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Author Topic: Scary message from doc  (Read 2498 times)

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Offline Fondoo

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  • Posts: 72
Scary message from doc
« on: October 05, 2010, 10:28:01 PM »
  I need a little vent. Today I get this message from my doc that he has received my last labs and there have been significant changes we need to address as soon as possible. So I call back but apparently he has taken off early today and is unavailable for further comment. ARG! I don't know If my liver is dying or what but it sucks this guy scares the crap out of me and is now unavailable for comment.  Tracy is powerless over Hawaii health care.
   oh well life is a sexually transmitted terminal condition even under the best of circumstances
Namaste
« Last Edit: October 05, 2010, 10:30:16 PM by Fondoo »

Offline GSOgymrat

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  • HIV+ since 1993. INTJ
Re: Scary message from doc
« Reply #1 on: October 05, 2010, 10:54:04 PM »
A message like that would drive me bonkers. How frustrating! I hope that the news isn't serious.

Offline next2u

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Re: Scary message from doc
« Reply #2 on: October 05, 2010, 11:11:52 PM »
that would irk the heck out of me too. you'll find out soon enough. take care until then
midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3
jan14 cd4 813; vl ud; cd4% 42.8
may14 cd4 783; vl *; cd4%43.5

Offline tednlou2

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Re: Scary message from doc
« Reply #3 on: October 06, 2010, 01:42:42 AM »
His staff couldn't fill you in on what he wanted to talk to you about?  He could have left his cell/home number if he was taking off work early.  Or, there should be a way to page our docs.  I hate that about so many docs.  It seems many feel they will only speak to you during an appointment.  They are not to be bothered any other time.  My partner is a teacher and gets phone calls at night and email messages from parents.  I know we all want our personal time away from work, but I wish more docs would make themselves available to their patients.  I realize that could get out of hand with patients calling all hours.  They should at least give an email address.  I read emails all day long on my phone and decide which are urgent and need responses right away.

Offline BT65

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Re: Scary message from doc
« Reply #4 on: October 06, 2010, 07:25:21 AM »
They should at least give an email address. 

I used to e-mail my doctor, until recently.  He said the connection was not secure, and it violates HIPAA.  It was really disappointing, because it was such an easy way to reach him with questions that wouldn't warrant an appointment.  And I can't stand calling, leaving a message with the receptionist, who passes it to the nurse, who passes it to the doctor, and maybe getting a response 3 or 4 days later.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline PeteNYNJ

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  • When life gives you AIDS...make LemonAIDS!
    • Dance for Me, Puppets
Re: Scary message from doc
« Reply #5 on: October 06, 2010, 12:43:54 PM »
Couldn't you sign something giving up your HIPAA rights to talk to him over the internet? 

I love when doctor's speak about HIPAA laws.  I want to be like "have you ever been to a hospital", they are constantly violated.

Back to the OP,  that would drive me crazy too.  When is he next available to speak to you?

Offline Fondoo

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  • Posts: 72
Re: Scary message from doc
« Reply #6 on: October 06, 2010, 02:34:05 PM »
  His clinic opens up in an hour so hopfully I will find out whats what soon.I
    What a day I had yesterday between the docs mystery bad news and crap in court I'm surprised I got any sleep at all.
    I am also dealing with a crazy x-wife that does not want me to see my kid. I have spent 3 years and 20k fighting this lady.Oh well acceptance is the key and she is forcing me to grow spiritually wether I want too or not. I just wish the courts did a better Job protecting a fathers rights

Offline HowYouDoin

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  • this is not me but i wish, lol
Re: Scary message from doc
« Reply #7 on: October 06, 2010, 03:58:59 PM »
Oh Fondoo

  I wish you the best today and hope everything is ok and your doctor gives u optimistic news.  Keep us posted.

Al

Offline emeraldize

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Re: Scary message from doc
« Reply #8 on: October 06, 2010, 09:56:05 PM »
What's the word from the doctor?

Offline Fondoo

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  • Posts: 72
Re: Scary message from doc
« Reply #9 on: October 06, 2010, 10:54:53 PM »
Good news my liver is ok bad news I have 3 t-cells and a 150k viral load. Oh well I get what I deserve I have been feeling pretty self destructive since starting chemo again six months ago (truvada/viramune) and have missed many doses. I went and got labs again today for another genotype I hope the next regiment is as tolerable as this one was. This time around I will do everything in my power not to miss a dose.
    I stopped taking the prophylactics a few months ago and was honest about that when asked by my doc the result was he fired me as a patient. I don't blame him he happens to live next door to my X and he believes there is a conflict there.I am good with that since he is of the opinion that people with AIDS that don't take all there pills should not be allowed to see there kids. He believes that I can make my child sick with a fungus or something. I really don't buy that so that relationship is better terminated.Last thing I need is him calling CPS if I experience another treatment failure.
    Fortunately I look and feel great and will begin all the prophylactics again. I now have 12 days sober I have been smoking a lot of grass the last 6 months and have realized I needed to get back into my 12 step groups to combat the loneliness and self destructive behavior.
  Thank you all for being here. I am so impressed by the love and support shown on this site

Namaste

Offline HowYouDoin

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  • this is not me but i wish, lol
Re: Scary message from doc
« Reply #10 on: October 06, 2010, 11:26:06 PM »
hi Fondoo

Please stay calm and do what the doctor tells you to and do not miss any more doses of your meds once you start it again. Take this seriously because if you don't you will be regretting it when you are in the hospita. If I had kids I would take care of myself for them if not for myself. Stop feeling sorry for yourself and understand that this is a treatable disease and YOU WILL get better IF you make the decision to start living a healthier life BUT you have to start NOW. WAKE UP!!!!!!!!!

