Author Topic: PCP (Read 70956 times)

DANIELtakashi · « **Reply #150 on:** February 06, 2015, 04:41:18 am »

Greetings from TOKYO.
We are in the mourning time for two of our nationals that were killed by the ISIS terrorists.
Never have I heard of so cruel a thing in my life.

I have a question. Yesterday my doctor told me assertively that this disease is now a MANSEI SHIKKAN, the direct translation of which in English is CHRONIC DISEASE. Most of the readings that I have done in English, however, say it is a MANAGEABLE DISEASE. Do those two have the same meaning to you? In my native language, they are slightly different . I would appreciate if you could help me clarify this thing.
Arigato.

leatherman · « **Reply #151 on:** February 06, 2015, 09:41:07 am »

Quote from: AusShep on February 05, 2015, 12:12:02 am

I guess once you've had it the fear (or memory of it at least) never completely goes away when you have certain respiratory symptoms, but PCP won't happen again while your immune system is in good shape.

true dat! both the good advice about PCP not happening again (although you can still get regular pneumonia, so get that pneumococcal vaccine!), and about the fear. It is very hard for a while after you have been that sick to get past the point of worrying if every cough, wheeze, or sneeze is going to be another trip to the hospital or to the morgue.

however Daniel, don't forget what the PCP did to you. PCP is very hard and damaging to the lungs. You may notice this for years to come. My last of 3 bouts of PCP was about 16 years ago. Although I exercise regularly and engage in a lot of physical activities, I still notice the lung damage sometimes when I do a lot of exertion. It doesn't stop me at all, I just feel winded a little quicker.

Quote from: DANIELtakashi on February 06, 2015, 04:41:18 am

CHRONIC
MANAGEABLE

HIV, for those more recently diagnosed, is now a CHRONIC MANAGEABLE disease. It's chronic because there is no cure and there is no way to totally eradicate it in a person's system so there is always some effect from the HIV. It's manageable because we have treatment that will keep HIV in check, along with many of the side effects of the HIV and/or the meds.

on the other hand, just as it has always been, HIV is still the same TERMINAL disease that it has always been - but only when it's untreated.

DANIELtakashi · « **Reply #152 on:** February 06, 2015, 09:51:24 am »

Leatherman, you are the greatest. I hope I am not sounding like RICHARD SIMMON.
I first saw him on TV in Honolulu years ago and my reaction was WHAT in the world is that?
It was about DEAL A MEAL.

Arigato from the country of FUJIYAMA .

DANIELtakashi · « **Reply #153 on:** February 06, 2015, 09:52:12 am »

I mean RICHARD SIMMONS .

DANIELtakashi · « **Reply #154 on:** February 11, 2015, 04:34:58 am »

Tomorrow I am having a visit to the hospital.
Very nervous I am now. Hope the viral load will be lower than twenty.

DANIELtakashi · « **Reply #155 on:** February 12, 2015, 01:08:02 am »

Hi from TOKYO.

I have just returned from the hospital.
CD4, 320; and undetectable. The frequency of checking was changed from every two months to every three months. My doctor told me again that people do not die of this disease if treated.
He is a JAPANESE and often goes to Africa to help the local physicians. Maybe I should trust him wholly now.

Thanks for reading.

leatherman · « **Reply #156 on:** February 12, 2015, 09:29:13 am »

Quote from: DANIELtakashi on February 12, 2015, 01:08:02 am

CD4, 320; and undetectable. The frequency of checking was changed from every two months to every three months.

awesome!
It won't be long until you only have blood work done every 6 months.

Tonny2 · « **Reply #157 on:** February 12, 2015, 02:05:51 pm »

ojo Hello Daniel from Tokio....good numbers amigo... now, relax and have a shot of tequila...hugs arigato ojo

DANIELtakashi · « **Reply #158 on:** February 13, 2015, 02:01:26 am »

Mikie,

Thank you very much.
Hope you are doing well.

Tonny,

Gracious, amigo.
Greetings from japon.

mecch · « **Reply #159 on:** February 13, 2015, 07:54:09 pm »

Quote from: DANIELtakashi on February 12, 2015, 01:08:02 am

Hi from TOKYO.

I have just returned from the hospital.
CD4, 320; and undetectable. The frequency of checking was changed from every two months to every three months. My doctor told me again that people do not die of this disease if treated.
He is a JAPANESE and often goes to Africa to help the local physicians. Maybe I should trust him wholly now.

Thanks for reading.

