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AllanGardyne · Posted: Mon Dec 08, 2003 9:13 am Post subject: Good news and bad news

[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.]

Day 53: Good news and bad news...

Things have been a bit discouraging lately, so we've waiting, hoping for some good news to post. Instead I have a both good and bad.

I've been on a bit of roller-coater ride lately. My blood counts have been going down instead of up and some of my liver counts have been absolutely crazy - about 100 times normal. Even my cholesterol has gone from abnormally low to abnormally high.

However, fortunately I've managed to stay out of hospital, and at last things are settling down again.

The good news...

I was scheduled to have another red cell transfusion today, but I didn't need it! At long last the cells from the bone marrow transplant have started producing not only white cells and neutrophils but also red cells.

This is a major breakthrough. It's the final indicator we needed that the transplant is going to be a success. Hooray!

The bad news...

1. A dormant virus - CMV (cytomegalovirus) - has reactivated itself. So now 24 hours a day I'm carrying around a little pump which squirts an anti-viral drug into me now and again. With any luck, that won't be for long. The drug appears to be working.

2. Much more serious... Now that the transplanted bone marrow cells are strong enough to produce blood cells, they're also strong enough to recognize that they're not 100% compatible with my body (only a transplant from an identical twin can give you a 100% match).

The imported cells see me as "not-self", and have started attacking my tissues and organs. This is called Graft Versus Host Disease, and is very common in bone marrow transplants.

Graft Versus Host Disease can be either mild, moderate, serious or life-threatening. Here's hoping mine will be mild.

I've pink spots and blotches on my arms, legs and torso. The disease is also attacking the liver, resulting in the extremely high liver test results.

To counteract it, the specialist is giving me a high dose of steroids, which has caused a dramatic improvement in a few days. The blotches are receding and the weird liver counts have stabilized, and most of the high counts have started going down again.

The extra red cells aren't up in the normal range yet, but they're high enough to feed a bit more oxygen to my brain, making me feel better and give me the energy to make this post.

With any luck, the doctors will eventually be able to gradually reduce the dose of steroids.

The roller-coaster ride continues.
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Allan Gardyne
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AllanGardyne · Posted: Thu Dec 18, 2003 5:52 am Post subject:

Day 63: My health keeps improving steadily.

I'm eating well, going for walks, and my energy is returning.

I'm even growing hair on my scalp again - well, it's only baby fuzz, but there's a very pleasing amount of it. Joanna has looked closely and insists she sees colour in it, but it looks VERY pale to me.

My liver test results have improved every day for the past 10 days or so. The two most important counts, the bilirubin ones, are now safely within the normal range and the others keep getting better day after day. It's very satisfying watching those counts go down.

For example, the ALT, which hit a high of 2020 (normal range 5 to 40) on December 5, dropped to 612 about a week later, was 284 yesterday and is down to 245 today.

The weird liver counts could have been caused either by graft versus host disease, cyclosporin, or cytomegalovirus or all of them. The counts have improved since the switch to a different drug.

As the liver improves, the obvious symptoms of graft versus host disease - a rash in various places - have vanished. Also, the latest blood test showed no sign of cytomegalovirus. That's excellent news because although the virus is common and similar to flu, it can be very dangerous for transplant patients.

I'm now taking 42 pills a day - the prescribed medicines, a heap of vitamins and various supplements recommended by a New Zealand woman, Dr Tarlton Fraser, who has a PhD in how cells interact. We're taking them with the specialist's approval. Several of them are aimed specifically at removing liver toxins.

The specialist has been remarkably tolerant in agreeing to let us combine his usual medicines with someone's else's recommendations.

I'm delighted that the mix is working well. The specialist is very pleased with my progress.

Adding to the complexity of it all is an intravenous anti-viral drug to fight cytomegalovirus. The drug tends to destroy blood cells, so the nurses aren't worried by the fact that my red cells counts are fluctuating and trending down a little.

Fortunately, I've had my first 14 days on the anti-viral drug, and today the nurse halved the dose. Perhaps that will help the blood counts.

