"HOPE DIES LAST"

[Tonny2]

        ojo       Thanks you...your reply made me feel good...cyber hug whereever you are, I really appreciate your kind words, I really need that sometines   ;p         ojo

[Tonny2]

       ojo         Hello everyone again...Well, it was time again to see Dracula and the ID doctor, I went yesterday and today I got my vampire's results...cd4=737, cd4%=32, VL wasn't ready yet but I expect it to be UD...It is amazing and sad a the same time, to me, why I couldn't get this kind of results when I was diagnosed, I wouldn't had lost some battle to hiv/aids, like being legally blind due to CMV Retinitis, but I'm greatful that I'm still alive, here, sharing with all of you my story...I never thought I would get these kind of numbers, two tears ago, I was around 300-400 for eight years, even when in 2006 I was sent home to wait for an OI to kill me because there was no more treatment where to chose from for me (resistance)...In January of 2007, started a new treatment, it wasn't aproved by the FDA then, a year later was approved, That treatment is PREZISTA/NORVIR, INTELENCE AND ISENTRESS, (after three months of taking this treatment, I was UD  for the first time since my dx in November 1994 and my cd4 went up from 36 to 350), almost eleven years after, the same treatment is still kicking the virus ass/ Isn't this greaat?...Even though, I'm not one of the lucky members of this hiv club whom are taking just ONR PILL A DAY, I'm very greatful to be arounnd and witness, the great changes there are on the treatment of hiv...I always think about the people who are not that lucky like us, people who are still taking multiple pills a day, (I take four, twice a day), and older medications,  good meds tho, and I think about people from other countries who have to drive around five hours away from their home, to find the closest hiv clinic where they are treat it and get their once supply medication, and they have to do this every month, get their med, (I get my three months supply in the mail), and I think about all of us LTS, what we went through all those initial years of pandemia and the amount of pills we had to take, toxic and, do you guys remember the taste of the NORVIR in liquid form?, YIKES, also, I think about all of those friend of ours, and all the people who didn't have any option to survive this virus, millon of people...So, let's all of us, newbies and not that new members, before we complain about"I have to take a pill a day for the rest of my life", how easy we have it and let's think about the people a mentioned previously...just a thought...best of luck to all of you...hugs    ojo

[Tonny2]

        ojo      hello everyone

One more year living with hiv/aids...23 years already, who would have thought i would live this long. i lost some battles to aids, but i have won, a bunch of nephews, nieces, even seven great nephews/nieces...OMG, i'm an old fart...just wantes to share the good news, there is TONNY2 for another 23 years more, ..hugs                     ojo

[Tonny2]

       ojo      hello everyone

last tuesday i went to see my id doctor and dracula, it was time for my new blood work test, the previos one was on september 5, 2017, where my cd4 were 737, cd4% 32 and vl-ud,,,,today, i got the results from tuesday's visit to the vampire, cd4 638, cd4%35, no viral load yet but i'm expecting a vl undetectable...my doctor can not believe these numbers, after he sent me home eleven years and a half ago, to wait for an oi to kill me because he told me, he couldn't do anything else for me due to my history of resistance to all the meds there were in those days. well, i guess, good things come to those who wait, to bad i didn't get these kind of results before i lost almost all my eyesight, as a good friend said to me earlier, at least you can still see something , he is right, not only can see, but i have been living overtime in this game called life, where i have been witnessed  the birth of so many nephews, nieces, even great nephews/nieces, i can not complain...on the other hand, i have made lots of good friend on this site, sharing experiences and getting to know lots of good people, fighters, people who want to live, but they need a kind word of support, a cyber hug, sometimes, a slap on the face with a white glove with the intention to make them understand, that life goes on even with a hiv diagnosis, just look at my story as proof of what i'm saying...best of luck to all...hugs                                                     ojo

[Archimexican]

Congrats! you are a great person and an inspiration to us all! thanks for all your advice and support, We love you man! Abrazos! 

[Tonny2]

       ojo        thanks compatriota, you are so kind...you will see that, the sooner you guys learn how to live with this virus, the better, so you can go back to live a pretty normal lives, well, there are somethings that we have to change, hut first let's learn how to live with the virus...hugs to everybody                                              ojo

[DANIELtakashi]

Hi, TONNY,

   
LONG TIME NO WRITNG AND I AM VERY SORRY.
I WILL CHECK IN MORE OFTEN FROM NOW.

[Chel]

Hello Tonny,
You have a great history. I'm really touched by this. 
It's inspiring!
Let's keep on fighting!

