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Author Topic: spinning wheels  (Read 83540 times)

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Offline leatherman

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spinning wheels
« on: March 02, 2008, 01:21:07 AM »
I started my own blog 10 yrs ago, to keep my family informed about my life and because I've always got stories to tell!  ;) I'm usually pretty honest about my life and thoughts, and post without censoring my stories. I've only fudged some about how sick I've been at times to not worry my mom too much. (Oh, and I never mention the pot smoking either, although that's been part of some funny stories. My Baptist mom would freak out! LOL) However, I'm in a situation now that I can't post because I really don't want my mom or my partner to know how worried I am or all the "bad" things I've been doing.

So I thought I'd post here. Maybe just to vent; maybe to get some feedback (on the bold-ed section below). At least I feel you people here can understand some of my dilemma.  ;) So if you've got a few minutes, have I got a story to tell you.  :D


I was out running errands in the snow the other day and got a good adrenaline rush. Coming back home, I'll admit I was going a tad too fast for the slick, snowy, slushy road. The car slid to the left some; the car slid to the right. The spinning wheels couldn't get any traction and, before I knew it, the car (my partner's car, I should add) had spun around and was ass-end up in one of the neighbor's front lawns.  :o

That seems a pretty good metaphor for the way my life is going right now.

About a month ago, I reached Day 105 of NOT smoking and everything seemed fine. But then I took a trip from Oh to SC (an early bday present) with a friend that smoked some (not a heavy smoker at all though). Returning home, as we sat waiting to get through a tunnel in VA for an hour and a half, I got really bored and tried just one.  :-[ It wasn't too bad. Matter of fact, it gave me quite a buzz!  :o After crossing back into Ohio, the rest of our trip was spent going 10 mph through a white out - a freaking blizzard! The normal 2 hr leg through our home state took nearly 4.5 stress-filled hrs. making the 7 hr trip home into an 11 hr trek. Oh, and I smoked another half dozen cigarettes.

I might have been ok then; but I came home to a rather distressing situation. My partner (who's neg), who we thought was over the flu a few weeks ago, was quite sick. The flu was odd enough as he is usually healthy as a horse at 51 yrs old. (He's actually been running a low-grade fever for about 14 days now, making him officially "sick" for a month.) We've been to the doctor's a couple of times and they've run blood tests. StatCare claimed a low white blood count probably meant a viral infection, while the GP's more extensive blood work pointed to a bacterial infection. They're pumping him with antibiotics now and hoping to get a handle on whatever is making him so sick. During these last couple of weeks, I've been smoking about as many cigs as he has had spikes over 100 in his temperature. (about a pack of cigs a week matching his 20 spikes of fever)

Unfortunately, my partner's sickness is like deja vu all over again to me. I mentioned in another thread how my late partner's seroconversion probably occurred when he spent the month of Sept 94 running a low-grade fever and was quite ill. (That illness led to me finding out my poz status in Dec of that year.) Even though I had a "mystery fever" myself just two Valentine Days ago, my current partner's fever seems oddly similar to that other fever yrs ago. And I was sure I was going to freak out when I heard that StatCare doc say "viral" infection! Although my current partner is no where sick as my late partner was in his last days, caring for him, as he is this ill, is bringing back too many memories of my past. I know it's not exactly the same, but it "feels" the same, if you can understand what I mean.

To make matters worse, this situation has brought up something, that quite frankly I should have already considered and now am dreading doing the responsible thing. My current partner hasn't tested for hiv in quite a long time. Yes, we're monogamous and yes, we have safe sex, as that worry actually was a reason for me not "officially" committing to this sero-discordant relationship for several yrs. But I really failed on the follow-through and never discussed this to the point of us keeping tabs on his status. I was going to cop-out and try to take the easy way out by seeing if I could get my doctor to bring up the topic of testing at my upcoming appt (my partner goes with me). However, my partner brought it up himself and we talked about how we shouldn't have neglected this; and also about how much both of us actually dread the outcome we could get from his hiv test. (Who can't understand the fears of testing?  ;))

Instead of being about to celebrate turning 46 (which I never would have imagined happening to me back when I got my poz test results in 92), and celebrating the 10 yr anniversary (also on my bday) of the last time since I was hospitalized (with an OI); I'm spraying the 3rd can of Lysol this month around the house until me and the dogs are sneezing hoping not to catch any germs (I've only got about 245 little hard working tcells to fight them off and literally everyone that I know has had some sickness in the last month, so there's no where I can go to escape! LOL), worrying about whether, in a worse case scenario, I could be destined to lose another partner.

I know that may sound melodramatic; but I've lived a life (remember? I told you I had stories to tell) in which my homes were burglarized three times, had a fire that did $30,000 worth of damage, lost a partner to AIDS just before we could celebrate 10 yrs, been hospitalized with PCP on my bday, then hospitalized with pneumonia two yrs later on my bday, buried seven cocker spaniels and one cat owned by me and my late partner, and have now outlived one of the four pets I've had on my own. Not to mention 10 yrs of struggling with side effects until I found a regimen that, although it still produces some nausea side effects, has finally gotten my counts to bounce to undetectable a few times. There's been some serious situations in my life but I've struggled through, hung on, and made it this far. WooHoo! But it's also made me a little pessimistic and wary (maybe even to the point of neurotic LOL) of impending disasters in my future.

Oh, I almost forgot to mention that my 98% compliance to my haart regimen has dropped to probably 80% lately - because of having to cook differently for my sick partner and myself (chicken soup for him, real food for me LOL), because we're eating at odd times, and because I can't afford to be sick from my meds when I'm taking care of him and he is so much sicker than me for a change (shades of the past again - like when I quit taking the AZT to stay well enough to care for my late partner). It doesn't help that I get the positive re-enforcement of "not puking" when I don't take my meds. LOL I always feel best when I'm not on meds. Well, until that viral load skyrockets again!

It's been 30 days since that first cigarette in the mountains outside the tunnel, and I've smoked 3 packs now. It's nothing like the two packs a day I had been smoking just four months ago; but I still feel terribly guilty for smoking any. Every day, I think I won't light up another one; but then somewhere along the line, I just get the craving too much. I tried not to have any yesterday; but that didn't go so well. I woke up and barfed from my meds (See. I'm trying to be compliant!), my partner was still sick with his fever, and I had to go have blood drawn for my labs results in two weeks - the day before my birthday. Argh! (You'd think I'd get used to all the blips in my numbers after all these years; but how much you wanna bet these results won't be good numbers?) Needless to say, when I got a little stressed-out and bitchy by the afternoon, a couple of cigs took the edge right off.


