Health updates from Allan and Joanna

Sat Oct 18, 2003 4:08 am

[Update June, 2006: Just in case you're wondering what this is all about. I had a bone marrow transplant in 2003 and ran this business from hospital for a while. I'm fine now. My wife, Joanna, wrote the post below. Allan Gardyne.]

Hi Everybody,

We've decided the best way to keep you all informed of Allan's
progress (hopefully!) is to start a new thread which will be
exclusive to these reports, from Allan when he's well enough and
from me when he's not. You can still post under Messages for Allan.

For those who want a quick precis, Allan has been dreadfully ill but
is now feeling a little better, although there may be a threat to his eyesight.

For those who want the whole story, you will be sorry to hear that Allan
has had a dreadful time. The nasty chemo had its wicked way with him
and for five days the poor chap was vomiting and in pain from his extraction.
One of the pre-chemo tests Allan had done was full x-rays of his teeth,
which disclosed a large previously unsuspected chronic abscess so he
had to have one of his lower molars extracted, while having multiple
platelet transfusions. In general he's been feeling absolutely rotten.

He's starting to feel a bit better now. Although he's very tired and weak,
but he is managing to eat a little salad and fruit now and keep it down.
He couldn't eat or drink at all for the first five days. His stomach cramps
have eased off. They were so bad he was vomiting with the pain - vile
poisonous dark green stuff - and because they were worse when he sat
up he spent most of the time lying down. Two days ago he had the transplant,
which is administered like a blood transfusion through the Hickman's line
in a vein in his chest. That was Day One, and they tell us that from the fifth
to the 12th day will be the worst, because of mucositis (painful ulcers throughout
the entire alimentary tract) and other unpleasant side effects. Terrific! We
of course are hoping the worst is behind us.

As if Allan didn't have enough on his plate, he had to have laser
surgery on his left eye yesterday. He had been complaining
of really bad eye disturbances (as opposed to the hallucinations
induced by the chemo and morphine) and they discovered
there has been a haemorrhage which in turn has led to two small retinal
tears. They feared it would lead to a detached retina if they didn't do the laser.
I told them my father had lost the sight in his eye after having laser
surgery and they admitted there are risks involved but feel the risk
of not doing anything is worse. What a choice!

So far the surgery seems to have gone well but it will be two or three
weeks before we know if the huge clots obscuring his vision are going
to clear. Unfortunately now he's seeing bright flashes in his other eye,
so those of you who are Christians, please pray that his sight will not
be damaged. Hope to have better news soon. :?

Joanna.
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Wed Oct 22, 2003 9:03 am

Hi Everybody,

I'm writing this in Allan's hospital room. Today is Day 6 after the transplant. Apparently days 5-12 are when patients take a turn for the worse and Allan had a very rough day yesterday but has improved to feeling "Yuk" today. His temperature is fluctuating as are his liver function tests. He had a liver scan yesterday and they couldn't find anything wrong. The eye specialist now says it could be months before his eye returns to normal. At present it's useless. And the other doctors say he could have a bladder infection, uric acid crystals caused by the chemo, or kidney stones. Allan doesn't care which - he just knows it's excruciatingly painful. He says he intended to write updates but feels too exhausted, and I intended to do them more frequently but have been too tired also.
Joanna.
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Thu Oct 23, 2003 7:11 am

Hello everybody, it's Joanna again.

Allan had a high temperature last night but they gave him antibiotics and it's nearly normal now. Apparently a fever is the expected way to go, so he didn't disappoint them. Also he lost a few handfuls of hair in the shower today, but he still has so much it's barely noticeable. My hirsutically-challenged brothers-in-law and father have always been very envious of Allan's great mop of hair, and one brother-in-law has asked Allan to keep the left-over hair for a wig for him! While I was writing this a team of doctors burst into the room like a whirlwind, rattled off a few sentences, the gist of which is that everything is proceeding as expected, and left just as quickly. They asked Allan how he was feeling and he said "Fine." I ask you! He is lying on the bed, absolutely exhausted, and tells them he is fine! Here's hoping he will be tomorrow.
Joanna. :)
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Sun Oct 26, 2003 6:27 am

Enough of the bad news, time for some good...

But first, I have to admit I forgot our wedding anniversary. Yesterday was our 23rd. Whoops! Fortunately, Joanna is very tolerant about my memory lapses.

I'm having a better than usual day today. The worse the day, the more the doctors. On bad days, up to five or six doctors and nurses cluster around my bed looking interested. Today, I had only one.

The doctors have cleared up what turned out to be a viral urinary problem. My liver is a little enlarged and liver test results are fluctuating but it's not causing any pain. Antibiotics are keeping under control any other problem areas.

Cheering me up enormously is the fact that the blood clots behind the retina of my left eye, which had the laser surgery, have begun to dissipate. It's a bit like looking through murky water containing swirls of black blood, but the murk is clearing gradually each day. That's good, because peeing into a bottle one-eyed is a bit tricky.

Today is Day 10. We're approaching the interesting period, around Day 14 to Day 28, where we find out whether the bone marrow transplant worked.

My sister's bone marrow, given to me like a blood transfusion, should by now have magically found its way into my bones. Exactly how it does that, no one knows, I've been told.

Next we get to find out whether that marrow is going to produce new blood cells, and whether her bone marrow tries to reject my body - what they call graft versus host disease. Some degree of that is common, with various side effects. What we don't want is a major rejection.

For severals days, my white cell and neutrophil counts - they're the ones that fight infection - have been steady at zero. The doctors talk confidently about when, not if, those numbers start to climb. That's what we're watching for now.

