I just realized something today..my roommie is in the end stage

[Roon]

He looks like a skeleton with skin. He didn't look like that over a year ago when he first moved in. He is pooping his pants and cries all day. I ordered some paper work so we can get him some project angel heart. (meals on wheels for PWAs but better). He has had this disease since 1991 and has never taken any medicine for it. He is suffering terribly.

[CaliforniaPeggy]

1. My dear Roon...

Oh, what a dreadful situation...

I wonder why he never got the meds...

Maybe finances, huh?

I am so sorry for what he's going through...

May his suffering cease very soon.

And blessings on you for being there for him at this painful time, sweetie...

:hug:

[Roon]

2. He thinks he's invulnerable

This was the homeless guy that used to crash out at my place. Well one day he just asked me to stay..I agreed. I felt bad for him.He's too sickly to do drugs anymore. We don't have enough food in this house because I get food stamps for one person and he never went down to apply to get his. If it wasn't for the HIV food bank, we would never make it.

I am ordering project angel heart for me and him and hopefully that will be enough to get us through the month.

[moriah]

3. My dad was DXed in 1992.

He's taken meds on and off. Right now he's on the one he has to give himself shots for, Fuzeon, cuz his virus is immune to all the others.

He's still doing pretty well. One of his friends, who was DXed the same year, died recently, he's been really upset about it. He does have accidents, but the fact that he's on Methadone and Percocet for his back (spurs, he's looking to get them operated on once NC's Medicaid program approves the surgery) has helped it a bit. He got a bad kidney infection last year, which is what made him go on the meds again, and he does have PCP, but otherwise he's been pretty healthy.

His t-cells are about 120 now, they'd dropped to 50 before he started the Fuzeon.

I can understand not wanting to take the meds, but is he on Medicaid? Surely he can find a doctor to at least help him not suffer as much...

I truly feel for your roommate, and I feel for you too -- it isn't easy to be there for someone going through this. I'm keeping both of you in my thoughts.

[Roon]

6. Thanks Moria

I started off on AZT years ago when that was all there was and have taken every new med that came down the line. I even tested some meds that were coming out (which is very profitable by the way) I am not at the fuz stage yet. There are still a couple of regiments that I can still take if they need to switch me up.

My T-cell is around 200 and my viral load is undetectable.

Thanks for the kind words.

[moriah]

22. Dad participated in one study...

... but he's been reluctant to do so again.

I'm glad you have a few other things you can try. Since Dad got it from being a needle user, having to shoot himself up is not exactly... uh, conducive to staying clean.

I wish I had some better advice for you and your friend. I'm not sure if, since you indicated he has a drug history, if a doctor would be willing to prescribe opiates for his pain (I'm assuming that's part of the crying issue, if not only depression) but the opiates Dad takes for his back have helped quite a bit for his gastro issues. He started losing weight very rapidly before they started him on them, I think a lot of it had to do with just not being able to absorb food since it went through him so quickly. But I've never understood doctors being afraid to prescribe opiates in terminal cases -- it's not like getting hooked on them is going to hurt your friend any.

It's really hard to advocate for someone who won't advocate for themselves, like you said about the food stamps issue. My dad has never been ashamed of taking the help that's available. That's what it's there for.

All I can do from here is give you guys virtual hugs, keep you in my thoughts, and light a candle if you don't object...

Thank you for helping your friend.

[Roon]

24. No objection to the candle lighting

They won't give him anything for the pain. He was on drugs for so long. Which I think is BULLSHIT!!
My Aunt is an IV drug user and she is very sick too. But she won't get tested for HIV. As long as she can stay amped on coke,she just keeps going.

Bless you and your Father.

[FloridaJudy]

28. That's ridiculous! His having used drugs in the past

Is no excuse for not giving him adequate medication for pain. I'm in a recovery program myself, and nothing will make an addict relapse faster than untreated pain.

I'm old enough to remember when protease inhibitors first came out, and clients we thought were about to die at any minute suddenly started getting better: up to that time we medical folks had to settle for just keeping them from getting sick and dying quite as fast as they would otherwise. I hope your roomie is in that class. I've seen people for whom I was ready to call a priest to give the last rites in the early nineties still walking around and annoying the snot out of their doctors. Maybe if he gets on the right drug cocktail he'll improve dramatically. I've seen it happen.

Are there no more Ryan White funds to care for people like your friend? We got a lot of clients help that way in the past, but I've been out of the Public Health field for a few years. People everywhere are hurting, while we flush billions down the drain in Iraq...don't get me started!

