Tuesday, August 19, 2008

Fairview

Several readers have asked today about the hospital "Pepe" was allegedly staying at - Fairview at the University of Minnesota. We weren't aware it had been mentioned, but looking at caches shows it was. The hospital was not only used, but greatly abused, and readers were asking if there was a possibility for a defamation suit. There were many instances where the care there was questioned, even by FOP.

Monday, June 2, 2008
Truth

It has been another trying week for Pepe. For three days, she was vented but not making much progress. At the time of the intubation, her PaCO2 was well into the 90s, a record for her and nearly impossible to bear. Her O2 sat was 82, her fever 103. She resisted the vent as always, but numbers like these and the suffering they cause eventually have their way. By the second day, her PaCO2 was still in the 70s, and she became concerned that she wasn't bouncing back as usual. Then she reminded herself that she had much more ground to cover this time, having let the CO2 levels rise so high, and toward the end of the third day, her values began to look encouraging. The next day the doctors pulled the vent. So Pepe is nearly tube-free now -- sans chest or breathing hoses -- but her respiration remains labored and her fevers high, sometimes over 104. Yesterday, one fever spike prompted a grand mal seizure, an obviously frightening event, though one Pepe doesn't remember. In addition, she discovered her PICC line was infected, possibly leading to more sepsis. Lab cultures are growing. Today she met with her CF doctor to demand more answers, more aggression, and more ideas. Why are her sensitivities three weeks old while she's spiking 104.5 fevers? What, if any, is Pepe's pathway out of this mess? Through whose OR? Wednesday she meets with the transplant team to discuss what it actually takes to get new lungs at Fairview. None of this badgering is Pepe's style, especially when she feels like hell, but this is the Week of Truth. Let's send her the strength and confidence to be able to get the answers she needs.
***
Sunday, June 29, 2008
Unspeakable

Pepe was vented at 3 this morning after her doctors let her choke on her own lungs for over three hours, listening to all her monitors screech, refusing to help. It was an awful night, very nearly the final night -- too sad even to detail here. Too sad and too screwed-up for words. Sorry.

***

Sunday, July 27, 2008
Day Twenty-five

Sorry to report no improvement tonight. Pepe is in a great deal of pain, the worst thus far. For some reason, the weekend staff is skeptical of her complaints, contending that she is experiencing morphine withdrawal rather than legitimate pain. This far out, they say, such discomfort is abnormal. But Pepe did not have a normal transplant, which alone would be liable to cause substantial pain three weeks out. Instead, she was cracked open four times, the last time not long ago. She has had eight chest tubes -- over a small being's surface area -- and still retains three. And of course, she has incisions she has yet even to see or know the nature of. We can tell from experience, from the accuracy of Pepe's descriptions, and from the brute reality of what her body has endured over twenty five days that her pain is real, unembellished, and that she is on the edge of sanity for that single, entirely understandable reason. She is neither weak nor a drug-seeker. We've witnessed this over many months, when Pepe's moribund cystic lungs disallowed her from taking even sedatives during invasive procedures, let alone pain meds. She has proven her mettle. This is still your tough little nut, and she is resisting bravely as always. But she is miserable. She is suffering.

Tomorrow, she will take up the issue with her primary doctors and hopefully get some relief. Often it's a simple matter of exchanging one narcotic for another or adjusting doses. In the meantime, Pepe must get through the night. Her fever is way up, 103, probably an indication of the stress her pain is causing. Her O2 and PaCO2 are unchanged, 90 and 53 respectively. She is on ten liters via cannula, though she is having some trouble breathing through her nose. There was no X-ray today, so we'll learn the status of her pneumonia tomorrow, hoping for some improvement from the new drug cocktail. But for now, there are hours to overcome, a new narcotic dose at 2 am, and with luck, some sleep afterward. This is an incredibly tough process. It almost has to be experienced to be believed. Maybe that's one of the problems this weekend. But Pepe is -- entirely of her own volition -- committed to seeing this through with poise and dignity, despite whatever disbelief she encounters. For this, we stand in admiration. But we wish her more comfort and rest tonight.

We have not contacted the hospital, and don't know anything about the requirements for a defamation suit, or if they would pursue one. One reader did contact Fairview, though, and asked us to share their email as a post:

I simply wish to alert the medical staff of an online scam. For many months now, a girl who went by the name of "Gina" and her friend, Paul have been blogging about Gina's health crisis with cystic fibrosis. Many readers believed her to be in the care of the University of Minnesota. The posts were painfully descriptive, detailing the struggles of a girl seemingly on her deathbed. The site has since been shut down, but it was friendsofpepe.blogspot.com and entries can be recovered as the operator of the site, Paul, did not secure the postings.

"Gina" relayed information to Paul that made the medical staff seem incompetent at times. So far it doesn't appear anyone has turned down a transplant because of her scheme, but people have been thinking twice about the level of care offered at your facility and I think you have a right to know. Please forward this along to whomever it may concern.

The Google spiders are finally hitting the Friends of Pepe site, and pages are beginning to disappear. Before they do, we pulled down the second picture on the Friends of Pepe site, and are asking for anyone who might know her to identify her. We're not sure this is the same person as in the head shot used on the site:

20 comments:

Lucy said...

I totally agree that this site made the hospital look incompetent. I didn't start reading it until July, so I didn't know what hospital she was supposedly in. I saw some posts in the guestbook from people in other countries, so I wondered if she was in another country with sub-par care! My son had a lung transplant and I continued to read unfathomable things happening, and I thought that those doctors handle things extremely differently than they did at St. Louis Children's. I could hardly believe it, yet I did! When she was supposed to be in extreme pain that weekend I hurt so bad for her and knew my son never had that level of pain and I could hardly think about it....but I prayed for her when I did.

