Author Topic: Have you ended up in the hospital due to your HIV/AIDS condition? (Read 6272 times)

cokaine · « **on:** August 21, 2007, 04:53:55 pm »

Being diagnosed with HIV for the past couple of years and trying to educated myself as much as possible at times doesn't give me a clear outlook in what I can expect. No one can predict the future but I know that having HIV the chances of me getting ill quicker is much higher. My question pertains to those who have been living with HIV for more than 5 or 6 years or have and AIDS diagnosis (less than 200 t-cells at one point of their life). Has it been a bumpy journey for you? I've talked to a couple of guys who have been living with the virus over a decade and haven't and then some who have.

EDITED/ ADDING:

I ask this vague question because I am one of many struggling with health insurance. I have no insurance and on Medicaid but no longer qualify and will end up in ADAP. My job offers no insurance and have been advised by a couple of people that I have "time" before needing health insurance that covers hospital, being diagnosed and infected 2 years ago with a VL undetectable CD4 in the upper 400's and on meds. I've also been advised to purchase my own private insurance which will be ALOT of money each month. I also have the option to work a 60 hour weekly job that will cover my insurance but will make my life miserable. The current job I have offers no insurance. So to rephrase my question. When on meds and you numbers are outside the AIDS diagnosis and living with the virus several years is it common to still suffer from AIDS related illnesses and going to the hospital for regular visits or can one who is doing well on meds expect to live a normal life?

Dan J. · « **Reply #1 on:** August 21, 2007, 05:04:23 pm »

I have been in the hospital several times since I was diagnosed with HIV in 1986. My worst year was 2003. I spent a total of 6 months in and out of the hospital due to PCP, the shingles, intestinal parasites. It's an experience I don't want to relive. I was diagnosed with AIDS in Feb 03. I am not going to tell you my #'s.

Matty the Damned · « **Reply #2 on:** August 21, 2007, 05:06:58 pm »

Coke,

I'm not really sure what answers you're looking for here, but here goes.

Yes, I've had HIV longer than 5 or 6 years;
Yes, I've been admitted to hospital because AIDS has made me ill;
Yes, I have an AIDS diagnosis and haven't had a CD4 count high than 200 for a longtime.

MtD

AIDS2HIV · « **Reply #3 on:** August 21, 2007, 05:44:26 pm »

personally, my good days are spent helping others, my bad days are either spent in the bed at home or the hospital...

if you are trying to tell yourself something to expect....tell your self to lower your personal expectations, that way, when/if they dont materialize you wont be so let down.

this disease affects each host differently........no crystal ball...no Miss Cleo*

and do i have aids? yeah, I came into this at deaths door.....13 Tcells and a VL so high the had to try and lower it before they could measure it. Quantity doesnt mean squat.....its all about High Quality*

AustinWesley · « **Reply #4 on:** August 21, 2007, 06:01:31 pm »

Quote from: cokaine on August 21, 2007, 04:53:55 pm

Being diagnosed with HIV for the past couple of years and trying to educated myself as much as possible at times doesn't give me a clear outlook in what I can expect. No one can predict the future but I know that having HIV the chances of me getting ill quicker is much higher. My question pertains to those who have been living with HIV for more than 5 or 6 years or have and AIDS diagnosis (less than 200 t-cells at one point of their life). Has it been a bumpy journey for you? I've talked to a couple of guys who have been living with the virus over a decade and haven't and then some who have.

EDITED/ ADDING:

I ask this vague question because I am one of many struggling with health insurance. I have no insurance and on Medicaid but no longer qualify and will end up in ADAP. My job offers no insurance and have been advised by a couple of people that I have "time" before needing health insurance that covers hospital, being diagnosed and infected 2 years ago with a VL undetectable CD4 in the upper 400's and on meds. I've also been advised to purchase my own private insurance which will be ALOT of money each month. I also have the option to work a 60 hour weekly job that will cover my insurance but will make my life miserable. The current job I have offers no insurance. So to rephrase my question. When on meds and you numbers are outside the AIDS diagnosis and living with the virus several years is it common to still suffer from AIDS related illnesses and going to the hospital for regular visits or can one who is doing well on meds expect to live a normal life?

