Welcome, Guest. Please login or register.
December 06, 2019, 05:02:35 am

Login with username, password and session length


Members
Stats
  • Total Posts: 749915
  • Total Topics: 63000
  • Online Today: 468
  • Online Ever: 4912
  • (November 13, 2019, 02:56:14 am)
Users Online
Users: 3
Guests: 418
Total: 421

Welcome


Welcome to the POZ Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Partner newly diagnosed with HIV and PCP  (Read 13963 times)

0 Members and 1 Guest are viewing this topic.

Offline Lee82

  • Member
  • Posts: 20
Partner newly diagnosed with HIV and PCP
« on: December 02, 2016, 07:04:24 pm »
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.

Offline Ptrk3

  • Global Moderator
  • Member
  • Posts: 2,715
Re: Partner newly diagnosed with HIV and PCP
« Reply #1 on: December 02, 2016, 07:39:06 pm »
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.

HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline harleymc

  • Member
  • Posts: 1,293
Re: Partner newly diagnosed with HIV and PCP
« Reply #2 on: December 08, 2016, 12:22:57 am »
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

Offline Lee82

  • Member
  • Posts: 20
Re: Partner newly diagnosed with HIV and PCP
« Reply #3 on: December 24, 2016, 05:23:16 pm »
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.

Offline Ptrk3

  • Global Moderator
  • Member
  • Posts: 2,715
Re: Partner newly diagnosed with HIV and PCP
« Reply #4 on: December 24, 2016, 05:34:33 pm »
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.

HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline Tonny2

  • Member
  • Posts: 2,258
Re: Partner newly diagnosed with HIV and PCP
« Reply #5 on: December 24, 2016, 11:12:56 pm »


            OJO       HELLO....I'M GLAD YOU ARE THERE FOR HIM, YOU MUST LOVE HIM A LOT...IT SEEMS HE IS HAVING ALL THESE PROBLEMS DUE TO HIS AIDS STATUS, BUT, ACCORDING TO YOUR POST, THE TREATMENT IS WORKING, HOPEFULLY, HE WILL START TO GET BETTER...THAT OTHER BUG, YOU KNOW WHAT IT IS?...I WAS DIAGNOSED WITH PCP, CD4-20, TWENTY YEARS AGO, HOPEFULLY HE WILL RECOVER SOON...I THINK HE IS WHERE HE IS SUPPOSED TO BE, DOCTORS KNOW WHAT IS BEST FOR HIM, HE NEED TO START MAKING THOSE LUNG TO  START WORKING AGAIN...MERRY CHRISTMAS FOR YOU AND YOUR PARTNER...REMEMBER TO GET TESTED FOR HIV, IT'S BETTER TO KNOW IF YOU HAVE IT,, SO YOU TREAT IT BEFORE YOU END UP IN YOUR PARTNER'S SITUATION, HOPING FOR YOU TO BE HIV NEGATIVE       SANTA'S HUGS FOR BOTH OF YOU, HANG IN THERE                                    OJO

Offline 2tcells

  • Member
  • Posts: 257
Re: Partner newly diagnosed with HIV and PCP
« Reply #6 on: December 28, 2016, 10:12:54 pm »
good luck to the both of you I hope he gets better soon! sitting in a hospital bed almost unable to move and soiling yourself brings back some memories for me, that was about 3.5 years ago. I was in there on the 4th of july with aids, pcp, thrush ect. cd4 2, vl 220k. so its possible to fully recover and I hope he gets better soon!
7-4-13 diagnosed   cd4- 2      vl-220,600
8-3-13                     cd4- 4      vl- 448
9-3-13                     cd4- 40    vl- ud
11-3-13                   cd4- 54    vl-ud
1-9-14                     cd4- 62    vl- 43
4-3-14                     cd4- 110  vl-ud
8-5-14                     cd4- 95    vl-ud
9-23-14                   cd4- 97    vl-ud
1-22-15                   cd4- 156  vl-ud
4-14-15                   cd4- 122  vl-ud
6-12-15                   cd4- 148  vl-?
8-15-15 start stribild
9-3-15                     cd4- 152 vl-ud
11-25-15                  cd4- 211 vl-20
2-17-16                   cd-4 194 vl-ud
4-1-16 start genvoya
5-10-16                   cd-4 220 vl-ud
9-19-16                   cd-4 182 vl-ud
12-2016                  cd-4  267!vl-ud
2018 cd4 187 switching meds

Offline Lee82

  • Member
  • Posts: 20
Re: Partner newly diagnosed with HIV and PCP
« Reply #7 on: December 29, 2016, 05:14:04 am »
2tcells - you have no idea how happy your post makes me. Well done on your recovery, it's amazing.

Quick update, he has an appetite again! I'm bringing in all kinds of foods for him
and he is eating much much better (well 3 weeks ago he wasn't eating anything at all). They weighed him yesterday and he is 64kg (10st) so hoping weight will go on again now.

