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Partner newly diagnosed with HIV and PCP

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Lee82:
So the last 3 weeks have been the toughest time of my life and I'm hoping for some support and advice.

For the last 3 months my partner of 4 years has been increasingly ill. Severe shortness of breath and weight loss resulted in him being admitted to hospital 3 weeks ago. After 4 days he was diagnosed with HIV and the day after he went into intensive care for 3 days as he had developed PCP. I'm told they were 30 mins away from a ventilator. During his time in ICU he was fitted with a mask and given up to 60% oxygen. Incidentally when he was admitted to hospital on day 1 his oxygen saturation was 70%. The mask steadied his sats and for a week after that he was moved to a high dependancy ward where they tried to reduce the amount of oxygen he was on. A few days in he developed severe thrush in his mouth which brought him to tears anytime he tried any food. He was given a new antibiotic to help with the thrush and slowly they reduced his oxygen. 2 days ago he moved onto the normal ward, today he is on 30% oxygen with a 30% flow and the thrush in his mouth is half as bad as it was. Physically he is so weak he can barely sit in a chair for any longer than 2 hours. I'm absolutely heartbroken at seeing him like this, he is the love of my life and it's taking every ounce of my strength not to break down every time I see him.

Has anyone else been in this situation, can people recover from this? His cd4 count was 24, and this has all happened so quickly, I'm trying to read up online about it but it is soul destroying and I need to remain positive for his sake.

Ptrk3:
Lee82:  I'm glad you found these forums. Please make sure you are tested, too, just to make sure of your own HIV status.

In answer to your question, yes, resoundingly, many on these forums have been in your partner's situation and have fully recovered and gone on to live their lives, return to their jobs, and attain health and peace of mind.

I was diagnosed in hospital with PCP and CD4's of nine (Viral Load of 110,000).  My oxygen saturation at the time was similar to your partner's.  I was back at work fulltime in about a month.  Today's medication is miraculous and the so-called Lazarus Effect is quite common: 

https://www.theguardian.com/society/2012/mar/11/aids-a-living-life

It sounds like your partner has already improved markedly, since he no longer is in the Intensive Care Unit, but now on a "regular" floor.  You have every reason to be very hopeful and be optimistic of his full recovery.

Most likely he will be started on antiretroviral medication immediately and some prophylactics to make sure he doesn't get pneumocystis pneumonia (PCP) again (Bactrim or the equivalent) until his CD4's are safely above 200 and azithromycin to guard against the opportunistic infection of Myobacterium-Avium-Complex (MAC) until his CD4's are safely above 100:

http://www.webmd.com/hiv-aids/guide/aids-hiv-opportunistic-infections-mycobacterium-avium-complex#1

It may take a while for his CD4's to recover to a safe threshold (above 200), but the goal now is to get his viral load to an "undetectable" state so his CD4's can begin to recover.

As long as your partner is adherent to his new medical regimen, you and he have long and healthy lives ahead of you.  Best wishes to you both as you begin the journey back to health.

Please use these forums for continued support and tell your partner to feel free to seek the support he may need here, too. 

We all here look forward to updates from you on his continuing progress.

harleymc:
Dear Lee
 I'm sorry your partner is ill.
The really big plus to all this is that, now the HIV can be treated, and also the immediate issues of PCP and thrush are fairly straight-forward to treat.

It sounds like it was touch and go 3 weeks ago. All things being equal the HIV viral load will be suppressed by ART medications and slowly but surely his  cd4 count should rise. As the cd4 count rises his burden of pills will reduce and his health should return.

Keep in touch and keep updating us.
And what Patrick said, get a check up for yourself too.  :)

Hugs

Lee82:
Not really sure where to start with giving an update. So much has happened over the last month.

After around a week on the high dependancy unit, he moved to the regular ward. He was still on optiflow tubes, and they then decided to put him back on nasal canular tubes, reducing his oxygen to around 2-3 litres. His breathing was doing better but his mouth was still red raw and sore from the thrush. So sore that eating anything was bringing him to tears. After around 4-5 days on the ward, he started getting temperatures and he was transferred back to the intensive care unit as they found another bug in his system which they started to treat. He was at best I would say stable at that point, back on optiflow tubes and masks. Then while he was asleep his heartrate went over 200 beats per minute and they gave him an electric shock to restart it. He was also given a feeding tube.

That was around 10 days ago. Since then, they gave him new antibiotics for the new bug and he slowly improved. Last week we found out his viral load went from 240,000 to under 50 and yesterday found out his cd4 levels have went from 10 to 100. Also yesterday they took off all his oxygen requirements and his sats are staying in the 94 and over mark. Physio wise it's slow progress. He is now able to get out of bed and use a walker to do a few steps. They are trying to push him more each day. Sometimes I worry that it's too much, too soon for him. I'm constantly petrified that we will take a backwards step hour by hour. I'm obsessed with his breathing figures.

Tonight they are letting me stay with him in the hospital for Xmas, his sats went down to 92-93 and I put the nasal canular straight on him to get them above 95. That's how constantly worried about him I am. There was talk about letting him come home in the next couple of weeks and I'm not sure how I could cope. He has diarrhoea and soils himself, and even as I sit here now his heartrate is 118 which I think is way too high when you are laid in bed.

He has no family so I feel like there's only me and a few friends he has for support. It's brought us closer together though and I just hope he pulls through. Thanks for all your advice and support, it means a lot. Happy Christmas.

Ptrk3:
Thank you for the update.  I'm sorry to hear that the complications are ongoing, but it does sound like he has "turned the corner" and is improving well (it's been barely a month).  His viral load is, essentially, "undetectable" and his CD4's are rising well.  I continue to believe you have every reason to hope for your partner's full recovery.

I look forward to reading about his continuing progress and for your partner's input on these forums when he is out of hospital.  These forums will provide both of you with emotional support and peer education.

Happy Christmas to you, too, and may 2017 be a year of health and happiness for you both.  Peace.

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