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
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?
well, it sure sounds like you have been through a lot!! I don't have any wise reccomendations. The only thing I think of is Kidney issues but you said that your kidney is working okay. Hope you can figure it out soon.
I am so sorry you are suffering like this. My one and only thought is the mesh used during yout hernia repair. I am a chronic pain patient since my incisional hernia repair. I just had the mesh removed after two years of severe pain and gastrointestinal issues. My pain is not gone, but better. However, I still have a "deformity" in the abdominal muscle that will require more surgery.
Also, I developed fibromyalgia after the trauma of surgery and infections. I would look into it. It stinks, and I am so sorry that I don't have better answers. However, I would go to the nearest teaching hospital that will see you. You KNOW something is wrong. You didn't make your body do all of these things. It can be so frustrating that you just want to bang your head against a wall, but don't give up.
I had CAT scans that were negative for 2 years before someone finally saw that the mesh had pulled apart from the abdominal wall, and the tacks were free floating in surrounding tissue. As far as pain meds, I went from someone who never took meds, to having to go to a pain specialist. It is the only thing that had allowed me to have any resemblance of life before the surgery. You shouldn't suffer because they don't know what's wrong.
Wow. You've been through quite a bit yourself. I can identify with your symptoms; the only major differences being you've suffered for much longer, and I had resorbable mesh used in my surgery. Theoretically, after a year there is nothing left to remove from me - it should have all been absorbed by my body and replaced with my own tissues. Other than that I know where you're coming from.
I am beyond frustrated. A broken bone or open wound is easy to diagnose. NO one questions those. When the doctors can't see anything wrong they automatically assume that nothing is wrong. I wonder if I should ask a doctor for pain meds or if doing so will make them skeptical of me and cause them to think that's my purpose. I guess I have to just keep reminding myself that the doctors also thought the original pain was in my head too. Seriously, the doctors had gone so far as to send a psychiatrist in to speak with me about my refusal to cooperate in my recovery; i.e. why I would not do laps around the floor. Telling him that I wasn't walking because it hurt to move got me nowhere. I feel I'm back at that point. If the doctors can't see it it doesn't exist.
I thank you so much for your thoughts, and I will do some checking into the possibility of fibromyalgia. As for a teaching hospital, I had both of my operations in a major one in NYC, and the secondary hospitilization was in our local hospital, also a teaching hospital. However the one bright spot now is that I'm going to a hospital sponsored clinic for evaluation, so I'm seeing an eager resident who might actually care and not be jaded by years of monotony. There just wasn't a specific doctor I could think of going to see, so the clinic idea seemed logical.
If anyone else has input, please speak up! Who knows, you might have figured it all out and be able to put those puzzle pieces together!
Well, as the old saying goes "No good deed goes unpunished..."
But seriously, how is the person who received the kidney? Because if she is having problems too, that could be part of the answer. Perhaps something was done in surgery that was not right.
And I can't see how a person who is as sick as you are would be Gaining weight instead of Losing. however, since you are gaining, it seems it is water weight and not fat.
Which means the one kidney left cannot do the job of filtering out the impurities like it used to with two kidneys. You sure do need to go to different doctor. Call up that television program Mystery Diagnosis. perhaps they will showcase you and find you a doctor that can help.
I know that sounds far fetched but they showcase many strange ailments.
you were being a saint ---giving away a kidney and you got slammed for it. There's just no justice in that!!! good luck to you.
My recipient is fine. He had some trouble at first staying hydrated, but only because he wasn't used to drinking so much and had a hard time keeping up with the demands of his new kidney. I joked that he needed to give it a couple cups of coffee a day or it was going to make his life miserable. Other than that he's just great. I'm sure something was done incorrectly in surgery - to me.
I agree, the weight is mostly fluid. Even the doctor agrees. But it's not like I can just lay in the sun for a few weeks and have it evaporate. Even Lasix can't do the job all at once, or my kidney will be overworked.
Mystery Diagnosis... hmm.... lol
As for being a saint, I don't look at it that way. I had an extra kidney, he was dying for lack of a single good kidney. Donating a kidney, or in simple terms the loss of one of my kidneys would not cause these problems for me. Many people live with just one kidney fine. Like him! Some are born with only one and never even know. I firmly believe it was something that happened during the removal of the kidney, not the loss of the kidney itself.
I sure hope this intern can help. Are you absolutely sure the mesh was absorbable? I am only asking because in all my research, I have never heard of a mesh that absorbs. Do you have your surgical reports? I would get the immediatly, and all the records from the hospital. I could not believe all the things they didn't tell me! Keep us posted!