Hey Coke,

Hmm, well I've had a technical Aids diagnosis, but been positive only a year and a half and never been sick at all other than the seroconversion bit but no hospital. I've only had this virus a relatively short time compared to others and as one person mentioned each is affected differently.

That being said, I see you added a paragraph re: insurance problems. Depending on your situation as far as assets and finances you may qualify for other types of assistance. I'm not sure where you are located, but just recently I learned that there are some programs here in my area for those who are self employed or may have jobs which allow them to qualify as such. A close friend of mine recently got onto this program which covers everything including hospitalization. It's sort of a temporary deal, but then you can renew it quarterly as I understand it.

My best advice would be to ask anyone and everyone at all the ASOs in your area about what programs you may qualify for. Technically, no hospital can refuse you service if you need it, but we all know how that goes.

I had a Hell of a time figuring out what to do to cover my assets and protect my home and I still haven't gotten it all sorted out yet. The majority of people I know who required medical care didn't own a home or car or have assets so it was like no big deal for them to get everything covered through one of the various programs.

What state do you live in? Perhaps there is someone in your location who will be better able to help you find out what programs are available. I was truly surprised at the many options in my area, but the key is to check and recheck with everyone cause often people working at ASO's are not familiar with all the programs.

Best of luck,

Wesley

RapidRod · « **Reply #5 on:** August 21, 2007, 06:40:44 pm »

Been hospitalized twice in the last two years. Once was for six weeks and the last time was for two weeks, because of an OI.

leatherman · « **Reply #6 on:** August 21, 2007, 06:42:57 pm »

Quote

Being diagnosed with HIV for the past couple of years and trying to educated myself as much as possible at times doesn't give me a clear outlook in what I can expect. No one can predict the future but I know that having HIV the chances of me getting ill quicker is much higher. My question pertains to those who have been living with HIV for more than 5 or 6 years or have and AIDS diagnosis (less than 200 t-cells at one point of their life). Has it been a bumpy journey for you? I've talked to a couple of guys who have been living with the virus over a decade and haven't and then some who have.

Thankfully the meds have gotten better through the years, and I've got more compliant with them. I was diagnosed in 92 and worked until I was hospitalized with PCP in 96 and again in 98. By that point, I was quite ill; but with an AIDS diagnosis was eligble for disability. Because of the newer meds, I haven't been back to the hospital in almost 7.5 yrs, and I've actually gotten better even though my t-cells are usually around 200 and never have gone over 300.

Bumpy ride doesn't begin to describe the depression, the illness, and the side effects over the last 13 yrs, or the death of my partner. But, as I said, things are better now. But even that has a strange side effect. Now that I'm better, I'd like to consider working again; but I'm not about to jeopardize getting my meds (when I'm off them, I get very sick), and I still worry about whether I might get sick again.

Unfortunately I can't tell you what to expect. Everyone's body reacts differently to the virus, and to the meds. All I can suggest is to do what I do looking for those same answers about the future - read up on the virus and the meds, and read through the forums here. Not only will that make you better prepared for whatever comes your way; but when the going gets rough you'll find that someone here has been through a similar situation. They might have answers to help out and if not, they'll understand enough to give you a good shoulder to cry on.

whizzer · « **Reply #7 on:** August 21, 2007, 06:48:05 pm »

Hospitalized for a week with IRIS, 3 months after starting meds, 7 months after being diagnosed with HIV.

Oceanbeach · « **Reply #8 on:** August 21, 2007, 08:19:52 pm »

I spent the Summer of 1996 in the AIDS ward of St. Mary's Medical Center (Long Beach) with PCP. A Nurse from that floor came to see me... She said, "I remember you from years of coming here to visit your friends in this hospital and I can guarantee you the same level of quality care, they received while here at St. Mary's."

I went to their ER thinking I had an extreme case of the flu and got the AIDS diagnosis. I was expected to be transported to Harbor General UCLA but, there were no isolation beds available at Harbor General that day. When discharged, I was sent to the Care Ciniic at St. Mary's for HIV/AIDS treatment and the CARE Program at St. Mary's as my ASO. These professionals gave me a reason to continue living and the tools to do it with and... I am not Catholic.

