Friday, August 15, 2008

BLOG SCAM?????

So it seems like everybody is up in arms about Pepe/Gina's blog... I must admit I was SHOCKED when I found out it seems like everythings has been a scam... I tried to access her blog and couldn't understand why it said that you needed permission/whatever to read the blog, as I've been following it and praying for Gina for MONTHS now... her blog is/was even listed under my 'other very cool blogs', and I've mentioned her a couple of times...

So all of this seems rather confusing, and I'd be interested to see where this will end, because many people have donated money towards her cause. What I DO know is that 2 independant people I've talked to previously have had their doubts regarding the blog. Both of them were saying something's fishy, and that such a story can't be possible. I'm not sure if I wanted it to be true or not, because if it IS true Gina's been to hell and back, and if it wasn't true, is such a sickening thing to do and kills blog-credibitily and faith in humanity.

Here's what I DO know...
  • Paul Mooney, the author of Friends of Pepe has CF and had a lung tx, as far as I know.
  • His lungs are not doing well and he's very anti-transplant at the moment.
  • Paul's blog Transplantland (also listed under my blog-list) has also been closed down.
  • What kind of tx-centre would transplant someone on ECMO?
  • How can they consider a second transplant if the first one was such a disaster and she had such serious infections and high fevers?
  • How is it possible that her bloodgroup is a universal recipient, yet she waited 2 years for lungs, and eventually they REDUCED lungs to fit her??? JUST AFTER SHE WAS PUT ON ECMO?????
  • It is unusual for a blog not to have any photo's (except one, which is apparently not even Gina, but a friend of hers) etc.
  • Details of what hospital she was in was never given that I know of.

Hopefully the truth comes out soon... go to http://exposetrolls.blogspot.com/ to follow what's happening... If all of this is true, it's too sickening for words, and utterly disgusts me.

UPDATE: It has since been established that Paul Mooney was not part of this scam, but got taken for a ride by Gina/Pepe/who-ever she really is. It takes a real sick demented person to play on the emotions of someone who has been through what she was supposedly going through. Unfortunately Paul's internet reputation has suffered as a result of this now, and he has to regain his credibility. I wish him all the luck out there...

15 comments:

jen727 said...

Thanks for posting this, Alice. I'm glad to see a CFer's take on things. I've been following Pepe's blog and am extremely sickened by this as well.

Something else that strikes me as fishy: In her comments, you never saw anything like "Hi Gina, this is Jane Smith from high school!" or "Bob from work" or "Cindy from the horse community" or anyone who seemed to be from her life outside the hospital and CF boards.

But congrats on *your* great recovery so far!

Anonymous said...

Thank you, Alice, for responding to this weird situation.

Anonymous said...

Ditto! I do appreciate your taking the time to respond. It' such a strange thing--people swear they have met "Gina" and then others say no, she doesn't exist, it's this Gina who rides horses using someone else's picture....I think that SOMETHING is way wrong, but not sure who is really to blame.

But I am SO happy about your recovery--it is thrilling to see you doing all these wonderful things. My continued best wishes for you!

Emmie said...

Hi Alice, glad to see the lungs are doing so well and you've been on your first flight post-tx!

I've no idea about the Pepe/Gina thing as I only checked her blog occasionally. If its a true story then its incredibly sad if people are doubting her, but if its a con then its really sad too.

I do know of someone in the UK though who was on ECMO before their double lung transplant and also someone who was incredibly ill post-transplant and the issue of a second one being needed was raised during that period.

Not that this proves anything one way or the other but I thought I'd let you know. I've never heard of lungs being reduced in size for someone though as I'm sure thats impossible...?

Whatever has gone on, I feel sorry for everyone involved including Paul and Gina (and Pepe if she does exist!), its not a good situation from any perspective!

Anyway, the good news is how well things are going for you so YAY!

Emma xxxxx

Amy said...

I am with you Alice. I don't know where I stand. I have been following Gina for months, I know her from cysticfibrosis.com. I want to believe she is who she says but pieces don't match up. They haven't for a while. I hope that something/someone can shed some light on this and make us all aware of the truth. It's crap like this that gives blogging and all a bad rap.

I have never talked to you or met you but I read up on you constantly and I am so glad to hear you are doing well.

Prayers to you that you stay that way!!!! :)

Anonymous said...

I read Pepe's FOP blog for a month or so. My son had CF and two double-lung transplants, so I'll give you my 2 cents worth. I kept wondering what hospital she was in because I thought things were handled very differently than what I've seen. In hindsight, I can see that things seem "fishy."

