Tragedy

It is with great sadness that today I am writing about a fellow HSCT patient that passed away recently after complications.  I did not know Gabriella.  I hadn't even talked to her but the HSCT for autoimmune diseases community is still quite small so I certainly knew of her.

However, as an HSCT patient and advocate of the procedure it raises many questions.  Some of these discussion points can be of a rather "sticky" nature but I think it is important to raise these questions and talk about them.  Essentially we need to tackle the proverbial elephant in the room.  My points are:-

• Is the procedure safe and is it worth the risk given the potential benefit?

Personally I feel that given the evidence that we now have available it is a relatively safe procedure.  With any medical procedure, from a simple blood test to open heart surgery there is a risk.  The fact that other facilities offering the procedure have not changed their practices at all says to me that is not the case.

• Is the institution in India to blame?

Honestly I can't answer this.  I have never been to India to see the facility or meet the doctors involved. In fact I have never even researched the hospital so I can't and won't give an opinion.  However, the hospital has shut down its HSCT unit pending an investigation.  I can only think this is a good thing.  Carrying on in a cavalier fashion as if nothing had happened would be negligent. 

• Who else might be to blame?

Blame is such an ugly word.  Blame assumes that someone was at fault and that might not be the case at all.  It could very well be that all protocol was followed thoroughly and her death was nothing more than a tragedy.  I am actually going to use the word responsible as there is not an assumption of guilt on those who are responsible.  So who is responsible?

Now before you condemn me as an insensitive evil pig please read to the end as I will explain myself.  The person most responsible is the patient, in this case Gabriella.  "My Gosh" I hear you say.  "Wasn't she the victim?"  Well, yes she was.  But she was also the one who decided to go through with the procedure.  She would have known the risks and would have weighed up the pros and cons, the risks and benefits and would have made her decision.

I know this because it was the thought process that I went through before I left for Chicago.  I had weighed up all the variable and outcomes I could think of and yes.  The fact I could die did play a part. Some people thought I might be mad.  That I was gambling with my life.  I could not have thought of it more differently.  Sure, there was a choice not to have the procedure.  But that choice involved still having CIDP.  Living with pain.  An inability to move properly and a massively dysfunctional sense of feel and touch coupled with balance issues.  When this is you situation, you start to think very differently about your situation.

In a similar way to me having brain surgery, I went into my transplant with my eyes wide open.  I am sure that Gabriella did too.  I also have to say that if I did die due to my transplant I would not have wanted anyone else to be responsible.  I made the decision and I was prepared to take responsibility for whatever the outcome.  I had even prepared a series of video messages for a variety of people and one of the points I wanted to make was that I was the one responsible.  The last thing I wanted was for people to go around blaming each other for my decision.  And whilst I got the blessing to go ahead with it from close friends and family, as well as past patients who advocated strongly for the procedure, The final decision was mine and mine alone.

• Would it have stopped me having my transplant had this happened to prior to me going to Chicago?

It is a tough one to answer because I have the benefit of hindsight.  I think I would have still gone through with it.  I would have looked at the mortality statistical data for my chosen institution and decided it was the right decision.


It is never easy contracting a nasty auto immune disease like CIDP or MS.  We just have to make the best decisions that are available to us at the time.  I for one believe that HSCT is a warranted and viable option for autoimmune diseases and I would still recommend it to anyone who is in a similar position to what I was.  Gabriella, I hope that you can now rest in peace and I also hope that we can learn from your experience so your passing was not in vain.

Stay well:)

Vaccinations

My goodness me, it has been a while since my last post.  Apologies.  I don't have a really good excuse, I have just been lazy.  But hey, I'm writing now so good for me!

A great deal has been happening recently and for once it is not he who has been the focus of the medical interventions.  That honour goes to my son who broke his arm (which I blogged about last time) went to hospital for a minor dental procedure and managed to scrape all the skin off his index finger which then became infected and needed to be treated with antibiotics.  Aside from the dental procedure, which was purely cosmetic, the other two were just a nine year old boy being a nine year old boy.

