18th November - 255 days post transplant

It is been some time since I updated my blog, so I thought it was time to do so. Well it is a bit positive, bit negative. I am putting weight on which is good, but I am suffering from GvHD which is showing itself with skin pealing off and problems with my stomach and bowels. I am scheduled to go into Addenbrookes and have a camera inserted in my back passage and a sample of bowel taken - nice!!!1

I am very tired as I am on a steroid reduction program with the reintroduction of the immune suppression drug Tacrolimus.

Funnily enough the hospital is pleased with my progress and my next visit is on the 30th November which is getting close to the birth of my grandson!!

13th October - 219 days post transplant

Well I am late publishing again mainly due to the fact that the children where home this weekend and we had Tizzy's baby shower, so apologises to all.

The last two weeks have been pretty rough what with sickness and diarrhoea coupled with loosing more weight, struggling to eat and drink and depression!!! However things started to improve around the 11th and the meeting with my consultant and support nurse at Addenbrookes on Friday was very positive.

According to all the blood tests and chemical analysis my blood is now 100% donor and there are no traces of the Leukemia showing in the blood. Praise the Lord!! The dryness in my mouth has improved and I now able to drink and I have started to eat. When I was weighed I was 63.4Kg, 60Kg is the critical level. I am now able to graze during the day rather than stick to fixed meal times so hopefully my weight will start to increase. 

My consultant stressed that I have had two traumatic events - the transplant and the three weeks in intensive care. He pointed out that the first has had; and will continue to have for at least 18 more months; a major impact on the chemical make up of my body and that depression is normal. This has of course been heightened by time in intensive care. Addenbrookes are setting up some meetings for me with people of a like mind to me who are a couple of years further down the road. They will be able to share their experiences and reassure me. If needed they will set up a meeting for me with one of their clinical physcologists. I cannot fault the care the hospital are providing.

The tablets that I am taking to reduce my iron overload seem to be working well. The level should be under 1000 and prior to starting it was around 6700. Now it is down to 2700.

GvHD seems to be getting under control and skin flaking has improved.

29th September - 205 days post transplant

Well, this is a little late being published, but better late than never.

I saw the consultant on the 29th and the rash had gone on my lower legs and lower arms, however it has now come out on my chest and upper arms. So application of ointment continues but in different places. 

Skin flaking off has improved, but is still a big problem on my scalp.

Saliva has started to return. It is helping the speaking but not that much help in eating. Talking of eating my weight seems to have stabilised at last. I have Scandishakes (liquid supplement) every day.

I have suffered a lot from acid indigestion which was making it difficult for me to eat in the evenings. I now have some tablets for this, which seems to be working - time will tell.

15th September - 191 days post transplant

Well it is still a roller coaster ride and definitely not what I had in mind this far after the transplant. The issues are many but all seem to be tied in together.

My skin is drying out and becoming like leather and I have a rash on the legs. Two weeks ago I was referred to Dermatology as they thought it might be a drug reaction. They gave me a raft of creams which sort of worked but not that well. This Friday my consultant decided that it looked as if I had a variety of graft v host disease (GvHD). So now I have a complete new set of creams and a strict application regime for the next two weeks which really means I cannot leave the house. My day goes a bit like this:-

• 8.00 am tablets
• Shower with soap free special "soap"
• 9.00 am apply steroid cream to legs, arms and face - have lost eyebrows
• 10.00 am apply moisturising cream
• 1.00 pm apply moisturising cream
• 1.00 pm tablets
• 3.00 pm apply steroid cream
• 4.00 pm apply moisturising cream
• 6.00 pm apply moisturising cream
• 6.00 pm tablets
• 10.00 pm tablets

On top of this I have no saliva production so eating is now a big problem. This in itself means that I am loosing weight which I can not afford to do. By mid afternoon I am also feeling very tired. My specialist nurse told me that it will take at least two months to recover from my one month in intensive care. This was quite a helpful comment as it set a boundary.

Well let's see what happens over the next two weeks.

25th August - 170 days post transplant

Hi all,

Well it has become a bit of a protracted rough ride. On the 13th August, yes 2 days after I came out I was back in Addenbrooks with another high temperature. I was out again on Friday 17th. The out come of which was that I had a severe reaction to two antibiotics. I have now been taken off these and every month have to go into Addenbrooks for a one hour session of having another drug via a nebuliser. This foul and has it's own side effects - nausea, fatigue, cough and caused a complete loss of taste and a continual dry mouth with no saliva.

How do I feel - Well my skin is pealing off in sheets, tired and generally fed up. I am sort of back at the stage when I left hospital. I feel cold, particularly late afternoon till I go to bed. Lost more weight after having putting it on.

Lets see what my consultant has to say on Friday

11th August - 156 days post transplant

Hi all.

I guess those of you who have not being following Mary on Facebook may have wondered what had happened to me?

A short synopsis of events from the 23rd of July is that I was taken into Addenbrookes in the very early hours of Tuesday 24th July with a raging temperature. Frankly I have little recollection as to what transpired over the next 2.5 weeks until I was released on Thursday 10th August. I was admitted to C10 the transplant ward and within a day or so transferred to Intermediate Dependency Area [IDA] as my temperature had spiked at 41.5 and my SATS showed 90% oxygen in the blood Here I was on Oxygen at 70% level and at a high rate of delivery. IDA is one stop before intensive care!!

