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Author Topic: 25 years poz, many complications, need support and advice please!  (Read 3032 times)

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Offline jm1953

  • Member
  • Posts: 262
Hey members,

It's been awhile since I've been on this site so I hope you are all well.  Always feel assured and comforted you are here.

Just wanted to get an idea if others at my stage of this disease are having as many physical problems as I am.  Also searching for advice and direction.

Now going on 26 years with the virus and having been on meds since 1995 to present, things have been going steadily downhill the past three years or so.  Not sure if is the virus, my age, all the meds I've been taking for so long, poor doctor care, or all of the above.

I spend most of my time at the doctors or specialists office being monitored or having procedures performed on me.  The list of things wrong with me seems to grow by the month.  Feel like I'm on a downward spiral even though my CD 4s are stable in the 700's and no viral load.

Currently have Stage three, almost four, kidney disease: a blood disease known as polycythemia requiring monthly monitoring; a number of skin issues, mostly non-specific rashes, folliculitis, grover's diseases, and some skin cancers; venous reflux disease;  sicatica and scholeosis (sp); Blepharitis, disease of the eye; prostate disease; major foot problems lipoatrophy; thyroid problems to name a few.  Plus depression due to a major death in our family, and the ongoing legal problems with my family and probate. 

My primary/HIV physician is no longer connected with the major medical system I am affliated with.  There are all my other doctors and specialists, and they are all on state of the art EMR.  He is essentially out of the loop and doesn't communicate with them.  A team approach is definitely neccesary for me I think.  Thus I feel I need to look for another HIV doc in the medical system I'm in, however I have much loyalty to my current on of 7 years.

He claims I have to about 65 or 70 as a guess on life expectancy.  After reading posts, this seems to fit into the thoughts of others based on when I was diagnosed in 87 and being on meds since 95. 

If any of you could share some of your experiences and symptoms with me I would surely appreciate it so I don't feel like such a lone ranger.  And any advice or thoughtful wisdom you might have would be a great comfort.  I'm really feeling like giving up everytime I find something else wrong with me.

Thanks again for being there!  You all are great.  We have little or no support for long termers where I live.  On a positive note, a friend of mine who is professor at a major ivy league university in the east focusing on HIV care is working on a grant to research long termers, a subject long overlooked in my opinion.

Best,

Jeff
Positive 25 years. 7/21/2012 Current CD 4: 780 Viral load: less than 50. 38 to 40%
Current drug regimen, Isentress, , Emtriva, Sustiva Wellbutrin, Klonipin, Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

Offline aztecan

  • Member
  • Posts: 5,396
  • 29 years positive, 57 years a pain in the butt
Re: 25 years poz, many complications, need support and advice please!
« Reply #1 on: April 20, 2012, 11:05:52 AM »
Hey Jeff,

Good to see you are still around.  ;)

Man, it sounds like you have been going through it lately.

I can commiserate to some degree. I am heading for my 27th anniversary of living with the bug and I have a few things going on.

My cholesterol is not great, but it is about as good as it's going to get because I can't take statins to lower it.

I have ongoing lipodystrophy issues, as you do. I would swear my humps are getting larger.

The fatigue is becoming a real problem without some kind of assistance, like stimulants (coffee, not the illegal kind) needed on a pretty much daily basis.

I also have the aging things going on, like joints that are not happy in the morning,

But, I don't seem to be seeing as much happening as you do.

I would agree that you need a team approach. While I understand your loyalty to your HIV doc, he really needs to get on board with the others to ensure they are helping you attain the best quality of life possible in your situation.

Do you have options? Are there other doctors around that you might consider?

Ultimately, it is going to have to be what is most comfortable with you. If you can't/won't switch doctors, perhaps you will need to do the coordinating of your care, such as getting printouts of all your labs, etc., to share with all the doctors, etc.

I always keep copies of my labs, etc., anyway, just for my own records.

Keep us posted on how things go.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Theyer

  • Member
  • Posts: 2,509
  • Current ambition. Walk the Dog .
Re: 25 years poz, many complications, need support and advice please!
« Reply #2 on: April 22, 2012, 02:25:02 PM »
You are not alone .I have organized a 3 month break from tests, investigations I am so sick off the routine that develops when the pains ect are investigated. A year ago I asked my main HIV doc wether this is what I should expext he finally agreed that it probably was when I negotiated the 3 month break , break a month ago. As to advice find anything in your life that gives pleasure and hold on to it.
m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline jm1953

  • Member
  • Posts: 262
Re: 25 years poz, many complications, need support and advice please!
« Reply #3 on: April 22, 2012, 07:47:54 PM »
Thanks Mark and Theyer for your support and advice.  You both bring up very good points.  And this disease is so individual it seems different for everyone.

I do play the go between taking labs to and from doctors if they aren't on the same Electronic Medical Record System.  Right now all my docs are on the same except my primary HIV and internal medicine guy, who really should be steering the ship.  Been a bit disappointed in him but stuck with him.  So, I've decided to make an appointment in the hospital medical center where all my docs are except for him with an HIV/Internal Medicine doc.  Having EMR and being on the same campus, I think he will have a much better opportunity to use the team approach in my treatment.

Also, I do need to focus more on pleasure, less on self-care, but unfortunately my body does not allow me to do that too much right now.

Keep you all in the loop.

It's good to be back too.
Thanks again.  Best to both of you also in your challenges.