After saying all that the doctors have not completely eluded me either as the juggernaut, which is my medical story rolls on.  I had blood work done recently which finally showed my blood levels had returned to normal.  This meant that it was time to revisit my immunisation regime and my oh my there are a lot of them.

Now for most HSCT patients this is nothing more than procedure but with a patient that had HSCT for an auto immune disease this process is much more complicated.  I will elaborate.

Auto immune diseases do not just happen.  Some people may have a genetic predisposition to contracting one of them but there is always an environmental trigger that starts the process.  There are many things that can be the trigger.  A virus or infection, a toxin, a medication or allergic reaction... The list is almost endless but one of the biggest suspects is a vaccine.

It is really quite logical.  A vaccine is designed to trigger an immune response that means if a person is exposed to the disease that has been vaccinated against, the persons immune system will attack the disease.  If the immune system misinterprets the vaccine it could end up causing an autoimmune (AID) disease.  The problem is most medical professionals will refute this link but there are sufferers of autoimmune diseases that swear black and blue that the vaccine was their "trigger".

Personally, I believe that a vaccination could be responsible for causing an AID.  But the question is whether the benefit of me having a vaccine is worth the risk of having a relapse.  Since I am fairly sure that a vaccine didn't trigger my AID in the first place I think that a vaccine won't do it to me this time.  However, I'm going to go pretty slowly with it just to be safe.  My program will be on and off for over a year.

Just so you know, this is a decision I have taken very seriously.  I let you all know how I go as I progress.  Until next time, stay well:)

Am I Fickle?

One of the luxuries of being a patient is that you have the luxury of being treated.  You can decide your favored treatment option and then change your mind right up to the eleventh hour.  You can change your doctor of preference as and when you please without a good reason if that is what you wish to do.

Now I certainly don’t recommend that this is what you do, but if there is a good reason for changing your mind you should be aloud to do so.  And realistically that is what I have done recently.  Twice in fact.

Now just to clarify, my recovery has been going really well and I am more than happy with the way things have been progressing, but you don’t have something as major as a stem cell transplant and expect everything to go perfectly.  And I have had my speed bumps.  They haven’t been huge or insurmountable but they are there.

The first and biggest problem is this horrid carpel tunnel syndrome (CTS) that has been creeping up on me and slowly getting worse over the last couple of months.  I’m convinced it is different to the arm pain that I experienced before my transplant, the symptoms I have now are typical carpel tunnel symptoms.  Before my whole arm from below the shoulder hurt.

So the question is what to do and what is causing it?  Well although the clinical diagnosis of my symptoms is CTS the doctors like to confirm with a more objective test.  This would normally be a nerve conduction study but the remnants of my CIDP would mask any conclusive data that I received from this test.  They could do an MRI of my hands but MRI’s and brain implants don’t really mix too well.  So I have to revert to the clinical diagnosis.

It is also important to decide on a treatment option.  And this is where we run into difficulties.  In my transplant notes regarding my recovery it says not to have any surgery within one year of my transplant date.  But most of my doctors here agree that carpel release surgery is the best way to go and my neuro here in Melbourne (who is normally very conservative) is actually pushing for it.

My GP has proposed a short-term solution of cortisone injections.  And here comes my first fickle moment.  To date I have followed the instructions of the people in Chicago, but I believe that I need the surgery.  Research shows the longer CTS goes untreated the greater the chance of long term or permanent damage.  So I think I am changing my mind about following the Chicago instructions.

The second fickle moment is to do with my prophylactic medication.  I have been advised by the good people in Chicago to stop taking Bactrim, an antibiotic, as it has been six months post transplant.  However the hematologist I see in Melbourne has had a look at my blood count and said that while my white blood count is fine my lymphocytes are still very low and I should continue with Bactrim to avoid chest infections.  So again my fickle nature has ignored the advice of the good people in Chicago and gone with the doctors here in Melbourne.