Hello dear. Yes please, trust him. Trust us. Are you still afraid of dying? It was such an overwhelming fear when you joined this forum.

DANIELtakashi · « **Reply #160 on:** February 14, 2015, 04:48:35 am »

Mecch,

Thank you.
I am still feeling afraid but try to tell myself that it will be all right.

Almost2late · « **Reply #161 on:** February 14, 2015, 09:27:51 am »

Hi Daniel

,

You are doing great, wow... You should not be afraid cause your numbers are so great.. If you are not feeling ill, you should be enjoying life like anyone else... Good luck my friend

DANIELtakashi · « **Reply #162 on:** February 14, 2015, 09:31:50 am »

Almost,

Thank you much.
Hope your number will go up, too.
Today I went to a TGIF restaurant and had barbecued chicken.

Best wishes.

DANIELtakashi · « **Reply #163 on:** February 14, 2015, 09:41:36 am »

Thank you for your nice comments, everyone.
It may sound strange but I have set a photo of my doctor as the wallpapers of my computer and my telephone so that I can see him when I feeel worried and nervous. Crazy me.
My dear Dr. Kobayashi.... 小林先生！助けてくださいね。

Tonny2 · « **Reply #164 on:** February 14, 2015, 01:08:44 pm »

oojo Hi Daniel, Daniel, Daniel....I wish I could find the right words, to make you feel better, everybody here is correct, you are going to be fine, just keep taking your meds and stop eating barbecue chicken, hahahah, if you want to be healthier, eat lots of tacos and tequila, heheh...my friend, enjoy life, we are not getting any younger....I will send you my picture, so can can set it as your pc's wallpaper...hugs ojo

DANIELtakashi · « **Reply #165 on:** February 14, 2015, 11:55:49 pm »

Tonny,

What a nice person you are !
Thank you for your kind words.
Arigato.

Please take care.

DANIELtakashi · « **Reply #166 on:** February 18, 2015, 10:56:47 am »

Hi from TOKYO.
We have had snowy weather here and again we have quite big earthquakes these days. On March 11. 2011, l was on the sixth floor of a building in TOKYO when a first big one hit. I screamed and tried to go down the stairs when the shake got worse and l fell down to the floor. Cyndi Lauper was just on her way flyng to TOKYO from the USA and her plane diverted to the YOKOTA AIRBASE instead of to TOKYO NARITA. She completed her one month tour despite so many aftershocks and the nuclear power plant accidents. Anderson Cooper left right away, though.

Today I tried running the stairs from the first floor to the fourth floor and had no problem breathing.
I ws s really worried that my lungs had been damaged due to PCP. Hope it is not. A little bit of happy news after writing about my constant worries.

DANIELtakashi · « **Reply #167 on:** February 21, 2015, 07:51:34 am »

Hi from TOKYO.

Today I learned about a person here in Japan who has been disgnosed with his CD4- 0.9.
He had at least five Ols and now is back at work. This has made me reassured that the prresent medication is awesome. He is still under 100. His story has given me lots of encouragement.
Arigato .

leatherman · « **Reply #168 on:** February 21, 2015, 08:54:16 am »

Quote from: DANIELtakashi on February 21, 2015, 07:51:34 am

His story has given me lots of encouragement.

I would hope by now that you have read enough of the studies reporting that HIV positive people, with proper medication, live a normal life span. I would hope that you have been told enough personal stories by HIV positive people who have survived AIDS, with very low CD4s, anywhere from 1 year to over 3 decades. I would hope that by now you understand the futility of wasting anymore time worrying about an AIDS death. I would hope by now you're moving on towards planing and saving for retirement and your life at 80

If you do still have any residual worries, just keep saying to yourself, "this is 2015, not 1985"

DANIELtakashi · « **Reply #169 on:** February 21, 2015, 09:43:51 am »

Leatherman Mikie,

Many thanks.
I am planning to join the group in MEMPHIS in summer.

DANIELtakashi · « **Reply #170 on:** February 26, 2015, 07:38:41 am »

Greetings from TOKYO to everyone.

I thought I should sometimes leave a message even when I have nothing in particular to ask for advice of. I am living slowly each day. Thank you for your support. I am just wondering if anyone of you has come to my country - I know Zach did.

Please let me know when you are in town.

DANIELtakashi · « **Reply #171 on:** March 01, 2015, 11:32:34 pm »

Hi.

