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Author Topic: Issues with communicating with doctor?  (Read 935 times)

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Offline luckyone09

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Issues with communicating with doctor?
« on: April 03, 2015, 11:35:39 PM »
I tested positive fall 2013, and immediately went to schedule an appointment with an ID doctor in my insurance network.

The appointment was about a month and a half after receiving my diagnosis at the health department.

The appointment was in December 2013, and I met with the office's nurse practitioner. I never once even spoke with the primary doctor to whom I was referred to by my insurance. She ordered a bunch of lab work to be done (viral load, CBC, Hep B, and the like) and I went that day to have them taken.

That was the last I heard from the doctor's office.

I called a month later, interested in the results, but at the time, they told me that they didn't have the results yet and they were unsure as to why. Curious, I thought, but since nobody had expressed any explicit concern, I didn't think anything of it and went on with my life as normal.

I then moved back to college to finish my last semester before graduation. About a month into the semester, I came down with what I thought was a serious case of strep throat. I went to the medical facility on campus, and the physician told me, after numerous strep and mono tests, that both were negative and that it was just a viral infection that needs to make its course through my system. I told her that I was HIV positive, and about the issue I was having with my ID doctor, and she found that curious. She went ahead and took another CBC panel and prescribed me lidocaine and antibiotics for whatever I had. A week later I came back to discuss the results, she said that everything seemed normal (they weren't able to do CD4 counts at the facility there), and she retested me for mono again. Still negative.

At that time, I called the ID office in my hometown again, still no response from the doctor. Called again the next day, still no word about the test results.

Two months later I still had that horrible sore throat, neck pain, and enlarged lymph nodes, the doctor on campus requested to have the records from that doctor sent to her office so she could go over the notes. It took 3 weeks for those records to be faxed over to the doctor on campus.

I called the ID office one last time before they sent the tests over. Still nothing from their office. I probably spent a total of 15 minutes on the phone with this doctor's office since the original appointment verification in December until getting those results April.

I had a CD4 count of 138 and a viral load of 28,000 in December 2013. Four months have passed since those original tests were done. She told me to schedule an appointment soon, but I was so discouraged with the whole process that I put it off.

I graduated from college and moved back home. In November, I came down with a severe case of thrush, and I was prescribed fluconazole and it went away. I was then sick for a full month, from Thanksgiving until about New Years' Day due to mononucleosis and pertussis (whooping cough), two highly contagious diseases and I have no idea where I could have contracted them from. I have been immunized against pertussis regularly throughout my whole life and had even just recently gotten a DTap vaccine. After fighting off mono and whooping cough, I decided I needed to see another doctor.

March 2015 I see my new doctor. When looking at the test results from 2013, he immediately prescribed me Stribild and Bactrim. Did the same tests, came back with a CD4 count of 25. Not 250. Not 2500. 25.

My doctor told me that because of how far my HIV has progressed that I now have a 50% chance of becoming severely ill or dying within the next 18 months. Because of this, I will have to turn down the offer I received to participate in a highly competitive education program through the Japanese Department of Education, and will be highly likely rejected from future applications because of this disease progression.

My question is to you guys: has this ever happened to you? Have you ever placed your trust in a professional's hands only to come so close to death without even knowing it? I'm still taking my medications religiously, and hopefully when I go back in May, I get hopeful news, but still, I could DIE because of how late I started ART. And it's because the doctor never once called to tell me how serious my condition was even back in 2013.

What should I do?
« Last Edit: April 03, 2015, 11:40:38 PM by luckyone09 »

Offline AT

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  • Take your meds, keep your chin up and enjoy life.
Re: Issues with communicating with doctor?
« Reply #1 on: April 04, 2015, 12:56:22 AM »
Wow, tough place from which to begin and I'm sorry for your path to these forums. We love you here and fully sympathize with your anguish. I've read many narratives from people on these boards who started with CD4 under 100 and are still alive, doing well many years later. Don't close your future to all possible options. But, focus on today and living well. Take your meds. Mind your health with good food, walks outside and lots of rest in between. Minimize stress in your life. Find supportive people. Call your doctor about new symptoms, maybe a new doctor with a better outlook on the promise of HIV medications. Stay close to us and keep your POZ friends up to date on your changes. Here's a big welcoming hug.