But honestly, is it really fickle?  I have weighed up my options, done my research and made my own decision.  One thing that hasn’t changed is I have always taken responsibility for my health and ultimately I will make the decisions about my treatment.  I am right or wrong?  Only time will tell.  But I guarantee you this.  I going into this with my eyes wide open.  Well, until a general anesthetic anyway.  Until next time, stay wellJ

Back in Chitown

It is so nice to be here again, and this time without the daunting roadblock of a stem cell transplant to sour the mood.  Actually in is completely different in every way.  There will be appointments and tests, but there will be no nasty treatments and I'm looking forward to it as for once the I am expecting good news!

THe other big difference between this time and last time is that we have the kids with us.  And what would a trip to the USA be without a trip to Disneyland?  We all had a great time and I surprised myself by the amount of walking that I managed to do without getting tired.  We nearly managed to do every ride in both parks.  There is definitely something to be said about going outside of the US school holidays as queue times were down and the streets weren't so busy.

The highlight for me would of had to be radiator springs.  It look just like the movie and you seriously would have thought you were there if it wasn't for all the people.  I have to say that Disney Land is the best theme park I have ever been to and even after 57 years of operation.  Disney, I take my hat off to you.  But there was one thing that bugged me.

Now I expect this to be a little controversial, so here goes.  First, I do believe that people have the right to choose their own lifestyle and eat what they like and indulge in their own vices etc.  I also think that all people should have the right to medical attention whether they contribute to their condition or not.  But it should not entitle you to more than anyone else.

So what happened?  We were standing in the queue when two obese people, who would not have been older than 30 pulled up in their scooters, got off, entered through the exit gate jumping the queue and got straight on the ride.  Now I'm all for these people being assisted, but when someone who clearly does not take care of themselves gets to jump the queue ahead of everyone else I think that is wrong.  Did I also mention they stank of stale cigarette smoke?  I know a heap of people that have been hit with a crippling disease simply because of bad luck and no fault of their own and almost feel too proud or guilty to jump the queue.

I feel that the queue jumping exception was created to help the unfortunate and others now simply take advantage of it.  I'm reminded of an episode of the Simpsons where Homer puts on a pile of weight so he can claim disability and work from home exposing a loophole in the system.  It also saddens me to see so many people with uncontrollable disabilities who try their absolute hardest to get better and can't.  these other people don't seem to care and in fact are rewarded for their laziness.

However, like I said, it bugs me.  Next time hopefully I will be reporting good news to you from my Chicago followup.  Until then, stay well:)

Vlog

Choices

I was reading on Facebook recently about a person that was considering the same procedure (HSCT) I did.  However, where as I was fully supported in this decision by my close family and friends, this person in question was not supported.

Now it wouldn't take a rocket scientist to figure out which side of the fence I sit on.  Family support with something like this is critical.  If you do not have it, it simply adds another stress to what is already a remarkably stressful time.  I believe that a negative reaction is own from ignorance.

Don't get me wrong, I do believe that family members do want the best for their loved ones, but they hear words like "stem cell transplant", "experimental" or "medical trial" and they instantly think the worst.  Now there is a risk with the procedure.  But, normally there is a risk with anything.  Driving a car, catching a plane, people have even died going to the toilet.  But that is really irrelevant and not the point I am trying to make.

Or is it?  You can't not go to the toilet, it is something that has to be done.  Now this choice, the one I made has one more variable and it is only a little bit more complicated than to have or not to have it.  The choice is to risk a dangerous procedure in an attempt to reverse the devastating effects of a crippling disease or attempt to live with the disease and the risks of all the conventional treatments that go with it.

Wow, when you look at it like that the scales look a lot more balanced.  I think that some people look at it like a game of chicken where the worst that can happen is you end up dead and the best result is to carry on as normal.  In this case there is risk associated with both choices, but one at the very least carries the benefit of potentially reversing the progress of your disease.

So next time you know someone that you believe is making a needless and risky decision.  Take a second to think about it and do a little research.  Your opinion cannot be ignored if it is educated and informed.  And maybe, you might just think a little differently about it.  Until next time, stay well:)

My HSCT story

Stay well:)

Week 12 and 13

Yes, I know I haven't written for a while.  But that isn't quite true.  My big news is that I have decided to write a book.  It is about health and I have started so stay tuned.  I will divulge more later but as most of my readers are people with health issues I would like to call on your help.  Not yet, but soon I will be graciously calling on you all to help.

