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Author Topic: good energy  (Read 866 times)

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Online Tonny2

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good energy
« on: August 04, 2014, 04:00:10 PM »


   ojo    Hi family poz...I'am seeing my ID doctor and the "vampire" (lab-tech) tomorrow noon, and I can take all the good energy I can get from you guys, I'll really need it    thanks      ojo

Online Jeff G

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Re: good energy
« Reply #1 on: August 04, 2014, 08:24:52 PM »
Sending good energy your way ... you should be feeling it right now !

Online Tonny2

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Re: good energy
« Reply #2 on: August 04, 2014, 08:52:34 PM »
Sending good energy your way ... you should be feeling it right now !

   ojo   thanks Jeff, I'm realling feeling it, I just wrote a long reply in Spanish heheh...I really appreciated it buddy, tomorrow I will ask my doc if I'm a good candidate for a stem cells transplantation from a donor (cornea), wich it means, I'd have to take medications to suppress my immune system, you know, its already suppressed, we'll see what the doc has to say, please cross your fingers, even your toes, so I get a good answer, thx again buddy    ojo

Offline Almost2late

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  • "My disease stops with me" - Jeff G
Re: good energy
« Reply #3 on: August 04, 2014, 09:02:46 PM »
Good luck to you  :)
Atripla, Bactrim, Azithromycin
Date         CD4's          VL
02/14     13  2.79%    228k+
03/14     52       7%       3k-
04/14     not done          2k-
05/14     184     9%       595
06/14     117     8%       235  switched off Atripla
08/14     135    10%      110  stopped Azithromycin
Tivicay, Truvada, Bactrim

“I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!”
― Dr. Seuss

“Everybody dies … The thing is, to have a life before we die.”
― John Irving, The World According to Garp

Online Tonny2

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Re: good energy
« Reply #4 on: August 04, 2014, 09:58:35 PM »


   ojo   thx almost2late, I really appreciate you reasing me, I will keep you guys post    ojo

Offline tryingtostay

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Re: good energy
« Reply #5 on: August 04, 2014, 10:54:23 PM »
take it in stride, life will go on after :)
Labs:
March 2014: CD4 1730 @ 41%, VL 87 without meds
May 2014: CD4 1309 @ 42%, VL <20 without meds
Sept 2014: CD4 1655 @ 42%, VL xxxx  - waiting for results

Online Tonny2

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Re: good energy
« Reply #6 on: August 05, 2014, 09:04:17 PM »
 

   ojo   Hi Jeff, almost2late andtryingtostay

everything went well with my ID doctor, blood work done, in one week, we'll know the results, but, I wanted to see my ID doc to show him, a protocol for a surgery I need done n my right eye's cornea (stem cell transplantation from a donor or a cadaver), this protocol indicates the kind of treatment I have to follow if I get the surgery done, as you may know, I would need to take immunosuppresore medications, to prevent rejection from my body of those cells(stem cells), to make a long story short, my ID doctor said it is to dangerous, it might not be worth it, so that means, that my cornea will get worse and I will not be able to see anymore, uff
we don't know how long before I start to lose my eye sight, it could be weeks, months or years, in according to the eye doc....we'll see, anyway, thanks again guys for your good vibes, I'll keep you posted with my blood work results, Ok?   ojo

Online Jeff G

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Re: good energy
« Reply #7 on: August 05, 2014, 09:19:29 PM »
Im sorry to hear the news Tonny ... Im have known HIV positive people who have had transplants but that does not mean its right for you . Maybe a second opinion is in order ?

Offline tryingtostay

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Re: good energy
« Reply #8 on: August 05, 2014, 10:28:51 PM »
Jeff has it right.  Get a second opinion. 
Labs:
March 2014: CD4 1730 @ 41%, VL 87 without meds
May 2014: CD4 1309 @ 42%, VL <20 without meds
Sept 2014: CD4 1655 @ 42%, VL xxxx  - waiting for results

Online Tonny2

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Re: good energy
« Reply #9 on: August 06, 2014, 01:16:05 PM »

   ojo   Thank Jeff, almosttolate and tryingtostay...thanks for replying and for your good wishes
I got a stem cells transplantation surgery (cornea) last January 11, the cells were taken from my cornea's right eye, so I didn't have to get any meds, but my cells for stopped working (well, they are not working as well right after the surgery), now the cornea's specialist mentioned to me the surgery using foreign cells, so he gave me the protocol for this kind of surgery for people with hiv, he told me to discusse it with my hiv doc, so my ID doctor told me, he will read the protocol to weight benefits and risks, tho, I'm kind of worry, for what I read in tnose papers.
Jeff, do you really know some people in this situation?, I would love to hear from them, are this people here in the forum?...maybe they can give me some advice in what to do...I trust my ID doctor, so I'll wait what he has to say...thanks again guys, I really appreciate you guys reading my bad English and some times typping the wrong key cause of my blindness...hugs