Offline BT65

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Re: Issues with communicating with doctor?
« Reply #2 on: April 04, 2015, 11:02:39 AM »
Lucky,
It seems your former dr's office was extremely negligible.  I'm glad you have a new doctor. However, it does not mean you are going to die.  I have friends (besides myself) who have had low Cd4's and are still alive and kicking.

Just cut down on any extra stress, take life one day at a time, and take your meds! We're here, whenever you need to vent.  Also, if you could get in touch with an ASO (Aids service organization) in your area that may be helpful.  Keep going, keep plodding!!

Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline mecch

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Re: Issues with communicating with doctor?
« Reply #3 on: April 04, 2015, 11:20:10 AM »
I tested positive fall 2013, and immediately went to schedule an appointment with an ID doctor in my insurance.
.......
I called the ID office one last time before they sent the tests over. Still nothing from their office. I probably spent a total of 15 minutes on the phone with this doctor's office since the original appointment verification in December until getting those results April.

I had a CD4 count of 138 and a viral load of 28,000 in December 2013. Four months have passed since those original tests were done. She told me to schedule an appointment soon, but I was so discouraged with the whole process that I put it off.

What should I do?

Welcome to the forum.  What country are you in.
Look there have been two big mistakes in your experience.
First of all, obviously your first doctor was poor service. That's on them. However, this may have completely frustrated and discouraged you from getting medical care. Not a good way to live well with HIV.  When you got those results in April 2014, they were extremely SERIOUS and bad.  So that was not the time to bury your head for months and months.  You have to educate yourself enough. And yeah, you have to have a good contact with doctors and some followthrough and followup.  Did you tell those results to the doctor on campus? I can't imagine you did, cause if you did, THAT doctor should have followed you up immediately, and sent you somewhere to quickly see an ID.  Fact is you had an CD4 of 138 and no less than 3 important stake holders dropped the ball, 1st doc, the campus doc, and you.  I am astounded by the lack of follow up and initiative in your experience.

I have occasionally had the experience of frustrating access and followup in medical treatment, only in the US, and not on life-or-death matters.  My suggestion is that you will have to learn to not get discouraged and make sure a serious health issue you have, going forward, is being taken seriously by doctors and being given the appropriate response.

You don't want to ever fall through the cracks again. Its so important to get diagnosis and treatment and prevention on a steady basis, going forward. You will probably have a few issues as your immune system rebuilds. This might take some time.

Please stick around this forum and post whenever you have a questions and health challenges so people can pick up on this and help you along. 

Also, I don't think that new doctor did you any favours with that prognosis on life or death. A bit grim to tell someone, this day and age.  Did he really tell you that? Is something being lost in translation through your confusion? Yikes!  Is this an ID - infectious disease doc?

Can you get a nice friendly GP to filter some of this, and to advocate for you, going forward, with any specialist you might need?
« Last Edit: April 04, 2015, 11:25:12 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline luckyone09

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Re: Issues with communicating with doctor?
« Reply #4 on: April 04, 2015, 02:44:43 PM »
Welcome to the forum.  What country are you in.
Look there have been two big mistakes in your experience.
First of all, obviously your first doctor was poor service. That's on them. However, this may have completely frustrated and discouraged you from getting medical care. Not a good way to live well with HIV.  When you got those results in April 2014, they were extremely SERIOUS and bad.  So that was not the time to bury your head for months and months.  You have to educate yourself enough. And yeah, you have to have a good contact with doctors and some followthrough and followup.  Did you tell those results to the doctor on campus? I can't imagine you did, cause if you did, THAT doctor should have followed you up immediately, and sent you somewhere to quickly see an ID.  Fact is you had an CD4 of 138 and no less than 3 important stake holders dropped the ball, 1st doc, the campus doc, and you.  I am astounded by the lack of follow up and initiative in your experience.

