Cindi
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My name is Cindi and this is my (pots) story. 10/07My story began in 1996 when I was diagnosed with Hodgkin disease. I was thirty eight years old and had my first radiation treatment on my thirty ninth birthday. Happy Birthday to me! I was to have forty three treatments in all. Twenty three upper and twenty lower. From cheek bones to below belly button, front to back, side to side. During the course of treatments I would often feel really horrible. I thought it was the cancer and the treatments at the time. Little did I know there was something else lurking. One day as I was getting on the table for a treatment I remember I felt especially bad. My radiation nurse reached down and checked my pulse. She said to me, “Cindi, your pulse is just speeding away”. That was the beginning. I finished my treatments and went into remission. I returned to work. During this time I was still experiencing a racing heart rate, lightheadedness, weakness, insomnia, fatigue, flushing, and many other things. I just assumed it was because of the cancer, the treatments, or side effects from medications I was taking. The radiation did destroy my thyroid by the way. I also assumed that may of had a lot to do with how I was feeling. I was put on a thyroid supplement, but still felt awful.
Then, in 1998 I was diagnosed again with Hodgkin disease. It had returned and with that diagnosis came chemotherapy treatments. I was not looking forward to this, but who does? I underwent eight rounds of chemotherapy which is actually sixteen treatments. I had the treatments every two weeks over a period of eight months. Every second night following a treatment I had tremendous, and horrific chest pain. It never failed. It was like clock work. It felt like there was an elephant standing on my chest. All I could do was sit up in bed and let the tears roll. This would usually last about an hour on average. I reported this to my oncologist, who eventually took me off of one of the drugs that was thought to be causing this. I was taking four to begin with. I was still having the bouts with my heart racing and many other (pots) symptoms at the time. My oncologist had me wear the holter monitor. He called me at 9:30 at night the day he got my results in. He had asked me what I had been doing that day. The only thing I had done was lie on the couch only getting up to use the bathroom. He informed me my heart rate was over 150 several times during the monitor test. He diagnosed me S.V.T. I continued my treatments minus the one drug, and once again was cancer free.
After he diagnosed me with S.V.T. I started seeing a cardiologist in my town who performed the tilt table test on me. As best I can remember, he told me that my blood pressure would drop and my heart rate would increase upon standing. He never said anything about pots, (I’m sure he didn’t know). He did however put me on medications. I believe it was florinef and proamitine. Toporol was in the mix too at some point. All I know is I felt worse and worse!! My blood pressure was up and down and my heart rate was always up. I went off those medications eventually. I felt like he was honestly trying to kill me or something. I know he wasn’t but that’s what it felt like. I had the racing heart, the sweating, the lightheadedness, tingling of my head, weakness in my legs, flushing of my face, insomnia, depression, anxiety, and extreme fatigue just to name a few!
I would continue to “complain” to my oncologist (a new one by the way), how terrible I was feeling. The tears would flow with a capital F every time I saw him or any of my other doctors. I would explain ALL my symptoms to all of them, looking for answers, wondering if the cancer or chemo had something to do with it? I had finished all treatments at this time and was in remission once more. My oncologist would tell me, “Cindi, you don’t have cancer anymore, you’re not taking treatments anymore, you ought to be feeling good”. Obviously it wasn’t a cancer or treatment thing. I actually felt worse after the treatments, cancer free, than I did while I had the cancer and was taking treatments. That’s when I began to feel they thought it was all in my head. I knew it wasn’t! My family doctor put me on antidepressants. Haven’t we all been down that road? It seemed like that was always his answer to everything. I even had one doctor I went to during his absence tell me he’d pray for me. That’s all well and good, but I needed medical help along with it! I was sure they all felt like I was wanting sympathy for what I had been through. There couldn’t have been anything further from the truth. I wanted answers on why I felt like I did.
