tricky, lucky day


this afternoon my sis fell in her bedroom racing to grab a phone call.

she is a kind, strong, celtic-viking Canadian retired RN.

she got herself up.

she is sore but otherwise unhurt.

this transplant recovery

business is not for sissies.

aflter this I prayed harder than I have ever before in my life.

God is good. It is a beautiful night.

bumps


successful kidney transplant 13 days ago

 

bumps primarily is my legs are still recovering post surgery

 

getting me vertcal is tough

I am 6 foot 2 inches and weigh 230 lbs

each day is better and I get stronger.

It is a great gift. I pray I deserve it.

smoothing and settling


tough day yesterday but thru we got. Today I feel stronger by the hour. All the new wrinkles, daily domestic stuff all smoothing into easier routine. Ten days since kidney transplant.

 

What I have learned is how well we had smoothed ou the life of dialysis. Very very smooth.

snap day at dialysis


things have not been going well and much of the trouble revolves around low blood pressures on my part….

for example, today when I came in it was quite low….this makes it impossible to remove fluid without lowering my bp significantly below 100, normal and perfect is 120. I have quite  few moments of low bp during dialysis and felt light headed at home and out in public after dialysis.

it seems to the nurses and I that my bp medication needs to be reduced….

when I asked them to call the on-call nepjrologist at Orillia Hospital, they said no.  There is no doctor on site at the Penetang Hospital since it is principally a geriatric facility and also seems to handle physio for new amputees, altho I havent seen many amputees in a few months so that may have been moved over to the hopsital in Midland.  If a patient gets into trouble, an ambulance is called and they are transported over to Midland Hospital.  We see a nephrologist once  month on site here at our clinic.  Next clinic is pushed late in February for some reason probably winter holidays, it will take place on Feb. 13th.

I have been feeling light headed and beginning to black out, to grey out my vision, a few times over this month.

The snap by me came when they decided not to call the on call nephrologist.   Instead they suggested I get a bp machine and start measuring my bp at home.  It is my conviction that we have enough data over a long enough time to ask a doctor.  In my sixth year of dialysis, I have lost my temper just twice.  This was the second time.   For some reason at the last monthly clinic the nurse preparing my chart failed to note this issue. I blew it as well by not recalling it.  My talk with the doctor had to do with elevated phosphorus and with figuring out a new heavier target weight, tricky to do immediately after the holiday feasting season.

The other moment when this bp problem might get addressed is on next Wednesday when the nephrology do a clinic rounds by telephone to the “satellite” clinics (Orillia is the main unit and there are some 6 smaller satellites including Penetang Hospital).

Sitting their seething was beneficial today, it raised my blood pressure.

Dialysis Monday


Holy fahrenheit,  this morning at 620 AM it was -23 Celsius with virtually no wind. Huge bright, fat moon hanging brightly in the sky as I took off in the car.  Drove to Penetang for my regularly scheduled dialysis, more about that schedule in a moment.   One hitch, I got the wrong disc from Season 1 of The Good Wife from the library on Saturday, one I had already viewed.  Drat.    Great series by the way.

The D run was smooth.  Generally I have been feeling better and that has persisted.  I have more energy.

I was asked yet again to switch my “fourth” run.  Starting this Thursday I will be going in first thing in the morning not at noon time.  This was to help out another patient who needed to change from the mornings.

Also for the next two weeks to accommodate Christmas Day and New Year’s Day, all the patients make mini-shifts.  My main difference is going in first thing on the next two Sundays.  Ho, Ho, HO.

Dialysis today


Hemodialysis today my third day in a row, smooth run, with a question about a schedule change.  I am currently going Monday, Wednesday and Friday for four hours per day starting at 715 am. Then a “4th” run on Tuesday afternoon.

The proposed change was to help out with another patient who is cutting back to one dialysis run per week and fits the schedule better on Tuesday afternoons.   So question was could I manage a change to Thursday afternoons.  I said I could do that but that I wanted an answer to one question.

“Who do I have to kill to do just one run a week?”

One of the dialysis nurses replied, “It’s just money, Bill. We just want money.”

Google trick for the day,  I looked up Old Tom Parr, who reputedly lived to the age of 152 in England.  i found a description of him in Pete Brown‘s book, Shakespeare’s Pub.

see http://en.wikipedia.org/wiki/Old_Tom_Parr

It’s a beautiful day.  We have had a long stretch of sunless days. so the sun is a happy visitor today.  Time to take a shot of the Bay.

rant warning 2nd shoe drops


SECOND SHOE DROP – got the preliminary heads up that with the assholes in nephrology having destroyed my perfectly excellent fistula the day after my surgery on July 31st and running with a chest line; my clearances never great were just at the bottom of acceptable with fistula, below that with chest line = more dialysis time going to be recommended.

I am already doing 4.5 hours Monday, Wednesday and Friday.

If they say I must give up my Saturday as well, they will be told in a loud clear voice to go fukk themselves. I have done everything they have ordered, their process is fukked post surgery, they should have run it like a two day weekend. There was no burning need to do dialysis within 24 hours of surgery.  Surgeon asked they hold off on hephrin for two sessions post surgery, he did not want me to bleed out.  They regulary wait 62 hours between friday afternoon and Monday afternoon dialysis runs and I dont explode in a toxic mess.  I asked them to take a look athier protocaol.  god knows if they will.

I will grudgingly give up to an added Tuesday or Thursday slot. Trouble is the scheduled is pretty full up for the regional nephrology. If it came to it I would drive to Toronto to save my Saturdays.  I moved to Mon, Wed Fri, so I might be able to take some continuing education courses usually scheduled on Saturdays.

Rant now over, stay healthy, I didn’t, and it sucks royally.

dialysis progress


where you are an outpatient on life support…

lately all has been stable and well in my version of hemodialysis so I haven’t been blogging much on the subject, it gets to be like the familiar wallpaper of my universe.

over the next few weeks a few things should get settled after a flurry of appointments and tests:

  1. parathyroid surgery likely, not sure if this is a go or when it will get scheduled
  2. word on my cardiac status with regard to my viability for a kidney transplant

next month, in the first week of November will be my fourth anniversary of hemodialysis (November 6th or was it the 8th, 2008, have to check my notes on the exact day of starting)…..it has been an interesting ride so far.   I suspect that at the time I started I was not far from death, which is a longer story than I am inclined to type up today, I will save that for another day.

today I am sitting out on my back deck

in the almost sunny mild air tapping on this laptop, talking to Grace the golden retriever and marvelling at the number of chainsaws and other power tools in action in the neighbourhood today. Light aircraft passing, crows laughing and chickadees chattering.  Squirrel traffic is heavy as well.

three holes in bowling ball, an odd dialysis treatment


A little trouble to get started with dialysis treatment using my fistula today: two nurses worked it out though and I ended up with three holes not the usual two.  My pump speed was excellent 420-430 and I cleaned 106 litres.

coming down the pike:

  • anigoplasty to fix a narrowing in the fistula
  • trip to Toronto, for a final check on my healed heel
  • end of August surgery to remove most of my parathyroid glands
  • seems we have lost one of our dialysis patient team to home hemodialysis, this program is ramping up in this area of Ontario – I will miss yakking with him in the waiting room

parathyroid removal is common related to hemodialysis