Transplant Journey

The First 100 Days

Day +11, Christmas eve. Had a good night’s sleep for a change. The pillow case is covered with hair, as I am loosing my hair.  This is another side effect of the chemotherapy. There is some good news today. My white cell count is going up. It is at 0.2. The donor cells have started its work. Thank you Mahesh! The mouth is sore, but will have to put up with this for a few more days. Today, I will take my pain killers early. They might attached a morphine pump if it gets too painful during the day. The idea is to pump small amounts of morphine to control the pain throughout the day. Martha was my care nurse again last night, this has helped to brighten up my day. Isn’t it amazing the effect the first person you meet in the morning can have on your entire day? The nursing staff here are excellent. Have you seen the movie, Patch Adams with Robin Williams? It was an excellent movie based on a true story. Patch’s views on the nursing staff in a hospital are accurate.

I was going to write about the alternative treatments today, but have changed my mind to talk about the First 100 Days.

Whenever there is a regime change we tend to monitor the first 100 days. For example, the first 100 days in office , for a new President. In the INSEAD MBA course, one of the most popular modules, is the first 100 days simulation game. It is a game that acts out the first 100 days of a company takeover (acquisition). The winning team is the one, best able to deal with the crisis and find a way for a smooth transition from the old guard to the new guard. I’ve had the opportunity of being an actor in this game on several occasions and it has been fun. The game is over for me and I am in the ‘real world’, a player in a regime change during the first 100 days.

The regime change is when the donor stem cells will take over my blood production. The production factory is in my bone marrow and hopefully the factory equipment is still all in working order. The blanket bombing raid (chemotherapy) has killed off most of the factory workers (old stem cells). The old regime lost its way, producing quantities of defective cells instead of good quality cells. A regime change is taking place and the new donor cells will start the production. However, this transition is never smooth. The next potential hurdle is a disease called Graft-versus-host disease.

Graft-versus-host disease (GVHD) is a common complication after a stem cell transplant from another person. Immune cells (white blood cells) in the donated stem cells (the graft) recognize the recipient (the host) as “foreign”. The transplanted immune cells then attack the host’s body cells. Your organs, seen as ‘foreign’ by the new regime may come under fire and your kidneys and liver may be affected. This is the reverse of what happens when you get an organ transplant. In the case of a new organ, it is your system that detects this foreign objet and looks to reject it. In my case, the foreign cells take over my body and wants to reject my own healthy organs, as they see these as foreign. I am on a daily dose of Clorosporin that is meant to be the mediator to prevent this, though you do want the donor cells to detect as ‘foreign’ the old regime’s leukaemia cells and destroy them. Therefore it is a balance and this is what the medical team will monitor during the first 100 days.

During this period, I will avoid contact with children to help prevent picking up any of the childhood diseases such as Chicken Pox as most of this immunity may have been wiped out as well. Anyone having any contact with winter flus and other sicknesses should also avoid coming to see me.

That’s all for now folks! Tomorrow is Christmas. Isn’t it exciting. Hope you have a great day with your families and we will talk again soon.

2 replies on “The First 100 Days”

Raomal, sean showed me your blog today. It brought up a lot of memories and also made me take stock of living in the moment and appreciating the spirit of Christmas rather than the material presents and stresses of making everyone happy and resenting the pressure it all entails. When I was 4years old I got rheumatic fever and was in bed constantly for next two years as exercise could result in heart damage.
My world was a bed and I used to draw endlessly- had an aunt a nun and she used to give me old christmas cards and in those days you could open up the card so it was like A3 sheet. I didn’t have brothers or sisters but I think I gained alot as I used to listen to radio and had a record player and stories of Peter Rabbit which I can still recite. I had my parents and grandpatents living with us (grandad had a stroke and was brought to dublin and lived with us from when I was 2- 6), I used to lie in bed and had a whole fantasy world and surrounded with love. I was doused in holy water and all sorts of relics were borrowed. When I emerged at aged 6 and went to the shops I was a rarity – this dublin child with pronounced Kerry accent.
Your writings have reminded me of how I have left all the material goals in life swamp me and my relationship with Jesus as been based on ‘doing’ rather than communicating and where I forgot who is the ‘Boss’ and should have remembered the saying ‘Let Go, Let God’. This year has been very tough yet I think Jesus is closer than ever when we are at our lowest. He is present in our families, friends, medical staff and most importantly in our hearts. We will pray that God is guiding all the cells to do what they should be doing and you, Pat and the family have been in our thoughts and prayers this advent. Hope the nurses are pretty as well as nice.
God Bless, Brenda

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