The steroids I'm on to fight graft versus host disease have boosted my appetite hugely, so you don't need to worry about my weight - it's going up. Joanna now calls me the "Eating Machine".

Now, I must get to work on the latest newsletter, which will be published tomorrow... Wink

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Allan Gardyne
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AllanGardyne · Posted: Wed Dec 24, 2003 7:52 am Post subject:

Day 69: I've just spent most of today at hospital, having a couple of transfusions of red blood cells because the counts have been dropping. That was disappointing - I'd been hoping I wouldn't need any more transfusions.

The good news is that my liver test results are continuing to improve. I'm feeling OK, just a bit tired, but I'm used to that Wink

It was fantastic arriving "home" (to our temporary home near the hospital) and reading the posts about the forum hitting the 1,000 mark for registered members, and reading about wonderful people adding links to AssociatePrograms.com to to their sites.

A big, big thank you to everyone who contributed to such a heart-warming Christmas present.

Joanna and I will be having a Christmas meal with a bunch of fellow Kiwis (New Zealanders) in Brisbane.

We'll have a good one. I hope you do to.

Allan Gardyne - AssociatePrograms.com

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AllanGardyne · Posted: Fri Jan 09, 2004 10:23 pm Post subject:

Day 86: The good news and bad news continue.

Good news first: My liver counts have continued to improve remarkably and several are now in the normal range for the first time in a couple of years or so. That's delightful to see.

The bad news: The anti-viral drug I'm taking is destroying my red cells and platelets - a common side effect. After all this time, it's disconcerting to see the test results numbers going steadily down instead of up.

I asked the specialist why, considering that there hasn't been any sign of cytomegalovirus for quite a while, he didn't just stop the anti-viral drug.

He explained that I'm taking two drugs that suppress my immune system to keep graft versus host disease at bay. Because my immune system is being weakened that way, if he stops the anti-viral drug, there's a strong chance cytomegalovirus will reappear.

So now he's gradually reducing the dosage of one of the immune-suppressing drugs. When that's down to a lower dose, he'll try stopping the anti-viral drug and see what happens.

Staying alive seems to be a delicate balancing act, these days.

When I expressed impatience with my progress, he pointed out that I'm doing a lot better than many of the bone marrow transplant patients.

I see patients in the day clinic who can hardly walk, others who go back into hospital for a few days every now and again, and some are being given platelet transfusions every day.

As he says, I'm doing a lot better than them.
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Allan Gardyne
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AllanGardyne · Posted: Tue Jan 27, 2004 10:01 am Post subject:

Day 103: I've successfully passed the 100-day mark, a major milestone. If anything bad was going to happen, it was most likely to occur in the first 100 days. Whew! I'm glad that's over.

Joanna and I went out and celebrated and I had a couple of glasses of bubbly - the first for a LONG time - at a nice restaurant. I not sure the specialist would have approved, but it felt jolly good!

My liver counts are all normal or near normal now, but the blood counts still have a long way to go. It's apparently going to be a long process waiting for them to improve.

The specialist has stopped some of the nasty drugs I'm taking and is reducing the dosage of others - so far without any ill effects - so that's very pleasing.

This week over several days I'm having extensive tests - such things as blood, skin, eyes, lungs, teeth, heart and an x-ray - repeating all the tests I had before the bone marrow transplant.

If the results are OK, we'll be allowed to go home soon.

Thanks for caring, my friends. Your messages of support mean a lot to me.

Thanks, too, for all your friendly helpful posts assisting other affiliates on this forum. You're all truly wonderful.
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Allan Gardyne
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AllanGardyne · Posted: Fri Mar 05, 2004 4:05 am Post subject:

Day 141: I had a little op today to remove the Hickmans catheter - another milestone on the road to recovery.

Joanna and I will be going home early next week. That will feel odd. We've lived in temporary accommodation near the hospital for as long as we have in our new apartment at Golden Beach. It will be good to get back to it.

