My dad has AIDS

[runnergal]

Hi everyone,  What a wonderful forum you have here.  I took my very stubborn 67 year old father to the hospital about 1 month ago.  He had been in declining health for about two years,  weight loss of over 40 lbs,  shingles,  and bouts of pneumonia.  I had been in contact with his PCP who had "no idea what was wrong with my dad".  I had wondered about  HIV,  but my dad is not what I would consider a high risk factor, and was told his blood work was normal,  and I assumd it included an HIV test.  Anyway,  it took alot of convincing but I finally got my dad to the ER room at the  hospital,  where in less than four hours they told me a screening test came back HIV +.   I was heartbroken,  more tests revealed he was in his end stage of AIDS,  and has lesions on his liver,  possibly mestatic disease caused by lymphoma.    His initial biopsy came back "undetermined",  and then the second biopsy was "unconfirmed",  but the pathogist think it is not tumour (thank god).   Anyway he is very frail (127 pounds, 5' 10"),  but his HIV doc started him on Altripla this Tuesday.  What can we expect for recovery?   He is also suffering from a little AIDS-induced dimentia.  Another big worry is how to get him to eat,  so any suggestions would be very much appreciated.  His viral load is >500000,  and his CD4 count 51.  As I mentioned he is very wasted.

[Matty the Damned]

Hey Runner,

Grim news about your dad. I won't sugar coat this, it sounds as though he is very ill.  There is good news, however. HAART can be extremely effective for those with late stage AIDS which most likely what's happening here.

Atripla is a very potent medication and it can reverse the effects of AIDS Dementia Complex. His liver issues may complicate things, but there are strategies for managing that.

What can you expect for recovery? It's hard to say. Your dad is terribly ill, but with today's HAART options, there is hope. It will be slow and it's more than likely he will always be pretty frail.

This is going to be difficult for your father, but also for you. I'm glad you found us.

MtD

[squaw]

Runnergal,

So sorry to hear about your father.  My son was just diagnosed a few months ago.  Atripla is awesome medication.  My son has been on it for one month and already his VL has gone from 54,000 down to 550.  My son has virtually no side effects from the medication.  Don't lose hope for you dad.  I've been doing tons of reading about HIV/AIDS and your dad can recover.  Some members on this website have been in equally or worse health and have bounced back.  I am in nursing school and have worked with people who have no appetite.  Have you tried Ensure drinks.  They are kind of expensive, but very nutritious and calorie filled.  They come in a variety of flavors.  Alot of times people who don't want to eat will drink.  I wish you and your father the best.  If you ever want to talk, I'm here.

Take care,
Squaw

[runnergal]

Thanks Matty and Sqaw,  I took my dad to the doc today and he said the biospy revealed no cancer - good news,  but wants me to follow up with the GI specialist to make sure they did a CT biopsy.  My dad's dementia is alot less after only three days on Atripla,  so I have great hopes, he has eaten a little more the last few days.   I will keep you all updated on his progress,  Sqaw I am sending healing vibes to your son as well,  what a great mom he has.

[Miss Philicia]

runnergal, I had wasting years ago and while Ensure is easiest to find there are other options that pack a heftier amount of protein.  Go to a supplement store that bodybuilders use and get something like EAS Myoplex.  Isopure has even more grams of protein, I think 50 per serving but it's not as tasty as Myoplex.  If you add in fresh fruits, and mix with whole milk in a blender it's like a milkshake.  I would often have two of these a day in addition to making myself eat as full a meals as I could do.

[Hellraiser]

Well your dad is pretty bad off, but my numbers were worse and I'm still kicking around.  At this point it's just a game of wait and see.  As long as the medication works though there is a "Lazarus Effect" that it can and does produce regularly in people who are extremely sick.  With me I was noticeably better in a month's time and within 3 months was almost good as new, however the deeper reaching effects of the strain his immune system has been through may take a lot longer to heal.  Please keep us informed as the situation progresses.

[newt]

Hello

Sorry about the bad news.

HIV-related dementia-type conditions are mainly caused by the immune system trying to do its job, and sending many, many white blood cells to the brain. These, unfortunately, are toxic to the brain in large quantities. Tis the same as the can't think! feeling you get when you have flu. The Atripla will shut down the HIV virus and allow your dad's immune system to stop annoying his brain. I expect this could intitially be quite a speedy process. Atripla is truly an orange bomb of a medicine.

The prospects for a decent recovery are reasonable, if not quite certain.

Good luck

- matt

[sisterr]

Sad about your news... and Strength to you runnergal...

my brother was recently diagnosed and had worse numbers than your dad, and was really sick...so they had to sort out the other stuff first before he could start treatment. we're not even two weeks into the meds and he is looking much better. he had some pretty hairy side effects, but not anything he didn't get through. and there may be more - but the meds are definitely working for him! we're not out of the woods - but the trees have thinned considerably!

i'd also recommend those drinks, the EAS and the Ensure and whatever else is out there. keep him eating and hydrating (and don't forget you have to feed and water yourself too). and keep perusing these forums. the stuff is explained better here by people than the inserts typeset in 4pt.

[Miss Philicia]

I definitely think, aside of course from popping the HIV meds daily in a timely manner, that regaining weight has to be a huge concerted effort.  In addition to what I previously suggested, I'd probably also get a referral from his HIV specialist to see a nutritionist who can help monitor what's going on for the next 12 months, and this should be a nutritionist that has dealt with HIV wasting issues.  Any recovery like this is really complicated by losing so much weight, and as I had wasting in two separate instances I'll just say it really takes commitment to regain the weight.  Actually the HIV specialist should have insisted on sending him to one already, IMO.  As your father is having cognitive issues it would be prudent that you go with him to the nutritionist -- are you actually living with him and doing the cooking or is he living on his own?

[runnergal]

h

I definitely think, aside of course from popping the HIV meds daily in a timely manner, that regaining weight has to be a huge concerted effort.  In addition to what I previously suggested, I'd probably also get a referral from his HIV specialist to see a nutritionist who can help monitor what's going on for the next 12 months, and this should be a nutritionist that has dealt with HIV wasting issues.  Any recovery like this is really complicated by losing so much weight, and as I had wasting in two separate instances I'll just say it really takes commitment to regain the weight.  Actually the HIV specialist should have insisted on sending him to one already, IMO.  As your father is having cognitive issues it would be prudent that you go with him to the nutritionist -- are you actually living with him and doing the cooking or is he living on his own?

                                                                                                                                       I am staying with him for the next few weeks, and then he will likely come to live at my house,   right now I am cooking,  telling him when to take his meds,  in short he wouldn't be surviving without me.  I really hope he turns around.  He does seem more alert and himself the last few days.

[mikejh]

Hi
Sorry to hear about your dad, I were in a similar situation in 2006 were hospitalized with kidney failure, blood cloths in my lungs high VL and 37 T-cells spent almost 3 months in the hospital, left with me-pron and Atripla and 6 months later my T-cells were much better and my VL down, today I'm OK on disability but still kicking and are able to enjoy life
mike

[RichardfromIndy]

Hello Runnergal,  I can't add to anything that has already been stated other than I wish you and your Father success with the Atripla and the protein drinks.  Other than those two things the most important thing for him is that he has the support of you to help him through this.  It is very important, as I am sure you know by now, to keep him hydrated and forcing the protein supplements into him.  My fondest hope is that as he improves his mental faculties will return and he can be better able to understand what he needs to do to ensure that he is getting better.  My prayers are with him, and with you.

[drewm]

 

[Miss Philicia]

runnergal's father passed away seven months ago and her account on the forums has been inactive since that time.