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everopen
Newbie

Reged: 07/09/08
Posts: 4
Feeling Helpless in the Medical Community
      #240565 - 07/09/08 07:13 PM

I submitted this letter in another forum (Ask the Experts / Mental Health and HIV) but it was never addressed. I submitted it to the Treatment-Experienced HIVers last night, but I see that there’s been no reply’s on that forum since late June. So I’m trying this one.
Since my first submission I’d had the time to think about everything that has transpired over the past 5 to 6 years of my HIV treatment. I’ve come to understand my feelings of helplessness as I’ve first, been moved out of one practice to find another, due to lapse of medical coverage (nearly 5 years of treatment at that facility), and now again 5 years later due to my loss of confidence at a much larger facility.
It’s difficult living with HIV. It’s not something that’s easily talked about with family members, if at all. There isn’t always a large community of qualified doctors available in some areas to choose from. So I can now understand where my feelings of helplessness stem from. It began with a blood center telling me “you have to go here…” Later, that doctors office telling me “you can’t be seen here anymore…you’ll have to seek treatment there now…” And now, I’ve had to make my own decision that “I can’t allow myself to be seen there anymore…” But I think that the feelings of uncertainty for what the future held, actually kept me in a facility that I probably should have left some time ago. Again…being HIV positive, how many choices are available, if driving 60 miles to a doctor’s office isn’t feasible? I have a feeling that I’m not the only person that something like this has happened too. I would deeply appreciate you sharing this story, and offering any input or insight into the experiences that I’ve written about below. Thank you!

I'm really having a problem with a situation that I'm having great difficulty letting go of. I currently take three different medications to treat my mental health issues as well as talking with a therapist weekly. All in all, things are going pretty well. I was diagnosed in 1998 when my orthopedic surgeon pulled me aside 5 minutes before going into hip replacement surgery, to tell me that my blood tested positive for HIV antibodies. Needless to say...I was floored.
Like I stated above...things have been going pretty well for the most part, despite facial wasting and several years of sculptra and radiesse treatments.
About a year and a half ago, after dropping 10-15 lbs in only a few months time, I was diagnosed with Type II Diabetes. My HIV doc and PCP, had mentioned nearly every visit that my blood sugar was on the high side, and asked if diabetes ran in my family? But he never ordered any additional testing. So I figured..."nothing to be concerned about". When reviewing my blood glucose levels (fasted) for the previous several years, they were always around 150-200+ even though I trained 4-5 days a week and my diet was in line with my physical training regimen (I'm a certified personal trainer). I had slipped into a bout of depression and had stopped exercising and starting eating like crap. This was when the weight loss happened and I received the diabetes diagnoses. So I confronted my doctor with the obvious question..."Why didn't you have further testing done when I could have caught this and possibly avoided Type II Diabetes"? His only answer was..."I didn't believe that you were fasting when we drew your blood". This was over a 2 year+ time frame of my involvement in a nationwide clinical study, where it was absolutely necessary that I was fasting for each visit. But he didn't believe that I was fasting? Maybe he could have asked me a second time, after I told him yes the first? So now I'm dealing with diabetes that could have possibly been avoided. Needless to say...I switched to another doctor in the clinic since I had lost any confidence in his judgment.
The new doctor was fantastic. She was everything I could have hoped for in a PCP and an HIV physician. I used to tell everybody that "I have the greatest doctor in the world". I really believed that I did.
The time came for me to start back on medication and my choices were pretty limited due to a fairly high level of resistance. I wasn't happy, because of the high potential for lipodystrophy from beginning on PI's.
We discussed my treatment…I was shown a card with all of the existing meds and was told "You'll take 4 in the morning and 3 at night". It was a good thing that I remembered that. Two days later and three new bottles of meds on my kitchen counter; I sorted out all of my meds for the day. The labels said;
(2) Prezista 300mg twice daily.
(1) Epzicom 300mg once daily.
(1) Norvir 100mg once daily.
That figured out to be 4 in the morning and 2 at night. That wasn't what I remembered. So I called the pharmacy at 6:10AM furious that they had screwed up one of my scripts, and demanded that they tell me which one it was and correct it. As it turned out...they hadn't made a mistake. My doctor did. The greatest doctor in the world, who knew the level of resistance that my virus had...had made a mistake on one of my prescriptions. I asked the pharmacy to make a copy of the script, because I was having a hard time believing it, even though the nurse at the clinic had already told me that it was the doctor’s mistake. This was the doctor that I had switched too, after my first at the clinic had failed to alert me to the possibility of developing Type II Diabetes, if I did not maintain my diet and exercise regimen. Or at least could have run a second set of blood test if he didn't believe I was fasting for the first.
It was five years ago when I was forced to leave a smaller practice because my insurance benefits were cut off. When I transferred to this much larger facility it was emotionally difficult at best. About the time of my third visit, I was told that the clinic had lost my records. It wasn’t that the transfer of the records from the previous office didn’t take place. The new clinic had the records (5 years worth), but they lost my entire personal folder…and it was never found.
So I'm leaving the clinic entirely now. I'm switching to a doctor that I've been told is "brilliant" by my therapist.
But I can't seem to let go of the disappointment that I feel about the doctor that I thought was “the greatest in the world”, making such a mistake. I was having difficulty with looking beyond the first doctors "oversight (?)"...and this just completely floored me. If I hadn't caught the mistake...it might not have been noticed until months later when refills were called in. And what would be my resistance levels then?
Like I said...I'm having a lot of difficulty moving past all of this. Doctors aren't supposed to make mistakes like this. Not twice in a row (three if you count the lost personal records)...back to back...with the same patient. Disappointment doesn't even begin to cover the range of feelings that I'm having. I really did like the second doctor that I switched too. I wish that this had never happened. And since this is all centered on my HIV status...I can't even talk about it to the people that I'm around the most...the people I work with. Nine hours a day we joke and kid and help each other to get through difficult times. But I can't talk about mine.


