SITE UPDATES | SURVIVOR BLOG


May 3, 2010 - Modern Healthcare Magazine

STALLING STATES
AHRQ's infection program sees slow enrollment
by Maureen McKinney

DOWNLOAD PDF (8.05 MB)

April 19, 2010 - Modern Healthcare Magazine

FOCUSING ON INFECTIONS
Hospitals' progress slow, reports says
by Maureen McKinney

DOWNLOAD PDF (3.20 MB)


04/06/2010 Update:

Due to the help and generousity of many kind people in the voice-over industry (I maintain websites for some voice actors), I got a JAZZY battery-powered wheelchair on New Year's Eve Day (12/31/2009). The wonderful man I got it from even threw in a lightweight transport chair. My struggle for autonomy continues, however, as I still need a better manual chair (I can't propel the transport chair, it's too flimsy and lacks adequate handrails). I also need to have ramps built before I will be able to get the JAZZY in and out of my house on my own. Even taken apart, the power base of the JAZZY weights 100 lbs and the seat weights 42.5 lbs, so it's impossible for me to carry and assemble by myself. I need to be able to keep it assembled and drive it out of the house. A few more donations and a recommendation of a reasonably-priced carpenter is definitely needed. I've looked at pre-made, metal ramps and I just don't think they would work for the front of my house. I got picked on by the city and the homeowners association over the appearance of my house last year and don't want to risk their wrath again, so I need the ramps to look just right. Thanks so much for any help you can offer!

nfsurvivor04@aol.com


11/16/2009 Update:

If anyone has any leads on how I can get a wheelchair inexpensively, I'd really appreciate it. Motorized would be ideal, but even a manual one would offer some freedom to me once again. I haven't been able to walk more than a few feet since January 2006. I held out hope that I would improve, but here it is nearly four years later and my back and hips are worse. Plus, my Lymphedema is out of control, and my heart and breathing problems have worsened as well. Anyway, if you know of a lead in the Los Angeles area, please let me know. The wheelchair needs to be heavy duty and I think I can squeeze into one with a 22" wide seat (the wider the better).

nfsurvivor04@aol.com


04/25/2009 Update:

It's been a long time since I posted something on this blog. Thought I'd let you all know I am doing much better for the most part. I AM INFECTION FREE. No MRSA flare-ups in a very long time now. I think I've won that battle. My arm, of course, still hurts all the time, but I have been managing with Tylenol and only use prescription meds on rare occasions. My Lymphedema is under control for the most part, unless I get extremely stressed out or eat the wrong things (no more salty junk food!). Best of all, I'm in love. A renewal of life.


12/08/2008 Update:

Added a new message to the Letters Page, updated the CA-MRSA Page and added "word graphics" to the Welcome Page.


11/07/2008 Update:

Updated left frame navigation and top frame.


07/10/2008 Update:

Added a new message to the Letters Page. Another example of how a lot of hospitals still have no clue what NF is and what symptoms they should be looking for. Many thanks to Kim for sharing her compelling story. I hope you continue to heal and get better every day.


07/08/2008 Update:

I was recently featured in CHAT Magazine in the UK, check it out here. While the facts are a little off (they needed to state that the organ failure was caused by the infection) and the piece seems a bit sensational at first, it drives home the seriousness of Necrotizing Fasciitis and gave me a chance to share my story with CHAT readers in the UK and hopefully elsewhere.


06/30/2008 Update:

Fellow NF survivor and patient's rights advocate, Alicia Cole is featured in the July/August issue HEALTH Magazine. This is a great article. It's wonderful that hospital mistakes and hospital-acquired infections are getting more media attention. Pick up a copy at your local newsstand!


01/02/2008 Update:

I think I figured out why MySpace deleted the NF Survivors & Friends Support Group I created. After finding this page at Kaiser's site, I uploaded my "THRIVE" graphic (seen at left) to the group's gallery. MySpace runs banner ads for Kaiser, so I guess they were not happy about it! The "stethoscopes" graphic seen above is from my pal Alicia Cole at AmendTheCap.com. Anyway, be sure to join my friends on my personal MySpace profile, where I am still offering my support and trying to keep all of us NF Survivors united!


08/24/2007 Update:

It is with a heavy heart that I must inform you that my dear friend, Karlene Langan, has died. She was 46. Karlene was an NF Survivor since November 7, 2003. She passed away Wednesday, August 22, 2007. My heartfelt condolences to her husband (Mike), her daughter (Shannon), her son (Dakota) and the rest of her family and friends. Here's the address of her MySpace page. Her daughter will be keeping it online as a tribute to her Mom. Feel free to go there and post your condolences, if you would like to: http://www.myspace.com/kklangan

KARLENE, WE SHARED SO MANY EMAILS, I FELT AS IF I KNEW YOU PERSONALLY. WE SHARED SO MUCH: OUR SURVIVAL STORIES, BEING THE SAME AGE, HAVING HAD THE SAME ILLNESS. I WILL MISS YOU MY DEAR, SWEET FRIEND. YOU HAVE YOUR WINGS NOW AND I KNOW YOU WILL USE THEM WELL, AS YOU WERE ALREADY AN ANGEL HERE ON EARTH. -DOREEN


07/21/2007 Update:

Revamped the Video Page. There's a scary amount of newsclips online! This page is just a sampling of 24.