They've ramped up the physio with him and he is now able to get up out of bed by himself and walk to the toilet in his private room and back. He used a walker yesterday to get himself to the toilet and walked back to bed himself. Also he went to the toilet yesterday for the first time in weeks.

He is still breathing by himself, his sats yesterday were better than mine which we laughed about. His heartrate is still a concern though, around 108-110 resting in bed, is this normal with the antibiotics he is on (cotrimoxilide). They have reduced his feeding tube calories from 2000 to 500 overnight now he is eating.

His tongue still has thrush but nowhere near as bad as before, it's more towards to back of his tongue now, and the rest is clear.

I'm a natural worrier though and all the talk of him potentially coming home in a couple of weeks petrifies me right now to be honest.

Thanks for all your support xx

Offline Wade

  • Global Moderator
  • Member
  • Posts: 3,447
Re: Partner newly diagnosed with HIV and PCP
« Reply #8 on: December 29, 2016, 08:45:15 am »
Hi Lee, Sorry I haven't posted sooner and glad to hear things are going better.
I was in the same shape in June of 1995, in ICU with oxygen going in every hole they could put it in. I had a Bactrim IV , but no feeding tube.

My second day in a doctor came into my room with a clip board and a form for me to sign, it was for a respirator. They couldn't get my oxygen level out of the 60s and was told my organs would start shutting down and I would not make it through the night.  I refused it, and obviously woke the next day.

After 2 weeks with round the clock respiratory TX, blood gas tests twice a day and the rest of the mess I was released from the hospital. I thrived once I was home and in my own environment, at first just making it to the mail box and back made me turn blue, but I recovered quickly.

My partner was still able to work and I went back in November, we were in danger of loosing our home. 1996 along came the PIs and here we are , celebrated our 30th this past month. Bottom line the more he does the better he will feel, least that was the case for me. He is on treatment and you both have a bright future ahead of you.

He still has some hurdles ahead but the worst is over, and he will be fine. I know this has been mentioned by Patrick already , but please get your self tested if you have not already.

Best Wishes for the New Year, Wade
« Last Edit: December 29, 2016, 08:48:06 am by Wade »
HIV 101 - Basics
 HIV 101
 You can read more about Transmission and Risks here:
 HIV Transmission and Risks
 You can read more about Testing here:
 HIV Testing
 You can read more about Treatment-as-Prevention (TasP) here:
 HIV TasP
 You can read more about HIV prevention here:
 HIV prevention
 You can read more about PEP and PrEP here
 PEP and PrEP

Offline DANIELtakashi

  • Member
  • Posts: 845
Re: Partner newly diagnosed with HIV and PCP
« Reply #9 on: December 29, 2016, 09:02:27 am »
Lee,

Here is another one that was down with PCP three years ago.
My CD 4  was at 60.   Now l am back at work although l still feel worried about how long l will survive but l am here anyway now.
Japanese National.
Language:  Japanese and English
Reside in TOKYO
Have visited 45 US states, DC, and Guam and Saipan.
Wishing to visit American Samoa someday.

Offline Tonny2

  • Member
  • Posts: 2,258
Re: Partner newly diagnosed with HIV and PCP
« Reply #10 on: December 29, 2016, 07:28:14 pm »


        ojo        HELLO, THANKS FOR THE UPDATE...IT SEEMS HE IS ON HIS WAY TO A SPEEDY RECOVERY, NO, YOU DO NOT WANT HIM BACK HOME NOW, FOLLOW THE DOCTORS ORDERS AND BE PATIENT, HE WILL BE HOME FOR YOU...AGAIN, WE ARE CONCERNED ABOUT YOU, WE DON'T WANT YOUR PARTNER LATER ON TELLING US YOUR STORY IN THE HOSPITAL, GO AND GET TESTED...BEST OF LUCK...HUGS  OJO

Offline 2tcells

  • Member
  • Posts: 257
Re: Partner newly diagnosed with HIV and PCP
« Reply #11 on: December 29, 2016, 10:52:11 pm »
im glad his appetite is better that's a good sign when I first got out of the hospital I was still in bad shape and taking 16 pills a day which was like a entire meal. sounds like he will recover but like other have said please get tested so you are not in the same spot next year! its easy to be health with the meds when your poz if you don't get sick first.
7-4-13 diagnosed   cd4- 2      vl-220,600
8-3-13                     cd4- 4      vl- 448
9-3-13                     cd4- 40    vl- ud
11-3-13                   cd4- 54    vl-ud
1-9-14                     cd4- 62    vl- 43
4-3-14                     cd4- 110  vl-ud
8-5-14                     cd4- 95    vl-ud
9-23-14                   cd4- 97    vl-ud
1-22-15                   cd4- 156  vl-ud
4-14-15                   cd4- 122  vl-ud
6-12-15                   cd4- 148  vl-?
8-15-15 start stribild
9-3-15                     cd4- 152 vl-ud
11-25-15                  cd4- 211 vl-20
2-17-16                   cd-4 194 vl-ud
4-1-16 start genvoya
5-10-16                   cd-4 220 vl-ud
9-19-16                   cd-4 182 vl-ud
12-2016                  cd-4  267!vl-ud
2018 cd4 187 switching meds

Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 34,126
Re: Partner newly diagnosed with HIV and PCP
« Reply #12 on: December 30, 2016, 08:56:34 am »
Hi Lee,

It's so good to see that things seem to be heading in a much happier direction.  So many times I have seen when the meds kick in and the resurrection is just amazing, beyond what you could imagine.

Make sure you are taking good care of yourself as well.

Here's wishing you guys a happier New Year!

Best,

Andy
Andy Velez

Offline Lee82

  • Member
  • Posts: 20
Re: Partner newly diagnosed with HIV and PCP
« Reply #13 on: January 02, 2017, 09:01:00 pm »
Hi everyone, thanks for all your comments and support.

It's nearly 2am and I still can't sleep so thought would update you all. He is doing well breathing-wise, oxygen saturation levels are above 95, he gained another kg at the last weigh in (weighing him every 3 days). They have completely removed his feeding tube. He is now able to get out of bed himself and go to the toilet, but the physios seem to be never there.

They are looking at sending him home on Thursday and I don't know if it's too soon. We live in a first floor apartment and he has only managed 3 steps so far in hospital. I am struggling to adjust to the changes and don't know what is expected of me in terms of physically supporting him when he gets home. We have no adjustable bed, nothing to take blood tests or oxygen levels. I remember before he went in to hospital how bad he was sleeping so am dreading it. Since he started taking haart he is covered in Kaposi sarcoma which the doctors hope will fade in time, but it's a constant visual reminder of what's happened.

In himself he feels much better and is desperate to come home, so I feel bad talking to him about my fears for him leaving hospital. I know it sounds crazy, but the calmest I have felt throughout all of this was when he was in intensive care and I knew someone was with him 24/7. I will have to work during the day so don't know how he will cope by himself while I'm not there. Like I said in an earlier post, he has no family so I feel incredibly responsible for looking after him.

I just have to remind myself that 7 weeks ago they were 30 mins away from a ventilator and we have come so far since then. So hopefully in another 7 weeks there will be more improvement.

Offline Ptrk3

  • Global Moderator
  • Member
  • Posts: 2,715
Re: Partner newly diagnosed with HIV and PCP
« Reply #14 on: January 02, 2017, 10:19:18 pm »
It's great to know that your partner is continuing his upward swing of improvement.
He is well on the mend now, and know that they would not let him out of hospital until he is well out of the woods.  His improvement will continue exponentially now, rest assured of that.  In seven weeks, he will be pretty much back to normal is my bet.

Thanks for the update and Happy New Year to you both!
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline Lee82

  • Member
  • Posts: 20
Re: Partner newly diagnosed with HIV and PCP
« Reply #15 on: January 03, 2017, 02:38:06 pm »
Thanks Ptrk3.

He had a stomach pain today and was sick in the morning, feels fine now. They've given him a beta blocker to get his heart rate down and it's now in the 90s which is much better. Had a good chat with the doctor today and the plan is keep him on the septrin until his cd4 levels get over 200.

They also tested me today for HIV/hepatitis and all came back negative.

Offline Ptrk3

  • Global Moderator
  • Member
  • Posts: 2,715
Re: Partner newly diagnosed with HIV and PCP
« Reply #16 on: January 03, 2017, 03:17:08 pm »
Glad to hear that you tested negative for HIV/HEP :)

Yes, the established protocol is to keep with the Septrin/Bactrim until the CD4 count is safely above 200 (usually, this means a couple of counts above 200, so maybe depending on the time interval between counts three to six months after the first 200 count).

Good luck with continuing progress.
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline harleymc

  • Member
  • Posts: 1,293
Re: Partner newly diagnosed with HIV and PCP
« Reply #17 on: January 03, 2017, 10:31:25 pm »
Glad your mate is doing so well. His cd4 counts are nearly up to my counts. There's only been one occasion that I've been hospitalised in the past 5 years and that was for a common old street assault.

