Archive for category Treatment

Day +101

That’s right. I’ve passed yet another milestone in my battle with the Funhouse Fever. It’s day +101 today. Apparently it’s a very big deal to pass the day +100 mark. I wish I can say it’s been uneventful, but no such luck. So far I’ve had a mild infection of the upper respiratory tract (no hospitalisation, thank goodness), a mild case of the GvHD (again, no hospitalisation required) and a reactivation of the CMV virus (alas, hospitalised).

While it’s not been as smooth as I would have liked, it’s not been rough as well. I spent most of my time at home and out and about when I can manage it. I worked from home (and enjoyed it too) and have been generally healthy and fine. I generally feel a lot better now than I did a month ago. I have more energy, my appetite is returning and I can walk for a lot longer without feeling out of breath. On a less positive note, I still feel cold most of the time. This makes taking a shower in winter a very unpleasant experience. Doesn’t help that the shower apparatus in the flat is a little temperamental.

To celebrate my 100th day post transplant, the family and I decided to have lunch at Singapore Gardens, a restaurant in the very chic St Johns Wood. But before that, we took a drive south west to Croydon. We are going to move to a nearby area in the new year, so it made sense to check it out before we moved. Overall it was a nice day out, besides a nappy disaster from Sophie which sparked a frantic hunt for a pair of baby tights in the stores.

We then drove to the restaurant (which was in the north west of London) and spent almost 1.5 hours in the car due to traffic. Luckily they kept the table for us and we had a very enjoyable meal. We started lunch very late so we had a very simple dinner, with a bottle of sparkling apple and ligonberry juice from Ikea. It was delicious by the way! 

So far so good I say, and although the first 100 days felt like an eternity, it’s a nice feeling now that it’s come and gone. The next milestone to look forward to will be day +200 and then 1 year post transplant. For now, I am looking really looking forward to an uneventful Christmas at home with the family. 🙂 It will be Sophie’s first and we have champagne and a roast planned, so it will be good. All I wish now is for an uneventful 99 days and an even more uneventful 265 days to the 1 year mark. 

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The NHS really sucks sometimes

One of my pet peeves is waiting for absolutely nothing at all. It’s a complete waste of time and shows a sheer and utter disregard for someone else’s time.

Basically I’ve been cleared to go home by the Haematology doctors. The levels of the CMV virus in my bloods have stabilised and are at a level where they’re comfortable with. But my blood results over the last 2 weeks have shown that my sodium levels are falling. Not alarmingly falling, but falling nonetheless. They’ve sent my blood and urine for analysis, and the results came back that I have SIADH. Basically something is making me pee too much and I am losing too much sodium that way.

So the doctors from the endocrine department want to see me before I leave the hospital to get to the bottom of this, and to deal with it. That’s the problem. It’s now 16:51 on Wednesday 7th Dec 2011. I’ve been waiting since 9:00 this morning. They’ve stopped my Ganciclovir infusion, and have given me pills instead. So technically, I can go and am discharged. Except for the fact that these blasted doctors from this department can’t seem to keep their appointments, and I have to stay in another day!

What a waste of time! I could have wrapped gifts, bought Christmas decorations, ran a lot of errands, got more work done; instead I am stuck here at the pleasure of these irresponsible doctors. It’s not like the nurses and doctors here haven’t tried to call them. They’ve called and paged them multiple times, but they just don’t bother to answer their pages. At least have to courtesy to pick up the phone and call if they’re busy. And if they can’t make it today, at least inform the patient so they can get on with their lives.

I hate the NHS sometimes. Some of them really think that they’re God’s gift to medicine. 

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Still here

I am still at the Funhouse, and still getting my twice a day drip of the anti viral drug Ganciclovir. It’s not all that bad though, as they let me go home between drips, so usually the first drip ends at about noon, and the 2nd drip starts at about 9pm so I am allowed to go home in between. I get to spend more time with the baby and all that, especially now that she’s squealing and laughing and trying to turn. Not a moment I want to miss.

Bad news is that they’ve had to give me a new canula, as the old one was getting a bit blocked. Canulas are only supposed to be in a patient for about 3 days, and mine was in for 5 so it was time they changed it.


They put it on my hand this time, not the best of places as Sophie is starting to grab things and this is something that she will try to grab. Not very nice if she pulls it out. Blood everywhere!

They also don’t take blood from the canula, and they also have to check my CMV levels everyday so they have to stick a needle into my arm every morning to take blood. I do have pretty decent veins but taking blood every day isn’t something the body deals with very well.



It’s day 6 now, and it’s also the 5th day of the anti-viral course. Hopefully the CMV levels will come down enough for them to send me home with a course of oral drugs instead. I can’t imagine being cooped up here for much longer.

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Guess where I am

Guess where I am now? Go on. Guess. Let me give you a hint.


