Transplant blog
Posted: 17 Dec 2009 15:58
We are posting here a series of email messages from a patient about to undergo a Bone Marrow Transplant.He has been keeping his friends and myself updated on progress.
I thought it may be hepful for other people as well.
The patient has given us permission to post these on the forum anonymously.
He has also emailed me some background information.
His exact MDS diagnosis is RCMD - Refractory Cytopenia with Multilineage Dysplasia.
A little history might make more sense of my transplant experience:
I was a reasonably healthy 56 year old having to bring in coal and chop wood for my old fashioned home heating systems when in mid-March 2009 I found it impossible to finish cleaning my admittedly filthy car. I was puzzled by my apparent sudden loss of fitness but not overly concerned at that point. Soon after I walked up a hill and found that I was having to stop every few yards to rest a short while and now I felt that this was really unusual. When I got where I was going I was variously told I looked awful or very grey and told that perhaps I should see a doctor. I managed to get an appointment for that same evening and the first tentative stab at a diagnosis of my problem was that I had some sort of circulation problem. I was booked for blood tests the following week and again attended my GP on April 1st for the results. He announced that my haemoglobin count was down at 8.5, my platelets around 55 and that the white blood cells were also showing some abnormalities though the counts were within normal ranges. April Fool!
My immediate reaction was blind panic - I had a blood cancer, probably leukemia and wouldn't see the summer out. I shocked my 4 siblings by ringing them all in the following days and telling them my only chance was a transplant and would they get tested to see if they could be a donor for me. I was swiftly referred to see a haematologist at my local hospital a week later and told that in all likelihood I had MDS but further tests, the bone marrow aspirate and trephine procedures, would confirm this. I was however immediately booked for a red blood transfusion the following day. I think I was given 2 units that first time.
My state of mind for the first month until the diagnosis of MDS was confirmed in early May was not good but during that time I completely came to terms with the idea that this might be it for me. I was already on regular red blood transfusions every three weeks but the frequency and quantity of blood I needed increased gradually until I was on 2 or 3 units every two weeks by the time I went in for the transplant in late October. My life was reduced to a cycle of relative fitness immediately after a transfusion followed only a few days later by an inevitable decline to extreme lethargy as the haemoglobin count fell off rapidly. I was lucky though that I had no infections during the whole time as the white cell counts were holding up so well. My platelet counts dropped fairly swiftly to the 25 where they stayed fairly steady for the next few months so I also avoided platelet transfusions.
In June I saw a second consultant who told me the mean survival term was three years and advised me to go home, take it easy and get a good relationship with my GP. It was only when I got home that I realised I was being written off. I decided that I wasn't going to take his advice but would fight to get a transplant. I have a ten year old daughter and it just wouldn't be fair for her to have dad whose health would gradually deteriorate. So when I saw a third consultant the following month I wasn't taking no for an answer and got a referral to Bristol Children's Hospital which has an Adult BMT Unit and enormous experience in this field. He was reluctant all the same and warned of the complications that could occur all of which, as he put it, started with a capital D.
During the summer my siblings were tested for compatibility and miraculously two of them were ten point matches for myself. They were also both negative for CMV, as was I, which was another box ticked. The omens seemed good. When I saw the consultant at Bristol I expected to have to persuade him but at the end of a lengthy 4 hour consultation he said he would put me forward for a 'mini' transplant, subject of course, to a barrage of tests for my own fitness.
The mini transplant involves what is called reduced intensity conditioning, the term for the chemotherapy that would knock out my own bone marrow prior to the transplant. The full intensity conditioning had an the upper age limit which I was quite a few years beyond. In fact I am only a few years short of the upper limit for reduced intensity conditioning. The implication was that it wouldn't necessarily knock out 100% of my bone marrow and left open the possibility that there might be a return of MDS at a later stage.
I sailed through all the tests for heart, circulation, lung function and so on despite having been a heavy smoker for 35 years until I gave up five years ago. I couldn't have asked for more. There was a false start in early October when I was booked to be admitted to Bristol and I was told in the early afternoon that I was to go in the next day and then received another call later that same afternoon to say that there was a hitch so it would have to be postponed.
In the last week of October I was fitted with a Hickman line which makes access to my blood stream for the innumerable blood tests and infusions I was to undergo. Although good enough for very careful living, a platelet level of 25 was not high enough for the surgeon and so I was given a transfusion immediately before the procedure. It was now that I discovered I was allergic to platelets and as I was wheeled back to the ward after the operation I saw in the mirror at the back of a lift that I had huge hives all over my face. They disappeared after a few hours but during my stay in hospital when I was given platelets on a number of occasions I was given a cocktail of pre-meds to avoid the problem.
When I got back from the hospital I received a phone call from Bristol to say that a bed had come available and could I be ready to be admitted two days later. Yes,definitely. My brother had already been harvested of the stem cells that were going to be infused into me. This had involved him in four days of injections of a growth drug in four sites around his waist to boost the production of stem cells by his bone marrow. So many of these are produced that they flood into the blood stream so that, with a line in both arms they can filter off the required stem cells and return the rest of the blood to him. He endured 4 hours of this on two consecutive days and produced a bumper crop. Enough remain after my transplant to be used at a later stage should that become necessary. These were cleaned and then were frozen in preparation for infusion into me on the day after the completion of my conditioning.
Which is where the emails to friends and family began.