Congratulations on your multiple neg test results :)

Offline Tonny2

  • Member
  • Posts: 2,258
Re: Partner newly diagnosed with HIV and PCP
« Reply #18 on: January 04, 2017, 04:44:25 pm »


         ojo     HELLO LEE, I'M GLAD YOUR TEST RESULTS CAME BACK NEGATIVE...HAPPY TO HEAR YOUR PARTNER IS DOING BETTER...HUGS          OJO

Offline kinko

  • Member
  • Posts: 4
Re: Partner newly diagnosed with HIV and PCP
« Reply #19 on: January 05, 2017, 01:43:35 am »
Hey guy, I'm so happy about your partner's recovery

I hope you both all of the best and an amazing 2k17. Bye and keep us informed =)

Offline harleymc

  • Member
  • Posts: 1,293
Re: Partner newly diagnosed with HIV and PCP
« Reply #20 on: January 07, 2017, 12:11:07 am »
Hi Lee now that things are stabilizing, I thought is was time to start looking at your worries about the future and how to manage.

Blood tests: you are not going to have to do blood tests at home. If your partner is well enough to travel home, he's well enough to attend a doctor as an out patient.

He will be discharged while needing a special bed, that was only ever done in the days (the 1980s and first half of the 1990s) when people were being discharged to return home to die. Your man will be sent home because he is well enough. Equipment such as comodes  or crutches can be hired from hospitals, you don't have to buy support equipment.

I don't know where you live so this next bit is theoretical....

Many local municipalities have home care services, these can range from nursing staff, to people who drop over with a meal or to do housework. These are often minimal cost or free. Talk to any HIV service organisation in your locality, or any disabilities support group or your local council.

These support workers can ease the fears around showering, physio, worry while you are working and your own exhaustion levels. At most you'll probably only need these services for the first month or so.

Have a great 2017

Offline Lee82

  • Member
  • Posts: 20
Re: Partner newly diagnosed with HIV and PCP
« Reply #21 on: January 07, 2017, 10:54:24 am »
Hi everyone. He came home on Thursday evening, we live in a first floor apartment so was worried about how he would get up the stairs but in the end, the 2 paramedics carried him.

Luckily our place is small so there's not much walking to do. We have been given a raised toilet seat which he can get out of fine. The bed and sofa are a struggle but he can just about manage it himself. Other than that, it's just food, drink and medication. I'm giving him his HIV meds first thing with breakfast, and his septrin at 6pm. We are also using Nystan for his oral thrush which is healing well now.

I got a shock when he took off his shirt the other night as his Kaposi Sarcoma is all over his chest. It's also really bad on the soles of his feet but we have a specialist appointment coming up.

Breathing is now much improved, this is the positive that I'm taking at the moment, when I think back 6/7 weeks ago how he couldn't breathe without a huge amount of oxygen, it's amazing that he can breathe on his own now.

We have a carer coming round every morning to help dress and wash him while I'm at work. Apparently they can't wash his hair due to health and safety - how ridiculous is that! Also the physio are coming round tomorrow to assess him, we have the toilet seat, a walking frame and a stick at the moment. Hoping we can get a perching still to sit in front of the bathroom sink and wash, as well as something to get in the bath to take a shower.

Obviously he's tired a lot but sleeping much better at home than in the hospital.

Emotionally he is doing much much better than me. There were tears when he came home from both of us, but I'm finding it really hard to manage how much things have changed. He used to look after me, and now it's roles reversed. I emailed the Terrence Higgins Trust about a workshop for families dealing with HIV, but the first meeting is late March-early April so it's ages away. Keep looking for something in Central London for partners but can't see much.

That's about it for now. Will, as ever, keep you updated. To be honest this forum is my only outlet at the moment so thanks everyone.

Offline Wade

  • Global Moderator
  • Member
  • Posts: 3,447
Re: Partner newly diagnosed with HIV and PCP
« Reply #22 on: January 07, 2017, 11:28:05 am »
Welcome home !!!
He is on the mend and will continue to get better every day, his sat level is at 95 , which is great. The more he is up and moving around the better off he will be. I am sorry to hear about his KS, but that can be taken care of these day as well.
Very happy to hear your tests came back negative :)

You are very lucky to have each other !

Wishing you both the best, Wade
HIV 101 - Basics
 HIV 101
 You can read more about Transmission and Risks here:
 HIV Transmission and Risks
 You can read more about Testing here:
 HIV Testing
 You can read more about Treatment-as-Prevention (TasP) here:
 HIV TasP
 You can read more about HIV prevention here:
 HIV prevention
 You can read more about PEP and PrEP here
 PEP and PrEP

Offline Ptrk3

  • Global Moderator
  • Member
  • Posts: 2,715
Re: Partner newly diagnosed with HIV and PCP
« Reply #23 on: January 07, 2017, 12:03:01 pm »
Glad you are both back home, a very good sign that your partner is well on the mend. 

I'm also glad you are using this forum for continuing emotional support as you continue your journey.  Do keep us informed.
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline CaveyUK

  • Global Moderator
  • Member
  • Posts: 1,635
Re: Partner newly diagnosed with HIV and PCP
« Reply #24 on: January 07, 2017, 12:11:25 pm »
Pleased to hear that he is home and improving. It has been a stressful time for you too, so make sure you take some time for yourself in amongst all this. Your partner is clearly on the road to recovery, so that should take a load off.