I live in the US. I tried to call the doctor on 5 separate occasions between December and April, and never once got a returned phone call. Even searched the phone records for anything I might have missed. Nothing.

I had no idea what the CD4 count was at that time. The doctor I spoke to was the only one who saw the results and she said that I needed to go see a doctor, and that was it. I took it as, I'm graduating in a month, let me go home and then figure something out. Turns out, that after graduating, I spent a month in Japan, and between working and other things, I had very little time to even process anything for myself. If the doctor on campus had made it seem any more urgent, I would have went to start treatment right then. To be honest, I had no idea how to interpret any of those results, so I didn't even look at them until I went to see my new doctor this year.

Quote
Also, I don't think that new doctor did you any favours with that prognosis on life or death. A bit grim to tell someone, this day and age.  Did he really tell you that? Is something being lost in translation through your confusion? Yikes!  Is this an ID - infectious disease doc?

Most definitely he didn't do my any favors. But at least he's the only one during this whole process of dealing with HIV/AIDS that has brought to my attention just how serious and dangerous my situation is. I cannot say that about any of the previous doctors I've seen. He is an ID doctor. So I appreciate the honesty, because I honestly needed this wakeup call so that I am aware of just how serious this is.

He told me that that was the prognosis if we couldn't get the viral load and CD4 count under control. Yes, he said 50% chance of dying or becoming ill. He told me to go ahead and make the commitment to teach in Japan, but I know that once the officials catch word of this that I'll be rejected anyway.

Quote
Can you get a nice friendly GP to filter some of this, and to advocate for you, going forward, with any specialist you might need?

I'm actually going to stick with my current ID doc for the time being, and monitor my status over the next few months. I see him again in May. The only thing is I'm leaving for a week to go visit a grad school in California that I was accepted into. I don't think it's too much of an issue as long as I take things easy and keep an eye on my health while I'm away. Any suggestions?
« Last Edit: April 04, 2015, 02:50:58 PM by luckyone09 »

Offline buginme2

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Re: Issues with communicating with doctor?
« Reply #5 on: April 04, 2015, 03:32:06 PM »
Any suggestions?


Yes - you now have a life threatening disease.   Just like everyone else who's gone through this before you, you will realize that you have to take a more aggressive and proactive role in your healthcare.  Don't leave it up to your doctors or their untrained minimum wage making staff to assure your cared for.  You have to learn to be your own advocate and you have to learn the system. 


I've never had to call for my labs because I chose a healthcare system that has online access so I can see my labs the day they post online.  I know what every lab result means and when they are out of range I follow up.  I don't wait for people to call me or assume the doctor is up on it.

This isn't a dig but from here on out, no excuses.  It's your responsibility. 
Don't be fancy, just get dancey

Offline zach

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Re: Issues with communicating with doctor?
« Reply #6 on: April 04, 2015, 04:01:05 PM »
^ that, all day long... i started to post a couple times saying the same sort of thing, but mine sounded too much like a dig

you're not going to die, put that thought away... personally i think it was improper to tell you that. get sick? maybe/probably.

i've had single digit cd4 counts, twice. many others here have as well.

it's time to get in the game... it's your ball, you have to run with it

you want paper copies of your lab work. mine are emailed, to me and the doctor. i figure i probably look at my results before he does.

now, gonna give it a little hard. you have AIDS. you had AIDS from your first labs.

most of this thread has been spent talking about your former doctor. waste of time and breath. let it go. you share some of the blame.

where you are now, and how you move forward is the only thing that is important.

get on meds, and take your meds daily. take your health seriously.
An honest tune with a lingering lead has taken me this far

Offline mecch

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  • red pill? or blue pill?
Re: Issues with communicating with doctor?
« Reply #7 on: April 04, 2015, 04:03:52 PM »
I get the point of what happened up to April. But then you didn't follow up for months. Maybe a year and you had thrush, and still no follow up about being HIV+ and with CD4 below 200.  And that on-campus doctor knew all that, and didn't clue you in these were critical? Then you had serious diseases in the fall and you saw yet another doctor, it occurs to me now, because you imply that you were diagnosed. And so this 3rd doctor who diagnosed mono and whooping cough, didn't ask where you were with an HIV doc, why you weren't being treated by specialist?  I can't fathom what went on in this story.

