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If your NEW please take a minute and read the About Me / This Blog Page to the Right ( I updated it Sun. Aug 9th ).

This is My / Our record of dealing with my Kidney Transplant.  Its for anyone interested in my process ( friends / family ) or anyone searching the web.

Important Dates :

June 27 / 09  Started this Blog,

July 27/ 09, Transplant date.

July 13 / 2010,  Complications click the dates on the calender .

Oct 12 / 2010,  Ureter Repair Surgery and reocvery

The Rules :

1) I tell it as I see it / Experience it, be it right or wrong, correct /or in error (not intentional), It’s from My Perspective..

2)  At times it will be rather Graphic / Crude,  Off Balance and I Guarantee You will find Spelling / Grammar Errors.

3) Just because it’s been my experience does not mean it would be yours.  If you’re going through this Don’t Get Freaked by anything hereAsk Questions of your Doc’s and Read !.   I was not expecting  some of the things I experienced and a little heads up would have been nice. BUT, I now see I didn’t do enough research or asking,  so I take responsibility for that.

Here’s the basic plan for this Blog,  (most recent posts @ top):

1) Pre-Transplant Prep ( July 2009 ),

2) The Transplant Itself  , July 27 / 09  and Hospital  Recovery

3) The Recovery Months, post Hospital,

4)The Meds ( separate page @ right)

My Original Blog about Me / Us  dealing with Failing Kidneys is still here :

http://mydamnkidneys.wordpress.com/

It's GO TIME, 5 Hrs B4 Surgery.

5 Hrs before Surgery,  Ignorance is BLISS ! !

I CAN’T CHANGE THE WIND,  BUT I CAN CONTROL MY SAILS ! !

Oh, The Dog at the top is Our Dog, He did that to himself and would probably have died if not rescued.

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-Scroll Down for the RECENT  BLOG Posts-

Some Cold Hard FACTs :

A )  25 % of People on the BC Transplant Waiting List WILL DIE Waiting !

B)   Kidney wait lists are 5 – 8  years or more, on  Dialysis,  which does not give a healthly quality of life, untreated = Death.

C)  Every Effort will be made to Save Your Life Even if You are a Registered Organ Donor.

British Columbia: www.transplant.bc.ca

Canada go to : http://www.transplant.ca/pubinfobecomedonor.htm,

United States Residents : USA  > http://organdonor.gov/donor/index.htm

Most Importantly, Discuss your wishes with your Family .

Pope John Paul II

It was about 3 1/2 years since my transplant when I hit another bit of a bump, although at the time we didn’t know it was transplant related.

I was hit with a Flu bug that got my Wife and Son a short time earlier.  It was a hit hard and fast extreme Vomiting and Diarrhea for a few hours then it passed for the most part with a couple days of minor “after shocks”. It left us all feeling weak for a couple days.  It so-happened that  we all got this bug while in Mexico, BUT it was not a Montezuma’s revenge kind of bug, it was a legit flu.

scuba playa

Scuba diving at Playa Del Carmen, Mexico

My wife and I at 100′ below the surface.

We also saw Bull sharks on this dive.

This was before the Diarrhea !!!!

 

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I returned to Canada as planned a few days later but the diarrhea continued for days, weeks and eventually a couple months.  I went to the toilet between 5 – 20x per day, mostly 1st thing in the morning and from mid afternoon on. Basically after I’d eat.   Imodium sometimes slowed it down but not much. I eventually dropped almost 30 lbs from 184 lbs to 157 ( my grade 9 weight ).

I had been to my GP, Emerg a total of 3 times for rehydration, was booked for ” a scope” to see if there was anything abnormal and throughout had had lots of  bloodwork to monitor my Transplanted Kidney.

I was finally admitted t the hospital for 6 days  as that was the only way they could get me scoped and various other tests done without a 3 week wait.  All tests scopes, barium xrays etc came back normal.