The emergence of KS following starting of ART is probably IRIS (Immune reconstitution Inflammatory Syndrome) which can trigger certain latent things when the immune system recovers. Whilst it is a shock, it at least shows that his immune system is working again and should resolve before too long (either on it's own or with treatment).

Hang in there, and do keep us updated.
HIV - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here:
PEP and PrEP

Offline harleymc

  • Member
  • Posts: 1,293
Re: Partner newly diagnosed with HIV and PCP
« Reply #25 on: January 07, 2017, 04:50:23 pm »
Dear Lee,
Glad he's home, and glad that you are getting support and the equipment you need.

KS is not really nice to look at and certainly not nice to be walking on.
I had KS so I can give you  an anecdotal story about this. Ultimately treatment decisions will be for your fella and the doctors. But here's my 2 cents...

If there is no KS on the lungs, brain or in the gut then there is no great urgency to treat KS with chemo (wrecks the immune system further) or radiation.

When I started on medications there was a two- three week period where I was getting more lesions, but after that no new ones. Then over a period of about a year, they started reducing in size and fading. Within a year they were faint and had gone from 40 down to about 8.  Within 3 years even I couldn't tell where the worst of them were, absolutely no scarring. BTW my cd4 count is 140, nadir or 10 just as a comparison.

But KS can sometimes occur in people with higher cd4 counts, up to about 500. With some people it doesn't resolve nicely on the other hand KS treatments are pretty hard core.

I think your doctors might play a little 'wait and see game' to see if they start resolving spontaneously. If they are causing issues for walking, they may treat the problem ones but leave the others alone.

There is hope with KS.

HUGS



Offline Tonny2

  • Member
  • Posts: 2,258
Re: Partner newly diagnosed with HIV and PCP
« Reply #26 on: January 08, 2017, 08:36:09 pm »


         ojo        hello lee82...i'm sending you a big bear hug, you need it...i know how you are feeling, but now, it's just fair, you take care of him, be strong, he will be there for you as soon as he get better and things will go back to normal, just hang in there...sorry about the sk, i have not experience with it, but let's think positevely and let's see what the specialist says...we are here for you, i thank you for keeping us posted and feel free if you want to rant or vent, it will make you feel better to get your feeling out of your chest, march-april is too long...more cyber hugs                      ojo

Offline Lee82

  • Member
  • Posts: 20
Re: Partner newly diagnosed with HIV and PCP
« Reply #27 on: January 10, 2017, 06:13:49 pm »
Hi everyone.

He's been home now for 6 nights. I've been back at work for a couple of days now. Our routine is waking up around 07.30 for breakfast and HIV medication, then I prepare his food and drink and leave it on a side table next to the sofa. I leave for work around 08.30 and the carer usually comes around 09.30. He can get himself up out of bed now and let her in. She will help wash and dress him. He then spends the day in the living room watching tv, sleeping, relaxing, whilst getting up to go to the toilet if he needs to or a little walk around the flat.

When I get home we have a walk around the flat again and do some stairs, he can now do 2 steps by himself and we have set ourselves a target of 5 by the weekend.

We have a follow up appointment with our doctor next Tuesday, I'm expecting they will take more blood tests to see if his cd4 count has improved, and on Friday next week we have a meeting with a specialist to look at his Kaposi sarcoma, I've looked online and this guy looks to be one of the best in the business so happy about that.

I can see his mobility is getting better slowly but surely. He is eating small portions but regular ones. Things seem to be slowly improving, so not sure why I'm breaking down in front of him every night?? We had a rational discussion about it today and I think it's because the last time he started getting better in hospital, he took a backwards step, so now things seem to be getting better again, I'm finding it hard to think positively all the time. Anyway, I'm trying not to over-analyse every single detail at the moment, so will leave it there. Thanks for your continued support. You guys are amazing. Xx

Offline CaveyUK

  • Global Moderator
  • Member
  • Posts: 1,635
Re: Partner newly diagnosed with HIV and PCP
« Reply #28 on: January 10, 2017, 06:53:42 pm »
hang in there. It will get gradually better, even if you have little setbacks along the way. Before you know it, he will be fighting fit - but it may take some time so have patience and try and be as strong as you can possibly be throughout it.

It sounds like you are doing a great supporting role already so keep a positive attitude and keep us posted
HIV - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here:
PEP and PrEP

Offline Lee82

  • Member
  • Posts: 20
Re: Partner newly diagnosed with HIV and PCP
« Reply #29 on: January 23, 2017, 05:51:40 pm »
Hi everyone, it's been a couple of weeks so thought an update would be good for me to write down.

