My DonorBro pointed out to me recently at the wedding of my sister that I have left you all hanging. My apologies.
I got the results from my second MBA since we think there was a change and the second confirms the first that my fibrosis is going towards remission! More reduction in the fibre structure in my bone marrow so last BMA was not a fluke. I have how ever put on a few kilos AND my blood pressure is up and I have been ordered to my GP to enact a plan to fix it. I think I can see where this is going and it is not good for this sweets loving boy. I have already cut out beer because it gives me gout and now they are going to put me on ..... A DIET!
I'm going to get back under the house in a big way when I get back and take care of this with reduced food and more work for a couple of weeks then see the GP.
Anyway we are in NorAm again for a wedding in Edmontoon and this week in Calgary and Next in Palm Springs and three days in The Magic Kingdom then I turn back in to a dwarf and finish all the retaining walls so I can get my final permit for the new music room under the House. I have invited a ton of new extended family to visit us in Australia and lots have started planning so I want the work finished so the fun can begin. Seriously who's kidding Who here, I'm ALWAYS having fun. Its in our motto ChornyOlinTours: Finding the fun in the world.
More Later
Chris
Tuesday, November 19, 2013
Friday, October 11, 2013
A funny thing happened at the clinic today, actually many funny things
So first off Doc Shoozenbootzen tried to avoid doing my BMA (remember last two times he has hurt his shoulder because my bone is so scarred from....doing BMAs.) He came by and said I need lunch first and Joyce suggest the med student with him looked strong and he announced the I have the hardest ass in the world! Then as we were waiting for the procedure the nurse brought in the blood results and Joyce got this strained little voice and said your neutraphils are down to .6. the nurse froze, I froze.
------remember people Netraphils are the big infection fighter. under 1.0 you are locked away in an airtight room to protect you. Normal level is 1.2.
So the silence lasted a couple more deep breaths and all three of us said " Are those results verified ! And we started talking about reason this could be...have I been sick recently, my skin has been more reactive lately, Why are these basocells way high as well. Joyce asked if we were even going to do the procedure with no neutraphils.
So the Kaiterer went off to see the scientist and came back with a smile and a scowl (yes I know its tricky to have both at the same time). Apparently the scientist said "oh yeah we thought that was way off so I did a visual scan and the real deal is way different", Neutraphils at 6.58 and the basophils down to normal. He said "we usually reprint the sheets for you with the revised levels but we forgot". The Nurse asked if we could get it now "cause we have a few heart attacks going on!"
So when the Doc came in Joyce handed him the original sheet and asked him if he thought there were any issues. He paused about half a second (yes that is not hyperbole he is clever and fast), and he said "that's wrong. The basophils are the giveaway". So we looked at the real sheet and I have normal everything except the weird non important ones that are off because I have no Spleen (newbies note: Go back to December 2006 to see about that giant sucker coming out).
So we flipped me over and he prepped the left hip... at this point I succumbed to the dazzle and don't remember any more but it was reported to me that it was way simpler and easier and I can report that it seems to have left me less sore as well. Bluey reported that there was way more aspirate and it covered way more slides and that the Doc said that it was easier to get the aspirate out. That means, unofficially, that I have less fibrosis. Yes!
We won't get results until next 8/11/13 so cross your whatevers until then.
more later
Chris
------remember people Netraphils are the big infection fighter. under 1.0 you are locked away in an airtight room to protect you. Normal level is 1.2.
So the silence lasted a couple more deep breaths and all three of us said " Are those results verified ! And we started talking about reason this could be...have I been sick recently, my skin has been more reactive lately, Why are these basocells way high as well. Joyce asked if we were even going to do the procedure with no neutraphils.
So the Kaiterer went off to see the scientist and came back with a smile and a scowl (yes I know its tricky to have both at the same time). Apparently the scientist said "oh yeah we thought that was way off so I did a visual scan and the real deal is way different", Neutraphils at 6.58 and the basophils down to normal. He said "we usually reprint the sheets for you with the revised levels but we forgot". The Nurse asked if we could get it now "cause we have a few heart attacks going on!"
So when the Doc came in Joyce handed him the original sheet and asked him if he thought there were any issues. He paused about half a second (yes that is not hyperbole he is clever and fast), and he said "that's wrong. The basophils are the giveaway". So we looked at the real sheet and I have normal everything except the weird non important ones that are off because I have no Spleen (newbies note: Go back to December 2006 to see about that giant sucker coming out).
So we flipped me over and he prepped the left hip... at this point I succumbed to the dazzle and don't remember any more but it was reported to me that it was way simpler and easier and I can report that it seems to have left me less sore as well. Bluey reported that there was way more aspirate and it covered way more slides and that the Doc said that it was easier to get the aspirate out. That means, unofficially, that I have less fibrosis. Yes!
We won't get results until next 8/11/13 so cross your whatevers until then.
more later
Chris
Friday, August 9, 2013
Still trucking
What does chromosome 13, clones, Karotypes and16 of 22 cells not dividing properly have to do with me? I don't have a clue either!
Doc Shoozenbootzen put my results up on his big screen and we looked at my rsults from BMAs past. Before my transplant I had no deleted 13 but when we did the BMA in November of 2012 when my fibrosis came back, there it was (wasn't) and we only cheecked 2 cells this last time so we need to keep an eye on it with a FISH test at the next BMA. The bma at the recourrence also showed the 16 of 22 cells not dividing properly. So we need to look at THAT.
I know! WTF I just focused on the blood results that are STILL normal and ignored the rest. His mnner was 'things are great' and maybe this is a good time to tottally confuse the Patient. There's going to be some serious googling in the next few days. I'll fill you in when I get it sorted.
