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

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