Monday, 19 August 2013

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

Tuesday, 13 August 2013

Day +22

One of the side effects of the SCT seems to be that my appearance has become younger. This is not solely my opinion, but it was mentioned by R (Nushi's friend's Mum) and also by my friend J last week.

Anyhow, R was due to collect the girls this morning and EBG along with SG were due to visit this afternoon.

So I started my day with a hot shower, and whilst enjoying the water falling on my (bald) head, I spotted my wife's vanilla flavoured body srcub and decided it wouldn't be a bad idea to smear this all over my face. After all who knows how long the look would last, so I should make the most of it.

However, my efforts were wasted today as not one person commented on my new 'youthful' look

..... not one person at all, until Vineetha came home this evening and gave me a kiss before saying "You smell funny! What have you put on?"

Doh!! I was found out!

Darn these scented products .........

  • Seen by 30
  • ERB She said "funny" ? I guess she meant "fabulous" ! 
    14 August at 00:59
  • WM You are so funny insane at times glad to say its not changed your sense of humour!!! :)))
    14 August at 01:57
  • SS one of the more welcome side-effects it seems....and next time stick to the ummm...manly shower gels....
    14 August at 07:31
  • KJ Ha ha ha ...!!!!
    14 August at 14:27

Tuesday, 6 August 2013

Day +15

We're still finding it difficult to wake up in the morning. I was awake by mid-day, but the girls had to be woken at 2:30pm

The girls are missing the US very much. I think Vineetha's cousin with whom they were staying for the last 3 weeks may be responsible for this. They were thoroughly looked after, and I'm glad because they had such a great time. The first five weeks were not particularly fun for them, as they accompanied me to the hospital.

The first of my blood tests was scheduled for today, so I went to the surgery to collect the order before going to the hospital later in the afternoon. 

My condition today?

I am still CPAP free and I can walk barefoot on carpet. My tremor is slightly worse, though this could be due to the stress of travel.

However, I managed 12 minutes on the crosstrainer, and my target is to increase this each day.

Climbing stairs is hard, but it has been easier than when we arrived yesterday.

Anyhow, I'll take each day as it comes ...

Monday, 5 August 2013

Day +14

We landed at 6:45am in Heathrow T5. Mum, Dad and my brother came to collect us and took us home. They had left lunch for us, which we would have later before they left to let us rest and recover from the journey.

In the meanwhile, Vineetha was working like a whirlwind, despite her tiredness. Amy Morgan had advised that I should avoid dust. So my dear wife followed the instructions to the letter, and dusted/vaccuumed our bedroom before proceeding to change the sheets on all the beds. By the time I reached upstairs, she had crashed out and was not to wake until 5pm.

Our next problem was trying to get to sleep at night. All four of us were still wake at 3:30am ...

Saturday, 3 August 2013

Day +12 [Addendum]

Before leaving hospital I had told Dr Burt that first thing in the morning my hearing had improved since the transplant, although this would worsen during the day.

I cited my evidence being that I could hear the nurses talk to me without the use of my hearing aid.

He shook his head before saying "Oh no, I don't think we've done you any favours if you can listen to a woman in the morning"

I wonder what he meant?

WM I wonder???......:)))
3 August at 21:47
DR Let's hope this is the only side effect! 
3 August at 23:03
ML And I had such respect for Dr Burt .......
3 August at 23:15
SB Lol .. You have 3 young ladies to listen to., your ears are blessed !!
4 August at 15:11

Day +12

I decided to re-assess my baseline today, in order to measure any improvement in my condition.

I currently suffer from:
  1. Hand tremors
  2. Poor balance
  3. Weakness in arms and legs
  4. Little sensation in feet or finger tips
  5. Clawing of my hands
  6. Foot drop in my left leg
These are the symptoms that I hope will improve over the next 12 to 24 months.

What is amazing, and an improvement worthy of note, is the change to my sleep. 

For the last 8 years, I have suffered from sleep apnoea which required the use of a CPAP machine (JP has been telling me for years that I shouldn't need it due to my physical build). But if I didn't use it, I would stop breathing at night and so it became part of my bedtime routine.

While I was in hospital, Vineetha noticed that I no longer snored (I've snored our entire married life). So I tried an experiment, 'Sleeping without CPAP' for the last 3 nights.

It's not conclusive, but I could be CPAP free, as I am sleeping well and wake up refreshed. Is this another benefit of the SCT? I don't know, but I'll take it!

Anyhow, we've moved out of downtown Chicago and are now near to the airport for two nights.

The girls will be with us tomorrow night, and we're so glad to have them back.

And on Sunday we will be on our way home ....

  • Seen by 32
  • BTR Oh, I forgot to add Loss of Hearing ...
    3 August at 15:02
  • DC Pardon?
    3 August at 15:07
  • BTR The loss of hearing is quite useful at times, especially when I've forgotten to do something 
    3 August at 15:15
  • BAH Great news about the CPAP. Just remember, little by little things will get better. I bet you can't wait to see your daughters. Have a safe trip home. Your family is always in my prayers. -Bryan
    3 August at 15:43
  • WM Hope we still going to get these daily updates Ben when you get home.... Will miss it otherwise!!! X
    3 August at 19:34

Friday, 2 August 2013

Day +11

I need to thank all of you who have read my posts and given such encouragement over the last 8 weeks.

So what happens now?

I have made arrangements to fly on 4 August, as the girls only return from New York on 3 August 

We will be home on Monday and I have eight blood tests scheduled until October so that my condition can be monitored by Dr Burt

Most of my medication will cease after that, except for an antiviral tablet which I need for 12 months

Most important is the physical therapy which I must work at to rebuild the muscle as my nerves regenerate.

The next 12 months will be very exciting for me, and I look forward to the subtle changes that are already happening each day ...

DP Great to exchange emails yesterday Ben. Fantastic news today and much more to come I'm sure. Take care and hopefully catch up in person soon!
2 August at 10:25

DC Good luck for the next year, I hope we can arrange to come and see you at some point when you're running upstairs like Rocky.
2 August at 11:07

WM Shoot for the moon Ben it's coming your way xx
2 August at 13:34

JPH Great news Ben. So happy to hear you lready seeing subtle changes. Amazing. Praise God.
2 August at 15:47

BAH Great. Remember Ann and I are still here for you.
2 August at 17:16

PN Dear Ben. Vijay and I are so happy for you. We are also waiting to read the next chapters of your book in advance. God bless. Really happy for you, Vineetha and kids.
2 August at 17:18

MW Great news Ben. It's all gone so well and sure you'll continue to build up your strength steadily. Not long now before you'll be home again.
2 August at 22:06

DC Got used to the regular 'Ben' up dates now so you can't stop when you get back
2 August at 22:49

AS Very good news Ben....looking fwd to catching up on ur return
3 August at 02:40

EBG Great to hear you are already feeling so positive.wishing you all a very safe journey. Will speak to you next week. All our love xxx
3 August at 12:50