I had 4 xrays, 2 CT scans and 2 ultra sounds plus arterial blood samples taken (ouch!!) as well as the normal twice daily blood tests

I had visits from Haematology, Heart, Chest, Infectious Diseases and Tropical Disease Consultants, all trying to figure out what was wrong.

Haematology said that on my paper results I ought to be in Intensive Care but physically I did not stack up against the figures.  We Welsh like to set puzzles! 

Eventually it was discovered that one of the rare side effects of one of my drugs was to screw up oxygen levels in the blood. Stopped the drug, put me on an intravenous alternative and SATS started to improve.

After further exhaustive tests no one could find out the root cause of the infection I had, except to say it was chest related. So as my fever had abated I was discharged home.

I feel as weak as water and as if I have been through a wringer backwards. Lost weight - great I don't think!!

Thanks to all friends and family who supported Mary and my children in prayer and practical ways over the last 2.5 weeks. Keep praying that I will make a full recovery and that this is the only blip I have.

I now have a week ahead of visits to Addenbrookes - more on this next week.

21st July - 135 days post transplant

Well today was just bloods, so not much to relate.
Feeling a bit off colour.
Blood pressure was  a bit on the low side.
As from today I will only post on a fortnightly basis after I have been to Addenbrookes.

14th July - 128 days post transplant

I forgot to post this over the weekend, so I hope no one is panicking that something may have happened to me. This weekend was the first that was nearly like a normal weekend. Got out and about a bit with Mary and managed two meals out at pubs. Time was chosen so that they were on the empty side.

There was no visit to Addenbrookes this Friday. Should have mentioned that last week!!! The situation is that I have bloods one week, then a free week, then the consultant the following week, free week and then bloods. This being the case I will now move the blog report to every fortnight after a visit to Addenbrookes.

Nausea has improved immensely as has the metallic taste in my mouth. It looks as if it will take a least a couple of months for my finger nails to sort themselves out and boy isn't that going to be a bundle of fun. They are painful at the moment and if you catch them on something .............!

My hair has definitely stopped falling out and is now in to the regrowing phase. The hair on my head, however, is taking its time over this!!!! Hair on other parts of my body id re-appearing much quicker.

I visit Addenbrookes this coming Friday for bloods and will provide an update after that.

7th July - 121 days post transplant

Well we are now a third of a year down the road since the Bone Marrow Transplant without any signs of rejection and getting stronger week on week. This week we had the results of my first bone marrow aspirate (BMA) I had a few weeks ago and it showed no signs of the disease. This is great news, though it does not mean that I am cured as we do have to wait for the results of two more BMAs, one in about 75 days time - the end of the second 100 days and another one a year down the road. We were seen by one of the senior haematologist and he was very positive and told me that I could now start to ease myself into leading a normal life.

It is highly likely that in about two to three weeks time I will start to have my childhood vaccinations again. This does underline that I have started a new life!!!

Stomach is feeling pretty good now. The problem I face at the moment is nausea when I look at certain foods. This could be caused my smell? I still have a sweet sickly, metallic taste in my mouth which increases as the day goes on and that does not help eating as the taste of the food can be awful.

My finger nails are giving me problems as they are painful. This is caused by the new nails growing behind the ones damaged by chemo.

Lost a little weight but this is likely to be due to the fact that I am doing more.

Fatigue is still causing a hassle, but it is not as bad as it was. Just need a rest in the afternoon, no longer in the morning.

30th June - 114 days post transplant

This week has had its ups and downs. I had a couple of days with a very bad stomach and felt extremely nauseaus. From Thursday I have been very good, except for the fact that I think my blood pressure may be on the low side. Seem to get a bit dizzy when I stand up. I am now down to one tacrominus in the morning and this change may the reason, but will sort it out next Friday when I see the consultant.

A first was acheieved on Friday. Chris and Sarah Broughton took me out to a pub in the country and I had a wonderful lunch of scambi, chips and peas without any feeling of nausea. It was just nice to be out in the community again, even though it was for a short time. This was repeated today when Tizzy, my daughter took me out for lunch. I pushed the boundaries further and had gammon, fried egg, chips, peas and a pinneable ring. Orange and lemonade was the chosen drink on both occassions - cannot cope with anything alcoholic! It does seem as if it is smell that is causing me to feel nauseaus as both meals did not have any overpowering smell, whereas a meal of mixed greens, potatoes and a meat with gravey does.

Still have the sweet metallic taste in my mouth, but this mainly a problem from late afternoon. It does seem to be going slowly.

The church house group that Nigel Greenslade belongs to at Brickhill Baptist Church came round Thursday evening and sorted my garden out for me. They did a marvelous job and stayed afterwards for refreshments - it was nice to have fellowship with them.

23rd June - 107 days post transplant

Well, no visit to Addenbrooks this week and I am in to my second 100 days stint. The week has been reasonable, with only a few days when my stomach really complained about having to accept food. Nausea has been a bit problematical and rather than bee a martyr I have succumbed to taking the anti-nausea pills which do seem to work to a large degree.

Still eating small meals and the weight is staying about the same. Hair is really starting to come back, though I guess it will be quite some time before I get a decent head of hair.

Skin is still flaking off. Maybe I should take shares in the company that makes E45 what with the amount I use every morning.

Made a couple of trips out to garden centres for coffee - got to start mixing with people, but this is fairly safe as there are not many people around on a school afternoon.

I know most of you are complaining about the weather, but I for one find it good as I am house bound the majority of the time!!

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.

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.