Big decisions this week

Well my leg infection is well and truely cleared up.
Doc Shoozenbootzen saw me last week and my blood cancer is not in remission but is totally stable, I’m making all the blood  cells I need.
I feel pretty good with energy and no pain.

My estimated GFR (a number on the blood chemistry results which equates to perecentage kidney function) is  hovering  between 11 and 13 and has been for steady there for a bit.

I’m told that as long as I am above eGFR of 5 and have no problems I can stay off dialysis.

But its time to get ready.

I decided to get a fistula in my arm to aid getting Hemo-dialysis as a back up to my desire to get Peritineal dialysis. But I’m probably not going to be eligible for PD as my tummy is fat, I have a cesarian scar (from removal of my giant spleen (see earliest posts)). So I’m going to prepare to start HD -Self care. That’s  where you do the work (prep water, thread machine, purge, start-up, insert needles etc yourself but do it at the renal Unit. This will be followed up with home HD unit installed at our home if two other things don’t happen.
1. I turn out to be able to do PD
2. I don’t get a Live Kidney Donor.

Yes I’m looking at long term loan of one of your Kidneys.

It will be a 6 to 9 month vetting procedure.  My Doc will do another bone marrow aspiration (and those  of you who have been playing along will recall how much I love this procedure (NOT) then he will take it to the Royal Hospital Transplant team to create an opinion as my my viability as a recipient of a new kidney. Then that opinion will be shared with the PA Hospital Kidney team. If it’s a go at that point the the potential donors will have to “worked up” by their doctor, apparently its not invasive but it is exhaustive. The results of the these tests will be correlated to my results and a determination made as to the viability of a successful transplant will be made.

Long shots.

In the mean time I’ll be on HD as needed. But I asked when the Nurse Practitioner thought that might be and she was hard put to give me an answer but did say that as I’m close to needing it if I get  Pneumonia, a bad flu, a bad infection in my leg, etc I will be getting emergency dialysis!

I’m going to be even more careful about my health but it’s looking like I’m tied to Hervey Bay  soon.
The cute red head and I are planning a trip to to Tassie maybe to Make hay while the sun shines.

In the meantime I am scheduled for a blood test to find out if I can take the Hep B vax that I’ll need, and I’m waiting in my appointment to get my fistula surgery. Did you know that it takes two months after the surgery to let my vein grow larger before they can use it for HD?. And that as the flow grows in the vein its sets up turbulence in the vein and that produces a ‘buzz’ that can be felt as you feel for the  pulse!!!

More later

It’s always something isn’t it

I’m free

Still waiting

Well that was unexpected!

I'm in hospital.

Yep, didn't see that one coming did you? Neither did I. I thought doc Shoozenbootzen was going to praise me for getting all that water out of my ankles and for tackling the skin problem. The issue was that my potassium was way to high (can lead to heart problems) and my creatin was way high. So I'm in getting hydration and and lots of resonium to lower my Potassium.

I'm not sure if I have spoken on the delights of ResoniumA powder. It's like drinking sand! It's ploystyrene with an active ingredient that sludges through your body snaring up Potassium ions and then carrying them out the back door. I was doing two shots a week now I'm doing four A DAY!

Hopefully I'm not here long. Went in last night (Tuesday) and may be out on Thursday. Gene was with us so had to go back on the train last night. Joyce stayed in the hotel across the street. She has booked another night. Just waiting and seeing. Could be a crappy Christmas but hey the food is not too bad.

More later
Chris

Things are better

The extra water tablets have worked my legs are regular size and my skin has shrunk back down to regular size. I got Dermatoolguy appointment in Brisbane las Tuesday and they aren' sure what the cause. They did three more punch biopsy to see if they can find out but they prescribed some extra strength steroid cream has is working a treat. My skin still itches fro time to time but not fiercely like it had been. I'm already on the step down steroid cream they gave me to follow the extra stuff.
So things are quite a bit happier around here now. Still reacting a bit when I get too hot and sweaty but oh well.

more later
chris

"You look flat today, do you want a referral to a Psycologist". " No thanks doc I'll just blog"

Okay more stuff and I'm going to do a whiny first part but DO NOT respond till you have read to the bottom.

Catch up: saw the Nephrologist (Kidneys) doctor on Tuesday at then had my treatment and saw the oncologist later that same day. Saw my GP today.

Its a bit longer than this and more detailed but basically. I'm not going dialysis early in the new year, more like this time next year. But I need to get my plan set up so I'm being referred to the local hospital renal unit to get started but I'm Cat. 2 , so I'll get seen between 30 days and 90 days from now. It's to get my access methods sorted, my veins mapped etc etc.
I'm now down to a calculated percentage of kidney function of between 13 and (20 % -okay the doc said 16 % but since its just a rough guide I prefer to be in denial).

My chemistry results were static since last month so no more loss so thats good. My cancer is going just Jim dandy thank you very much, stable with all my cells being produced. (My problem is that I make way too many of the in-between immature blood cells and not enough real ones. Its not a problem really as I just pee out  the unused ones......oh wait. I'm having trouble with my peeing system.
My kidneys are Still holding in the creatine (bad stuff) and letting go of too much albumin/protein (the good stuff).
Oh and guess what keeps the liquid inside my veins....Hydroscopic pressure that comes from the Albumin etc. so Im retaining fluid in my hands and legs. So I've up my lasic express pills to four a day.  I call them that because when I suddenly feel that I have to go....I've got to GO NOW!

I'm having problems with cramps in the night so the mag has gone up 6 times,

But here's the big thing and its really the smallest thing but I think you'll agree that its its keeping me flat.

I've developed a rash! I've always had itchy feet and hands but now Its on the back of my calves, knees, elbows inside arms, back of upper arm, and rib cage- both sides. Its an overall slight itching like sweating in a wool sweater, type but from time to time (multiple times a day) one of those areas will get "set off" by a scrape with end of plastic bag, brushing against a rough fabric, my own sweat, etc. then its gets to richter scale itchy, I can't help myself and I scratch. Then its game over and it explodes into raised mini welts. Usually i scratch in my sleep and I'm up several time night re washing , re creaming and re cortozone creaming. During the day I'm usually able to resist and I get to the cort cream to kill the flare up but sometimes like at the doctors today I forgot to bring it so I'm totally doing an internal dialogue about not scratching so I guess that makes me flat!

I'm having to reduce hard work as my sweat sets it off, I'm showering at least twice a day and having a bath in Alph kerrie once a day. I'm gong through gallons of body lotion but I'm getting some things done. Joyce is having to gurnie the deck as I can't and i'm barely able to get to town do the shopping and get home before I have to grease up some more.

Okay here's the second part. I feel better for just laying it out in this blog. Please DO NOT respond here or on Facebook with any comments about 'poor you'. I'm fine I'm just itchy.

If any thing you can write about why your day sucks! Yes tell me why you are way worst off then me!
Its all subjective anyway, so we can comfortably go off after and think to our selves "that WAS bad but I'm still the worst off. Its a Win win. I get amused. You get to get something off your chest. See it was working there for a minute i didn't feel itchy until I said chest.

Or you could just session d her or face book with a single typed   .  Its a dot, a period, a full stop. and it just means I hear you bro.

I have to sign off now as I was itch free until my right rib cage flared and now I'm off to the creams.

More later
Chris