Saturday, June 30, 2012

Weeks 10 and 11

I think it is safe to say that I am pretty much fully recovered from the effects of the transplant.  There is nothing that I was doing before transplant that I am not doing now, with the exception of swimming as I have been instructed to stay out of public swimming pools for a little while yet.  Although my blood work is looking pretty good I still have to be careful as my immune system will not yet be up to scratch.  The restrictions and prophylactic medications will last up to twelve months.

Saying that my blood work looked good as well is not quite accurate either.  While most of it looked good, my kidney function was just a little off.  Kidney function is measured by creatinine.  The maximum range should be 120 but mine is currently 125.  No immediate cause for concern but still needs to be further investigated.

My haematologist, Prof Prince, seems to think that it is because of the captopril I take for my kidney stones.  I stopped taking it during my stem cell transplant as my blood pressure was very low, but I started taking it again a couple of weeks ago on the advice of my nephrologist.  Prof Prince has suggested that I talk to my nephrologist about it.  I have already put the call in but I am yet to hear back.  I will keep you all posted.

Another interesting thing that has happened is to do with my finger nails.  I have noticed that I have a pail band across each nail on both hands and feet.  I can only assume that it is from the chemo and that my nail development during this time was altered.  It doesn't hurt, nor is it uncomfortable.  I just found it interesting.  And to Bob, Wendy and Cory my fellow transplant buddies.  I bet if you're reading this you just looked at your finger nails.  Scratch that, I bet everyone reading this did;)  Until next time, stay well:)

Friday, June 29, 2012

A sad week.

I hope these things don't happen in threes.  Last week I had two friends pass away, and whilst neither were 'besties', I found it quite sad as I not only contemplated my own mortality, but was thankful for being able to receive  treatment that I continue to recover from that has potentially saved my life.

Basil was a wonderful man who passed away in his 80's.  A veteran of WWII, an active member of the RSL and a veteran firefighter, it is safe to say Basil lived a full and eventful life.  I really liked Basil, if we were ever at a social gathering together (which happened quite frequently courtesy of my wonderful socialite mother in law) I found I always gravitated towards Basil as it was a guarantee of a warm, friendly and interesting conversation.

I met Jimmy as a fresh 19 year old university student.  I had recently joined the university waterski club and Jimmy, being a veteran member, was a couple of years older than me.  About six months after that Jimmy finished his degree and moved to Sydney.  As a result he resigned his post on the executive of the waterski club which left an opening.  Given that there were more senior people in line for the position I was not going to throw my hat in the ring but Jimmy had decided I would be the best person for the job and convinced me to have a go.  Not only did he do that he also ensured I had enough votes to win.  Jimmy was always fun.  His presence meant a good fun time was guaranteed and tragically cancer cut his life short.

Although both these men were quite different they had a few things in common.  Most notably, they both enjoyed life and lived it to the fullest.  If there is one thing to learn from them that is it.  Everyone of us only has one life and when your time is up that's it.  So, make the most of it while you can.  Last night I attended the school concert of my son and I think the last song they sung said it best.  "Have Fun While You're Still Alive". Stay well:)

Friday, June 22, 2012

Week 9



Week 9 and I'm feeling fine.  Seriously, I feel like I'm 95% of the way back to normal.  I haven't caught any bugs for a while now with the exception of the cold I got a few weeks ago which isn't so bad, it just seems to be lingering.  I still get tired unexpectedly from time to time and when I eat I sometimes get bad indigestion which seems to be subsiding over time.

But the most encouraging thing is the blood results.  There is still a few things outside of the normal range but they all are consistently getting better with the exception of the neutrophils which are really low.  Almost non existent low.

However, the best result was from a test call C Reactive Protein (CRP).  CRP is a crude measurement of inflammation in the body.  It is limited though.  Although it will tell you if there is an inflammatory process happening in the body,  it cannot tell you where or how many locations the inflammation is occurring in.  So it could be caused by anything from certain types of cancer to a sprained ankle or a kidney stone.  The point is if your CRP is high you have an inflammatory process somewhere in your body.

Now my disease that I treated with my stem cell transplant is CIDP, standing for chronic inflammatory demyelinating polyneuropathy.  The key word here being inflammatory.  So some one with CIDP should always have an elevated CRP.  Now back at the end of April my CRP was over 100 which is substantially elevated since normal is supposed to be between 0 and 5.  

Now post transplant the elevated reading could have been because of damage from the chemo or the neupogen shots, so that reading should probably be discarded.  But my last reading was 4!  Yes inside the normal range which means I currently do not have an inflammatory process happening in my body, including CIDP.  Well, that's it from me for now, until next time, stay well:)

Friday, June 15, 2012

Am I a bad man?

I recently got news from a fellow patient and friend that had SCT for CIDP at the same time I did.  He reported that he had regained some sensory function, he was walking upstairs much easier and he could even manage a light jog.  He also found his voice was getting stronger.

