LVAD Patient Endures Extreme Setbacks but Refuses Defeat
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Keith Poulloin’s life was saved by implantation of an LVAD. He has, however, endured a series of complications, sacrifices and frustrations that would defeat most people. Instead he declares, “I am still here, I am still fighting, and for all it’s worth, I am still living my life. Every day is a new adventure. We are somewhat the experimental group of this new technology and some of us will suffer because of it.” Here is his story:
MY LVAD JOURNEY by Keith Poulloin
I guess this journey really started on June 6th 2010, the day I had a massive heart attack that almost killed me. I learned it was in fact the fourth heart attack I had, but the previous three went undetected. Mainly because of my stubborn denial that anything was wrong with me.
Anyway, six stints later, I was eventually released from hospital. Four months later a defibrillator/pacemaker was fitted as I was apparently in the top 5% at risk for another heart attack.
Life pretty much went on after that, at least until late July of 2011, when my defibrillator fired off twice within three days. A right heart catheter was ordered, and I received the news at 54 years old that I needed a heart transplant! WOW!! Words you never expect to hear.
At first, I was referred to the Ohio State campus hospital in Columbus, OH. They basically told me, after going through a barrage of tests, that I wasn’t sick enough to qualify for a heart transplant, and that I was too fat. I was told to go away, get sicker, lose weight and come back at another time. Unbelievable, but true. I went home, got sicker, and basically prepared to die.
I got very sick indeed. I was sustained by oxygen and could only walk with a walker. Any outings needed a wheelchair, or I couldn’t go. I was eventually convinced to try Cleveland Clinic where I met Dr. Lee. This man saved my life by making sure my diagnosis was done to the maximum knowledge they had at the time. I was eventually diagnosed with Small Vessel Disease, which was the reason I was failing the previous tests that were administered at OSU. The difference was that the doctors at Cleveland actually bothered to do the tests that diagnosed me. I was scheduled for LVAD surgery on Dec 6th 2012.
My surgery was very successful and my recovery swift. I was home by Christmas Eve. I recovered really well, and by the summer of 2013 I was walking regularly and riding my bicycle all over town. Life was good, and I was thankful for the LVAD. It had literally saved my life. This continued until June of 2014. I went for a regular checkup at the clinic, and my controller was replaced with a new version..one that was much more precise and accurate in diagnosing faults and problems.
That night, at about 3 am, I got an alarm on my controller saying fault in line. I called my team and replaced the controller for my spare, thinking it might just be a faulty controller. The following day, while waiting in line at a restaurant, I received the same fault alarm again. This time I was told to go to the hospital. I stayed there for about three weeks while we went through one controller after another, all eventually giving the same fault alarm. It was decided that the fault was in the pump itself, and surgery was scheduled for a replacement. Before that though, Thoratec wanted to send their technical guys to exchange the outer wiring to make sure the fault wasn’t there. The guys came, replaced the outer wiring, and during the procedure, the alarm went off again! I asked the technician, “Was that you?” He replied, “No, the fault is internal.” With that, they left, and surgery was scheduled.
The day of surgery, my team and surgeon came into my room all smiles, and they showed me a picture they had been sent by Thoratec indicating the fault might be external after all. Apparently ignoring the technician who did the procedure, my surgery was cancelled, and I was sent home.
Three days later, my pump stopped and almost killed me. It was Saturday morning, I awoke to a loud alarm from my wall unit and a red heart flashing on my controller saying pump failure!! While waiting for the ambulance, the pump stopped and restarted three different times. After analysis, it was discovered that the pump had tried to restart over a hundred times on the last attempt, and that the internal battery was almost out of power. I was literally seconds from it failing permanently.
A replacement surgery was scheduled for Monday in somewhat different circumstances than before. The replacement surgery is different from the original in that they don’t have to open the chest. Since the cannula in the heart does not need replacing, they are able to go in under the ribs on the left side and remove and replace the pump that way.
Surgery seemed to go well, and after the normal time in hospital, I was sent home to recover. It soon became apparent to me that something was wrong though. The wound wasn’t healing well and was very sore and weepy. I made an appointment to see my surgeon who realized it was infected, and I was readmitted. This was the start of the real nightmare. They did the surgery to try and remove the infection, but it was so bad and so deep, they had to remove a huge amount of infected tissue. My pump was left exposed, and the plastic surgery team was called in for solutions.
The solution was to operate, move muscle and tissue from the right side of my stomach to flap over the wound and attempt to close it that way. That surgery left me with a huge scar about three feet in length from under my left arm, all the way across my chest and down to my right side. Again, after normal recovery time, I was sent home.
A few weeks went by, and I was due to go back to see the surgeon to get the staples removed. He saw that the wound was still weepy and sent me home for another few weeks. Then I went back to him just before Thanksgiving. He removed the staples even though the wound still looked very “wet” and was sore. During the few days I was home, it became obvious to me that something was wrong again. The wound was opening at the places the staples had been and weeping. It was also very painful. I went to my local emergency room where they took an MRI. The doctors there were alarmed at the condition of the wound, and I was airlifted back to Cleveland again.
After almost a week with a wound vac on, it was decided the wound was indeed infected, and another surgery was scheduled to try and clean it up. I had also been complaining about an area at the bottom right of my stomach that was becoming increasingly red and painful to the touch, and they said they would also look at that. When I woke up from this surgery, I had an open wound on my right side and a hole the size of a soccer ball in my lower right stomach. Apparently, a section of my stomach was left without a blood supply and the tissue had died. They couldn’t remove all of the infection from the wound either, hence the open wound on my right side. This was in November of 2014.
About a month later, when things were not healing as they had wanted and after pressure was put on them by my infectious disease doctor, they decided that they needed to cut a flap from my right leg to try and close the gaping hole in my stomach. Again, I went back to surgery.
I awoke this time, still with a hole in my right side and now, my right leg had been stripped of the top three inches of flesh which had been “flipped” to form a false stomach where the hole had been. My left leg had been used as the donor site for the skin graft to put over the mess that had once been my right thigh. It was a nightmare to say the least.
After a few more weeks in Cleveland Clinic, they decided they couldn’t keep me there any longer, but I still needed professional wound care. So they transferred me to Kindred Hospital in Cleveland. The infectious disease doctor there had to come three times a day to “clean out” my wound. This consisted of her going in up to her elbow three times a day with a Dakin’s wash to try and kill the infections that were still there. This went on for a month.
Eventually, she was happy that she had killed the infection, and I was sent home to recover. The wound has slowly healed over the last year, but in August of 2015 the plastic surgery team at Cleveland decided to try and close the last of it because I was in a lot of discomfort, especially at the spot where my drive line was. This surgery was not successful, and I still have an open wound there. I lived on IV antibiotics for almost a year.
In March 2016, I have since moved to Michigan, and strangely enough, my cardiologist at Spectrum Hospital in Grand Rapids, is once again Dr. Lee, my original doc from Cleveland. He is not happy with the way things have been left. I got another staph infection in the drive line just recently. It is being treated with antibiotics, and they are discussing the possibility of another surgery to finally close this wound later this year.
In my case, the LVAD saved my life, but it came at a huge cost.
Keith Poulloin is the author of From an Ass to a Nut and the Journey in Between available on Amazon.com.
Wound Care Resources thanks Keith for his incredible story. Patient stories are informative and give hope both to other VAD patients and to those who are considering VAD surgery. Everyone has their own story, and we would like to publish yours.
If you would like to share your VAD story, please contact me at [email protected].