PCP

[DANIELtakashi]

Greetings from Japan.
I was diagnosed pos. having  PCP pneumonia in January  this year.
My viral load then was 60 and having started medication, it is now 300.
My  question is whether ART or HAART is effetive enough. And I  am worried because I  came to the
Stage of AIDS.   Will my life be shorter than that of those who were found just HIV pos.?
Are  there many who have lived long after  having PCP ?  Thank you .

[Jeff G]

Welcome to the forums . I had PCP and low cd4 counts and recovered from it ... Its been over 30 years ago since I had pcp and I am going strong and plan on living a long life unless I get hit by a bus or something . I'm not special so if I can do this you can too .

[DANIELtakashi]

Thank you, JEFF  san. Arigato.
It is ten p.m here.

[zach]

Ohayou Daniel!

it's morning here in the States

I'm pretty sure in your first post you meant that your CD4 count started at 60, and has climbed to 300 on meds.

If that is was your meaning... that is GREAT news!

CD4 and VL (viral load) should be going in opposite directions. A CD4 count of 300 is solid and you can feel very good about that. You are winning.

Your viral load hopefully has gone down on meds.

I have also had PCP. Nothing fun about it, but it can be beaten. I recovered, and I do not plan on dying from AIDS.

Welcome to the boards. Which island do you live on?

[DANIELtakashi]

Zach san.
Yes. I meant CD 4, not viral load.  Gomen and arigato.
Thank you.

[DANIELtakashi]

Zach san.
I am in HONSHU island.  Tokyo.

[zach]

no need to apologize, just trying to clarify

you'll very quickly exhaust my language skills 

I've worked in aviation for many years, spent a couple weeks setting up a maintenance shop at Narita. It was awesome, I got lost every time I tried to go anywhere. I hope to return one day.

I would love to complete the Shikoku.

[DANIELtakashi]

Zach, 
Thank you.   I will try to keep good communication  with my doctor.
  I used to fly on NORTHWEST from NARITA but now on UNITED  or DELTA .

[leatherman]

I just celebrated my 31st year of living with HIV. My lowest cd4 count was 5. after all the years my normal range of cd4s is still only between 300-325. But it has been 18 yrs since I was last in the hospital with PCP (I have been hospitalized near death with PCP twice). These modern meds are awesome!

Clearly your numbers are already recovering faster and should end up much higher yet, so you really have no worry about PCP or a shortened life. Stay on your meds, work hard, and save up for a happy, healthy retirement/old age.

[DANIELtakashi]

Leatherman,
Thank you very much for your encouraging words.
I have been mentally down since I was discharged from the hospital in January  but now it is time to stand up. ありがとうございました！

[DANIELtakashi]

One more question.   Are we people  with AIDS  more prone to
Some types of cancer?
Thank you .

[Almost2late]

Yes, I know lymphoma and kaposi sarcoma are a couple.. don't know about others.

[DANIELtakashi]

Almost 2late,
Hi.  Thank you.
Greetings from Japan .

[Almost2late]

Your welcome Daniel.. Try and not worry about cancers but be vigilant of any unusual symptoms and pains and report them to your doctor... Stressing too much will not help your health but taking your meds and following the doctors advise will .

Greetings to you also from Florida

[DANIELtakashi]

Once again, thank you, everyone, for your comments.
We do not have sites like this in Japan  and I reallly appreciate its existence.  We in general still have an old image of this disease and tend to feel hopeless.
Now I am beginning to see I  can live.

[Jeff G]

Once again, thank you, everyone, for your comments.
We do not have sites like this in Japan  and I reallly appreciate its existence.  We in general still have an old image of this disease and tend to feel hopeless.
Now I am beginning to see I  can live.

You can do more than just live you can thrive and live a rich full life . Plan your life like you are going to live forever .

[DANIELtakashi]

Reading the comments from different people, I  have the impression that doctors in the USA  are more friendly and give you a lot of info.  Ours here are in general very quiet.

I got out of the hospital ten onths ago.  Could.anyone tell me what form of physical exercise my body is ready for?  Just walking and a bit of running?  How about swimming? Arigato .

[tednlou2]

Reading the comments from different people, I  have the impression that doctors in the USA  are more friendly and give you a lot of info.  Ours here are in general very quiet.

I got out of the hospital ten onths ago.  Could.anyone tell me what form of physical exercise my body is ready for?  Just walking and a bit of running?  How about swimming? Arigato .

I have no idea how doctors differ between countries and cultures.  I suspect they are likely to be similar.  I would say 75% of the doctors I've had are very dry and don't speak much.  Many here complain about many docs not having a good bedside manner.  I have a doc in the family.  He is very dry.  He often comes off as not being friendly, even though I know he doesn't mean to come off that way. 

As for info, I have learned just about everything here, on other sites, and reading info-- like the Lessons part of this site.  I will discuss many things with my doctor, and I get a blank stare.  He will say, "I haven't heard that."  I should point out that I think my doctor is probably different from many.  He works at the HIV clinic only on Monday afternoons.  It just seems like some extra cash for him.  My point is I would bet most of us here have learn more on our own, than we have from our docs.  I could be wrong. 