On hearing this news I had two separate, genuine and conflicting emotions.  On one hand I couldn't be happier for him.  We had our transplants on exactly the same day so I know pretty much better than anyone exactly what he has gone through.  And he has been through the ringer and he has come through it on the other side better and stronger.  On the other hand I have experienced a much less savoury emotion, jealousy.

Normally, if I had a feeling like this I would hide it and keep it to myself, so for me admitting to it is rather new.  In fact, I think it is a first.  So why do I feel jealous? As I said earlier, I went through the process at the same time as my friend, so why haven't I experienced the same amount of improvement?

Well I think that there are four reasons.  First, I'm older, and the older you are the slower the recovery.  Second, I have had the disease for a lot longer, over ten years.  The longer you have had the disease the harder it is for your body to repair itself.  Three, I don't know for sure but I think I suffered slightly more to start with and lastly, everyone is different.  And although we are labelled with the same disease, the progression of our symptoms was different as will be the regression.

The question I ask myself is does this make me a bad person to have this undesirable emotion?  After all, it is one of the seven deadly sins.  Or is it how we act upon them that is important?  I hope in my case it is the latter.  Besides if I decided not to write this post nobody would be any the wiser.  But when I started this blog I made myself a promise that I would be brutally honest about my treatments, opinions and how I felt when it came to health no matter how unpopular it might make me.  And I think I have done that, after all I did write about my fainting incident when I was in Chicago.  Not my finest moment.  And I think this counts as it is mainly about my recovery.

I will defend myself here too.  Although I did feel jealous, I also was (and still am) happy for my friend.  He made the hard choice, went through the pain and now he is reaping the reward.  So good on him I say.  And as the feeling of jealousy has dissipated over the days and faded away to almost nothing, I still remain happy.  So am I a bad person?  I like to think not but it isn't really up to me to judge.  I am what I am and I will be what I will be.

I really can't complain either.  Although I am not running yet I am no longer using a walking stick.  When I have been out recently I seem to keep forgetting it and walk away without it.  So to risk not losing it I have simply left it at home.  Until next time, stay well:)

Tuesday, June 12, 2012

A surprising consultation

If you read my post titled "Welcome to purgatory" last year, you would have realised that I had a less than happy consultation with my neurologist.  To cut a long story short I felt like I was ignored and my neurologist was so anti the idea of a stem cell transplant that she wasn't going to help.  From here I ended up getting all the information for a stem cell transplant together by myself and sending it off to Chicago.  Looking back maybe I was a little hot headed and I could have been a little more diplomatic about the situation but what I did got me the treatment as soon as possible, so I'm glad I did it.

So last week I when I went back to see her I expected one of two things.  First, she would have a real go at me and refuse to treat me, in which case I was prepared for a huge argument or second for her to be super clinical, do the consultation and send me on my way.  I had a plan for this scenario too.  But what she did really took me by surprise.

So what did she do?  She was really complimentary of my tenacity and decision to go and get the procedure done.  I certainly hadn't prepared for that eventuality so I didn't really know how to take it.  We had a good chat and I think she was genuinely intrigued and looking forward to seeing the improvement.

However, it is always hard to get a read on doctors.  They hide their emotions away so I found it hard to get a read on her body language or the tone of her voice so I couldn't really know if she was just saying the words or actually meant it.  Personally I'd like to think she meant it and I believe it to be the truth.  She was very keen to get all my Chicago notes and looking forward to getting the results of my next nerve conduction test in September, which will be the topic of my next blog.

Although I ironically felt under prepared for the consultation as it didn't take any of the avenues I had envisaged, I was buoyed by the meeting.  So far the follow up care in Australia has been great from all the doctors I have seen, and I hope that my experience can assist the medical fraternity here in Australia to accept the benefits of stem cell transplants for AID's.  Until next time, stay well:)

Friday, June 8, 2012

Weeks 7 and 8

I have to apologise.  I have been really slack in keeping up with my blog these last couple of weeks.  However, I have been concentrating on my recovery and things have been fairly good recently.  I have still been fighting a cold, but it is slowly getting better and I still get tired quickly.  But on the plus side I have been getting out and about a bit more.

On the weekend I had an old university reunion which was great fun catching up with a bunch of people that I had not seen for a while and on Wednesday I took my wife and kids in to the Melbourne observatory to see the transit of Venus which will not happen for another 105 years.  Both kids had a lot of fun and it was really great to see this once in a lifetime astronomical event.

But back to my health.  My blood work was ok last week and slowly everything is returning to normal but there was still the same old yo-yoing.  Neutrophils were high, lymphocytes were low etc, but the levels are creeping towards normal.  Anyway, hopefully my blogging frequency will increase next week. I will ry my hardest.  Until then, stay well:)