Author Topic: Tested + for HIV, diagnosed with PCP and AIDS... (Read 41419 times)

Joe K · « **Reply #50 on:** May 21, 2015, 04:18:08 pm »

Quote from: Jeff G on May 21, 2015, 03:16:13 pm

That doctor should have never said that especially right in front of NKB unless he asked specifically . I am not much of a praying man but you will have my prayers, please take care of yourself as well . Hugs .

Jeff makes a very valid point. You might want to tell the doctor to give you the updates, so you can "filter" them for your guy. Yes, you need the truth on his prognosis, but it doesn't mean that NKB needs to hear all the gory details. Having been where your guy is, hope can be fleeting and the last thing he needs, is to hear he is not doing well. Facing our mortality can be daunting and at times like these, the less NKB knows, may be the best medicine for him right now.

Joe

Jeff G · « **Reply #51 on:** May 21, 2015, 05:57:31 pm »

When I was very sick I asked my doctors point blank what my chances were for survival and recovery because I wanted to know but I think thats an individual choice … had I not asked I would have been offended if it was offered .

zach · « **Reply #52 on:** May 21, 2015, 06:08:14 pm »

yeah, i'm not down with keeping information from a patient, no matter how dire

i expect my doctors to provide me a full and detailed diagnosis and prognosis, i want to be an active participant in my care

my own truth, as much as we tell people not to use dr google, the two most serious issues deal with i self diagnosed days before a doctor said the words. and knowing exactly where i stand has always helped me to better research and be more informed

thats just me though

Joe K · « **Reply #53 on:** May 21, 2015, 06:43:07 pm »

Quote from: zach on May 21, 2015, 06:08:14 pm

yeah, i'm not down with keeping information from a patient, no matter how dire

i expect my doctors to provide me a full and detailed diagnosis and prognosis, i want to be an active participant in my care

my own truth, as much as we tell people not to use dr google, the two most serious issues deal with i self diagnosed days before a doctor said the words. and knowing exactly where i stand has always helped me to better research and be more informed

thats just me though

Zach,

Often, it isn't about us, it's about those we are trying to support. This would be one of those times.

Joe

just-hopeful · « **Reply #54 on:** May 21, 2015, 06:54:02 pm »

ID Doctor came in later and said he was going to re-evaluate everything going on NKB. Charts, meds, labs, everything and see about changing some things up so he has more "good" days than "bad" days. It upped his spirits.

Plus I bought him some goodies from the store (seasons 1 and 2 of south park, a candy bar and me a memory foam mattress topper to put on this crappy ass excuse for a couch in his hospital room so I can stay overnight)

Joe K · « **Reply #55 on:** May 21, 2015, 06:57:29 pm »

Just,

I cannot help but admire, someone, who understands the power of true unconditional love.

Joe

Jeff G · « **Reply #56 on:** May 21, 2015, 06:58:33 pm »

Thanks for the update !

zach · « **Reply #57 on:** May 21, 2015, 08:21:55 pm »

season 12 episode 1... tonsil trouble

when he can laugh about it, things are ok

DANIELtakashi · « **Reply #58 on:** May 22, 2015, 04:21:32 am »

Hope you are all right.

just-hopeful · « **Reply #59 on:** May 27, 2015, 04:35:04 pm »

Chest tube was removed today. He seems to be doing good.

Ptrk3 · « **Reply #60 on:** May 27, 2015, 05:45:31 pm »

Glad to hear things are improving. It sounds like the worst may be behind him now. My thoughts continue to be with you. Best wishes for a full and speedy recovery.

anna82 · « **Reply #61 on:** May 27, 2015, 07:04:37 pm »

Get well soon x

titik · « **Reply #62 on:** May 27, 2015, 10:21:12 pm »

Good to hear about his progress. I hope to see him posting here very soon.

shaunsag · « **Reply #63 on:** May 30, 2015, 02:09:38 am »

NKB PLEASE LISTEN to great people on here like "Zach" and "leatherman" they have been around for a long time, I'm terribly sorry to hear of your situation, and I would like for you to keep fighting for those who are recent diagnosed such as myself, hang in there, there are more brighter days to come.

just-hopeful · « **Reply #64 on:** June 05, 2015, 08:26:20 pm »

We requested a transfer earlier this week to a new hospital with an HIV specialist on the ID team. Since being moved NKB has been taken off of a significant amount of antibiotics as well as the steroids. He is improving well and today was taken off the high flow oxygen, down from 12L to 6L. I absolutely LOVE his HIV doctor. She is very informative and has given us a lot of hope.

