Saturday, October 20, 2018
Friday, October 19, 2018
Tuesday, September 18, 2018
Monday, September 17, 2018
Another turn
Yep I’m in St Stephens Hospital. Checking my heart to had a high heart beat and it’s irregular.
Edit: It’s arterial fibrillation maybe, or could just be an electrolyte balance thing. If it’s AF, I have to take meds.
Edit: I was at dialysis and it it ended with me having a weird feeling and boom . I’m taxiing across the street
Edit: I’m going to be another night as they haven’t paid for the admission with just one night. Or it could be that I can’t see the specialist until tomorrow night. At least I get to order my own food! Thanks everyone I’m comfortable the food was okay. No pain slightly less weird feeling so should all be good.
Edit: It’s arterial fibrillation maybe, or could just be an electrolyte balance thing. If it’s AF, I have to take meds.
Edit: I was at dialysis and it it ended with me having a weird feeling and boom . I’m taxiing across the street
Edit: I’m going to be another night as they haven’t paid for the admission with just one night. Or it could be that I can’t see the specialist until tomorrow night. At least I get to order my own food! Thanks everyone I’m comfortable the food was okay. No pain slightly less weird feeling so should all be good.
Tuesday, September 4, 2018
Got my letter
first off the report:
Had a bit of a turn in the chair last Wednesday night. They had thought I might be a little heavy with water weight still, so they thought to challenge down to 87 kg. But I was faint a t the end and had a blood pressure of 84 over 24. But lying flat and a sip of water fixed me up. So my dry weight has been set at 87.5!
I’m off ALL blood pressure meds!
4 weeks ago my plattlettes were up to 875 that’s higher then it’s been in 20 years. Those of you playing along at home will recall how this all got started with high platelets on a blood test in 1989! So two weeks ago doc shoozenbootzen put me back on the first chemo I ever had. Should be okay but it’s a puzzle as to why they are up. On my way to see the doc today and we’ll see if they have come down.
I got the letter from the PA hospitals in. Risbane, the transplant unit! In October I’ll go down to talk about getting a transplant. Still early days but I guess the tests went okay.
More later
Chris
Had a bit of a turn in the chair last Wednesday night. They had thought I might be a little heavy with water weight still, so they thought to challenge down to 87 kg. But I was faint a t the end and had a blood pressure of 84 over 24. But lying flat and a sip of water fixed me up. So my dry weight has been set at 87.5!
I’m off ALL blood pressure meds!
4 weeks ago my plattlettes were up to 875 that’s higher then it’s been in 20 years. Those of you playing along at home will recall how this all got started with high platelets on a blood test in 1989! So two weeks ago doc shoozenbootzen put me back on the first chemo I ever had. Should be okay but it’s a puzzle as to why they are up. On my way to see the doc today and we’ll see if they have come down.
I got the letter from the PA hospitals in. Risbane, the transplant unit! In October I’ll go down to talk about getting a transplant. Still early days but I guess the tests went okay.
More later
Chris
Wednesday, August 8, 2018
Sunday, June 10, 2018
Tuesday, June 5, 2018
Saturday, June 2, 2018
Friday, June 1, 2018
Thursday, May 31, 2018
Wednesday, May 30, 2018
Tuesday, May 29, 2018
Thursday, May 17, 2018
its finally making me sick
Yep, Mr Optomistic is throwing in the towel. I have to let you know that I am feeing like crap.
Back when my eGFR ( a calculated number to represent the percentage let of my Kidneys) was at 11-13 the Renal clinic said many people in this state have symptoms that are tough to handle and they start dialysis. I was feeling fine. Maybe I needed a nap in the arvo but that was it. Also at this time I was afraid the Dialysis would throw off the balance and I would feel sick when I wasn't.
Now I'm at eGFR of 7 and my new symptoms include Vertigo, extreme fatigue, loss of appetite, nausea. So now I'm looking forward to starting Dialysis. I get windows of a few hours hours each day when I feel okay and the rest I'm sleeping.
I'm not sure of how well my fistula is developing and not sure if I still have to wait some more to get started but I'm happy to start when they say.
On a lighter note Doc Shozenbootzen had cleared me on my first hurdle to getting a kidney transplant. He has declared that he (and the Hosp. Oncology group) have no reason to say I can't have a transplant. That now goes to the PAHospital Transplant unit for assessment. If they say I'm worthy of taking the time and effort to transplant they they will begin to assess my potential donors.
I have 5 people that have all done initial checks with their doctors to see if they are healthy enough to do a Live Donor Transplant to me. I'm pretty blessed to have family and friends that would take this risk and give me one of their Kidneys. I only need one kidney so assessments will take place to see which of my benefactors will be the one.
That make me feel a whole lot better already!
More later, Chris
Back when my eGFR ( a calculated number to represent the percentage let of my Kidneys) was at 11-13 the Renal clinic said many people in this state have symptoms that are tough to handle and they start dialysis. I was feeling fine. Maybe I needed a nap in the arvo but that was it. Also at this time I was afraid the Dialysis would throw off the balance and I would feel sick when I wasn't.
Now I'm at eGFR of 7 and my new symptoms include Vertigo, extreme fatigue, loss of appetite, nausea. So now I'm looking forward to starting Dialysis. I get windows of a few hours hours each day when I feel okay and the rest I'm sleeping.
I'm not sure of how well my fistula is developing and not sure if I still have to wait some more to get started but I'm happy to start when they say.
On a lighter note Doc Shozenbootzen had cleared me on my first hurdle to getting a kidney transplant. He has declared that he (and the Hosp. Oncology group) have no reason to say I can't have a transplant. That now goes to the PAHospital Transplant unit for assessment. If they say I'm worthy of taking the time and effort to transplant they they will begin to assess my potential donors.
I have 5 people that have all done initial checks with their doctors to see if they are healthy enough to do a Live Donor Transplant to me. I'm pretty blessed to have family and friends that would take this risk and give me one of their Kidneys. I only need one kidney so assessments will take place to see which of my benefactors will be the one.
That make me feel a whole lot better already!
More later, Chris
Wednesday, March 14, 2018
Kidneys...who needs them.
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
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
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
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