An on-going thread

[Jeff G]

I was settling in for the evening when I got a call from the hospital that my aunt who had surgery to clean the plaque out of her neck artery was now on life support . Its not looking good for her so I will be in and out of here for next few days . I am going back the hospital to sit with her tonight as I do not want he to be alone .

[BT65]

You're such a good person, Jeff. Your aunt doesn't know how lucky she is to have you.

[weasel]

     Jeff ,
             I'm sending a prayer for you and your Aunt .
     Hoping all goes well .

                                     Carl

[J.R.E.]

I had another urine test done  ( 11/19/14)  at the VA clinic. I didn't have my cell phone with me today, but a nurse called me back ( I missed the call-and got the message),   and wants me to call the clinic tomorrow.

So,...  I  will call tomorrow, and find out what's going on.  Doctors and staff , don't usually call from the VA, so something might be going on, OR, They could say the results of the urinalysis was "Normal", and no further action is necessary.


Will give a follow up as I find out more tomorrow !


Ray

Just to give a follow up,...  I called the VA clinic this morning, and "EVERYTHING" was A-OK with the urine sample I supplied on Wednesday. No RBC in the urine !!



Ray

[Buckmark]

Ray -- So happy that your urine test turned out well, and showed no red blood cells.  I had a bit of a scare with my urologist who found them in my urine a few months ago.  Then we realized that it because of my blood thinners.  I was tapering off Coumadin for an upcoming procedure, switching to Lovenox daily, and had my portacath flushed with heparin.  The Lovenox and Heparin were both within 2-3 hours of my urine test.  Duh!

Jeff -- I am so sorry to hear about your aunt.  I am glad you can go and be with her!    Prayers on the way for both of you.

[Wade]

Great news Ray !

Jeff , you have some tough days ahead , my heart goes out.

            Wade

[mitch777]

Geez Jeff, you sure are making the hospital rounds a lot lately. Such a good nephew!

My thoughts are with you and your Aunt.

[Jeff G]

The situation with my aunt was very bleak and I was certain she was not going to make and the doctors where doubtful as well . Around 2 this afternoon I was sitting by her in ICU and she woke up and reached for my hands and two hours later they removed her breathing tubes and we were laughing and joking around, it really was miraculous .

I will be up there at the hospital tomorrow afternoon and all night with her … she is pretty beat up from the chest compressions and the CPR and needs help and support . All and all  I am a happy man …. very tired but happy .

[Wade]

That's great news  !!!   NOW.. you need some rest...
Glad for the VERY HAPPY ending !!!

[BT65]

Great news,comrade. Please get some rest!  I'm here if you need me.

[Wade]

Got my lab results today , still UD , T Cells still in upper 400s , have stayed there for years . got lipids earlier this week on portal site ,  Cholesterol 138 ,
triglycerides 90
glucose 86 ,  the rest all good too  !!   Will be moving into our new house in about
two  weeks , Can't wait . Not far away , just one dirt road over  ! LOL , love the neighborhood .

Floors are being sanded and stained starting today ,the rest is just tying up small stuff . Know where I'll be turning 60 ....God willing and the creek don't rise !
Won't gush anymore tonight !

[BT65]

Good news on the labs!  I'm very impressed with the cholesterol and triglycerides.
Also, congrats on the new house, how exciting!

Betty

[Wade]

Thanks Betty,
I don't know why my lipids are so low ?
I eat what I want , on meds that usually raise numbers.
prezista ,norvir,isentress,and truvada ,vitamin D supplements
that finally went back into range. oh made a mistake , triglycerides are 110
were 90 last labs , hard time remembering all those numbers !

also take valcyclovir as a preventative,I got a herpe on my eye ball
about ten years ago,
went blind ,and eventually got a cornea transplant. But that's another story.
Take my 325 mg bayer aspirin also. Who knows  ??