About the exercise, I don't know what your current health situation is.  I would assume you've recovered from PCP?  It seems like your body would tell you what you can do.  How do you feel?  Do you get fatigued easily?  I assume you walk there, as Tokyo is similar to NYC.  Do you get winded and exhausted?  If you haven't done any running since being ill, then you could run around the block and see how that goes.

[DANIELtakashi]

I am new to this forum and am participating from Japan.
I got PCP earlier this year.  I am on medication and physically OK now.  I njust blame myself for having caught this disease and feel depressed.   My issue is how i can get back future hope.    Any psychologist or psychiatrist does not help.   All I  think about is that I  might get other complications along the way and die.   I would like advice , especially from long term people.  Thank you.

[Almost2late]

Dan, I'm not long term, I'm like you, dx in january with 13 cd4s, now 125, not great but I'm still here, I still work and I will get better so will you.. Do you have anyone to talk to in japan like family or friends?

[DANIELtakashi]

Dan, I'm not long term, I'm like you, dx in january with 13 cd4s, now 125, not great but I'm still here, I still work and I will get better so will you.. Do you have anyone to talk to in japan like family or friends?

Hi. My family knows and two American friends living here do.
Do you think docs are telling the truth?  My doc says it is a chronic disease  now.  Is it the same in America?  I have rash on my head and my hair gets greasy, which drives me nuts.

[Almost2late]

Yes, they are telling the truth, its the same here in the usa.. I have issues also my face looks a little swollen by the ears but these are little things compared to the pcp .. You should try not to worry, it doesn't help.. Find the things you like to do and do them, I love cycling so I always find some time to ride my bike everyday except when it rains, this relieves stress for me and I'm grateful to be able to do this.. Find a friend, hug them, cry on their shoulder if you must, this also helps but remember life goes on and we are very fortunate... Tell you doctor about the rash, maybe he can give you somthing for it.

[DANIELtakashi]

Oh. How difficult it is to live now!  Have to find a way.

[DANIELtakashi]

tendnlou2

   Thank you for your comment.
I am a little relieved to know that doctors say the same thing.  Maybe I should believe what my doc says and trust him.  Thank you.

[Jeff G]

I moved your new thread into your old one because there are no need to have 3 threads on the same subject . Thanks for your cooperation

[DANIELtakashi]

Jeff,

Now it is Sunday morning here in Asia.   I thank you everyone, for your comments and
for welcoming me so warmly.   There is no such great site in my country and I really appreciate its existence.  Thank you.

   Sorry for going here ad there - I did know the system well.

[Jeff G]

You are most welcome and I am happy you found us .

[DANIELtakashi]

As is mentioned in my introduction I am joining from Japan. Good morning.  I went to.the hospital this morning for a regular check. My doc said I can live the next thirty years. I am fifty and found positive having PCP.  It is good news but can I believe  it?   Is the medication effective for everyone?
I would like to hear your ideas.  Thank you .

[mecch]

Why do you keep asking the same question over and over.  What will it take for you to accept the answer given to you by us and by your doctor?  HIV medication is effective for anyone when he is adherent.   You live in a rich country with great health care. You need to have some faith and relax a little bit.

[Tonny2]

As is mentioned in my introduction I am joining from Japan. Good morning.  I went to.the hospital this morning for a regular check. My doc said I can live the next thirty years. I am fifty and found positive having PCP.  It is good news but can I believe  it?   Is the medication effective for everyone?
I would like to hear your ideas.  Thank you .

     ojo     Hi Daniel....I just celebrated last week, 20 years of being diagnosed with AIDS, with a cd4 of 20, started treatment in Junuary 1995, ntreatment failure for five years, like you, I got PCP when dx, I got three more episodes of PCP during those five years of treatment failure, I was 32 years old when I was dx, now I'm 52...so, if you take your meds the way they are prescribed, you will be 70 if you use my same escenario, right now, your meds seem to be working...please relax and keep living your life, dnjoy it...I hope this helps you to get a peace of mind, I'm mexican, I think for a japanese guy like you, the meds will work too...hugs   ojo

[Almost2late]

Hello Daniel, I see you are having a hard time believing when people tell you your going to be fine and live a normal life.. Maybe you should seek out others in you area who are HIV positive like yourself.. I see there are support groups in Tokyo.. Hope this helps..
http://tokyo.angloinfo.com/information/healthcare/support-groups/

[DANIELtakashi]

Good morning from TOKYO Japan.  Sorry but I  did not anseer your messages sooner. Thank you for your kindness to me, everyone.   Now I feel better mentally.
Arigato .ありがとうございます！

[DANIELtakashi]

Hi from TOKYO again.   
I joined a local group of hiv positive people in Japan  the other day. I communicatef with several people.  In our country the info is limited and many people want to know if the present med is all that we can expect or there will be more in the future.   Does anyone have any ideas?  Thank you .