Starts here:
9th Oct 2009
Hi again
The hospital just called to postpone the transplant for a couple of weeks. Just to double check a couple of things. False start....
I thought it may be hepful for other people as well.
The patient has given us permission to post these on the forum anonymously.
He has also emailed me some background information.
His exact MDS diagnosis is RCMD - Refractory Cytopenia with Multilineage Dysplasia.
A little history might make more sense of my transplant experience:
I was a reasonably healthy 56 year old having to bring in coal and chop wood for my old fashioned home heating systems when in mid-March 2009 I found it impossible to finish cleaning my admittedly filthy car. I was puzzled by my apparent sudden loss of fitness but not overly concerned at that point. Soon after I walked up a hill and found that I was having to stop every few yards to rest a short while and now I felt that this was really unusual. When I got where I was going I was variously told I looked awful or very grey and told that perhaps I should see a doctor. I managed to get an appointment for that same evening and the first tentative stab at a diagnosis of my problem was that I had some sort of circulation problem. I was booked for blood tests the following week and again attended my GP on April 1st for the results. He announced that my haemoglobin count was down at 8.5, my platelets around 55 and that the white blood cells were also showing some abnormalities though the counts were within normal ranges. April Fool!
My immediate reaction was blind panic - I had a blood cancer, probably leukemia and wouldn't see the summer out. I shocked my 4 siblings by ringing them all in the following days and telling them my only chance was a transplant and would they get tested to see if they could be a donor for me. I was swiftly referred to see a haematologist at my local hospital a week later and told that in all likelihood I had MDS but further tests, the bone marrow aspirate and trephine procedures, would confirm this. I was however immediately booked for a red blood transfusion the following day. I think I was given 2 units that first time.
My state of mind for the first month until the diagnosis of MDS was confirmed in early May was not good but during that time I completely came to terms with the idea that this might be it for me. I was already on regular red blood transfusions every three weeks but the frequency and quantity of blood I needed increased gradually until I was on 2 or 3 units every two weeks by the time I went in for the transplant in late October. My life was reduced to a cycle of relative fitness immediately after a transfusion followed only a few days later by an inevitable decline to extreme lethargy as the haemoglobin count fell off rapidly. I was lucky though that I had no infections during the whole time as the white cell counts were holding up so well. My platelet counts dropped fairly swiftly to the 25 where they stayed fairly steady for the next few months so I also avoided platelet transfusions.
In June I saw a second consultant who told me the mean survival term was three years and advised me to go home, take it easy and get a good relationship with my GP. It was only when I got home that I realised I was being written off. I decided that I wasn't going to take his advice but would fight to get a transplant. I have a ten year old daughter and it just wouldn't be fair for her to have dad whose health would gradually deteriorate. So when I saw a third consultant the following month I wasn't taking no for an answer and got a referral to Bristol Children's Hospital which has an Adult BMT Unit and enormous experience in this field. He was reluctant all the same and warned of the complications that could occur all of which, as he put it, started with a capital D.
During the summer my siblings were tested for compatibility and miraculously two of them were ten point matches for myself. They were also both negative for CMV, as was I, which was another box ticked. The omens seemed good. When I saw the consultant at Bristol I expected to have to persuade him but at the end of a lengthy 4 hour consultation he said he would put me forward for a 'mini' transplant, subject of course, to a barrage of tests for my own fitness.
The mini transplant involves what is called reduced intensity conditioning, the term for the chemotherapy that would knock out my own bone marrow prior to the transplant. The full intensity conditioning had an the upper age limit which I was quite a few years beyond. In fact I am only a few years short of the upper limit for reduced intensity conditioning. The implication was that it wouldn't necessarily knock out 100% of my bone marrow and left open the possibility that there might be a return of MDS at a later stage.
I sailed through all the tests for heart, circulation, lung function and so on despite having been a heavy smoker for 35 years until I gave up five years ago. I couldn't have asked for more. There was a false start in early October when I was booked to be admitted to Bristol and I was told in the early afternoon that I was to go in the next day and then received another call later that same afternoon to say that there was a hitch so it would have to be postponed.
In the last week of October I was fitted with a Hickman line which makes access to my blood stream for the innumerable blood tests and infusions I was to undergo. Although good enough for very careful living, a platelet level of 25 was not high enough for the surgeon and so I was given a transfusion immediately before the procedure. It was now that I discovered I was allergic to platelets and as I was wheeled back to the ward after the operation I saw in the mirror at the back of a lift that I had huge hives all over my face. They disappeared after a few hours but during my stay in hospital when I was given platelets on a number of occasions I was given a cocktail of pre-meds to avoid the problem.
When I got back from the hospital I received a phone call from Bristol to say that a bed had come available and could I be ready to be admitted two days later. Yes,definitely. My brother had already been harvested of the stem cells that were going to be infused into me. This had involved him in four days of injections of a growth drug in four sites around his waist to boost the production of stem cells by his bone marrow. So many of these are produced that they flood into the blood stream so that, with a line in both arms they can filter off the required stem cells and return the rest of the blood to him. He endured 4 hours of this on two consecutive days and produced a bumper crop. Enough remain after my transplant to be used at a later stage should that become necessary. These were cleaned and then were frozen in preparation for infusion into me on the day after the completion of my conditioning.
Which is where the emails to friends and family began.
Starts here:
9th Oct 2009
Hi again
The hospital just called to postpone the transplant for a couple of weeks. Just to double check a couple of things. False start....