I'll keep your friend in my thoughts.

[Roon]

29. He just needs to call down there and DEMAND it!

When he was tweaking, they wouldn't give him the pain pills unless he dropped a UA every month. He was like fuck that..I would rather be in pain and do my drugs. But now that he is very sickly and doesn't do drugs anymore, they might take another look at him. We will see.

[moriah]

40. I think a lot of it is fear of diversion.

The DEA breathes so hard down doctor's backs, and they would rather make a person suffer than lose their license for fear the person might sell a few to get food.

Also, say the poor guy gets Methadone or something like it, and decides that he's suffered long enough...

Talking with a lot of people who are suffering from HIV, suicide and attempts are common. And to be honest, I can't blame them. The way we found out Dad had been diagnosed was a phone call that he was in the hospital from a suicide attempt - when he got the results he went home and took everything he had, washed it down with bourbon. He's tried several other times, and he has sworn that he will NOT die in a hospital. It was hard for me to cope with for awhile, but now that I'm grown, I've made peace with it. He's in charge of his destiny, it's his decision, and if he chooses that route it will mean that he will not suffer any longer. I'm not going to judge him for it, and when he chooses to go, I will grieve but I will also feel relief that he is no longer in pain.

But a lot of family members aren't "there" yet, and would try to come after the doctor for prescribing such "dangerous drugs" to someone who might use them for long-term relief instead of short-term.

I can kind of understand the doctors, but at the same time I want to slap them for being so cowardly as to deny someone relief from suffering.

[Roon]

42. I know what you mean

My roommate is not suicidal he loves being alive, I think that is why he cries so much. The only reason why I am up so early is because my roomie was in the bathroom making a lot of noise throwing up.

He just needs to get his butt to the doctor and see what his options are.

[NNadir]

33. I worked hard to make Fuzeon cheaper.

There are all sorts of business reasons that it didn't come to pass, but let me tell you, it is a very difficult drug to make. There are literally hundreds of synthetic steps involved. People often deny this, but that has a lot to do with the expense. It's not all about greed.


Last I looked, each kilo manufactured generated tons of waste.


Sigh...

[NNadir]

34. Delete.

[moriah]

41. Fortunately for him, Medicaid pays for it....

... the only gripe I have with it is that he has to inject himself, and handling a needle is difficult for him.

He said if he actually had to try to find a vein, he'd have refused to take it because he would have gone right back to shooting my namesake, meth.

[KitchenWitch]

4. I am sorry.

It is really a good thing that you are there for him.

[Roon]

8. It's kind of scary

When he stops coughing I tiptoe down the stairs to make sure he is OK.He sleeps a lot.

[EFerrari]

5. Dear Roon.

(((((((((((Roon and his roomie))))))))))))))))

[BelleCarolinaPeridot]

7. (((((((((( Roon ))))))))))))

[Roon]

9. Carolina?

I keep trying to respond to you by my posts aren't showing up. But thanks for the BIG HUG!!

[BelleCarolinaPeridot]

10. You are welcome my friend.

When times get hard and you need someone to talk to, CP is here. We all are here. You taught me a lesson today, to just be STRONG.

[MissMillie]

11. you both are in my prayers

:hug:

[Roon]

16. Thanks Miss Millie

[brook]

12. This is so sad.

You're wonderful to have taken him in like this. Have you given any thought to Hospice? They are truly
angels and can help in so many ways. All you would need a doctor's recommendation for it, I think.

[Roon]

17. He would never go.

That's just the way he is. That is why his infection went unchecked. He just hates hospitals and doctor's offices.

[Lars39]

27. If he's in end stages, he needs pain medicine.

He needs to see a doctor to get hospice and to get his pain under control. :hug:

[Roon]

30. He just needs to get his butt back to the clinic

eom

[flvegan]

13. I'm sorry to hear about your friend.

I read your post about how he came to live with you. You're truly a good soul.

[Roon]

18. Thanks flvegan

I have never taken anything like this on before. I guess if he wants to die here, I can handle it. But I am going to need some help once he is totally bedridden. He has medicaid so hopefully we can get a visiting nurse.

[redwitch]

14. Oh Roon.

The poor man! I hope his suffering ends soon. And bless you for being such a wonderful soul!

[Roon]

19. Thanks red

I really appreciate the kind words.

[Shine]

15. Have you looked into hospice support?

Speaking as a volunteer, I encourage you to check them out for additional support. is his family involved, in any way?

