Author Topic: CONFUSED AND FEELIN FRUSTRATED (Read 25141 times)

Tonny2 · « **on:** December 15, 2014, 08:37:33 pm »

OJO hI FAMILY POZ

I just saw a cornea specialist here in my hometown (for a third opinion), he said that even if I were to have a cornea transplantation, I won't be able to see well anyway, I'm trying to talk to someone in the Eye institue in Baltimoe and Miami, but they want me to go and seem them, without even telling me if they do the procedure I need, I can not afford just going there for them to tell me, "I'm sorry, we do't do that procedure here", grrrrr...we'll see what happens...well, tomorrow, I will see my ID doctor and the vampire, wish me luck family, I really need to get good news, because the situation with my eyes is getting into me...ah, no more antidepressant for me...hugs ojo

initforlife · « **Reply #1 on:** December 15, 2014, 08:57:35 pm »

Hugs Tonny2 I hope all goes well tomorrow and that you find out some good news on your eyes!

Tonny2 · « **Reply #2 on:** December 15, 2014, 10:51:51 pm »

Quote from: initforlife on December 15, 2014, 08:57:35 pm

Hugs Tonny2 I hope all goes well tomorrow and that you find out some good news on your eyes!
[/q
uote]

ojo Hola initforlife...thanks for reading and replying...I hope and my numbers stay at least the same...I will keep you posted, tho, I will know the results in one weel, by then I will be in Mexico, poor me, lol on vacations...thanks again...hugs ojo

stuka · « **Reply #3 on:** December 16, 2014, 12:00:27 am »

tonny, this sounds unusual ... why can't they schedule a call before you go down there? I hope your numbers are good ... man, I know your eye has been causing you a lot of grief lately, i just wish they can fix it so we don't have to see our buddy so depressed.

Tonny2 · « **Reply #4 on:** December 16, 2014, 07:35:11 am »

Quote from: stuka on December 16, 2014, 12:00:27 am

tonny, this sounds unusual ... why can't they schedule a call before you go down there? I hope your numbers are good ... man, I know your eye has been causing you a lot of grief lately, i just wish they can fix it so we don't have to see our buddy so depressed.
[/quot

ojo Hi stuka,...I don't understan why this people (Baltimor, Miami) don't let me talk to the specialist staff, so they can let me know all I need to know, before setting the appoinment...I supposed they just don't want to deal with other stuff....anyway, I will keep giving them them hard time, lol...thanks buddy, I hope to get good numbers too and hope my meds are still kicking HIV's butt, it's been seven years already, with same combo and UD.....hugs, lot of them...did you read?, I followed your advicen no more anti-depressant for me, I'm doing fine ojo

2tcells · « **Reply #5 on:** December 16, 2014, 03:58:38 pm »

a friend of mine got this done to his eye 2 times because the first cornea his body rejected. he still cant see good from that eye. before getting it done he could just see light and dark, now he can see blurry colors and has to wear dark glasses in the sun. he is not poz. it didn't fix the pain in his eye either so I don't know how much better that is than before

Jeff G · « **Reply #6 on:** December 16, 2014, 04:39:06 pm »

Hi Tonny … once again I have little to offer you except to let you know I am thinking about you and wish along with you that you may regain your sight one day .

lifejourney · « **Reply #7 on:** December 16, 2014, 07:07:25 pm »

Hi there Tonny2,

I'm giving you a big virtual bear hug. I wish you all the luck in the world getting your eye sorted out quickly and effectively.

I want you to know how much I appreciate you being one the first to reach out to me on my "Just Diagnosed" post. You read my pages of self absorbed ramblings despite the difficulty with your eye. You're my hero!

xoxo

LJ

Tonny2 · « **Reply #8 on:** December 16, 2014, 08:05:49 pm »

ojo @2tcells...thanks buddy for the info, but it's so confusing when a doctor tells you something and others tell a different story, that's why I get frustrated...but I will keep fightting, let's "see" who gets tired first, I'm almost blind, but I can still talk....hey buddy, I saw my doc today, I will let you know my bloodwork result in one weel, tho, I will be suffering with the nice weather of Mexico, laying by the beach and having a beer, I don't want to know anything else about doctors until I come back from my vacations...thanks for replying and you know that you are always on my mind....hugs ojo

ojo @Jeff, thanks Jeff, you are my favorite guy in here, always supportive and helpful...I really apprecite you always replying, it means a lot to me...hugs

ojo lifejourney...oh mzn, you mzde me cry, thanks for your kind words, just trying to share my experineces and try to support you all...I wish English were my first language to espress better my feelings, but I guess, even with my poor skills (English) you get what I'm trying to say....thanks again, and you can consider me your friend and I'll be here if you need a cyber hug.......ojo

Wade · « **Reply #9 on:** December 28, 2014, 01:58:29 pm »

Hi Tony,
I just saw this, sorry your eye issue is no closer to getting resolved.
I have very poor vision out of my transplanted cornea, but no pain or
sensitivity to light anymore. Corrective lens are strong and hard to get used to
but they do help.

I don't understand why they are telling you this. Took me about three years
to finally get mine. keep on pushing for treatment and answers ! PM me again if you like. Good luck with the vampire !

Be Well My Friend, Wade

Tonny2 · « **Reply #10 on:** December 28, 2014, 03:32:49 pm »

Quote from: bubba53 on December 28, 2014, 01:58:29 pm

Hi Tony,
I just saw this, sorry your eye issue is no closer to getting resolved.
I have very poor vision out of my transplanted cornea, but no pain or
sensitivity to light anymore. Corrective lens are strong and hard to get used to
but they do help.

I don't understand why they are telling you this. Took me about three years
to finally get mine. keep on pushing for treatment and answers ! PM me again if you like. Good luck with the vampire !

