Tuesday, 22 July 2014
One year ago today I completed a haemotopoetic stem cell transplant (HSCT) under the care of Dr Richard Burt and his wonderful team in Chicago's Northwestern Memorial Hospital with the hope of being cured of CIDP.
Cure is a word that most doctors are reluctant to use, and I have the feeling that they would feel more comfortable describing any recovery as a remission.
So the key question is how would you measure a recovery, and if so, have I recovered?
As the key features of my experience of CIDP were fatigue and weakness, a fair assessment of recovery would be based on the change in these symptoms and the change in treatment to control these symptoms.
Before my decision to apply for HSCT, I suffered from poor balance, extreme weakness and extremely low stamina. My trips to the gym were usually extremely disappointing as I was unable to lift ANY weight without assistance, and even my workout on the cardio apparatus was extremely slow and labourius. I was required to take a multitude of tablets each morning just to maintain my poor and weakening condition. Whilst eating, I would sometimes have difficulty in swallowing. My voice became very strained and quiet, such that people could not hear what I was saying. By bedtime, I would lie down and experience intense tingling which would take time to subside, although they never really went away. I was dependent on people around me to get through each day.
An accident at home in July 2012 resulted in a broken leg, and left me in a plaster cast for three months. For anyone who has had a broken a limb, they will know that the muscle atrophy takes ages to recover. But for me, with existing nerve and muscle issues, it pushed me down a 'slippery slope'. By March 2013, I believe I was at a low point, both physically and mentally.
But this low point lead me to 'dig deep', and I found the strength to seek out help in the guise of Dr Burt.
The rest of the journey is history, but I am digressing.
So what has been the change in my fatigue, weakness and ongoing treatment?
A normal day would result in me feeling exhausted by early to mid afternoon. I no longer have this dip in energy levels, partly due to the fact that I am now sleeping properly without the continual background tingling throughout my body.
I used to be extremely weak, and would have difficulty carrying anything but the lightest of objects. I am now going to the gym three or four times a week, doing a cardio workout on the treadmill, bike and cross trainer for 45 minutes to an hour at a reasonable intensity. In addition to that I have been working on my strength lifting weights and increasing the weight incrementally every 2 to 3 weeks. I am currently shoulder pressing 17.5kg and chest pressing 25kg, which may not appear very much, but a great deal more than my starting point of 0kg, and I have every intention of continuing to push my boundaries.
The clearest benchmark of my recovery is the reduction of my 'symptom control' medication intake to NIL without any ill effects.
What has been the effect of all this on my day-to-day life?
In March 2014, I was requested to return to Chicago for an annual follow-up. If you bear in mind that I have been unable to travel on my own for more than 10 years, this was quite a scary prospect. But I made the six-day trip to Chicago, to Akron[ Ohio] and back to Chicago for my follow-up before returning to London. I still remember the moment the plane touched down at Heathrow on day six, and I thought to myself "I've done it". It was amazing to feel independent again.
I am increasingly mobile, without the burden of fatigue that would inevitably hit me at some point in the day.
I have much improved balance and have started to share my wife's love of dancing. I have even danced salsa with her (and I do mean dance in the loosest sense of the word).
I can play with my kids, and have successfully tried bike riding and badminton among other activities (even if the bike ride did end up with me crashing into a bush as my hands weren't strong enough to pull brakes)
The weight gain from use of the steroids is disappearing, and I no longer have the barrel shaped mid-riff that was developing (although this may cause a problem with my application to play Santa again this year at the local supermarket).
So, back to the original question! Am I cured? Am I in remission? Have I recovered?
To say I am cured or in remission requires an assessment of the degree of recovery.
If 'recovered' means the ability to do things that I could have done if I hadn't suffered CIDP, then I have NOT recovered. But if you ask if I feel whether I am on the 'Path of Recovery'? "Hell, yessssss!!".
My haematopoetic stem cell transplant has given me a second chance at a life that I thought was slipping away, and I am grabbing that life with both hands.
Wednesday, 5 February 2014
I have a love-hate relationship with January!!
On the one hand it represents a new start to the year, where all your dreams are possible, (and my eldest daughter was born in January).
But on the other hand, it is tax return season for me, and the weather is so so grim....
In the aftermath of the Christmas and New Year festivities, I had found myself extremely fatigued. Despite the grimness of the January weather, I had made strict efforts to resume my exercise regime that had worked so well during the previous two months.
The bathroom scales were showing numbers that I was not happy about, and the indulgences of December had obviously taken their toll.
But as well as being tax return season, it was also the season of flu and cold, and both my daughters returned from school at various times during the month with sneezes and sniffles.
I was keen to avoid catching anything, but my careful plans for gym work were blown away with flu-like symptoms. My fears were exaggerated though, as I recovered within a day or two and set myself new targets for my cardio and weight training workout.
As with the setting of all new targets, it is necessary to evaluate where you are now, and where you want to be. And so I looked around at the other people at the gym ...
There were thin people, fat people, old people, young people, extremely fit people, and so I wondered where I fitted into this spectrum.
My self-evaluation did not have a very pleasing result, because I was still in the bottom end of the spectrum of 'normal' people, despite the great leaps I have made in my recovery.
This saddened me a great deal, as I felt my perceived improvement was not so great after all. I still had a long way to go before I could lead a 'normal' life.
