4th September 2007
A bit of background:
A little over a year ago I was a happy, healthy, and only a bit overweight 46yo female. I was so healthy that after a few months of intensive testing I was able to donate a kidney to a friend. Face it - the doctors don't allow an unhealthy person to do such a thing. If they did, that would be another story altogether!
The (laparoscopic) removal surgery went without incident, or so I am told. I know afterwards I spent many hours in post-op, waiting for my vital signs to stabilize and to fully awaken.
The following day I walked, as I had been told to do. My first foray was to a bathroom. On the way I coughed - no warning at all. A burst of pain, and I was in agony after that. I did tell the nurses and doctors, but they brushed it off. Over the next 8 days I deteriorated in many ways. Unable to eat, walk very much, massive abdominal swelling and bruising, fevers, and so on. The doctors kept telling me I was not getting better because I wouldn't walk enough. Finally a CT scan was done, and showed an large incisional hernia with eviscerated small bowel. I was told I would be brought down to surgery at any time for repair. The next afternoon I had the hernia repaired. (9 days now since the kidney operation) After the surgery I was told that mesh had been used in the repair. I spent another week in this hospital, with surgical drains, NG tube for 2 days, etc, and was finally discharged as 'healthy'.
The next day I was admitted to my local hospital with severe infections. I spent another 2 weeks here treating the infections. This included iv antibiotics 24hrs a day, surgical drain again, and a PICC line to help with the iv's since my veins would collapse within a few hours of a new iv site. When the infections were under control I went home, where I continued iv therapy for 6 weeks, using vancomycin.
I had hoped this would be the end of everything. lol
Current complaints:
Over the past year I have made a dozen or so trips to the hospital ED for various acute complaints, and suffer many on a daily basis. ED trips included: severe leg pain (one leg, one spot) and a hard time walking. Diagnosis, possible bloot clot. I woke up one morning to see that one side of my face fell down (sounds strange, but that's what it looked like). Worrying about Bell's Palsy or stroke, off to the hospital. Negative for both of those, but a CT scan of my brain to rule out stroke showed a calcification on the right frontal lobe. Oh joy. I actually had an MRI for that a couple weeks ago, months later than I should have, and will go see the doctor soon for those results. I've suffered through severe abdominal pains, abdominal bloating so bad its painful, right upper quadrant pain, right lower quadrant pain, severe pains at the incisional site, and so much more. I've had numerous CT scans which show nothing. Tests show my kidney is functioning just fine. A trip last week for severe lower right quadrant pain (which actually resulted in a 24 hour admission) showed elevated white blood cells, low grade fever, dehydration, anemia and blood and bacteria in my urine. The doctor discharged me the next day with a 5 day prescription for Cipro after telling me the CT scan was fine so I didn't need to be in a hospital, that it was probably a urinary tract infection. If so I've had this one for a couple months; there was blood in my urine the trip before too, and no one gave me any antibiotics or seemed to think it was important.
I've gained 80 pounds or so over the last year, and I'm eating less than I was a year ago. Some days I don't even eat at all. I've been suffering for months from edema. If I stand or sit for any significant time during the day I have pitting edema in my legs, with my left leg being markedly more swollen than my right. I was put on a low dose of lasix 2 weeks ago to see if that helps. If I lay down for a long time it's as if the excess fluid all collects around my midsection. If I do lay down for more than 12 hours I have moderate to severe pain in the lower back area, but it's not my back. Somedays I can barely stand up, as my body wants to fold over and there is pain. The pain is always around the midsection. If I do stand or walk for more than a few minutes returning to a sitting position is very painful at first. There are many days when it's just too painful to even bother getting out of bed. Sometimes I simply cannot walk, the pain causes me to be unable to straighten up or walk on my own. I have a problem with bloating of the abdominal/stomach area. I bloat up as though I am full term pregnant. There are days when I am extremely gassy, and any movement causes a release of the gas. I've run fevers over 104 - or my temperature has been below 98 for days. When I was in the hospital last week my blood pressure hovered around 88/50, which seemed to upset the nurses.