We went to the hospital last week to see a Professor who has got him starting on chemotherapy this Friday. His body is covered in Kaposi sarcoma, but specifically his feet. We have been doing physio every day but it's on the soles of his feet so they get really really sore after some walking. They called it 'chemo-lite', he will have it once every 2 weeks intravenously for an hour, I'm told the side effects are minimal??

I have so many emotions about him starting chemo, on the one hand he is in pain with his feet and  they think it will be the best way to treat it. On the other hand, the KS seems so insignificant compared to the PCP he is still getting over. I'm worried it will wreck his immune system and we will be back where we started. His appetite is great right now and he has gained 10kg since since his lowest weight in December. He had some more blood tests last week so hoping for a fresh cd4 count in a few days-a month ago it was 100.

Some close friends of ours know the truth, but all I told my parents was that he has pneumonia. They visited regularly and were a great support, but now in their minds, he's gone from getting over pneumonia to having skin cancer and they don't understand it. I would love to be honest with them but not sure if they could handle the truth.

Personally I'm exhausted right now. Feel like I've been on high alert for 4 months and have had barely any downtime, met up with one of my best friends for a drink after work last week and felt so so guilty for leaving him by himself for a couple of extra hours.

Offline Tonny2

  • Member
  • Posts: 2,258
Re: Partner newly diagnosed with HIV and PCP
« Reply #30 on: January 28, 2017, 07:22:34 pm »


          ojo       HELLO LEE...BIG BEAR HUG ON YOUR WAY, YOU NEED IT      ojo

Offline Almost2late

  • Member
  • Posts: 1,150
Re: Partner newly diagnosed with HIV and PCP
« Reply #31 on: January 28, 2017, 08:37:51 pm »
Hi Lee, sorry to hear of the situation with your partner.. really, really, sorry..

I was dx'ed 3 yrs ago with PCP and KS but clearly not as severe.. wishing you and him the very best recovery, stay strong.
"Hang on to your hopes my friend..
thats an easy thing to say,
but if your hope should pass away,
simply pretend that you could build them again"...

Offline Lee82

  • Member
  • Posts: 20
Re: Partner newly diagnosed with HIV and PCP
« Reply #32 on: January 29, 2017, 10:54:13 am »
Thanks folks.

We had the chemo on Friday and so far he hasn't really experienced any side effects, just tiredness which is expected after what he's been through over the past few months.

We've started walking outside now, just up the road and back, probably for about 15 mins but good to see him getting out and not stuck in the flat again.

We got the results of his last cd4 count - went up from 100 to 200 in a month so Truvada/Tivicay is obviously working. Been told not to expect such a rise now he has started chemo which is expected I guess.

Offline Ptrk3

  • Global Moderator
  • Member
  • Posts: 2,715
Re: Partner newly diagnosed with HIV and PCP
« Reply #33 on: January 29, 2017, 12:28:58 pm »
I'm glad to read of your partner's ongoing progress.  Every day, things are getting a little better for you both.  It's great to read that he is starting to get outside again.  Think how much better he will be when the Spring weather comes!
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline Lee82

  • Member
  • Posts: 20
Re: Partner newly diagnosed with HIV and PCP
« Reply #34 on: February 20, 2017, 04:23:12 am »
Hi everyone, it's been a while so thought it was time again for an update.

He is doing well. It's strange to even type that sentence but it's true. My parents came to visit this weekend and were amazed at how he is doing compared to when he was in hospital. The weather in London has been great lately so we went for a 45 min walk on Friday. No walking stick, only really breathing deeply going uphill which is to be expected. He's gone up from 58kg in December to 71kg now (I've learnt to cook lol!).

He has now had 2 chemo sessions for the KS, and hasn't really had any side effects at all. The main area around his feet seems to be getting better, it's hard for me to tell as I see him everyday, but he says the pain isn't there when he is walking which it was last month. He still has a lot of visible lesions though, so it's kind of a visual reminder of what's happening and we both hate it.

He's going to start working from home in 2 weeks time, his general HIV doctor doesn't want to see him again until Mid April which i was surprised at considering what he's been going through.

I'm still finding it hard to think about anything else other than his current health state. It's consuming me, and i think I'm smothering him. I just can't go back to the way things were right now in my mind.

Offline Tonny2

  • Member
  • Posts: 2,258
Re: Partner newly diagnosed with HIV and PCP
« Reply #35 on: February 20, 2017, 04:36:59 pm »


        OJO     HELLO LEE, IT'S GOOD TO HEAR THAT YOUR PARTNER IS DOING BETTER...I THINK NOW YOU NEED TO TAKE SOME TIME FOR YOURSELF, HE IS GOING TO BE FINE...I'M GLAD THAT YOU LEARNT HOW TO COOK...THANKS FOR THE UPDATE, BEST OF LUCK FOR BOTH OF YOU...HUGS                                                      OJO

Offline Ptrk3

  • Global Moderator
  • Member
  • Posts: 2,715
Re: Partner newly diagnosed with HIV and PCP
« Reply #36 on: February 20, 2017, 04:49:39 pm »
Yes, the meds and treatments today are truly miraculous!  I'm glad things continue (and will continue) to improve for your partner.