I don't know what I'm hoping to get out of posting this here...or any other HIV/AIDS site (you may see it again someplace else). I only know that keeping it to myself isn't doing anything positive.
I may take others feedback along with this letter, to the director of the hospital that all of this occurred at. I'm not trying to be malicious in any way, or I would be naming the facility and the doctors involved. I've just got this all stuck in my mind, and it's not going away. It's just something else to add to living with HIV and now Type II Diabetes as well. I've never so much as received an apology from either the doctors involved or the facility management. I'm not whining...but this just isn't right.

Thanks for reading this and your feedback...


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Samurai
Fanatic

Reged: 06/25/08
Posts: 68
Loc: Texas, USA
Re: Feeling Helpless in the Medical Community new
      #240602 - 07/10/08 10:09 PM

I wish you the best.

--------------------
I am forever amazed at the abundance of hydrogen and ignorance in the universe.
~Albert Einstein

Edited by Samurai (07/23/08 09:25 AM)

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Samurai
Fanatic

Reged: 06/25/08
Posts: 68
Loc: Texas, USA
One more thing new
      #240607 - 07/10/08 11:10 PM

I understand much of your reactions are perhaps due to having a highly resistive strain of HIV making it more difficult to live with and get treatment. That sucks and I feel for you dude. But still remember the professionals who are treating you are under incredible stress trying to keep you alive. When they lose one of us it tears them up more than most patients realize. Doctors live with that pressure everyday. Their are patients barely alive and they all deal with it in different ways. Try to have faith that they are doing the best they can for you, and don't forget to say "thank you" for their help. It means a lot.

It is not their fault you have a bad strain of HIV. But new medications are being approved constantly and recently research opened totally new doors of how to block the protein transfer of the disease that can led to new treatments and possibly a vaccine.
The amount of research for HIV is huge, so just hang in there and be grateful for everyday you have.
I know it's hard but forgive the past mistakes they made.
You want your file to move up the pipe, not down the pipe of treatment options. Believe me, if you're nice to them, they will stay up at night trying to keep you alive. If you're mean to them, or complain a lot, they have patients who appreciate them who also need their care as much as you do.
God Bless You, and best of luck.
~bob

--------------------
I am forever amazed at the abundance of hydrogen and ignorance in the universe.
~Albert Einstein

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everopen
Newbie

Reged: 07/09/08
Posts: 4
Re: Feeling Helpless in the Medical Community new
      #240614 - 07/11/08 06:20 AM

Quote:

You sound like a difficult patient they are only too happy to get rid of. Imagine how it looks to someone hearing you, or reading you, for the first time. You are radioactive with negative energy in your words.
No doubt this is also effecting your overall health too.
If all that crap happened to me I would say Thank God they did not kill me and now move on to NEXT!



Thanks for the feedback. Actually, I've never complained once. Was even elected the Chair for the clinics CAB. Have always been compliant, and in the end, just asked them to get my records so that I could move on. The typed word never comes across clearly and is very hard to convey the truth sometimes I guess...

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ElGringo
Newbie

Reged: 07/09/08
Posts: 5
Loc: Texas
Re: Feeling Helpless in the Medical Community new
      #240625 - 07/11/08 07:07 PM

personally, i think you have every right to feel the way you do! i live in a rural community, closed hiv dr is 80 miles away & i can't drive there for reasons i brought upon myself; nonetheless, i can understand your frustrations. you speak from your heart to me, just sounds like you'd like something to go right for a change! last few yrs, i've had to go online & research my meds & my lab results because i've lost faith in the local dr that's been writing my Rx's. he & his staff treat me with total indifference, & i've certainly not given them any cause for that. have always been pleasant & easy to deal with; in fact, i feel like i've given them carte blanche to run over me with a bulldozer if they thought they should, so my advice to you, is keep trying to find that one good dr out there that will alleviate your fears & concerns. it's like trying to find a good used car; ya just gotta keep looking no matter how tired or frustrated you get. even with limited choices, i'll make another dr change here in town just so i can feel confident that the prescriptions & advice i'm getting in person coincide with my intuition, common sense & from what i read on the internet! imagine having to go that far. as for Bob & his VA treatment, not everyone is fortunate to get into a zone that fills all his needs. we don't feel sorry for ourselves all the time, but when we do, isn't it nice just to have somebody stand up and say I UNDERSTAND!! and then give that person a great big HUG!!!!!!!!!!!!!!!!!

