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Author Topic: Everything's spinning-- where to start?  (Read 3653 times)

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Offline babelogue

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Everything's spinning-- where to start?
« on: November 16, 2013, 10:45:32 AM »
I am a 30 year old, gay male from the United States.  I have been living in Madrid, Spain for almost two years.  Around the beginning of October, I started to develop painful issues with my bowels (I'll try not to get anymore graphic than that).  I have private insurance here, which allows me to see a great English speaking doctor who I've seen since I moved here; however, I had to wait until November for my new policy to go into effect before I could make an appointment.  I consulted my doctor about my problem; he referred me to a specialist, who then said I would need a colonoscopy.  I also asked for an hiv test, since it had been July since my last test.

I woke up on Wednesday morning to find an email from my doctor that stated I would need to come in for a "final test".  I knew what this meant.

I went to his office, and he gave me the results from the ELISA: Positivo.  He explained that they ran the test twice, and they would now need to do a Western Blot to confirm the result.  He said that he saw what could be interpreted as a cross reaction of some sort, but he didn't want to get my hopes up, and the next test would confirm this.  I admitted that it was unlikely a false-positive, and was prepared to confirm this result with another test.  He said I would need approval from my insurance for the Western Blot test, since it was more expensive.

This is my current problem:  I have the colonoscopy scheduled for the following week-- another expensive procedure, which required an even more detailed approval from my insurance.  My doctor said it might be best to wait until the colonoscopy is approved and completed before we can get the actual confirmation for hiv because the insurance company may question these as pre-existing conditions, which could result in losing my coverage.  I agreed that I would wait until after the colonoscopy, which I thought would be easy… in the office, I felt like I'd accepted the positive result… but at times, I catch myself pushing away and pulling back the hope of a false-positive.  It's really frustrating, and I'm very stressed out.

To add to this, I'm looking for a new flat, followed by the fun task of moving, working with little free time, preparing to visit home for the holidays and just not sure where to start.  I also see all of these paths before me, and I can't clearly think about what choices to make… and some of these choices may not be the best.

I also know I eventually want to move back home to the States… but I'm really not sure when.  Of course, because of the bad news, I naturally feel more homesick-- so, these days, I want to go home now.  But I can't because I have commitments here until September… maybe I will change my mind by that point.

I'm sorry to write so much, but I feel so alone right now and I really wanted to put things in perspective…   Here are some things that keep running through my head.

1) I've considered waiting a few months before I see an hiv specialist… Right now, my Spanish isn't at a level where I feel I could have productive correspondence regarding health issues.  Do you think I can wait 4-5 months before I see the specialist, so I am prepared?

2) I'm not sure if I should start treatment.  This has been a big question in my head, because if I were in a convenient situation, I most likely would start treatment immediately.  However, I fear that I won't adhere to the medication schedule in my current living situation.  Also, I am afraid that when I do move back to the States, it will be difficult to continue treatment uninterrupted, as I transition.  This transition will require discretely finding a new specialist and some means for treatment-- plus I would have to find a new place to live, career, etc
Given these circumstances, is it better to wait to receive treatment?
Based on the time it will take for this transition, I'm guessing I won't be able to start treatment for at least two more years….

3)  I am a very healthy person-- I go to the gym 5 days a week and maintain a healthy diet.  Other than hiv, I have no other major health problems.  I am a smoker, but I've decided Monday will be my quit date (a can I've kicked down the road for a long time).  Plus, I don't drink very often.  Will a good level of health minimize the urgency to begin treatment?

4)  Any other information you might give a person newly diagnosed as hiv positive?

I'm going to stop now, because my mind is flooded with so many questions and possibilities, I could write a book.  For now, this is my secret, so I'm reaching out to any of you for support.

Thank you.