Be Well My Friend, Wade

ojo Hi buddy, thanks a lot for reading me and advicing me....like I said, it is frustrating, every doctor confuses me, have different opinions...my cornea specialist retired, so now I have to see a new one which I don't like the guy, too many patients poor quality of service...but I promise you, I will keep fightting and looking for help...I really appreciate tour concerns and help....hugs ojo

René

Tonny2 · « **Reply #11 on:** January 10, 2015, 02:13:50 pm »

ojo Hi everyone, Happy new year to all!!!...after suffering for 21 days in Mexico, finally came back home (Ohio), and I got my blood work results from my visit to Dracula the 16 of December...my soldiers are still kicking ass 498 down from 538, and my VL still undetectable..next January 15, will be exactly eight years, since I started this treatment, which saved my life because my doctor told me there was nothing else I could take then (2006), so, I'm still here thanks to PREZISTA/NORVIR, INTELENCE AND ISENTRESS, isn't it great?...about my cornea problems, still in limbo, I will keep looking for help, thankfully, my vision hasn't changed...about my pains, ouch!!!, I don't know what to do anymore, maybe I will try the procedure, OMG!!, I keep forgetting the name of it, Miss Phil help!!!....hugs ojo

Fisher · « **Reply #12 on:** January 11, 2015, 04:20:56 pm »

Big bear hug for you...

Tonny2 · « **Reply #13 on:** January 11, 2015, 08:10:30 pm »

ojo thanks Fisher...a big hug on your way too ojo

DANIELtakashi · « **Reply #14 on:** January 21, 2015, 05:41:40 am »

I am taking this opportunity to thank you for your constant help.
Arigato .

Tonny2 · « **Reply #15 on:** May 21, 2015, 10:41:03 am »

ojo Hello everyone....uptade about my eye problems...I went to see a specialist (retina) for a third opinion, about the reasons of my awful eye pain (right eye, blind)...he told me:
1.- It might be imflamation, increase eye drops from twice a day, to four times a day.
2.- if the eye drops don't work, he can try killing the nerve with alcohol injections (alcohol block), never heard about, have to reaserch it
3.- I will have to remove my blind eye
I think, eventually, I will have to get rid of my blind eye, because it is already getting smaller, the doctor said, that it will shrink until it will be completly shut, I just hope the pain stops, it's driving me crazy (fortunally, the pain it is not that often).
My cornea of my left eye, it is getting worse, my ID doctor still does not want me to have the stem cell transplantation surgery, the immuno-suppressant treatment, to harsh for the rest of my body (organs), grrrr
The good news, my recent number have not changed, cd4=578, cd4%=26, VL=UD after eight years taking the same treatment, these are great news, because I'm resistance to every med on the market.
Hoping you all are doing great.....hugs ojo

PS, my parrot is getting old!!!....bear with me, English is my second language

DANIELtakashi · « **Reply #16 on:** May 21, 2015, 10:58:32 am »

Hi,
Thank you for your message.
Sorry l did not leave my message in my PCP thread-l was in a hurry trying to reach Andy and Joe.
I hope you are ok.

Joe K · « **Reply #17 on:** May 21, 2015, 02:30:00 pm »

HEY TONNY,

I HOPE YOU FIND SOME RELIEF FOR YOUR EYESIGHT ISSUES, AS CONSTANT PAIN CAN EAT AT YOUR VERY BEING. THAT BEING SAID, I HAVE THE GREATEST RESPECT FOR YOUR ATTITUDE AND DETERMINATION IN RESOLVING YOUR ISSUES, WHILE REMAINING AN INCREDIBLE PERSON. I HAVE EXPERIENCED PERIODS OF INTENSE PAIN AND I KNOW HOW THAT CAN WEAR YOU DOWN. SOMEHOW, YOU NOT ONLY LIVE WITH YOUR STRUGGLES, BUT YOU RADIATE A REAL SENSE OF SELF CONTROL AND EMPATHY FOR OTHERS.

IT IS A TRAIT THAT WILL SERVE YOU WELL IN LIFE AND ONE WHICH I ADMIRE YOU FOR MAINTAINING, GIVEN YOUR CHALLENGES.

JOE

MODIFIED SO TONNY CAN ACTUALLY READ WHAT I WROTE.

Tonny2 · « **Reply #18 on:** May 21, 2015, 05:18:15 pm »

Quote from: Joe K on May 21, 2015, 02:30:00 pm

Hey Tonny,

I hope you find some relief for your eyesight issues, as constant pain can eat at your very being. That being said, I have the greatest respect for your attitude and determination in resolving your issues, while remaining an incredible person. I have experienced periods of intense pain and I know how that can wear you down. Somehow, you not only live with your struggles, but you radiate a real sense of self control and empathy for others.

That is a trait that will serve you well in life and one which I admire you for maintaining, given your challenges.

Joe

ojo Thanks Joe, you are so kind...you are right about what pain can do to you, but, after living with pain for so long, you get used to deal with it, tho, sometimes I wish I could shoot myself, but I can't, because the only pistol I have, its my hair dryer (in Spanish its called pistol, gun of air), lol...I take norco when my pain is too bad, it helps a little, but I try to keep my mind busy in here, sharing experiences, it works for me,...again, thanks for your kind words, life goes on with or without pain...hugs ojo

Jeff G · « **Reply #19 on:** May 21, 2015, 05:47:17 pm »

TONNY IS ALWAYS THANKFUL WHEN WE PM THAT I USE ALL CAPS AND BOLD DUE TO HIS SUBSTANTIAL VISION PROBLEMS . HE HAS SHARED THAT HE DOES NOT PARTICIPATE AS MUCH AS HE USED TO BECUSE HE HAS TROUBLE READING WHAT WE POST SO IF YOU GUYS CAN REMEMBER THAT IT WILL MAKE IT A GREAT DEAL EASER FOR HIM TO REMAIN AN ACTIVE MEMBER .TONNY IS ONE OF THE FIRST TO OFFER UNCONDITIONAL SUPPORT FOR ANYONE IN NEED AND I ADMIRE THAT GREATLY IN HIM .

WRITING IN CAPS IS DISCOURAGED ON THE FORUM BUT IN THE THREADS TONNY STARTS I THINK ITS THE LEAST WE CAN DO FOR HIM . I HOPE THE MODS AGREE ITS THE RIGHT THING TO DO .

YOU ARE IN MY THOUGHTS TONNY AND I THINK YOU ADD SO MUCH TO THIS FORUM AND I AM SO HAPPY YOU ARE HERE .

Joe K · « **Reply #20 on:** May 21, 2015, 06:35:22 pm »

THANKS JEFF, FOR LETTING US KNOW HOW WE CAN MAKE IT EASIER FOR TONNY TO READ WHAT WE WRITE.