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Samurai
Fanatic

Reged: 06/25/08
Posts: 68
Loc: Texas, USA
Re: Feeling Helpless in the Medical Community new
      #240626 - 07/11/08 09:19 PM

Perhaps I was too harsh with you. It was just the tone of your post reminded me of difficult patients and I really am in no position to judge you.I agree with another post that rural medical help is often lacking too. Good luck to you man, and I too really understand. hugs ;-)

In respect, I removed my previous post.
I was out of line, really.

--------------------
I am forever amazed at the abundance of hydrogen and ignorance in the universe.
~Albert Einstein

Edited by Samurai (07/23/08 09:27 AM)

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cunta_stalwart
Grand Master

Reged: 06/27/08
Posts: 175
Re: Feeling Helpless in the Medical Community new
      #240627 - 07/12/08 03:39 AM

I feel for you, you have so many things going on, so many things to deal with it is remarkable and a credit to you that you are even able to cope with the half of it, sometimes we put our medical professionals on some kind off super human status and they should be able to deal competently with everything we throw at them - well that simply isn't the case, they are human, they are trained to follow a certain course to deal with certain things, once you step outside that norm then the human shows up, I remember years ago we would go to see a doctor and take everything they said as 100% without question, it would have been improper to question anything they said, nowdays it is common place to question everything they do and even dissagree in some cases, this is because we are all more aware of stuff.

Look forward to where you want to be and don't look back, don't expect too much of these people they are only human, keep your expectations at a level that can be reached easily.

good luck

--------------------
How Many Roads Must A Man Walk Down Before He Admits Hes lost

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Jv40
Member

Reged: 04/17/08
Posts: 14
Loc: Kent, UK
Re: Feeling Helpless in the Medical Community new
      #240647 - 07/14/08 04:48 AM

Hi Everopen

It looks like you've been really let down a few times. I felt even more sorry for you when I read the first response you got back. I've seen it elsewhere recently where somebody came on here feeling devastated about their recent HIV status only to be kicked into touch by this person.

I hope you can let go of your grievances because it doesn't do you any good to be in turmoil. It definitely wasn't right that you were neglected in this way and I'm sure that if those doctors had a second chance to treat you again, they'd do it in a different way. I guess you know this already but nobody tries to get things wrong and wherever we live, our doctors are under huge pressure and financial constraints. I often wonder about how doctors manage to deal with their job and deal with us knowing that sooner or later we will die, and possibly under their care. I have my consultant on a pedastal too and its a dodgy place to put someone because there's only one way to go from the top.

We are in the unfortunate position where we need our specialist doctors as our lives literally depend upon it. You need to find a way to forgive past mistakes because human error isn't malicious or intentional and who knows what was going on in their lives at that time. But mainly just because it is really bad for you to harbour negativity. From this point going forward you can be more forceful when you know you are unwell, and maybe chase people up more than you did in the past. You are right that doctors are not supposed to make these mistakes, but like everything in life you get good doctors and bad doctors too. I'd love to hear that you are feeling better about it all and have found a way to move on. Good luck.

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everopen
Newbie

Reged: 07/09/08
Posts: 4
Re: Feeling Helpless in the Medical Community new
      #240680 - 07/15/08 08:36 PM

I wanted to thank everybody for your comments. I saw my new doctor (and new facility) this morning for the first time. It's different of course, but I know that it'll be ok.
I guess that the point of my original post, was that it feels like these doctors can make mistakes and I (we) have no recourse. I'm in an area where there are plenty of HIV docs to choose from. 25+ at my last facility alone. I'll be honest here...I'm well aware of the paths that HIV can take and accept them. If I follow my doctors instructions and something changes through developed resistance, I understand that it's natural. It's nobodies fault. It's the virus.
But when you've got a red flag waving around warning DIABETES, DIABETES, DIABETES...for 3+ years and take no action or suggest my taking action on my own...that's negligence. HIV is more easily managed than diabetes. This sucks...and I think that it's bullshit that I have no other recourse but to walk away and count my blessings that they didn't kill me. "Suing" would be an option (I may as well throw the word right out there), except that the rest of the doctors in the community would avoid me like the plague, even if legal action WAS justified. So the bastard gets away with it.

Or...is it possible that "the bastards" are getting away with it?

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