New numbers came in today
Viral Load: 588
CD4 Count: 88

When he was diagnosed his Viral Load was 12 million and his CD4 count was 6. So this AMAZING progress. His new dr. said he did go through IRIS and ARDS and that explains a lot of things about how he has been feeling in the past few weeks. But things are looking up.

Just thought I'd share.

Jim Allen · « **Reply #65 on:** June 05, 2015, 11:00:05 pm »

Quote from: just-hopeful on June 05, 2015, 08:26:20 pm

We requested a transfer earlier this week to a new hospital with an HIV specialist on the ID team. Since being moved NKB has been taken off of a significant amount of antibiotics as well as the steroids. He is improving well and today was taken off the high flow oxygen, down from 12L to 6L. I absolutely LOVE his HIV doctor. She is very informative and has given us a lot of hope.

New numbers came in today
Viral Load: 588
CD4 Count: 88

When he was diagnosed his Viral Load was 12 million and his CD4 count was 6. So this AMAZING progress. His new dr. said he did go through IRIS and ARDS and that explains a lot of things about how he has been feeling in the past few weeks. But things are looking up. Just thought I'd share.

Great to hear the excellent progress and that things are looking up.
Wishing you both the best.

titik · « **Reply #66 on:** June 06, 2015, 06:18:28 am »

Those are amazing results. Wow. I'm so glad he is doing well. Here is hoping he continues to do so. Thanks for the updates, just-hopeful.

Jeff G · « **Reply #67 on:** June 06, 2015, 09:33:26 am »

Im loving that update. It sounds like he has turned the corner and is on his way back to health. I hope you are well and taking care of you as well .

Almost2late · « **Reply #68 on:** June 06, 2015, 09:54:48 am »

WONDERFUL NEWS

DANIELtakashi · « **Reply #69 on:** June 06, 2015, 10:01:07 am »

Happy news.
Thank you for telling us.

よかったですね。頑張ってください。

Tonny2 · « **Reply #70 on:** June 06, 2015, 02:20:51 pm »

ojo Great news, happy for you two...hugs ojo

Iceblubud · « **Reply #71 on:** June 09, 2015, 05:45:39 am »

Wonderful news... I've been praying and hoping that you'll get a break and that things would turn to better. Thank you so much for sharing and please know that a lot of people are with you during these tough times... Hugs and kisses!!!!

britchick · « **Reply #72 on:** June 09, 2015, 08:12:34 am »

Fantastic to hear such great news.Thanks for keeping us updated.

britchickxx

Richie_R2 · « **Reply #73 on:** June 09, 2015, 12:39:04 pm »

Even those of us who have thus far been silent on this thread are reading it, and eagerly awaiting any additional info, with bated breath and fledgeling hope.

Also, would like to concur with those who admire the love and support you're giving him. Trust us, we know: It makes all the difference in the world.

Joe K · « **Reply #74 on:** June 09, 2015, 05:19:55 pm »

Hello Just,

I am so pleased to hear how your guy is improving every day. Your story is a testament to the power of unconditional love. Congrats to you both, for weathering a challenging storm.

Joe

DodgerDawg · « **Reply #75 on:** June 09, 2015, 10:16:33 pm »

Very good news!

DD

just-hopeful · « **Reply #76 on:** June 10, 2015, 10:41:29 pm »

NKB has been discharged from the hospital and is home! Stairs are a challenge but considering everything he's been through, he's doing pretty great. He's looking forward to taking a bath/shower at home and a night of undisturbed sleep since there will be no nurses or x-ray techs or anyone trying to "steal my blood at 3am. MFing vampires." lol So just wanted to share the good news.

Joe K · « **Reply #77 on:** June 10, 2015, 10:44:29 pm »

That's wonderful news. Enjoy a nice evening with your guy and thanks for the update.

Joe

Jeff G · « **Reply #78 on:** June 10, 2015, 11:36:26 pm »

Quote from: just-hopeful on June 10, 2015, 10:41:29 pm

NKB has been discharged from the hospital and is home! Stairs are a challenge but considering everything he's been through, he's doing pretty great. He's looking forward to taking a bath/shower at home and a night of undisturbed sleep since there will be no nurses or x-ray techs or anyone trying to "steal my blood at 3am. MFing vampires." lol So just wanted to share the good news.