IT'S NOT SHOUTING WHEN IT'S DONE SO A MEMBER CAN SHARE OUR FORUM.

JOE

Tonny2 · « **Reply #21 on:** May 21, 2015, 08:30:14 pm »

ojo Aw Jeff, you are the greatest, thank you, I really appreciate it, this way, I do not have to use my magnified lense...my keyboard is a special keyboard for people with eyesight problems (big keys), that's why I can still post, but with this font size, it makes it easier for me to read you guys...thanks again Jeff and Joe...hugs ojo

Jeff G · « **Reply #22 on:** May 21, 2015, 08:39:18 pm »

YOU ARE A GREAT GUY AND ITS THE LEAST WE CAN DO

DANIELtakashi · « **Reply #23 on:** May 22, 2015, 06:58:58 am »

HI TONNY

GREETINGS TO YOU .

DANIEL

DANIELtakashi · « **Reply #24 on:** May 22, 2015, 07:34:07 am »

YOU ARE KIND AT HEART.

Wade · « **Reply #25 on:** May 22, 2015, 10:07:29 am »

Hi Tony,
Sorry your eye is giving you such problems still.
I hope the treatment works and your pain is relieved .
Sounds like this doc at least has a plan ,which is good.
Took 3 long years to get mine .
Pm me when you get chance and catch up.
your a very special person and have lots here who adore you.
Be well my friend , Wade

Wade · « **Reply #26 on:** May 22, 2015, 10:24:01 am »

SORRY TONY,
TRIED TO USE BOLD PRINT , MY COMPUTER HAS A MIND OF IT'S OWN.

Tonny2 · « **Reply #27 on:** May 22, 2015, 02:09:00 pm »

Quote from: bubba53 on May 22, 2015, 10:24:01 am

SORRY TONY,
TRIED TO USE BOLD PRINT , MY COMPUTER HAS A MIND OF IT'S OWN.

ojo Thanks Daniel and Wade...I will be fine, even looking like a pirate, lol...hugs ojo

Wade · « **Reply #28 on:** May 22, 2015, 03:35:45 pm »

Hey Tony ,
Eye patches can be sexy !

Tonny2 · « **Reply #29 on:** May 22, 2015, 06:14:34 pm »

Quote from: bubba53 on May 22, 2015, 03:35:45 pm

Hey Tony ,
Eye patches can be sexy !

ojo Hey my friend Wade, evrything thst covers my face, makes me look cuter, even a mask, would be better, lol...thanks my friend...hugs ojo

Tonny2 · « **Reply #30 on:** May 29, 2015, 09:22:41 pm »

ojo Hello everyone...I want to share an update about my eye's pain, after following my doctors advice of increasing the dosage of one of my eye drops (from 2 to 4 times a day), my pain has been less, I hope it continues like this, though, eventually, I will have to have my eye removed, because it is shrinking, already looks smaller than my other eye...thanks to all of you whom have given me support and good energy...let me tell you something, it's feels way better to recieve your good energy thsn given it to somebody else...I realy appreciate it guy and ladies...hugs ojo

shaunsag · « **Reply #31 on:** May 30, 2015, 01:58:07 am »

Quote from: Tonny2 on December 15, 2014, 08:37:33 pm

OJO hI FAMILY POZ

I just saw a cornea specialist here in my hometown (for a third opinion), he said that even if I were to have a cornea transplantation, I won't be able to see well anyway, I'm trying to talk to someone in the Eye institue in Baltimoe and Miami, but they want me to go and seem them, without even telling me if they do the procedure I need, I can not afford just going there for them to tell me, "I'm sorry, we do't do that procedure here", grrrrr...we'll see what happens...well, tomorrow, I will see my ID doctor and the vampire, wish me luck family, I really need to get good news, because the situation with my eyes is getting into me...ah, no more antidepressant for me...hugs ojo

HANG IN THERE IM EAGER TO KNOW HOW THINGS WILL TURN OUT, HERE IF YOU NEED ANYTHING

Tonny2 · « **Reply #32 on:** May 30, 2015, 11:57:24 am »

Quote from: shaunsag on May 30, 2015, 01:58:07 am

HANG IN THERE IM EAGER TO KNOW HOW THINGS WILL TURN OUT, HERE IF YOU NEED ANYTHING

ojo Thanks shaunsag, so far so good, tho, I wish there were something to help me with my neuropatic pain, ouch!..but here we are, still breathing and enjoying life, thanks again for replying...hugs ojo

lupetto · « **Reply #33 on:** May 30, 2015, 03:16:57 pm »

HEY TONNY!

I'M SO SORRY YOU HAVE TO BE STRUGGLING WITH THIS CONSTANT PAIN BUT AT LEAST IT'S GOOD TO HEAR THE EYE DROPS ARE HELPING A BIT. YOU HAVE BEEN SO BRAVE WITH THIS ALL AND I REALLY ADMIRE YOU FOR IT!

I KNOW REMOVING AN EYE SOUNDS VERY DRASTIC AND IT WOULD TOTALLY FREAK ME OUT BUT I JUST WANT TO TELL YOU THAT I KNOW SOMEONE WHO HAD TO HAVE HIS EYE REMOVED AND RECENTLY HAD A PROSTHESIS FITTED IN. IT LOOKS AMAZING, YOU CAN'T SEE THE DIFFERENCE. OBVIOUSLY HE CAN'T SEE WITH IT BUT AT LEAST THERE'S NO PAIN FOR HIM. I TRULY WISH IT WILL TURN OUT FINE FOR YOU TOO! TAKE CARE AND ALL THE BEST!

