Week +52 Stem cell birthday

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.

Week +27

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'. 

May 2013

Early June 2013

Late June 2013

Early July 2013

Mid July 2013

Late July 2013

August 2013

September 2013

October 2013

December 2013

January 2014

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. Every morning, you wake up the same - 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

Other benefits

• 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 ....

The Look

• 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 ......

Week +22

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:

The Elf Dance - CLICK HERE

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.

Salsa Dancing - CLICK HERE

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.

Week +15

I woke up this morning feeling very achy. My legs hurt! My arms hurt! My shoulders hurt! However, this was not a bad thing because it meant that I could feel the effects of what I had inflicted on myself on Saturday night. Let me explain.

We had been invited to a 50^th Wedding Anniversary party on Saturday night. 50 years is a great feat, and the happy couple were boogying the night away to Bollywood tunes. A quick glance over to my dear wife, and I knew she was desperate to get on the dance floor. So off we went and spent the rest of the evening dancing (well, Vineetha was dancing and I was moving about in a not so pretty fashion). At one point, I did lose my balance and ended up grabbing her bottom to stabilise myself. She just thought I was being frisky!

The great thing is I didn’t fall over, which I probably would have done pre-HSCT. As well as having increased energy, my balance has definitely improved!

So, a little re-cap on the month since my last update.

I had been summoned by the DVLA to take a driving appraisal. I thought I was a relatively competent driver (Doesn’t everyone?), but I was apprehensive about taking a test. After all, my last driving test was taken when I was 17 and I was pretty sure I had accumulated a multitude of bad habits since then. 

A quick eyesight test (by reading a number plate on a car in the car park), and then followed a 40 minute drive, which was partly independent and partly instructed. Believe it or not, I received an overall A grade assessment, and left the driving centre with a bigger head than when I arrived.

On the physical side, I decided I should start walking outside. On the first day, I left the house to walk up the hill on our road. I reached a bus stop at the top of the hill, and decided to take a rest before returning home. I felt good enough to carry on, and so I did, walking a further mile until my legs started buckling. 

At that point, I felt like the Apollo 13 astronauts questioning whether I had enough energy to get back home. Fortunately, Vineetha was at around. So a quick call and she was there to rescue me, again!

Halloween arrived, and I had booked the Fright Night event at Hylands House. We had been warned that it would be very dark, and I was a little worried because of my poor balance. The girls really wanted me to go, and Vineetha told me she be there to hold my hand as support. 

When we reached, I took my crutch with me and managed the whole evening walking the Halloween trail and the grounds of Hylands House without any other help. This was proof to myself that my balance has actually improved, as well as an increase in my physical stamina.

Over the last week I have started some gym work, mainly using the treadmill and the weights machines. I can’t lift very much at the moment, but my strength is improving after each session.

And finally, my hair is growing back with a vengeance … even my eyebrows. Actually, my excessive eyebrows have been really bugging Vineetha, and I was coaxed into having them threaded and plucked to make me look less Neanderthal (apparently). It’s painful!! And my advice to all men out there is, DON’T DO IT!!

The last month has demonstrated slow but steady progress, and I can only pray that this will continue.

Thank you Dr Burt!

Day +70 [Week +10]

As the post-transplant days are moving on, the actual procedure feels as if it happened a long while ago. So bearing this in mind, I am going to change the time scale from Days to Weeks which means that I am now into week 10.

My blood work continues to be drawn fortnightly, and results have been good. As well as that, I am on course for my steroid reduction as I reduce to 2.5g daily from tomorrow.

I would love to say that there has been visible improvement since the Day +42 post, but in all honesty this has not been the case. 

However, under the surface things are happening!

My legs feel much firmer than before, such that I no longer feel the need to carry my crutch when I leave the house (Note: I have needed it for the last year)

I can walk upstairs much quicker than before, and I even attempted walking down stairs without holding the rail (I wasn't totally reckless, as I was already halfway down and in the event of a fall, I would hope not to hurt myself too seriously).

My fitness seems to be improving as the recovery time is much shorter after my cross-trainer sessions.

I am re-learning the art of tying my own shoe laces!

There appears to be some dexterity getting back to my fingers, as I practice picking up little objects and putting them into a pot as part of my daily exercise.

And I have hair growing, both on my scalp and face!

The downside of my new hair growth is that Vineetha and now the girls keep touching my head, as they said the hair "...feels nice and soft, a bit like a furry dog..."

Yet again, the girls of the household put me in my place :(

It reminds me of watching the girls play when they were toddlers, and I heard Tanisha tell Anoushka "I'm going to be Mamma, but you can be Daddy or the dog!"

Day +42

And so another two weeks has passed, and our home life is gradually getting back to normal.

Vineetha is back at work, and it's almost as if she has never been away. The girls go back to school on Wednesday, and we are frantically getting them prepared for the first day back at school.

For me it continues to be onwards and upwards, although there has been the odd glitch, which I shall explain. 

My blood counts have been tested on a weekly basis since our return from Chicago, and although there were mild variations the doctors had not been concerned until the results of the 3rd test arrived. My creatinine levels had gone from 58 to 63 and finally to 118, and now Chicago was paying attention. They told me to stop all medication that they had prescribed, as they were really confused by this and wanted to monitor subsequent blood results to see what the effect of suspending the medication would have on the creatinine level. 

Anyhow, one morning I went to the kitchen to make a cup of coffee and as the kettle was boiling I spied a white plastic pot (see below)

So I asked my dear wife what she used this for and she told me "I've started putting it in your smoothies to help build your muscle and give you strength".