Offline 2tcells

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Re: Everything's spinning-- where to start?
« Reply #1 on: November 16, 2013, 11:22:45 AM »
Well I think your going to need to find out what your cd4 count is and your viral load first. Im new tothis too but I think waiting 2 years for treatment would be a very bad idea. In that time your immune system could get a lot worse making u more at risk for getting very sick and you may not get your cd4 level back up to a safe level if you let it drop very low. Im sure some people who know more than me will give you some more input soon... but just goto the dr and do what they say. Put a alarm on ur phone and take ur pills everyday dosnt take much time out of ur day so I think u could do your pills where ever you decide to live
7-4-13 diagnosed   cd4- 2      vl-220,600
8-3-13                     cd4- 4      vl- 448
9-3-13                     cd4- 40    vl- ud
11-3-13                   cd4- 54    vl-ud
1-9-14                     cd4- 62    vl- 43
4-3-14                     cd4- 110  vl-ud
8-5-14                     cd4- 95    vl-ud
9-23-14                   cd4- 97    vl-ud
1-22-15                   cd4- 156  vl-ud
4-14-15                   cd4- 122  vl-ud
6-12-15                   cd4- 148  vl-?
8-15-15 start stribild
9-3-15                     cd4- 152 vl-ud
11-25-15                  cd4- 211 vl-20
2-17-16                   cd-4 194 vl-ud
4-1-16 start genvoya
5-10-16                   cd-4 220 vl-ud
9-19-16                   cd-4 182 vl-ud
12-2016                  cd-4  267!vl-ud

Offline tednlou2

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Re: Everything's spinning-- where to start?
« Reply #2 on: November 17, 2013, 12:52:56 AM »

Welcome to the forums.  Well, you aren't considered HIV positive, until you have the confirmation.  Personally, I wouldn't wait that long to find out and to learn where my CD4 and viral load is.  If you are indeed poz, then you have no idea whether you have a very low CD4.  You certainly wouldn't want to get an opportunistic infection, if you could know now that your immune system was already greatly compromised and that could be prevented. 

I didn't realize folks in Spain has to deal with preexisting conditions.  I guess America is moving faster than some places.  I don't know all the details of health insurance, but I thought preexisting conditions could only apply once you sign up for healthcare initially.  I thought once you have health insurance, then anything new could no way be considered a preexisting condition.  I mean, then anything we go to the doc for would be considered a preexisting condition.  Perhaps there is something I'm not understanding.  It would be different if the HIV test was done prior to your insurance becoming effective.

About not being sure whether you want to start meds and whether you would be adherent at this point-- that is putting the cart before the horse.  You need the confirmation and then you need to see where your health stands.  It could be you're okay for now or for a long time, and you can decide when is best to start.  You could take the time to improve your situation and make the choice that is right for you.  But, you really need to find out where things stand.  I would not wait that long.  The issue you're having with needing the colonoscopy could be HIV related.  Or, it may be totally unrelated. 

Keep in touch.  Again, it is quite possible I am not fully understanding the issue with preexisting conditions and especially how things are done there. 


Offline mecch

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Re: Everything's spinning-- where to start?
« Reply #3 on: November 17, 2013, 06:11:18 AM »
Sorry you got that news.

You need to get the western blot and get confirmed HIV+ or neg. This is the most important thing because as is, your mind is spiralling off into too many hypotheticals.

You need to insist with whatever resources you have available in spain that ALL your current health challenges are identified and clarified. 

Your butt issues may be related to an HIV infection and also have you been thoroughly checked for every imaginable STD in the butt??

One of your hypotheticals makes sense - being hesitant to start HAART until you can reliably stay on it.  But cross that bridge when you get to it. The next three bridges are:  Confirmation test.  Current state of immune system if HIV+.  And fixing your bum.

Smoking, working out, "healthy", whatever, its all secondary man. If you are HIV+ you have a pretty much genetically set way your body is going to react to a certain infection and you are going to need specialist treatment. Period.

All these hypotheticals and wonderings about this or that, connecting to stalling, are a VERY bad   unconstructive road to go down when dealing with HIV.  (though of course, life, situations, setting, all can make it difficult to meet things head on.)
« Last Edit: November 17, 2013, 06:41:50 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline babelogue

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Re: Everything's spinning-- where to start?
« Reply #4 on: November 17, 2013, 06:33:44 AM »
Thank you for responding, 2Tcells and Ted.  As I said, I'm feeling quite alone right now, so I can't tell you how good it feels to have someone to help me sort this out in any way they can help.  No words are too small at this point, so thanks again for that.