This made my day ! Thanks for the update, onward !

shaunsag · « **Reply #79 on:** June 11, 2015, 05:10:15 am »

Quote from: richardhsmithson on May 12, 2015, 06:07:52 pm

Hey buddy,

Let me tell you my story. New years eve 2012, I began running a fever of 103. I thought it was the flu, and I dealt with it, I thought. In February I got sick again and I went to the doctor PCP and thrush. The oral HIV test cane back negative. I dealt with this until June 22, 2013. Fevers everyday, felt like crap, some days so hard to breathe. I had gotten so sick and I was so weak, I went to the ER and again thrush and pcp. I got another HIV test that again came back normal. My doctor tested my blood and it came back reactive. The western blot was indeterminate.... Very puzzled I went to the health department and they rushed my test because I had been so sick. I went to my first visit with my HIV doctor and I had brought my parents with me and. She said we have to work hard to get your cd4 count up. I asked that question that echos so loud in my ears that I still get chills.. My cd4 count was 5. I just thought I was positive, now I have AIDS. I was so scared that my life was going to end. Well my friend over 2 years later, I am undetectable... That happened after 2 months on meds. I am now on the threshold of my CD4 count above 500.... You have to listen to what the doctor says and don't be afraid to ask questions... Stay strong my friend and if you need to talk.... I am here.

Much Love,
RICHIE

Richie that is great news to hear..

Jim Allen · « **Reply #80 on:** June 12, 2015, 06:12:55 pm »

Quote from: just-hopeful on June 10, 2015, 10:41:29 pm

NKB has been discharged from the hospital and is home! Stairs are a challenge but considering everything he's been through, he's doing pretty great. He's looking forward to taking a bath/shower at home and a night of undisturbed sleep since there will be no nurses or x-ray techs or anyone trying to "steal my blood at 3am. MFing vampires." lol So just wanted to share the good news.

Glad to hear he's back home and It's not good news, it's excellent news.

DodgerDawg · « **Reply #81 on:** June 22, 2015, 02:27:53 pm »

It's been quite a while; hopefully all is well? Anyone know for sure?

DD

just-hopeful · « **Reply #82 on:** June 22, 2015, 03:26:08 pm »

Quote from: DodgerDawg on June 22, 2015, 02:27:53 pm

It's been quite a while; hopefully all is well? Anyone know for sure?

DD

Things are going well. He was considering posting an update but decided not to. He doesn't get online as much as I do. He's walking pretty well - some occasional balance issues. Breathing alright for the most part. Our room is upstairs so he has to go up and down and that's when his oxygen level will drop and he has to catch his breath. Still oxygen dependent. Today we're finally getting his haircut after his "long" stint in the hospital. lol. We've been going swimming every few days. Him being on oxygen is our biggest dilemma because we can't really go anywhere. We have portable tanks but they only last like an hour so we don't really go anywhere unless absolutely necessary.

Tonny2 · « **Reply #83 on:** June 29, 2015, 04:13:09 pm »

ojo Hello!, great to hear he is doing well...happy for you two, hugs ojo

shaunsag · « **Reply #84 on:** July 01, 2015, 07:16:18 am »

SO HAPPY TO HEAR THAT, YOU ALL HAVE MADE IT PASSED THE DARK DAYS, NO ITS TIME TO ENJOY SOME LIGHT!!!!

TheNormalLife · « **Reply #85 on:** July 01, 2015, 10:20:36 am »

Beautiful news, I am very glad for you. Amazing today's treatments, your guy's strength and your dedication.

Many hugs to you two!

Ray.

just-hopeful · « **Reply #86 on:** July 14, 2015, 06:07:46 pm »

We just got back from today's appointment. We have some good news.

NKBs new numbers
CD4: 343
VL: 240
% CD4: 9.8

His CD8 is 2545 and they seemed to be concerned about this. The PA said she is worried he has some other type of infection going on. But physically he appears to be in the best health since all of this began. She really scared us with this CD8 crap but then I talked to Zach and he kinda helped us feel relived and happy about the CD4 count. So we're happy now!

shaunsag · « **Reply #87 on:** July 15, 2015, 05:12:52 am »

Quote from: just-hopeful on July 14, 2015, 06:07:46 pm

We just got back from today's appointment. We have some good news.

NKBs new numbers
CD4: 343
VL: 240
% CD4: 9.8

His CD8 is 2545 and they seemed to be concerned about this. The PA said she is worried he has some other type of infection going on. But physically he appears to be in the best health since all of this began. She really scared us with this CD8 crap but then I talked to Zach and he kinda helped us feel relived and happy about the CD4 count. So we're happy now!

Hello, Im not sure about CD8, but I'm glad his cd4 count is looking better.!

zach · « **Reply #88 on:** July 15, 2015, 11:12:08 pm »

dawww... thank ya, glad i could help yall feel better... and hope he's doing better too

interested to hear what the ID doc says about the CD8, like i said, my bet is it's elevated from the immune response and inflammation he's been dealing with

but i'm no doctor

take good care of him, one day when you're down and out you can hang this over his head and milk it for all it's worth

(2am baby feeding and diaper changes)

(too soon?)

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Author Topic: Tested + for HIV, diagnosed with PCP and AIDS... (Read 41419 times)