Also, as Tonny2 aptly puts it, take some time for yourself:  your partner is fine and well on the road to complete recovery.

Thanks for the update!
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline harleymc

  • Member
  • Posts: 1,293
Re: Partner newly diagnosed with HIV and PCP
« Reply #37 on: February 24, 2017, 08:27:04 pm »
Thanks for the updates.
I'm very happy for you both. The KS will fade with time.

A 45 minute walk including hills, is nothing to be sneezed at. A lot of people aren't that active.

Well done both of you.

Offline Lee82

  • Member
  • Posts: 20
Re: Partner newly diagnosed with HIV and PCP
« Reply #38 on: April 30, 2017, 04:15:42 am »
Hi all, as these forums have given me so much support over the past six months I thought it was important that I update you so anyone going through the same thing in the future can maybe use this as a reference.

So...my partner completed his 6 sessions of chemotherapy for KS and a couple of weeks ago he was told they didn't want to give him anymore and to see him in 3 months. One of the benefits of his chemo was they checked his oxygen sats every trip and every time they were above 95% so that's a big relief for me to know the PCP side of his condition has improved beyond recognition.

The KS is still there, some have faded, some remain, but all are flat and not raised like before which the doctors believe is a good sign. He is going back to work 5 days a week next month (been on a phased return), and we are getting out and about as before his diagnosis.

He recently had his CD4 levels taken again. Before chemo he had jumped from 10 to 200. Now it has gone down to 160 and undetectable but the dr is happy with that as a drop was to be expected due to the chemo.

So now we are in a state of no weekly visits to hospital, and just 3 monthly checkups. Tivicay and truvada at 8am and septrin at 6pm. I'm doing ok, still a massive worrier and I get told off sometimes for being a bit overbearing. I will admit to getting upset about the drop in cd4 numbers but it was never going to increase with chemo. The KS is a visual reminder of what we've went through, like a battle scar. Wish they would all just fade away. So if anyone who is a partner of someone who is in hospital now, feeling as though things will never improve, I'm here today to tell you that they do. It's a slow process, but you will both get through it. Thanks as ever for all your support.
« Last Edit: April 30, 2017, 04:17:45 am by Lee82 »

Offline paintedroom

  • Member
  • Posts: 360
  • Dx`d July 2016
Re: Partner newly diagnosed with HIV and PCP
« Reply #39 on: April 30, 2017, 06:57:59 am »
Can`t really add much more other than to say how sorry i am for all your trouble -you have been through the mangle and you are now in a winning mode.Just a small addition on the ks - I was DXd in July of last year,Cd4 50 and two KS lesions.It`s 9 months since and i couldn`t tell you where the one on my neck was.The other,large and raised on the back of my calf,is almost all gone now.I generally inspect it closely when i`m siting on the loo and under the harsher toilet light.As it diminishes,i`m reminded that everything is working as it should and i`m just getting better and better.

Wishing you both the very best and looking forward to your ever improving updates..Hugs from across the Irish sea.
Dx`d mid July 2016
8/8/2016 - CD4 50     VL 50,000
5/9/2016 -  CD4 150
13/9/2016  VL  undetectable.
March `17 - CD4 193   VL undetectable.
March  `18 CD4 214    VL undetectable
March 2019 CD4 325  VL UD
Genvoya

Offline CaveyUK

  • Global Moderator
  • Member
  • Posts: 1,635
Re: Partner newly diagnosed with HIV and PCP
« Reply #40 on: April 30, 2017, 07:09:07 am »
So now we are in a state of no weekly visits to hospital, and just 3 monthly checkups. Tivicay and truvada at 8am and septrin at 6pm. I'm doing ok, still a massive worrier and I get told off sometimes for being a bit overbearing. I will admit to getting upset about the drop in cd4 numbers but it was never going to increase with chemo. The KS is a visual reminder of what we've went through, like a battle scar. Wish they would all just fade away. So if anyone who is a partner of someone who is in hospital now, feeling as though things will never improve, I'm here today to tell you that they do. It's a slow process, but you will both get through it. Thanks as ever for all your support.

Hi. Any reason the septrin is being taken at a separate time to the Tivicay/Truvada? When I was on it, I took them all at the same time - made things easier that way!

As for the 'drop' in CD4 numbers. I don't think they warrant getting upset over....a drop from 200 to 160 is pretty small and can even be due to natural variation. If the chemo only resulted in a drop of 40 then I'd say that is a great result, especially when you consider that fairly mundane things like quitting smoking can have a similar effect (initially). The important thing is he is undetectable and clearly well on the road to recovery...

