Main Forums > Pre-HAART Long-Term Survivors

a call from my doc...

(1/4) > >>

mitch777:
ok, broke out in tears again. I got a call this morning from my ID doc of 18 years. missed his call by going to the mailbox. he said he wanted to chat.

warning will robinson! warning!

I thought it was going to be about my needing to let blood due to my testosterone therapy bring my red blood cell count too high. nope. he called back at 8 pm tonight.

He went to some kind of hiv conference in San Francisco to here a speaker talk about neurocognitive issues. He told me he waited to talk to the speaker about me.
wow.
my doc is in his mid-late 60's and has been the most compassionate doctor I have ever met.

he mentioned something about a spinal tap. not sure yet what he expects to find or more importantly what he would do with the information. guess I will find out in less than 2 weeks when we go over it all. scary but reassuring at the same time.

this spring/summer has been hell. mom, dog, teeth, new antidepressant med, disability, red blood count, cholesterol, and simply just whipped out. it's really difficult to know what is causing what even though I try my best to give space between everything.

I wish I was presented with one issue at a time. not happening.
not happening in the past 3 years. aging with hiv after 31 years has become a challenge that I hope newly diagnosed folks will have it easier.

I asked him if he could give me my med history from the beginning of this adventure. my record keeping has been sad. who would have guessed that I would still be around today? not me.

I've been pretty lucky over the years. luckier than most. the last few years have come as a surprise to me. I need a break. a break from doctors and further deterioration of my body. not sure if it's in the cards. each passing month/year seems to bring another health issue. (or three)

sorry rambling on.

no matter what the future brings I am grateful that this site exists.

thanks for listening.

m.

Jeff G:
We are lucky you joined us here . I can relate to treatment burnout as I call it , I have felt the same way many times but I keep plugging along because many times just when I think I have had enough and want to give up is when the breakthrough comes .

Your lucky to have a doctor that doesn't leave your case at the office when he goes home , we should all be so lucky . 

mitch777:
Thanks Jeff. Ya, treatment fatigue is a good description. I don't have any intention of giving up, it just gets so tiring at times.
 
Geez I should stay away from posting when I am emotional and tired. My thoughts came out like a mixed bag of mumbo-jumbo.

I teared up when talking to the doc because he made me feel that I mattered. They were good tears. I do feel very lucky to have him as my doc.

He talked a bit about neurocognitive issues as related to persistant inflammation in the brain from the virus. He didn't get into details other than to mention a spinal tap. Would anyone venture a guess as to what he would be looking for?

I can't recall him ever mentioning inflammation before other than in passing. I'm thinking he may have learned a few things in SF and thought they applied to me.
Maybe he has a secret weapon that will turn my brain around.  8)

Being on Viibryd has helped my headaches more than anything and has smoothed off the edges from my depression but has come at the cost of a fuzzy brain. It just adds to the complications of my neurocognitive issues. If Viibryd wasn't helping the way it has I would dump it but having less pain trumps the fog.

I'm really not sure why he called seeing that I have an appointment soon. Not that I minded at all, just a bit odd.

Anyway, sorry for barfing up a bunch goop last night. ::)
Just another day of Mitch lost in space.
 

LongTimeSurvivor:
Spinal tap...pudendal nerve block shot...AVOID at all costs!!! Well, avoid the nerve block shot...believe me you don't want to know. The spinal tap...eh, what can go wrong... :o

Fatigue with everything is an issue. Had gotten so bad because I couldn't remember everything that I was dealing with. There was always something new arriving in the mail reminding of an unsettled issue from a year ago...just now getting attention. Luckily two letter arrived recently that settled some matters. Took about two weeks for it to actually sink in that I wouldn't have to pay the $60,000 hospital bill from when they almost killed me which was why I had the bill in the first place.

Perhaps you should start charting your history on the bedroom wall across from your bed. That way at night and in the morning you can observe your progress through the years. Or maybe just put a nice picture of naked men there instead.

Yes, it matters to feel that you mean something to someone. That's why I like my doctor. Same thing, he knows me, he talks to me not at me. Makes a big difference in how much you trust someone who's in charge of your health. Take him some donuts with chocolate glaze the next time you go in. Show him "the Love."

All right, slightly silly with that last suggestion but I have to joke otherwise I'd probably spend too much time crying. Keep us up to date with what's going on. Hope it turns out to be something good for you.

Theyer:
Mitch,
Spinal Taps would never be the first choice but over the years I have had five , they do not last long and a practitioner who has some skill and confidence will get it done and dusted for you then you can treat yourself to your brave man treat. Plus you get a new badge for the LTS shirt.

What is it for ? ---I tend to shy away from the med stuff unless its about me. However the fluid in the spinal column provides very accurate diagnostic evidence for a variety off ailments , so they are done to diagnose and to monitor how well certain treatments are progressing.

So in my case with 2 lots off chemo , that was anything BUT straightforward I had 4 off the S.T,s by number 3 I was quite blase . Oh just get on with it dear. kind off thing. Allways pleased when it was over though.

You have a similar , it reads relationship with your ID doc as I do , so be honest with Him/her have a breakdownette with then say if it does its all too much ifeellikeiamlosingcontrol,  snot should be running now , mostly well 99.9% off the time I keep it together , but At the moment Ijustfeelthatihavetoo.....snot should be in free flow if you are doing this right by now.

That way your Doc , who you respect, fully knows the score and can start addressing it.

Why did he ring late at night---he is a good Doc who was fired up by the what he had heard and wanted to get on and put it into practice , great wish all Doc ,s where like that.

Now back to the important stuff that back yard in London .........................

Navigation

[0] Message Index

[#] Next page

Go to full version