Well, water under the bridge.

Do you get the message I and Bug are sending you? You are a bit too ignorant on the basic facts of HIV. This has good and bad sides. Bad side is, you didn't advocate for yourself last year. OK going forward you will.  ;D

Good side is, you don't know enough yet to understand that you don't have to knock down your future plans.  You sound a bit pessimistic on your grad school and career future..  You might have to adjust a tiny bit, and then go forward with determination and strategy.

Have you read the lessons about HIV on this site?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

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Re: Issues with communicating with doctor?
« Reply #8 on: April 04, 2015, 04:29:10 PM »
Ah ok Zach posted at same time. So message has been communicated.

What sort of grad school do you want to do?  Did you start the HIV treatment. How is that going? How do you feel? 

Are you working?  Maybe think about taking it easy for the first few months - sticking to one location until you have 2 sets of labs.  Did the new doc give you a schedule for when you will have them?  I had labs a lot my first year after infection, and then soon on treatment. Must have been 2 month after starting treatment, then 2 months after that. Then 4 months. Then 6 months. 

“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline luckyone09

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Re: Issues with communicating with doctor?
« Reply #9 on: April 04, 2015, 05:34:33 PM »
Looking at the doctors' from college (I went to see 3 different ones at that time) notes online from the appointment in April (which I just found out were posted on an online portal), apparently she wrote down "ASAP." She never expressed that in person to me, so I assumed that I was just living with HIV and I had more time to go through with what I had planned. I didn't know I had AIDS; otherwise I would have immediately went to another doctor. Yes, the whole process discouraged me from seeking further help at that time. But I would NOT have delayed getting help if I was made aware of just how serious things were.

I am 23, turning 24 in the next few weeks. I have never had an issue with a healthcare professional following up with the status of any condition until recently. If I had anyone discuss with me the seriousness of my condition, I would have taken a more proactive approach, like I am now. Until now, it's always been "Oh, you're HIV+ - you'll be ok, we'll wait to start you on treatment until your T-cells are at a low enough level, people hardly die from this nowadays," and now, "You could potentially die in 18 months without treatment." Little did I know that since diagnosis I needed to start treatment right away.

I'm not sure why putting my faith in medical professionals and their advice translates into me being negligent of my own health. I trust the people who are there to make me better, but apparently I've been putting more faith in them than I should have. But I can't go back and change what's been done, only hope to get better.

As far as the other doctors that I saw at the end of 2014, I couldn't tell you why they didn't question me about my status. I'm going to request copies of all medical records from any doctor I've seen in the last 2 years just to have at my own disposal.

I don't think I'm going to die. I think it's more of the initial shock of hearing how bad it's gotten that's gotten me to re-evaluate my choices.

You're right though. No more being passive. Everything I've read or have been told about HIV is that it's really nothing to worry about, to trust in the doctors, take their advice, and wait it out. But I see now where that's gotten me. Only I can be my own advocate from here on out.

Ah ok Zach posted at same time. So message has been communicated.

What sort of grad school do you want to do?  Did you start the HIV treatment. How is that going? How do you feel? 

Are you working?  Maybe think about taking it easy for the first few months - sticking to one location until you have 2 sets of labs.  Did the new doc give you a schedule for when you will have them?  I had labs a lot my first year after infection, and then soon on treatment. Must have been 2 month after starting treatment, then 2 months after that. Then 4 months. Then 6 months. 