After the car skidded out and came to a stop (yes, eventually my convoluted stories come back around LOL), I drove the car back onto the street and slowly went around the block and eased into the drive. As far as my other problems, I guess I'll have to tackle them slowly and ease things back together. The first issue to handle is my partner's sickness. If he's no better tomorrow, then we're heading to the emergency room. Tomorrow too, I'll resolve to take all my meds (and just deal with the barfing it I have to) and not smoke any cigarettes. (gosh, I made quitting my bad habits sound easy didn't I? LOL) After that, I've got two weeks to deal with testing (unless that happens in the ER), doctor appt, blood results, side effects and my birthday.

Lest you think me totally a pessimist (I mean, I DO have a plan of action to handle these issues and, I hope, perferably to a successful resolution), I learned not to worry too much about my blood results. They seem to never come back the way I think they will (bad when I think good; and good when I think bad), so whatever the results they won't be something I haven't heard before in 15 yrs. LOL (just look at that graph in my sig line. LOL) I'm also planning for my partner to get over this illness and whenever a hiv test is taken, that it will come back neg. However, that still leaves me with a problem. Just how often should my sero-discordant negative partner get tested? How did any of you handle a situation like that? How much do you worry about it?

Hopefully on the bright side, when I do finally get around to posting about this on my blog (I think I'll wait a couple of weeks for things to settle down), I'll be able to write how my partner finally recovered and that I had okay numbers from the doctor. (Eventually I'll have to talk about my partner getting tested; but it won't seem so ominous when he's not sick.) Of course I'll also write about how happy I am to get a year older and how glad I am that I haven't been back in the hospital in 10 years. WooHoo!  ;D

mikie
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline lucas clay

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Re: spinning wheels
« Reply #1 on: March 02, 2008, 06:59:00 AM »
My wife gets tested once a year.
Don't kick yourself tooo hard for the smoking my friend.
Times like this must have your mind racing, pm me if you need someone to talk to.
I just took a minute to pray for a little strength for you.
Hang in there buddy

                                                    Lucas

Offline bear60

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Re: spinning wheels
« Reply #2 on: March 02, 2008, 10:44:23 AM »
Hey
Well, dont beat yourself up.  Relax.  Your partner will get well. You can quit smoking all over again...wont that be fun??
Thinking of you! 
Joel aka bear
« Last Edit: March 02, 2008, 03:36:46 PM by bear60 »
Poz Bear Type in Philadelphia

Offline planonstaying

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Re: spinning wheels
« Reply #3 on: March 02, 2008, 11:02:17 AM »
I must  of quit smoking 50 times before i had any long term succuss.  It's really hard  the first few months but after that I stopped thingking about them so much but, I still do a few times a year and it's been ten years. On the upsiude when i did quit 6 months later I really felt huge differences in my energy level etc

My heart goes out to you. I hope you are able to get more disiplined with your   HAART. I got the flu so bad in 1990 that i have gotten a shot every year since. i was sick 6 weeks. I ran a fever/temp for a month solid may e longer and I was 29 at the time.  I imagine a 52 year old could get walloped worse :-[After the congestion cleared i was still listless with a temp. The Flu can really tear a person up like you are describing with your partner. I would say if you can get an office visit it's better than the ER. ERs suck IMO. 
If someone tells you  potential consequences of a behavior  it  doesn't  mean they jude you or mit    they may just give a shit about you

Offline Queen Tokelove

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Re: spinning wheels
« Reply #4 on: March 02, 2008, 03:10:47 PM »
Mikie----

Wow, I think you really needed to vent. If you have been doing a blog, isn't the point of it to share things with others? Or to get things off of your chest? I understand that you are concerned about worrying your Mom but maybe there was someone else in your fam who could've supported you. But then how often does your Mom read your blog or were you worried about someone in the fam telling her? I don't know where I am going with this, just asking questions, I suppose. For me, blogging is a way of getting things off my chest that I usually can't any other way. You have been doing it for so long, I just don't want to cut yourself off. You have been doing it for so long that it must be some form of help to you.

As for your deju vu with your current partner being sick. I think you are doing the most important thing and communicating with each other even if your partner was the one to initiate it.. ;) It seems to me that you both are on the same page and he is probably aware of your concerns and had a few of his own. It is good that he has decided to get tested and neither one of you should beat yourself up over not doing it sooner. I think in the back of both of your minds, you both knew the day was coming when he would have to go get tested. You both made your choice and seem to have accepted it. Now it has come to this and you both are being proactive, just go from there and try not to think the worst even if his test does come back poz. And if it does, you are already one step ahead because you know the changes that would have to be made and will waste no time doing it. All you can do is take each day as it comes...I will be praying for you both... :-*
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline leatherman

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Re: spinning wheels
« Reply #5 on: March 03, 2008, 07:01:22 PM »
Thank you all for the kind words of encouragement.  :-*

I thought about what you said Queen, and decided that I would write about what's been going on; which is good, because events have changed and now I'm going to have to write about what's been happening.

My partner, Jim, is in the hospital now  :(

His doc saw him this morning at 10 and ran more tests; but soon informed us that Jim would have to go to the hospital. At 6pm, they're still not certain what the problem is yet. The nurse said she saw the chest xray and that his lungs, and heart, looked good. That's good news because it probably rules out pneumonia; but, of course, it's still bad news because that means they don't know what it is yet. Of all things, they called in MY infect. disease doc to consult on the case! I guess we'll be finding out his hiv status, whether we want to or not, as soon as those vials and vials of blood get tested. I'd like to say that that solves one issue and takes a load of my mind; but instead this has all just pushed me towards the edge of a serious panic attack.  ::) (It makes me have some sympathy for those people in the Am I Infected? thread. LOL)

I had considered going back on the Chantix for a while to kick the smoking; but I don't think I'm in the right frame of mind for those "vivid" dreams right now. So I was a very bad boy and instead of sneaking cigs from the boyfriend's pack, I went out and bought myself a pack. sigh.

However, I have still been trying to be proactive with some of these problems and did make headway on one issue. For the past three days now I've been taking all my meds!  ;D WooHoo!

home alone  :'(
mikie
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline sharkdiver

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Re: spinning wheels
« Reply #6 on: March 03, 2008, 08:13:27 PM »
Dear Mikie

Just letting you know I'm thinking of you guys.

big hugs

Sharkie

Offline Queen Tokelove

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Re: spinning wheels
« Reply #7 on: March 03, 2008, 08:51:38 PM »
Mikie----

My heart goes out to you and sorry to hear that your mate is now in the hospital. I hope that they figure out soon what is going on. I think it's a blessing that they called in your ID doc, it should save time explaining things since he knows you already. And since you both have been dragging along about him getting tested, you know now it will happen. Try not to panic and I think the perfect person to get advice from on this would be RevMC because he is going through it now. I am sure you both could be great support for the other even if thru PMs. Just a thought.