I had a feeling it was Transplant Med related as I had similar Diarrhea problems after a trip to Bali 2 years ago. I was finally switched from Cellcept aka Mycophenolate.to Myfortic  aka Mycophenolate Sodium  which eased the symptoms and allowed my bowels to recover.

I was switched from Myfortic to an old original anti rejection drug called AZATHIOPRINE about a week later the diarrhea started to subside and I started to gain weight again.

Apparently this diarrhea thing is not all that uncommon on these meds.  I guess this is one of the negatives to transplant drugs.

To much information alert !!!!Re ” Diarrhea and Burning watery bowel movements.   The “runs” where mostly water and not the acidy runs I had when I was 1st put on Cellcept.  Despite this, that much use of a body part becomes very painful over time.

I tried several barrier creams supplied by the hospital but they didn’t help much.  Then I tried Elizabeth Arden 8 hour cream.  This “Beauty Product” was the silver bullet  relief for my tortured sphincter.  Its about $ 25 but when your in pain its worth 10x that for relief.

elizabeth_arden_eight_hour_cream

This stuff works.

Here’s a link to a write up about all its other uses.

http://www.beautylish.com/a/vxyzy/cult-product-elizabeth-arden-eight-hour-cream

I’ll leave it up to you to figure out how to apply it.

 

The year preceeding this and since the med change have been great.  I’ve been very active and Work / Play hard.   I’ve been living life like I’d never had kidney trouble ( apart from using sunscreen more regularly ).

My bloodwork has been consistant within my baseline of 200 – 230 Creatinine, mostly 210ish and 120ish for hemoglobin.

I’ve been feeling good.  Labs are monthly and post transplant Dr. checkups are every 4 months.

I’ve been on 1 vacation this spring to Maui.  I was glad to be in a clean safe country but still felt uneasy the 1st few days being in USA without Kidney related insurance.   Now that I have been healthy and stable for nearly 2 years I am hoping to be able to get good travel insurance that will protect me even if I have kidney related issues.

My Wife,  Son and I did some scuba diving and got our Padi Advanced Open Water certification.  We dove a wreck off  Lahaina, Maui for our deep div. It was 90+ feet deep with a Major current, like a river, the 1st 80 ft down.  It was great.   Unfortunately I use my air way to fast and had to cut the dive short.

I look fwd to being more active and pushing my healthy body in a good way.

2 years +, doing well.

I guess no news is good news so the fact I havent posted in a while means i’m to busy living a healthy life !    A big plus as well is that my Kidney Donor Leon is doing very well, healthy, very active, good bloodwork and says if it wasnt for the scar he wouldnt believe it really happened. !  Awesome.

July 27 was the 2nd anniv of the transplant as well as marking about 8 months since the ureter repairs where compled.

Bloodwork has been around My post transplant baseline with Creatinine 195-220  and hemo between 115 and 123.     I did have 1 creatinine test in August where it climbed into the high 230’s but that was Hydration related & the transplant clinic said they were seeing a lot of higher readings during the heat.  I just had to up my water intake.

I’ve been able to work 12 hr days at times doing fairly physical work now ( although after a few it gets tiring. I cant believe I used to do them all the time and on night shifts as well ).

Recreation wise I’ve been busy, water skiing, wakeboarding, biking, hiking and my favorite,  down hill mountain biking.  The best was when Leon (My Donor) myself and our 16/17 yo sons were able to spend a full day Downhilling at Silverstar Resort.  His ultiamte gift made that possible.    I now wear full body armor and have custom  made a Transplant Kidney protector which provides a lot of protection.  Iusually ride  tamer now, still have fun at about 80 % intensity and in full control but I miss riding the edge of the envelope where its all or nothing.  That adrenalin is amazing but I have way to much to lose now.

This is a tast of what its like ( I dont go this hard ).  Video does not do it justice.  Its not us riding.

http://www.youtube.com/watch?v=3tpJ2ATalBg&feature=related

http://www.youtube.com/watch?v=x9JKYadUxsI

The only thing thats still off is how my Muscles fatigue SO fast.  About 3 floights of stairs I feel a real burn in my legs,  it hasnt got better even after months of activity.  Nothing major, just something I notice.