It's a translation program. I need to make the non-refundable tuition deposit by next week in order to confirm my spot. So I'm going to ask about deferred admission just in case these next sets of tests aren't favorable.

I've been on the medication for a little less than a month now. The meds made me feel like shit for the first week or so with nausea, diarrhea, body aches, headaches, so I started taking them at night before I went to bed. Now I'm just dealing with a bit of insomnia, but it beats feeling like I'm gonna puke all day. 

I'm working part-time in retail (probably not a good idea, but I love what I do). The next set of labs I'll get done the beginning of May, and then immediately go see the doctor for a followup. I'm sure he'll want me to followup with another appointment in July. And then hopefully start school in August and find an in-network provider near the college that I can have future followups with.

Offline mecch

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Re: Issues with communicating with doctor?
« Reply #10 on: April 04, 2015, 07:49:49 PM »

I am 23, turning 24 in the next few weeks. I have never had an issue with a healthcare professional following up with the status of any condition until recently. If I had anyone discuss with me the seriousness of my condition, I would have taken a more proactive approach, like I am now.

1) Until now, it's always been "Oh, you're HIV+ - you'll be ok, we'll wait to start you on treatment until your T-cells are at a low enough level, people hardly die from this nowadays," and now, "You could potentially die in 18 months without treatment." Little did I know that since diagnosis I needed to start treatment right away.

2) I'm not sure why putting my faith in medical professionals and their advice translates into me being negligent of my own health. I trust the people who are there to make me better, but apparently I've been putting more faith in them than I should have. But I can't go back and change what's been done, only hope to get better.

3) As far as the other doctors that I saw at the end of 2014, I couldn't tell you why they didn't question me about my status. I'm going to request copies of all medical records from any doctor I've seen in the last 2 years just to have at my own disposal.

I don't think I'm going to die. I think it's more of the initial shock of hearing how bad it's gotten that's gotten me to re-evaluate my choices.

You're right though. No more being passive. 4) Everything I've read or have been told about HIV is that it's really nothing to worry about, to trust in the doctors, take their advice, and wait it out. But I see now where that's gotten me. Only I can be my own advocate from here on out.

It's a translation program. I need to make the non-refundable tuition deposit by next week in order to confirm my spot. So I'm going to ask about deferred admission just in case these next sets of tests aren't favorable.

I've been on the medication for a little less than a month now. The meds made me feel like shit for the first week or so with nausea, diarrhea, body aches, headaches, so I started taking them at night before I went to bed. Now I'm just dealing with a bit of insomnia, but it beats feeling like I'm gonna puke all day. 

I'm working part-time in retail (probably not a good idea, but I love what I do). The next set of labs I'll get done the beginning of May, and then immediately go see the doctor for a followup. I'm sure he'll want me to followup with another appointment in July. And then hopefully start school in August and find an in-network provider near the college that I can have future followups with.

It takes awhile to adjust to meds, for some people.

Listen I agree with Zach what counts is going forward.  Im responding on 2014 because maybe you can look inside, and evaluate what happened, instead of being defensive. You seem to be digging in your heels that you were blithely ignorant.  I dunno.  Have you read the lessons on this site? Did you diagnosing doctor tell you to learn a little bit? 

1) above.  NO doctor I know of is going to say that a person with CD4 below 200, which you had, should wait for the time for treatment.  I am having a hard time understanding that 3 doctors didn't react.  Is it possible you weren't listening closely?

2) above. Going forward, you have to know enough about HIV, but not too too much (in my opinion). You have to know enough about health.  You dropped that ball. University graduate and looking to grad school, you aren't dumb.  So take some ownership. Is is possible you were in denial and not wanting to deal?

3) If I am reading between the lines, the question is - Did you tell your docs in November 2014 you are HIV+, when you had mono and whooping cough?  Hmm.  Hello?  If not, then think about that.  All doctors must know.