I've started publishing the newsletter again. If you didn't receive your copy, please check your spam filters! AssociatePrograms.com is one of the good guys you let through. OK? Very Happy

Thanks again for all your support.
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Allan Gardyne
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AllanGardyne · Posted: Thu Apr 08, 2004 7:19 am Post subject:

Day 175: A major milestone today! The specialist told me I can stop taking the last of the prescribed medications, an anti-rejection drug called tacrolimus.

While very pleasing, his decision surprised me because my body has been showing a few signs recently of graft versus host disease, in which the transplanted bone marrow is trying to reject my body. It's nothing serious - just flaky skin on my face, and a rash in a place I wouldn't mention in polite society Wink

It will be very interesting to see how my body copes on its own without any prescribed medication.

Some bone marrow transplant patients need to take anti-rejection drugs for the rest of their lives. It will be wonderful if I don't have to.

Thanks again for all your support. I really appreciate it.
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Allan Gardyne
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AllanGardyne · Posted: Sun May 09, 2004 5:50 am Post subject:

It's more than six months now since my bone marrow transplant. I recently had a six-monthly checkup, three days of extensive tests - heart, lungs, skin, teeth, blood, etc ... all sorts of things.

I haven't received any results yet, but I'm sure they'll be OK. I have some minor signs of graft versus host disease, but nothing serious.

Joanna and I are leaving tomorrow on a three-week vacation. We're planning to drive slowly down the Australian east coast, staying in places we like the look of, ending up in Sydney, where we'll stay a while with Joanna's cousin, and then slowly drive back up north again.

We'll take our laptops with us but try not to use them much.

I'm thinking it's just about time to remove this health section from the message board. There's really no need for it now. My health isn't quite 100% yet and perhaps never will be, but I'm much better off than a lot of people. You don't need 100% good health to earn a living on the Internet, anyway.

Thanks again for all your kind messages of support. I really appreciate them.
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Allan Gardyne
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AllanGardyne · Posted: Thu Oct 28, 2004 1:55 am Post subject:

365-day milestone:

Hey! I've survived a whole year since the bone marrow transplant. Perhaps it's time to delete this health thread.

Whoops! I just remembered. This anniversary means we forgot our wedding anniversary - again. I'd better make sure we remember the next one - it will be the 25th.

I had a comprehensive medical checkup and things are looking good except for a few minor irritants.

My liver counts have returned to normal after being outrageously high(fantastic news - it means my body is getting rid of all the poisons they pumped into me).

My ferritin counts (high because of all the transfusions) are now in the hundreds instead of the thousands.

One disappointing thing is that my hemoglobin is hovering just above the level where a blood transfusion would normally be given. The specialist says it might take a year or two to return to normal.

I still have a little graft versus host disease, which tends to make my eyes gritty and my skin a bit flaky.

I keep learning new medical terms. I have mild oropharyngeal dysphagia, which is a fancy way of saying I sometimes choke on food. So I'm learning new exercises to strengthen my swallowing muscles.

My health is probably better than that of many people who visit this forum.
Joanna and I walk for an hour each day - sometimes more. I wonder how many of you folk are doing that!

I've just been re-reading the wonderful messages of support we've received over the past year. You're all wonderful, and I thank you from the bottom of my heart.

You can now safely turn to your attention to more important things. Smile

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Allan Gardyne
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AllanGardyne · Posted: Fri Mar 11, 2005 12:46 am Post subject:

Joanna and I walked up "the world's steepest street" (or so they claim)
in Dunedin, New Zealand, yesterday and today - http://www.traveljournals.net/pictures/23124.html

It took us 8 minutes yesterday from bottom to top.
7 minutes today Smile

All the best.
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Allan Gardyne
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AllanGardyne · Posted: Wed Oct 26, 2005 3:59 am Post subject:

It's now two years since my bone marrow transplant and all is well.

I've just had an extensive checkup and nearly all my blood and liver counts are now within the normal range. A couple that aren't are gradually improving.

The specialist told me to come back in 12 months! Smile

Thanks again for all your wonderful support.
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Allan Gardyne
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