Tonny2 · « **Reply #34 on:** July 23, 2015, 10:04:34 pm »

OJO HELLO POZ FAMILY...WELL, I GUESS, MY CORNEA IS STARTING TO GET WORSE, I{M HAVING A BIT MORE PROBLEMS TO SEE THE LETTERS OF MY BIG KEYBOARD, AND READING SOME POST, IF MY VISION KEEPS GETTING WORSE AND YOU GUYS DON{T SEE ME AROUND, THIS WILL BE THE REASON...MY ID DOCTOR STILL DOESN{T THINK IT{S A GOOD IDEA THE TRANSPLANTATION OF CADAVER OR DONOR CELLS BECAUSE OF THE IMMUNOSSUPRESOR MEDICATIONS.

oNE MORE THING, IN MY LAST SURGERY IN MARCH 2007, I WAS IMPLANTED IN THE BACK OF MY EYE )RETINA= A VITRASERT )A CAPSULA WITH MEDICATION TO PREVENT CMV=, THIS IS A PLASTIC CAPSULE, TO MAKE A LONG STORY SHORT, THE SURGEON BROKE IN LITTLE PIECES THAT CAPSULE TO GET IT OUT, INSTED OF GETTING IT OUT COMPLETE, LEAVING IN MY EYE, A PIECE OF THAT PLASTIC CAPSULE, IT IS A SMALL PIECE, BUT INSIDE MY EYE, IT LOOKS BIG, AND IT IS SWIMING IN MY EYE, GETTING IN MY LINE OF VISION SOMETIMES, I WAS AFFRAID THAT ONE OF THESE DAYS, WHILE GOING DOWN SOME STAIRS, THIS THING WOULD GET ON MY LINE OF VISION MAKING LOSE (ESTARTTLE ME)MY FOOTTING AND FALLING DOWN...WELL, IT HAPPENED, i FELL DOWN FLAT, LANDING ON MY RIGHT KNEE ON THE SIDEWALK...I HATE THIS SURGEON!!!...OK GUYS AND GALS, SORRY FOR THE RANT...SORRY FOR THE MISSPELING, REMEMBER, I'M ALMOST BLIND, BUT LIVES GOES ON, I WILL START USING MY WHITE CANE, KEEP LEARNING BRAILLE...HUGS OJO

Anthony75 · « **Reply #35 on:** July 24, 2015, 08:14:06 pm »

TONNY, I WISH I COULD SAY OR DO SOMETHING TO MAKE IT ALL BETTER. I CANT EVEN BEGIN TO EXPRESS HOW MUCH YOU'VE HELPED ME. YOU ARE ALWAYS IN MY THOUGHTS. HUGS!

Tonny2 · « **Reply #36 on:** July 26, 2015, 12:19:36 am »

Quote from: Anthony75 on July 24, 2015, 08:14:06 pm

TONNY, I WISH I COULD SAY OR DO SOMETHING TO MAKE IT ALL BETTER. I CANT EVEN BEGIN TO EXPRESS HOW MUCH YOU'VE HELPED ME. YOU ARE ALWAYS IN MY THOUGHTS. HUGS!

ojo Hello Anthony, you already have helped me by showing your concerns, I appreciate it, but do not worry for me, I just have to make more adjustments to my life, I have done it for 20 years...I will have my laptop or Iphone read me my messages, and I can always dictate them...I guess you guys are not going to get rid of me easely, I'll be around until the end..so, please, do not worry for me, you have enough with your own problems...thanks anyway...hugs back to you, just a bit more stronger ojo

DANIELtakashi · « **Reply #37 on:** July 26, 2015, 01:05:32 am »

TONNY ,

PLEASE TAKE GOOD CARE OF YOURSELF.
I WILL CONTINUE TO KEEP IN TOUCH .

Tonny2 · « **Reply #38 on:** July 27, 2015, 12:47:25 pm »

Quote from: DANIELtakashi on July 26, 2015, 01:05:32 am

TONNY ,

PLEASE TAKE GOOD CARE OF YOURSELF.
I WILL CONTINUE TO KEEP IN TOUCH .

ojo Thanks a lot Daniel, I really appreciate your support

Tomorrow I have an appoinment with the cornea specialist, I wear what the doctor calls a band aid lense, I'm hoping that this lense is cloudy due to calsification, and tthat's why I can't see to well, other wise, it means that my stem cells transplantes are starting to fail...as I mentioned before, the solution for my cornea problems is to have another stem cells transplantation, this time, would have to come from a cadaver or a donor (previously we use my own cells, from my blind eye's cornea), and the treatment to prebent rejection from my body of those foreign cells, is to harsh for the rest of my body, according to my hiv specialist...so, please cross your fingers, toes, legs, even your eyes, so the lense is the problem, lol...hugs amigos ojo

BubbaPat · « **Reply #39 on:** July 27, 2015, 08:28:16 pm »

HOWDY MY RAY OF SUNSHINE!!!

SORRY I HAVEN'T BEEN ON.... JUST NOW SEEING YOUR STRUGGLES. I'M GOING TO SAY A PRAYER, SEND YOU GOOD ENERGY AND HOPE YOU GET A NEW DOCTOR THAT THINKS YOUR EYE PATCH IS SEXY AND CAN FIX YOUR OTHER EYE.

YOUR A BEAUTIFUL MAN AND WE ARE THE LUCKY ONES THAT YOU ARE HERE. BIG HUGE BUBBA HUGS COMING YOUR WAY KIDDO.

KEEP US IN THE LOOP.
BUBBA PAT

ianmx · « **Reply #40 on:** July 27, 2015, 10:16:42 pm »

HOLA MI AMIGO! BUENA SUERTE MAÑANA

MIRA, TONNY. HAVE YOU THOUGHT OF USING A SCREEN READER? I HAVE A CLIENT THAT I HAVE WORKED FOR OVER THE LAST 12 YEARS AND HE HAS GONE BLIND OVER THAT TIME BUT FUNCTIONS VERY WELL ON THE INTERNET WITH A SCREEN READER AND SPEECH TO TEXT TECHNOLOGY. WHEN I SPEAK WITH HIM ON THE PHONE I CAN HEAR HIS SCREEN READER, IT SOUNDS LIKE THE IPHONE SIRI VOICE, WE SAY IT'S THE OTHER WOMAN.

WE DON'T WANT TO SEE YOU LESS OFTEN

PUERTO VALLARTA AWAITS JAJAJAAJ I TRY TO ANSWER MOSTLY IN ENGLISH SO EVERYONE KNOWS THE CONVERSATION BUT I CAN DO SPANISH IF IT IS EASIER. EVERYONE LOVES GRINGO SPANISH!

NO MORE SUPER LARGE TEXT!

