C
Csq
My story is long.
Please forgive the digressions.
I became a member of this “club” 3 weeks ago. I’ve lurking here about a week. Here’s my story:
In 1992, I went to a church-sponsored health fair on a lark. The doctor there said I had an irregular heartbeat and that I should see a cardiologist as soon as possible. I would have blown him off if it were not for the fact that he was a cardiac surgeon. I managed to get an appointment at Deborah Heart and Lung center and went through a battery of tests. I was diagnosed with ventricular tachycardia, ventricular bigeminy and possibly mvp. I was hospitalized for several days, until my heart rhythm could be stabilized with Inderal. The hospital was a weird place. I didn’t feel like I needed to be in one. I felt fine, perfectly normal, but doctors were insisting that I was in bad shape. They couldn’t believe that I didn’t notice the rapid beat very much. One morning, an entire pack of cardiologists came rushing into the room. I was sitting in a chair, grading papers. I was baffled to see them. “Oh,” said one. “We expected to find you on the floor.” I had gone into a pretty bad string of V-tach, but was completely unaware of it.
The Inderal made me miserable. I had constant diarrhea and frequent bouts of severe abdominal pain. I called the cardiologist’s office repeatedly, saying that I could not go on like this. Finally, when I got to talk to the doctor directly, I told him that it wasn’t right. I was fine, but they made me sick. He finally agreed to bring me back in and switch my medication. Five tedious days later, I was on Verapamil and felt much better.
In 1995, my gallbladder burst, which required emergency surgery. There’s an 88% mortality rate with perforated gallbladders, but I made it through the nightmare. In 1997, I needed an incisional hernia repair.
Flash forward to 2005. One day, I was walking up my stairs carrying groceries, and I suddenly felt a searing burst of pain, much like the gallbladder pain. I went to the hospital and was admitted. The following evening, in a bizarre coincidence, my mother also suffered from severe abdominal pain. Hers turned out to be a perforated ulcer, for which she got emergency surgery. I was eventually diagnosed with a Bochdalek hernia, and the surgeon decided to combine that hernia repair with exploratory surgery, which I had done in January of 2006. It turned out that the incisional hernia required repair again. Mom, who had been in declining health for years after suffering a stroke a few years earlier, had difficulty bouncing back from her surgery. She ended up with CHF and got sicker and sicker. She was in and out of hospitals and nursing homes. Dad and I took care to be with her as much as we possibly could. In addition to being physically disabled and unable to walk, mom was also blind, so she was especially vulnerable and needed us to advocate for her. One day, while at Penn Presbyterian, mom crashed. Dad and I went in to say our goodbyes to her, but she slipped into a coma instead. So every day, we went to try and wake her up. Two weeks later, I learned that my mother had been unfaithful to my father, and the longstanding, tasteless “joke” that I was not my father’s child…was likely true. I was reeling. After that, whenever I was alone with mom, I fervently begged her to come back and tell me what was going on. Two weeks later, she died anyway.
A couple of months later, while visiting the doctor for a minor virus, I asked the doctor, while I was there, could he perhaps shed some light on a peculiarity I’d wondered about for some time. I asked why I sometimes spoke (or shouted, or sung) gibberish involuntarily. I mostly found it to be comic, but was a little worried, too. He sent me for a brain MRI, and when it came back revealing a mass, he sent me to a neurologist. The neurologist believed it was just an artifact, but sent me for retesting in early 2007. It was, in fact, a brain tumor…benign, but still!
So here, I was grieving the loss of my mother, trying to help my father cope with his loss, and trying to process a terrifying diagnosis. Then one afternoon, I get a phone call telling me that the patch used in my latest hernia repair had been recalled. I was pretty sure my patch was defective, since I was still having problems with pain, but I was told that it wasn’t possible. After another severe bout with abdominal pain, I went back to the surgeon. He claimed that the patch was holding just fine, but that another part of the hernia had opened up. He insisted that I had to combine the next surgery with a gastric bypass (now his specialty…hmmm). I was horrified. I insisted on getting another opinion. So, in December of 2008, I went in for my third hernia repair, with a different surgeon. When he opened me up, he discovered that indeed, the patch that the other surgeon insisted was perfect was actually folded over onto itself, and never could have worked right. The rest of the patches had disintegrated. He removed the remains of the patches and carefully sewed together the herniated areas. That repair has held! However, a week after surgery, a portion of the incision opened up, and the wound kept growing until one night, while I was in the back of the grocery store, trying to walk around and get exercise, the wound opened up almost completely. It was not painful, but…messy and humiliating. I was being seen at a wound care center by now, and the team tried to heal me up using a wound vac, but it simply was not doing enough fast enough. The doctors debated putting me in the hospital again, but were concerned about the risk of infection. Finally, they determined that going back into surgery to close the wound would be the best option. I was not dismayed at the prospect, to put it mildly, but agreed. The second surgery got the wound most of the way closed, but I still needed to be on the wound vac for a few more months. Then one night, I was awakened by the sound of loud thrashing underneath my bed. My cat, who had been my loyal companion throughout this ordeal, was having a seizure. So, I had to work in expensive vet visits along with my own medical care in order to manage what turned out to be her renal failure issues. Managing her meds, and her natural resistance to them, was as exhausting as managing my wound care! All told, I was out of work for five long, tedious months. I was relieved to go back to work at the end of April, 2009.