Online Tonny2

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Re: good energy
« Reply #10 on: September 08, 2014, 02:49:29 PM »



     :( Hi everyone who reas me...finally I talked to my ID doctor about the posibility of having a  Lymbal stem cell transplantation (cornea), and it is not good news...he said, that for the moment I can not have this surgery done because of my low cd4 (538), right now my cd4 looks good, but I have a history of low cd4s, so he hopes in the future, I might be able to have it done, hopefully I'd be able to be here reading and replying some posts...but anyway, I will have to wait and "see" what happens, my cornea's cells, they are still kicking butt, so please keep me in your thoughts   =)

Offline bubba53

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Re: good energy
« Reply #11 on: September 09, 2014, 10:54:22 PM »
 Hi ,I too have had a cornea transplant several years ago.
 Mine was through an injury , my T cells have stayed in the same
 range as yours for many years now. I fared well with the procedure ,
 pain in the ass getting the stitches out couple times a weeks , other
than that ,no problems. Steroid drops couple times a week forever,
but moderate vision with glasses, and on my way  ! Some people get better vision than others . I don't know why you wouldn't be a candidate for the procedure I had, but I am not familiar with the stem cell approach though ?

Online Jeff G

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Re: good energy
« Reply #12 on: September 09, 2014, 11:22:54 PM »
I have not replied much in this thread because Im am not familiar with the procedure but I thought a cd4 count of 538 is not a bad number to work with .

Can you elaborate a little bit more Tonny ?

Online Tonny2

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Re: good energy
« Reply #13 on: September 10, 2014, 03:58:53 PM »


   ojo    Hi bubba, and Jeff, thanks for replying

well, my doc says (ID) that my soldiers $cd4) are like wounded soldiers, because even tho they are now 538, I have a history of low cd4s, my cd% is 22 or 25, I can remember, ...my cd4 since 2007 till now have been between 250 (I was taken prednisone to treat an autoimmune anemia) to 538, my cd4% 22 to 30, right now 22/26....before 2007 my cd4 were zero from2005-2007...So I have gone through a lot of eye surgeries, both eyes (retinal detachment and vitrasert implantation in the back of the eye) so, in according to my cornea specialist, all these surgeries has caused damage in my cornea (tho I know that my retina specialist damaged it, this is a different story, that I'll vent in another time grrr)...In 2009, I had my first Lymbal stem cell transplantation, we used someo of my cornea's right eye cells (this eye is blind due to a bad retinal detatchment syrgery, I'll vent in a different time too), they worked (the cells) until last December, so I went again in Juanary for another transplantation, and they are not working as good as before, (the doc took all the cells were left in that cornea), so my next option is/was the cadaver's cells...as you said bubba, usually these cells work forever, as least for 30 years, but for some reason I'm an unlucky guy,(I've been using eye drps since the first surgery bubba), anyway, now, it will be different cause will have to take immnunosuppresant meds, if I were to have the surgery, here are some of the meds I would have to take for life according to the protocol for people with hiv
1.- Tacrolimus
2.- Cellcept
3.- Prednisone

I'm sorry for the long post, I want to add, that the cornea specialist from the Cincinnati Eye Institute, my cornea specialist at The Eye Cole Institure in Cleveland, Oh., and my ID doctor at the Cleveland Clinic, DO NOT recommend the surgery because of my particular case...thanks guys for your interest on my case, I really appreciate it   ojo

Online Jeff G

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Re: good energy
« Reply #14 on: September 10, 2014, 04:03:53 PM »
Thanks for clearing that up ... I just want you to know Im concerned but really do not know about this stuff or how to respond in a helpful way . I wish I knew more .

Online Tonny2

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Re: good energy
« Reply #15 on: September 10, 2014, 04:15:12 PM »
Thanks for clearing that up ... I just want you to know Im concerned but really do not know about this stuff or how to respond in a helpful way . I wish I knew more .

