Subject: Re: [SECONDWIND] Ann's e-mail
   Date: Thu, 27 May 1999 00:32:09 EDT
   From: Gdwny@aol.com
     To: boopack2@bellatlantic.net

Gene I tried to send this to Secondwind but it was returned.  Colin has
changed his whole set up and I cannot send as normal to secondwind.  Will
you please do it for me?  Ann xx
From: Colin Bell <c.bell@dial.pipex.com>
To: Gene Downey <Gdwny@aol.com>
Subject: Ann
Date: 25 May 1999 16:22
Dearest Friends

As you can imagine it has been impossible for me to actually "tune in" to
your messages since Colin has left us.  But I realise that you must have
wondered what really did happen to take him out of this world.  Indeed as
most of you have said you had followed carefully our plight over this past
few months - with Colin's many hospitalizations.  However, Colin and I had
discussed many many times the possibility of not making it in time for tx -
we lived with that possibility and faced it (as best we could) but also with
the great hope that he would receive one and that he would enjoy good health
following it.  Of course the risks were great, even more so for him than any
other individual, and it is my belief that there would have been more
terrible tribulations and great pain for him ahead so God decided to free
him from the battle which he fought so courageously.  I know we wanted to
keep him - so, so much and I cannot imagine ever enjoying anything in life
again without feeling a very sore pang of regret that he is not there to
share it, but he did have a lot more drugs administered to him than most tx
patients and the amount needed with another tx would surely have burnt out
some of his other organs and I know he had a real fear of going blind.  As
most of you know Colin's quality of life was virtually non-existent, but he
coped with this so fantastically that it was an absolute joy to be in his
company.  It took a lot of care and vigilence to keep him as trouble-free as
possible but his Dad and I did this with all the love and devotion that any
parent would show their child.  The only thing we could do was help him in
his situation but we could not cure him of it.

After Colin had received 5 units of blood and got home he enjoyed a few days
sitting at the back door in the sun - he felt a lot stronger but still
needed nasal specs and the mask.  This meant two oxygen cylinders had to be
used at all times.  That week too he did not eat his usual snacks which he
enjoyed so much and the kidneys did not seem to have their usual output.
Sunday he seemed fine.  Monday 3rd May his breathing deteriorated and later
that night we admitted him to Belfast City Hospital.  They started him on an
antibiotic but said it was a mild infection.  This seemed okay because he
was sitting up and able to talk unlike the previous times.  However he
couldn't eat nor was he drinking over the next while.  We could not get his
oxygen levels at any level that gave him comfort breathing and no matter
what we did his saturations stayed high therefore carbon dioxide was
building.  We stayed morning and night with him.  On Thursday 6th May I
expressed great concern that he wasn't showing any improvement and suggested
several things like rejection, magnesium deficiency, I even rang Freeman
Transplant Hospital for their advice.  Nothing helped his breathing.  God
bless him.  The medical staff had already agreed on previous occasions that
should this situation arise - his comfort was paramount, so on Sunday
morning he was in a real state and I asked, and so did he, for something so
that he would be unaware of the difficulty in breathing.  He had been given
Medazalam by syringe the previous day (because they attributed his breathing
difficulty to anxiety - no way!) so they increased it and gave him some
diamorph which always puts him to sleep for about 4 hours.  Colin knew we
were there but he could not open his eyes.  All he could eat was ice-cream
and little sips of water off a spoon.  Then there was the difficulty of
getting his cyclosporin into him.  So all medication was stopped but he
never came to.  And for the next 2 days all we could do was keep him
comfortable and love him and hold him until he just stopped breathing on
Wednesday morning at 11 minutes past 6.  We could not believe it.  Although
we were relieved he had died so peacefully.  But it is the most heart
rending thing ever.  Nothing could ever be worse. I know some of you have
gone through this losing a son or daughter too.  We were just totally numb
and Maurice and I just went down to the little church in the hospital and
sat there totally stupified and in total disbelief.  Colin used up a lot of
miracles over this past two years but I still had room for one more.
Although I faced the fact that he may not get tx'd, and so did he, and we
told each other how much we loved each other and how I could never ever be
happy again if I lost him, the reality is totally different.  And see two
weeks later - it is even worse.

We have been overwhelmed with cards, letters, callers and messages of
sympathy from everyone including yourselves.  Thank you so much for writing
to me here because I just could not face going into his room to check the
internet.  Strange thing is - this time in hospital was the one time when I
just took it for granted he'd be home in a few days whereas all the other
times he "looked" so bad that it was a miracle he pulled through.  But for a
wee while I felt cheated - it had just "snuck" up on me.  But there were a
few things completely different - not eating, not drinking, and no
regulation in breathing - but I was looking so hard for solutions that I
overlooked the obvious.  Just as well maybe because Colin would maybe have
been frightened by the panic.  As it was things just moved along smoothly
and the medical staff dealt with it when pushed.

I must say, and I have had many resons to be unhappy with hospital
procedure, that they fulfilled their promise and Colin was kept in the
utmost comfort - something which will help us all live with it.  I must also
say, although Colin's Dad is not a computer fanatic, therefore you do not
really know him, but he gave 100% in the care of Colin also.  He wanted for
nothing - only good health.  And in you all he found the soul mates which
kept him afloat and with whom he could share every fear and frustration.

The next bit gives me the greatest joy and I know it will you too - Colin
was committed to the Lord, in his younger days as a teenager and this vow
was refreshed just before Christmas again.  His faith was very strong and he
experienced God's helping hand on many occasions.  Although he suffered so
very much in physical pain - he never ever said it, and his life touched so
many people.

On the day of his funeral the Church was full and the minister spoke so
wonderfully of him because he had been with us too every step of the way
through his illness.  God saw us through that day and I try to remind myself
that he is away from his struggling.  Sometimes even I thought it was cruel
to keep someone alive in such a state.  But we had many blessings and his
last two years post tx have been troublesome, granted, but very rich too.
This sounds morbid but it isn't - he was like an angel lying at home for the
2 days before the funeral and everyone who seen him kissed him and stroked
his hair he was so lovely, with a little smile on his face - he is at peace.
His hair was jet black, short and shiney and he had not lost weight or
anything he was about 12 to 13 stone.

I can only thank you for being there for him and for me - your support has
been magnificent.  All I can ask and I know he would want this - is that he
will be remembered by you all.  I am sorry he has "left" your little group
but he has joined the others now and they will watch over you all.  I detect
quite a bit of depression in your correspondence with each other and I just
want to remind you so many people depend on you and your strength to carry
them through.  Colin "didn't give up", and I will leave you with the verse
we had on his obituary, it is from the Bible , the book of Timothy,

"I have fought a good fight, I have finished the course,
 I have kept the faith ......."

He would expect you all to do the same in spite of many difficulties you
will encounter.

Gods Richest Blessings On You All,
Love from Ann