Quantcast

Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
July 29, 2014, 06:16:47 PM

Login with username, password and session length


Members
Stats
  • Total Posts: 632294
  • Total Topics: 47880
  • Online Today: 266
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: NIH2 Travelogue, Part I, with Love, from Zeph  (Read 3072 times)

0 Members and 1 Guest are viewing this topic.

Offline zephyr

  • Member
  • Posts: 459
    • Zephyr L.T.N.P. Foundation, Inc.
NIH2 Travelogue, Part I, with Love, from Zeph
« on: June 20, 2006, 05:13:47 PM »
To Everyone,

After catching up on my sleep last night, I have a much clearer mind with which to share my NIH2 story with all of you! Thank you for being so patient with me as I collected myself yesterday (as well as completed the third and final 'interview' session with the reporter from my local newspaper and attend a Women's Support Group meeting in the afternoon... ;D).

The flight out from Sacramento early last Wednesday morning was great...this time, instead of stopping at several different terminals, I got to stay on the same plane with only a short stop in Vegas! I'm happy to say that we had a pilot who shared information about particular land-marks and impressive sights as we cruised at 41,000 feet......I was snapping photos from the air and was delighted to know what I was looking at! (I'll share some once I get them downloaded...) The weather was perfect, until we approached Virginia/Maryland, when the tell-tale clouds appeared from what remained of Hurricane Albert, first as 'cotton-balls' and then as huge thunder-heads...magnificent...the purest white against an azure sky I've ever seen. We had been warned by the staff that turbulence might be a problem, but the pilot kept us at that high elevation to avoid it, no problems.

It was terrific for me to see the 'green belt' again as we descended into Baltimore; I had been so pleasantly surprised by all those trees from above when I first visited in April. Now the canopy was in it's full glory, burgeoning and robust in about 15 different shades of greens. Lovely!

Minh had classes to teach that afternoon, and had mentioned the night before that I would have to hang out at the terminal for an hour or two for him to arrive to get me; it actually gave me time to aclimate, get some lunch, and people watch (which I love to do). I left a message for Paul that I was there, to call me when he landed, Minh and I would come to get them. (On our last day, we all realized that they were landing at the Dulles Airport, not in Baltimore!) Minh showed up earlier than expected, and what happiness I felt to see and hug him again! Yippee!!! When we did not hear back from Paul, we assumed that he and his partner, Wade, had grabbed a cab to get to their hotel in Bethesda, and went directly to Minh's apartment.

Was I ever excited to meet Minh's two 11 week old kittens, Jasmine (a calico) and Basil (an orange tabby)!! I am a cat lover, (be nice, Matty!) and got right down on the carpeted floor to make friends with the little ones. Tentative at first, their curiousity got the best of them, and pretty soon, they let me scratch their chins and stroke their fur. They were particularly interested in my suitcase, because my cat, Keena, always lays on top of it when I bring it out for a trip, so her scent was all over it for them to smell! I guess that closed the deal for them, cuz after that, I was "Auntie Zeph" and soon had them crawling all over me! LOL! Too cute.

While sharing a quiet dinner together in the apartment, we did finally hear from Paul, they had landed late, but all was fine, we'd meet in the morning at their hotel to go to our first appointment at the NIH. I had brought a small gift for Minh from my house, a porcelain statue of a Japanese person holding a jar aloft, with a lotus bloom pouring out. He told me that it signified a Buddhist 'angel', unbeknownst to me, and rather appropriate, since I have taken to calling him one! It sure felt good to go to sleep that night, it had been quite a day for me. And, thank you, Minh, for giving up your bed for me, I slept so well on it!!

So, the long awaited meeting arrives with the new day, and my heart is pounding as we approach the hotel and give a call to let Paul know we are in the lobby. Out of the elevator he comes, looking relaxed and fresh, Birkenstock's and jeans, and blue, blue eyes!! I throw my arms around him and hold him tight, tears welling up in my eyes, the day HAS COME!! He hugs me back, tight, and tells me "It's ok to cry!" LOL!!
I offer him a wrapped gift-box, too, and watch as a big ole' smile happens on his face when he sees what it is, and what is has inside. (I'll let him tell you about that..... ::)).

Initial greetings over, it's time to scoot over to the NIH, and let Minh get to the University for work. The clinic receptionist, Sonora, greets both of us by name, and Mary McLaughlin, Research Co-ordinator, meets us in the room where our weight and blood pressure stats are done. She has a hug and smile ready for each of us, with news that we will be meeting Dr. Steve Migueles, one of the main research physicians that morning, after our blood donations and other tests (for me, an EKG and physical) have been completed. (My heart is in excellent shape, by the way... ;)). All the while, Paul and I are involved in one long conversation, breaking only for directions and trips in the elevator to the various departments within the clinic. It was like trying to fit in the exchange of our whole lives in between procedures! Ha!