4) HIV is something to worry about if its not being monitored and treated when necessary.  It was necessary when you got your first numbers. Necessary when you got thrush. Necessary when you were sick in bed for 6 weeks early this winter.  Where did you get the idea your infection was no problem, seeing as it was both untreated and completely un-monitored? 

Well back to regularly scheduled program. I don't see the point of investigating the paper trail with these former docs.  Just take care of things going forward, and reread Zachs "snap out of it" post.  ;D  I'm sure you're going to open your ears next time you see your doc.
« Last Edit: April 04, 2015, 07:55:45 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline luckyone09

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Re: Issues with communicating with doctor?
« Reply #11 on: April 04, 2015, 08:45:38 PM »
One way or another. I tried being proactive in getting my original ID to relay to me the results of the original blood work. There is no excuse for waiting 4 months and denying that they had the results in hand when I tried to call them. To be honest, I was completely blindsided by the results, had no idea what the condition of my health was, and nobody, not one, told me to seek help immediately. Here's the thing: you're all probably talking to me with years and years of perspective and undergoing extensive treatment for your conditions. Me? I'm still young, naive, and was praying to whoever's up there for a miracle that no news from my doctor was good news.

I am currently pursuing a malpractice suit against my original ID, but for now I'm gonna focus mostly on recovery. I was hoping to get a little more insight into what issues other people may have faced in communicating with their ID, and maybe get a little more support, but even if me being a blissful, ignorant youth may have potentially caused myself to become sicker, I'm still under the impression that if I had started treatment a year ago, I wouldn't be in this predicament. So yes, I blame my original doctor. So if that means you don't feel like discussing the matter with me, that's fine. I'm defensive because I didn't understand the status of my health at the time and until now, nobody had expressed any explicit concern for my health.

"I dropped the ball" in becoming discouraged in following up with a system that let my body basically destroy itself, sure. Yes, I'm defensive because I ws young and stupid and not as proactive in my health as I should have been, and it doesn't help when people are pointing a finger at me, when I'm still trying to come to terms to this all myself.

Say what you want, and no matter my contributory factor in the worsening of my health, that doctor never once returned a single phone call after having repeatedly contacted his office and there is no reason why it should take 4 months for these horrible test results to be released to me. That is gross negligence and he should be held responsible.

Yes, I know it won't change my condition any, but anger is one of the first steps in grief isn't it?

Thank you for your support and all, and I'll be sure to "open my ears" more than I have been doing for my other doctors from here on out.

Offline mecch

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Re: Issues with communicating with doctor?
« Reply #12 on: April 04, 2015, 10:48:28 PM »
malpractice?!

I don't want to be part of you entering this forum with too much negative energy and sorry if I've opened up cans of worms.

Did you tell the doctor(s) who diagnosed your mono and whooping cough that you are HIV+? 

I am scratching my head. Im trying to respond to your thread title, and you asking what to do about improving communication. You went through a few doctors with no communication.

Now you reveal a malpractice suit against the diagnosing doctor.

I wish you all the best with your first months of treatment and my opinion is you may be going down the wrong path here, thinking litigation is going to answer to the now and the future.

From what I read, you had a big hand in not being treated for a year.  And now I am reading that you are not really owning that and moving forward. I dunno.

Don't know you. I hope you get the result you desire.  Your health will be rebuilt with a good relationship with doctors going forward.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline zach

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Re: Issues with communicating with doctor?
« Reply #13 on: April 04, 2015, 10:55:02 PM »
I have a son your age, also in college. Please believe me when I say I am supportive of you. Some truths are hard to hear. Sometimes I say hard things to him, recently though he has had some hard truths for me. Never easy to be on either side of that.

You've been through the denial stage. That anger you feel now... look in the mirror. Get angry at yourself. Then forgive yourself. Remember that the last step, is acceptance.