[Tonny2]

Hi, TONNY,

   
LONG TIME NO WRITNG AND I AM VERY SORRY.
I WILL CHECK IN MORE OFTEN FROM NOW.

      ojo     Hello my friend, how nice to hear from you again. It makes me happy to know that you finally learned how to live with the virus, so now, you have taken back control of your life and have been enjoying life again...welcome to your new normal, because there is a good life even wihen living with hiv...hugs amigo                                                                                                                                       ojo                           

[Tonny2]

Hello Tonny,
You have a great history. I'm really touched by this. 
It's inspiring!
Let's keep on fighting!

          ojo      hello there, thanks for replying and for your kind words...it has been a difficult and long jouney, but, here we are, still fighting, I have a mother to take care of and a great family and friends to keep giving them hard time, lol...welcome to the forum...hugs                                                                                ojo

[Tonny2]

     ojo.      Hello there.  Here I'm again, with my latest blood work results.

Cd4=725

Cd4%=31

VL= UD

If you read my original post, you will notice that I'm pretty lucky in having this kind of numbers...all that it takes is discipline in taking our meds as prescribed and a good attitude towards life...by the way, I've been taking the same treatment for the last twelve years and it's still kicking ass... just wanted to share the good news with all of you...hugs.                            ojo

[Tonny2]

      ojo.       Hi,  I visited Dracula last Tuesday results are in
Still UD after taking the same treatment for 12 years...cd4 631,% 31

[Mindless]

Happy for you Tonny!

Keep up with the good work.


Hugs

[DANIELtakashi]

HI TONNY,

  SORRY FOR MY LONG SILENCE.
I AM STILL HERE.

[Tonny2]

      ojo.        Hello everybody

Last Tuesday I visited Dracula, latest results: cd4=734, cd4%=33 and still UD, same treatment for the last 13 years...great news for someone who was told in the summer of 2006, "we can't do anything else for you"...here I'm, still. All it takes to defeat HIV is, discipline and a positive attitude...hugs.                             ojo

[Tonny2]

       ojo.      Hello everyone!

I will like to share with all of you my ladies lab results...cd4 674, still undetectable after taking the same treatment for the last 13 years...hugs

PS. Due to my poor vision, I dictated this post, if you notice an error please forgive me.

[baylav]

Hello Tonny it’s me here. Thanks for
Always being an inspiration to all. I remember when I was suicidal you checked up
On me regularly with words of Encouragements. God bless you for me. I have my life back thanks to adhering to your advice.

[Tonny2]

         ojo.        Hello everyone, hoping everyone is hanging in there...well, I’ve been dealing with a córnea infection for a long time, my doctor was considering stitching my eyelids close for three to four weeks blind, because, it’s the only eye functioning, and my right eye is blind. Anyway, it wasn’t necessary to go under the knife because the infección went away, we switched eye drops and, voila!, infection gone, so, my vision it’s getting better little by little which makes me happy...the other day, when I couldn’t see to well for the infection (I saw everything too foggy), how many thing have I gone through since my AIDS dx almost 26 years ago, and, I have decided to keep fighting, although, I should admit, that I was about to throw the towel after dealing with this córnea infection for almost a year, going to see the specialist every two weeks was driving me crazy (I have to ask someone to take me see the doctor an hour away from where I live), but, like I said before, as long as my mom doesn’t quit, I will not quit, she is fighting along my side for all these years, now she is 86 years old and has more energy than me. THANKS MOM!...well, we are still here, it hasn’t been easy but IM STILL ALIVE, almost blind but still breathing...hugs.                        ojo

[DANIELtakashi]

HELLO, TONNY.

THIS IS DANIEL.
SORRY FOR MY LONG SILENCE.  I AM DOING WELL.

[Fareast4116]

I just came across this and really, Tonny, you are one strong man. Where many (including me) wouldve given up, you fought and won!

[Tonny2]

         ojo.           @Fareast, thx for your reply, it hasn’t been easy, I’m sure that there are other LTS with stories more dramatic than mine, but, for some reason, we are still here sharing our stories so, the newly diagnosed see that there is hope...best of luck to you and you are not alone anymore.

@daniel, how nice to hear from you...hugs

[DANIELtakashi]

TONNY2,

THANK YOU FOR YOUR REPLY.
THE OLYMPIC GAMES 2020 TOKYO WAS CANCELLED AND THE CORONA ISSUE IS STILL GOING ON HERE BUT I AM DOING WELL.  TAKE CARE.

[Tonny2]

         ojo.        Hello everyone!

