So much has unfolded within the last few days. I recently learned that the FOP blog was a farce, a great big, fat lie. Gina, who was supposedly post transplant experiencing many life threatening setbacks, is not real. Not real in the sense that she is not a cystic nor ever received a transplant. She does exist in the physical sense, she rides her horses Gracie and Chipotle somewhere in MN and is healthy.
What happened? Her blog came under fire after her latest update saying that her doctors were relisting her for new lungs as her donor lungs were failing her. The problem with that is that she had said that she was septic with massive, unresolving pneumonia, no way would any doctor or center transplant her. Readers became very skeptical and called her on it, she then asked Q (who reported her events to the world for her) to shut down the site as she was claiming that she was being stalked and feared for her safety. Q, being the good friend that he was, complied. Unfortunately, he was dragged into her web of deceit and his character was questioned as well being that he was the author of the updates.
I guess I could say that I knew it was coming...things were just too extraordinary in my book. I followed the blog, much like thousands of others, from its initiation. The original purpose of this blog was to raise money to buy Pepe (Gina) a Wii for Christmas to help her cope with the long days in the ICU. It was a noble cause and I contributed to the fund gladly at the time as I know how painfully lonely it is to be confined to a hospital room day after day, looking at the same, sterile walls. As time marched on, Gina experienced many setbacks, seemingly one after another. I prayed for her, shed tears in her name for her to get better....She reportedly had 6% of her lung function left and was barely clinging to life it seemed, all the while being repeatedly vented.
I started to get suspicious when things just didn't make sense. I was a critical care nurse before I became too ill to work. I couldn't help noticing the incredible amounts of oxygen she was put on (30 liters?...the meters don't go that high even, she was getting this amount via a nasal cannula as well) along with the repeat vents. Someone that unstable would probably get a trach to avoid so much trauma to the trachea. Another thing, even though she was febrile most of the time (with temps of over 103) she felt well enough to chat online. I can tell you from personal experience, I don't feel like doing anything when I am that sick. I just lay there, praying for relief...I can't speak for everyone, just for myself though.
Another issue was when she finally got listed...I remembered reading that she weighed only 78 lbs and was being sustained on merely crackers and Sierra Mist as she had lost her G-tube awhile back. To be listed, doctors put a person through many tests to make sure that they are indeed strong enough to survive the process of transplantation. Poor nutrition has poor outcomes so docs will do everything in their power to try and get the patient as healthy as possible in that department. I would have thought that the doctors in her case would at least give her nutrition either by TPN (total parenteral nutrition) or via a nasogastric tube to bulk her up.
Her sepsis also had me thinking. I do know that doctors will transplant someone if their infection is localized to the lungs and not anywhere else. I remember reading that she had full blown sepsis, was placed on ECMO which is unbelievable in itself (doctors don't put people on ECMO who have no chance for recovery) and then by some amazing miracle, her new lungs arrived after 4 long years of being on the transplant list.
Such an elaborate story from someone I "thought" I knew...at least in a cystic sense. She had been part of the CF community for over 2 years, befriended many, especially Q who spent many sleepless nights on the phone with her trying to comfort her, played with their hearts only to stomp on them and break them.
After FOP was closed down, another blog was created to expose Gina as well as Q called Down with the Trolls. I must say that I am absolutely shocked and appalled as well by the overwhelming evidence gathered that showed that FOP was a farce beyond a shadow of a doubt. Last night, Q (Paul) addressed the CF community and conceded that Gina duped him, that FOP was a farce and that she admitted that all of this was not real...none of it.
I am hurt..I have spent some sleepless nights praying for this girl, shed some tears even and asked my relatives and friends to pray for her as well. There wasn't a day that went by (even while I myself was lying in a hospital bed fighting)that I didn't think about Gina, hoping that she made it through another day intact and without pain. All of my intentions for a fictional cystic....unbelievable. I can only say that my eyes will be wider and more alert these days, a bit more wise to happenings on the web.
Rest in Peace Aunt Marybeth
10 years ago
7 comments:
I couldn't have said it any better myself. Those things you mentioned that had you iffy, had me iffy too. But I am not keen on hospitals and all that end-stage info so I just assumed that it was all true.