HIV - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here:
PEP and PrEP

Offline Wade

  • Global Moderator
  • Member
  • Posts: 3,447
Re: Partner newly diagnosed with HIV and PCP
« Reply #41 on: April 30, 2017, 10:20:52 am »
Great update Lee  :)
HIV 101 - Basics
 HIV 101
 You can read more about Transmission and Risks here:
 HIV Transmission and Risks
 You can read more about Testing here:
 HIV Testing
 You can read more about Treatment-as-Prevention (TasP) here:
 HIV TasP
 You can read more about HIV prevention here:
 HIV prevention
 You can read more about PEP and PrEP here
 PEP and PrEP

Offline leatherman

  • Member
  • Posts: 7,691
  • Google and HIV meds are Your Friends
Re: Partner newly diagnosed with HIV and PCP
« Reply #42 on: April 30, 2017, 11:12:57 am »
Quote
a drop from 200 to 160 is pretty small and can even be due to natural variation.
considering the natural variation within a day can be up to 100 points, a 40 point change means nothing when the cd4 count could change by 80 or 90 and still be no change.

really the only way to consider your cd4 counts is by the trend of at least 3 tests over at least a 3 month period. the trend from 10 to 200 to 160 is a pretty good trend upwards.
leatherman (aka mIkIE)


chart from 1992-2017
Tivicay/Prezcobix

Offline Ptrk3

  • Global Moderator
  • Member
  • Posts: 2,715
Re: Partner newly diagnosed with HIV and PCP
« Reply #43 on: April 30, 2017, 11:14:47 am »
I'm glad to read, Lee82, that things continue to improve for you and your partner.  Stay the course and things will continue to improve, maybe slowly but surely at first, but then in leaps and bounds.  It does get better and it keeps getting better! ;)
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline harleymc

  • Member
  • Posts: 1,293
Re: Partner newly diagnosed with HIV and PCP
« Reply #44 on: May 01, 2017, 04:17:34 am »
Glad things are going well.

Relax, smeel the roses, take deep breaths

Offline Tonny2

  • Member
  • Posts: 2,258
Re: Partner newly diagnosed with HIV and PCP
« Reply #45 on: May 01, 2017, 09:24:16 pm »


         ojo         Hello Lee, I'm glad your partner is doing better, he is pretty lucky to have you as a partner and on his side all this time...I think, it's time for you to take a break and relax...I wouldn't worry for his soldiers (cd4), he is going through chemo and his body is fighting KS...wishing you the best for both of you...cyber hugs       ojo

Offline Lee82

  • Member
  • Posts: 20
Re: Partner newly diagnosed with HIV and PCP
« Reply #46 on: June 26, 2017, 07:08:50 pm »
Hi all, it's been about 6 weeks now since I last posted so thought it would be good for an update in my little diary on here :)

He continues to get stronger each day. We went for a weeks holiday in Cornwall last week and he was driving around, walking and relaxing on the beach. It was such a great break and was so good to get back to some sense of normality after the last 8 months.

We have his next cd4 check mid July so hoping he gets above the 200 mark now he's not having any chemo. I think once he is above that my nerves will settle a bit. I'm nowhere near as bad as before but 'do you feel OK' still seems to be my most common question to him.

I'm going to be interested in what the Professor thinks about his KS. All the lesions are flat now and a lighter brown colour than before, but they are still prominent. Inside, I still find it hard to look at them as its a daily reminder and I know he hates them too. Hope we can stop the Bactrim soon as well.

Think I'm going to hunt down some groups for partners of people with HIV/AIDS. I've thought about seeing a counsellor but I want to speak with people who have experience in the matter (probably why I'm always on here!).

Anyway hope you are all well. Xx


Offline harleymc

  • Member
  • Posts: 1,293
Re: Partner newly diagnosed with HIV and PCP
« Reply #47 on: June 27, 2017, 04:31:20 am »
Sounds like you had a great time in Cornwall.

Offline Tonny2

  • Member
  • Posts: 2,258
Re: Partner newly diagnosed with HIV and PCP
« Reply #48 on: June 27, 2017, 01:21:43 pm »


         ojo         Hello Lee, I'm happy for you two...I hope you get good news from the professor...You are a great partner, I hope you can find someone to talk about your experiences in person, it will help you a lot...best wishes, keep us posted and hugs for both of you                                                                                                  ojo

Offline Lee82

  • Member
  • Posts: 20
Re: Partner newly diagnosed with HIV and PCP
« Reply #49 on: July 27, 2017, 02:04:01 pm »
Hi everyone,

He had his most recent blood work done and although he remains undetectable, his cd4 has only gone up ten - 160 to 170. So I feel really down about it all at the moment, was really hoping and expecting it to be over 200. His doctor says its to be expected 3 months after his last chemo, but I'm a bit gutted to be honest.

 


Terms of Membership for these forums
 

© 2019 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.