I have just learned about AMFAR and watched some videos.
Mr. Oriol G. was introduced. Looks like a nice person.
He says he believes there will be a cure. I hope so, too.

zach · « **Reply #172 on:** March 02, 2015, 02:32:47 am »

ossu daniel!

haven't been following your thread regularly, but just had a few laughs catching up

you're doing well, great to see that

keep hanging in there, you're head is getting in the game, soon you'll own it

DANIELtakashi · « **Reply #173 on:** March 02, 2015, 02:38:13 am »

Zach,

Happy to hear our way of greeting OSSU !
You must have picked up a lot of the language when you were staying in Japan.

Thanks much.

zach · « **Reply #174 on:** March 02, 2015, 05:16:17 am »

not much, but i had some flight attendants that push me... everywhere i've been i try to pick up as much as i can

DANIELtakashi · « **Reply #175 on:** March 11, 2015, 08:39:09 am »

I don't know if I should add this to my PCP thread.
Anyway I have just learned that Chuck Panozzo of the group STYX has the same disease.
I went to a concert when the group came to Japan almost three decades ago. It was when their song Domo ARIGATO Mr. Robotto was popular. I am glad he has survived.

DANIELtakashi · « **Reply #176 on:** March 26, 2015, 05:26:42 am »

I am now in hospital, this time with mental depression.
Cannot help feeling my life has ended. Today I feel worst.
Sorry for this negative posting. Hope I will feel better.

Tonny2 · « **Reply #177 on:** March 26, 2015, 07:29:07 am »

Quote from: DANIELtakashi on March 26, 2015, 05:26:42 am

I am now in hospital, this time with mental depression.
Cannot help feeling my life has ended. Today I feel worst.
Sorry for this negative posting. Hope I will feel better.

ojo Hello Daniel, I'm sorry, plese, be strong, you will be okay...big hug on your way ojo

Jeff G · « **Reply #178 on:** March 26, 2015, 09:25:26 am »

Quote from: DANIELtakashi on March 26, 2015, 05:26:42 am

I am now in hospital, this time with mental depression.
Cannot help feeling my life has ended. Today I feel worst.
Sorry for this negative posting. Hope I will feel better.

Hi Daniel ... I am wishing you the best and hoping that you can get the help you need to move forward . I have been poz for over 30 years and I am not special, so if I can do it you can to . I have had to get help a few times in my life when I felt my problems were bigger than myself and it helped me get back on track. I applaud you for having the courage to get help, One thing many of us long term survivors have in common is that we accept what we cant change and work hard to over come the things we can change . With the right help you can do this too. Best of luck and looking forward to meeting you in Memphis .

Wade · « **Reply #179 on:** March 26, 2015, 10:07:30 am »

Hi Daniel,
I am a long time survivor also, Jeff is right about accepting things we
can't change. I had PCP many years ago too , you have have fought hard,and from what I've read sounds like your doing well with your treatment.
We all hit some bumps in the road , as Tony said be strong, a
Big Hug from Me Too ! Wade

TheNormalLife · « **Reply #180 on:** March 26, 2015, 03:37:55 pm »

Hi Daniel:

Relax buddy; you are going to be fine. You have been told so by the knowledgeable people here and most importantly, by your specialist. You have to believe.

What will make you be healthy and live up to the wonderful life expectancy of the Nippon country is your medications and your good adherence. However, you have to have a positive attitude towards this new rules of the game.

Earlier in the thread you said that therapy wasn't working making you feel less doomed. You haven't really shared your experiences with your psychologist with us. If you feel like, do so, it helps a lot; also be patient, the change will not come overnight.

On the other hand, shocking news like the DX might on some people mess with the fine chemical balance in our body and head. Maybe a pill under the supervision of a psychiatrist will restore that balance. Many times, the treatment is temporary.

All the way to Japan, a tight and loving hug.

Arigato, ライフ・イズ・ビューティフル
(did I write "life is beautiful" right?).

Ray.

britchick · « **Reply #181 on:** March 26, 2015, 04:41:15 pm »

Daniel,

I'm sending you good wishes and a big hug.You have taken a good step by getting some help.Please don't ever feel so alone.We are all here for you to listen and I promise you that it gets better.

One step at a time and one day at a time and also a huge thank you to you as your kind words and posts have helped so many people here?

Rest up and try to take it easy.Thinking about you

britchickxxx

britchick · « **Reply #182 on:** March 26, 2015, 04:42:29 pm »

Sorry .typo error ....many people here!!!

lupetto · « **Reply #183 on:** March 27, 2015, 05:26:33 am »

Daniel, I'm so sorry to hear you are dealing with depression but at the same time extremely happy that you are doing something about it and getting the help you need! You should be proud of yourself for that!