And I am glad you decided to talk about it in your blog. You never know who might step in and support you there. And I am sure it will help you to vent as well. And you know I am here for you if you want an ear... :-*
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline leatherman

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Re: spinning wheels
« Reply #8 on: March 03, 2008, 10:14:48 PM »
Try not to panic and I think the perfect person to get advice from on this would be RevMC because he is going through it now.
ah, yes. I read his posts and think back to my time with Randy.  :'( I too can recount minute by minute, like I read in Sharkie's post the other day. So sad that so many of us here have lost someone. I know my opinion is biased, but it's not just losing a "someone", it's losing the other half of yourself.

I think it's a blessing that they called in your ID doc, it should save time explaining things since he knows you already. And since you both have been dragging along about him getting tested, you know now it will happen.
yeppers, sometimes those silver linings are pretty thin; but if you look hard enough you can always find them.  ;)  ;D My doc is a great guy and now we'll have tons to talk about at the coming up appt. LOL (turning 46, 10 yrs out the hospital, Jim's status, my med side effects, lab results, med changes maybe, pn, smoking.... oh lord, I hope he scheduled plenty of time for me. Usually I'm in-and-out within 15 mins; but not this time. ROFL)

And I am glad you decided to talk about it in your blog. You never know who might step in and support you there.
gosh I just hate bothering my friends with my troubles; but I did send out an short email about the situation and promised to write up all the details. What do you know?!? My inbox is stuffed and the phone had been ringing all evening. Of course all three of my moms have called.  ;) (my real mom, my mom-in-law, and my "adopted" mom). My local mom (the "adopted" one here in OH) had me over for dinner, since she just knew I wouldn't be cooking tonite. Moms gotta love them. They try to make everything better.  :-*

this is too weird though, having this "test" anxiety waiting to hear about Jim's lab work at the hospital. Through the yrs, as I've gotten older, I've changed my opinions about all sorts of tests. Sometimes I want to know what's going wrong; and sometimes I think I'd be better off just not knowing. LOL Way back when I first tested poz, I don't really remember being too nervous about the results; but then I was in my wild late 20's and could have been too high or drunk to have known to be worried. ROFL Tonite, I'm sitting here, smoking like a chimney, waiting to hear something in the morning.

mikie
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline leatherman

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Re: spinning wheels
« Reply #9 on: March 04, 2008, 03:41:36 PM »
After a fitful night of sleep (my first night alone since I moved into Jim's house just over a yr ago), I woke up barfing and feeling like crap. I waited a while, felt a little better and finally took my morning meds. WooHoo! So life is running pretty normal for me  ::)

No news on Jim though. Argh! They had told him that they'll probably have some results around noon, so although it was quite a struggle for me today, I got myself together and was at the hospital from 11 to 3 - and no doctors.

Of course they stopped in not 15 mins after I left. LOL

Jim says they told him all his tests came back negative. The poor fever-addled guy didn't ask whether that meant an HIV test was neg, but I'm going to think good thoughts about that one.  ;) My ID doctor's new partner is on the case, so I would suspect that they checked. I told my honey to really remember to ask the next time the doc came to see him (cause I really, really need to hear them say that he's neg). Now they're planning on running a cat scan next to look for a bacterial infection inside him somewhere causing this problem. At least he's looking a little better today, now that they've pumped some IV fluids into him; but he's still just as sick and they still don't know why.  :(

Since Jim hadn't been off the couch in nearly two weeks, I guess I'll take some time this evening to run the vacuum, wash some dishes and do some other neglected housework. You know what they say, there's no rest for the wicked. ROFL

leatherman
(who must be very wicked indeed!  :P)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline leatherman

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Re: spinning wheels
« Reply #10 on: March 05, 2008, 07:14:35 PM »
It was only raining when I went back to the hospital last night (please come watch Idol with me, the sick one pleaded. LOL); however, the ride home was pretty wild. It seems it was "freezing" rain. So branches were down in the middle of the roads all over town. To make it a more fun drive, half the city didn't have power and was in the dark. WooHoo! I'm really getting tired of Ohio Winters.  ;) Thankfully, there was power on my street (although it flashed off-and-on a dozen times throughout the night. I got tired of resetting all the clocks and finally just let them blink - and they're still blinking now. LOL)

Leaving a much cleaner home the next morning (I did a bunch of chores), I headed back to the hospital, determined to talk with a doctor. After 48 hrs, Jim was still battling a fever with only iv fluids and tylenol. Except for the results from the tests, I could have cared for Jim a lot better (and easier on me) at home rather than running up a bill at the hospital.

After putting off our calls all day, the doctor finally showed up in the late afternoon. Even though I wanted to be mad at him for not helping more, he turned out to be an alright guy. Unfortunately, it takes time for some of the tests. We do know that Jim doesn't have pneumonia, TB, hep, influenza, and a bunch of other stuff. It chilled me to hear him say that Jim's cd4 count is only 190. The doc couldn't say anything about an HIV status until the western blot comes back tomorrow, though I did understand his possible explanation of this illness to be "seroconversion". (he also mentioned the eliasa test; but I couldn't get the words out of my mouth to ask what that result was.) They're also scheduling a cat scan for tomorrow, to look for an internal bacterial infection that could be the cause of the problem. So we still don't know what's wrong; but we do know some things that it isn't.

Poor Jim. He finally broke down and cried about all this today too. Screw that "contact isolation" rule, I had to hug him. As he sobbed on my shoulder, the only words I could make out were "leave you like Randy". All I could tell him was what I'm been hanging onto to get through: he's not sick like Randy. Even if it is HIV, it's 2008 and not 1992, there are meds now, good meds. History doesn't have to repeat itself.

well, i just got a call from Jim and the cat scan has been moved up to 9pm tonite. So it's back to the hospital for me. (after american idol, i think I'll nap in his hospital bed while he's out being scanned  ;) )

Please keep us in your thoughts and prayers.
mikie
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline BT65

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Re: spinning wheels
« Reply #11 on: March 05, 2008, 07:55:55 PM »
Mike, I know we've sparred back and forth before; but this is not the time for that.  I'm definintely thinking of you and Jim at this difficult time.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline AlanBama

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Re: spinning wheels
« Reply #12 on: March 05, 2008, 08:03:40 PM »
Prayers and good thoughts to you and J. tonight!   It will be better for both of you when you find out what is actually going on, then you can face it and deal with it.

hugs,

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Snowangel

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Re: spinning wheels
« Reply #13 on: March 05, 2008, 09:01:30 PM »
Mike, I will keep you and Jim in my thoughts.
Take care,
Snow
Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

One thing you can give and still keep...is your word.

