i have been feeling a few symptoms of not filtering out the shit in my blood. Still mild but I notice them. My blood pressure is getting back in control but that’s seems to be harder then it looks because a bunch of common blood pressure drugs also screw with kidneys...but it important cause high BP can cause damage to your kidneys!
Good news is I’m off the powdered styrofoam that reduces potassium and that is staying down and stable.
I’m in Brissy for two procedures. The first was yesterday and that was so Doc Shoozenbootzen could take a new BMA and then use that to graph my results on a table of life expectancy. Then that data goes to my Blood transplant unit for a discussion on “am I a good candidate for a transplant”. That decision then goes to my new docs at the PA hospital where they do kidney transplants (the only one in Queensland). They then decide if I will be a suitable receipient of a transplanted Kidney. Then we can start looking at donors.
Meanwhile tomorrow I get a fistula in my left arm, as prep for getting dialysis. They fistula is a join (in my wrist) between an artery and vein the result is that vein gets bigger over two months to the point that it’s easy to get big transfusion needles into the vein.
Saw an article saying an artificial kidney is 2-5 years away from trials!
More later
Chris
Wednesday, March 14, 2018
Thursday, February 22, 2018
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
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
Thursday, January 11, 2018
Friday, December 22, 2017
Thursday, December 21, 2017
Wednesday, December 20, 2017
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
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
Friday, December 15, 2017
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
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
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