I too told my family and friends to pray for her. I will not tell them the latest happenings and I hope that they will never ask about her. I feel foolish and stupid and like a moron for putting myself out there one night with Cindy because "Blake" asked us to help defend Pepe in Dog Chat.
I can't help be wonder if there are any more imposters in our community. I don't like that feeling, I liked trusting everyone. I hope that she is the only one :)
It is all so sad isn't it Amy? You know what else bothered me, her flash pulmonary edemas and how they were treated. I never suctioned off lungs with edema like that as a nurse, we usually gave medications like lasix to remove fluids from the lungs. I have been through FPE myself a few times due to fluid overload and was treated with oxygen and tons of IV lasix (diuretics) to pee it off. Lasix works quickly so that would be the first drug to use. There are others, but that is first.
Her also having FPE's while sleeping was very unreal...you literally can't breathe, it feels like you can't get any air at all...no one sleeps through this and has fluid bubble out of their mouths unless they are on a vent and unaware of their surroundings.
Also, a heart cath would not have been done before an echo. An echo would have been enough to determine that there was right heart failure. Then if needed, do the cath because it is invasive.
So many things coming to my mind now...
I wondered as well, when it was mentioned she was at U of MN Fairview -- one of the top CF centers in the nation and she was supposedly getting such shoddy treatment. Then they mentioned they were sending her cultures to Toronto -- Sounded strange to me -- would think U of MN would have an extensive ID department, or why not send it to Mayo or Jewish in Denver. But I pushed those thoughts away because I'm not all that familiar w/transplants or that CF center. One would think the people who go to that center or who have gone would've questioned it.
As I posted on the board, I think CF and tx prepares us for the improbable. I saw a girl transplanted while on ECMO. I've talked to ppl who were on 25 or more liters before transplant. I know a guy who was in a coma a month before and three months after his transplant. I saw a girl suffer from repeated FPEs that they did have to suction. (Gina, according to her story, was also put on Lasix.) I myself was down to 12 percent with a BMI of about 15 when they transplanted me. I was way outside the window, but they went ahead with it. After, I was chatting with you a few days out of ICU and would have done so in ICU if I'd had my computer. Yes, I was baked out of my mind, but I wanted to connect and tell ppl I had lived.
It's now established that I'm a fool, but I grilled G for details nighty -- or "Blake," if G was vented. Some things seemed far-fetched EXCEPT in Transplantland. Perhaps the fishiest part of all of was that so much of her story matched what she knew I'd seen or experienced myself -- the massive blood loss, the ruptured PA, the FPO ripped wide by PA pressure, etc. But again, the lady next to me on the tx floor had had eerily similar complications, so I knew I wasn't unique. On top of this, I HEARD the suction, heard the nurses bothering about and the whoosh of high-liter-flow O2. I realize sound effects aren't hard to conjure for someone obviously as tech-savvy as G, but there was no reason for me to question it.
That is how I continued to believe G. Further, I didn't see any apparent motive or even any capacity for such an elaborate scheme. I'm naturally trusting, but even lacking that, I saw no logical reason or way for things to be other than as presented. D'oh, I was wrong. But so were all the trusting ppl who gave her cf.com thread twice the volume of my tx thread, or all the nice readers who wrote to FOP every day. We all saw parts (yeah, I had some red flags -- like why couldn't I visit?), but no one saw the whole till very late. If they did, at least, they didn't clue me in.
Bitty, don't lose your trust. I'm not letting this ruin mine. Maybe the lesson here is not to doubt more but simply to observe with more skill. "The best [policy] is to watch [people]," Suzuki Roshi wrote, "just to watch them, without trying to control them." Or maybe, perhaps, without trying to "save" them. Who knows?
Thanks for the thoughts, Jenn. <3
Q
Thanks for writing here Q! It is good to hear input from a person who has been there and seen all of the complications of tx first hand. I have only heard of them (the hospital I worked in was fairly small, not a tx center), you lived them my friend. I guess anything is possible in medicine, but she seemed to have so much going on...one thing after another, increasingly extraordinary almost superhuman actually. It was as if every complication possible was happening to her. I think that what finally got me really thinking was the decision to tx her again despite being massively septic. Apparently, I was not alone with those sentiments as the flaming really kicked after that post.
Amazingly, even when people were flaming her in the last entry of FOP, I initially stood up for her again thinking that there is no way that our Gina was capable of such lies (even though the logical side of my mind was throwing down red flags everywhere). I simply gave her the benefit of doubt....