I won't give it to you any harder than I have.
An honest tune with a lingering lead has taken me this far

Offline luckyone09

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Re: Issues with communicating with doctor?
« Reply #14 on: April 04, 2015, 11:22:33 PM »
Ok, sure, I had a hand in not researching more into the test results, assuming that since they didn't do more than recommend me see another specialist, that all was fine. I had a hand in becoming frustrated with the health system for letting me become "lost to follow up" when I consistently tried to follow up with my original doctor. Now I know that there's no excuse in not being demanding and advocating for my own health. Lesson learned.

But if your doctor sat around while he knew that you had AIDS and a) never got in contact with you and b) denied having the test results in hand, OR c) didn't even look at the test results until 4 months after having them delivered, how would you feel? Wouldn't you be angry?

Yes, I'm upset with myself for not seeking help earlier, and denial is a real thing. I was in denial that there was anything too out of the ordinary with my test results because nobody explicitly said to my face "You have AIDS, you need treatment now." With this kind of diagnosis, wouldn't you agree that there's no use in beating around the bush? "You should start to see another doctor" does not equal "You have AIDS, get help now."

I was in denial up until I got sick with mono and whooping cough. And soon after recovering from that, I was prescribed HAART, and told that my T-cells were so low.

No, litigation won't cure my condition, but can you honestly deny the fact that this doctor made a mistake and caused me harm because of it?

I was diagnosed HIV+ by a free HIV test, and within a year, I developed AIDS. I took it upon myself to seek the help of my original doctor. The literature I've read said it could take years for it to progress to that stage, which means I was sick longer than I thought I was. I don't think that I was wrong in believing that I had a least a few more healthy years before getting to this point.

I have a son your age, also in college. Please believe me when I say I am supportive of you. Some truths are hard to hear. Sometimes I say hard things to him, recently though he has had some hard truths for me. Never easy to be on either side of that.

You've been through the denial stage. That anger you feel now... look in the mirror. Get angry at yourself. Then forgive yourself. Remember that the last step, is acceptance.

I won't give it to you any harder than I have.


Thank you zach, I appreciate it. I haven't personally reviewed those tests until just recently and realized, through my own research, just how bad they were. And now to hear from my current doctor of just how bad it's gotten since then, I needed that wakeup call. It's just not fair, so forgive me for being defensive and for having "played a big hand" in my current prognosis. I've accepted the fact that my naive faith in miracles might have prevented me from seeking help, and that it could have been prevented by getting treatment sooner.

But the thing is: I didn't know I needed treatment until now.
« Last Edit: April 04, 2015, 11:27:04 PM by luckyone09 »

Offline zach

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Re: Issues with communicating with doctor?
« Reply #15 on: April 04, 2015, 11:35:26 PM »
(((((lucky))))))

hike your own hike. but i think you're going down the wrong path. don't look back, none of it matters, none of it would have changed anything. you are here now, where you go is the only thing that matters.

edited to add... you didn't develop AIDS within a year of DX. you were diagnosed with AIDS. less than 200 cd4 is AIDS. and once you've dipped below that threshold, officially you always have AIDS. it's semantics though, you are treatable, you will learn to live with it.

just for perspective, you were DXd with a cd4 of 138, that is higher than my current count. we're all in this together lucky.
« Last Edit: April 04, 2015, 11:40:37 PM by zach »
An honest tune with a lingering lead has taken me this far

Offline luckyone09

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Re: Issues with communicating with doctor?
« Reply #16 on: April 04, 2015, 11:53:09 PM »
I was never given the diagnosis of AIDS until my CD4 got down to 25, and that was last month. Until then, all I was told was that I sas positive. Once again, semantics.

But you're right: I'm fortunate that I'm still alive and have the opportunity to take medication that wasn't available 40 years ago. I'm fortunate that I didn't die from mono and whooping cough and thrush and that my body was able to fight off those infections. I'm thankful for my current doctor, however blunt he may be, for putting me on the right path, but I'm extremely disappointed in the quality of care I've received up until now.

And I agree, no use in living in the past, I will focus on the here and now.

 


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