Archive for category Transplant
It’s been a really long time since I last updated this blog. It was in February. I’ve even had to check my blog for that! Lots and lots have been happening since February. Some good and some bad.
This is a bit of a hit and miss. I’ve been fighting a persistent cold (Rhino virus) since December 2011. And it’s just going away. Also, since the CMV virus has reactivated in my body, I’ve been on Valganciclovir and it’s proving to be murder on my blood count. I’ve found myself neutropenic many many times, and needing GCSF jabs almost daily to keep my blood counts up.
I’ve also been warded 2 times in the last 4 weeks for infection, the last one a chest infection that took over nearly 1/2 of my left lung!! Not very nice. Thankfully it’s all clear now and even the cold seems to be retreating a little.
Sophie’s just turned 9 months old. She’s crawling and learning to walk (every parent’s nightmare). She’s also really curious and very very observant. We’re taking a long deserved holiday back to Asia to see the rest of the family in a few days and everyone’s really looking forward to meeting her.
The wife’s hanging in there, pushing herself to the limits everyday to make sure that Sophie gets the best that she can get. So a typical day in the life of the wife is:
07:00 – Wake up and breast feed Sophie
09:00 – Wake up and take over breakfast feeding duties from me
10:00 – Dress Sophie and take her to playgroup
11:30 – Lunchtime (Sophie’s)
12:30 – The wife inhales her lunch if she’s lucky.
14:30 – Monkey Music or a walk in the park, if the weather is good.
15:00 – Breastfeed Sophie
16:00 – Back home and Mummy play time with Sophie
17:30 – Dinner time (Sophie’s)
18:15 – Sophie’s bath time
20:00 – Dinner (ours)
23:00 – Bed time
A pretty packed day with plenty of stimulation and activities for the little one, which I’m sure is one of the reasons why she’s so observant and curious. But then the wife is exhausted by the end of the day.
Work’s been a bit of a disaster to be honest. While they’ve been very good to me while I was undergoing treatment, now that I am back full time (albeit 3 days in the office and 2 days from home), I still can’t commit the time and energy that I want to due to the fact that I can only travel off peak and need to take time off for clinic visits.
So they can’t assign big, juicy projects to me; the very thing I was hired to do. It’s immensely frustrating to see projects like these assigned to someone else.
It’s also been a long hard slog since I’ve been diagnosed (in more ways than one), and the wife and I have been really looking forward to this break for a very very very long time. So while everyone fawns over the little one, we’re going to have a good, nice, long break. 🙂
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.
It seems that my battle with GvHD isn’t over yet. I’ve developed yet more rashes on my forearms and face. Having had it before, I was able to recognise it quickly and apply the necessary creams and steroids to the affected areas. Hopefully it won’t spread like it did the last time. The rashes seems fairly mild in comparison, but it always starts off this way before ballooning into something looking red and angry.
The rashes on my face seem to have been there for a while though, as they’re turning brown. I needed to get a different cream for the face, as the one I have for the rest of the body is too strong to be used on the face. Oops. The doctors think it’s not something they will be worried about too much, unless it spreads further and gets angrier, or unless it comes with nausea, vomiting and diarrhoea. But the one thing good about GvHD is that patients with GvHD, acute or chronic, has a much lower chance of the Leukemia returning. And that’s very good news indeed.
Also since it’s the flu season here in the UK, I’ve asked the doctors if I should be taking the flu jab as a precaution. Basically, there’s no evidence either way for the jab. It certainly does no harm, and it can do good. Generally it’s recommended that patients DO go for a flu jab during flu season but there are complications as well. As my immune system is still recovering and is being intentionally suppressed, there may not be enough of the cells to react with the flu jab to develop the necessary antibodies. If that’s the case, the jab is wasted. It’s generally agreed, however, that everyone around me should be getting the jab. Which they have done.
It’s nearly day +60 and things seem to be going ok. I still feel a little listless due to the lack of energy, but bloods are recovering well. The random fatigue seem to be getting less and less frequent, and I can concentrate better when I am working, which is always encouraging. I can also walk further and longer (even with a 6-kg baby strapped to my chest :)) so things seem to be improving. But like the doctor says, in terms of recovery, it’s very early days yet. Full recovery generally takes years so 60 days is nothing from that point of view. The important thing is that I should be vigilant for any additional GvHD symptoms and to avoid falling sick, if possible. Also to keep exercising and to stay active.
I hope to be able to travel to work soon, just a day a week, and at off peak times. It gives me something else to do and all that shoving and pushing people on the tube is also a form of exercise. But we’ll see what the doctor says.
