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Author Topic: Diagnoised whilst very sick a few months ago  (Read 2261 times)

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Offline Cheltlee

  • Member
  • Posts: 16
Diagnoised whilst very sick a few months ago
« on: January 16, 2014, 02:30:43 PM »
Ok, so I don't usually use forums etc. but I have just been to hell and back over the last few months and I am an emotional wreck at the moment, this site was suggest to me.

Back at the beginning of August 2013 I started to feel a little unwell and was taking days of work just not being able to get up and out of the house. Eventually my boyfriend called the doctors and after a few weeks of run of the mill antibiotics, for a 'chest infection' I was admitted to hospital with  pneumonia mid September.

I was told I would be tested for things including HIV because I was 29 and presenting with pneumonia, a few days later I was told I had tested positive for HIV. However, my condition got better and a was discharged and referred to a HIV specialist.

Within one week I had been re-admitted to hospital as an emergency, 71% o2 stats temperature and heart rate were off the scale. I was put straight under the care of specialist consultants and started a very intensive course of antibiotics and high flow oxygen breathing support. 10 days or so in hospital I was well enough to go home, 15+ tablets a day to take but I was glad to get home.

It turns out that my CD4 count was 17, VL was 330k and I had tested positive for Hep B. I had actually had PCP which is why the first wave of treatment improved but didn't resolve the issue.

Fast forward a couple of months and I am on maintenance antibiotics for PCP and TB as well as my HIV meds. I am feel better and things are improving but it is only just really started to hit home that not only am I HIV+ and HEP B I am in the AIDS stage of the infection. It still sounds so cereal, but I am an emotional wreck at the moment and as much as I have a supportive partner, friends and family I just feel so down about all this. 
September 2013 - Diagnosed CD4 17, VL 330,000
September 2013 - Diagnosed PCP
Started Truvada - Darunavir - Ritonavir -
Co-trimoxazole - Azithromycin
October 2013 - CD4 74, VL 5500
December 2013 - CD4 100, VL 70
February 2014 - CD4 106, VL 69

Online mecch

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  • Posts: 11,905
  • red pill? or blue pill?
Re: Diagnoised whilst very sick a few months ago
« Reply #1 on: January 16, 2014, 02:38:19 PM »
That was certainly a harrowing and painful experience.
How are your energy levels now? How are your stats now, a few months on the medicine.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Online Jeff G

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  • How am I doing Beren ?
Re: Diagnoised whilst very sick a few months ago
« Reply #2 on: January 16, 2014, 02:41:50 PM »
Welcome to the forums . I can see why you describe yourself as a wreck after what you have been though . The good news is that it gets better and you are going to be OK .

I have lived with HIV for over 30 years and there is nothing special about me so you can do it too . It will take awhile for you to regain your strength but you will get there . There are many of us here that found out our HIV status when we were very sick and some like myself who tested and found out early on but in the end its the modern meds that keep all of us going that need them  .

I'm sorry you need us but glad you found us . 

Offline Cheltlee

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  • Posts: 16
Re: Diagnoised whilst very sick a few months ago
« Reply #3 on: January 16, 2014, 03:07:12 PM »
My energy levels are getting there and my stats have returned to normal.
Physically I am in a massively different place to where I was 3 months ago - the effectiveness of modern meds is extraordinary.

The emotional side of things is where I am having my issues - I just feel so down and every time I talk about it, I just end up crying my eyes out.

