Test from my Cell

If this works my Dear Sweet ( ultra proactive ) Wife won’t have to do posts for me while I’m in the Hospital Recovering.
OH PLEASE WORK ! ! !
( I couldn’t resist )
AL

Next Dr App’t

June 3rd Kelowna Nephrologist.

Blood work will be done to see where kidney finction is at now.

 

Surgery update

Here is where it’s at right now. Leon is the confirmed donor. Allan did not have any evedence of a brain anurism (MRI results back last week), so they are ready to book a surgery date.

May 22nd both Allan and Leon went into a paired donor exchange registry. This could possably match them up with somebody else who has a donor that doesn’t match. It’s kind of like trying to expand on this gift and help somebody else out. If this happens, then the 2 surgeries are done on the same day. They say they would give Al a kidney that is as good a match and health, age, etc as Leon’s would be for him. By the beginning of June they should have all the matches done and let us know if there was another match. If there was NOT another match, they will book a surgery date for Leon and Allan to go ahead with the surgery between the 2 of them in Vancouver.

 So at this time, we just know the surgery will be June or July.

Then Allan must be in Vancouver for 3 months post surgery, so they can closely monitor him.

We will post an update as soon as we hear more.

A wife’s perspective

I think my interpretation of Allan,s health may sound alot the same but also alot different.

 Main symtems being: tired to the point of exhaustion, leg cramps, itchiness, poor sleep, loss of appetite, weight loss (mostly muscle mass), cold all the time, kidney ache, nausea, vomiting, yellow eyes, sallow skin,and a constant virus of one form or another.

 Allan struggles to maintain normalicy(and I do mean struggle) AS we watch him struggle, we see him disappear further into himself.  Many times he will not admit that he is struggling, but is grouchy, exhausted and distant. Many times when either of us tries to include him in conversation, he replies with “I dont know” and that’s the end of it. Dane has been very patient (perhaps more patient than me), and will just quietly say to me “Dad need”s a new kidney”. Our plans have to change all the time depending on how tired  dad is. (example:We plan to go boating as a family, but last minute Al wil decide not to join us. Or we were going to go out for dinner , but Al came home and slept instead.)

 I am feeling lonely lately. Yes, I feel guilty even admitting this, as I know there are many widows out there, who would say I should just be happy my husband is alive. However, there is certainly a lonliness of seeing a person every day, but feeling like they are not really present.

The Tiredness Explained

I’m rethinkin this one.

I was asked a couple days ago about the Tiredness,  Here’s the best way to describe it, in my sick little mind :

I’m a Ski Boat (planing hull boat) moving along the water, using a lot of energy to keep going,
the boats not quite on plane so its plowing through the water using a lot of energy,
As long as the boat (I) keep moving I stay ahead of the big pile of water ( fatigue) thats following you.     If the Boat (me) slows down (you back off the throttle)  a bit the big pile of swate (stern wave) which is Fatigue swamps you.  Then you have to use a lot of energy to get moving again,  its hard on the boat to operate that way,  its hard on my body to operate that way.   The 5 hour energy shots give me the push to get the boat (me) moving along on top of the water ,  until  9pm, then I stop and let the fatigue roll over me and try to sleep.  then do it all over again ,  Yah Baby !

Meet My Little Freind !

So I had mentioned that I am Done by the end of a work day and that Naps weren’t the answer.

Well I have a little Turbo Boost that gives me enough energy to get through the 4pm to 9 pm doldrums of tiredness and actually get some things done.  I did ask my Kidney Pharmacist about these and other Vitamins. They are not 100 % glowingly approved, but are ” not to bad” on an occasional basis and not more than 1 a day.   My Friend is  5 Hour Energy Shots,  they’re not sugar bombs,  contain as much caffeine as 4 cups of coffee and a bunch of vitamins,  they don’t give me a crash and if I take them after work I can still sleep at night.    Thanks to those little fella’s I am  getting the house ready ( my junk organized and cleaned up ) for when I’m recovering in Vancouver.  Also using the energy to work out a bit,  getting ready for the transplant.

My Damn Kidneys !

We’ll Good News, Badnews at the same time.

My Kidney function has been at approx 20 % for Feb. to Apr.  after the drop to 16 % in Jan.  So going by the Numbers,  I’m not ready for transplant / dialisys,  but Judging by my body I’m a lot more ready.  I am having trouble getting through a Normal Workday, even after adjusting my work hours to allow me more sleep and taking the easier jobs at work when I have a choice.  By the time I get home @ 4:30 ish, I’m DONE !!   I tried having a Nap after work. I’d be sleep ing a couple min after laying down and would sleep hard for 30 – 60 min.  but would have a hard time waking up and later on sleeping at 10 pm,  so that wasnt cutting it.    My other Symptoms move around, the Itchiness varies, day to day, cramping is still fairly constant, I’ve been having a lot of Kidney Ache as my Kidneys try to filter my Blood, or the ache could be from Cysts Cysting,   Sleeping isnt and  I have some Nausea and Headaches at times,  so factoring the above in to the Mix ( only lightly weighted ) and taking My Team’s ( Donor and Family) Feelings into accountand the whole uncertainty of when this will happen, coupled with them not being able to plan their Busy Lives ( run on sentance ) the transplant cant happen soon enough.     I DO REALIZE THAT I AM SO FORTUNATE TO HAVE DONOR(s) READY TO GO SO WE DONT HAVE TO CONTINUE ON THIS TRACK AND THEN DO DIALYSIS . I AM SOOOOO  GREATFULL ! !     AND I DO STILL HAVE THE ATTITUDE IT COULD BE A LOT WORSE AND THERE ARE PEOPLE IN THIS WORLD WHO WOULD PAY MILLIONS IF THEY COULD TRADE ME PLACES.   So now I feel Stoopid, complaining about my little problems,  oh well,  Count Myself Lucky then !!