My meds have been reduced! Yay! Well, actually only one medication. I still take the rest at the normal dosage but well, it’s a small step to more and more meds reduction.
l used to take 8g (16 500mg pills) of Valacyclovir every day and it became a massive struggle to not only swallow 4 pills at a time, but also to replenish my supplies. 1 box of Valacyclovir has 42 pills, and at 16 pills a day, it lasts just over 2 days. So every time I get my supplies replenished, I come home with literally a sack of pills. I shudder to think how much it costs the NHS every fortnight. Apparently Valacyclovir is a very expensive anti viral drug. Add the 2 immunosuppressants and other drugs, all I can say is thank goodness for the NHS.
So now, instead of taking 16 pills a day, I take 2 pills a day. 😀 Massive reduction but it comes with some risk. There’s a chance that some of the dormant viruses in my body will start becoming less dormant and start infecting me. The biggest risk in my case will be the CMV virus. I’ve tested positive for the virus, and so has my donor. Normally the virus stays dormant and doesn’t bother the host but sometimes it starts becoming a problem and that’s when strong anti viral drugs are needed.
The high dose Valacyclovir helps keep the virus in check, and the longer I stay on the high dose, the less the virus will have a chance to become a problem. But I can’t stay on the high dose forever so it’s a risk that I have to take eventually. So the next step here is a reduction in the visits to the hospital. It’s going to be a major step indeed when that happens. And I look forward to it.
I’ve reached a mini milestone today, it’s 50 days since my stem cell transplant. It’s nothing more than 1/2 of the 100 days post transplant that’s the most risky for patients, and the doctor reckons that it’s a mini milestone. He thinks that I am doing very well, the GvHD rash is mainly gone, and besides the dry skin and itch that comes with it, doesn’t look like there’s more on the way.
There’s always the risk that it can relapse, but at the moment, it seems like it’s under control. The wife and I also got some opinions about some lifestyle questions that we have about my recovery, especially since it’s 50 days post transplant; like if I can head out to the shops when it’s not busy or if I should exercise, etc. Bottom line is that there’s no evidence to support anything that they recommend I do. Most of the infections that may afflict patients come from within their bodies anyway, and sitting at home doesn’t decrease that risk.
He did say that it’s good to exercise and go for brisk walks to build up the muscle mass that I lost when I was warded during the transplant. He even suggested going for runs and to work out more. Going out is also OK, but it’s best to avoid really crowded places with poor ventilation. He even suggested that I go back to work (which I have done) and also said that a short ride on the underground is OK, provided it’s during off peak hours.
This is certainly encouraging as what he’s saying is much less restrictive than what I was led to believe a few weeks ago. Basically I can live a semi normal life, with a few precautions. Mostly common sense stuff, like what you would do with a newborn baby. So we have to treat me like a newborn and what we won’t do with a newborn, we shouldn’t do with me.
With that in mind, the wife and I are planning some activities for everyone over the next few months, mainly outdoor activities and perhaps a visit to stores like Ikea on a weekday. Also in addition to working 2 days from home, I plan to work from the office one day a week in December, moving to 2 days a week in the office come the new year. Gives me something to do.
Well, things seem to be moving in the right direction. The GvHD is gone, and hopefully won’t return, blood counts look OK, energy levels are coming back up and my appetite is coming back. Hopefully this Christmas will be more joyful that the previous one we had. 🙂
One would think that having gone through 3 rounds of intensive chemotherapy, one round of radiotherapy and pre-transplant chemotherapy, I would be rid of pill popping for a while. Nothing is further from the truth. I reckon I am taking more pills now than I ever was.
The rubbery looking white and grey pills are immunosuppressants (cyclosporine), and I take that 2 times a day; the pills with the M500 on them are also immunosuppressants (myfenax), also 2 times a day. The large white pills are anti viral pills (Valacyclovir) and I take 4 pills (yes, 4) 4 times a day. The white capsule is the Lanzoprozol, to protect the stomach lining, once a day; the pink pill is Levofloxacin, an anti bacterial pill for my infection, twice a day and the small orange pill is Lamivudine. This one’s for hepatitis.
I suppose I should be thankful. I’ve been told that some people take even more pills. This is, apparently, fairly standard. The consultant has hinted that I will be able to reduce the pills soon, so it won’t be such a chore to remember what to take when.
The thing about taking meds is that they run out, and I have to get another prescription from the doctor and head to the pharmacy to pick them up. Normally in other countries, one would have to pay quite a lot for the pills but here in the UK, under the NHS, you’d only have to pay £7.40 per prescription. But it still adds up. Luckily for me, I have a concession from the NHS (all cancer sufferers do) and I won’t have to pay for prescribed meds for the next 5 years.
I really can’t imagine having this condition in Singapore or Australia where you’d have to pay full price or close to full price for prescription medication. That alone would be enough to drive someone to bankruptcy! I reckon I’ve siphoned enough out of the system to not complain about paying taxes ever again! 🙂
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. 🙂