Best,

Jeff
Positive 25 years. 7/21/2012 Current CD 4: 780 Viral load: less than 50. 38 to 40%
Current drug regimen, Isentress, , Emtriva, Sustiva Wellbutrin, Klonipin, Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

Offline Pilot

  • Member
  • Posts: 126
Re: 25 years poz, many complications, need support and advice please!
« Reply #4 on: April 25, 2012, 02:28:10 AM »
I believe that HIV affects everyone differently and I think its because of heredity since we are all the sum of or ancestors.  I mentioned to my doc that things are not working like they used to and he said well your labs are all great but the virus is getting older and so are you.

The  only thing I could suggest is do what you can when you are feeling good and on days you feel like crap just relax on the sofa because who gives a crap if the dust bunnies are multiplying.  Name them and take them off your taxes.

Offline suziel65

  • Member
  • Posts: 3
Re: 25 years poz, many complications, need support and advice please!
« Reply #5 on: May 05, 2012, 06:26:35 PM »
Hi 25 years poz,
I understand that you may not want to leave your md.  But as a patient you must do what is best for you.  When you go out to a restaurant don't you want the food the way you want it and if it is not right don't you send it back.  You must be diligent with your health care.  As a 25 year survivor I have been on meds since 94.  I have had stage IV breast cancer and I have been a survivor for 4 years now.  I am a registered nurse and I tell patients all of the time.  If you do not like your Dr. or if he is not up to date with the latest meds and diseases go to another.  Interview your dr.'s you have to be your own advocate.  You are also very vulnerable now related to your situation with your family.   You are going to have to exercise to get your mind off of your problems and release some of those endorphines.  Depression will drag you down and decrease your immune system.  Just from reading all of your health problems that you have going on, it sounds like you must make changes in your life.  I know it is hard.  You must surround yourself with positive people and try to see your glass half full, no half empty.  Doctors are not God, they can only tell you what they think the life expectancy of someone your age that has your disease may last, they do not know.  I promise you.  You are an individual person not just a STATISTIC.   You are you and wonderful. 
Good Luck
Love, Hope and Happiness

Offline weasel

  • Member
  • Posts: 1,681
Re: 25 years poz, many complications, need support and advice please!
« Reply #6 on: May 11, 2012, 07:54:01 PM »


    Hi Jeff ,
                i am sorry you are feeling so bad and things are going south
     on you .

      I can relate to a lot of your issues .  HIV   really makes me feel awful .

      I have skin and hair issues , Being numb & itchy also  gets on my nerves .

      I feel  DEAD  when I wake up    :o

        I have had HIV for so long , But my I.D. Doctors tell me " Don't let it
        rule your life " 

         I fight depression everyday .  My feet kill me !   
         If  I stand in one place I fall down ...   Not good .

         Now my Doctor tells me my liver has been going bad for over a year !!
         Luckily  I saw a new doctor that is concerned with it .

          I am an Identical Twin ,  I shudder when people now say things
         like you look so different  !    HIV  has altered my body , not good
          for my self image .

         I can only  work a few hours a day ,
         Even my husband does not  understand that .   If  I over do it , I end up in
          bed for a day or two .

         I hope to live to 92  :)

                                   I let you know if i make it ,
                                                                       Carl  :-*

       
" Live and let Live "

Offline harleymc

  • Member
  • Posts: 210
Re: 25 years poz, many complications, need support and advice please!
« Reply #7 on: May 11, 2012, 11:50:37 PM »
Caro Jeff,
I don't know if I can offer any advice on how to deal with the multiple health issues we seem to go through. It gets to us all. Some days we cope a bit better, other days are worse.
If you can get to a position where the communications/ data sharing between your HIV specialist and your other Doctors is frictionless that would definitely be a plus.
Hang on in there.
Hugs to you
Harley

Offline miked

  • Member
  • Posts: 12
Re: 25 years poz, many complications, need support and advice please!
« Reply #8 on: May 21, 2012, 01:13:14 PM »
Yea, I don't care what the studies/docs tell you, there are long term effects.  Been + since 1985 and on meds since 1987.  Have had major fatigue much of the time.  Changing meds has helped and is something to look into.  Depression is a major part of long time + and be sure to treat it also.  Be sure to watch your diet (including alcohol, smoking, and drugs). Unfortuantely I think we are all just aging faster than those that are negative.

Offline jm1953

  • Member
  • Posts: 262
Re: 25 years poz, many complications, need support and advice please!
« Reply #9 on: June 05, 2012, 09:14:19 PM »
Thanks all for your caring.  Appreciate and have innitiated alot of the suggestions you have made.  My heart also goes out to others of you who feel the ravages of this disease even though your numbers are good.  I know how you feel.

I have found a new doctor who I think will be much pro active in my HIV.  He is on EMR and practices team medicine.  So all my docs are now in one place and can communicate with one another via EMR or conferencing.  I am still retaining my old doc for internal med stuff.  He's so overwhelmed I don't think he'll miss treating me for HIV.

Also, I am making great progress with my attorney.  She is really showing her GAY colors now fighting to get as much out of this probate as possible so I can live a good quality of life while I have it.  She seems to get it all now and is a fighter.

My therapist is great too.  So all and all I think I have a good team in place.  But I've learned our existing is day by day and to just go with the flow.  Us long termers are in a special nitch of this illness and docs seemingly don't know what to do with us because we are the trailblazers.  So I pay attention to the doctors who wish to take on the challenge, and leave those who dismiss me because my 15 minute appointment may go over.  You know what i mean.

Hang in there and thanks again for all your comments.  So appreciated.

Hugs to you all,

Jeff
Positive 25 years. 7/21/2012 Current CD 4: 780 Viral load: less than 50. 38 to 40%
Current drug regimen, Isentress, , Emtriva, Sustiva Wellbutrin, Klonipin, Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

 


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