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?
Fatigue
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.
Weakness
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.
Ongoing treatment
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.
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