One thing you can't recycle is wasted time.

Offline leatherman

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Re: spinning wheels
« Reply #14 on: March 05, 2008, 11:57:24 PM »
i forgot how tiring it is to be the caregiver  ;D Even with Jim out of the house, there's a million things to handle and the trips back and forth to the hospital. I would promise to take care of myself and get some rest; but we all know I'm just too worried, so why bother with the lie.  :D At least, I've gotten my meals and meds back on schedule.  ;)

Jim seemed a little less in the dumps tonite. Just knowing what he doesn't have, getting that scan, and seeing some movement toward a solution has helped his spirts some. Although my heart dreads hearing what might be the problem (HIV), my head agrees, Alan, that we'll both be happier when we know what it is so we can deal with it. I handled things with Randy, I've handled things for myself for years, and I'll deal with Jim's problems too.

And Betty, isn't that what families are all about? You squabble sometimes; but when things get rough, everyone pulls together.  :-*

This has all just been very disconcerting to me. Things were so different just over two weeks ago when I was excited and happy about my trip back home to visit with my family to celebrate all our birthdays. Now I caught myself three times today saying "Randy" instead of "Jim" when updating our friends about the current situation. Gosh, my head is just such a mess right now.  ::)

I really do appreciate all of your concern. :) I'm going to tell Jim tomorrow that y'all are thinking and praying for us. As soon as I know more, I'll let you know.

mikie
(maybe tomorrow I'll get some time to reset my damn clocks so they quit flashing at me. LOL)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline englishgirl

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Re: spinning wheels
« Reply #15 on: March 06, 2008, 04:44:55 PM »
dont really have anything of wisdom to say dear
just wanted you to know im thinking of you and jim
xxxx
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Offline leatherman

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Re: spinning wheels
« Reply #16 on: March 06, 2008, 06:53:57 PM »
still no news on the western blot. however there was news from the cat scan. Cancerous tumors in the colon, on the liver, and another "mass". Egads! and I was worried that a positive hiv result was going to be the bad news. But that result is still pending, so it still could be a bonus . :o

tomorrow at 11 is the colonoscopy and biosopy (wow, first time typing those words). then we wait to find out if it's bad news, really bad news, or really, really bad news. (i should also mention that I'll be making my trip to the hospital tomorrow during a storm predicted to be 7-12 inches of snow!)
edited to add: his dad died at 42 from a heart attack; and his mom was diagnoses with intestinal cancer during a surgery, and passed away 6 months later at 54

Fouteen years ago I sat beside my lover on his hopsital bed and promised to take care of him throughout whatever (be it death, infirmity, or hopefully recovery). Then I went home and prayed (damn that Baptist upbringing!) that God would at least let my partner live peacefully until his birthday in July.

That was Dec 1993. Randy passed away May 1994, before his 30th birthday on July 9th.

Tonight I'm going to have to make that same promise, come home and pray again, and hope that Jim is still with me on his 53rd birthday on July 29th.

mikie
« Last Edit: March 06, 2008, 10:15:41 PM by leatherman »
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Offline Snowangel

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Re: spinning wheels
« Reply #17 on: March 06, 2008, 07:12:11 PM »
Mikie-
I am so sorry to hear about the cancer.  Good luck tomorrow with the tests and getting into the hospital safely.  I will keep you and Jim in my thoughts and prayers.
Snow
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Offline BT65

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Re: spinning wheels
« Reply #18 on: March 06, 2008, 10:10:30 PM »
Mike, still keeping you two in my thoughts.....
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline leatherman

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Re: spinning wheels
« Reply #19 on: March 07, 2008, 12:42:35 PM »
i got home from the hospital last nite, and finally got around to washing my own clothes (we're about to have a serious snow, and all my thermals are dirty). Just as I was about to start my clothes drying, I got a call from Jim (it was 1130pm). He has gotten very sick (very puke-y) and was crying so hard. I threw some dirty clothes on, shoved some essentials in a bag and headed back, where I spent a miserable night as Jim was not only sick but starting the regimen to clean his system out for the scope.

The orderlies had just got Jim loaded up to go for the colonoscopy, when our ID doc stopped by. He sent everyone out of the room and closed the door. Of course, that is never a good sign. Well, the western blot has come back positive.

I've got 2 or 3 hrs now while Jim will be out from this procedure, so I had to trek home (there's already 2 inches of snow on the roads and nothing had been plowed!) so I can shower, change, get some comfort from my doggies, and pass along the bad news.

Somehow now, I have to find the strength to go back (and it's still snowing!) in just a few short hours and deal with all of this. The doc (doing the procedure today) is supposed to come by late today with a prelim report on the results from the scope. The official biospy results "may" be in by tomorrow.

I'm just so sad right now, I can hardly stand it.

Thank you again for all your thoughts and prayers.

mikie
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chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Ann

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Re: spinning wheels
« Reply #20 on: March 07, 2008, 12:51:35 PM »
Dear Mikie, I'm so sorry you two got this double-whammy of bad news. I've been keeping you both in my thoughts lately and I'll be sending daily - hourly - doses of love, light, strength and healing thoughts both your ways.

Please, remember to take care of yourself though this too.

Hugs,
Ann
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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 BT65

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Re: spinning wheels
« Reply #21 on: March 07, 2008, 01:57:47 PM »
Mike, I am so, so very sorry to hear about this.  I will definitely be keeping you and Jim in my thoughts today and sending some good energy your way.  Please take care of yourself.  Give yourself (and Jim) hugs and kisses (from me).
  Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline leatherman

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Re: spinning wheels
« Reply #22 on: March 07, 2008, 04:02:04 PM »
the doggies are tripping cause they've been alone so much lately; but they just had a blast with me playing out in the backyard in 5 inches of snow. Next I tackled the driveway with the snowblower so I could get the car back out (and find the driveway the next time I come home LOL). Mmmm, the hot Lipton chicken noodle soup got me all warmed back up; though the house is beginning to smell more like wet cocker spaniel now than soup, as the snow is melting out of their fur. LOL

I forgot to take my phone out with me, and missed a call from Jim. Now they're running an ultrasound on him this afternoon. So instead of going right back to the hospital, I'm going to stay at home a little longer. Heaven knows I could use a little bit of "down time".  I'm trying to take care of myself too; but it's tough. I've been eating - not as much as normal; but I'm getting enough. I did get a few hrs of sleep the last few nights, even at the hospital which really amazes me - if you're ever been in one a few nights, you understand. I'm still smoking - but not as much since, by law, I have to go clear out to the car in the parking deck to smoke. Thank goodness I had broken the habit for a while, or I'd be jonesing really bad trapped in Jim's room all night.  ;D I have missed a few doses of meds but part of me really doesn't care. It's only been a few doses and I don't have time to be hanging over a toliet throwing up right now. One way or the other, things will mellow out soon, and I'll get back on track.