Al

Offline Fondoo

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  • Posts: 72
Re: Scary message from doc
« Reply #11 on: October 06, 2010, 11:47:32 PM »
lol ok I'm awake   :D

Offline Hellraiser

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Re: Scary message from doc
« Reply #12 on: October 07, 2010, 01:21:49 AM »
Tracy you know there aren't infinite numbers of combos out there.  Isn't this the second or third time you've gone off your meds?  Each time you do you increase your chance of creating resistance, or getting an OI while your system is compromised, or you name it.  It really frightens me to think anyone can be so cavalier about the meds that keep them alive.  I know you personally have said you never EVER want to get PCP again.  You do realize this is putting you right back onto that path right?  Not taking the prophylactics I can't give you flack over, but with a CD4 of 3 I would be taking every pill in sight if I felt it would keep me safe.

Offline PeteNYNJ

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  • When life gives you AIDS...make LemonAIDS!
    • Dance for Me, Puppets
Re: Scary message from doc
« Reply #13 on: October 07, 2010, 10:05:17 AM »
Fondoo

Take the drugs...you speak about your children a lot, don't you want to be around to watch them grow up?  If it is loneliness and self destruction that has led you down the path of "giving up" than get your butt to a therapist or a group to find out what you can do about it so it doesn't negatively effect your health.

I would get back on the prophylactics so you keep any nasty bugs away and build up that immune system.  You know the drill.  If there is something inside that is keeping you from doing just that, please talk about it here.  That is why we are all here, to support each other.

Good Luck

pete

Offline eric48

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Re: Scary message from doc
« Reply #14 on: October 07, 2010, 05:43:48 PM »
Please kindly let me side with Pete

(despite the fact I do not know all your details and so on...), The best thing you can do for your kids is be with them, take care of their health, show them how to do the right thing, etc.

and the right thing, right now, is being serious about your meds

Good Luck Eric

Offline Fondoo

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  • Posts: 72
Re: Scary message from doc
« Reply #15 on: October 08, 2010, 01:47:13 AM »
thanks guys I can assure you all I will do everything in my power to get the most milage out of this body I can.I am back in a 12 step group doing 2 hours of yoga a day doing my Buddhist practice ect. I am a man on a mission.I got a new genotypedone yesterday and will seethe doc asapwhen it's ready.
Namaste
 
« Last Edit: October 08, 2010, 01:48:53 AM by Fondoo »

Offline bocker3

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  • You gotta enjoy life......
Re: Scary message from doc
« Reply #16 on: October 08, 2010, 10:29:00 AM »
If you think that it is your drug abuse issues that are leading to non-adherence, then I would certainly take your recovery very seriously.

My suggestion is to go to a meeting everyday for the next 90 days.  Listen to what folks are saying, find yourself a sponsor and call someone BEFORE you use.  Look at sobriety as a day by day thing.  If you want to use -- tell yourself you will do so -- TOMORROW, but not today.  In the morning, if you feel the same, say the same thing again -- TOMORROW, not today.

Sobriety can be achieved, one day at a time.  I know this from experience.  On the 29th of this month I will celebrate 21 years sober.

Feel free to PM me whenever you need/want.  Alcohol and drug abuse can lead to such destructive behavior. 

Sending good thoughts out to you.

Hugs,
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Scary message from doc
« Reply #17 on: October 08, 2010, 10:48:58 AM »
Sobriety can be achieved, one day at a time.  I know this from experience.  On the 29th of this month I will celebrate 21 years sober.

Congratulations, Mike! That's quite an achievement and one to be celebrated.
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Joe K

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Re: Scary message from doc
« Reply #18 on: October 08, 2010, 12:19:24 PM »
Oh well I get what I deserve I have been feeling pretty self destructive since starting chemo again six months ago (truvada/viramune) and have missed many doses.

Hey Tracy,

I've been reading your threads and I would like to leave you with some food for thought. I'll start by suggesting that you stop believing you deserve to be sick, as opposed to your not doing what you need to do, to regain your health. I'm a parent and trust me, you want to be there for your children, but more importantly is that they need and love their father. I also understand the challenge of drug addiction and Mike is spot on that until you consistently address your addiction issues, HIV drug adherence will remain problematic. I also feel your pain in your struggle with your ex-wife and I caution you against allowing your emotions to cloud your judgment about your parental rights.

