By Peter Maerkel
Hello, my name is Peter Maerkel. I am 40 years old at the time of this writing. I have POTS. I was diagnosed October 20, 2006 at St. Francis Hospital in Hartford, CT. This is my story.
I have been overweight all my life, starting shortly after puberty. I am 6’5” tall, and in August 2005 I weighed 412 lbs. I was out of work from my lucrative job at Kaman Aerospace as an NDT inspector. (I did x-ray and ultrasound on aerospace components.) I was on Social Security Disability for two herniated discs in my back. I had terrible sleep apnea (93 episodes in an hour during my sleep study). I was also pre-diabetic and had been told my knees would need to be replaced sooner than normal due to my weight. Yes, I had tried every diet known to man. Nothing worked. So, I started down the road to a gastric bypass.
I remember my weight in August 2005 because that was when I signed the documents to start the gastric bypass process, and they needed my exact weight. Well, on December 29, 2005 I went under the knife. The surgery went extremely well. There were some minor issues, but nothing to worry about-- so I was told. You see, I had done a ton of research online and asked a bunch of (what I thought were) well informed questions. Even my surgeon was impressed and told a medical student, “This is the type of patient you want-- one that is well-informed.” I did not go into this blindly. I had many discussions with my PCP (at the time), and he told me, “If I were sitting where you are, I would have the surgery.” He told me, “If you can get over the risks – death being the big one, it will be OK.” This was partly true, partly not, as I now know. You see, in all the research I had done, I had never once read (or heard) about getting potential nerve damage or POTS from losing weight so fast. Now I know.
After the surgery, the weight started flying off. I was offered a full-time sales job by my brother-in-law. I jumped at the chance. My back was doing great because I had lost about 90-100 lbs already (which put me at around 300 lbs). During this time, my regular post-op follow-up blood work started showing some vitamin & blood deficiencies. I won’t bore you with the details, but I was growing concerned. My wife, who was finishing her second year of nursing school at the time, was concerned too. I brought these concerns to my doctor and was told that I had nothing to worry about. I had adjusted my vitamin intake per the dietitian’s instructions and had gotten the OK from my doctor that all was well. So, I went off into my new career.
In late May, just about a month after I had returned home from sales school in Atlanta, GA, I heard my daughter fall from her top bunk and hit the floor hard (big girls don’t need the bar to hold them in). Well, after getting in there and finding her sobbing, I stood up and felt very faint. I reached for the bar I had reinstalled but didn’t make it. I don’t even remember hitting the floor. The next thing I remember, I woke up to my oldest daughter screaming at the top of her lungs, “Daddy! Daddy!” Apparently, I had been unconscious about 30-45 seconds and unresponsive with my eyes wide open. When I got to my feet, I told my wife and the paramedics that I felt OK. I was not going to the hospital for fainting. No way! They told me that they had to report this to my PCP and that I should follow up with him as soon as possible. I did.
When I saw my PCP, he ordered a Holter monitor for me. The test results took a while to come back, and I was told that it was basically normal. As I later discovered, this was not exactly true. The averages were normal but there were many abnormalities in it. During the month that I waited for the report to come back, I had several near syncopal episodes which I discussed with my PCP. I was told at the time, “When you feel lightheaded or dizzy, put your head below your heart.” Yeah, I thought, like you can live like that.
Well, that is what I did. I followed my doctor’s instructions and proceeded to get on with my life and great new career. The money was great, and I was on track to be one of the top new salespeople in the entire company (part of a multi-billion dollar company). I was living the American dream-- notice the past tense. By the end of September, life as I knew it was over.
I had gotten down to 226 lbs by early September 2006. I had lost a total of 186 lbs since August 2005. I was virtually half the man I had been. I had some problems with vomiting. I was sent to see a GI doctor at St. Francis in late August, and they found my pouch had some scar tissue that they just expanded with some balloon-like devices. By Labor Day I had a new (new to me) truck, and I thought life was great. There was no more hand-to-mouth existence on SSDI. I had satellite TV and was working my butt off, literally! So, as a new person, I did some things I had not dreamed I would ever do again. Now I could go to the fair and ride on rides, like I did in my youth. This time I did it with my children. I felt great, at least for a while.
The first ride was not too bad; the second and last rides did me in. When I got off of one ride (that flips you around head over heels) I felt sick. I thought this was natural. I told myself that what I was feeling was totally normal. It wasn’t. I had the effects for about five hours after the ride.
By mid-September I was in an inpatient psyche ward at my local hospital for anxiety and suicidal thoughts. It was during that first ER visit and subsequent inpatient stay that doctors started to notice rapid BP and HR changes when I stood up. I was discharged and thought the worst was over. Boy, was I wrong. It was just the beginning of my troubles.