At times I am angry at myself for letting this happen, I haven't been the best practitioner of safe sex, especially when I was younger.
September 2013 - Diagnosed CD4 17, VL 330,000
September 2013 - Diagnosed PCP
Started Truvada - Darunavir - Ritonavir -
Co-trimoxazole - Azithromycin
October 2013 - CD4 74, VL 5500
December 2013 - CD4 100, VL 70
February 2014 - CD4 106, VL 69

Offline 2tcells

  • Member
  • Posts: 93
Re: Diagnoised whilst very sick a few months ago
« Reply #4 on: January 16, 2014, 03:09:46 PM »
Hope ur feeling better now, sounds like me I got sick then sicker and sicker for 6 weeks til I went to the er and found out I have hiv back in july I had the pneumonia and trush and stomach infection, im 28 had cd4 of 2 and vl load 220k. I was taking 14 pills a day its like a meal of pills your full when your done lol. Now 6 months later im down to 4 pill most days and 7 one day a week. Cd4 is up to 54 and vl undetectable.  I feel much better. after thinking about me having aids a lot which was a shock to me I have pretty much got use to the idea of me having aids and dont think about it very often anymore. Since the meds started working I have only been sick for like one or 2 days in a row one time which went away on its own besides that no issues. What meds did they put you on?
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 yay!
8-5-14                     cd4- 95    vl-ud boo

Offline Cheltlee

  • Member
  • Posts: 16
Re: Diagnoised whilst very sick a few months ago
« Reply #5 on: January 16, 2014, 03:22:11 PM »
Truvada, Darunavir and Ritonavir for the HIV and HEPB.

2 co-trimoxazole a day and 5 azithromycin once a week.

Last blood test was CD4 100 and VL 70.

I am due for a liver scan and further blood tests next week, hoping VL is now UD, fingers crossed.
September 2013 - Diagnosed CD4 17, VL 330,000
September 2013 - Diagnosed PCP
Started Truvada - Darunavir - Ritonavir -
Co-trimoxazole - Azithromycin
October 2013 - CD4 74, VL 5500
December 2013 - CD4 100, VL 70
February 2014 - CD4 106, VL 69

Online mecch

  • Member
  • Posts: 11,905
  • red pill? or blue pill?
Re: Diagnoised whilst very sick a few months ago
« Reply #6 on: January 16, 2014, 03:24:49 PM »
My energy levels are getting there and my stats have returned to normal.
Physically I am in a massively different place to where I was 3 months ago - the effectiveness of modern meds is extraordinary.

The emotional side of things is where I am having my issues - I just feel so down and every time I talk about it, I just end up crying my eyes out.

At times I am angry at myself for letting this happen, I haven't been the best practitioner of safe sex, especially when I was younger.

What is done is done.  The virus is just a virus it is not a judgement on your sexual practices.  You can see it like that, about yourself, but naturally you can't make any generalisations to the HIV+ population about who did what "wrong" etc etc.  Billions of people screw without condoms...  It would have been nice to avoid HIV but the breaks are, we didn't.  You probably practised your fair amount of safe sex and screwed up. Like so many people do.

The fact that you had an "AIDS diagnosis" --- Well did you actually, or are you just considering that you fit the criteria?   A lot of these labels, these days, mean different things to different people.  An AIDS diagnosis can be an advantage for insurance purposes or disability purposes, etc etc.  But it can also be perfectly meaningless.

In your case, if you rebuild your system back to the safety zone, and if you can figure out that you didn't have low CD4s for all that long, perhaps there are not many ramifications about having had AIDSY numbers, going forward, for your health. 

From the little you have shared, I can say already I hope you count your blessings that you have the support of a partner, friends, and family. And it sounds like the medical care is solid and affordable, so really, you are golden in a  lot of ways.   Hopefully eventually you can shift the heavy feeling of being "HIV+" to a space where its a "chronic, manageable condition" and as you see just how manageable, you'll get some mojo back. 

“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline 2tcells

  • Member
  • Posts: 93
Re: Diagnoised whilst very sick a few months ago
« Reply #7 on: January 16, 2014, 03:33:11 PM »
Ya im on the same hiv meds as you and 2 azithromicin once a week plus fluconozole. Ur cd4 is going up quick so thats good I would bet ur vl will be undetectable on ur next bloodwork
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 yay!
8-5-14                     cd4- 95    vl-ud boo

Offline Cheltlee

  • Member
  • Posts: 16
Re: Diagnoised whilst very sick a few months ago
« Reply #8 on: January 16, 2014, 04:12:01 PM »
What is done is done.  The virus is just a virus it is not a judgement on your sexual practices.  You can see it like that, about yourself, but naturally you can't make any generalisations to the HIV+ population about who did what "wrong" etc etc.  Billions of people screw without condoms...  It would have been nice to avoid HIV but the breaks are, we didn't.  You probably practised your fair amount of safe sex and screwed up. Like so many people do.