Thanks buddy, by replying alone, you are helping me a lot, being concerned means I'm not alone,,,gracias Jeff, I just have to wait if my wounded soldiers start to increase even more, so maybe I can get the surgery done, otherwise, I will start to train my dog to, sign in to the forum, read and write and even take me for a walk  lol    ojo

Offline bubba53

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Re: good energy
« Reply #16 on: September 10, 2014, 08:46:11 PM »
Hi , I wish also I could be of more help , I had just a cornea transplant,
You on the other hand have other problems as well, retinal detachment for just one.
I can't give you any advice because problem is totally different than mine,
I really wish I could ,someone else might be more knowledgeable ,and have a similar experience as yours. Oh , and you are never alone on these forums  !!
Sending much good energy your way my friend !!     Be Well

Online Tonny2

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Re: good energy
« Reply #17 on: September 10, 2014, 08:54:51 PM »


   ojo   thanks bubba, just by replying you too, are helping me a lot...your implant (cornea) was from a donor?...so you just use eye drops, hmmm...anyway, I just hope, as my cornes specialist told me, he doesn't know how much longer my cells transplanted may last working, he said it could be weeks, months or years...obviously I hope and want to be years befor I go blind and away from this forum, thanks again...hugs     ojo

Offline bubba53

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Re: good energy
« Reply #18 on: September 10, 2014, 09:23:40 PM »
Yes I use steroid drops , and my cornea was from an eye bank , supplied by cadavers. I however had no stem cell treatment ,or retinal problems. Always explore you treatment options , and ask questions about anything you don't understand , That's about the best advice I can give
Be well , Wade

Online Tonny2

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Re: good energy
« Reply #19 on: September 10, 2014, 10:40:00 PM »


    Thank Wade, my retinal problems are over, my last surgery was in November 2006, were I got a vitrasert implantes (a capsule with gancyclovir that goes in the back of the eye, so med goes dirsctly to the retina, to prevent CMV), but the doctor made a mistake and that vitrasert got loosed and was swimming in my eye, so I got another surgery to get it out and he put another one, even I told him that I didn't need it because by then my cd4 were 361...he damaged my cornea by having my eye opened for too long, he couldn't get the old vitrasert out by cutting the stiches, so what he did is, he broke the plastic vitrasert and I guess he was looking for the pices of it, and left a little piece in, that now is swuimming in my eye, eventhough is a little piece from the in-out looks big and sometimes gets on my line of vision, scaring me grrrrr, that's why I feel so frustrated some times, because I'm not working anymore due to HIV or CMV, I've to retired early because the stupidity of two different doctors, my right eyes I lost vision because the retina specialist made a little hole in my retina during a reattachment of the same (1999), and then 2007 March another retina specialist from the Eye Cole Institute at Cleveland Clinic, screwed my left cornea and left a little "fish" swimming in my eye, I don't know if I can put the name of this asshole (excuse my language, bad it makes me mad)here  in the forum so if someone goes and have surgery with him,you'll know with what kind of doctor you would be dealing with...this guy tried to fool me telling me shit, like if I were a stupid guy, I have delt with doctor since 1996 and I know my stuff...why I didn't sued these doctors, I asked a lawyer, he told me it was difficult to proof negligence and you know, having HIV had something to do too, besides this, all doctors cover their backs each other grrr...ok, thanks Wade, know I feel better by ranting here ufff,   ojo

Online Tonny2

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Re: good energy
« Reply #20 on: September 10, 2014, 10:42:12 PM »



   sorry, I forgot to add this..I'm a guy with lots of luck, but, bad luck..lol (I don't know if my Spanish joke makes sense in English)   ojo

Online Jeff G

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Re: good energy
« Reply #21 on: September 10, 2014, 10:57:02 PM »
When you said before that you had recently got another opinion ... was this an independent second opinion with doctor that did not have any ties to the old doctors who botched you surgery ?

Im not sure how cd4 counts figure in with the stem cell surgery you had but if I were to have surgery of another kind my recent 580 cd4 count would be deemed good enough and the fact that I once had 60 t-cells would be irrelevant . I guess I still do not fully understand or accept that your current cd4 count would factor in this way .

Online Tonny2

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Re: good energy
« Reply #22 on: September 10, 2014, 11:49:31 PM »


   Thanks Jeff G...you know that you and I have more of less the same numbers?, even in age, I'm 52, you are 52...you had 60 cd4, I had 20, now you have 580 and I have 538, I wonder wath is your cd4%?....the problem is not the surgery, the problem is the treatment after the surgery, the immune-suppressant that I got to take for life....bubba53 gave me the name where he got his transplant, I will call and find out what is their protocol...I asked bubba abou his number during his surgery and I guess he forgot to answer me...but I really appreciate you being concerned for my vision, but I'll be ok, if I can't have the surgery I will learn Braille and do whatever I has to do to keep going, I have a mother and a nephew that depend on me, and they give enough gasoline to keep my little machine running..ah, I forgot about my little dog, he needs me too...gracias otra vez amigo Jeff, I saw somewhere in here, that if there were a like botton, me too, will be pressing it    ojo

Online Jeff G

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Re: good energy
« Reply #23 on: September 10, 2014, 11:52:42 PM »
We will just have to keep the faith good things will come our way .

 


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