BMA Results

We have good news and bad news.

My fibrosis has returned but it is treatable.

On Friday early, Doc Shoosenbootzen called to tell me the fibrosis had returned but we had several treatment options. We will start by reducing my immunosuppression drugs so that my new immune system  gets a good hold and kicks the fibrosis in the teeth.

I asked him how sick I would get and he thought not at all.

I asked him about future transplant again, and he said there were lots of other steps in between that would be successful, including taking just the lymphocytes from the donor cells as a first case. 

Since I was out of questions I asked him what he thought Bluey's questions would be.

"Is this a disaster?....NO

Can Doc Shoosenbootzen fix this?.....YES!"

So we have a a new blip in our road to peace and fulfilment (okay that sound pretentious to me) 

How about on our road to a good book on the deck with a cold oaky Chardy!

More later

Chris

Well no news is good news right?...right?

Well we did the BMA (Bone Marrow Aspiration in long form). Well we did is a bit inaccurate I lay there with my foam Christmas antlers on and Doc Shoesenbootzen did the work.
I have a deal with the doc he can run whatever painful test he wants as long as I'm not there! Sedation is the answer.  Apparently I talk like crazy and ask for more sedation but right from the beginning I didn't remember a thing. I guess it hurts and I tell him but I have  no memory of it at all!
I also have no memory of the photo he had the nurse take with him jabbing me and me wearing those antlers. This could be true or not.
But now to the boring bit. I still haven't heard the results.
Merry Christmas

It all seems vaguely familiar

The smells, of the antiseptic the bright lighting and the murmur of voices in the hallway. It's looking like I'm about to get a steel spike drilled into my hip bone again.

Well campers Bluey and I are here at Shoesenbootzen' clinic to get my regular treatment but also to get a bone marrow aspiration... the aforementioned spike in the butt. My bloods have had a larger then liked number of weird under done red cells and lower than liked good red cells. Hence the need to drill into my marrow and extract a bit to look at.

More later after the looking is done.

Update: its past the fourth anniversary!

Hey ho campers

Its been just over 4 years since I had my transplant. So, thought I would update you all and share what's going on now.

I still go to Brisbane every four weeks and get Intragam (blood product that has antibodies). I may not have shared, that since I get up to 4 peoples antibodies each month I am pretty healthly and have missed a couple of flus that Joyce got. I get a free pass!

Anyway I'm well although I'm still on immunosuppressants I'm down from 400mg/day to 50mg/day that's an 8th of what I came out of the hospital at.

I'm back to thinking I may actually get off the suppression altogether! But cross-bridge-when.

About 6 months ago I started noticing that I had an execema (sp?) type skin thing on a couple of fingers and a rash on my arms. I was thinking it was GVHD but NO! Its my brother's allergies. I've got Hay Fever too. Yay, boo, Yay, boo. Good because it means my new immune system is kicking in, bad because it itches and sneezes! I'm probably the first person to get excited by the fact that I sneeze when I cut the grass.

I may have mentioned in other forums that we bought a new house in July and we love it.

Things are going pretty good and Bluey is going great with her new Community Centre project. its actually got part of the roof on.
more later
Chris

Christmas 2010

Well its amazing to me that four years ago jsut before this time we were just back from a trip to Canada to "say goodbye' of course I didn't tell anybody that's what it was about. I had total confidence in Doc Schoozenbootz but I'm a bit practical and wanted to cover my bases. At this time four years ago I was just back from the hospital from getting my big giant spleen out in prep for my bone marrow transplant
     - Actually I've found out the more correct term is Peripheral Blood Stem Cell Treatment. but I digress
I'm doing great btw. and I'm getting ready to celebrate Christmas with family and friends in our new house.
Its a lot different this year.
Merry Christmas to all and to all a...
more later.
Chris

A long overdue update

Hi gang

I've been so remiss that maybe no one will see this post but since its more for me that you ...

Shoeszenbootsz says "everything is good, liver is good, kidneys are good, keep on this level of drugs, I AM VERY HAPPY"

yes isn't that amazing. As you know when he is happy I am ecstatic!

It's been a slow climb over the past few months and you know I don't notice the effects of this stuff but lately have noticed that I do seem to have a little more energy and pep.  Each 4 weeks we were getting 'there is improvement in the liver/kidneys but still not happy'  So you could have slapped me with dead fish and I would not have noticed when he said he was Happy!

Joyce is good. She is on a Wild Women weekend. I'm not allowed to know what that even means so ...

more later

Cleared for take off

Okay to recap: five weeks ago shoozenbootz  said my "kidneys are crap" yes a direct quote! A bit exaggerated but he made his point. No booze, lots and lots of water some adjustments to several medications and re test in a two weeks. See the previous post about the logic conundrum. Thanks Kirkie for responding. I did call and rebook the phone call and got him later.  He then said "still crap, slight improvement, retest in a week". I never did hear back on that one but last Friday I saw him at my treatment day in Brisbane and he said the were just crapish now. (My words) The levels of crud...creatine etc was still a little higher then he likes but the reduced immunosuppression has helped. Apparently the side effects are renal issues, high blood pressure, and glucose issues. All of which I have. It didn't help that the normally prescribed blood pressure tablet had been reduced the month before because it made my ankles huge. They are very nicely turned not thank-you very much.  The side effect of lowered immunesuppression are, in my case,  rashes on the inside of elbows and kness, tummy upsets more often, a tickle in my throat.  All this can easily be controled so its all good.

Anyway both Bluey and I were quietly worrying that he was going to put the kibosh on the Paris trip. But my kidneys have come through! He specifically said have a good time!

We are packing like mad for takeoff on Thursday!

Guess who's got lunch at  l'Tour Eiffel booked!


more later