I still feel like this hasn't really hit me yet.  Perhaps it's because I don't have the 100% confirmation from the Western Blot, but I hope that this confirmation will come soon. (I know it sounds incredibly stupid, but part of me just wants to ignore the confirmation and pretend like nothing has changed...)

As for preexisting conditions, I'm sure you are right, Ted.  This was the first time I actually had to go and buy health insurance-- it was always organized by my employer in the past.  I didn't think preexisting conditions were an issue in Spain (and I think it's finally becoming a non-issue in the States).  However, when my doctor warned me it might be best to wait, I felt though he might be completely wrong (which he said he very well could be), I decided he probably knows best.  I don't want to risk losing insurance when I potentially need it most.  The need for the colonoscopy is really taking a toll on me, in of sense of discomfort, so it needs to happen soon.  I asked my doctor if he thought the issue requiring a colonoscopy might be related to hiv, and he said absolutely not.  He just said there was a slight drop in my red blood cells, most likely due to blood loss from the bowel issues. Then again, he doesn't specialize in hiv, so maybe he's wrong on that.

This is what's so frustrating:  I have all of these hurtles I have to jump before I can actually proceed with seeing a specialist.  The colonoscopy and treatment for that issue, insurance approvals, waiting for the Western Blot test, then preparing for a language barrier related to highly technical hiv medical terminology... all while trying to fulfill obligations prior to my diagnosis, like finding a new apartment.  Though I'm trying to maintain an optimistic mindset, it's becoming overwhelming and I'm so stressed-- hence, everything is spinning.

As I mentioned in my previous post, I am quite healthy (with the exception of smoking-- which ends tomorrow!)  This, added with the fact that I was hiv negative less than five months ago, I was hoping that I might be able to buy some time.  I'm not sure if I've truly shown any symptoms... a few weeks ago, I felt what was a nasty cold, but it seemed no different than what was going around work at the time.  I woke up with what could be considered night sweats two nights last week, but I contributed this to my very warm comforter, as they went away when I switched blankets... No swollen lymph glands, no fever, no rash...  Still, this is all new to me, which is why I'm reaching out to you all.

I'm sure I will reach out to you with many questions in the future, because I literally have no one.  At this point, I've decided this will be my secret.  I refuse to tell anyone-- family, friends, even hiv positive friends.  I don't want anyone to know, and if that means living like a monk for the rest of my life, that's what I have accepted for my future.  Maybe this will change as I grow and understand all of this, but right now, I envision this as something I will keep from others forever.  I've even begun constructing the narrative as to why I never date anymore.

While I have all of these current hurtles to jump through, my mind is heavily concentrated on the future and treatment.  I want to start treatment as soon as possible, if anything, to prevent the spread to other people (though I may just remain celibate for the rest of my life); still, I can't help thinking how I will make that transition when I return to America, and need to continue treatment uninterrupted.  I haven't lived there in two years, and I haven't lived in my home state in almost 8 years.  While I'm certain I can get the medications needed while I'm here in Spain, I fear what options I will have when I will need to continue this treatment, uninterrupted.  How will I find the right doctors, without revealing my secret?  How will I be able to pay for the expensive medication?  I've read it's bad to start treatment if you expect you'll have to stop it... this is my primary reason for avoiding treatment now....

It's only been a few days, and I'm really trying not to let hiv control my life... but it seems based on my circumstances, hiv will surely control my life for a while.  I've even considered going back to school when I return home to change to a profession that will ensure I have the money and resources to see this through... Not because I WANT to; it's not particularly a profession I think I will love, but it's something secure that will allow me to keep my secret... then thoughts of treatment come back to my head-- how will I be able to continue/pay for treatment when I'm in school?...

Again, I'm sorry for the long post... I just have so much swirling in my head right now, I can't help but vent to anyone who will listen, because I feel like I have no one.  This will be a long road that I have chosen to walk alone.  This is why I can't thank you all enough for reaching out in any way to help me make sense of all these pieces before me...

Offline babelogue

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Re: Everything's spinning-- where to start?
« Reply #5 on: November 17, 2013, 06:57:07 AM »
Thanks to you as well mecch. 