Thats it in a nutshell,  My family and I are enjoying a normal active healthy life once again due to Leon donating his kidney, the science, pharmacueticals and doctors / nurses who work with us patients.  And of course the families and friends who where there through it all.

THANK YOU !!!!

PS  whats with the random advertising on wordpress now ?  Gotta see if I can get rid of it.

 

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We just got home from a family vacation. My wife son and I went to Bali, Indonesia ( pronounce Bali, or phoneticaly = Baleee  long E sound , but not  Balli ) for the 2 week spring break.

Bali is a Beautiful county with Great people.  It was our 1st time to that part of the world, it was truly awesome.  We had a lot of  fun and did some great activities. the 3 of us Scuba dive so we did 6 dives, saw 3 – 4 meter/yard  wide manta rays, dove inside a 130 meter/yard long ship wreck and saw amazing coral and fish.  My 16 year old and I did a 2 hour white water rafting trip down an amazing river with about 15 waterfalls dropping into, and some onto us while my wife shopped UBUD a nice town in the Bali interior ( in the movie Eat Pray Love ).  We did a lot of other fun things and some Great R & R time as well.  I enjoyed a few afternoon siesta’s in our A/C room as well.

Despite a great vacation in a beautiful country with my family I felt uneasy, especially the 1st few days.  Its my 1st trip since the transplant and being that far from the medical team that has been there for me pre and post transplant had me worried.  The potential financial consequences if there were complications also weighed heavy on me as travel insurance we had and the others I looked into exclude Pre-Existing conditions.  The 3rd factor was the Imuno-Suppressives I’m on an the lower standards of cleanliness and different types of “bugs” there.  I expect as time goes on and I have a longer run with the new kidney I’ll be able to travel with less anxiety over complications.

Bali Indonesia is located in the bottom approximately center of this map

This is the wreck we dove, USS Liberty

Milestone !

I Had my regular post transplant checkup a week ago. I have been off Prednisone for a 5 weeks now. All bloodwork is back to my pre complications baseline of about 200 creatinine give or take 10 ( or 2.27 ). Hemo is still a bit low around 120 ( 130 is target ) everything else is stable.

The Doc says everything looks good. I’m now at bloodwork monthly and checkup every 4 MONTHS, yes 4 Months.

Thats reassuring for sure, especially getting that news the day before we leave the country and head 1/2 way around the world for a couple weeks.

I felt mixed emotions, a bit of fear that that’s to long between appt’s and what if something goes wrong but they wouldn’t want that either and im doing monthly bloodwork so let’s look at the positive !

An added bonus is the transplant doc also signed off on my Scuba Medical Release so Im cleared to Scuba Dive again. ( the Docs a diver too so that may have helped )

A few days ago at work I had stopped to check emails.
While sitting at the computer I suddenly experienced a giant muscle cramp at the incision site over my transplanted kidney. I shot out of the chair , partially from shock, partially from discomfort. I’m glad no one was around to see me spaz. It would just reinforce the ” sick AL ” label.
I massaged the site and moved around to work it out. Overall it only lasted about 30 seconds.
I had the transplant over a year ago and had had a couple of these a few months after and was suprised to have one at this point.
Everything seems good now !

I’ve just made another step to regain the ground I lost last summer when the transplant complications caused 6 months of drama.

When I had my flu like symptoms and felt weak and tired I had tried to eat one of my all time favorite treats,  Tiger Tiger Ice Cream.

Now its a fact that when your in a strong state either positive or negative and experience an event, esp repeatedly, an association or link is formed ( I have hundreds of these triggered by certain songs, I’m instantly transported back to a point in time, be it good or bad ) .

Well I developed an association to Tiger Ice Cream and the whole negative couple weeks surrounding that time.

I’m proud to say that with determination and perseverance  I’ve mostly broke the negative association, although the Tiger doesn’t quite get me as happy as it used to.

These guy’s are giving thanks with me for my remarkable comeback.

Happy Trails everyone.