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.