I talked with my mom (we talked contingency plans on "what if" - you know I gotta worry, like the surviving partner does in the worst case scenario, about what happens to me next. Gotta keep a roof over our heads and heat for me and the dogs.). Also chatted with my mom-in-law (that's my late partner's mom), of all the people in the world, she understands the most, as it was the loss of her son that she and I shared. Finally I chatted with my Ohio mom (with all this tragedy, I've still been one of the luckiest guys in the world to have THREE moms, and TWO wonderful partners). Since Jim will be out for the ultrasound, and the snow is finally slacking off some, I'm going over to her house for dinner tonite, after which I'm going back to spend another night at the hospital with Jim. I shouldn't be back home to post another update until sometime late Sat. and maybe I'll have some news (good news would be nice) about the colonoscopy results.

I really do appreciate everyone's concern and good thoughts (and the hugs and kisses ;D ). I'm sorry that I've had such bad news to tell all of you; but I'm so glad you've been there to listen (well, read). I started coming to these forums because for the longest time, in my little Ohio city, I felt like the oldest, onliest guy around still living with AIDS. Even though I'm sadded for the reason, I made many new friends here who too had shared in the grief of losing a partner and were still continuing to struggle with this illness.

Although you may not be able to help Jim and I in this situation, just knowing the good thoughts and prayers coming at us from around the world helps to ease a little of this heavy burden off my heart.  :-*

mikie
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chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Queen Tokelove

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Re: spinning wheels
« Reply #23 on: March 07, 2008, 04:56:56 PM »
Mikie---

Damn, baby, I am sorry to hear the bad news in regard to Jim. I was hoping his test wouldn't come back poz but kind of figure it may. But to hear about the other thing just blew my mind. I knew that you guys could make it if he was to come back poz but to be hit with 2 things at the same time is like OMG!!!

Try to remain strong and take care of yourself. And please be safe while driving to the hospital. I will be sending all the good vibes I can you and Jim's way.((((hugz))))))
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
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6/17/09 CD4- 438 VL- 439
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Offline sharkdiver

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Re: spinning wheels
« Reply #24 on: March 07, 2008, 09:25:31 PM »
Dear Mikie and Jim

I am so sorry to hear the news. I am thinking and praying for you both.  I am so glad you have each other. Please take care of yourself Mikie.

Big Giant Hugs,
Sharkie

Offline BT65

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Re: spinning wheels
« Reply #25 on: March 08, 2008, 05:41:57 AM »
Love being sent your way this morning, Mike.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline bear60

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Re: spinning wheels
« Reply #26 on: March 08, 2008, 10:45:54 AM »
I'm really sorry that you had this bad news . I hope your partner comes home soon.
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Offline leatherman

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Re: spinning wheels
« Reply #27 on: March 08, 2008, 12:45:02 PM »
Lordy, it's a freaking blizzard here in Ohio! Even after clearing 6 inches of snow off my drive yesterday, there was a foot of snow on it when I returned this morning from the hospital. Matter of fact the car got stuck just as I entered my driveway. I had to clear out that foot of snow, and my neighbors helped me push my car out of the drift and up into the drive. Then I had to shovel a patch out back because the dogs wouldn't even go out as it was over their heads! I made arrangements with Jim to stay home tonight as the actual blizzard conditions are coming this afternoon. (I can't wait to sleep in my own heated water bed, even if I had to sleep in it alone.)

Unfortunately there were no conclusive results from the colonoscopy. So while they did an EDG scope (through the throat and down) this morning on Jim, I grabbed some breakfast at the McDs downstairs in the hospital. While I was eating, who should I see but MY ID doc! It seems his partner, the one on Jim's case, lives in Akron and couldn't get the 20 miles down the interstate, so my doc came in to take over the cases for the weekend. I must say how much I have appreciated these two docs. They, more than any of the other docs, have kept us informed about what been happening. (my doc told me he knew I had an appt soon as he had seen my results come in yesterday. I teased him about wanting that appt. fee on Thurs rather than bringing my results in with him. LOL I told him I didn't know what to expect, but if they weren't so good, with all this stress I've been under, I wouldn't be surprised. Of course, he countered by asking if I had been taking my meds. Oops! I must have hesitated too long or something, cause I got a glare and was told that we would "discuss" that issue then on thurs. I'm in trouble now. LOL Wait till he hears about me smoking again.)

More importantly though, these two doctors have been the ones who have really helped to keep Jim's hopes up. Although they've been pumping Jim full of IV and pill antibiotics, he's still has a fever. With each non-result, Jim has gotten more depressed (if that's possible) as he approaches a week in the hospital. I'm starting to feel bad too as I told him we just needed the colonoscopy to know what to do; and then just needed this EDG scope to know. Now they are saying it may take exploratory surgery to get answers. Unfortunately, I'm going have to keep telling him to hold up through one more test, until we know how bad things are.

Personally, I was ready to wait for a viral load and some conclusive results about the tumors before worrying about the HIV, but not the "hopeful" ID docs. They started Jim on Atripla yesterday. I was very good and didn't say anything about how much I hate Sustiva, nor did I mention any side effects (even when Jim said he had been having some weird dreams from the time I left the hospital to when I called to say I had made it home through the snow). Maybe we'll get a little bit of luck and the Atripla will do fine for Jim.

The docs are going to do another ultrasound later today. I'm hoping they don't schedule any surgery for today (but if they need to, then the sooner the better). If they do, I'll brave the snow and head back. In the meantime, I'm going to crash on the couch for a while and just watch some of the TV that been recorded (just last week we got the new ATT U-verse service and a DVR). I tackle the driveway again after I get some rest, just in case I do have to go out again. And yes, I'll take my meds tonight with dinner like I'm supposed to.  ;)

hugs back to everyone!
mikie
(who needs to find the thread about the spell check since it doesn't like the words "colonoscopy" or "Sustiva")
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline BT65

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Re: spinning wheels
« Reply #28 on: March 08, 2008, 07:44:33 PM »
Mike, I'm glad the doctor took the initiative to start Jim on Atripla.  Maybe it will work for him, ya never know. 