It has also been school holidays so I have been busy with the kids but these are just excuses as I decided recently to dust off my Nintendo 64 and fired up Zelda: Ocarina of time, which is my favourite game ever (and probably the main reason for my lack of writing) but in the interests of professionalism I'm going with the first two excuses.

So, how am I doing?  Really well actually.  Everything seems to be on track.  My blood work was fine with the exception of my kidney function which was elevated.  The haematologist I am seeing here was concerned but seeing as I have a kidney problem too I also have a nephrologist who we consulted over this issue.

So what caused this elevation?  During my HSCT I had really low blood pressure so the doctors at North Western decided I should stop taking Captopril, a drug I take for kidney stone prevention.  I started taking the drug a couple of weeks ago and this is the reason for the elevated creatinine.  Apparently it does not damage the kidneys, just slows them up a little.

As my neurologist was not overly concerned, neither am I.  But one think that remains in the question of whether the treatment worked?  Stay tuned, I will blog about that later this week.  Until then, stay well:)

Thank You

Many people have sent me their congratulations about the treatment that I received in Chicago and also told me how strong and tenacious I've been.  Personally I appreciate the accolades but I don't see it.  I feel I have just done what I had to do to beat my disease.  Because, let's face it, it's much easier to live without a disease than with it.  So that being said maybe I took the easier option?

Anyway, whatever you want to call it, the truth is I could not have done it alone.  So I have decided to give everyone who helped a long overdue thank you.  There are many people so the question is where do I start?  I will also apologise now if I forget anyone.  So here goes.....

First, my medical team here in Australia that assisted me in getting everything ready to take to Chicago. There was a lot of preparatory work to do and I could not have done it all by myself.

My friends and family here in Australia who supported me before I left and helped keep my affairs in order and look after the kids while I was away.  Especially the in-laws.

To all my friends in Chicago and the US (both old and new) who made my trip not just a little less lonely, but a lot less lonely.

The medical team in Chicago.  From doctor Burt all the way down to the PCP's on the 19th floor.  The care was fantastic.

To all my online friends that have wished me well and followed my blog, I have to say I have gained a world of strength knowing I have had so many in my corner.

Bob, Wendy and Cory who went through the process at the same time I did.  Although I would not wish CIDP on anyone or see them need a stem cell transplant, it is nice to know you're not alone.

To my parents, without who's financial assistance none of this would have been possible.

My mother, who also spent a good deal of time with me whilst I was in hospital.

Lastly to my wife who also spent a good deal of time with me in Chicago and also put up with me during my recovery.

Stay well:)

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:)

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:)

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:)

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:)

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:)

Week 6

Labs were fine from last week and I didn't have to have them done this week which is always good news.  The diarrhoea I was having last weekend has cleared up but seems to never be far away as all my movements seem to be softer than normal.

I went and saw Professor Miles Prince this week and he seemed to be relatively happy with my progress.  It is interesting that there are differences in the post transplant care between what the people in Chicago want me to do and what the doctors at Cabrini use.  Personally, I went through the procedure in Chicago so I feel more comfortable following their protocol than the Cabrini protocol.  I got the feeling that Miles would prefer to follow the protocol from Cabrini, but he said he was happy to follow their instructions.

There has been no real improvement of note this week although as with every week so far I do feel the slow recovery from the chemotherapy.  Unfortunately I did manage to somehow contract a cold which had to be pretty amazing since I've hardly seen anyone.  I think I caught it off my daughter who has had a mild sniffle.

Normally if I catch a cold it doesn't effect me that much but with all I've been through and a weakened immune system, this one has knocked me for six.  I feel like someone has pumped slime into my head to the point it is about to explode.  My nose keeps running, my eyes keep watering and my ears feel blocked.  This is coupled with a headache, lethargy and a nasty cough.  I talked to Miles Prince about it and he said to just get some rest and drink lots of fluids and call him if it gets worse or I start running a temperature.

