Not so long ago I noticed that my left foot was swelling and it was starting to get painful. On the Sunday of labour-day weekend, we had two friends and their one year old over for a bbq. It was a nice time and a great way to spend part of the long weekend. It was while we were visiting that my food started to get more painful and more swollen. By the time they left it was very painful for me to put my full weight on my left food. We talked about my situation and I was determined to do what I could to prevent going to a hospital.
In my life, I have spent probably over a year in hospital beds and have survived. I will just about do anything to avoid hospitals. I iced my foot, alternating with hot water and ebsom salts. I kept my foot elevated to no avail. By Monday my food had become so swollen and painful that any movement became a self torture and so we set off to ER about mid day.
Through all of my years dealing with multiple diagnosis, I have never had cellulitis infections until I was exposed to a product called Bio-Alcamid. Since that time I have had many such infections and even a surgery. I am afraid that with these ongoing infections, the bacteria, is becoming resistant to treatment, yet that does not seem to bother doctors.
With all of these infections, my general well-being is greatly challenged, and I know that when I go to ER’s that I will be treated to contempt and patronized by some doctors. We left for the hospital mid-day. I was triaged, and sent through to to be seen. The doctors, not having time to hear my complex story, seemed confused. I was thinking that maybe I had injured or strained a tendon that would be the best-case scenario for me. It was too hopeful.
I was hooked up to an IV (told that it would need to be changed in three days) and given NACL anti biotic and ‘HYDROMORPHONE”. It felt amazing to have some of the pain relieved but my concerns were not so settled. Some blood samples were taken. I had an ultra sound and also some X rays. My bones were intact, my ligaments showed no sign of strain and so by elimination, it was yet another bacterial infection. I can not convey to you how terrifying this was for me to hear. It was the absolutely worst diagnosis I could imagine.
It was the Monday of a long weekend, home services could not be set-up. I would have to return to hospital early the next morning for another treatment and to have care arranged. Before I left the hospital I had been administered two doses of anti biotic and pain medication. I was sent home with a prescription for pain pills. Thankfully our neighbour was around and was able to drive us home with a stop at a pharmacy to have the prescription filled. It was kind of strange that no consideration was given to my mobility and so I was sent home with the cane I arrived with.
The next morning I took a cab (I really can not afford to take cabs) back to the ER with ??? and was seen by ???. Terrific, he was one of those rare physicians who listened to me. You can’t imagine how wonderful it feels to be able to talk with a doctor that listens. Dr. ??? ordered some more blood tests (I’m not sure if I have this right, but I think he was looking for some specific bacteria). The test came back negative. Dr. ??? was surprised to see me leaving the hospital and we had a chat before I left. He told me that he would not prescribe any pain treatment, as the pain should be a trigger for me to return to ER. There was no consideration to my mobility, so on my way out I asked about crutches. They told me I would have to pay for them, and in my state I could not imagine not having them to be able to get around my home.
When I got home the drugs were delivered (CEFAZOLIN 3.000mg gs with nacl 0.9% intermittent infusion via cado pump I’ve kept a bag for reference) and the nurse arrived around three o’clock. The nurse was pleasant and very clear that if I needed my IV line changed that I would have to go to ER. Having had five doses of anti biotic, the pain had subsided however, the swelling had not changed. I was growing more and more despondent. I just knew that I would have to go back to ER. I HATE GOING TO HOSPITALS. I had a feeling that this next visit would not be so nice and sure enough, it was awful. I was treated like some idiot and all of my concerns were dismissed.
It was Thursday, I was not very happy, I went back to the place that I did not want to go. I was first seen by a very nice intern. He was attentive and considerate. He told me that he was concerned about my foot not only because it was swollen but also because it was hot. Then in walks Dr. ???. The exact type of doctor that ??????
Dr. ??? in my opinion exposed a new doctor to a dangerous premise, that my immune system was fully reconstituted. That is when my spirit really sank. To have a doctor make such a statement, upon which there is no consensus is boggling. Medical science does not know much about the body’s immune system with the exception of clobbering the whole system with drugs to help combat disease. If science could, then they would be able to trigger the body’s immune system to combat cancers, HIV, and any other chronic disease.
After my ??? test came back with no significant finding the dr told me that he thought IV was a dangerous way to go for risk of infection. He also dismissed my concern, or rather showed no empathy. He insisted that IV drugs were just as hard on my gut as oral ones and to that I challenged him. He just wouldn’t listen, it’s usually at this point that I get the ‘well what do you want me to do?’ and what the hell am I supposed to do with that?
The doctor sent in a nurse to put in another IV. While she was preparing to put it in, she disclosed that she was just brand new on the job, oh boy. The doctor talked about msra’ which I did not know much about and he did explain that amongst the men who sex with men population that there was a significant prevalence of this bacteria.
I had been doing regular blood work for many years, and had never been alerted to nor told that I had such a bacteria.
The nurse transversely punctured through my vein as I watched very closely as she tried to insert the IV needle. I allowed her a second try and she did a worse job than the first. She told me that she would get another nurse (with the excuse that I had bad veins). At that point I had a sense that I was being dismissed as a problem the doctor did not want to deal with, nor was interested in providing me with the best of care. He challenged me that while I for the past 22 years was infected and diagnosed with AIDS, he had treated 100’s of 1000’s of patients and so he was not interested in my personal knowledge or experiences with drugs. Dr. ??? seemed happy that he had achieved his goal in convincing me not to do IV drugs. I agreed when he mentioned septra and then not so happy when he added cepflex. One the positive side he recommended and wrote on the prescription a product called ??? which would help prevent the sort of catastrophic shits I get when taking anti biotic and so though it was a little expensive I also bought it.
So, here I am at home on a loathsome rainy day, diarrhea starting to percolate. I’m not hopeless. Doctors are. Why on earth they think it’s always the best choice to clobber my system with drugs that make me shit and lose weight I’ll never understand. Doctors that completely ignore how important it is to also manage other aspects of my well being. I am feeling feverish and just overwhelmed with madness. Their madness, not my own. I am 6’2”. I now weigh in at 162 pounds. Do you have any idea how terrifying that is for me?
Robert Describes His New Infection Because of Bio-Alcamid - Eindhoven
Not so long ago I noticed that my left foot was...
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