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!!!
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