Well, I think that's it from me for now.  I will update you all again next week and hopefully have other interesting or humorous titbits to share in the mean time.  Until then, stay well:)

Week 5

At the moment it is a little bit like two steps forward, one step back.  On the whole I am getting better.  How I feel now and how I felt three weeks ago when I arrived back in Australia are worlds apart.

I am still feeling quite tired from time to time.  I find that if I do something that involves being active I get quite tired but there is no rhyme or reason to it.  For example, the other day I went and had my blood test done and went out for coffee with my great uncle and I was pretty good afterwards.  But then yesterday my daughter wanted to show me something in her room so I went upstairs to have a look and after fifteen minutes I was exhausted.

On the whole there is continuous improvement.  The diarrhoea that I experienced last week slowly eased off.  The C diff test came back negative so what was causing it was a bit of a mystery.  It was probably the antibiotics but then the one step back.  This afternoon it returned, and with it the feelings of lethargy so I have been a real couch potato.  I was also supposed to go to the in laws for dinner, but with a movement around every half an hour it is probably not a good idea.

Unfortunately I have not got my blood test results back from this week.  As my specialist is organising them and not my GP I am using a different lab and I cannot get the results until they have been reviewed by a doctor.  It is kind of annoying as I need to send them to Chicago.  On the bright side I do not have to have my blood done every week now.  It is now fortnightly so I get a week off.

On another note I had my first shave since the middle of March yesterday.  It had to happen sooner or later and is a sign my hair is growing back.  But it isn't growing back completely.  The hairs on my beard used to be dark brown, they are now blond and only really growing on my chin and under my nose.  Growth has not recommenced on my cheeks or neck.

Well, I think that's it for me today.  I'll give you another update next week.  Until then, stay well:)

Is it working?

What a massive question.  It has now been a month since my transplant so I have been asking whether or not I have seen any improvement.  And my answer.....  I'm not sure.  I will elaborate further in a minute, but first I want to answer a different question.  That question is if I didn't work am I still glad I did it?

The answer to that is much more simple.  Unequivocally, yes.  Why?  Well for a couple of reasons.  It is not in my nature to stop trying to find a treatment that will make me better.  I couldn't leave such a promising treatment alone.  I had to try.  Second, I could have waited ten years to have the procedure when hopefully it would become a mainstream treatment.  If I had done it then and it worked I would probably feel bitter about the ten years I had lost to the disease.  Also, knowing that there was a treatment that could work that I hadn't tried would eat at me.  At least if I tried and it didn't work I would know and I can move on.

Now back to question one.  Why am I not sure it has worked yet.  There is evidence that I have seen slight improvement, but I guess the lawyers would call it circumstantial.  So what evidence do I have?

First, the sore arms I had nearly every night have all but disappeared.  If anything I just get a small tingling in my fingers but it does not wake me or hurt.

Second, I may have a slight increase in movement when I do some exercises.  When I try to stand on my toes I have a slight bit more elevation than I used to and if I try to jump I can actually feel a bit of space between my feet and the ground.  However, I have recently lost eight kilos so the difference in weight could be what is allowing me to achieve this.

Third, a couple of my friends have said that my voice sounds better.  And by better I mean clearer and steadier.  I also have slightly improved bladder control.  Now, let me clarify, I wasn't going around wetting myself but I was finding that when I felt the urge I had to go quite quickly.  I have found that recently I have been able to hang on longer and retain more fluid too.  I was never sure if this was a CIDP thing or a drawback from all the kidney surgery I have had.  Honestly I think it is a little bit of both.

So, why am I still not sure?  The results if real are incremental  at best and if I think about it rationally I have to question the validity of the results.  It is all subjective data and emotionally I really want it to work.  I really, really want it to work and my rational mind must ask whether this compromises my objectivity?  Damn my rational mind!  It would be so much nicer to live in ignorant bliss and convince myself it was working.

Anyway, I have made a solid mental note of where my capabilities lie so when I retest myself I will have something solid to compare to.  But before we crack the champagne I think it best to wait for some more definitive proof.  I'll keep you posted.  Until then stay well:)

Week 4

Improvement has continued which is great.  The fatigue and tiredness seem to be a little less, but if I have a burst of activity I will normally have to have a rest in order to recuperate.  Another good thing is the UTI I had has cleared up but might have left a nasty side effect.  The antibiotics that they gave me for the UTI also clean out the good bacteria in your intestines which allow the bad bacteria to proliferate.

