Sunday, April 21, 2013

All Gone Well


Well, I must apologise.  I said I would write to let you all know how I went from my surgery within 48 hours.  It has now been three days since I woke up from my forced unconsciousness and as of yet I have failed to write anything.  If you were worried, I am sorry but the good news is that everything went well and I am well on the road to recovery.

There are a few things that I didn’t really like about the procedure though.  First, as I mentioned in an earlier post, I went to a hospital that I had never been to before and although I was perfectly happy with the hygiene, cleanliness and quality of the hospital from a medical point of view it was no where near the best I had been to.

It was all the little things.  Being a much older hospital all the corridors were very narrow.  100 years ago when the hospital was built the trolley beds were much narrower so to fit bed through was easier and didn’t require as much room.  These days the average bed is much wider and therefore requires more room.  So much so that two beds could not fit down one corridor.  This would be even more problematic if people left wheel chairs, IV poles etc down the way.  When I went for my morning walk (on the only morning I was there) it felt more like an obstacle course than a hospital ward.

Second, the plumbing.  There were no mixer taps so the temperature of the water was either hot or cold.  To get a mix you had to fill the sink up.  The other problem with the plumbing was that the old pipes made a lot of noise.

Third, the food.  Now hospitals, along with schools and airlines have very poor food but in recent times the food at all locations has markedly improved.  Unfortunately, not here.  But at least it was only one night.  Lastly, my biggest complaint.  There was no WiFi!!!!!

However, if I had to go back there I probably would as there is a great deal more to hospital treatment than the little fluffy extras to a hospital.  The staff were pretty good, and I am very comfortable with my doctor and this limits the number of available hospitals.  I guess that I could try and convince my urologist to change his list of hospitals but I think that would be a very hard get.

Thinking about my whole experience I do remember a post I wrote recently about how I found it hard to recall my three week hospital visit in Chicago.  In the middle of my hospital visit at the Freemasons I could recall that my experience was really similar to my last kidney stone outing but before I went in I recalled it as not nearly being so bad.  I think that the mind does play tricks on ones self in order to protect itself from mental trauma.  However, even in the middle of all of it I still think that the intervention is a small price to pay to be stone free.

There is one thing that I really find more annoying than others though, and that is urinary stents.  All the medical professionals say they don’t hurt.  I hate to burst their bubble, but they’re wrong.  You see, a stent basically ensures that swelling doesn’t seal the ureter blocking the kidney.  The problem is that although the stent will bypass potential swelling, it also bypasses a valve that prevents urine from washing back into the kidney.  So when pressure in the bladder increases (Such as when you urinate) urine floods back into the kidney causing pain.  And when you have as much scar tissue in your kidney as I do it hurts even more.  However, it is better than a blockage so it is a necessary evil and just means that I have to take some pain medication to counter which also comes with its own set of problems such as drowsiness etc…

Well, that is it for me.  The stent comes out on Tuesday which is only two days away.  Until then, stay wellJ

Wednesday, April 17, 2013

Back to Hospital

Well, I have just got back from a wonderful two week break in the Gold Coast with the family which was great.  However, I know I am firmly back to reality as tomorrow I am back to hospital to have my kidney stone removed.

Now I just want to make a few points here.  First, this is nothing to do with the stem cell transplant I had last year.  This is a completely different disorder.  The HSCT process has been and continues to be a complete success.  Second, it is nothing to really be worried about as I am not.  My fellow cystinurics would know that unfortunately this is routine which is a good and bad thing.  Bad because it is routine. Good because I know exactly what to expect and I have come to fully accept it as part of life.

It has been so routine for me that I have gone about my everyday life in such a way that I have all but forgotten about it.  It is now almost 7.00pm and I still haven't packed yet.  I really am simply concerned about what I am going to eat for my final meal (as I am nil by mouth from midnight) and finishing this blog.

Now some may consider this a no no, but I do it anyway and that is tonight I'll stay up really late so tomorrow I am tired.  Why?  Well I am going to sleep because of the anaesthetic tomorrow anyway and I'll probably doze all afternoon.  If I sleep well tonight I'll be awake alight tomorrow night as the anaesthetic all but wears off.  That is really boring as there is little to do during the middle of the night in hospital.

Well, feel free to wish me luck.  I'll be posting in the next 48 hours to let you know how I went.  Stay well:)

Wednesday, April 10, 2013

Happy Birthday to Me!!!!!!

Yes today is my birthday.  My brand new birthday!  And today I am 1.  Not 41.  Just 1.  Alright it's not my real birthday but my new birthday.  Exactly one year ago today I had my Stem Cell Transplant and patients and medical staff alike consider this your new birthday.  Now being one for me is really quite nice and is a great excuse for me to pretend I am young again.  I don't think it would really fly on official documentation but in social situations (other than going to the pub) I think it is pretty cool.

However, just like a real one year old the last twelve months have been a real learning experience for me.  Every single day I have to relearn exactly what I am capable of as it is still increasing everyday, just like a real one year old.  The only difference is I am much more aware of what is happening.

So what has changed over the last twelve months?  The list is almost endless.  There has been so much improvement.  I guess the first thing to go was the nerve pain.  Almost instantly it disappeared, but it did return when my nerves started regenerating.  Fortunately it was easily treated with minor surgery.

Other more notable improvements are that I have started swimming further and faster, my balance has improved so much I have been able to ride a bike and I have started running.  Maybe I should do a triathlon.  But it is the little things that make a world of difference.  I can now sleep through the night without getting up to go to the toilet and if I need the toilet I have no trouble getting there. I used to have to crawl.  I can easily walk up and down stairs, I can unscrew my own bottle tops, I can kick the footy with my son and dance with my daughter.    Standing up for long periods of time is not an issue any more and I can walk much further too.  All in all it's way better.

On a completely different note you have probably noticed (if you are a regular reader) I have changed the look and feel of my blog.  I would love your feedback on what you think.  It has been over three years since I first started writing this blog and since then I have chalked up nearly four hundred posts.  I have really loved the way it looked but change is always good.  I have also had feedback saying the black on white is hard to read.

On a last note I would also like to wish my fellow patient and stem cell transplant recipient Cory Smallegan a happy birthday as he had his transfusion on the same day as me.  To Bob and Wendy who were at the hospital as the same time as us I hope you too enjoy your birthdays next week and just remember, from now on under my new formula for age I'm older than you both;)

Well that's it from me today.  I hope you have enjoyed reading it as much as I have enjoyed writing it and I will continue to do so for a while yet.  Stay well:)