I was not going to the ER that day, I was on my way to Mexico to get antibiotics in a border town. I stopped in a local bar for morning coffee on the way. The bartender sent me to the hospital. I saw the 6 figure bill for treatment that summer and it was paid by Medi-Cal, Medicare. Have the best day
Michael

libvet · « **Reply #9 on:** August 21, 2007, 08:25:29 pm »

Well, I've only been to the hospital once since my AIDS diagnosis (viral load 250,000 and t-cell count at 22) and that was due to an accident, not HIV related. I was pretty much ambulatory the entire time I was going through my first round of tests (I had a mild case of pneumonia, esophageal thrush, and weighed 110lbs). I've never been to the hospital for any AIDS related condition even when I was first diagnosed.

My diagnosis was 7.5 years ago and I've been positive since 1986. This year was the first year I've broken 400 t-cells.

So it really depends on the person. You may do just great and not have to worry too much about hospitalization, but it's always wise to have some kind of plan to deal with that should the need occur.

I concur that you should get in touch with your local ASO and see what you can and can't get. Certainly working yourself into an early grave just to afford health insurance is cruel reality of this fucked up system we have in America when it comes to health care.

J.R.E. · « **Reply #10 on:** August 21, 2007, 09:32:23 pm »

Hi there...

I was only in the hospital once, since I was diagnosed positive in 1985, and that was in 2003, shortly after I received my aids diagnosis, along with that, I had 16 t-cells. That hospital stay lasted 23 hours, and I was released on a Friday evening, and did not budge out of bed again until Monday morning. ( Pneumonia) Yes, It was a very bumpy and uncertain road for me, from October through December of 03.

I think that I am pretty fortunate in that, I have not had a return visit to the hospital, since that time. If I had done things the right way, I probably could have prevented that brief hospital stay in 2003. Live and learn...

The only other time I was in the hospital was in 1973, for a few days , due to a UTI. Knock on wood...

I currently have insurance through my employer, but I do understand your concerns. Loosing, or being unable to perform job duties, and loosing my health insurance,( or not having insurance) is a big issue to me, that I think about often.

Take care-----Ray

Kellyk · « **Reply #11 on:** August 21, 2007, 10:37:46 pm »

Received my diagnosis in the hospital - PCP and Strep pneumonia Initial CD4 count: 6 9 day hospital stay. Two months later another bout of bacterial pneumonia - Almost earned another all expense paid trip to the hospital but the antibiotics wiped it out. ppheeww!

bryonut · « **Reply #12 on:** August 21, 2007, 10:45:37 pm »

Twice within the last year

First:PCP
Second: Pericardial effusion

Lis · « **Reply #13 on:** August 22, 2007, 12:11:59 am »

I was diagnosed when I was 20... Its weird.. I've been poz more then half of my life.... I grew up the sick kid of the family. always the pain in the arse,,, and yet again..... i pissed on my stasis for 18 years... UNTIL>> the big bad wolf called PCP....

a few weeks in hospital, and a trip to the Social Security office perked me right up (not)

MOONLIGHT1114 · « **Reply #14 on:** August 22, 2007, 12:18:27 am »

I probably seroconverted in 92 or 93, diagnosed in Dec 93. Started meds in 95 with a CD4 count of 396. Never had an OI, never been hospitalized. Also, an insulin-dependent diabetic for 26 years now. Counts listed below....

joemutt · « **Reply #15 on:** August 22, 2007, 12:44:03 am »

The day I (probably) seroconverted was tough, an ambulance drove me to the hospital
but I went home after receiving care. (this all happened in a haze, I even forgot my shoes in the ER)
So to answer your question , I ended up in hospital but I didn't stay.

David_CA · « **Reply #16 on:** August 22, 2007, 09:55:28 am »

I was diagnosed in March '06 but had probably been HIV+ for maybe 2-3 years max. I ended up spending a week in the hospital with PCP in Dec '06 with a relatively decent CD4 count. Hubby was diagnosed around the same time, had lower CD4's and viral load, but no PCP. I'm the one who exercises, doesn't smoke, and eats better; I'm also the one who got very sick. Although there is obviously a relationship between CD4's and OI's, it's not always exact. In other words, as others have said, it depends on the person.