My best good wishes to both of you. :hug:

[Roon]

20. The only family he has is his daughter and two brothers

they are spread out across the country. I know how to contact them, just in case.

[Tuesday Afternoon]

31. Dear Roon...

I think you need to go ahead and contact Hospice. Possibly, Pallitive Care if your area has that. But from what little I have read here...you probably need to go straight to Hospice. Just do it. Call them. Get Advice and Get Help. Trust me, they are who you need. :hug:

[hedgehog]

21. People like you are saving this world.

[Roon]

25. Thanks Hedge

eom :hi:

[applegrove]

23. I am so sorry. Vibes to you both.

[Roon]

26. Thanks for the vibes, apple.

eom :hi:

[XemaSab]

32. That's really hard

I hope both of you can stay strong, and I hope he gets some care. :pals:

[Roon]

46. Thanks for the kind words, xemasab eom

[NNadir]

35. It's very sad. I wish you both well.

[Roon]

48. Thanks nadir

eom

[rockymountaindem]

36. Best wishes to both of you

[Roon]

49. THanks Rocky

[GoddessOfGuinness]

37. Hugs for both of you...

:hug::hug::hug:
I'm so very sorry...Sounds like hell.

[Roon]

50. It's rough

For awhile there he would have his good days and his bad days..now it's just ALL bad days.

[BelleCarolinaPeridot]

38. I swear I wish you lived in my city Roon.

You are one of the nicest guys I know and I don't like the fact that you are on assistance for food. OMG I wish I could help you, and its not sympathy. I don't know you but I feel like I just want to hold your hand. Please stay blessed.

[Ellen Forradalom]

39. Or mine.

It is just massively wrong that food should be an issue. Where can I send a prepaid supermarket card?

[Roon]

47. Thanks Carolina

:hug:

[La Lioness Priyanka]

54. agreed. i wish roon lived closer to me too.

[auntAgonist]

43. Roon, I'm really sorry your friend/roomie is going through this

How heartbreaking. :hug: I'm just at a loss for words. I will keep both of you in my thoughts and prayers.

aA
kesha

[Roon]

51. Thanks aunty

:hug:

[VaYallaDawg]

44. Many, many prayers for both of you from me. n/t

[Roon]

52. Thanks dawg

[foxfeet]

45. Sending good energy to you both, my brothers.

I've been poz since before 1985, probably earlier. Still plugging along with undetectable viral load, t-cells around 600. I started in one of the early clinical trials of AZT-- turned out I was in the high-dose group (which I strongly suspected because the stuff made me sick as a dog). Still haven't had to go to protease inhibitors yet. This disease is just plain crazy and unfair (aren't they all). Some people get it; some, with similar behaviors, don't; some respond well to meds, some can't tolerate them. Two of my previous partners have died of AIDS. My current partner of 23 years is still negative and we plan to keep it that way.

I second the suggestion to contact hospice. Your roomie needs help and YOU need help. I don't doubt the strength of your heart, but your body and mind need a break. I'll keep you in my thoughts.

[Roon]

55. Wow fox!

That is great!! Taking AZT was such a pain in the ass. If i remember correctly you had to take it every four hours, even in the middle of the night.

You and I are very lucky.

I know a guy who turned up poz at 16,died at 18. I thought I was a goner. 18 years later, I am still here!

[foxfeet]

60. I'm glad you're still here!

For that matter, I'm glad I'm still here. It's been a long haul and I've had to deal with the side effects from the meds (plus the regular meds I take for being an old fart). Fatigue, diabetes and peripheral neuropathy head the list. But, by God, I'm still here!

Take good care of yourself while doing what you can for your roomie. It sounds like he is making some choices about what care he will or won't accept, so you can only do so much. Keep me posted.

[Roon]

61. Thanks foxfeet

I have other health issues as well,so I know how it is.

I will keep you posted for sure.

[La Lioness Priyanka]

53. he survived 17 years w.out meds? is he on meds now?

[Roon]

No, he is not

he won't get in the habit of taking them. His pills sit right there in the medicine cabinet untouched.

[La Lioness Priyanka]

58. that must be terrible for you to witness. i am very very sorry

its must be like watching a slow suicide.

is there any reason he wont take them?

[Roon]

59. My guess would be

because it's a hassle. Taking my meds for me is a hassle,I admit. But gee, I want to stick around for awhile,see how things turn out.

[BarenakedLady]

56. I'm so sorry.

:hug:

[Roon]

57. Thanks BNL

:hug: