I'm more than 5 yr out from bone marrow transplant. See other blog for the rest

Saturday, April 19, 2014

Life's little trails or trials?

I'm trying to be lay back but I'm getting more and more pissed off about my leg.

I've been having more problems with gout and my kidneys. Compounded by high blood pressure. I went on meds for the BP about two months ago and I've had two really bad gout attacks in my knee in the past 6 weeks. To the point where I'm on Prednizone you know that steroid with the side effect of divorce! I get real rangy on it.

The good news is that it's a 6 day course so the end is insight. But before the Prednizone I was on Endone for the pain and this second time it was not even cutting it fully. I had a couple of "Joyce, just get an axe and cut it off days.".
This is all complicate by my kidneys "leaking protein into my urine" and having to have ultra sounds on my kidneys and the veins. And last time I saw Doc Shoozenbootzen. He whisked me off the the ima going place in the. Basement to get a Doppler ultrasound of my legs to rule out DVT! I looked at the tech and he looked at me and I said "we have been hear before" he said "yeah it was the other leg leg last time" that was last year when I started having gout issues. Anyway no DVT. Just giant leg.

I'm also getting my local GP to get an MRI of my knee and she agrees that maybe I do have some miniscus damage and that provides a site for the crystals (uric acid..gout) to attach.

And I have an appointment with a dietician to sort out gout menues because the internet would have me eat nothing at all.

I suspect this all has inter related Interactions and I'm sure we will find out wha5s what soon but in the mean time it's a pain in the knee!

Even when I'm better I'm trying to rest the knee and get it up to reduce swelling so the yard needs cutting and the retaining wall under the house is not advancing. Frustrating!

Well this was quite a pity party, whine Fest wasn't it!

This has been keeping me from re launching Big Knock.

But I have been mentoring a lad in year 3 who is a bit of a handful and I've been reading with two year 4 groups as part of use Mentoring Program at the neighbourhood centre. And I'm the logistics leader to a gro,up of self help Leukamia patients and their spouses. We aren't official with the foundation yet so I call it the Not a Support Group.

More later
Chris


Sunday, January 19, 2014

Catch up

I have been reminded by my pal Gayla that I need to be more up to date with my posts.

So I have have been back to Brisbane to see Doc Shoozenbootzen and to my local GP and we have been on a kick to get my kidney, gout, swelling, eczema, itching and liver balanced and working properly.

So my swollen left foot (for the past two months) has started to go down. Usually its downish in the morning and blows up during the day. But now its only blownish uppish  a bit later in the day. And I'm started on a drug to help my gout but it puts a bit more pressure on my kidneys so we have to start easy but I have not had any of the possible side effects.

I'm going to try to stop going on about the details of my side effects, gout, eczema, swelling etc. because the main issue is that my bone marrow has shit in it and that is slowly going away, we think. I'm worried that these little troubles are keeping my from the the great exultation I should be feeling at being alive and getting better in the bone marrow department.

I'm also going to, for a moment, reflect on the 37 pages views I got from the Ukraine. hmmmm.

More later
Chris


Tuesday, December 3, 2013

feet who needs 'em

We are at the end of our three week holiday to Canada and the US. I have spent most of th time trying to get me left foot to coooperate.
first I had gout from dehydration and them i was walking funny and my achellies tendon flared up and now that those are better I'm dealing with the tenors/connectors? on the outside being tender. but they are healing and just stiff sore not ripped sore so as soon as get home to my Physio the Queen of pain. (she's just a tiny thing but sheesh can she hurt me). I'll be right in a few days. then its back to the  diggin holes and filling them with concrete.

more later
Chris

Tuesday, November 19, 2013

oops sorry this is late.

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

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


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

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