So now I have to explain to Chicago that there may be an alternative reason for the raised creatinine level! Anyhow, we stopped the 'extra ingredient' from the smoothies and waited for the 4th blood result. And lo and behold it had fallen from 118 to 64. 

Oops!! (Note to self: check what goes into your food and drink)

Despite this glitch, things have been going well, and yesterday I took the next step in the steroid reduction from 7.5mg daily to 5mg daily. Fortunately, I am not feeling any ill effect from this and I hope this will continue.

I also noticed an almost overnight improvement in my walk on Day +37, demonstrated by a stronger step and a longer gait. It's still not a very elegant movement, but it's a positive!

Another positive occurred almost by accident, and I still don't know why I did it. As I was walking back to my study, my legs felt really good and I had a sudden urge to jump. 

So I did, and to my amazement I cleared the ground (not by much but there was definite ground clearance). I couldn't believe it as I haven't been able to jump for years. I was so excited that I asked the girls to video it.  The result is below:

One small step for mankind, one giant leap for Ben Rajan!

I emailed Vineetha the clip, and she asked whether I would send it to anyone else. I promptly told her that I was going to show the clip to anyone who would watch it.

So have there been any other changes?

The effects of the chemotherapy seem to be waning, and I have started some facial hair growth. This is not all positive as it means I have to start shaving again. 

As well as that, my scalp has developed a slight shadow which means my hair is growing back ( ... and just when I was getting used to the bald look). Vineetha is very pleased about this!

And finally, I took my first drive in the car last night, since leaving for Chicago back in June. It felt good!

Day +28

I can't believe it has only been four weeks since the day of transplant. So much seems to have happened since then.

By way of progress reporting, I will be moving to a fortnightly or longer schedule since the changes will be relatively slow from now on.

Anyhow, as of today I can report as follows:

1. Medication

My Pre-SCT cocktail of medication has ceased, and I am on the meds prescribed by NMH until the end of October. At this point, I should no longer require steroids, which will be fantastic.

Thereafter, I will only require an anti-viral until July 2014 and I will no longer return from the pharmacy each month with a large shopping bag of medication!

2. Sleep apnoea

Use of CPAP stopped on an experimental basis. No significant deterioration in sleep pattern from stoppage. Likewise, there has been to significant improvement in sleep pattern from resuming its usage.

3. Exercise

Use of cross trainer at home

5 Aug - 12 minutes
6 Aug - 16 minutes
7 Aug - 28 minutes
8 Aug - 45 minutes
9 Aug - 0 minutes
10 Aug - 0 minutes
11 Aug - 0 minutes
12 Aug - 10 minutes
13 Aug - 12 minutes
14 Aug - 15 minutes
15 Aug - 14 minutes
16 Aug - 12 minutes
17 Aug - 0 minutes
18 Aug - 0 minutes

The first week was great, as I was able to push myself every day. This was probably helped by the fact that I was sleeping regularly throughout the day and night. In addition, my steroid intake had only just been cut.

My 45 minute session (on 8 Aug) was a milestone, but also a killer as I was extremely fatigued for almost three days. I'm not sure that I've quite recovered. But I have a theory that the fatigue is due to the drop in steroid intake and my shortage of sleep since Vineetha and the girls have gone back to our regular life.

So my next plan of attack is to ensure I sleep for at least 10 hours, and not to overdo my cross-trainer sessions. This will be reported on my next update.

4. Other matters

4.1 I am showing some facial hair growth, though nothing on the scalp as yet

4.2 My left hand forefinger is showing some sideways movement (this has not happened for several years)

4.3 My hearing appears to be better in the morning, with deterioration as the day goes on (the girls suspect I am putting it on when I don't want to hear something)

4.4 My left leg feels stronger, which it hasn't since last summer when I broke the tibia and fibula

4.5 The tiled floor in our bathroom actually provides my foot with feedback. Pre-SCT it always felt as if I was stepping onto a slippery surface due to the numb sensation. It is still numb, but the improvement in sensation is moving in the right direction.

4.6 I have been told my voice sounds stronger.

4.7 I have been told that I appear steadier on my feet, with less of a wobble when standing still.

4.8 I was able to pick up a three-can pack of sweet corn yesterday. Normally, I would have dropped it immediately, but I was able to hang on for at least 10 seconds.

4.9 I have been told that I look younger, and the black areas under my eyes have reduced. This may be due to the use of Vineetha's vanilla scrub, but I'm taking that one!

Much of this is subjective, and there are other minuscule changes that I will not mention since I am not sure of these myself.

But I am taking each day as it comes, and trying to manage my fatigue (which is the biggest hurdle at the moment)

• Seen by 34
• NS What a wonderful update and I will keep you in my thoughts and prayers.

  19 August at 23:45
• RV Please increase exercise slowly and steadily. As in 10% each week. The recovery is slow . don't push yourself over the limit.

  20 August at 01:56
• TJ Good to hear!!!

  20 August at 07:39
• DR Great news. Sounds like you over did the exercise  You'll get there. Sounds like its time to sell shares in pharma! 

  20 August at 09:53
• BTR I think I need to spread the exercise sessions throughout the day (many short sessions, rather than one long session working to exhaustion). As for the medication, there are still plenty of people out there who need them. So I wouldn't get out just yet

  20 August at 09:59
• WM Well done Ben keep up the good wk and our updates....:))) Xx

  20 August at 10:47
• BEVJ Hey Ben. .. good to hear about every bit of progress you are making. We were away for a couple of weeks but had been monitoring your progress. Must catch up soon. 

  
  

  Tony sends his best too

  20 August at 15:38
• KJ Great to hear your progress ..... It will be great to be medicine free . God bless all of you .....

  21 August at 16:44