Three weeks later…oh, yes….
I had a follow up visit with my cardiologist because I’d had some breathing and arrhythmia issues post surgery, both times. I was startled when he said my pvc’s , which had been relatively stable at 30,000 per day (an astronomical amount, I know, but normal for me), had climbed to 31,000. He started talking about med changes and tests, and hospitalization, and I was like, “Whoa! No! No! No! I just got my life back. I can’t do this again. There’s only so much poking and prodding a person can take!” Fortunately, he agreed. He decided to give me the summer “off” before retesting me, just in case it was sheer stress driving the numbers up.
About this time, I started asking my pastor if he would agree to go have a cup of coffee with me. He said, “sure”, but never agreed to put a date on a calendar. This meeting request was not odd. Over the 12 years I’d been in the church, I’d developed a friendship with him. We had coffee together…maybe 4 times. I’d babysat his kids, had dinner with his family numerous times, and we often chatted via email and IM. I even gave his daughter and son-in-law a rock bottom deal on renting the second apartment in my duplex, and they had lived there more than a year. I tried to be patient with him, knowing that it was a big church, that he was overwhelmed with additional responsibilities since taking over the role of senior pastor about five years ago. But I grew anxious as the summer passed, because he wouldn’t agree to find a date to meet with me. He kept brushing me off, saying he’d get to me. I got creative and started giving him humorous “coupons” entitling him to coffee with me. He got the joke and laughed, but didn’t get that in being delicately persistent, I was trying to tell him something important. Why didn’t I just ask him directly? Because, after being met with crisis after crisis, I was worried about being a drain. I even told him that I wanted to meet with him because I didn’t want to have to have a crisis in order to meet. He told me he didn’t have time for non-crisis meetings, yet one Sunday, while preaching, I noticed that he was talking about having non-crisis meetings with others. The following week, I presented him with a coupon again. He looked at it and said, “You don’t have to do this.” I said, “Apparently, I do.” He said, “I’ll do the best I can, but I’m not making any promises!”
Disgusted, I gave up and walked away from my church home. Five days later, I had to euthanize my poor cat. Two weeks after that, my heart was retested, and it was discovered that I’d gone to 34,000 pvcs over the summer. I am not a candidate for ablation, because apparently, there are too many spots where the errant beats originate. My cardiologist sent me for a TEE that revealed severe MVP and a bicuspid aortic valve. Since electrical issues and valve issues are not related, I had to be referred to a valve cardiologist. It was the valve cardiologist who informed me that I was going to need open heart surgery to repair the mitral valve. My task now is to consider possible surgeons and hospitals. I’m leaning toward going to University of Penn because I feel I should stay closer to my support base. This Friday, I am going in for the cardiac catheterization. I’ve been reassured that it’s a safe test, and not that bad…but at this point, after all I’ve been through, there mere act of putting on a hospital gown, though not painful, makes me weep. I don’t want to do this anymore. I don’t want to be a science experiment anymore. I am tired of the endless indignities and humiliations that are part and parcel of being a patient. But the alternative is to die in the same slow, horrifying manner as my mother did. It’s not much of a choice. Your stories reassure me that it’s worth doing, that the surgery has potential to improve my life in ways I can’t even comprehend…but at the same time….my heart is broken literally and figuratively…and I’m worn out from it.
I returned to church the day I was diagnosed, two months after leaving. I was ignored by the pastor as I wept in front of him. Later, after a friend emailed the church with a prayer request on my behalf, I sent him a conciliatory email, explaining my frustration. No response. I continue to go to church. I continue to be ignored. A place that once meant safety to me, a place I considered to be a home is now a place where I feel uneasy, unwelcome. I stay because I do have friends there who are supportive and caring.
So, as you can see, I really need the understanding and support that this group offers.
If you’ve reached the end of this terribly long post (sorry!), you’ve already done me a kindness.
Thank you.