I'm ushered into Mary's exam room, and was having a discussion with Margie, who will share Co-Ordination duties with Mary soon, and I hear a light knocking on the closed door. I stand up, open the door, and see a very attractive young man standing there. (VERY) He introduces himself as Dr. Migueles, and tells me how much he appreciates my being there, that it's an honor to meet me. (Blush!) I thank him for his hard work with the research, I represent a wonderful group of people who are counting on him!  What ensues is an incredible 2 hour meeting between us, and an amazing sharing of information from him about the research going on, what is it they have discerned about my 'cells' and what is this 'resistance' I apparently have? He draws me a sketch that details some of what my fighter cells are doing when exposed to the HIV virus, (light bulbs going off in my head) as I understand more about the uncommon way my CD4 & CD8 cells mutiply to fight the virus, and why this makes me different than most individuals infected by this insipid virus.  He reveals to me that in addition to my membership in the "B57" gene family (the resistant group to the Black Plague, European descent), they have discovered I carry a 'double 6' gene, inherited by both parents, that is something unique. (Still being looked at for it's relationship to viral resistance.)

I tell him a bit about the transformation I have gone through since last fall, when I was connected to Paul and our 'research' sister, Pam, in New York, and her introduction of the Aidmeds website to me, and the incredible support I have lived with from all of you for nine months, including donations of funds from you to make these trips possible. He listens to me intently (with those deep brown eyes...sigh) as I tell him about the resolve created inside of me by all of YOU, to finally break my 14 year silence about my positive status with my local newspaper. I tell him that without this family, it might have been years before I arrived at this place of personal empowerment, that AM changed my life FOREVER. (My tears were graciously forgiven by both of them....I could not help it, as I sat there and thought about certain ones of you and your daily struggles with this disease.... :'()

I'll tell you, an absolute human connection was forged that day between Dr. Migueles and I. He has devoted his life to the study of this disease, coming on board the staff of NIH in 1997. He is a wonderful man, and a brilliant teacher, his anxiety obvious to crack the code that resides within this virus. I felt like I was in the presence of the ONE who just may do it, honestly. I just don't have the words to properly describe the way he spoke to me, the deep conviction he feels, the sleepless nights this guy has experienced as he pushes himself to derive an answer. His energy is astounding, and it was my DISTINCT HONOR to have him share so much of his Thursday with me.

Guys, I'll have to impart this story to you in a series, because my brain is on overload right now. I wish I could mind-meld with all of you with this, it would be so much faster.  I'm going to rest a bit, listen to some music for a while, and I promise to pick up where I left off, later. K?

It's an incredible journey, and I thank you for reading!

With all my love,

Zephyr









"It is character that communicates most eloquently."

Offline allopathicholistic

  • Member
  • Posts: 3,258
Re: NIH2 Travelogue, Part I, with Love, from Zeph
« Reply #1 on: June 20, 2006, 05:27:31 PM »
He is a wonderful man, and a brilliant teacher, his anxiety obvious to crack the code that resides within this virus. I felt like I was in the presence of the ONE who just may do it, honestly.

Loving this. Thank you. I'm hanging on every word!

Offline The Canuck

  • Member
  • Posts: 628
Re: NIH2 Travelogue, Part I, with Love, from Zeph
« Reply #2 on: June 20, 2006, 05:37:12 PM »
Zephyr,

Many thanks for your travelogue. This is really great you can be part of this research as you never know, the keys to unlock the mystery might be within your body. I have been pretty quiet about your different trips but definitely read them all with great expectations.

How interesting the black plague of yesterday could be the answer of today's black plague ( HIV ). Zephyr, nice to read you only have a double '' 6 '' gene and not a triple '6' one...I don't want to be part of the OMEN in Montreal.  ;)

Kidding aside I'm looking forward to meet you in Montreal.

Best Regards,

The Canuck
( Did Ric says '' Nous Allons à Montréal '' ?...Yes he did...and several times too )
« Last Edit: June 20, 2006, 05:44:26 PM by The Canuck »

Offline water duck

  • Member
  • Posts: 397
Re: NIH2 Travelogue, Part I, with Love, from Zeph
« Reply #3 on: June 20, 2006, 05:43:19 PM »
Thank you so much for sharing, but , dear Big Sis, don't force yourself & try to do it all at one go.

 :-* :-* :-* :-* :-*

Rest dear one, u had fought already a great battle for us, we (i hope) r eternally gratefully !! :) :)

Siang

Offline Eldon

  • Member
  • Posts: 2,664
Re: NIH2 Travelogue, Part I, with Love, from Zeph
« Reply #4 on: June 20, 2006, 06:19:53 PM »
I see that you had a wonderful time. You Paul, Minh, and the Doctor bonded well. What an experience.

Eldon

Offline Basquo

  • Member
  • Posts: 3,251
Re: NIH2 Travelogue, Part I, with Love, from Zeph
« Reply #5 on: June 20, 2006, 06:47:19 PM »
Thanks for the story, told with such smooth verbage, I imagined I was there!

Interesting, about the B57 gene--about a month ago my mom told me a story about the ancient Spanish branch of our family, how an entire village was wiped out by the plague except for us...I'll have to get her to tell me again so I have it right.

Get some rest, dear, and finsih the story soon!

