Hello From Manitoba, Canada,

[huldafolk]

Just felt I would join up as I have visited as a guest for some time. Felt I might as well tell my stories as well. I am a 50 year old retired dentist due to Polycystic kidneys and a very horrific medical history related to treatment gone bad and multitude of surgeries. I knew from about age 20 that I had inherited the polycystic gene from my father. I went through with my life as normal with yearly follow-ups with a nephrologist at Winnipeg's teaching hospital HSC.  I first got into trouble in the summer of 2002 when I suddenly developed a pulmonary embolism and nearly died . I survived after a stay in hospital with anticoagulants and O2 treatments.  I was discharged without a full investigation as to why I had the embolism. I was put on Coumadin and followed for INR only.I believe the clot was released from my IVC which required opening and clot removal during the bilateral nephrectomy operation to follow in Dec. of 2002. I also believe that my surgical outcome would have been better if the investigation was done then and not waiting until I showed up in life threatening critical condition in Dec. of 2002.
          As Dec.2002 approached ,I had multiple episodes of cold spells with full body shivers. and passing blood in my urine(visible). I continued working thru all this. Finally I got to a point where I could not take a full breath and was attempted to have intubation placed at a rural hospital. I vomited. My wife insisted that they transfer me immediately to Winnipeg,HSC by ambulance(about 1 hour away). I made it by minutes as there was no way to treat me on the ambulance if my breathing failed. I got into the ER and crashed. They wanted to intubate but I refused due to the last attempt, They used a pressure mask and stabilized me with that. At that time they place a catheter and blood was the only thing that came out,and lots of it.  With investigation over the next few hours ,it was determined that my IVC was blocked with clot and my kidneys were bleeding and not able to stop other than Bi-lateral Nephrectomies STAT.  I went to surg. that night and wasn't out of anesthesia for 2 entire days. I was placed into ICU still under anesthesia with my abdomen packed due to unstoppable bleeding, but other vessels were clotting( my pre-surg. wrist fistula was used once prior to the surg. then clotted during the surg.).
             When they brought me back into surg. to close the incision from breastbone to pubic bone, they found that my large bowel had been perforated during the first phase of the surg. and I required a right side ileostomie with the removal of my ascending right large intestine.  It was now 2 days since I went into surg. when I awoke in the ICU intubated with no way to ask WHAT THE HELL HAPPENED??. I had central lines coming out of both sides of my neck and eventually had the central line wire tracked to come out of my chest. I was also on constant dialysis in the ICU and heavy narcotics for the pain(fentanyl) I found out after that they told my wife when I went into the ICU the first time after the first phase of kidney removals and IVC clot removal/ right groin fistula formation/clotting and excessive bleeding/transfusions etc. that" we have had people like him survive in the past".
        I am now into my 7th year of heamodialysis with a second fistula that was placed in my right arm bicep area during my stay in the hospital for recovery from the major operation (I was in and out for a full year due to various complications from the intestinal injury and eventual reversal with abscess formation /drainage procedures/CT scans/venous feeding tube. )  It took me about a month of therapy to be able to walk again after the long bed rest position I was put into due to the surg. I still have very weak muscle capabilities and tire very easily.  I have had a second intestinal injury when my dog jumped on me in the middle of the night and ruptured my left colon. I had emergent surg. and had a left side colostomy formed. I live with the bag to this day with only one surgeon in Winnipeg willing to talk about a possible reversal after I have a successful transplant.
            I am going into surg. in the next couple of weeks for a tie off of the fistula in my right groin. It has been there to increase flow through my IVC (have a stent in the IVC from a separate procedure after the clot was removed at the time of the bilateral nephrectomies) so that I would have vessels to transplant to on the right side(the required vessels on the left side clotted off during the bilateral nephrectomies). The groin fistula has caused a back flow of fluids into my right leg , and it always gets very enlarged between dialysis treatments.(twice the size of my left leg). By tieing off this fistula they hope the flow will correct and the leg will be of a more normal size.  My list of drugs is long. Parathyroids intact due to taking Sensipar for years. Nearly deaf in left ear associated with fluid changes (Miniere's somewhat controlled by Betahistine> Cerc, sometimes vomit for hours in a cold full body sweat).
             I am still alive> they haven't managed to kill me yet!!!