You take care of your leg, so you can get your knees done. You seem to have a high tolerance for pain , and  would probably do great.
They want you up and walking right away. So your back in action in no time !
You Be Well,Wade

[Miss Philicia]

I finally slept over eight hours last night with my new CPAP machine. I was using the wrong nasal attachment size for the last 2 1/2 weeks. They didn't tell me that they were different sizes in the packet.

#majfail

[Jeff G]

That's great news Miss P . I still have been putting off a sleep study and need to do one .

[Miss Philicia]

That's great news Miss P . I still have been putting off a sleep study and need to do one .

Since you've been on opioids long term you really need to go have one done.

[mitch777]

Wade, sounds good! I only wish I had your cholesterol levels.

David, happy to hear the larger size was available.

Betty, just wondering if you have seen your outdoor cat at all.


Me? Well I've been rapidly loosing energy the past two months. I'll give it til January and if there is no improvement I might consider going back to Isentress. Sleeping better but much more tired all day long. Maybe it's the Ativan but I only started taking that about 3 weeks ago. Maybe seasonal disorder or just getting older... or simply too many combinations.

Would rather have insomnia and have more energy. Frustrating!

Anyway, Happy Thanksgiving everyone!

Pillow time.

[aztecan]

Hi gang,

Jeff, I am glad to hear your aunt is doing much better!

David, I didn't know there were different sizes, either.

Wade, I envy your lipids, a lot.

I have been somewhat absent recently, although checked in to read now and then.
My CEO decided I needed help, with work that is. So, she asked me to proceed with creating a new office in Gallup.
I hand-picked the case manager there. He is an old friend who was a case manager for another agency that went belly up. He is a wonderful asset both because of his experience and his ability to speak Navajo, which I have tried and failed to learn.
So, I had to arrange for him to travel to Albuquerque to be interviewed by everyone. Then, my boss called and insisted I be there as well.
So, did that and all went well.
Last week we spent much of the time searching out a location for the new office. We found what I think will be a good location. I managed to haggle a little bit with the landlord and I think we got a good deal.
Then went shopping - retail therapy of sorts. So far, I have bought two new desks, file cabinets and other things.
So, things are moving forward.
I can't remember if I mentioned my new job title? If I did, just bear with with.
I am not the northwest regional supervisor for my agency. I still have my clients, but I may transfer some over to the new guy. We'll see.
So, hope all of you are doing well. Just a quickie update.

HUGS,

Mark

[Wade]

hey Mitch,
I'm on isentress too ,
I sleep well also , but am always tired .
that's one of my biggest complaints... Fatigue

[mitch777]

hey Mitch,
I'm on isentress too ,
I sleep well also , but am always tired .
that's one of my biggest complaints... Fatigue

Hey Wade,

I'm not currently on Isentress. I switched to Intelence and that's when the fatigue got worse. Sleeping better now. Go figure.

Betty,
Thanks for the chat today. Talking to a friend makes my day every time! 

Mark and Jeff,
I give you guys BIG credit in quitting a life long habit. It's on my to do list but I'm just not ready with all of what is going on in my life.

Dermatologist appointment today and eye doc tomorrow. Geez, I need to get cooking!!

[Wade]

Oh ...OK ,
No rhyme or reason  !
everybody's  body reacts differently
I have no energy , seems to come in spells'
 ( or so I call them , I am from the south ya know )

Happy Thanksgiving to you too !

[wolfter]

It's going to take me a while to read through all the posts and I hope you all know how much I care about you all.  I've been freakishly busy and life is such a whirlwind at the moment. 

I managed to weather the nasty storms we had today and still made it to the OSU med center.  I'll update all I learned about my weak ass bones later.  I learned a lot and really liked the doctors (yeah I said it plural).   

I'm having a TG dinner here.  I got tired of family chaos and indecision and simply stated my plans without offending anyone I hope.  so now it has grown and I'm preping like hell. 

Greg is taking a half day Wednesday so he can come early and help with the last day details.  He tickles the shit out me when he asks questions that simply require a huge laugh.  We're still in a bit of a mindset of our youth, but when he asked if it would be weird with him staying?  If they snoop and find our videos and toys, that's their bad.

hugs all while I go snooping around

[wolfter]

Well I finally started kicking this illness in the ass.  For a week and a half I've had some sort of chest infection going on that almost sent me to the ER.  Greg was insistent that we should go but I think he still frets about any sniffle I have. 