There are so many other little things that I battle on a daily basis. We joke that each day is a new problem for me. Sometimes old problems vanish for a little while too. Such as the edema was absent for a month or so while the bloating started, then the edema returned and the bloating continued. I have had various pains in other areas that always go away after a while. I had an incident a few weeks ago where all the veins in one hand were visible, and that lasted half the day. Very strange, it was as though my skin had become totally transparent and I could see thousands of blue lines all over my hand and palm. Figure that one out!
It seems the doctors are focused on the darn CT scans. If nothing shows there, then I'm deemed healthy. Or healthy enough to wave off and ignore. I've heard of people faking symptoms for as long as they could to gain access to prescription painkillers, but I haven't asked for one or had one since I left the hospital a year ago. I don't smoke. I don't use recreational drugs. I don't drink. I have no significant medical history whatsoever. (Remember, it is highly unlikely I would have been allowed to donate a kidney had I had any medical issues) It's not in my head.
I almost forgot a few things: Here's another recent and weird problem. Any physical activity at all causes me to start sweating. The longer I do whatever it is, the more I sweat. My face at first, then my my whole body, and the sweat actually drips off me. (I know, gross.) If I make the bed, wash some dishes, put some clothes in the washing machine - anything brings it on. And it has nothing to do with the room temperature, as I do have air conditioning.
I have been told over the past year that I have gallstones. Oh joy. I also have a cyst on an ovary now; the doctor last week seems to think that might be causing problems. I have had episodes of clear fluid leaking from my vaginal area; not urine. My periods so far seem to be as normal as they ever have been.
Any geniuses out there who screamed "Eureka" while reading this? I'm so tired of going to the hospital for temporary relief of a symptom and feeling like a neurotic middle-aged woman a few hours later. What are the doctors missing? Should I be looking for something? Anything else I can tell you that makes it all click? Help?
A little over a year ago I was a happy, healthy, and only a bit overweight 46yo female. I was so healthy that after a few months of intensive testing I was able to donate a kidney to a friend. Face it - the doctors don't allow an unhealthy person to do such a thing. If they did, that would be another story altogether!
The (laparoscopic) removal surgery went without incident, or so I am told. I know afterwards I spent many hours in post-op, waiting for my vital signs to stabilize and to fully awaken.
The following day I walked, as I had been told to do. My first foray was to a bathroom. On the way I coughed - no warning at all. A burst of pain, and I was in agony after that. I did tell the nurses and doctors, but they brushed it off. Over the next 8 days I deteriorated in many ways. Unable to eat, walk very much, massive abdominal swelling and bruising, fevers, and so on. The doctors kept telling me I was not getting better because I wouldn't walk enough. Finally a CT scan was done, and showed an large incisional hernia with eviscerated small bowel. I was told I would be brought down to surgery at any time for repair. The next afternoon I had the hernia repaired. (9 days now since the kidney operation) After the surgery I was told that mesh had been used in the repair. I spent another week in this hospital, with surgical drains, NG tube for 2 days, etc, and was finally discharged as 'healthy'.
The next day I was admitted to my local hospital with severe infections. I spent another 2 weeks here treating the infections. This included iv antibiotics 24hrs a day, surgical drain again, and a PICC line to help with the iv's since my veins would collapse within a few hours of a new iv site. When the infections were under control I went home, where I continued iv therapy for 6 weeks, using vancomycin.