Creighton

Offline Teresa

  • Member
  • Posts: 1,753
Re: NIH2 Travelogue, Part I, with Love, from Zeph
« Reply #6 on: June 20, 2006, 07:29:36 PM »
You and Paul are amazing!!

Cant wait to hear the rest of your adventure.

Hugs
Teresa
Hubby HIV+ 5/5/06
CD4:320
  %: 26.7
 VL: <20
Atripla (started it 8/24/06)
 

Offline AlanBama

  • Member
  • Posts: 3,604
  • Alabama: the 'other' 3rd World Country!
Re: NIH2 Travelogue, Part I, with Love, from Zeph
« Reply #7 on: June 20, 2006, 08:53:23 PM »
I loved reading about your trip, honey.   As always, I'm proud of you and all that you are doing.

Love,

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline J.R.E.

  • Member
  • Posts: 7,099
  • Joined Dec-2003 Living positive, since 1985.
Re: NIH2 Travelogue, Part I, with Love, from Zeph
« Reply #8 on: June 20, 2006, 09:05:11 PM »
Hello Zephyr,

I may not respond often, but I am really enjoying reading your detailed posts, and yours and Pauls experiences. Thanks so much for sharing !! And Minh is quite special indeed !!


The Best to you------Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline anniebc

  • Member
  • Posts: 5,937
  • AM member since 2003
Re: NIH2 Travelogue, Part I, with Love, from Zeph
« Reply #9 on: June 20, 2006, 10:25:39 PM »
Hi Zephy

Thanks for sharing your amazing journey with us..it's always great to read your posts...you have a way of taking us all on the journey with you.

((hugs))
Jan :-*
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline eirin

  • Member
  • Posts: 80
  • Member since March 2005
Re: NIH2 Travelogue, Part I, with Love, from Zeph
« Reply #10 on: June 21, 2006, 02:47:04 AM »
Dear Zephyr,

Thank you for sharing your wonderful story, it is really exciting to hear
that there are people out there determinded to find a cure, and that you and Paul are a part of the possible solution. Looking forward to read the
next chapter of your adventours.

Bless you for all you do for us!

Lots of love from Eirin  :-* :-* :-*

Offline jkinatl2

  • Member
  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: NIH2 Travelogue, Part I, with Love, from Zeph
« Reply #11 on: June 21, 2006, 03:13:37 AM »
And to Zephyr's silent (on the board) detractors:

http://forums.poz.com/index.php?topic=1056.0


Seriously.
"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Jeffreyj

  • Member
  • Posts: 1,403
Re: NIH2 Travelogue, Part I, with Love, from Zeph
« Reply #12 on: June 21, 2006, 03:45:23 AM »
I am enjoying this very much. You are a courageous woman. you Go Girl...Can't wait to hear more!
God Bless You!
Positive since 1985

Offline JohnOso

  • Member
  • Posts: 816
Re: NIH2 Travelogue, Part I, with Love, from Zeph
« Reply #13 on: June 21, 2006, 05:03:05 AM »
Zeph, honey, you have such a gift with words.  I sat down at this computer ready to fall asleep, then I clicked on this thread..and ZING...I'm awake and anxious to hear more, lol!

Take care,
John
 
(see?  told you it would be hot when you got back, sister!)

Offline cubbybear

  • Member
  • Posts: 510
  • Joined August 2005.
Re: NIH2 Travelogue, Part I, with Love, from Zeph
« Reply #14 on: June 21, 2006, 06:36:44 AM »
Thank you Zephie for everything that you do for us, you are helping everyone across the globe.

xxx
Matt
There's a bear in there!
Positive since 2000
Diagnosed 17/9/2005 CD4 35 VL 293,000
Meds 23/9/2005 Sustiva/Truvada
Currently CD4 232 VL Undetectable

Offline OzPaul

  • Member
  • Posts: 410
  • a very blessed 29 year ltnp
Re: NIH2 Travelogue, Part I, with Love, from Zeph
« Reply #15 on: June 21, 2006, 11:45:44 AM »
Dear AM Family

Firstly, a BIG Thank You to my 'sis' and kindred spirit Zephyr. It has been a huge blessing in my life that we have found one another ( Thank you Florencia).

I am a man generally few words and am grateful to Zeph for having the eloquence of words, heart and spirit to have captured our trip so beautifully. Our weekend was amazing and Minh is the ultimate friend, I could never speak highly enough of him. It was a tremendous privilege to have met with Stephen Migueles at the NIH. He is a man of incredible dedication and passion to our cause.

Our fledgling Zephyr Foundation has given us the ability to continue in our efforts to participate in the research projects that Zeph and I are involved with. Many thanks to our AM family members who contributed to the Foundation and the many more whose good wishes and kind thoughts sustain us as travel about participating in these studies.

Zephyr and I are, as many of you know, committed to helping in any way we can to find a cure or vaccine. We have and will continue traveling many miles in our united quest. There are others here who have not yet spoken about their participation, they are also to be thanked openly, warmly and with great gratitude.

With Peace and Love
Paul

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.