ABRAZOS!
IAN

Tonny2 · « **Reply #41 on:** July 28, 2015, 01:21:40 pm »

ojo @bubbapat, you always put a smile on my face everytime I read you...thanks for replying, my app. is at 2.30 PM, I will let you know how it goes

@Ianmx, thanks for the recomendation, my Iphone reads my emails and I dictate them too, I do not know if I can use it in here, I tried once but it read the whole page before it gets to what I want to read...I will check that out, thanks again...and do not push it, about Puerto Vallarta, because you might regreted, jajja...English is fine, you are right, somebody might yell at us, lol...I appreciate you being a newbie, giving this old "F" support, lol...hugs all the way 2 GDL ojo

Tonny2 · « **Reply #42 on:** July 28, 2015, 07:47:13 pm »

ojo Well, I saw the cornea specialist, my visin three months ago, was 20/80, today I just see 20/200, as all may know, the perfect vision is 20/20...this means that my stem cell transplantation is no longer working, there for, my vision will start to get even worse, uff...I guess I won't die for this, just have to make more adjustments in my life, tho, what it worries me is that I'm taking care of my mother, she is pretty healthy, but she is 81 years old (I hope she doesn't read this, lol), being almost blind it will be a bit more difficult to help her with the house shores, but we will manage, I'm sure...Ok guys, just wanted to update you, thanks for reading me...hugs ojo

@Ianmx...this doe not hinder me going to Puerto Vallarta, when will you be there?, lol

ianmx · « **Reply #43 on:** July 28, 2015, 08:26:17 pm »

TONY THANKS FOR THE UPDATE!!!

YOU HAVE OVERCOME SO MUCH IN YOUR LIFE AND HAVE BECOME AN INSPIRATION TO MANY HERE, AND IN YOUR PERSONAL LIFE I AM SURE. THIS IS ANOTHER CHALLENGE THAT WILL JUST SHOW HOW AMAZING YOU ARE AND REMIND YOU ABOUT YOUR OWN STRENGTH. I GUESS SOMETIMES WE ALL NEED THAT REMINDER ABOUT OURSELVES, BUT SHIT SOMETIMES WE WANT GOD TO PICK ON SOMEONE ELSE FOR A WHILE, THAT'S WHEN WE GRAB THE TEQUILA!

BESIDES, WHEN YOU MAKE IT TO VALLARTA WE CAN WALK THE BEACH AND I WILL PRETEND TO BE BLIND SO WE HAVE AN EXCUSE TO TOUCH PEOPLE'S BODIES IN ALL THE WRONG PLACES. JAJJAJAJA

ABRAZOS A MI AMIGO

Tonny2 · « **Reply #44 on:** July 28, 2015, 09:07:40 pm »

Quote from: ianmx on July 28, 2015, 08:26:17 pm

TONY THANKS FOR THE UPDATE!!!

YOU HAVE OVERCOME SO MUCH IN YOUR LIFE AND HAVE BECOME AN INSPIRATION TO MANY HERE, AND IN YOUR PERSONAL LIFE I AM SURE. THIS IS ANOTHER CHALLENGE THAT WILL JUST SHOW HOW AMAZING YOU ARE AND REMIND YOU ABOUT YOUR OWN STRENGTH. I GUESS SOMETIMES WE ALL NEED THAT REMINDER ABOUT OURSELVES, BUT SHIT SOMETIMES WE WANT GOD TO PICK ON SOMEONE ELSE FOR A WHILE, THAT'S WHEN WE GRAB THE TEQUILA!

BESIDES, WHEN YOU MAKE IT TO VALLARTA WE CAN WALK THE BEACH AND I WILL PRETEND TO BE BLIND SO WE HAVE AN EXCUSE TO TOUCH PEOPLE'S BODIES IN ALL THE WRONG PLACES. JAJJAJAJA

ABRAZOS A MI AMIGO

ojo Thanks Ianmx, you almost make me cry, you are a sweet guy, but, it is what it is...I lived five years with AIDS, because of treatment failure, that's why I got this infection in my eyes CMV, tho, I do not have these problems for the CMV, I had them because of bad surgeries...I also got hiv through a blood transfusion after a bad accident on the freeway in Mexico in 1987, tho, if it weren't for that blood, I wouldn't been here...yes, you are right, one more challenge to face, for me and for my family, it's not to going to be easy, but I will survive...I really appreciate your kind words, but God has nothing to do with this, lots of people say why me?, I say why no me, things happened for a reason.

About Vallarta, I think is a good idea, going to the beach, but I assure you, if I "see" something good, I will grab it first, hahahah ojo

ianmx · « **Reply #45 on:** July 28, 2015, 09:15:13 pm »

Quote from: Tonny2 on July 28, 2015, 09:07:40 pm

About Vallarta, I think is a good idea, going to the beach, but I assure you, if I "see" something good, I will grab it first, hahahah

OK, I WILL JUST SAY 'A LITTLE MORE TO THE LEFT TONNY' JAJAJAJA

WHEN I AM AT MY COMPUTER I AM GOING TO MESSAGE YOU MY WHATSAPP AND EMAIL. TALK SOON.

Tonny2 · « **Reply #46 on:** August 10, 2015, 09:03:10 pm »

ojo Hello again, new update...went to see a different cornea specialist, same recommendations, no stem cell transplantation for now, treatment bad for the rest of my body (immunosupresion meds)...wait until, reaserchers find the way to harvest some stem cells from another part of my body, and those cells be transplanted on my cornea, according to the specialist, reasercher are already working in that...better stay as I'm now, almost blind...well, it is what it is, after almost 21 years, five living with AIDS, I guess, I shouldn't complain...I will start using my white cane, and keep trying to learn Braille, it is so difficult and I think, I'm to old for that, hehehh...hugs ojo

BubbaPat · « **Reply #47 on:** August 25, 2015, 06:38:51 pm »

I'll cross my fingers and say a prayer for you sunshine!!
Maybe you can be like Rutger Hauer in Blind Fury. A bad a** with a sword.
Maybe I'll do some research and find you a cane with a sword in it.

HUGS to you kiddo!!
Bubba Pat

Sight or no sight... YOU make my day a little better.

Tonny2 · « **Reply #48 on:** August 27, 2015, 04:40:32 pm »

Quote from: BubbaPat on August 25, 2015, 06:38:51 pm

I'll cross my fingers and say a prayer for you sunshine!!
Maybe you can be like Rutger Hauer in Blind Fury. A bad a** with a sword.
Maybe I'll do some research and find you a cane with a sword in it.