--C2
Please forgive the digressions.
I became a member of this “club” 3 weeks ago. I’ve lurking here about a week. Here’s my story:
In 1992, I went to a church-sponsored health fair on a lark. The doctor there said I had an irregular heartbeat and that I should see a cardiologist as soon as possible. I would have blown him off if it were not for the fact that he was a cardiac surgeon. I managed to get an appointment at Deborah Heart and Lung center and went through a battery of tests. I was diagnosed with ventricular tachycardia, ventricular bigeminy and possibly mvp. I was hospitalized for several days, until my heart rhythm could be stabilized with Inderal. The hospital was a weird place. I didn’t feel like I needed to be in one. I felt fine, perfectly normal, but doctors were insisting that I was in bad shape. They couldn’t believe that I didn’t notice the rapid beat very much. One morning, an entire pack of cardiologists came rushing into the room. I was sitting in a chair, grading papers. I was baffled to see them. “Oh,” said one. “We expected to find you on the floor.” I had gone into a pretty bad string of V-tach, but was completely unaware of it.
The Inderal made me miserable. I had constant diarrhea and frequent bouts of severe abdominal pain. I called the cardiologist’s office repeatedly, saying that I could not go on like this. Finally, when I got to talk to the doctor directly, I told him that it wasn’t right. I was fine, but they made me sick. He finally agreed to bring me back in and switch my medication. Five tedious days later, I was on Verapamil and felt much better.
In 1995, my gallbladder burst, which required emergency surgery. There’s an 88% mortality rate with perforated gallbladders, but I made it through the nightmare. In 1997, I needed an incisional hernia repair.
Flash forward to 2005. One day, I was walking up my stairs carrying groceries, and I suddenly felt a searing burst of pain, much like the gallbladder pain. I went to the hospital and was admitted. The following evening, in a bizarre coincidence, my mother also suffered from severe abdominal pain. Hers turned out to be a perforated ulcer, for which she got emergency surgery. I was eventually diagnosed with a Bochdalek hernia, and the surgeon decided to combine that hernia repair with exploratory surgery, which I had done in January of 2006. It turned out that the incisional hernia required repair again. Mom, who had been in declining health for years after suffering a stroke a few years earlier, had difficulty bouncing back from her surgery. She ended up with CHF and got sicker and sicker. She was in and out of hospitals and nursing homes. Dad and I took care to be with her as much as we possibly could. In addition to being physically disabled and unable to walk, mom was also blind, so she was especially vulnerable and needed us to advocate for her. One day, while at Penn Presbyterian, mom crashed. Dad and I went in to say our goodbyes to her, but she slipped into a coma instead. So every day, we went to try and wake her up. Two weeks later, I learned that my mother had been unfaithful to my father, and the longstanding, tasteless “joke” that I was not my father’s child…was likely true. I was reeling. After that, whenever I was alone with mom, I fervently begged her to come back and tell me what was going on. Two weeks later, she died anyway.
A couple of months later, while visiting the doctor for a minor virus, I asked the doctor, while I was there, could he perhaps shed some light on a peculiarity I’d wondered about for some time. I asked why I sometimes spoke (or shouted, or sung) gibberish involuntarily. I mostly found it to be comic, but was a little worried, too. He sent me for a brain MRI, and when it came back revealing a mass, he sent me to a neurologist. The neurologist believed it was just an artifact, but sent me for retesting in early 2007. It was, in fact, a brain tumor…benign, but still!
So here, I was grieving the loss of my mother, trying to help my father cope with his loss, and trying to process a terrifying diagnosis. Then one afternoon, I get a phone call telling me that the patch used in my latest hernia repair had been recalled. I was pretty sure my patch was defective, since I was still having problems with pain, but I was told that it wasn’t possible. After another severe bout with abdominal pain, I went back to the surgeon. He claimed that the patch was holding just fine, but that another part of the hernia had opened up. He insisted that I had to combine the next surgery with a gastric bypass (now his specialty…hmmm). I was horrified. I insisted on getting another opinion. So, in December of 2008, I went in for my third hernia repair, with a different surgeon. When he opened me up, he discovered that indeed, the patch that the other surgeon insisted was perfect was actually folded over onto itself, and never could have worked right. The rest of the patches had disintegrated. He removed the remains of the patches and carefully sewed together the herniated areas. That repair has held! However, a week after surgery, a portion of the incision opened up, and the wound kept growing until one night, while I was in the back of the grocery store, trying to walk around and get exercise, the wound opened up almost completely. It was not painful, but…messy and humiliating. I was being seen at a wound care center by now, and the team tried to heal me up using a wound vac, but it simply was not doing enough fast enough. The doctors debated putting me in the hospital again, but were concerned about the risk of infection. Finally, they determined that going back into surgery to close the wound would be the best option. I was not dismayed at the prospect, to put it mildly, but agreed. The second surgery got the wound most of the way closed, but I still needed to be on the wound vac for a few more months. Then one night, I was awakened by the sound of loud thrashing underneath my bed. My cat, who had been my loyal companion throughout this ordeal, was having a seizure. So, I had to work in expensive vet visits along with my own medical care in order to manage what turned out to be her renal failure issues. Managing her meds, and her natural resistance to them, was as exhausting as managing my wound care! All told, I was out of work for five long, tedious months. I was relieved to go back to work at the end of April, 2009.