At one point I had a lot of trouble with shoulder and hip pain. I ended up going to a Rhumetologist who diagnosed me with fibro myalgia on top of everything else. He wanted to treat me but insisted I have my “heart condition” checked out first. My heart rate was 160 in his office one morning. He was too scared to prescribe medicines until I had it checked out. That’s what prompted me to seek further help. Eventually, I got my family Dr. to refer me to a specialist I had heard of. She looked at my previous tilt table test and diagnosed me with pots right off the bat. The chemicals in the radiation and chemo was the culprit. The only thing that was explained to me though was the fast heart rate, and drop in blood pressure from standing. The othostatic intolerence. I was not really informed or aware of all the other symptoms!! Had that been explained I would not of had the feeling or thoughts that I must be going crazy!! Maybe if my doctors understood pots they wouldn’t have thought the same about me also.
I did try to return to work. I wanted to work. I have always been independent and self sufficient and wanted to continue to be that way. Oh, during this ordeal I did receive disability from social security, but wanted to work anyway. My family doctor advised physical therapy treatments before I returned to get me built back up. During P.T. I would have to wear a heart monitor. I would often go in, put on the monitor, and my heart rate would be too high to even begin. They would have me rest before I even got started. I did my time at P.T. for several weeks and did return to work on a trial basis. I even worked without pay because I was receiving a disability check at this time. I tried and I tried, but I failed. I just couldn’t do it. I was still having trouble with the elusive sleep, the fatigue, and all the other symptoms of pots. I walked around feeling intoxicated, or like I was sleepwalking. I would actually bump into the walls while going on break. I felt like I could of had a starring role in “Night of the living Dead”. I left work and decided to go on disability. I didn’t feel I had a choice. I just couldn’t do it. I have been on disability officially since 2001. I was recently reviewed for my continuance, and what a battle that was! Their thinking was I got disability based on Hodgkin disease (which I no longer had), so I should be fit and able to return to work. Honest mistake, I guess. Needless to say, I was denied!! What was I going to do now? The only thing I could do was fight it. I had to hire a lawyer who said, “You look too good to be disabled”. Remember, at this point I hadn’t realized the ramifications of pots and what it does to a person. I had the diagnosis in my charts, but thought nothing of it. My lawyer referred me to a psychiatrist which I am still seeing to this day. I went to my hearing before a judge to determine my disability status. I did get my benefits continued, but will be evaluated again in two years. The reason it was continued though was based on the psychiatrist reports concerning insomnia, fatigue, depression, and anxiety, not from pots. Pots was more or less pushed under the rug and never discussed during my (battle), or hearing with social security. My problems are TOTALLY POTS!! I’m convinced of that now that I have the facts of the condition and all it’s symptoms. I’d like to thank Sarah for finding me and making me aware of the symptoms of pots. It has helped me see I was right all along. I’m not crazy, I am sick, and this is real. Thanks Sarah.
I am better at this time but still suffer from many of the symptoms. I continue to have major fatigue and have to make myself do everything I do. Getting up, getting dressed, having to go somewhere to do something is still a big chore for me!! I try and do everything I must do in one day so I don’t have to get out of my p.j.’s the next. If I do a lot one day, the next several days are spent recouping. My housework is sadly lacking, and to put it bluntly, I just feel like a big slug most of the time. (That’s not me, and not what’s in my make-up of how I truly am). I also have the exercise intolerance, and brain fog along with my other symptoms. I try to be upbeat about my situation, but it is frustrating when in your heart all you want is to be like you once were! Dynamic, and able to do just about anything you wanted! I am still seeing my shrink to keep it on the record for my next bout with social security. I will though however, during my next assessment with them try to explain pots and all the many symptoms, and try to get them to see I am not crazy, or a hypochondriac, but that I do have a legitimate problem.
Thank you all for reading my story. If anyone out there has had a diagnosis of pots based on chemotherapy treatments, please contact me. I’d love to talk to you.
Sincerely, Cindi
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big hugs to you!