When I divorced in the 80s, much less was known about HIV and my ex-wife tried to limit my time, with my daughter, over fears of her becoming infected. But rather than my attacking her unfounded fears, I found that appealing to her maternal instincts and by jointly devising a plan for possible accidents when Kate stayed with me, we were able to make things work. I know how hurtful divorce can be and given your other challenges, it can appear to be overwhelming, so I suggest that you divide and conquer. What I did, was to ask my ex, what she feared most, regarding my visitation and then I addressed those issues. When I was able to prove, that all I wanted was reasonable visitation, in a safe environment, a lot of the anger and animosity faded away, from both of us.

To me, your options are difficult, yet clear. You can either decide that your life is worth living or not. You can either do the things that will provide you with sobriety, so you can develop sound practices in adjusting  and living with HIV, or you can remain on your current path. The decision will always be yours, however you are not alone with your HIV infection, as it also involves everyone who loves and needs you.

I believe you want to succeed, otherwise you would not be here, nor seeking sobriety. I will not lie and tell you it will be easy, however I believe that you can and will do this, maybe not solely for yourself, but for your children. Tracy, as I read your posts I see a very caring and decent father, who has many challenges, however the choice, on what you decide to do, will always be yours. I believe you will succeed and if there is anything I can do to help... all you need to do is to ask.

Offline bocker3

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  • You gotta enjoy life......
Re: Scary message from doc
« Reply #19 on: October 08, 2010, 03:59:17 PM »
Congratulations, Mike! That's quite an achievement and one to be celebrated.

Thanks Ann.  My goal in mentioning this was to show that longtime sobriety is possible -- not for accolades -- but I do appreciate it.   :)

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline emeraldize

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Re: Scary message from doc
« Reply #20 on: October 09, 2010, 02:11:28 PM »
Tracy,

Brevity leads to clarity.

I second all Killfoile wrote. I'm a parent.

Like Bocker, I'm in my second decade of sobriety, plus no drugs and smokes.

Tomorrow, I start meds because my t-cell count says it's time.

I'm a Buddhist-in-progress.

Do the downward dog.

Be an upward dog.

Em

Offline skeebo1969

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Re: Scary message from doc
« Reply #21 on: October 09, 2010, 02:39:29 PM »
Thanks Ann.  My goal in mentioning this was to show that longtime sobriety is possible -- not for accolades -- but I do appreciate it.   :)

Mike

Hey Mike, that is quite the accomplishment and one to be very proud of I might add.  I have 20 years clean myself.  I know I know, I smoke the weed...  it made those 20 years go by really fast though.
I despise the song Love is in the Air, you should too.

Offline emeraldize

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Re: Scary message from doc
« Reply #22 on: October 09, 2010, 04:39:49 PM »
Is it possible to get the munchies vicariously?

edited to correct the spelling of munchies, muchies is a disorder of those who like to shop
« Last Edit: October 10, 2010, 10:01:41 AM by emeraldize »

Offline Defarge

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Re: Scary message from doc
« Reply #23 on: October 10, 2010, 04:38:07 AM »
If you think that it is your drug abuse issues that are leading to non-adherence, then I would certainly take your recovery very seriously.

My suggestion is to go to a meeting everyday for the next 90 days.  Listen to what folks are saying, find yourself a sponsor and call someone BEFORE you use.  Look at sobriety as a day by day thing.  If you want to use -- tell yourself you will do so -- TOMORROW, but not today.  In the morning, if you feel the same, say the same thing again -- TOMORROW, not today.

Sobriety can be achieved, one day at a time.  I know this from experience.  On the 29th of this month I will celebrate 21 years sober.

Feel free to PM me whenever you need/want.  Alcohol and drug abuse can lead to such destructive behavior. 

Sending good thoughts out to you.

Hugs,
Mike

I'll second what Mike says and add what was suggested to me - to get a Big Book and read it. I celebrated 13 years last month. And I didn't do anything perfectly, except that I never picked up a drink or drug...I've been through break-ups, a friend's suicide, the loss of my grandmother, divorce and an HIV diagnosis without having to use. Stick around for the miracles, Tracy. ox

Offline Fondoo

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Re: Scary message from doc
« Reply #24 on: October 10, 2010, 11:58:00 PM »
  Today I have 14 days ;D. I am feeling very fine and thank you all for the kind and supportive posts. I got a sponsor few days ago. My last sponsor of over 10 years died two years ago.I have 12 years recovery from my drugs of choice meth/coke but the disease is the disease wether it's being a street level junkie or smoking grass in Hawaii I am ready for full recovery.
    I am also realizing that the extreme ADD symptoms and depression that have plagued me through out my recovery have all but disappeared and to that I credit my yoga practice. I am a very fortunate man
 I hope there can be peace between my x some day but atm she is out of her mind with hatred and willing to say and do anything to express it. The current situation is she has got a temporary restraining order against me because she claiming physical abuse for the last 7  years.Considering I have never hit or harmed a woman physically in my life it should be interesting at the evidence hearing. Unfortunately that hearing is not till November 30th.I sure miss my little girl

 


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