Three weeks later…oh, yes….
I had a follow up visit with my cardiologist because I’d had some breathing and arrhythmia issues post surgery, both times. I was startled when he said my pvc’s , which had been relatively stable at 30,000 per day (an astronomical amount, I know, but normal for me), had climbed to 31,000. He started talking about med changes and tests, and hospitalization, and I was like, “Whoa! No! No! No! I just got my life back. I can’t do this again. There’s only so much poking and prodding a person can take!” Fortunately, he agreed. He decided to give me the summer “off” before retesting me, just in case it was sheer stress driving the numbers up.
About this time, I started asking my pastor if he would agree to go have a cup of coffee with me. He said, “sure”, but never agreed to put a date on a calendar. This meeting request was not odd. Over the 12 years I’d been in the church, I’d developed a friendship with him. We had coffee together…maybe 4 times. I’d babysat his kids, had dinner with his family numerous times, and we often chatted via email and IM. I even gave his daughter and son-in-law a rock bottom deal on renting the second apartment in my duplex, and they had lived there more than a year. I tried to be patient with him, knowing that it was a big church, that he was overwhelmed with additional responsibilities since taking over the role of senior pastor about five years ago. But I grew anxious as the summer passed, because he wouldn’t agree to find a date to meet with me. He kept brushing me off, saying he’d get to me. I got creative and started giving him humorous “coupons” entitling him to coffee with me. He got the joke and laughed, but didn’t get that in being delicately persistent, I was trying to tell him something important. Why didn’t I just ask him directly? Because, after being met with crisis after crisis, I was worried about being a drain. I even told him that I wanted to meet with him because I didn’t want to have to have a crisis in order to meet. He told me he didn’t have time for non-crisis meetings, yet one Sunday, while preaching, I noticed that he was talking about having non-crisis meetings with others. The following week, I presented him with a coupon again. He looked at it and said, “You don’t have to do this.” I said, “Apparently, I do.” He said, “I’ll do the best I can, but I’m not making any promises!”
Disgusted, I gave up and walked away from my church home. Five days later, I had to euthanize my poor cat. Two weeks after that, my heart was retested, and it was discovered that I’d gone to 34,000 pvcs over the summer. I am not a candidate for ablation, because apparently, there are too many spots where the errant beats originate. My cardiologist sent me for a TEE that revealed severe MVP and a bicuspid aortic valve. Since electrical issues and valve issues are not related, I had to be referred to a valve cardiologist. It was the valve cardiologist who informed me that I was going to need open heart surgery to repair the mitral valve. My task now is to consider possible surgeons and hospitals. I’m leaning toward going to University of Penn because I feel I should stay closer to my support base. This Friday, I am going in for the cardiac catheterization. I’ve been reassured that it’s a safe test, and not that bad…but at this point, after all I’ve been through, there mere act of putting on a hospital gown, though not painful, makes me weep. I don’t want to do this anymore. I don’t want to be a science experiment anymore. I am tired of the endless indignities and humiliations that are part and parcel of being a patient. But the alternative is to die in the same slow, horrifying manner as my mother did. It’s not much of a choice. Your stories reassure me that it’s worth doing, that the surgery has potential to improve my life in ways I can’t even comprehend…but at the same time….my heart is broken literally and figuratively…and I’m worn out from it.
I returned to church the day I was diagnosed, two months after leaving. I was ignored by the pastor as I wept in front of him. Later, after a friend emailed the church with a prayer request on my behalf, I sent him a conciliatory email, explaining my frustration. No response. I continue to go to church. I continue to be ignored. A place that once meant safety to me, a place I considered to be a home is now a place where I feel uneasy, unwelcome. I stay because I do have friends there who are supportive and caring.
So, as you can see, I really need the understanding and support that this group offers.
If you’ve reached the end of this terribly long post (sorry!), you’ve already done me a kindness.
Thank you.
--C2
.