Karen said...

Lucy,
Hope your son is doing well! To me, organ transplants are just incredibly miraculous.

Kat said...

My own son was at the U of M Fairview (upstairs in the PICU, unit 5C) and my cousin actually worked in the ICU which is unit 4C of that hospital until sometime last year. Obviousely due to Hipaa laws she would be unable to give me any information even if she knew it but it makes me sad that Gina would defame a wonderful hospital, a hospital that gave my own little boy the chance to live. The flew him via private jet from Wisconsin and every nurse and doctor treated him like thier own.

I know a little boy who received a double lung transplant at the hospital while we were there, we shared a room with him and he did wonderfully. I would hate to think that someone might not choose that hospital because of a lie.

Kat

Karen said...

I was one who fell for every word G said--but I do remember first thinking that the hospital was performing miracles, bringing her back from the brink of death, and then they seemed incredibly cruel by not giving pain medication and then completely incompetent, by not being able to identify the pathogens that were making her SO ill. Glad to know that that part was made up, anyway!

jz101 said...

Thank you for posting my email, DWT. I will inform you if I receive a reply from them.

I figure if we can't get very far on the financial or emotional fronts, the hospital whose name was soiled would certainly wish to remedy the situation as best they can.

jz101 said...

Oh, and I linked them to both FOP and DWT. Since FOP is largely inaccessible now, I copy & pasted the entries you've posted directly. Just a heads up to keep your eyes peeled for anything that may come your way.

jz101 said...

And I just feel the need to add that I am now of the opinion that Paul is innocent and has been along.

No animosity here, man. : )

noname said...

Some people owe the skeptics an apology as some bad things were said about them i.e. they should be strangled and are evil people.
Would someone please check out this site: http://www.xanga.com/nancybratt
This lady has been dying for 10 years and people have been sending her on trips, sending presents and money. I'm sure there is something going on with her, but the fact that it has been so long and she keeps being given a short time to live but never dies and the fact that the site is used for such monetary gain (nothing like CFhusband) doesn't seem right. Also the mother and her write the same way and both spell words like "painful" and "wonderful" with two ll's (painfull). I know there's enough to look into with Gina but I'm just wondering if I'm the only one that is skeptical about this.

ygtbkm said...

I posted this several days ago, but Paul also mentioned Fairview-U of Minnesota in a post about "Pepe" in his own blog (clamshellmuni.blogspot.com), months before FOP was created.

That's one reason I believe he was duped...

ygtbkm said...

noname @ 11:54

Small world... X-Files fan, right?

ygtbkm said...

I assume Paul/clamshellmuni has submitted an urgent removal request for FOP pages to be removed from the Google cache... If so, everything will disappear within a week.

Otherwise, a copy of the deleted/private pages may remain in the cache for up to a year.

The Yorkshire Rambler said...
This comment has been removed by the author.
My3SonsMom said...

Just curious what everyone thinks Pepe/Peanut/Gina planned on doing in the future? Do you think Gina was going to have Pepe die because eventually she would've had to get out of the hospital?
This is so bizarre.

Jenn R said...

That's a good question, I too have wondered what might have happened if she weren't busted. Would the docs have found another set of lungs or would she have been killed off. I don't think she would have been killed off personally, she was emotionally vested in Paul...I don't think she would have cut ties with him as she "loved" him. I honestly think she would have prolonged this, perhaps returning to her ranch and blogging about her horses etc...

Artie said...

I used to work for a medical group at Fairview, though not the U campus. I was also surprised at times at the level of care I read about on FOP. I've had friends in the hospital who weren't treated well (not that particular facility), but I know they have some truly phenomenal doctors there, and it was really scary to think they would let someone choke on their secretions, not suction frequently, and let the monitors screech without trying to help. Those are the types of things that would make me choose a different hospital, that's for sure! I hope Fairview does address this.

spleeny21 said...

It's funny because it always nagged at me that the people in those two pictures did not match up. The dog picture and the face shot. Everytime I'd log on I would mentally note that they didn't look like the same person. Why this didn't send up some red flags for me, I'm not sure. I don't have enough medical knowledge to have spotted the inconsistencies in the story, but I noticed the picture thing every day and just let it go.

I'm kinda laughing at myself for not asking questions every time I took note of that.

curecfnow said...

Spleeny21,

I felt the exact same way. I remember the first time I ever logged onto FOP..I thought one picture was Pepe and one was a "friend of Pepe". Every time I looked at the pictures I just thought it was odd...but who was I to question?

Debi said...

Isn't the picture MIA!! It says in the name of the picture. That was my hold back. To me its obvious.

Deron Arnold said...

This is what makes me so mad...and relieved. I am listed at Fairview and am at or very near the top of the list for lung transplant. As I was reading Gina's blog, I was freaking out.

I'm so relieved to know this wasn't true. Thank you, to your blog and the efforts you have done to exposing these lies.

I want to add that I have every reason to believe in the excellent care at Fairview. My infant son had a successful complex congenital heart defect repair, and I have had hospitalizations and procedures.

I would like to know a little more about the history of the uncovering of these lies. I am a medical doctor (pathologist), and although I thought some things strange, I mostly bought the story hook, line, and sinker. The parts that really seemed unlikely I figured the patient (or family) was just embellishing.

What made you suspect it and what were the initial things you did to confirm it?

Again, I want to thank you for the peace of mind you have restored to me.

Sherry said...

I tried to leave a message before but it did not go on.I have nothing good to say about the UofM FAIRVIEW.I have less to say about our doctors there.We were there 65 days of hell. My boyfriend went in to get a kidney/pancreas transplant.And it was a horrible experience.64 days and we walked out.I wouldnot go to the U of M if I were dying. more info I am at se8332@yahoo.com