Paul, I have to admit that I also thought that it was odd that she too had similar complications as you did during your tx...but possible because of the nature of her surgery and health at the time of her "translplant". I have to hand it to Gina, she fooled us all.
It makes me wonder how she got all of the information about transplants but then it occurred to me...she got all she needed through years of cruising the CF communities and blogs (she apparently belonged to the CF community for over 10 years, Blake much the same). Then google probably did the rest. The internet easily could have provided volumes of technical aspects of transplantation with a click of her mouse along with youtube videos of just about any medical procedure out there.
I wonder how she made all of those noises? Maybe she had them recorded to a CD...perhaps she googled hospital sounds and did just that. What amazes me is that she built this story up over such a long period of time, creating "Blake" who gave you details of the day.
I wouldn't beat yourself over the head too much Paul, like you said, why would you have any reason to disbelieve her? Why would any of us who had "known" her for years? She seemed genuine enough to me that is why I didn't really scrutinize her story closely, I just brushed it off like thousands of other folks because, well, this was Gina and we all knew her.
God Paul...you have such a wonderful soul and to think that someone did this to you makes me want to vomit and question humanity at times. What was her excuse as to why she did not want you to visit? No doubt, it was a very clever one...I personally felt awful for her and often wondered if anyone from the CF community visited her, she seemed so lonely in that ICU with just Blake and her mom at times with no other visitors (that also made me think...she had virtually no "physical" contact with others). I even felt for Blake when she contracted MRSA and had to be hospitalized...I felt that these two (Gina and Blake) had absolutely no luck at all...again, it was one thing after another even with the both of them.
I sincerely hope that she gets some help with this....there are never any excuses for hurting or deceiving people on any scale. I will pray for her on that level...that she heals mentally and that she spares anyone else of any further deceits online or personally.
Finally, I will pray for you too Paul, that your heart heals after such insult and deception. This incident has not made me paranoid (like I have seen some of the nonsense on DWT....analyzing punctuation, you gotta be kidding me!) but it has made me more aware that this could happen again. I truly believe that people are for the most part good and decent and are who they say they are.
Sending hugs...Jenn :)
Actually, Jenn, there was one further lie that never made it into FOP because it was "too difficult for Pepe to handle." Soon after talking about re-transplant, they decided against it, according to the story. So even that part added up. And remember, many of her commentators, One of whom runs a transplant support board, were suggesting retransplantation.
Yes, she could have done the research. But this required more. As foggy as she sounded, she was sharp as any syringe she described. She never flinched, never fumbled. I grilled her constantly, but she always knew the answer. She reported a WBC count of 45,000 and was concerned, but she'd just gone on Solu-Medrol, so I assured her the count was due to the med. Then she acted reassured. So even if she had the knowledge, she still had to ACT constantly. None of us ever caught her because she never fell out of character -- out of EITHER character, in fact.
Reading our chat logs with the knowledge I now have simply stuns me. How did she keep it up? I think you have to chalk it up to some rare, perverse gift.
Q
Wow Paul...I am sitting here with my mouth open in amazement. I often wonder how long she would have kept her act up if she had not been caught, also, what would have happened to her ultimately? Because she had been declined a second transplant, she would eventually succumb wouldn't she? She was so emotionally vested in you, I don't think she would have killed herself off, instead there would have been some sort of miraculous recovery to perpetuate her story and keep you in her grasp.
Sick eh?
In some twisted way, she should get an Oscar. I too find it amazing that she came up with answers on the spot with you, often pretty close to accurate. You are right...she had a perverse gift. Too bad she didn't put it to better use.
One thing that struck me, I believe that Gina actually became Pepe or Blake and became dissociated from reality. She most likely believed that she was Pepe, perhaps that explains her impeccable acting. When she was Blake, she was a totally different personality and sounded differently on the phone I am sure. She was the opposite of Pepe who was full of grace. Blake had a sharp personality (at least that is what I remember in chats) and had no qualms about confrontation. Pepe seemed more meek...
I am beginning to think that Gina had multiple personalities along with other issues...I am no psych but I can't help but think that perhaps this is the reason why she could act so well, she literally became Pepe or Blake and played out their parts to a tee.
Wild huh?
Hugs, Jenn :)
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