Category: Transplant Journey

Day +19, New Year’s Day! Back in the hospital after spending a lovely night with the family and seeing the New Year at home. Amal, Rohan & Shereen decided to miss out on their New Year’s eve parties and spend the night with their parents! We played the Logo board game and then waited for the New Year.

Yesterday my blood counts were; wcc at 4.3 (range: 3.5-11), neuts 3.3 (range: 2-8), plts 181 (range: 150-400) & hb 10.1 (range: 13-17). Today they are at: wcc at 3.9 (range: 3.5-11), neuts 2.9 (range: 2-8), plts 172 (range: 150-400) & hb 9.2 (range: 13-17). We are close to hitting the normal range on all fronts and this is an amazing result. The creatinine levels were at 126 yesterday and it has come down to 104 today. The extra fluids may have helped.

Lesley-Ann went back to London on Saturday after spending the month with us. The good news is that I got to spend Friday night at home with the entire family and we got the chance to play our family board game. This is a Christmas tradition and in recent years Lesley-Ann has come home with a new board game. Last year it was Articulate, this year the Logo Board Game. We will miss Lesley-Ann, but she will be back home again in two weeks time.

Happy New Year! My wish for us in 2012 is:

That the single, most significant dimension of life is our relationship with God.

That we treasure our loved ones and let them know how dear they are to us.

That we remember relationships are what count above all else – more than work or money, or all the material things we spend so much time tending.

That we keep our sense of humor when things don’t go the way we want.

That we find adventure in each new day and marvel at the wonders of creation which constantly present themselves to us.

That we never give up on ourselves when others turn away or do not understand.

That we are attentive to the health of our body, mind and spirit.

That we take risks and accept the growth-full challenges that come to us.

That we draw on our inner strength and resiliency when we are in need.

That we carry peace within ourselves, allowing it to slip into the hearts of others so our world becomes a place where violence, division, and hate are reduced.

That we never forget the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.

That’s all for now folks!

Day +17, today is exactly four weeks since I was admitted into hospital, and here I am writing my blog post from home. Who would have thought that I will be home before the New Year? My blood counts continue to rise; wcc now at 3.4 (range: 3.5-11), neuts 2.5 (range: 2-8), plts 175 (range: 150-400) & hb 10.7 (range: 13-17). We are close to hitting the normal range on all fronts and this is an amazing result. However, because I am on cyclosporin, an immune suppression drug, I will still be prone to infection. Cyclosporin is there to prevent the Graft-versus-host disease.

Spent last night in a ward with two other female patients. One patient was very confused (I only found this out later) and kept calling people on her mobile phone at all hours of the night. Moving from a lovely isolated room with its own shower and toilet into an open ward was a shock to the system. The good news is that I get to sleep at home tonight and hopefully they will discharge me tomorrow. The only spanner in the works is that my creatinine levels are high. This is a side effect of the drugs and I am probably not drinking enough water to flush this out of the system.

I called my post, glass half empty. This is because I may be a ‘glass half empty’ man. In spite of talking about ‘celebrate success’ I was not happy about leaving my cozy secure environment into an open ward. Yesterday was a day to celebrate. I was at home for dinner after over 3 weeks in an isolated room and Sri Lanka won a test match in South Africa for the first time. We had some family time together playing a board game. However, moving out of the room managed to dampen the spirits. Talk is cheap they say and how true this was in my case. Instead of celebrating success, I was focusing on one minor setback. Instead of the glass being three quarters full, it was half empty for me! In hindsight, moving out of my secure room was good. It would have been difficult to come home directly from my secure environment. Lesson learnt, ‘don’t let a small set back stop celebrating success’.

We are playing scrabble this evening and it looks like I will beat our local scrabble champion Amal today! But just like a good test match, the tables can change at any time.

That’s all for now folks!

Day +16. surprise, surprise, I am writing this blog at home, while playing a board game (The Logo Board Game) with the family. It is difficult to concentrate, but I’ll give a short update. The blood counts continue to go up. The white cell count (wcc) is at 2.1, the neutrophils are 1.4, the platelets are 131 and the hemoglobin is at 10.6.

They let me out for a few hours so that I can come home for dinner. Had a very nice curry and I will be back in the hospital later on tonight. The only bit of bad news is that they moved me out of my room into a ward with 4 other patients. They will probably let me out again tomorrow and then spend Saturday night at home. Expect to be back home on Sunday or Monday. The doctor told me this morning that this is one battle won, but that there is still a long road ahead of me.  Please continue to keep me in your prayers. Thank you for your love, support and prayers.I will still be in semi-isolation for a few months while at home, with regular visits to the hospital.