David

Peter6836 · « **Reply #17 on:** August 22, 2007, 10:43:41 am »

I have ended up in the hospital the last three years in a row. Intestinal virus, weight loss, all the symptoms that go with it. I loose weight and put it back on. My CD4's are now in the 400's. I have had an AIDS diagnosis. But I keep going I am blessed to have a good family and friends that pull me out of the hospital and care for me at home. I KEEP GOING and plan on doing just that. I have come to the conslusion it just depends on the person. Stress is my enemy.But "working" is also my friend, do not sit around an worry about it each day is a blessing, good or bad.
Peter

jack · « **Reply #18 on:** August 22, 2007, 11:39:17 am »

Do whatever you have to do to get med insurance no matter how many hours you have to work. It will save you a fortune on meds which will keep you out of hospital,but might be more expensive than the hospital.
I have been to hospital three times for side effects from HIV drugs.
Twice for severe stomach pain and once for double frozen shoulder from meds.

AlanBama · « **Reply #19 on:** August 22, 2007, 12:28:08 pm »

too many times to remember...over 40 blood transfusions, everything from sepsis and PCP to bacterial endocarditis and cryptosporidium....I did 14 days in Intensive Care with that one.

I agree with Jack....try to get and keep health insurance, if at all possible.

ubotts · « **Reply #20 on:** August 22, 2007, 02:28:38 pm »

Ive been hiv since 1986...Didn't go on meds till 2002..
My ex lover died of aids and at that time they only medicine out there was azt..
I saw what it did to my lover, so i wasn't going to take meds till something better came along.

One day i felt like i had no energy and had a little rash..so i went to the hiv clinic and was
told my tcells were 27 and viral load was skyhigh...

Then and only then did i go on meds..
Ive been on meds for 5 yrs now..
And no thank god..have never been in the hospital due to any aids related problems..
I also have hep c...Nice combo huh

I did go into the hospital last year in November, i thought i had pcp, but i found out
i had COPD...It stands for congestive obstructive pulmonary disease..
I had asthma real bad,, Got bronchitis alot, and it winded up to be copd...I need to stop
smoking...that's for sure.........But to answer your question..No I have never been in the hospital due to aids related issues....

pozattitude · « **Reply #21 on:** August 22, 2007, 02:34:54 pm »

I ended up in the ER because of a severe allergic reaction to one of the meds I was taking. That was hilarious to me since I've always been completely asymptomatic and there I was in the ER looking like the elephant man not because of HIV, but because of the medice that is suppose to help me.

Rich
(who gets sick at least once a day but refuses to change meds due to his fear of bad allergic reactions to other drugs)

Bucko · « **Reply #22 on:** August 22, 2007, 02:48:22 pm »

I have flatlined twice and been brought back. The first time was a severe allergic reaction to medication when I was 20 (not HIV related), the second time was during a raging bout of bacterial pneumonia (HIV related). My numbers have ranged from really crappy to excellent.

The most important thing is that I am still alive.

Brent
(Who is a survivor)

sdcabincrew74 · « **Reply #23 on:** August 23, 2007, 04:12:54 pm »

Yeap I am HIV positive.

Yeap I have AIDS

Yeap I have been in the hospital three times (twice with PCP and once with IRS).

Yeap I am still alive

Yeap I am scared somedays

Yeap I am thankful that I have good insurance

Yeap, I imagine I will again be in the hospital sometime, but I hope it is not anytime soon.

Yeap, right now my numbers are great and I feel great but I know that can change and that is why I live each day to the fullest.

LatinAlexander · « **Reply #24 on:** August 23, 2007, 04:19:29 pm »

Yes, I landed at the hospital twice. Both because of muscular pain

buca45 · « **Reply #25 on:** August 23, 2007, 04:27:29 pm »

I consider myself fortunate in that after 15+ years positive and never being able to get my T's above 400 (average 275) I have never been hospitalized.
I have had a few minor set backs and tons of side effects from meds, but luckily haven't been admitted once yet.
I attempt to maintain a good strong positive mental outlook and keep myself active (well as much as possible) and with the love and support of a loyal, negative partner of 10 years and the undying affection of a 10 yo golden retriever, I am in a good place now.....well, hard to get out of bed every morning, but other than that........

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Author Topic: Have you ended up in the hospital due to your HIV/AIDS condition? (Read 6272 times)

Dan J.