Greg and I are progressing nicely.  I think we both thought it would simply be a matter of picking up where we left off.  WRONG.  2 decades of life experiences changes people and we quickly discovered that.  But fortunately, we have better communication and are working through things correctly. 

We're leaving next Saturday for Hilton Head for a week long vacation.  Hoping people can chime in on some fun things to do in a typically older resort area.  His parents own the vacation condo so the price is right.    It was cute the way they asked us if we could do them a favor and spend our vacation there to look after the place.  Since they're older, they don't get there too often these days.  So I'm to do any maintenance that might be needed and Greg is to do a thorough cleaning.

Then 6 days of fun and sun.

[BT65]

Greg,  there must be some nasty bug going around, my sister has been pretty ill for the past week and 1/2.  It's a pretty aggressive bug.  I'm glad you will be spending some time in a warmer climate for awhile.

[Miss Philicia]

We're leaving next Saturday for Hilton Head for a week long vacation.  Hoping people can chime in on some fun things to do in a typically older resort area. 

Make day trips to Savannah (less than an hour away) and Charleston (2 hours). Both have great restaurant scenes, Savannah is more "arty" probably while Charleston has more money. You'll want to research and find specific "Lowcountry" cuisine restaurants as that is different than the broader "Southern" food. It's more similar to food in New Orleans.

Beaufort is even closer by and the second oldest settlement in SC, so there are nice historic buildings.

Anyway, aren't you flying into Savannah? You could always do that city before heading to Hilton Head or maybe do it on the return trip instead of making an extra day trip.

[Miss Philicia]

so some updates on MOI:

My pain doctor had to cancel my neurostimulator implant surgery, which was a partial implant for the 7-day trial session, originally scheduled for Dec. 8th due to a family emergency, and there wasn't another opening to do it until Jan 26th. I told him that was too long to wait considering I've been seeing him since the end of August and have had zero progress with anything. Even longer if one considers that both my podiatrist and neurologist were trying pain med issues since Spring 2013.

So he decided to go ahead and skip to starting methadone treatment for pain, and says if that doesn't provide enough relief we can do the neurostimulator later as an adjunct therapy instead of raising my dosing too much with methadone, mostly because I think having sleep apnea (even though it's now being resolved with a CPAP) can be risky in terms of respiratory arrest.

But at least I will, hopefully, get some partial relief before going home for Christmas. Pain was so bad at Thanksgiving that on the car trip back I could not drive for more than one hour.

CPAP use is better though still not where I'd like it to be, but part of that is because I had to go off Celebrex due to reflux issues now my arthritis issues have gotten so much worse. I wake up most mornings with horrible back/shoulder/neck pain. I guess basically I just have pain everywhere now, either from worsening neuropathy or worsening arthritis. Oh, and I also read somewhere that long-term untreated sleep apnea (which I had) can cause and/or exasperate neuropathy, so perhaps mine is multi-factorial (meaning also from meds I took in the 90's as well as HIV itself). On top of that using opioids for neuropathy treatment can make my apnea worse, so it's kind of a clusterfuck.

My dentist also cancelled two appointments in a row back in October and November so I've yet to have my final crown put in my mouth -- I've had a temporary in there now for 3 months. That will finally be fixed tomorrow, followed by a cleaning the next week. Then I still have one more cavity to have fixed in January, though by then I am sure they will find more.

Otherwise I'm picture perfect with my HIV: 1677 cd4 count/56% -- amazing how worthless that is.

[J.R.E.]

 ugh,....

I have my Colonoscopy consultation tomorrow morning at 9:30 @ Bay Pines. Will probably get my appointment set up tomorrow, on that visit. I am hoping this can be done in March, but we"ll see what they come up with.

I have some labs ordered by my ID doctor for December 10th, and hopefully that will be it until the follow up consult on January 29th.