HUGS to you kiddo!!
Bubba Pat

Sight or no sight... YOU make my day a little better.

ojo Thanks bubbaPat...you slways put a smile on my face...you are my sunshine too...I love you...oops, I have never said that to anyone before, I hope you are single, lol...hugs and kisses ojo

Tonny2 · « **Reply #49 on:** September 09, 2015, 09:37:03 pm »

ojo Hello to those who follow my story, usually, I try to be supportive and helpful to others, but now, I had a big scare of my life...I know that my vision will get worse with time, and I always thought that I wouldn't be able to read or see things clearly, that I would see at least light, but two days ago, I woke up and I couldn't see anything, even my own hand in front of me, I was scared to death, fortunally it lasted like five minutes, I turned my lights on, and little by little I started to see again (seeing is an undestatment)...so I went to the specialist, retina, he checked everything, retina ok, eye pressure ok, my cornea, as all of you know is the problem, but still looks the same as last time, two weeks ago I saw the cornea specialist, so, he , the specialist didn't know what went wrong, since that morning, I haven't had a problem...I hope and reaserches find something soon to help my eyesight...well, it was my turn to rant...hugs

thanks Jeff again ojo

Wade · « **Reply #50 on:** September 09, 2015, 10:44:12 pm »

TONY MY FRIEND ,
YOU DESERVE A RANT , YOU ARE ALWAYS THE FIRST TO OFFER SUPPORT
TO OTHERS.
I WISH THERE WAS SOMETHING I COULD DO TO HELP AND EASE YOUR
WORRY.
GIVE ME A CALL ITS EASIER THAN TYPING .....LOL

A BIG HUG , WADE

Tonny2 · « **Reply #51 on:** September 10, 2015, 08:10:29 am »

ojo Thanks my friend, you are already doing something to make me feel better, showing me your support, it is very important to me, I think, I already am starting to see better with your message, ...thanks for asking me to call you, but if I do it, you will ask me to go back and keep typing, you wouldn't be able to undestand my heavy mexican accent, hahahah...thanks again, I really appreciate it, again, congratulations and thanks for offering to help other, that shows you are a great guy...hugs ojo

Tonny2 · « **Reply #52 on:** October 27, 2015, 09:06:46 pm »

ojo Hello poz family

An update on my last blood work results...cd4 went from 578 to 414, cd4% from 26 to 24, still UD, recent blood work October 20...still, no approval for eye surgery, have to wait until,new stem cell transplantation reserdh are avialable, I need to use my own stem cells...hugs ojo

samm2015 · « **Reply #53 on:** October 27, 2015, 11:29:19 pm »

Tonny,

You have been a great support after my Dx, you are always there to offer your advice and love. I am really really sorry to hear about the hardship you have to go through. But like a fighter that you have been you will definitely definitely come out of this. We all are wishing for your quick recovery. Love.

Tonny2 · « **Reply #54 on:** October 28, 2015, 05:45:44 pm »

Quote from: samm2015 on October 27, 2015, 11:29:19 pm

Tonny,

You have been a great support after my Dx, you are always there to offer your advice and love. I am really really sorry to hear about the hardship you have to go through. But like a fighter that you have been you will definitely definitely come out of this. We all are wishing for your quick recovery. Love.

ojo Thanks for your kind words samm2015, I'm just sharing my experineces with everyone who wants to read me, and yes, it's been a long struggle living with hiv/aids, because of treatment failure since I started treatments in 95, I lived with aids for almost six years, getting lots of OIs, the worst, for me, was CMV retinitis who have left me legally blind, and some bad surgeries (eye surgery), but I will be find, I'm learning Braille, got my white cane, tho, I haven't use it yet, a friend of mine had offered me to get a companion dog for me, tho, there is a waiting list, I told her, that there are other people whom might need the dog more than me, so I told her no need it, but, again, I will be ok...keep up with the good attitude, it helps to live better with hiv, trust me...hugs ojo

PittGurl · « **Reply #55 on:** October 28, 2015, 10:19:17 pm »

Tonny2 - you've been there for me so much....please know my friend that I am praying for you and i hope you NEVER have that scare again in your life!!! Im glad the drs saw you and everything looked the same.

sphinxcat · « **Reply #56 on:** October 29, 2015, 02:59:02 pm »

Best luck Tony2! Wish you feel better!

Tonny2 · « **Reply #57 on:** March 17, 2016, 09:52:18 pm »

ojo Hello friends and members

Well,, yesterday I had two doctors appoinments, my ID plus Dracula, and a cornea specialist, yes, one more different cornea specialist, and yes, still confused and frusrated...now, the reason of my vision loss has nothing to do with my cornea, it has to do with GLAUCOMA, I've using TIMOLOL (eye drops for eye pressure) for more than four years, and still I'm having problems, so, the doctor added more eye drops (one more medication), he said to me that even if I were to have the stem cells transplantation, I still wouldn't be able to see well (although there is not a chance to have that surgery done)...so, I guess pretty soon, you guys won't see me around, unless I train my dog how to type and read to me your post, lol...it is what it is, as long as I can be on here, I will do it...I have to wait a week to know the results from Dracula, I will keep you guys and ladies posted...hugs -jo

JosephP · « **Reply #58 on:** March 17, 2016, 10:09:05 pm »

Tony... Wish you the best, mon ami!

JonJon · « **Reply #59 on:** March 17, 2016, 10:23:14 pm »

Praying for the best possible outcome for you tonny2. I always appreciate your uplifting comments and optimism and would feel lonely without you here on this board. Keep us posted.