I've read the wonderful comments and encouragements you have got from other members here and I hope your fears will start to lessen soon. You are taking good care of your physical health so you shouldn't be scared of becoming ill. I hope you have someone you can talk about all your fears and emotions and find a way to feel happy again. All the best and hugs to your way!

DANIELtakashi · « **Reply #184 on:** March 28, 2015, 04:46:29 am »

Thank you, everyone.

DANIELtakashi · « **Reply #185 on:** April 05, 2015, 05:02:42 am »

Now I am out of hospital.
Thank you, everyone, for your kind words.
From TOKYO

Tonny2 · « **Reply #186 on:** April 05, 2015, 12:36:36 pm »

Quote from: DANIELtakashi on April 05, 2015, 05:02:42 am

Now I am out of hospital.
Thank you, everyone, for your kind words.
From TOKYO

ojo Hola Daniel...I'm happy for you, now, I don't know what you do, if you are still working or else,..please, keep yourself busy, keep living, life is still good with HIV....hugs ojo

Wade · « **Reply #187 on:** April 06, 2015, 09:11:39 am »

Hi Daniel,
Welcome home !
Hope you are feeling well.
Surround yourself with people and things that make you happy,
I have never been to Japan , but have always wanted to walk
through one of you country's beautiful bonsai gardens.
Maybe someday , one never knows !
Keep us posted ,
Be Well ,Wade

DANIELtakashi · « **Reply #188 on:** April 08, 2015, 07:42:18 am »

Everyone, millions of thanks from TOKYO .
I truly pray that this disease will become history in our life time, for you and me.

DANIELtakashi · « **Reply #189 on:** April 23, 2015, 05:52:26 am »

KonnIchiwa.ダニエルです。

My latest cd4 count---350 and undetectable.
Sorry l do not leave my comments often but l check this site everyday.

ありがとう！

leatherman · « **Reply #190 on:** April 23, 2015, 04:52:24 pm »

great news!

AT · « **Reply #191 on:** April 24, 2015, 12:14:27 am »

That's great news, DanielT. I'm happy for you.

DANIELtakashi · « **Reply #192 on:** April 24, 2015, 03:17:50 am »

Leatherman and AT,

Thanks a lot.

Tonny2 · « **Reply #193 on:** April 24, 2015, 12:34:39 pm »

ojo Good for you amigo, good numbers, no more PCP worries for you, now relax and enjoy life....hugs arigato ojo

DANIELtakashi · « **Reply #194 on:** April 25, 2015, 05:43:39 am »

Quote from: Tonny2 on April 24, 2015, 12:34:39 pm

ojo Good for you amigo, good numbers, no more PCP worries for you, now relax and enjoy life....hugs arigato ojo

TONNY,

Thank you very much.
I hope you are doing well.

Wish you the best.

DANIELtakashi · « **Reply #195 on:** April 27, 2015, 02:21:20 am »

Hi.

From TOKYO. Actually I am in YOKOHAMA today.

Just a thought.
Have there been cases where the medication did not work with no particular reason, I mean the cases the patients were adherent to it but failed? Any thoughts from you?

Arigato.

leatherman · « **Reply #196 on:** April 27, 2015, 09:27:02 am »

Quote from: DANIELtakashi on April 27, 2015, 02:21:20 am

were adherent to it but failed

nope. and that's why in 1996 the world changed as people with HIV were able to get triple-drug therapy and the dying stopped. While there are some cases where therapy has seemed to fail for "no reason", nearly all failures are directly tied to non-adherence by the patient.

DANIELtakashi · « **Reply #197 on:** April 27, 2015, 09:35:26 am »

Leatherman,

Thank you.
Yap and nope sound very American to me.
Today I helped a couple to show the way in YOKOHAMA and...they came from
Kentucky. Do they pronounce five like faav?? The husband said faave days instead offive days.
It is fun for me to hear different regional accents.

DANIELtakashi · « **Reply #198 on:** April 27, 2015, 09:37:48 am »

Helped the couple showing the way...
My first English teacher EUNICE would yell at me.

DANIELtakashi · « **Reply #199 on:** May 06, 2015, 05:08:16 am »

Hi from TOKYO.

For the past few days, there has been a discussion about the relations between HIV and cancer in our local poz site. Do far I have not joined the heated discussion. One group says that the virus causes cancer and the other ssys that cancer is caused by the medication. Does anyone here have any thoughts about that? Arigato .

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Author Topic: PCP (Read 70956 times)