I had hoped this would be the end of everything. lol
Current complaints:
Over the past year I have made a dozen or so trips to the hospital ED for various acute complaints, and suffer many on a daily basis. ED trips included: severe leg pain (one leg, one spot) and a hard time walking. Diagnosis, possible bloot clot. I woke up one morning to see that one side of my face fell down (sounds strange, but that's what it looked like). Worrying about Bell's Palsy or stroke, off to the hospital. Negative for both of those, but a CT scan of my brain to rule out stroke showed a calcification on the right frontal lobe. Oh joy. I actually had an MRI for that a couple weeks ago, months later than I should have, and will go see the doctor soon for those results. I've suffered through severe abdominal pains, abdominal bloating so bad its painful, right upper quadrant pain, right lower quadrant pain, severe pains at the incisional site, and so much more. I've had numerous CT scans which show nothing. Tests show my kidney is functioning just fine. A trip last week for severe lower right quadrant pain (which actually resulted in a 24 hour admission) showed elevated white blood cells, low grade fever, dehydration, anemia and blood and bacteria in my urine. The doctor discharged me the next day with a 5 day prescription for Cipro after telling me the CT scan was fine so I didn't need to be in a hospital, that it was probably a urinary tract infection. If so I've had this one for a couple months; there was blood in my urine the trip before too, and no one gave me any antibiotics or seemed to think it was important.
I've gained 80 pounds or so over the last year, and I'm eating less than I was a year ago. Some days I don't even eat at all. I've been suffering for months from edema. If I stand or sit for any significant time during the day I have pitting edema in my legs, with my left leg being markedly more swollen than my right. I was put on a low dose of lasix 2 weeks ago to see if that helps. If I lay down for a long time it's as if the excess fluid all collects around my midsection. If I do lay down for more than 12 hours I have moderate to severe pain in the lower back area, but it's not my back. Somedays I can barely stand up, as my body wants to fold over and there is pain. The pain is always around the midsection. If I do stand or walk for more than a few minutes returning to a sitting position is very painful at first. There are many days when it's just too painful to even bother getting out of bed. Sometimes I simply cannot walk, the pain causes me to be unable to straighten up or walk on my own. I have a problem with bloating of the abdominal/stomach area. I bloat up as though I am full term pregnant. There are days when I am extremely gassy, and any movement causes a release of the gas. I've run fevers over 104 - or my temperature has been below 98 for days. When I was in the hospital last week my blood pressure hovered around 88/50, which seemed to upset the nurses.
There are so many other little things that I battle on a daily basis. We joke that each day is a new problem for me. Sometimes old problems vanish for a little while too. Such as the edema was absent for a month or so while the bloating started, then the edema returned and the bloating continued. I have had various pains in other areas that always go away after a while. I had an incident a few weeks ago where all the veins in one hand were visible, and that lasted half the day. Very strange, it was as though my skin had become totally transparent and I could see thousands of blue lines all over my hand and palm. Figure that one out!
It seems the doctors are focused on the darn CT scans. If nothing shows there, then I'm deemed healthy. Or healthy enough to wave off and ignore. I've heard of people faking symptoms for as long as they could to gain access to prescription painkillers, but I haven't asked for one or had one since I left the hospital a year ago. I don't smoke. I don't use recreational drugs. I don't drink. I have no significant medical history whatsoever. (Remember, it is highly unlikely I would have been allowed to donate a kidney had I had any medical issues) It's not in my head.
I almost forgot a few things: Here's another recent and weird problem. Any physical activity at all causes me to start sweating. The longer I do whatever it is, the more I sweat. My face at first, then my my whole body, and the sweat actually drips off me. (I know, gross.) If I make the bed, wash some dishes, put some clothes in the washing machine - anything brings it on. And it has nothing to do with the room temperature, as I do have air conditioning.
I have been told over the past year that I have gallstones. Oh joy. I also have a cyst on an ovary now; the doctor last week seems to think that might be causing problems. I have had episodes of clear fluid leaking from my vaginal area; not urine. My periods so far seem to be as normal as they ever have been.
Any geniuses out there who screamed "Eureka" while reading this? I'm so tired of going to the hospital for temporary relief of a symptom and feeling like a neurotic middle-aged woman a few hours later. What are the doctors missing? Should I be looking for something? Anything else I can tell you that makes it all click? Help?