I went back to the ER about one week later for chest pressure/pain and head rushes. It felt like blood was just pulsing through my head! I was really in bad shape. My PCP told me that they might have to put in a pacemaker because my HR was so low. It had gotten down to 32 beats per minute. I was throwing PVCs all over, and at one point they thought I had heart block too. The decision was made to implant the pacemaker and “fix the pump.”
The arterial lead moved after the first surgery, so I had to go back for a second surgery to fix it. After about three days in the ICU they were going to send me home, but they were still concerned about the massive BP drops I had when I stood up. I believe my blood pressure got down into the 70/30 range at one point, so they gave me fluids to see if that would help. They gave me 1000 cc of saline and had me stand up. That was a big mistake. My face, as I was told, went white as a sheet.
I went to another hospital to see if they could figure out what was wrong with me. The hospital I went to was the same one that had performed the gastric bypass – St. Francis.
I stayed there about three days and had many tests done. Their conclusion: I was starving to death due to the gastric bypass. Of course, since they were doctors, they called it “nutritional deficiency.” They ordered me to see their in-house dietitian and work up a meal plan that included 100 grams of protein per day. I was out of the hospital in less than a week.
Dizziness, lightheadedness, chest pressure/pain, and wild BP changes sent me back to the ER again. I was really stumping the local doctors. It would almost have been funny if I had not been so sick. During my second day in the ICU, I had a non-sustained VT run of about 37 beats. The VT triggered another trip to St. Francis for a heart catheterization to check for blockages. No blockages were found. However, this time I had a different cardiologist than I had on my first trip. Aside from the doctor who said I was starving to death, a whole team was on my case for awhile. I was starving, but the starvation was only part of the problem.
My new cardiologist was really on the ball and pieced together what he thought was wrong with me. He ordered a HUT (Head Up Tilt) test for me. This was one test for which I did not want to have a positive result. Of course, I did. “It is positive for POTS.” my doctor said. My next question was one that many have asked: “What is POTS?” For the next half an hour, I found out that this little acronym would consume my life for the next few months. October 20, 2006 was a day that changed my life.
From the day this all started, I have seen approximately 15 doctors in two different states. The reason for that is quite simple: insurance companies can be a great help but can really hamper care if you have to be “in network” for coverage. Don’t get me wrong, I am extremely grateful to have insurance. It just hurts that you have to fight to get covered when you should not have to.
At this moment, I am awaiting a report from my team of neurologists from University of Massachusetts Hospital in Worcester, MA. They are trying to determine if there are any other tests that need to be run or therapies to try. I was on two different drugs that did some good but had side effects that were not good for me at all. I also tried the compression stockings too. Let me tell you, as a man, putting on pantyhose is pretty weird, to say the least! I tell my friends that I am one of the few men you will ever meet who has worn a feminine napkin (as a wound dressing for groin lymph node removal in 2000) and pantyhose. I am getting stronger. However, I can echo the words of the founder of DINET, Michelle Sawicki: “I am not the same as I used to be.” Not by a long shot. I have no real stamina. I still get lightheaded. I get symptoms such as dizziness, chest pain, BP changes, tachycardia, bradycardia, neuropathy in my hands and feet, blood pooling (my hands are freezing typing this), headaches (not as bad now), sleep problems, and other symptoms too. And that is on a good day. I am walking and doing most of the housework now. That is a far cry from what I could do just three months ago!
The real downside to this is my family’s suffering and my shaken faith. This has really shaken my faith in Christ. It has not destroyed it, and I am doing better now. But it has been a long haul, with more to go. My family has really suffered. My dad has been helping us with money to keep our house. Believe me--that is humbling and humiliating at the same time.
I have had to fight about three or four insurance issues. These issues range from disability insurance for my truck, which I lost and had to give back to LTD (more humiliation), and LTD, which I lost too. I am still fighting to get back on SSDI, which I was told would be no problem because they never declared me “not disabled.” I was just working while I had it. I have gotten some money from them for the past two months. However, I stopped working in October 2006 and did not get any money from them until early April 2007. Then they wanted it back. Someone had coded me “in prison.” Again, it would almost be funny if it wasn’t so sad and I was not so ill. I now have my congressman’s office working on it too. Hopefully I will have an answer about it today. Further, I have had to ask for food stamps and heating assistance this year too. More humiliation!
What really hurts is that my wife and I have grown apart, and I can’t play with my children like I used too. Before this happened I was a blue belt in karate. I had a new job and a new (to me) truck. I thought I was moving on to a new me. Well, that part is true. I have a new me---but I want a trade-in!