As a result I have been having lots of diarrhoea.  I have raised this with the good people in Chicago and also my doctors here and they agree that I should have a test for clostridium difficile (C-diff) the bacteria that normally grows in the absence of good bacteria.  I should get the results on Monday.  The irony is that in order to treat c-diff which was caused by antibiotics, the treatment is, yes, you guessed it, more antibiotics.  But I hope it is diagnosed quickly as I am getting tired of the diarrhoea all the time.

The other question I have been asking myself a lot is has the procedure worked?  Well, it is a difficult question to answer so I will make it the subject of my next post.  Until then, stay well:)

Week 3

So sue me!  I haven't blogged for a while.  But I guess that should be a clue in itself.  Don't worry, I haven't been slowly dying or anything, I have just been super tired.  I am still getting up in the morning and by the time I have showered and dressed and made it to the family room I'm exhausted and about all I can manage is to lie down on the couch and rest.

And that is about the story of my life at the moment.  Do something, have a rest.  Go to the bath room, have a rest.  Eat something, have a rest.  I am comfortably sleeping more than 12 hours a day.  On the good side when I'm resting, either in bed or on the couch I feel perfectly normal, it is not until I start doing stuff that I realise I am still recovering and it is going to be a while before I'm back to normal.

However, if I am to hasten my recovery I have to start being more active.  But it does have to be measured.  Too much and my body will regress or I will get sick, which is what I think happened when I travelled home.  I think it was just too much.  Too little, and I may hinder my recovery.

But, the main thing is I'm getting stronger everyday, but I don't think it will be an overnight fix.  I think it will take a deal of time.  How much?  Well, your guess is as good as mine, but while I'm home and dare I say it "feel human" I can wait.  My blood work is still seriously out of kilter.  When I got last weeks results reading down the list nearly every item had either an 'L' for low or a 'H' for high next to it and also bolded just to hit home that the test was abnormal.  I think my blood work returning to some form of normality will dictate my recovery.

As for my appetite, I am pleased to say I have not felt nauseated in a few days now.  I am eating three meals a day, but I find I am not really that hungry at breakfast or dinner but lunch I'm ok.  Portion size is down on all meals still, but I am eating an adequate amount.  The other funny thing (which is probably good) is the cravings I've been having.  I believe that when your recovering from illness you need to listen to your cravings as they are trying to tell your body what it needs.  I have been craving simple fresh foods like vegetables, cheese (just plain old cheddar, nothing fancy) and good quality meats.  Off the menu has been chocolate, desserts and coffee.  So I have been eating remarkably healthy although less.  Another plus side to this whole saga is that I have lost eight kilos!  See honey, I told you I'd lose weight;)  The question is will I keep it off?

On another not so good note my suppressed immune system managed to let a urinary tract infection (UTI) through the guard.  Being cystinuric I am no stranger to a UTI so luckily I caught the symptoms early and got to the doctor soon for a course of antibiotics.  However, this was the first UTI I have ever had where I have not been symptomatic with a kidney stone or post kidney surgery.  However the antibiotics seem to have done the job.  I am no longer symptomatic and in that respect I feel fine.  Well I think that is about it for now.  Until next time, stay well:)

I missed a couple

Side effects that is.  No major upsets though.  These side effects were nothing major but in the interests of being thorough I thought it important to include them.

Hiccups - And not just any hiccups, these were so loud they could be heard on the south side of the Chicago river and made such a change in the air pressure everyone yawned to equalise their ears.  Honestly, they were loud but they didn't annoy me any more than normal hiccups.

Dry lips - A combination of chemo, air conditioning and mild dehydration.  We have all had it before.  I need not elaborate.

Dry hands - Again probably due to the chemo and air con but also because I was almost obsessively washing my hands all the time.  It didn't hurt or itch and cleared up with some moisturiser.

Well, I think that is it now.  If I think of any more I will simply add them here rather than writing a new post.  Until next time, stay well:)