I was planning to make this brief, and here I am rambling on. I definitely must be feeling better ;-)
AllanGardyne
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Thu Oct 30, 2003 6:27 am

Whooohoo! At last some positive news. Today is Day 13 and Allan's neutrophils (those important little white disease-fighting blood cells) have at last moved upwards from zero to .04. It's not much, and the doctors have warned us that tomorrow they could be back to zero, but it is a sign that something is happening.

Allan's left eye is continuing to improve a little each day. He is now able to read the time as it ticks slowly by on the clock in his room.
He got sick of waking up in the morning and finding hair all over his pillow, so got the nurses to shave his head a few days ago. I have to tell you it was a huge shock for me. I saw a tall bald man in Allan's room and thought it was a new doctor, then realised it was my husband! He still has his moustache though.

He's dozing on the bed as I write this. He's severely sleep-deprived. It seems the nurses are in every few minutes night and day to do observations or change his drip or administer oral medications.

He's still finding it a major effort to eat. He has no appetite whatsoever and his taste has become acutely sensitive so that most food tastes far too strong.

Also, he has fluid on his right lung so they're doing X-rays every three days to make sure it doesn't develop into something sinister.

Thank you all for your good wishes and prayers.
Joanna. :)
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Mon Nov 03, 2003 6:09 am

A little bit of good news.

It's Day 18 after the bone marrow transplant and my white cell counts have moved up from 0.1 to 0.2. The normal range is 3.5 - 10, so there's a long way to go yet, but are least they're moving in the right direction.

My neutrophil count today was 0.04 (normal range 1.5 - 6.5).

I'm even more tired than usual today. I'm hoping that's because my body is putting its energy into creating new cells.
AllanGardyne
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Wed Nov 05, 2003 8:05 am

Unofficially, it looks as though the bone marrow transplant is going to work.

Because I was behind schedule with my blood cell production, the specialist who is overseeing the transplant told the nurses to inject me with Neupogen. I made the mistake of looking it up on the Net. Would you believe it's created by messing around with DNA and E.coli - bacteria that make you sick when they get in the water supply!

Anyway, the Neupogen seems to have given my marrow (well, I suppose it's really my sister's marrow) the jolt it needed. My white cells have jumped from 0.5 yesterday to 1.0 today (normal range 3.5 - 10) and my neutrophils have jumped from 0.23 yesterday to 0.53 today (normal range 1.5 - 6.5).

Officially, the doctors warn me that it's a long journey and there can be complications at every stage for several months. I'm on only Day 20 of a process that is never short of 100 days. However, the specialist is looking very pleased with himself.
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Sun Nov 09, 2003 5:33 am

Hello Wellwishers,
Joanna here again in Allan's hospital room. We're feeling very happy because over the past four days Allan's white cell count has jumped from 1.0 to 9.9 (normal range 3.5 - 10) and neutrophils from 0.53 to 6.97 (normal range 1.5 - 6.5). The docs stopped the cell-stimulating drug yesterday. Red cells and platelets are still not showing any sign of going up but they say they are the last to move. The doctors are pleased with Allan's progress but say there is a long way to go. He is still incredibly tired and weak. Just having a shower exhausts him for the rest of the day.
Thanks so much for all your good wishes, prayers, and participation in this forum. We do appreciate it.
Allan and Joanna. :D
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Fri Nov 14, 2003 7:56 am

Hi Everyone

A major milestone. I've switched from hospital to day clinic. The docs say I've made better than average progress.

It's only Day 28 of the 100-day journey, but I'm confident I've beaten this thing.

On my last night in hospital, I stretched out flat while dreaming and gave myself a hernia in the groin. All the poisons (technical term, used by one of the doctors) they've been feeding me have weakened my body so much that it's easy for things like that to happen.

Because of my low platelets, they can't operate to fix it, so in the meantime I'm on painkillers.

Oh well, just one more little challenge - I've become used to them :-)
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Sun Nov 30, 2003 1:59 am

Hello Everybody,

Joanna here because Allan is too tired to write. His morning shower is about all he can manage before being tired out and he drops off to sleep at the drop of a hat. That's in addition to the couple of hours he has in bed after lunch every day, and the early nights!

I'm just hoping it's a sign that his body is very busy repairing itself. At our urging, the docs eventually did a scan which showed a small hernia and a hematoma into the groin muscle, so that's what has been causing the severe pain he has been suffering.

However, it is finally improving and he is able to have short walks now.
He is very tired afterwards but that's to be expected.

He has to go to hospital twice a week for blood tests and intravenous
medication. His blood tests are improving but his liver function tests are
cause for concern. The anti-rejection drug he is taking appears to be
causing liver damage and the specialist has told Allan to stop taking it
for a few days until he can reassess the situation.

As well as that, Allan has lost nearly 3 kilograms in the time he's been at home despite my efforts to feed him up, and he has bruises under his eyes where he thinks he may have rubbed his eyes, despite his efforts to be gentle.

On the good side, he does have lovely smooth cheeks (though they're
getting very thin), and he hasn't had to shave for weeks. :)

Yesterday I asked him to dry the dishes and he said mournfully, "I thought it would eventually come to this!" I'd had a feeling he knew he was now capable of doing it but wasn't going to volunteer! Wives, take note.

We are so blesed to be able to stay in the Leukaemia Foundation units here in Brisbane. It costs us nothing to stay here, and there is good support available. There are about 20 units in this village which is set in lovely gardens of palm trees and gardenias. Everyone here is in the same boat so there is always someone else to talk to. Not that I've much time, between looking after Allan and trying to keep up with my part of the business.

Again, thank you for your support and good wishes and prayers.

Joanna.
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Tue Jan 27, 2004 10:04 am

Yippee! I've successfully passed the 100-day mark.

I've made a post in this thread:
http://associateprograms.com/discus/vie ... php?t=1765

Allan.
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