I just got my blood work results from my visit with Dracula last week...VL=UD, cd4=848, cd4%=34...it’s been 13 years  on a “salvage treatment “, it still kicking ass my combo and I’m very happy for it.

Also, I got news from my father, he is doing great, no need for oxigen, doctor said, he is sad and feels abandoned. Tomorrow we will have a video conference with him, hopefully he will feel better...hugs

[Tonny2]

            ojo.         Hello everyone!!

Celebrating one more  HIVERSARY, yes, 26 years of overtime and enjoying every minute of my life even though I have lost some battles during this journey but, I’m still alive...life goes on even after an hiv dx...hugs.                       ojo

[Tonny2]

                    ojo               Hello everyone, I hope everybody is doing fine, I am hanging in there. It is going to be a sad Christmas because the passing if my father almost two months ago due to coronavirus, but life goes on...wishing you all a MERRY CHRISTMAS...Hugs                                                             ojo

[crisbarcelona]

TONNY2, THANKS A LOT FOR YOUR MESSAGE. YOU ALWAYS ARE HERE GIVING SUPORT AND ADVICES.
SORRY FOR YOUR FATHER....
MERRY CHRISTMAS FOR EVERYVODY.

[Tonny2]

        ojo.      Hello Chris!!...thanks for your reply and your kind words I really appreciate you reading me...remember that before I die I have to go to your country and I will need someone to show me around, vale?...hugs.                                    ojo

[Tonny2]

             ojo.         Hello again!!


Well, it’s that time of the year, visit to the ID doctor and Dracula, still good news...cd4=616, down from 767 (no change), cd4%=37, up from 33, still UD...so, this is to give newly exes members that there is light at the end of the tunnel all we need to do is being disciplined taking the meds and a good attitude towards life, we all know how difficult reviewing an hiv dx, but, that’s why we are here for, sharing our stories to try to make you newly diagnosed members make the día gestion of the bad news easier...HOPE DIES LAST, I’m living proof of that...best wishes to all...hugs

[Tonny2]

           ojo.           Hello everyone!!!

I knew that you may get in trouble with the justice system if you do not disclose your hiv positive to your sexual partner but, I never thought that the punishment for not doing it was to harsh. Yesterday I accompany a friend of mine to the hiv clinic for his six months appointment, I was talking to the nurse practitioner and for some reason we started talking about the “disclosure thing”, she told me that, they know of two men and two women, were in jail because their sexual partners found out about their hiv positive status, she also told me, that they we’re sentenced to EIGHT YEARS in prison for not disclosing…WOW!!!, I’m impressed for the harsh punishment. What say you?…oh!, I live in Ohio.                                                                                    ojo

[BubbaPat]

Howdy my little sunshine!!

Sorry to hear the doctors have given up.  Glad you haven't thought.
Sunshine... you're gonna make those kiddos work for their degrees, I know you are.
Your energy brightens all of our days and makes us want to give some back to you.
I too had a putz for a doctor a few times.  One even told my husband to call my family and make arrangements.  Well.... 19 years later, I'm still here.  My life my not be perfect but I muddle through. 
YOU young man, are a part of my inspiration!

BIG HUGE Bubba hugs from Texas kiddo!!
I'll cross my fingers, say a prayer, send positive energy, maybe even do a little dance to see if I get the spirits in the universe to help.

Bubba hugs sunshine!!
I know we'll talk again soon.

[Tonny2]

         ojo.          @bubbapat, how nice to hear from you, I feel your love and I appreciate your beautiful message…I will be ok, I, like you, was told I would live two more years after my AIDS dx, twenty seven years later, I’m here reading your kind words.

I hope you are doing ok and I’m very happy to “hear” from you my sunshine…hugs and kisses on your way to Texas.                                                                           ojo

[Tonny2]

M.      ojo.       Hello everyone!

I have a dilema and I would love your feedback .

If you have read my story you know that I’m legally blind and I’m blind in of my right eye since 1999. Anyway, this blind eye sometimes gets painful, before, the pain wasn’t that often, but lately, it’s giving me so much trouble, pretty’ painful, worse than a toothache. The solution is getting rid of it, removing it. As you may understand, it’s a difficult sedición to make, well, for me, it’s difficult that’s why I’m counting on your advices to help me make the sedición to have it removed. If I do it, I have the option of wearing a patch (becoming a pirate) or wearing a prosthesis. HELP!!…thx in advance

[Grasshopper]

Hola Tonny2,

Since the eye is of no use anymore and it causes constant pain and discomfort, If it were me, I would have it removed and replaced with a prosthesis.