Keeping you two in my thoughts, baby. :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Assurbanipal

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Re: spinning wheels
« Reply #29 on: March 08, 2008, 09:05:28 PM »
Leatherman

We've not "spoken" but I have been reading your posts and just wanted to reach out to admire your bravery, compassion and love for your partner.  Its good that you are taking care of yourself as well, so that you can be strong now for both of you.

Sending strength . . .

Assurbanipal
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline leatherman

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Re: spinning wheels
« Reply #30 on: March 09, 2008, 07:11:26 PM »
In all, I cleared 20 inches of snow off the driveway. Heading back to the hospital this morning, I was the only car on I-77 and thank goodness cause the roads were still a mess. Although the roads had been plowed, you still couldn't see the asphalt at all. Driving across all that packed snow and ice was very bumpy and probably not good at all for the suspension; but that's a worry for  another day.  ;)

Although Jim isn't much worse (though he keeps getting thinner and weaker each day, and he's still running the fever); he definitely isn't any better, even with all the antibiotics being pumped in. :( The doctors weren't able to determine anything with the EDG scope either.  :( They are trying to run another ultrasound but because of the snow, the nurses have been on a double shift, and most of the staff was simply unable to come in. So, we're really hoping they have the staff to do that procedure tomorrow. Several of the doctors have explained to us that the "mass" in  his belly "may" be close enough that during the ultrasound, they "may" be able to stab it with a long needle and get a sample. One theory is that these spots still might be pockets of infection, while cancer is still the top choice. Either way we might be able to finally get some sort of indication with this kind of test.

I'm doing the best I can to try to keep Jim's spirits up and him agreeable to just "one more test". But it's tough when tomorrow at 1pm, he will have been in the hospital for a whole week without a resolution to the cause of his illness (much less having suffered with this for the previous 4 weeks).

As for me, I'm feeling so-so. I probably did way too much, clearing out that snow, and the meds I took at dinner made me feel real queasy for a couple of hours. (I didn't barf though. WooHoo!) However, I did enjoy a nice night back in my bed even if it was without Jim - at least I had the three dogs with me. After a visit in the hospital for most of the day, I took a few hours to have a wonderful turkey dinner (with all the fixings) at my Ohio mom's. Of course, now I'm back at the house, taking care of the dogs, updating everyone, and packing a bag to stay over at the hospital tonight. I really dread sleeping on that pull-out chair another night, but if we finally get a break, I'm hoping I "need" to be there in the morning when they finally get a conclusive result.

worn-out, drained, emotionally numb, and tired of Winter;
but still hanging in there,  ;)
mikie
leatherman (aka mIkIE)


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Offline BT65

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Re: spinning wheels
« Reply #31 on: March 09, 2008, 07:18:18 PM »
Mike, I think about you and Jim every day.  It's wonderful that he's got you for a partner.

Please take care of yourself.  What do we do at these times, but just go on.....
  Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline lucas clay

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Re: spinning wheels
« Reply #32 on: March 09, 2008, 07:30:37 PM »
"but still hanging in there, 
mikie"


You and Jim keep hanging in there, and ill keep praying for both of you.
 And Stop beating yourself up for Smoking

                                              Lucas

Offline minismom

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Re: spinning wheels
« Reply #33 on: March 09, 2008, 08:30:15 PM »
Oh, my gosh Mikie!  Not sure how I've been missing this thread.  I am so very sorry for you and Jim.  I pray that the docs are able to find what's going on so that you (all) can begin to develope a plan that will get Jim home and healthy.  Prayers and love to you both!

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Offline leatherman

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Re: spinning wheels
« Reply #34 on: March 10, 2008, 11:09:32 AM »
Just a short (sorta LOL) update this time folks, cause with that snowstorm keeping so much of the staff away, not much has happened.

The nurses took pity on us last night and, after giving Jim a sleeping pill at 10p, they actually left us alone for most of the night. Sure they were back in at 430am to take vitals, change IVs and stuff; but I'm sure I slept soundly for about 6 hrs, and Jim got even more sleep because he doesn't remember them coming in and doing any of that. :D Also I'm happy to say that he's been eating some.  :D He's hardly eaten much of anything for nearly 3 weeks, so seeing him eat a grilled cheese sandwich last night and french toast this morning made me feel a little better.

The doctors were by this morning and scheduled the "ultrasound/biopsy" that was put off all weekend for 230pm. Cross your fingers that we can get some results today (at this point, I could care less what they are, we just need to know what Jim's problem is for sure).  So, I'm packing back up (just in case I need to stay at the hospital again; though I'm hoping I can get another night back at home) and heading back to the hospital this afternoon.

Let me say again how much I've appreciated y'all's concern for not only Jim but myself too. Every trip home I find a couple more posts here and another handful of emails in my inbox. Knowing so many people from literally around the world are sending out good thoughts, prayers, vibes and hugs for us sure has helped me struggle with this raging bout of depression and hard times.  :-* :-*

mikie
(who gonna go play with the doggies for a while so they don't think they've been totally abandoned. LOL)
leatherman (aka mIkIE)


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Offline Ann

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Re: spinning wheels
« Reply #35 on: March 10, 2008, 11:20:24 AM »
Hi Mike,

My fingers are crossed. I'd cross my eyes too but I would have a hard time posting. ;)

Hugs,
Ann
xxx
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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 Iggy

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Re: spinning wheels
« Reply #36 on: March 10, 2008, 11:26:57 AM »
Mikie,

I don't know how I missed this thread for so long, but only saw it last night - my apologies.

I am amazed at your strength right now and only wish to express my best thoughts and wishes for you and Jim.

Mark

Offline poz1970

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Re: spinning wheels
« Reply #37 on: March 10, 2008, 05:13:55 PM »
Best of wishes to you and your partner, Leatherman :-)

Re how often should a neg partner get tested in a discordant relationshit.. personally, I've been pressing my partner to get tested every 3 months, even though that week of waiting for results is usually semi-traumatic for me :-(

Big hugs, keep well :-)

J
"The Bible contains 6 admonishments to homosexuals and 362 admonishments to  heterosexuals. That doesn`t mean that God doesn`t love heterosexuals. It`s just that they need more supervision." -- Lynn Lavne

Offline leatherman

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after a week in the hospital
« Reply #38 on: March 10, 2008, 10:49:24 PM »
don't feel bad about missing this thread. I wish I hadn't had to post it and that none of us had to read it - like many other sad threads we've had in these forums over the yrs. Even though it saddens me that any of us are here, I'm just glad there's a site like this where people can understand such problems. I'm sorry if I ramble on in such long posts, but as the saying goes, "Shared joy is a double joy; shared sorrow is half a sorrow". I thank you all for sharing half my sorrow for I'm sure I would drown under the weight of it all.