[Jeff G]

Here is a link to the current medications . You can also search in our treatment section .
http://www.aidsmeds.com/list.shtml

[leatherman]

Hey Jeff , don't forget to point out the whole LESSONS section (it's under TREATMENT in the dark gray menubar up above on this page). Nearly everything anybody could ask about HIV is somewhere in those lessons. 

Read through some of those lessons Daniel.  Being a more knowledgeable patient will not only make you a healthier person; but a happier person too. And being  happier can make you healthier, so it's a win-win situation to learn some more about HIV. There's a LESSON INDEX menu on the right side of that page, if you want to jump around some in the topics.

[DANIELtakashi]

Thank you , Jeff  and leatherman.
ありがとう！

[DANIELtakashi]

Good morning from Tokyo.
Now it is noon here.   It is the next three hours that most of the transpacific flights from here for the US leave Tokyo and I wish I could get on one of them to fly there today!

Thank you all for answering my questions and leaving comments.   Tomorrow I will visit the hospital and have my CD4 and VL checked after two months.   Before that I would like to know one thing.    My CD 4 has risen from 60 to 280 - 300 for the past ten months.   One article I have just read says that the cells that have lost their memories are not strong enough to combat OI and that makes me feel anxious.    Is it the common idea?    THANKS.   

[mecch]

CD4 above 200 is protective. Antibiotics are stopped over 200.
It is true that a rebuilt CD4 system is not the same as the original pre-infection. But it still works.  Anyway, its the one you have now. 
If you had CD4 such as ABCDEFGHI etc.
Then an infection can permanently wipe out some of these fighters, say C E G etc.  When your system rebuilds it doubles up on the remaining ones, to become ABBDDFFHI etc.  Thats a rough model.  Im not sure of the technicalities as to how the remaining assortment manages to fight diseases but the final sum is it does.

[DANIELtakashi]

mecch,

  What a clear explanation!
Thank you very much.  I have gotten lots of info so far.

[mecch]

That the explanation my first ID doc gave me.  I hope its accurate enough.
I stopped reading about the technicalities of HIV a few months after my diagnosis.

Its a bit of a pity you can't get more feedback from your Japanese docs. Don't hesitate to post such things here because someone should have a good answer eventually.

Docs in Switzerland don't have a long time to spend chatting but they do their best and there isn't much power-distance in the relation, here, so the exchange is more professional to professional and quite frank and easy.  But they have to bill by minutes and have to keep the patients moving through on schedule so it takes awhile to really add up contact hours with one's doc. 

[DANIELtakashi]

meech,

   Thanks.   Danke Schon!    Ich freue mich!
   Yes, I will keep track of this site.

[mecch]

I would guess there is some concern that rebuilt immune systems without enough variety might show their weaknesses on such things as cancer as the years roll on with a controlled HIV infection.  But we are stuck with what we got after diagnosis and treatment. Theres a lot one can do to minimise. I would guess its important what we eat - the quality. And exercise and mental health. Supposedly its very important for all aging men (poz or neg) to keep having orgasms, this can really mean a lot for longevity and fighting diseases. Also the regular screenings that a good health access should make available - colon, anal, skin, etc.

[DANIELtakashi]

meech,

Thank you much.

[DANIELtakashi]

I have just come back from the hospital.
My CD 4 was at 290 and my VL was at 20 just.    My CD4 does not go over 300 easily but my doctor said that there was no problem.   I told my doc that I would really need to live for the next ten years so that I could take care of my parents and he said that
I would.    My hospital is in the east of Tokyo.   if you have been to Tokyo, you might know that it is near the Edo Museum and the Sumo Stadium.   Thank you for your help all the time.

[Tonny2]

I have just come back from the hospital.
My CD 4 was at 290 and my VL was at 20 just.    My CD4 does not go over 300 easily but my doctor said that there was no problem.   I told my doc that I would really need to live for the next ten years so that I could take care of my parents and he said that
I would.    My hospital is in the east of Tokyo.   if you have been to Tokyo, you might know that it is near the Edo Museum and the Sumo Stadium.   Thank you for your help all the time.

         ojo     great Daniel, good numbers, don't listen to your doctor, you will live mor ever, just take care of you and you will be fine...congrats again....arigato     ojo

[DANIELtakashi]

Tonny 2

Thank you .

[DANIELtakashi]

Hi,everyone.   We are having cold weather in Japan.   
As I  mentioned in my previous message,  my CD 4 count was 290 yesterday.  Now my head skin and face are greasy.   Is it because  of the medication or is it because my immune level is still low?
Anyone there that  had the same problem?   I forgot to ask my doc.
Thanks.

[DANIELtakashi]

Greetings from TOKYO again.
I am not supposed to write on the LT FORUM, so I am here again.  The HAAART  started in 1996 here, too and almost two decades have passed.  People say that the advancement has been awesome.  What is the prospect for the next years in the USA in terms of the medical debelopment?
My doc only says that whatwe have now is what can be the best.   Please keep me updated if you have any info.  Thanks.
DANIEL

[Jeff G]

Here is some reading for you . http://www.poz.com/archive/currentNews_1.shtml

[DANIELtakashi]

Thank you, Jeff.  I have read some of the articles.