Mangled - 7 Angels and Devils
I've found that a lot of choosing a doctor has to do with personal chemisty as well as their skills. Some doctors are very personable and others have the personality of a crash test dummy. Does this potential maintainer of your health seem to give a rat's ass about your well being? Does he/she seems like they'd be willing to go to bat for you?
I met my primary care provider almost 20 years ago. He was a young enthusiastic medical director of a Boston clinic, who was very well versed in the treatment of HIV. Heck when I first began seeing him, he even called me at home from time to time to see how I was doing. If I had a 30 minute appointment scheduled, he spent 30 minutes or more with me. We worked together on a holistic approach to HIV care......then the HMO's/insurance companies began calling the shots more, seriously limiting my doctor's ability to be creative and to spend more time with me. He's still a very nice guy and quite knowledgeable, but during the past 5-7 years my appointments feel more like a contestant on Beat the Clock. My doctor like many others is spread thinner and thinner but an increasingly taxed health care system.
Specialists tend to be even more remote, the high priests and priestesses of medicine, especially surgeons. Sometimes it can take up to a year to get an appointment with the right specialist, and by that time you could be dead.
Three years ago I had rectal surgery to remove 2 large pre cancerous growths. I saw a young female surgeon who was a total angel. She exuded caring and took the time to explain my condition and what would be involved in the surgical procedure. She talked to me as an equal and not down to me as doctor to mere mortal.
After surgery she called to check in on me twice and we chatted, me telling her I never had to use the narcotic pain killers that were prescribed. She also removed 2 hemorrhoids, which tends to be a very painful procedure, but in my case, the pain was no worse than when I had a hemorrhoid flareup. I still have fond memories of her care and kindness. I wish there were a million more doctors like her. This brings me to an oservation, in my own experience female doctors seem to have a lot more compassion and take the time to be more thorough. Some of the nurse practitioners I've met are more knowledgeable than their superiors.
As far as my back goes, I've been bounced from one neurology specialist and surgeon to another since the early 90's, the hot potato that no one wanted to perform surgery on, plus insurance said surgery was not necessary....yeah until the damage is long done and irreversible.
The neurosurgeon who finally agreed to operate is a young doctor with excellent credentials, and up until the last minute he tried talking me out of having the surgery. After we went over my having exhausted all of the alternative treatments to no avail, I told him it was time to do the deed. He shook my hand and said I was making the right decision, but would not guarantee any positive results. He also took the time to go over and explain my MRI and EMG tests in detail, navagating my messed up spine on the screen.
I never did see him after the pre-surgical consultation where I signed the final release forms. A couple of his underlings visited me in my hospital room to see how I was doing (about a 60 second visit). The wizard had worked his sorcery and was nowhere to be seen, returning to his castle in the clouds.
"I just wish the surgeon would explain what he did. Where is he?"
"You dare approach the great an powerful Oz!"
"Yes kind sir, that would be much appreciated."
"Bring me the broom of the wicked witch of the West and I shall grant your wish....now begone."
Yesterday I had the staples pulled out (all 30 of them). The attending nurse who removed the staples was very nice and gave me a small shot of a local anesthetic. I felt a series of small pin pricks, feeling much better after the staples were gone....until last night when the local had fully worn off. Today I just feel very sore all over, as If I had slept under the wheels of a large truck, but at least it doesn't feel like razor wire when I lean my back against a chair.
It's too early to tell how much, if any improvement I will have, but the nerve pain in my legs is just as bad as it was before. A lot of the numbness and tingling that I experienced in my mid/lower back for years seems to be almost gone, perhaps masked by the post operative soreness. Some of what I'm feeling is due to inflamation from the surgery itself and it will be weeks to months before they can get a baseline on any improvement I get.
The bottom line to finding a doctor or specialist, and this goes double for chronic conditions like HIV, where you'll meet with the person possibly for the rest of your life.
Are they easy to talk with and do they explain medical conditions in terms mortals can understand. I do a lot of my own homework (mostly via the web) so can converse intelligently with doctors. Some doctors are annoyed by knowledgeable patients but most I've met with find it refreshing.
Are they willing to go the extra mile, dig deeper, exploring all alternatives before more radical treatments are needed?
It would be nice to find a doctor who's also a friend, but those are few and very far in between, so I settle on someone who I see only at the appointed times, getting as many questions answered in 15-30 minutes as I can.
My doctor is also open to my exploring holistic paths and was instrumental in getting me into a Chinese herbal medicine and acupunture study when I could not tolerate AZT. Chinese medicine carried me along for almost 12 years and helped lessen toxic side effects from the cocktail during the 7 years I was doing nukes. He had not heard of K-Pax and when I brought in one of the bottles, he said that there has been a lot of study done on mega dosing HIV patients with these very vitamins and minerals. He feels it seems to be helping with no toxicities, so keep doing what I'm doing.
During one visit my doctor said, "we've been seeing each other for quite a while", me replying, "yeah about 18 years, seems like forever. You've kept be going all this time and I see no reason to change horses this late in the game."
I've followed him from one climic to the next and back to the one he started at. He knows my medical history and bits about me personally. When you find one you feel comfortable with you stick with them.
Another important factor for those of us living with conditions like HIV is getting networked with others who share our condition. I would not have have heard about K-Pax if it were not for an online Poz chat buddy sharing his eperiences with it.