Otherwise, all is as well as it can be !


Ray

[mitch777]

On top of that using opioids for neuropathy treatment can make my apnea worse, so it's kind of a clusterfuck.

That just sucks. In fact your whole post is disheartening.

Otherwise I'm picture perfect with my HIV: 1677 cd4 count/56% -- amazing how worthless that is.

pretty on paper isn't it? ha!

Sorry you are dealing with so much pain David. Be careful if you decide the opiates are your only option.

[Miss Philicia]

Be careful if you decide the opiates are your only option.

If you mean double-dipping to get high no, I am not worried about doing that. If I did that it would mean having to go days with nothing, or worse having withdrawal. It will be all strictly by the book.

Plus by the time I see my sleep apnea doctor in mid-January I will have been on methadone for one month and he'll be able to see what, if anything, it's doing to that issue compared to the month I've now done without any pain meds.

[Buckmark]

On top of that using opioids for neuropathy treatment can make my apnea worse, so it's kind of a clusterfuck.

That about sums it up, regrettably.  Sorry you are going to have to resort to opiods, I know it's a last resort.  Pain management doctors have a lot of tools in their arsenal, but a solution to neuropathic pain is still very elusive.

Otherwise I'm picture perfect with my HIV: 1677 cd4 count/56% -- amazing how worthless that is.

Can I borrow some of your CD4s, please?

[aztecan]

Damn, David. I see pain management issues pretty often, but none compare to what you've been going through.

I hope the methadone works for you. Be careful with your gut. Opiods have a way of stopping up the works, so to speak.

HUGS,

Mark

[Miss Philicia]

Be careful with your gut. Opiods have a way of stopping up the works, so to speak.

HUGS,

Mark

I'm not to worried about that. I have to take 12mg of loperamide daily plus 6 capsules of Creon (pancreatic digestive enzymes) every day for control of severe diarrhea. I'll probably just be able to cut those out and have regular bowel movements even on opioids. We'll see.

[BT65]

David, good luck with the Methadone.  I've taken it twice in the past for pain.  Just don't run out, Methadone withdrawals are no joke. 

I hope it works for you and gets the pain under control, or at least knocks most of it out.   

Betty

[wolfter]

You guys' stories with neuropathy make me grateful that this is one thing I've avoided.  It sounds horrendous.  David, I truly hope you get some relief from this. 

[wolfter]

Anyway, aren't you flying into Savannah? You could always do that city before heading to Hilton Head or maybe do it on the return trip instead of making an extra day trip.

Goodness no, we couldn't afford to fly so we're driving.  (he is)    He already knows I fall asleep immediately when riding so it'll be a quick trip for me.  He packs as heavily as I do so the checked baggage cost for both of us for a week long trip when be cost prohibitive.  We had the trunk full just for a 3 day West Virginia trip a couple of weeks ago.

We're sitting down this evening to do a quassi agenda.  He's spontaneous as hell and I'm rigid in planning so we have to compromise.  I like structure and he likes the freedom to do whatever.  And we're trying to make dinner plans with a couple of my AM buddies since we'll be going right through their areas.

Other than that, I've still not gotten over this nasty chest shit.  I've known several people around here who have had it.  2 of them ended up with pnuemonia.  EEK.  Been there done that too many times during the AIDSY days and hope I avoid that.  It appears to get better then BAM! 

[leatherman]

And we're trying to make dinner plans with a couple of my AM buddies since we'll be going right through their areas.

I'm excited as hell to see you again!! It's been too long since Seattle. I've really got to try to get back up to Canton this Spring and will have to include time to swing over and visit y'all.

I'll get to meet the other Greg too - and see if he is deserving of you LOL

but, for heaven's sake, get better soon! and don't bring your aidsy pneumonia down to me  I don't have time to have teh aids again LOL

[AlanBama]

It's nice catching up on all of you, and our respective journeys with AIDS.  Hope everyone manages to have a nice holiday season. My cancer ordeal has pretty much killed Christmas for us; we'll see how it goes. 