The fact that you had an "AIDS diagnosis" --- Well did you actually, or are you just considering that you fit the criteria?   A lot of these labels, these days, mean different things to different people.  An AIDS diagnosis can be an advantage for insurance purposes or disability purposes, etc etc.  But it can also be perfectly meaningless.

In your case, if you rebuild your system back to the safety zone, and if you can figure out that you didn't have low CD4s for all that long, perhaps there are not many ramifications about having had AIDSY numbers, going forward, for your health. 

From the little you have shared, I can say already I hope you count your blessings that you have the support of a partner, friends, and family. And it sounds like the medical care is solid and affordable, so really, you are golden in a  lot of ways.   Hopefully eventually you can shift the heavy feeling of being "HIV+" to a space where its a "chronic, manageable condition" and as you see just how manageable, you'll get some mojo back.

Thanks for the reply Mecch.

The term that was actually used was 'late stage HIV infection'. Whatever you want to quantify that as.

For all that has gone on I do count myself very lucky. Having the friends and family support is one thing but my boyfriend sticking with me through all this is just incredible - he has been tested twice since I was diagnosed and has come back negative, which I am so utterly amazed and thank full for.

As for the medical support, since I was diagnosed it has been first class.

despite all this I feel down when I know I am very lucky all considered.

I am sure you are right and so mojo will reappear, will just give it some time. It all happened so quickly now that things have settled physically the emotions have kicked in.

Thanks for all the messages so far. just talking with people that are going through the same kinda thing helps a lot. Glad I posted here.

 

September 2013 - Diagnosed CD4 17, VL 330,000
September 2013 - Diagnosed PCP
Started Truvada - Darunavir - Ritonavir -
Co-trimoxazole - Azithromycin
October 2013 - CD4 74, VL 5500
December 2013 - CD4 100, VL 70
February 2014 - CD4 106, VL 69

Offline Cheltlee

  • Member
  • Posts: 16
Re: Diagnoised whilst very sick a few months ago
« Reply #9 on: January 16, 2014, 04:14:19 PM »
Ya im on the same hiv meds as you and 2 azithromicin once a week plus fluconozole. Ur cd4 is going up quick so thats good I would bet ur vl will be undetectable on ur next bloodwork

I was on the fluconazole for a while but that has all cleared up now, not pleasant.

There has been a marked improvement over the last two blood works, I will let you know what the outcome of the next one is in a couple of weeks.

Looks like your CD4 is steadily on the rise to :))
September 2013 - Diagnosed CD4 17, VL 330,000
September 2013 - Diagnosed PCP
Started Truvada - Darunavir - Ritonavir -
Co-trimoxazole - Azithromycin
October 2013 - CD4 74, VL 5500
December 2013 - CD4 100, VL 70
February 2014 - CD4 106, VL 69

Offline britchick

  • Member
  • Posts: 438
Re: Diagnoised whilst very sick a few months ago
« Reply #10 on: January 16, 2014, 05:39:16 PM »
Hi Cheltlee

Its good that you found the forum and you will get a lot of support here.
You have been through so much....and you might not know it , but you are already doing well , to go from cd4 17  to 100.
Im really glad that your partner is there for you and you might also want to seek counselling when you feel up to it.
I know everyones different, but its a lot to process, so much happenned in such a short time......feel free to ask any questions .

I had a cd4 count of 43, and other OI.....but other poz members had even lower numbers than us....and its great to hear that they are now undetectable.....and you will hear that news soon

Please take as much rest as you can, I kept and still keep a diary to help me process my thoughts.

britchickxx

 


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