There was a minor crisis this morning when I ran out of credit and was unable to connect to the WiFi network. As usual my friend Denis came to the rescue and went out and topped up the ‘3’ sim card. I was then able to watch the Sri Lanka South Africa cricket match. For the first time in our cricketing history, we beat South Africa in a test match in South Africa. All in all another great day in the office for me!

I will leave my computer at home tonight and will not be back on the blog until the New Year. Wish you all a very Happy New Year! That’s all for now until 2012 folks!

Day +15. Another good day in the office! The blood counts continue to go up. The white cell count (wcc) is at 1.4, the neutrophils are 0.9, the platelets are 99 and the hemoglobin is at 10. They are talking about my going home. STOP, it is not even 4 weeks as yet. I was meant to be here for 6 weeks.

I met another Haematology Consultant today. I think there are 6 haematology consultants. I have a white board in my room where I track the blood counts. Amal had written down our goal of reaching 0.5 in my neutrophil count. Since meeting that goal he had put down some new goals. One is to avoid infections and the second is to avoid the Graft-versus-host-disease (GvHd). The consultant rubbed this out saying that you really can’t avoid GvHd as it is outside my control. I had to smile as not everything has to be within my control. In fact, I did not have anything under my control. The children understand this and this is all that matters!

I went outside my room for the first time in weeks. I walked to the shop with Pat this afternoon. My friend Bernard sent me a text this morning to say that while this is a small step, it has a massive significance. How true!

This morning, I spent a few minutes writing an email to the children on ‘preparing for my coming home’. I will share it with you in a future post. The first 100 days are crucial, but we would need to find a balance where everyone else can lead a normal life and put up with a few inconveniences, while I am at home.

The dietician, Grainne, came to see me today to talk about food hygiene when I go home (you see they are seriously looking at sending me home soon!). While I am on the immune suppression drug, cyclosprorin (This will probably be for about 3-6 months) it is very easy to end up in hospital with food poisoning. The focus is on food hygiene and not on a very healthy diet. No raw foods (I’ll miss my sushi), no food from salad bars (only packed slices of ham), no takeaways, no nuts (I’ll miss the nuts), only boiled water and the list goes on. Anyway, this is not a problem as Pat is a good cook and I will get to eat my curries.

The only problem with the dietician’s visit was that I was in the middle of watching the cricket match. SL lost two crucial wickets during this time. However, we are doing well in the cricket match and I think we should win this game. An amazing turn around from the previous match when we were well and truly beaten. This morning Kumar Sangakkara, a Sri Lankan who is now at the top of the world’s batting ranking, was on 3. He has had a very poor series so far, unable to score any runs. Something told me that today was his day and that he will go on and get a century. Well, I called Pat to get my Credit Card details and put a bet on this and made a very healthy profit as Kumar went on to score a century! It is a good thing that Pat does not read this blog as she will stop giving me my credit card details if she knows what I am up to in hospital!

Thank you for all your comments, good wishes and prayers. Looking forward to more cricket tomorrow! Though I will refrain from gambling and just enjoy the match. That’s all for now folks!

Day +14. Great news today. Professor Paul Browne came in today with his hand outstretched to congratulate me. Yes, the goal of getting the neutrophil count up to 0.5 was achieved. It is way ahead of schedule. He was more pleased to see the platelets up above 50, which means that the ‘new workers’ have got the factory working and starting to produce the new blood cells. The white cell count (wcc) is at 0.9 and they are talking about my going home soon. I had to say, wait a minute, we have only just crossed the half way mark, I am not ready to leave this ‘safe’ environment. It was an emotional day to hear the good news. Strange to say, when the time comes, it will be difficult to leave the hospital. It is difficult to express what I mean by this, except to say that while the picture I painted may have been a bleak one, I was never lonely depressed or sad at any time. The only negative emotion was one of fear, which is also the one that makes me want to stay here for as long as I can. I am in a public hospital as a public patient and the treatment and care here is second to none.

The next two hurdles to overcome are to avoid infections and the GvHd (Graft versus Host disease). Anyway, one step at a time and we will have to deal with it as it comes. It is time to start preparing for my return home.

The Sri Lankan cricket team did very well today getting the South Africans all out for just 168 runs. It was good news all around. I am looking forward to the match tomorrow.

That’s all for now folks!