[Dianejt]

 
Wow you have been through so much.

[kellyt]

Fabulous introduction!      It's amazing how much one person can go through.  I'm happy you're still alive and have such a great outlook.  This site is amazing.  You will find much love and support.  So glad you found us and I look forward to hearing more about you.   

[MooseMom]

Goodness gracious me...what a horrific story.  It just makes me mad that anyone has to suffer so much.  Life really isn't fair, and that makes me so angry. 

Most of us tell our medical stories in our IHD intro but forget to tell the rest of our story...do you have any hobbies?  What do you like to do for fun?  What interests you?

[Jean]

You are one awesome person!!! Thanks so much for joining and    to IHD. We look forward to hearing from you again. Keep us posted.

[Des]

Welcome,
They really tried very hard to kill you, didn't they. Oh MY!

[galvo]

G'day and  . You're a real trooper.

[Rerun]

Hi huldafolk and welcome to IHD.  Holy Crap!  Yes you are still alive and your inro was very intense.  I could not stop reading it.  I had a colostomy for 9 months and they did a reversal.  I hope you can get that done.  Damn Dog anyway! 

Hey, I'm so glad you joined us.  I look forward to more of your posts.

I went to the Dentist yesterday to get my teeth cleaned and the Hygienist was kind of rough and then I went to dialysis and didn't think about the Heparin and my mouth bled all night.  It was so gross! 

Rerun, Moderator   

[huldafolk]

Thanks for the welcome.  Just back from 4 hours of treatment. M/W/F .  My pastimes are my family,wife of 28 years(dated in high school and married at 22 with 3 years of dental school to go), son 18 going into second year of university(wants to be a police officer,), stands 6'6" and plays middle blocker for U of Winnipeg, Wesmen. and my 22 year old daughter who just graduated from a 4 year music degree and is entering a 2 year education program to reach her goal of Music Teacher. My daughter has Polycystic kidneys(no symptoms as of yet) and we have not bothered to test my son> as there is very little else to do if he is positive for the condition other than diet (which we watch closely now anyway). I love to go target shooting with my wife and son(daughter not so much into it).  We have a cottage at Lake of the Woods in NW Ontario and like to get there as often as possible. 2 dogs ,one cat and one fish!
    I have a sister one year younger than me that does not have polycystic(she was not a match for me,nor was  my wife) but she did match my older brother and gave him a kidney about 18 months ago,everything going well. My brother made it to age 51 before he had to start peritoneal dialysis and then got the transplant within about 6 months of starting dialysis. My older sister is also polysistic positive but is now 52 with good function still. I had shit hit fan at age 43. Just getting into my big earning years then had to retire because of all this. My wife and I owned our own Dental Practice in a small town north of Winnipeg, called Gimli. She is a Certified Dental Hygienist. She had to sell it when I was laid up in the hospital and she would work the day, travel in to see me at end of work, then drive back to spend night with the kids. Went on for months. We moved into Winnipeg in order to be closer to dialysis as no Tx available in Gimli. Had to sell everything and move.

[jg]

Huldafolk:
I am a fellow Canadian kidney patient in Calgary, waiting for a transplant.
Thanks for your introduction. Life has certainly kicked you in several
body parts  , but you keep on ticking.
If you are interested, I have a thread in the General Discussion section
called Dialyzing In Canada.
 

[huldafolk]

Thanks, I will keep an eye on the site. H

[Razman]

  Great to hear from another  Canadian .  I have family in  Winnipeg and  Minitonas  ( if you know where that it is ).    Please stay in touch.     

[Bajanne]

Welcome to our commmunity!  Grateful that you are still able to be part of us, inspite of your tremendous challenges!  You are definitely my idea of a survivor!  Since you have been a guest for a while, I don't have to convince you that IHD is the best place for information, support and encouragement.  This is a genuine family 
Please keep us updated (in the appropriate section) on how things are going with you.  Not nosy; just family.




Bajanne, Moderator

[huldafolk]

Thanks , I will track the site on a regular basis,