Miss P, sorry about your pain issues.  I've been on CPAP since 2009, and it has helped me so much.  My partner is on it also.  It's a traveling road show if we go somewhere; just going to Birmingham yesterday we had to take the feeding tube, pain meds, and all related paraphernalia.  It is not an easy thing to fall asleep with something strapped to your face (think "Alien").

I found out yesterday that I most likely will not be able to eat "real" food for at least 6 months. Talk about a downer! They took 35 lymph nodes from my neck ; the cancer was not encapsulated in several of them. So they're pushing me to prepare for radiation.   Lord, grant me the strength to deal with this, without driving my partner, family, and friends crazy; plus I'm still trying to hold down my little job;  it pays the rent and car payment!

Much love going out to you all --  ALAN

[Miss Philicia]

I found out yesterday that I most likely will not be able to eat "real" food for at least 6 months. Talk about a downer! They took 35 lymph nodes from my neck ; the cancer was not encapsulated in several of them. So they're pushing me to prepare for radiation.   Lord, grant me the strength to deal with this, without driving my partner, family, and friends crazy; plus I'm still trying to hold down my little job;  it pays the rent and car payment!

The food issue, I'm sure, will drive you insane. Hopefully 2015 will be better for both of us (well, and others in this thread dealing with adversity -- this year has been unkind to so many hasn't it?)

[Miss Philicia]

btw, as some of you may remember at the beginning of the year my liver numbers were so out of range that I had to go get an ultrasound at the hospital, and they remained elevated with my April and July tests but decreasing each time slightly. Magically as of my October tests both the AST and ALT number were within range, and not just by a hair either. One was 5 under normal and the other was 9 under acceptable. We'll see how that goes along but it's not like I've made any changes with what goes into my body during that period. The last time both numbers were within range was 2 years ago.

But at least a tad bit of good news to share.

[mitch777]

Oh my! So much to catch up on here.

@Alan, first comes a big hug. I can't believe you are working through all of this with such a positive attitude. My memory sucks but aren't you on disability and if not wouldn't it be a good idea at this point? I hate to suggest how others go forward (but I do at times,lol) but you need to get the weight off of your shoulders of finances if it's at all possible. I'm certain that your partner, family and friends will be with you without hesitation but I understand your concern. I feel the same way often. Hang in and go forward the best you can sweetie.

@ David, I did not mean to imply the double dipping thingy. Just was concerned about the opiates. Thanks for the update and good news about your liver #'s. Yay!

@ Greg, Get over that bug soon!! I remember going through something similar. It seems to get better and then Wham! Back again. A chicken soup infusion will hopefully knock it out before your trip. Have fun!!

Update on myself...

Went to the pain clinic this afternoon. First time since my cervical injections. They tried to push an appointment at my first meeting (2 months ago) to consult with a neurosurgeon. I said no at that point. "how about if we just get through these injections first!" is what I said.

So today it was the same push. I felt that it was a bit of a factory but I conceded to at least meet. He tends to book up far in advance which is fine with me. Hopefully no sooner than February and I told them as much. Ha!

Physical therapy has helped me in the past but they closed the nearest one to me last year. I simply do not have the energy to drive 30 minutes each way several times a week for a temporary solution and I told them so.

I can't remember if I ever mentioned this online but I have been dealing with a wart problem on my left hand for over 1 1/2 years. Nothing seems to be helping but I'm going to start a new thread. My immune system according to my ID doc seems to have developed holes even with a decent (850ish CD4 count and an UD VL).

It makes me wonder by his description if those holes are there when it comes to my cognitive issues too.

32 years a guinea pig and the years go by. *sigh*

Geez, that was a long post!

[Wade]

Alan ...... A Very Special Holiday Wish for YOU  !!!
You are one of the bravest people I know !!
I hope and wish with all my heart you will taste Christmas dinner
Maybe not for a while.....But March is a Good time for a special Dinner !!!

Keep up that Wonderful attitude ...
Who ever that is that smiles on us ,
I Know Will Be Watching Over You !