Still no conclusive results about Jim; but we took a great step forward this afternoon towards finally knowing something.

Thankfully, I got back to the hospital just as transport was about to take him for the ultrasound. By now many of the nurses, doctors, and staff have begun to know us too well after we hit the "week" mark at 1pm today (especially since we were some of the few people in the hospital during the snowstorm throughout the weekend). They allowed me access to the hospital at some odd hours, offered me drink and food, and today let me go with Jim for this procedure. (they also told me, even though Jim had asked them not to, that he hadn't gotten very sick after I left, and lost the breakfast he had eaten.)

I got to watch while they did the ultrasound and actually "saw" part of what's been causing Jim to be sick - a mass about 6 inches long and nearly two inches wide. Yikes! However, they did send me out of room as they did the biopsy. Again they treated me kindly and gave me a chair to sit on in the hall right outside the room, instead of sending me down the hall to the waiting room.

After about 15 mins the doctor came out to speak with me. You know how sometimes you can almost forgot about a bad thing, and then it'll hit you like a mac truck? The doctor wanted to how long Jim had been HIV+ and if there was any special considerations he should know about. Right now I haven't really thought much about that diagnosis because the other issue (the tumors) is of much higher priority.

One day I'm going to have to come to grips with that and the small nagging question in the back of my mind as to whether this (the hiv) is my fault. It's just been Jim and I for the last seven years (he had tested neg beforehand), so I almost have to assume that somehow we fell into that teeny-tiny percent when the safe sex fails. (Isn't that just great fodder for the Am I Infected? crowd ;) ) Maybe a geno/phenotype test will show something to the contrary but until then I'll have to think that somewhere we must have not been careful enough.

A pathologist also was waiting outside in the hallway to test the sample, in case they had to go back in with a larger needle to obtain a bigger sample. Thankfully, the doctor was able to obtain what they called a "very nice" sample with just one needle stick, though it took nearly an hour. The biopsy doc told us it could still take up to 3 days to get the results; while the cancer doc that stopped by when we got back to the room said that he's expecting the results tomorrow night or the next night at the latest.

Tonight I made a decision that I'm sure some of you, along with my doctor, will not agree with. Just as I was finishing up the last few bites of the only dinner I've been able to have at my own home in a week, I could "feel" that norvir gelcap burst. Try as I might, within an hour, I couldn't fight it any longer and spent some time heaving into the toilet. (flush! goodbye dinner and meds) Of course, the phone would ring just then. When I finally felt a little better, I checked and saw it was a call from Jim that I had missed. Crying on the bathroom floor, with the dogs anxiously checking me out, I reached a decision - no more meds for a while. Stuck back in that same old deja vu, just like with the AZT and caring for Randy, I can't afford to be sick and puking from meds while dealing with a deadly sick partner. Trust me, I will tell my doctor when I have my appt on thurs; but unless he has some miracle solution, I just don't know what else to do. I survived 14 yrs ago when this same type of situation happened, and I'm determined I'll survive it again somehow.

After spending tonight at home, I'm sure I'll be back at the hospital most of tomorrow afternoon and night. Unless something unexpected happens, I probably won't post again until after we've gotten results from the biopsy, so you may not hear from me again until wed or thurs.

I have been telling Jim about each and every one of you who have wished us well and he told me to tell you thank you for keeping us in your hearts, thoughts, and prayers.

 :-* mikie
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline komnaes

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Re: spinning wheels
« Reply #39 on: March 10, 2008, 11:20:33 PM »
Hey Mikie,

I don't know what to say. Right now, please take care of yourself and come back soon to us once you're able to.

Hugs, Shaun
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline next2u

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Re: spinning wheels
« Reply #40 on: March 10, 2008, 11:27:32 PM »
wow mikie. no judgement here man, do you what you need to in these tough times. ill keep your partner and you in my thoughts and prayers.

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 Longislander

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Re: spinning wheels
« Reply #41 on: March 10, 2008, 11:39:01 PM »
Mike,

I'd been following along since you started this thread, hoping for the best. I'm so sorry this is all happening.
I'm with Lucas about the smoking thing. I'm not so sure about you stopping meds. When you go to your appt on Thursday, you can make this decision based on the new #'s and hopefully you and your doc can come up with a solution.

You're both in my thoughts.

Paul
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline BT65

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Re: spinning wheels
« Reply #42 on: March 11, 2008, 06:54:42 AM »
Mike, I believe meds are a highly personal decision and no one should judge one way or the other.  In other words, you'll find no judgement here baby.  You do what you gotta do. 

I wish peace and a degree of serenity for you and Jim. 
  Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline leatherman

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Jim had a pretty rough time yesterday. He was having terrible nightmares, and even hallucinating some as he dozed off and on. (more about that later) As the day wore on, his fever keep bouncing higher (finally hit 104), he was hit was some bad diarrhea and vomiting, and eventually started a really harsh cough. By the time American Idol was over he was having chills and the shakes. (I had never experienced that myself until my 9-day "mystery fever" a few years ago) Needless to say, with him that sick, we both were pretty scared. I remember being curled up in the corner of the bathroom crying a couple of times.

Some motrin knocked down the fever, cough syrup helped with his coughing, and the resterol (instead of Ambien) knocked him right out. Although the nurse popped in and spoke with me a few times through the night, everyone was really quite and Jim finally got some decent sleep from 1030p to 730a. I was frustrated though that no report came through about the biopsy results.

I was even more frustrated when Jim's GP stopped by in the morning, and told us that the other doctors didn't believe that they had gotten a big enough sample to determine anything. (Argh! That is NOT what the pathologist said after the biopsy!) His GP seems to be pretty good though and went to track down both the ID doc and the cancer doc to find out what the heck was going on. When she returned, she had gotten some answers for us. The sample was large enough for them to determine that it's some type of lymphoma. They're scheduling a spinal tap soon, an ultrasound of his liver this afternoon, and a bone marrow biopsy on Fri to determine the actual type. They're also going to be putting in a port soon so that can start the chemo. (it sounds like it won't be too long until Jim doesn't have to worry about that bald spot on the back of his head anymore, as his whole head will be bald. LOL)

As to Jim's nightmares/hallucinations, I had a good talk with one of the nurses and was happy to hear that she had read up on Jim's meds. While several nurses believed his nightmares could be from the Ambien, I'm certain it was the Atripla. After discussing the situation with his ID doc (who still didn't have a viral load count), we got Jim taken off that med - and no more nightmares!