My aunt has a degenerative eye disease and has gone 100% blind in one eye, and 95% in her other eye. The 100% blind eye has been causing her immense pain and discomfort and now an infection of the tear duct. It was treated twice with antibiotics, and a month ago the surgeon performed surgery through her nostril to unclog the tear duct. The surgeon is anticipating that the tear duct will clog again, and recommended removal of the eye, and replacing it with a prosthetic eye. She just turned 70 and is very conscious about her appearance, and is reluctant of having the eye removed. I told her to imagine the permanent relieve of all the discomfort and pain she's been having and the dangers of another infection that could easily spread to her brain.

Good luck and strength with whatever you decide/choose to do.

[Tonny2]

         ojo.      @grasshopper, thanks for your feedback. I think I’m like your aunt, it is difficult to look “different”, besides that, I wonder if I were to have it removed, I wonder if I still will feel the pain, the doctor can not be sure, you know, sometimes even if you get a leg ampúte, you will still feel it. Anyway, I guess I have to make up my mind if I don’t want to keep dealing with one more pain, I live with pain 24/7 (neuropathy) and I don’t take anything for it either…thanks again and I will let you know if I go under the knive. I got the surgeon’s phone number, I will call him so he can answer all my doubts…hugs.                                                        pjo                   

[Grasshopper]

Make sure you ask the surgeon about the phantom pain syndromeand weigh the pros and cons. To be honest I didn't even consider that posibility, or knew that it even possible.

https://www.aao.org/eye-health/news/phantom-eye-syndrome-after-surgery

[DANIELtakashi]

TONNY,

This is Daniel.  I am sorry I did not get connected for almost half a year.
I am glad to see your name.

[Tonny2]

         ojo.       @Grasshopper, thanks i will make sure to ask the right questions. Although, I must confess, I am worry because part of I being blind is due to bad surgeries, but, I have nothing to lose other than the eye anyway. Lol


@Danieltakashy my favorite Japanese friend, hehe, the only Japanese I “know”. It’s always nice to hear from you specially that you are doing great after all these years but, I beat you, I’ve been hiv positive 20 years more than you, hehe…you are a strong man and the reason I’m still here, supporting everybody that wants to be supported, I think I’ve been participating on these forums (Spanish too) since 2009, I will have to check that.

Again, so nice to hear from you. Please keep in touch…hugs.        Sayynara

[Bucklandbury]

This thread is wonderful to read! I thank you very much for it, and I wish us all much good health.

[Tonny2]

This thread is wonderful to read! I thank you very much for it, and I wish us all much good health.

             ojo.          Hello there!!, thx for reading my thread, we are here, sharing our experiences so others can learn something by reading them…good luck to you!!

[Tonny2]

         ojo.           Hello my friends!!!, well, it’s time for my colonoscopy, my older brother died of Colon cancer eight years ago and now, I have to be checked, every five year…the procedure itself is quick and easy, the problems is the liquid diet you have to follow to clean your intestines before your test, you have to drink some solution that will keep you on the “throne” all day long, ouch!!…well, I will let you know the results of such test…wish me luck, please…hugs

[Tonny2]

        ojo.          Hi!, well, everything went fine with my colonoscopy, next one in five years…hugs

[Tonny2]

        ojo.         Hello everyone!!! Hoping everybody are doing good.

Question: anyone, especially those whom took prednisone sometime, any problem with AVASCULAR NECROSIS?. I was diagnosed with this condition, it happens in the hips and rarely in the shoulders, I have it in my shoulders, both of them which it makes it even more rare. I will need shoulder replacement as my pain gets worse…anyone with the same problem?, I will appreciate your feedback…thx.                                     ojo

[Tonny2]

           ojo.               Hi everyone!!

It was time to visit Drácula again, also, my ID doctor and cornea specialist. Well, with the cornea specialist I got bad news, it’s time for a córnea transplantation which it doesn’t guarantee that my vision will get better so, I’m not doing surgery.

With Dracula and my ID doctor, still UD after 14 years on same combo, 4x2…cd4=598, %=32, no bad.

I’ve been having some pain on my ribs, left side, the doctor sent me for an X-ray, it shows a nodule, I didn’t know it was there, radiologist compared it with an xray done in 2015, he sees no changes but he wants to repeat it soon…latest update after 27 years of living with hiv/AIDS…best.                                                    ojo

[Grasshopper]

Hola,

How about the other eye that was/is bothering you ?