So I decided to look over some pictures of the last nine months, from the time I was accepted for evaluation at Northwestern to the present day. On reflection, I may have been overly critical of myself, and I have attached some pictures showing the metamorphosis from a straight haired, steroid pumped CIDP sufferer to a curly haired, bearded, steroid-free HSCT 'graduate'.
|Early June 2013|
|Late June 2013|
|Early July 2013|
|Mid July 2013|
|Late July 2013|
My hair is growing well now, but the 'chemo curls' are still very dominant, making it very difficult to manage. I began to reminisce about my bald head as I went through the HSCT process, and looked with jealousy at all the hairless, shiny headed men around me.
And so I began to do some research on the bald look and the pros/cons of it.
The Evolution of Baldness
Research suggests that 'man' became less hairy after the discovery of fire. The 'Lesser-Haired' caveman was far less flammable than his hairy counterpart, and so through survival of the fittest, 'Lesser-Haired' held a genetic advantage.
Baldness also conferred aerodynamic advantages to 'Lesser-Haired', as he could swim faster, chase prey and capture mates.
In tribal warfare situations, baldness was used to the tribes advantage as a well-polished bald male head would be used to blind enemies and predators.
Modern Day Baldness
Although the genetic advantages described above are largely redundant now, in modern day living, baldness has many advantages for the human male:
Time and money
- no hair combing in the morning. - no bedhead, no Jedward head, no Something-About-Mary head
- save money on shampoo and hair products
- no hair dryer required, saving electricity
- less time needed in the shower, which uses less water and is environmentally friendly
- no requirement for a barber, saving money
- it's comfortable and never gets tangled
- a good place to jot notes if you don't have a pad handy
- your hair is always 'perfect'
- people can locate you in a crowd if you make it nice and shiny
- strangers will approach you, and rub you for good luck
- If a girl asks you for a mirror, you just give the top of your head a good rub and bend over. The view is amazing ....
- facial hair can make you look like a badass (or an axe-murderer, if that's your thing)
- attend fancy-dress parties as a bowling ball
- when aliens arrive, they will better relate to you
Headwear and temperature regulation
- when it's hot, baldness is the best way to lose heat from your head
- when it's cold, you can put on a hat
- no hat-head when you remove your hat
Bald really is beautiful these days and during my period of baldness, I found it to be a personally liberating experience, such that each morning I contemplate shaving my head.
My wife has threatened violence to me if I do so, but this highlights another advantage of the bald head in that any head wound can be easily attended to ......
Thursday, 2 January 2014
My hair has regrown curly. I have had straight hair my entire life, so this was initially a bit of a shock but it is now a novelty as I enjoy the look on friends' faces as they see me for the first time since HSCT.
As I have never had curly hair before, knowing how to care for it and style it properly is proving very problematic. A quick Internet search suggested that the curly regrowth was probably a phenomenon known as 'chemo curl'. Chemo curl affects some people who have undergone chemotherapy due to the hair growing cells being affected by the chemo, and resulting in different hair texture and sometimes different colour. The curls typically last for between 6 to 12 months after treatment.
We visited a friend recently who was concerned that the chemo curls may be the result of mistransplanted stem cells from a black man. If this was the case, I was not too bothered as friends have commented that I now have great moves on the dance floor (more on this later), as even when I was well my dancing was not a pretty sight. As well as that, I have heard rumours that black men are very well endowed .. So if the mistransplant theory is correct, there's hope yet ;-)
So other than the curliness of my hair, what has happened since my last update?
The gym regime has continued. Vineetha and the girls head off to school and work at 7:30am, whilst I trek to the gym. 30 minutes on the treadmill and then another 45 minutes on the weights machines usually tires me out. I return home and consume a second breakfast before doing an hour or so of tax or accounting work for my clients. Then it's onto the cross trainer for a 30 minute session. For someone who was formerly exercise-shy, I'm now loving it because I have regained the ability to do things that CIDP had robbed from me ... and that's a great feeling!
Then Christmas arrived and along with all the festivities, we found an App called ElfYourself, where you superimpose a picture of yourself onto a dancing elf. It's all very comical, until one evening I decided I would do the elf dance for real. If you're brave enough, click on the link below:
It's not very pretty, but for a man who suffered from poor balance and could barely walk without a crutch 5 months ago, I felt an enormous sense of achievement.
My dear wife has stood by me through my most difficult times and undoubtedly the HSCT would not have been possible for me without her strength and encouragement. As I now suffered from the dancing bug, I had planned a surprise party for her 40th Birthday at a Cuban restaurant with salsa dancing.
Vineetha loves all forms of Latin dancing, and for the last month I have been learning 'salsa by numbers' from a YouTube video. Everything was going to plan, my friends had arrived, we enjoyed some amazing cocktails and a great meal. Then the live band started playing and I thought to myself "Now's the time!".
I prepared my self for some salsa, limbering up my hips and led Vineetha to the dance floor, until I suddenly realised I hadn't danced salsa to music let alone with a partner. But this was not the time to back down, so there I stayed and here's the result.
This would never have been possible pre-HSCT or even pre- CIDP!
And the latest news?
This afternoon, I rode a bike that I had bought as Tanisha's Christmas present. Amazingly, I could still balance after 15 years of not riding a bike. The one downside was that my hands are still weak, and as I pulled the brakes to stop the bike did not slow. I narrowly missed the car on our driveway before ending up in a bush. Fortunately only my pride was dented.