Be Well , My Friend...   Wade

 

[wolfter]

After some trial and error, I think I was actually suffering from severe allergies.  I've always blocked all heat ducts in my bedroom and somehow that elluded me when I put down the new floors.  The register vent was right beside the bed and I think I've been breathing in dust all night long.

A few days ago, I blocked the vent and it seems to have worked.  So a combination of the room being too warm and breathing dust appears to have been the culprit.  I was wondering why the only issue I had was breathing and nothing else.

[aztecan]

A bit of an update.

I had to schedule a visit with the doctor. I had described some problems and he decided I needed a full once-over.

There may a problem with my stomach or small intestine. So, I am being referred to a gastrointestinal specialist for an endoscopy.

Seems I may have an ulcer. I guess we'll see once they scope me.
He (the doctor) already broached the subject of making a few changes.

I take 40 mgs of Protonix, which the doctor said should have already taken care of any ulcer issues. That is why he was concerned, because I have had this problem now while taking the proton pump inhibitor.

The doctor hinted I may have to stop taking the Naproxen I take for joint pain. I take 750mgs a day.The down side to that is I am not aware of something to replace it, meaning I might have to go without pain control. That isn't something I relish.

I may have to drop the niacin I take to help boost my HDL cholesterol as well. That won't make me sad. I have been flushing a lot lately for some reason.

I know this year has been tough for a number of us. My issues pale in comparison to many of them.

But there are times when I just want to say "enough" and go out for a hot fudge sundae.

HUGS,

Mark

[Jeff G]

Hi Mark . I was suffering the same and had an ulcer although I was on a proton pump inhibitor. The cause was H pylori and after a course of meds I was much better, I'm certain you doc will look to see if you have H pylori as its the culprit for ulcers many of the times .

I got into tummy distress when I had a pinched nerve in my neck and had to take over the counter meds ... the effects of goody powder and the H pylori really made a mess of my stomach but all is well now . Please let us know how you make out on your testing .

[Miss Philicia]

Mark, in similar fashion I had to halt Celebrex (same class of med as Naproxen but supposedly more GI friendly) due to recurring nocturnal reflux issues. I take chondroitin/glucosamine from the vitamin shop now, per doctor's suggestion, and it does help some but perhaps only half as well.

I still wake up every morning with bad back/neck pain though.

[mitch777]

Mark,

Gut issues are amongst my worse nightmares. I've had issues but always pretty temporary. Hope all of these changes works out for you!

m.

[BT65]

Mark, sorry about your tummy problems.  I take Protonix also and know how strong it is, I hope it's nothing serious!

What are you going to do about your pain?  Maybe something like Toradol?  It's a very mild pain killer,doesn't effect judgement etc.  I just know how pain is, and you certainly don't need to put up with it. 

Please let us know how you're doing.  If you were here... I know a really good local frozen custard place that has wonderful sundaes!

[wolfter]

Wishing you well Mark.  It does seem overwhelming at times, but we all push on. 

[Miss Philicia]

My year of dental work is finally finished -- 12 visits down (root canal, two crowns, two cleanings and maybe a filling), next one isn't until June for routine cleaning. Finally a break. I also had 4 appointments in 2013 and 4 in 2012.

At least I still have all of my original teeth -- none yanked.

I'll have to do a final tally of all medical appointments in a couple of weeks to close out the year. I'm sure you're all on the edge of your seats. (not)

[Jeff G]

My year of dental work is finally finished -- 12 visits down (root canal, two crowns, two cleanings and maybe a filling), next one isn't until June for routine cleaning. Finally a break. I also had 4 appointments in 2013 and 4 in 2012.

At least I still have all of my original teeth -- none yanked.

I'll have to do a final tally of all medical appointments in a couple of weeks to close out the year. I'm sure you're all on the edge of your seats. (not)

You certainly have had a rough go of it in the last couple of years . My doctor informed me today that I had to stop putting off a sleep study … so I may be c-pap bound like you soon .