Yesterday was my birthday and we talked about how we can starting planning for what our future might be like. I hadn't realised I had been holding my breath for two years. Any way we are finsished the inside of the new room under the house and our first event is going to be Barnett Road movie night. Then some house concerts We think and maybe some house guests, we hope.
more later
Chris
Doc Shoozenbootzen put my results up on his big screen and we looked at my rsults from BMAs past. Before my transplant I had no deleted 13 but when we did the BMA in November of 2012 when my fibrosis came back, there it was (wasn't) and we only cheecked 2 cells this last time so we need to keep an eye on it with a FISH test at the next BMA. The bma at the recourrence also showed the 16 of 22 cells not dividing properly. So we need to look at THAT.
I know! WTF I just focused on the blood results that are STILL normal and ignored the rest. His mnner was 'things are great' and maybe this is a good time to tottally confuse the Patient. There's going to be some serious googling in the next few days. I'll fill you in when I get it sorted.
Yesterday was my birthday and we talked about how we can starting planning for what our future might be like. I hadn't realised I had been holding my breath for two years. Any way we are finsished the inside of the new room under the house and our first event is going to be Barnett Road movie night. Then some house concerts We think and maybe some house guests, we hope.
more later
Chris
Sunday, July 21, 2013
Great news!
Somehow that title still isn't big enough. We Skyped with Doc Shoozenbootzen on Friday to get the results of my latest Bone Marrow Aspiration BMA.
" The Fibrosis is greatly reduced" " There is still Fibrotic tissue but that's may be evolutionary"
So the treatments may have worked back to the Interferon but they just took a lot longer then expected? Don't know for sure.
more later when the blogger software is working better.
Chris
Thursday, June 27, 2013
Sorry I've been doing things other then blogging.
So my last blood test was two weeks ago and I was 131 which is still in the normal range. That's amazing since I haven't been in these areas for 18 months. I last reported 134 and then a week later it was 131 then 125 so this report of 131 reverses that trend downward. I feel good not out of breath so I'm guessing I'm good. I haven't had a blodd test more recently because I am in Canada visiting family. I fact we had dinner with my Donor Bro, his two sons, his daughter and her boyfriend. It was very good but my nephews tower over me and have turned into men now.
We had a wonderful time in Kelowna where we caught up with great supporters Jim & Irene Cronin. I emailed back and forth lots with Jim when I was in the hospital getting my marrow swap. He had good info about physical fitness and other stuff and generally just kept me from thinking too much. We got to hear how their kids and grand kids are doing and caught up a bit about old times as Jim and I were pals in High School.
Tomorrow I get another go at my nephews and nice
(yep its a happy accident but she is a nice niece) and we get to have brekkie with Mike and Gayla then off to the Mickey Mouse wedding of the century in Seattle.
I feel fine except for my blasted foot had gout. That's gone but I was limping so bd I screwed up the Achilles tendon. It is getting slowly better, but.
more later
We had a wonderful time in Kelowna where we caught up with great supporters Jim & Irene Cronin. I emailed back and forth lots with Jim when I was in the hospital getting my marrow swap. He had good info about physical fitness and other stuff and generally just kept me from thinking too much. We got to hear how their kids and grand kids are doing and caught up a bit about old times as Jim and I were pals in High School.
Tomorrow I get another go at my nephews and nice
(yep its a happy accident but she is a nice niece) and we get to have brekkie with Mike and Gayla then off to the Mickey Mouse wedding of the century in Seattle.
I feel fine except for my blasted foot had gout. That's gone but I was limping so bd I screwed up the Achilles tendon. It is getting slowly better, but.
more later
Thursday, May 16, 2013
Who's the best blood maker on the Planet! Just saying...
I just found out that, here in the 21st week without transfusion, my red count is 134. That's normal and I haven't been 134 in over a year. I feel pretty good.
Saturday, April 20, 2013
More of the same...all good
So it's been 16 weeks since my last transfusion.
Still a mystery but no ones talking about it any more just "your bloods are excellent" then on to other topics. I, on the other hand, would like to know why.... It's the geek scientist in me I guess. I just have to be happy with "Every patient is different...".
So I got my third batch of DonorBro cells; this was x times 9 concentration.
I have a cold, the second in 4 weeks and I had gout last week but nothing connected to GVHD.
----- pop quiz :What does GVHD mean? Yes that's right Graft versus Host Disease. Where the new immune system in this case bolstered by the Donor Bro's Lymphocytes attacks my own body because it sees my body as foreign to its self. Also in this case we hope that the immune system will rear up and attack the fibrosis inside my bone marrow. ------
So no sign of that yet.
In unrelated news the downstairs addition has plumbing roughed in and electrical due next week. Plaster boarding the following week then water proofing, tiling, painting, final fit of elex and plumbing and its done.
More later
Chris
PS I just miss spelled my name hris and it auto corrected it to Harris not Chris weird eh?
Still a mystery but no ones talking about it any more just "your bloods are excellent" then on to other topics. I, on the other hand, would like to know why.... It's the geek scientist in me I guess. I just have to be happy with "Every patient is different...".
So I got my third batch of DonorBro cells; this was x times 9 concentration.
I have a cold, the second in 4 weeks and I had gout last week but nothing connected to GVHD.
----- pop quiz :What does GVHD mean? Yes that's right Graft versus Host Disease. Where the new immune system in this case bolstered by the Donor Bro's Lymphocytes attacks my own body because it sees my body as foreign to its self. Also in this case we hope that the immune system will rear up and attack the fibrosis inside my bone marrow. ------
So no sign of that yet.
In unrelated news the downstairs addition has plumbing roughed in and electrical due next week. Plaster boarding the following week then water proofing, tiling, painting, final fit of elex and plumbing and its done.
More later
Chris
PS I just miss spelled my name hris and it auto corrected it to Harris not Chris weird eh?
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