Transplants can be done with severe infection as long as it's contained in the lungs only. That was my son's situation the second time. Also, it's very common for lungs to be trimmed down. This happens all the time with pediatric patients and it's not a big deal. However, some things fishy were that if a transplant was done while a patient was on ECMO, I'm 99.9% sure they would come out of surgery on ECMO for a while. Second, I've never heard of someone going on and off the ventilator all the time like that. One purpose of the vent is to reduce the CO2 so why did they keep taking her off before her CO2 was in control? Also, there was no mention of kidney involvement which certainly is a big deal after transplant. Also, things like saying she had to "get up" and get cleaned after the flash edema seemed strange. Nurses clean up patients all the time while they remain in bed and there's no doubt she would be extrememly, extremely weakened at that point. Eating the potato chips, the very precise drawings while vented (I think) and on pain killers. These all seemed out of the ordinary for someone that sick. My son was only sick enough to be on 15 liters of 02 for a short time before being vented to wait on tx #2. All he could think about was breathing and getting some relief. He was miserable and I know that could not have continued for long. br>If you Google clamshellmuni you can scroll through and see website after website selling stuff for Paul Mooney's transplant. His myspace account says he used to teach at a college until May 2006, but there's still a Paul Mooney listed on their website as a faculty member. I wonder if he's even for real.

I also noticed no one who signed her guestbook knew her, and I wondered why but didn't suspect it was all made up. This is too weird.

Best wishes to you! I'm glad you're doing well.

Anonymous said...

Hey Georgeous!
I've also been following Pepe's blog daily, (and yours)! I am devistated and shocked that anyone would pull off such a horrible scam. I am speechless. Just Speechless. Stay healthy!!
Charlotte, NC

drained in sj said...

Thanks for the comments. I have some medical background, and something always seemed 'not right' about Gina's blog. But, I wanted to believe.... so I let it be.

Anyway, your comments, and the posts, also give people who read a blog for months, somewhere to vent a little.

As always, I am so glad you are doing well.

Lou

Allison said...

Hi Alice,
I have been out of town for a week and was shocked when I came back and read on Nate and Tricia's website what was going on with Gina. I really never even thought about things not adding up, but looking back, I guess it makes sense. I don't know what to think, but thanks for throwing your two cents in. Oh, and btw, I was on ECMO for a few days before receiving my heart/lung tx, and I know that was somewhat common in the hospital I was in.

Anonymous said...

this is heart-renderingly sad and pathetic

evidently, Pepe confessed:

http://www.cf2chat.com/e107/e107_plugins/forum/forum_viewtopic.php?5544.last

Deron Arnold said...

Well, in a way I'm relieved. I am pre-transplant and very close. I was really feeling for her and at the same time, really dreading a potentially agonizing recovery of my own.

Her blog really scared me. Plus it was purportedly taking place at the U of MN (where I am listed).

But blogs like yours and CF Husband are a real encouragement. It's great to look forward to how great life can be post-transplant. I know there will be bumps but my spirits are lifted when I read what you are now doing.

Thanks.

Patyrish said...

Hi! I have been quietly following your blog recently. My sister told me about the "Pepe" blog and I went to read up. The more I read the more I was freaked. Like you I don't know if it's real or not.

If it's NOT real then I am DISGUSTED that people do things like this. Why on earth would you fake a condition on the internet? Especially a condition that people like you and Tricia have to fight and suffer with every day of their lives?

On the OTHER hand having a child with a true medical and developmental problem AND a blog about her, I would be incredibly HURT if someone suggested that I was lying. If her story is true can you imagine the heartbreak she must feel right now when she is already dealing with life and death situations? In that case I can understand why she would close down her blog to the public and make it invite only read.

I don't know what to think but I do know that the whole situation is sad either way.

Love and Prayers to you.

Anonymous said...

Alice
See e-mail please.
PL

Katey said...

Hi...i do have one comment about "what you do know": you can be transplanted on ECHMO. I don't think transplant centers like to do that, because its risky and more than likely you aren't going to live through it anyways...However, I was transplanted on ECHMO. I was only on it for about 24 hrs prior to transplant, but still, it is possible.

I'm not saying this to prove the whole Gina/Pepe thing, as I am in awe that it was a scam and are sickened that the CF community has been led to believe something untrue.

Cara said...

Hey Alice,

I've been following your blog for a while now (I'm a CFer too) and I had to comment on this. I'm just as disgusted as you are by the situation and I can't even begin to imagine how someone could be so cruel. I wanted to thank you for being an inspiration for us CFers, and for providing REAL insight as to what is it like to experience a lung transplant. Know that I'm praying for you!

Cara