That’s right. I’m back in the Funhouse. :(. I got a phone call earlier in the day and basically was told that the CMV virus in my body has suddenly become active and I need to come in for treatment immediately. The CMV virus is fairly common and is rarely dangerous to people with a normal immune system. For immuno-compromised people however, it can be quite deadly. This infection is also the most common post-transplant infection to get, and almost everyone gets it.

Still, doesn’t change the fact that it’s annoying to be in again, albeit for a much less sinister reason. As my Hickman line was taken out a few weeks ago, they also had to put a canula into my arm. Not the most pleasant of experiences, and I’ve had this done only a handful of times thanks to the Hickman.

It was nearly midnight when they finally got around to doing it, and the nurse performing the deed must have been on her feet the whole day cos it took her 2 tries to get the canula into a suitable vein. This is what it looks like.


So now I am in the hospital again, hopefully for not too long. The regular course of treatment for this infection is 5 days, depending on the levels of the virus of the blood after that. So hopefully I can be home by the start of next week. 

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Cabin Fever

These are the things that I’ve done over the last 3 weeks or so I’ve been home.


That’s right. Nothing. Besides sitting on the sofa, watching TV (thank goodness for the Rugby World Cup), sleeping and going on the internet. Can’t go out, can’t go to the shops, can’t go grab a coffee, can’t go grab a pizza, can’t do anything. On the advice of the doctors. And with 3 paranoid women at home, can’t argue with them.

I think I’m starting to get cabin fever. The only place I go to now is the hospital daycare. Grrr. The wife and I joke that it’s become our usual ‘date’ place now since I can’t go anywhere else. Grrr. The good news is that I’ve been in contact with work and I’ll start a couple of days a week from home (maybe more if I can manage) so I won’t be so bored.

It’s important to keep physically and mentally active when recovering from the transplant. It’s way too easy to just lie in bed and vegetate the entire 3 months away, but it won’t do anyone any good. While some people may find the physical part of it more difficult, particularly if they had a rough transplant, I think to at least keep a healthy mind when recovering is important as well. Physically, I think I’m still pretty weak (can’t open a bottle sometimes) but mentally I try to stay on top of things. Hence the decision to work and to do some of my other ‘projects’.

But so far, besides going a little bit crazy confined to the 600ish square feet of home, I can’t really complain. There’re no serious complications post transplant and I usually feel fine. My blood counts are OK, immunosuppressant levels are perfect and the infection seem to be going away (yes, after 2 weeks, it’s still there). So fingers crossed, the consultant will let me venture out to some shops at relatively quiet times. I need to go shopping for a christmas tree. 🙂 

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Another step

I’ve taken yet another step closer to a complete recovery. Well, in my mind anyway. Since I was diagnosed, nothing really hit me on the head that I have Leukemia more than the Hickman line. Even when Dr MacDonald (the consultant who broke the news to us that fateful Christmas Eve) told me in no uncertain terms that I had it, a small part of me refused to believe it.

Then they put in the Hickman line. More than anything, it reminded me every day that I have this dreaded disease. Even when I was home for 3 months, waiting to be admitted for my transplant, and things were as normal as can be, it reminded me every day that I still had to deal with it and the future is far from certain.

However, I’m glad to say, it’s no more. Yes, the Hickman line is finally out. 🙂

The consultant reckoned that it won’t really serve any purpose now that the transplant is completed, and the maintenance and risk of infection through the line is too great to counter the convenience. So he had it removed. Or as he put it, “we just pull it out”. And yes, it really was as simple as that. Mostly.

In cases where the line’s been in for less than 3 months, it really was a case of tugging it and it came out. But my line has been in since December 2010 and so much tissue has grown around the line since then that they needed to make in incision where my collar bone is to get one of the ‘clamps’ out. After much tugging and pulling, they finally got it out!


This is what it looks like outside the body. The bit in the doctor’s left hand should be fairly familiar to those who have seen it. That’s the bit that sits outside the body. The bit in the doctor’s right hand goes into my chest, up the collarbone and into a blood vessel near the heart. Cool eh?

So yes, it’s out now. The only disadvantage I can see is that I need to be stabbed every time I go to daycare to have my bloods taken. But I think that’s a small price to pay. 🙂 

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Moulting

I feel like a moulting lizard. Or snake. Or insert whatever appropriate reptile here. It’s been about a week since I started developing a lumpy rash on my hands due to GvHD. On the advice of the doctors, I’ve been applying a steroid cream to the affected areas, and now the skin has hardened and dried up.



So now my hands look like a moulting reptile. Aesthetically it’s quite challenging but more importantly, it’s quite disconcerting to be leaving bits of skin everywhere, like on the bed, in the coffee, in my breakfast, etc. Plus the wife keeps wanting to peel it off! Some sort of fetish!

Since the rash is also on some other parts of my body, it’s also going to be quite challenging to have them peeling off like that. Luckily most of it are in areas that are normally covered by clothing so it’s not going to be visible most of the time. It’s a small price to pay I reckon, but it’s just so annoying. 

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