John

Tonny2 · « **Reply #60 on:** March 18, 2016, 02:02:50 pm »

ojo Hello....thanks Joseph and Jon Jon, I will be ok and I will keep you posted ...hugs ojo

CaveyUK · « **Reply #61 on:** March 20, 2016, 09:04:06 am »

HEY TONNY - THOUGHTS ARE WITH YOU. SINCE ARRIVING AT THIS FORUM YOU HAVE BEEN ONE OF THE MOST SUPPORTIVE POSTERS ON HERE, ESPECIALLY FOR PEOPLE NEWLY DIAGNOSED, AND YOUR EXPERIENCE AND HISTORY ARE AN INSPIRATION. STILL HOPING THE RESEARCHERS FIGURE OUT SOME WAY TO MAINTAIN A DEGREE OF SIGHT - THE FORUM WOULDN'T BE THE SAME WITHOUT YOUR WISDOM

Jim Allen · « **Reply #62 on:** March 20, 2016, 09:12:19 am »

REALLY SORRY TO HEAR THAT. I AGREE WITH caveyuk, IT WOULD NOT BE THE SAME WITHOUT YOU. HOPING FOR GOOD NEWS AND TAKE IT EASY. JIM.

Tonny2 · « **Reply #63 on:** March 20, 2016, 02:52:20 pm »

ojo Hello caveyuk, thanks for your kind words, I really appreciate it
@Jim Dublin, thanks to you too, I willl be around as long as I can, thanks for the huge font size, I don't need the magnefie glass with this size of font, I appreciate your kindness and helping me keep reading...I have an ilumined and big keys, keyboard, that's why I'm still here, hoopefully, with this extra eye drops, my eye sight will stay where its now, tho, my cornea is also getting worse...anyway, it is what it is...hugs to everyone ;p ojo

leatherman · « **Reply #64 on:** March 20, 2016, 07:15:54 pm »

Sorry about the hard time you're having. Are you using any sort of software for people with reading disabilities or blindness?

http://usabilitygeek.com/10-free-screen-reader-blind-visually-impaired-users/

Tonny2 · « **Reply #65 on:** March 20, 2016, 07:32:51 pm »

Quote from: leatherman on March 20, 2016, 07:15:54 pm

Sorry about the hard time you're having. Are you using any sort of software for people with reading disabilities or blindness?

http://usabilitygeek.com/10-free-screen-reader-blind-visually-impaired-users/

ojo Hi leatherman, thanks for replying...no, the only thing I'm using is what I got here on accesibility, I checked out your linjj, and there is too much to reas, I can't, hahahhany suggestions?...I appreciate your help...hugs ojo

Tonny2 · « **Reply #66 on:** March 23, 2016, 08:03:40 pm »

ojo Hello everyone

Well, today I got my blood work results from last week visit to Dracula...after nine years of taking the same combo, my numbers are still pretty good for a LTS like me, after living with AIDS for almost six years, then, five years with numbers (cd4) around 360, then, going back down to 36 for a year, yes, I was in the AIDS level again, then, I started the so called "salvage treatment", which it's the one I'm still taking, my numbers are unbelievable...cd4=619, cd4%=29 and still UD, so guys, hang in there, good thing are coming your way, just be patient...hugs ojo

JonJon · « **Reply #67 on:** March 23, 2016, 08:36:35 pm »

TONNY
THIS IS GREAT NEWS!!! IT IS INSPIRING FOR US IN THE AIDS CATEGORY WITH LOW CD4 COUNTS LIKE MYSELF THAT THERE IS HOPE! AS I MENTIONED BEFORE, YOUR OPTIMISM IS ENCOURAGING FOR US ALL.

JOHN

Wade · « **Reply #68 on:** March 23, 2016, 08:50:42 pm »

Hey Tony ,
That's great news my friend!
We will talk that is easier than typing....lol

Hugs , Wade

aki-pk · « **Reply #69 on:** April 18, 2016, 06:24:50 am »

I am hiv +ve from Pakistan where discussion on this topic is almost nil. I am very much depressed and there is no forum to discuss issues facing due to my treatment except my doctor. I am on treatment (Efavirenz,Lamivudine &Tenofovir disoproxil fumarate 600+600+300mg) one pill per day since 30th March 2016 i.e.19days have been passed and I remained under great depression,weakness and tired all the time. I start weeping loudly and sometimes just want death instead of life. So I requested my doctor to reconsider my medicine. Now he is changing medicine from tonight. I do not know what will be the effect of new regimen. Is there anyone from pakistan to share his views. My CD4 on 17th March 2016 was 359,viral load not tested.
My brain seems foggy and I feel dizziness.Said medicine seems bad effect on brain. Can someone comment on the medicine being given to me?

Tonny2 · « **Reply #70 on:** April 18, 2016, 02:31:03 pm »

Quote from: aki-pk on April 18, 2016, 06:24:50 am

I am hiv +ve from Pakistan where discussion on this topic is almost nil. I am very much depressed and there is no forum to discuss issues facing due to my treatment except my doctor. I am on treatment (Efavirenz,Lamivudine &Tenofovir disoproxil fumarate 600+600+300mg) one pill per day since 30th March 2016 i.e.19days have been passed and I remained under great depression,weakness and tired all the time. I start weeping loudly and sometimes just want death instead of life. So I requested my doctor to reconsider my medicine. Now he is changing medicine from tonight. I do not know what will be the effect of new regimen. Is there anyone from pakistan to share his views. My CD4 on 17th March 2016 was 359,viral load not tested.
My brain seems foggy and I feel dizziness.Said medicine seems bad effect on brain. Can someone comment on the medicine being given to me?

ojo hello there....I'm sorry you are dealing with this issues...lots of people complain about thhis side effects caused by the efavirenz you are taking, I'm glad your doctor will change your combo, you will feel better....Efavirenz might not be for some people, but I think it's a good med for others who never experienced side effects as bad as yours, I took it for five years, first three or four night had vivid dreams, after that, I didn't feel anything...like I said, I'm glad your docctor will switch your combo, please let us know what he gives you...treatment can not be worse than the ellness, so, do not think in dying, there are other options...your cd4 is good...best of luck and keep us posted...hugs all the way to Pakistan ojo

PS do you want to share how you get your meds and health services in your country?

aki-pk · « **Reply #71 on:** April 22, 2016, 02:17:34 am »

Thanks tonny2 for your reply. My doctor has switched my regimen. Now I am taking (Lopinavir200mg+Ritonavir50mg) 2pills two times a day,(Avolam150mg) 2pills at night,(Tenofovir disproxil fumarate300mg) 1pill at night. Although this regimen has not so much bad effect as compared with the previous one with Efavirenz but still I am in crises. It seems as living with treatment is bad than without treatment. I am very much confused whether I should leave all such treatments and let me on the fate.What should I do?
More worst for me is that we both (wife & me) are suffering with this shit. My wife condition is very bad as compared with me.Her CD4 is less than 35. She is on Tripla (same medicine as of my previous one).Although our family is very supportive but we are creating burden on them and making their lives tough as they are trying to take care of us along with their daily routine works.My younger son is studying in school and his exams are very near.Moreover to manage daily house works are also coming tough.We have to call my sister to come to us.She is helping us but she is also old and not so healthy to manage home for a long time. What will happen? Daily I make courage and daily it breaks. It seems neither we (wife & me) living life nor die. Its not the life.Its curse. Neither I am comfortable at home nor on job. If I remained at home I face depression issues.If I come on job I feel to much tired and try to find some place to lay down on some bench or on floor.But I am trying to stick with my job to earn livings as of no other source of income.Its very terrible condition.May God bless your kindness on us!