I met my primary care provider almost 20 years ago. He was a young enthusiastic medical director of a Boston clinic, who was very well versed in the treatment of HIV. Heck when I first began seeing him, he even called me at home from time to time to see how I was doing. If I had a 30 minute appointment scheduled, he spent 30 minutes or more with me. We worked together on a holistic approach to HIV care......then the HMO's/insurance companies began calling the shots more, seriously limiting my doctor's ability to be creative and to spend more time with me. He's still a very nice guy and quite knowledgeable, but during the past 5-7 years my appointments feel more like a contestant on Beat the Clock. My doctor like many others is spread thinner and thinner but an increasingly taxed health care system.
Specialists tend to be even more remote, the high priests and priestesses of medicine, especially surgeons. Sometimes it can take up to a year to get an appointment with the right specialist, and by that time you could be dead.
Three years ago I had rectal surgery to remove 2 large pre cancerous growths. I saw a young female surgeon who was a total angel. She exuded caring and took the time to explain my condition and what would be involved in the surgical procedure. She talked to me as an equal and not down to me as doctor to mere mortal.
After surgery she called to check in on me twice and we chatted, me telling her I never had to use the narcotic pain killers that were prescribed. She also removed 2 hemorrhoids, which tends to be a very painful procedure, but in my case, the pain was no worse than when I had a hemorrhoid flareup. I still have fond memories of her care and kindness. I wish there were a million more doctors like her. This brings me to an oservation, in my own experience female doctors seem to have a lot more compassion and take the time to be more thorough. Some of the nurse practitioners I've met are more knowledgeable than their superiors.
As far as my back goes, I've been bounced from one neurology specialist and surgeon to another since the early 90's, the hot potato that no one wanted to perform surgery on, plus insurance said surgery was not necessary....yeah until the damage is long done and irreversible.
The neurosurgeon who finally agreed to operate is a young doctor with excellent credentials, and up until the last minute he tried talking me out of having the surgery. After we went over my having exhausted all of the alternative treatments to no avail, I told him it was time to do the deed. He shook my hand and said I was making the right decision, but would not guarantee any positive results. He also took the time to go over and explain my MRI and EMG tests in detail, navagating my messed up spine on the screen.
I never did see him after the pre-surgical consultation where I signed the final release forms. A couple of his underlings visited me in my hospital room to see how I was doing (about a 60 second visit). The wizard had worked his sorcery and was nowhere to be seen, returning to his castle in the clouds.
"I just wish the surgeon would explain what he did. Where is he?"
"You dare approach the great an powerful Oz!"
"Yes kind sir, that would be much appreciated."
"Bring me the broom of the wicked witch of the West and I shall grant your wish....now begone."
Yesterday I had the staples pulled out (all 30 of them). The attending nurse who removed the staples was very nice and gave me a small shot of a local anesthetic. I felt a series of small pin pricks, feeling much better after the staples were gone....until last night when the local had fully worn off. Today I just feel very sore all over, as If I had slept under the wheels of a large truck, but at least it doesn't feel like razor wire when I lean my back against a chair.
It's too early to tell how much, if any improvement I will have, but the nerve pain in my legs is just as bad as it was before. A lot of the numbness and tingling that I experienced in my mid/lower back for years seems to be almost gone, perhaps masked by the post operative soreness. Some of what I'm feeling is due to inflamation from the surgery itself and it will be weeks to months before they can get a baseline on any improvement I get.
The bottom line to finding a doctor or specialist, and this goes double for chronic conditions like HIV, where you'll meet with the person possibly for the rest of your life.
Are they easy to talk with and do they explain medical conditions in terms mortals can understand. I do a lot of my own homework (mostly via the web) so can converse intelligently with doctors. Some doctors are annoyed by knowledgeable patients but most I've met with find it refreshing.
Are they willing to go the extra mile, dig deeper, exploring all alternatives before more radical treatments are needed?
It would be nice to find a doctor who's also a friend, but those are few and very far in between, so I settle on someone who I see only at the appointed times, getting as many questions answered in 15-30 minutes as I can.
My doctor is also open to my exploring holistic paths and was instrumental in getting me into a Chinese herbal medicine and acupunture study when I could not tolerate AZT. Chinese medicine carried me along for almost 12 years and helped lessen toxic side effects from the cocktail during the 7 years I was doing nukes. He had not heard of K-Pax and when I brought in one of the bottles, he said that there has been a lot of study done on mega dosing HIV patients with these very vitamins and minerals. He feels it seems to be helping with no toxicities, so keep doing what I'm doing.
During one visit my doctor said, "we've been seeing each other for quite a while", me replying, "yeah about 18 years, seems like forever. You've kept be going all this time and I see no reason to change horses this late in the game."
I've followed him from one climic to the next and back to the one he started at. He knows my medical history and bits about me personally. When you find one you feel comfortable with you stick with them.
Another important factor for those of us living with conditions like HIV is getting networked with others who share our condition. I would not have have heard about K-Pax if it were not for an online Poz chat buddy sharing his eperiences with it.
posted by The Dreamer @ 12:11 PM
1 Comments:
At 1:39 AM,
Verne said…
I'm so sorry you're suffering, just wanted to give you a big hug and hope you find the answers soon
xxx
Undiagnosed Illness
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