I suppose because my diagnosis is so recent, and due to the current barriers I am facing at this stage, I can't help but to hypothesize possible paths I will have to take... It would be different if I were in America, but eventually I will have this huge transition to make.  Normally, I wouldn't decide to return home for another two more years... but this has really changed my outlook on life, and yes, I feel like hiv is controlling my future path.  I miss my family so much right now, even though I can never tell them.  I've tried to keep my mind occupied by doing other things, but due to the bowel issues, I've been in bed for four days (again, sorry to get graphic, but it's because I'm having trouble controlling my bowels, as they can be very irritable).  While watching movies, listening to music, Spanish studies, magazines, and facebook updates grab my attention for periods of time, I can't control my mind from returning to the "what if" questions... Added with all of this is the torture of an unrealistic hope of a false positive that still surfaces as I continue to wait for the confirmation test.  I truly do tell myself, "This is it.  Time to get busy starting your new life."  But then that hope sneaks back that I will get another chance... Of course, I try not to grasp onto this hope because doing so will only result in devestation... but I can't deny that it still comes back.  Basically, I can't really control my thoughts right now because I have no concrete basis to navigate through them....

Offline Ann

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Re: Everything's spinning-- where to start?
« Reply #6 on: November 17, 2013, 08:08:49 AM »
Hi Babe, welcome to the forums.

Regarding your "pre-existing issues" problem, I'm not so sure it is a problem.

In your first post, you stated, "I also asked for an hiv test, since it had been July since my last test." Assuming this test result in July was negative, I can't really see how they could class a positive result in November as anything other than a new infection and a new diagnosis. Maybe a point to bring up with your doctor. You really need to get a confirmation one way or the other. False positives do happen.

Good luck going forward, and please know that a poz diagnosis isn't the end of the world. It's challenge, but not insurmountable.
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Offline babelogue

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Re: Everything's spinning-- where to start?
« Reply #7 on: November 17, 2013, 09:16:05 AM »
Thank you, Ann.  I'm really sure if I pushed on the issue, perhaps it would work out as we expect and everything would be approved.  However, simply getting the approval for the colonoscopy has been an expected headache of dealing with Spanish bureaucracy-- I've been given multiple conflicting instructions, visited insurance offices, been given incorrect phone numbers, wrong approval forms etc.  Added to this is my limited Spanish.  I have the Spanish to basically navigate all of this, but not enough to be forceful to get the actual information I need; hence why it's been almost a week, and I still don't have an approval from my insurance for the procedure, which is on Wednesday!

Time and the inconvenience of the bowel issues also makes it difficult to follow the ever changing steps given to me by different people throughout my insurance provider.  These all sound like excuses, but I assure you, it's not been easy.  I've even had Spanish speaking friends help me with the approvals... but my desire to keep this a secret hasn't left this as an option when requesting approvals for the Western Blot.

So, I'm left with accepting the doctor's suggestion:  Have the colonoscopy, followed by a return visit for the confirmation hiv test.  It basically means waiting another week, plus a few days for the results...   I'm trying to be patient, but all of this is making me feel crazy.

Offline Theyer

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Re: Everything's spinning-- where to start?
« Reply #8 on: November 17, 2013, 05:48:55 PM »
Hello b,

I have read throe the thread and i am sorry that this is happening. I am one off the folks in the LTS group and hear are my thoughts .All the advice you have had is good, and I want to emphasize one point. At the moment, now, the biggest problem you have is the level off stress this has put on to you. The colonostopy and the further HIV test is going to happen , the time Gap in no way is going to effect your HIV at this stage at all, so deep breath, stop, slow down all the ? you have will get answered in the mean time as much energy as possable put into treating your self Kindly. Develop a voice that says , However much I fret at the moment it will make no difference to the long term, I will do all I can to de-stress.

At this point you have decided not to talk to others and you will know when that time is right. But maybe as well as posting here finding a stranger to talk to might help. So if you are religious check for the English speaking Churches in Madrid , there will be some. The Madrid HIV groups , with your Spanish and the dominance off English communication will be OK . Anything that relaxes ( with no come down ) try to find it.

So take care, its going to work out, this forum is here for you , all the best for now
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn


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