At home for part of the morning and afternoon, while I'm washing up some of Jim's clothes, I'm baking some of my Amish Friendship Bread muffins for the nurses who have been such so kind and helpful (lemon/cherry/walnut, orange/cherry/walnut, and chocolate/cherry/walnut). Oh and my picture is on the front page of the local paper this morning! Yesterday, on the way back to the hospital, I had to stop for gas. The paper had a reporter and photographer reporting on the high gas prices - $3.45 a gal! About half a doz friends called this morning, surprised to see me in the news!

If Jim is doing alright later tonight, I'm hoping to sleep at home tonight. I need to spend some time researching about lymphoma. I glanced at GSOgymrat's thread "cancer update" and was heartened to see that his partner is doing well. That gives me back some hope! I won't be getting Jim home for my birthday (friday), and it's going to be really tough for a while; but at least it doesn't look like I'll be having to make funeral arrangements.

mikie
(who will be getting his own blood work results back tomorrow)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline englishgirl

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  • ACT NOW TO CAMPAIGN AGAINST THE TRAVEL BAN
Re: spinning wheels
« Reply #44 on: March 12, 2008, 05:58:16 PM »
dear mikie and jim
i dont really know what to say other than 'hang in there' and to keep sending you lots of love and best wishes
keeping you in my thoughts
xxxx
ACT NOW TO CAMPAIGN AGAINST THE TRAVEL BAN:
http://campaigning.tht.org.uk/cms/cmsloader?WfJVLp&view=11,301,1385,0,-html

http://forums.poz.com/index.php?topic=17352.0


"I'm not keen on the idea of the afterlife - not without knowing who else will be there and what the entertainment will be. Personally I'd rather just take a rest." Oscar Berger, PWA: Looking AIDS in the Face, 1996. RIP.

Offline BT65

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Re: spinning wheels
« Reply #45 on: March 12, 2008, 06:20:17 PM »
Mikie, as always you guys are in my thoughts........
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Queen Tokelove

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  • Smokey the Smurf
Re: spinning wheels
« Reply #46 on: March 12, 2008, 07:01:07 PM »
Well, now look at you, you're a celebrity now besides a great partner!!! You go, boy!!! Stay strong and take care of yourself. I will keep you both in my prayers...
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline leatherman

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Re: spinning wheels
« Reply #47 on: March 13, 2008, 12:52:20 AM »
It seems like I've had nothing but bad news to tell y'all (especially with Jim being so sick last night); but I have, if not good news, at least some nice news to report. Today was a much better day all around.

I was the talk of the floor for not only being pictured in the newspaper (check out the attached pix!); but my muffins were a hit! I'm pretty certain, from the stream of staff stopping by to tell us their favorite flavors, that I guaranteed the staff treating Jim as good as they have been. ;) :D

And they really all have been quite good about caring for my Jim. By now, every one of the floor nurses have been on at least two shifts taking care of him. There are also two aides from another floor who filled in during the snowy weekend, who stop by daily to check on Jim, along with four transporters who have been carting Jim around to his scopes and exams. What can I say? Even sick and deadly scared, we're loveable.  ;D

But the really nice news of the day is that Jim felt much better! Oh, you can still tell that he feels like crap but most of the day his temp was normal and he was more alert and talkative. Several of his doctors also starting floating the idea about Jim being able to come back home "soon" (though I don't think their idea of "soon" is the same as Jim and I's idea of "soon". LOL Unfortunately I could see this continuing for another week or more) We still haven't celebrated Valentine's Day, and I won't have him home for my bday, so we're going to have quite the celebration when I do finally get him back home.  ;D

Tomorrow afternoon about the time I'm going to see my doc (Lordy, I'm starting to dread that!  ::) ), Jim will be having the surgery to have a port installed since he'll be starting chemo soon. That's good to hear too. In the last few days, they've had to move his IV 3 times because it keeps "leaking".

The only dark spot of the day was a little bout of diarrhea and hour long temp of 99.6 that I had this evening. I think it's just me being worn-out. I'm back at home for the night, ate a decent meal, took some tylenol, kicked back and watched Idol and felt 100% better. Now I'm off to a night back in my king sized heated water bed. Ahhhhh!

 ;D mikie

[attachment deleted by admin]
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline BT65

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Re: spinning wheels
« Reply #48 on: March 13, 2008, 07:53:30 AM »
Mike, my dad had a port-a-cath when he was on chemo for colon cancer and it worked out very well.  Much better than getting it slammed all at once. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline leatherman

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Re: spinning wheels
« Reply #49 on: March 13, 2008, 09:18:48 AM »
I understand Betty.  ;) A port is a good thing for Jim to have at this time.

But it's shades of the deja vu again. Randy had a clavical port put in when he was in the hospital for 9 days (Dec 1993) having a blood transfusion to fight his anemia. I don't know if I'm remembering correctly but I believe they used the port to administer Pentamidine to prevent PCP and fight the thrush.

Oh gosh! Randy had an unbelievable case of thrush that they just couldn't get under control at all his last 6 months. It's the scare of thrush that has always sent me running back to the doc those times in the past when I've gone off meds. When I saw it in Jim's mouth a few days before he went into the hospital, I knew we were in big trouble.

One related story because I've always been aghast at how it went down. It was during one of our trips to the hospital (a few months later in May 94) for Randy's pentamidine iv drip that his doctor called the nurse in that dpt. He had her put me on the phone. He told me the latest results showed there was nothing else they could do for Randy, and he asked if I wanted to "admit Randy to the hospital or take him home to die?".

Lovely bedside manner, huh? But I guess I should have expected that kind of rudeness from that drunk, homophobic old man. (that's not slander either. It all came out when, a few yrs later, he was busted for drunk driving and subsequently barred from practicing in the two local hospitals.)

Since during that 9-day stay Randy had made me promise never to admit him again, I took him back home and hospice care came by that afternoon to set up a bed in our living room by the front window. Nine days later, Randy passed away.

As I've said before it's the similarities to 1994 that are disturbing me emotionally about what's happening with Jim. After fourteen years, that old grief of losing Randy keeps bubbling up. I've even accidentally used Randy's name several times when telling our friends about how Jim is doing.  :o I'm just a mess right now.

Well, time for me to go get showered and dressed so I can see Jim for a few hours before he goes to get the port put in and I go visit my doc.

still hanging in there, though really tired  ;)
mikie
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

 


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