Talked the other day with my Aunt about her "dead" eye and it's causing her a lot of discomfort. She is still very reluctant about having it removed and replaced with a ocular prosthesis.

[Tonny2]

        ojo.          Hi everyone!!

@geasshopper, thx for your reply…I’m just like your aunt, although, the pain used to be  sporadic, now, it’s Moore frecuéntate and painfully, which is making me think seriously to get rid of my right eye, the blind one, even it has gotten smaller and people can tell there is something wrong with it…I will let you know when I have the “cojones” de do the surgery, if I knew I to upload a picture in here, I’d show it in here (my beautiful brown eye in a glass jar) lol…hugs for you and your aunt

[Grasshopper]

 a good sense of humor is always your best friend.....glass jar.....

If you manage to live another 100 years, maybe by then they would have figured out a way to grow a new eye ;-)

[Tonny2]

a good sense of humor is always your best friend.....glass jar.....

If you manage to live another 100 years, maybe by then they would have figured out a way to grow a new eye ;-)

           ojo.          Hi grasshopper, thanks for your reply…it would be nice to have a new eye, as a matter of fact, no being able to drive, losing my independence, it’s been the worse news of all this journey, it didn’t hurt me found out I was diagnosed with aids, not even when the doctor told me “you may live just two more years” after my dx, but, when I started losing my vision, I started to feel hopeless, lost. I lost the vision of my right eye first, I kept working, nobody at work knew I was blind of that eye, then, I starting having problems with the other eye (no peripheral vision) and then, cornea problems, I see everything blurry, it was the end of my day ndependence, no more driving. ;(…and some of my blindness is due to CMV RETINITIS, and the other part due to medical errors, it is what it is…my last day at work was on augusto 21 of the year 2000, it was a Saturday…I remember having gone to renew my drive’s license and I couldn’t pass the eye examination test that, who ever did the test felt so sorry for me that instead of giving me a DL, he gave me one of those handicapped cards. Maybe, if I would have gotten the DL, maybe, I would have kept working, maybe no, it was dangerous for me and others me driving…well, I’m still alive, living with lots of problems, physical, but, still enjoying life, even, last week, I rode 6 roller coaster at Cedar Point and visited five hunted houses, needless to say that I didn’t get spoook because I couldn’t see lol…hugs

[Tonny2]

       ojo.           Hello everyone!!!…hoping everyone is doing fine.

Well, after  26 years of taking meds, finally I got my first broken bone (in my foot, not a toe) due to my bones being brittles for my poor bone density, even though I didn’t take tenofovir for a long time (acidosis). My bone has healed by itself but, I was limping for a while, now I have plantar fascitis, I’m wearing a boot, uncomfortable…I guess I can’t complaint after living 14 years of overtime, 2006 I was sent home to wait for an OÍ to kill me as I was resistance to all medications then…I will be fine, I am going back to see the specialist in two weeks…still having cornea problems but, I’m still able to be in here, as for my painful blind eye, I haven’t decided to get rid of it, I wonder if I would look nice as a pirate, lol…no matter what the med’s side effects might be in the future, it’s better to take ARVs because no doing it for being worried about the long term side effects of the meds means DEATH…let’s worry when we have something to worry about in the future, when something goes wrong like in my case, we take care of it, as I’m doing it right now, COMPRENDE?…hugs


Ps. English is my second language, I hope you understand my post

[Tonny2]

          ojo.         Hi !…happy  HIVersary to me!!!…today, November 29, 27 years ago, I was dying, PCP, AIDS only 20 cd4. I was told that I would live two more years. 27 years later, I’m still here sharing with you that there is hope…yes, there’s life after an hiv diagnosis…I couldn’t be here, alive, if wouldn’t be for my mother whom has been fighting with me since the beginning of this awful journey, especially the first five years after my dx…as I mentioned before in here, one of many times I was admitted to the hospital, one of the nurses of the hospital, whom I knew her for so many times she took care of me, she asked me, “tonny2, wouldn’t be easier to just let go”?, I responded, yes, it might be easier just to quit fighting but, I told her, “do you see that lady sitting on the chair in the corner of my hospital room”?, she said, “yes”, I responded, “well, she is my mother, when she stop fighting I will stop fighting”, she, my mother, was 60 years old then, now, she is 87 years old and still, strong and determined, she still goes with me to all my doctor’s appointments. She is my inspiration and my strength to carry on…again, happy 27 HIVersary to me…hugs

[crisbarcelona]

Hello, Tonny2

I want to tell you only this: congratulations and wonderfull.
thanks for everything