduces.

Discovered on Friday that I cannot have the drug to reduce my iron overload until I have had another bank of tests. Got to have my hearing checked, eyes checked and another heart scan. I think that only leaves the brain to be studied and they may have a problem finding that as I think it has gone on holiday considering the amount of things I seem to be forgetting right now.

Had the "bum fluff" shaved of my head over the weekend so that I don't look so daft. Hair is coming back on my chest and I now need to shave daily. All good progress.

I see the consultant this coming Friday so let's see what that brings.

2nd June - 86 days post transplant

Sorry all followers, I forgot to hit the publish button.

Friday was an interesting day. Weight has gone up slightly, bloods are fine as are platelets and neutrafils. Having chemo brain I forgot to pick up the results so cannot give you actual figures.

I was also given a reduction plan for Tacrolimus (immune suppression drug) which starts on the 8th June and I stop taking the drug on the 18th June. Of course there is always a catch!!! Bringing my immune system back up slowly may cause Graft versus Host Disease to kick in which I hope does not happen!!

Now this may be the reduction of one tablet, but to make up for it they have added another to the pot. This is a tablet to reduce the iron overload that I am suffering from due to the blood transfusions I have had over the last year or so.

Another little present I received to day was my appointment for a bone marrow biopsy for the 15th June. Aren't I the lucky one!!! Now where's that cloth I was biting on the last time I had it done!!

My GP now wants to see me as my yearly heart review blood test has shown that I have a high glucose level of 6.7. Apparently 7.0 puts me in the diabetic category - wonderful!! However my consultant at Addenbrookes says that it could well be caused by the Tacrolimus so it looks as if it is going to be another waiting game to see what happens when the Tacrolimus is reduced/stopped. I think my body would suffer less if it was playing rugby for Wales against England!

I did have a couple of poor days this week. It transpires that I managed to overdose by 2 tablets on my new drug that fights chest infection - result could not sleep (got maximum 2 hours sleep one night) and was feeling sick for a couple of days. Trust me to foul it up!

26th May - 79 days post transplant

Don't panic Mr Mannering, don't panic is the order of the day. Sorry for the late posting but have been waiting until I could get Friday's results from Addenbrookes. These show a slight fall in Haemoglobin, neutrafils and platelets but I am assured that this is within limits and no call for concern. Bio-chem results are OK.

75% of the way through the first 100 days yippee, but in 21 days a bone marrow biopsy and bone sample awaits. Oh joys!! I'll be lighter on my right hand side due to bone loss!!

Metal taste is starting to decrease, but still problems with my stomach and retching over some foods. I am still loosing hair and also growing it at the same time. I think we may still be in a negative hair loss overall.

Discovered that even covered up I cannot cope with the heat. My preferred time of day is now at eight in the evening sitting on the patio, but darn it I just dont like the taste of beer!!!

This week has been a special week in more ways than one. I had my first "real" day out; as opposed to a trip to Addenbrookes; when I went to Huntingdon to celebrate Tizzy's husband Chris's birthday which we celebrated in an Italian restaurant. Meal was booked late so that the restaurant was virtually empty I manageed 75% of a white bate starter and 50% of a massive pizza. Then Chris and Tizzy  broke the good news that a baby is on the way and due in December. Oh I do feel old!!! Sex as yet unknown.

19th May - 72 days post transplant

Not much has changed this week. Eating is still a problem even with Mary cracking the whip!!! I seem to have a strange relationship with food. I have never been a big desert eater, but now tuck into them with gusto. Pizza is good as are bacon sandwiches, but chicken and roast beef meals are really just not on. I'm taking an approach of eating what takes my fancy.

Haemoglobin has fallen a little, but nothing to be worried about. Platelets and neutrofils have risen and the consultant is convinced that it was the Septrin that had caused the problem with them falling. He has already prescribed a new drug for me to use from next weekend after bloods have been taken (they need to check an enzyme in the blood before I can take it). It now looks as if  it is still a weekly visit to Addenbrookes, with one week being blood tests and the following week being consultant and blood tests. This is far better as, on bloods only days, we are home by 10ish.

Apart from the food issue and the metallic taste all seems to be progressing well - on good days I can get up with Mary at 6 and stay up with her until 10 : 30 with a short rest during the day. On the not so good days it is still  bed at 7 : 30 to 8 !!!

12th May - 65 days post transplant

Sorry that this week's blog is a day late. This Friday it was only a visit to have bloods checked and since then I have been hoping for a call from Addenbrookes (as previous) on the Bio chem results. I was then going to ask them for the blood results. No such call so all I can assume is that all is all OK and I'll have to make a call tomorrow (Monday) to see if I can get them. I have a set of results for each Friday for my haemoglobin from the 30th March, so have plotted these for those interested in data. A steady rise!!!

Still of Septrin and feeling good without it.

I managed to do my back in last weekend which has made this week a little difficult. The back is getting better slowly and I now just have difficulty getting out of the settee and chairs.

Eating is still a problem and is most bizarre. Today I had two bacon sandwiches for lunch and ate them without any problems and with gusto. However when it came to my main meal in the evening it was a real struggle which I gave up on except for the pudding. Now that is strange because I am not a pudding man!!!

Other than that the week has been a reasonable one.

OK, Blood tests are in and they are good.
Neutrophils have risen from 1.87 to 2.72 [now inside range 2 to 8]
Platelets have risen from 80 to 85. These have a bit of work to do as the range is 150 to 400, but the consultant said that they are slow in recovering. They need a kick up the proverbial me thinks. However one cannot complain at the little things as they were 40 before I went into hospital.

Mary went to the doctor today and has a viral infection mainly in her throat. Just what we needed. Spare bedroom for me for a while!!! Not that I don't love but she can keep her own bugs.

5th May - 58 days post transplant

Well this has been a strange week. We had a stressful time due to last week's results for although we were pretty sure that the cause of the dip in the results last week was caused by a reaction to Septrin (one of my drugs) you cannot help being concerned until you know for sure.  This was lifted to a degree when it was the consultant's "side kick" who came out and called us in (over 2 hours after our appointment was due!!). This was reinforced when we got the results.  Platelets have gone up from 79 to 80, which basically means they have stopped falling and are constant and Neutrophils have gone up from 1.49 to 1.87. He seemed to believe that Septrin is the problem and gave me an appointment for blood tests only for next week and an appointment for blood tests and clinic with the consultant the following week. He was a really pleasant, helpful doc who said that they should know for sure next week. I have to stay off Septrin for the next two weeks. Hopefully we will now see an increase in both the Neutrophils and Platelets.

This feels like a real step forward. Whilst Mary thinks the shops at the hospital are a good distraction she reckons she knows their stock levels better than they do!!!!! Spending nearly all of every Friday there is not a great way to spend the day. Even if I have to go for bloods every week and clinic every other week it means that we can leave at 06:50 and be home by 10 on blood only weeks leaving us with the majority of the day free.

Heamaglobin has gone up to 14.00 [norm is in the range of 13.00 to 17.00] which is amazing for me and generally I feel pretty good if rather tired on times. My weight has stayed the same this week which they were pleased with as it looks like I may have stopped loosing weight. This is partly due to Mary working very hard to feed me including a bowl of chocolate treats in the lounge etc. She complained to the nutritionist that this may be helping me but certainly not helping her!, apparently this is a common complaint of partners. My results showed a need to increase the tachrolimus tablets to 2 milligrams per day from 1.5 which is nothing to worry about but good to know that they are keeping a close eye on things. Also my kidney function is still OK.