Tonny2 · « **Reply #72 on:** April 22, 2016, 09:23:11 am »

Quote from: aki-pk on April 22, 2016, 02:17:34 am

Thanks tonny2 for your reply. My doctor has switched my regimen. Now I am taking (Lopinavir200mg+Ritonavir50mg) 2pills two times a day,(Avolam150mg) 2pills at night,(Tenofovir disproxil fumarate300mg) 1pill at night. Although this regimen has not so much bad effect as compared with the previous one with Efavirenz but still I am in crises. It seems as living with treatment is bad than without treatment. I am very much confused whether I should leave all such treatments and let me on the fate.What should I do?
More worst for me is that we both (wife & me) are suffering with this shit. My wife condition is very bad as compared with me.Her CD4 is less than 35. She is on Tripla (same medicine as of my previous one).Although our family is very supportive but we are creating burden on them and making their lives tough as they are trying to take care of us along with their daily routine works.My younger son is studying in school and his exams are very near.Moreover to manage daily house works are also coming tough.We have to call my sister to come to us.She is helping us but she is also old and not so healthy to manage home for a long time. What will happen? Daily I make courage and daily it breaks. It seems neither we (wife & me) living life nor die. Its not the life.Its curse. Neither I am comfortable at home nor on job. If I remained at home I face depression issues.If I come on job I feel to much tired and try to find some place to lay down on some bench or on floor.But I am trying to stick with my job to earn livings as of no other source of income.Its very terrible condition.May God bless your kindness on us!

ojo hello aky...I'm sorry you are feeling this way, but trust me, you do not want to stop treatment and I think you have to keep fighting, life is good even while living with hiv...your treatment is good, I took it, just give it a little time...your numbers are good, now that you are off the efavirenz, you will feel better, I'm not a doctor, but it seems to me that you are having trouble dealing with your dx, have you told your doctor about this depression?, maybe he can give you some medication to take while you get used to your new life....if you are feeling tired, try to work half day, but you need to try harder, for your wife and children, you have to be the stronger one, to pass that strengh to your wife, as you have said, she is in worse shape than you, so, please, be stronger, it will get eaiser with time, by the way, I took the treatment you are on (no tenofovir tho, I'm allergic to it), it's a good treatment, take it with food...about your family, I'm sure they don't mind helping you guy out, concentrate in getting better so you can go back to try to live a normal life, trust me, it gets better but we have to put some effort for our sake...look for psycological helpif you can't habdle your dx.

Tell me more about your wife, you said she is on ATRIPLA, how is she dealing with it, I imagine she is handling it better than you, women are stronger than men on this matters...is she taking any antibiotics to prevent OIS?, I hope she is.

Nobody said that living with hiv was going to be easy, especially right after a dx, but, with time and lots of good energy, positive energy, it will get better, and we, making some adjustment in our lives, will get used to our new life...you two are going to be able to see your children (I'm not sure if there are kids), finishing school, get married, having kids, I think that just for this reason, it is worthy it to keep fighting, I have done it, all this past 21 years, because I have a mother who is counting on me and I can't not fail her, nor to my family, who have been there for me, if I did it, you two can do it, so, be stronger for your wife, she need you now, more then ever, and your family, it is worthy...wishing you the best to both of you, forget about the rest of the people, we do have stigma in the USA too, but what it matters is us, our lives...hugs ojo

Tonny2 · « **Reply #73 on:** September 15, 2016, 08:44:29 pm »

OJO HELLO EVERYONE

WELL, STILL CONFUSED AND MORE FRUSTRATED...UPDATE

I WENT TO SEE MY CORNEA SPECIALIST TWO MONTHS AGO, HE TOLD ME THAT MY LOSS OF VISION IT MIGHT BE BECAUSE OF GLAUCOMA, I ALREADY USE TWO DIFFERENT EYE DROPS TO TREAT GLAUCOMA, MY EYE PRESURE IS GOOD, LAST READING 17...HE REFERRED ME TO A GLAUCOMA SPECIALIST, THIS SPECIALIST TOLD ME THAT HE DOESN'T KNOW IF IT IS GLAUCOMA OR SO MANY SURGERIES I'VE HAD IN THE PAST, BUT GAVE ONE MORE EYE DROP TO REDUCE STILL MORE MY EYE PRESSURE, GRR!!!...SO, I'M STILL CONFUSED, AM I GOING TO NEED A STEM CELL TRANSPLANTATION FOR MY CORNEA, OR I'M DOOM TO BECOME COMPLETLY BLIND DUE TO GLAUCOMA (GLAUCOMA KILLS YOUR OPTIC NERVE, MAKING YOU COMPLETLY BLIND, IF IT IS MY CORNEA, I WILL STILL SEE LIGHTS, WHICH I PREFERE...ANYWAY, WILL SEE, I FRIEND OF MINE WANTS TO GET ME A GUIDE DOG, STILL I KEEP TELLING HER THAT THERE ARE MORE PEOPLE NEEDING A DOG WHO MIGHT GET MORE USE OF IT THAN ME (THERE IS A WAIT LIST TO GET A DOG)...OK, THAT'S THE NEWS, I'LL WAIT TO "SEE" WHAT HAPPENS...HUGS TO ALL OF YOU...TAKE CARE OF YOUR EYES ...ALTHOUGH, LIFE IS STILL GOOD, EVEN WITH MY HEADLIGHTS (EYES) BURNED OUT ;P OJO

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