07/10/2007 Update:

Added a Videoclips Page ... please send in links to more, if you know of any! Thanks! I also reposted all my surgery photos, so you no longer have to log-in at SnapFish to see them. I hope they won't get abused by ignorant websites again, but I know they probably will.


07/06/2007 Update:

I found different photos of my arm on my PC. They were taken on August 15, 2006. I guess I forgot to upload them last year. I'll have Nora shoot brand new pics for 2007 soon.


06/23/2007 Update:

I found some photos on my PC of a MRSA wound Nora had in 2004 on the back of her upper left thigh. Sound familiar? What is with that area? We clean all of the toilet seats in my house several times a day with Lysol, so I don't think it could be lurking there. Nora seems to have finally shaken MRSA once and for all, but I had a new infection just last month. It wasn't as severe as others I've had, but I still want this madness to stop! Nothing seems to work for me! Anyway, I'd also like to take this opportunity to remind you guys to join the new Necrotizing Fasciitis Survivors Group at MySpace. I strongly feel that the more we spread the word, the sooner something will be done in this country to stop MRSA and clean up dirty hospitals!


05/27/2007 Update:

Hi guys! I've been fighting yet another MRSA infection for the past three weeks (see the pics here, if you dare!) and was unable to get much work done, as the wound is on the back of my lower left thigh and I couldn't sit for very long! Anyway, I'm almost healed and very relieved to have gotten through this newest "pain in the butt!" I've just posted two new survivor stories: Nancy's Story and Beverley's Story. Nancy's has pics, so beware.


03/23/2007 Update:

Just wanted to say HELLO and let everyone know I'm alive! I survived all the "anniversaries" (of my illness and my Dad's death) and a bout with some sort of stomach virus and am back online. Email me! Oh, and I made a few changes to the photo pages.


02/19/2007 Update:

Added Karlene's NF Survivor Story to the site. Also added some new stuff to the Links And Articles page.


01/23/2007 Update:

Wow, I don't know where to begin. It seems like everyday I hear a new story about someone having an infection of some sort or another. Back in Nov/Dec 2006, I read about an outbreak of Pseudomonas aeruginosa bacterium which sickened seven children, including an infant who may have died from it, at a Southern California Hospital. The source of the bacteria? IMPROPERLY CLEANED HOSPITAL EQUIPMENT. I also have been receiving more and more emails from friends and relatives of NF victims. Most of them became ill AFTER A MEDICAL OR DENTAL PROCEDURE. In case you are reading this "out of order" and haven't read my full survivor story yet, I AM 100% CERTAIN I became ill because of the infections my Dad brought home from Kaiser Hospital. All one has to do is look at the FILTHY old floors in that place to know it is a hotbed of germs. Anyway, I've posted a sampling of some of the recent mail on the Letters Page. I have been going back and forth in my mind wondering if the sudden increase in email is due to more people contracting NF or more people simply finding this website. I don't have any way to know for sure. But, I do know that THE MEDICAL COMMUNITY IS STILL GROSSLY UNDERINFORMED. I can't believe how many doctors and hospitals are turning away patients with NF. Something has got to be done. You shouldn't have to wait until you are nearly dead to finally be taken seriously! Apparently, we are currently living in a WAIT AND SEE era ...

 

I'm a fan of Scrubs, which is filmed, in a decommissioned hospital in North Hollywood, about 2 miles from my home. There are 2 Season Two episodes that mention NF: "My First Step" (11/07/02) and "My Lucky Day" (12/05/02). In both episodes, Dr. Cox (John C. McGinley), who is supposed to be the best doctor in the hospital, is completely disinterested in NF or helping the patients. In "My Lucky Day," NF is only briefly mentioned: J.D. (Zach Braff), not Cox, makes the correct NF diagnosis, leading to a "Who's the better doctor?" contest. But in "My First Step," NF is featured more prominently and with a lesson: Dr. Reid (Sarah Chalke) diagnoses her patient with NF and consults with J.D. about what to do. He says "Wait and see." Elliot instead makes the decision to send her patient into surgery. The patient dies. At first J.D. has a "told you so" type of attitude, but later in the M&M (Morbidity and Mortality) meeting, the Chief of Staff, Dr. Kelso (Ken Jenkins) delivers an excellent speech about how "WAIT AND SEE" DOCTORS WILL NEVER BE GOOD DOCTORS, BECAUSE GOOD DOCTORS DON'T WAIT, THEY TAKE RISKS AND MAKE DECISIONS. J.D. finally realizes he was wrong, even though Elliot lost her patient. If you'd like to see these shows, click the little box on the left and you'll go to Amazon.com's page for the DVD. A tiny portion of the sale goes to me. I'd like to also point out that TV shows often pluck their ideas from real news stories. These episodes were originally aired in late 2002, and are still seen as reruns in syndication. One would think there would be more awareness by now!


12/31/2006 Update:

The third "anniversary" of my illness is rapidly approaching (02/22/2007) and I am still recovering and still in need of scar revisions. Anyway, I've become good friends with another NF Survivor, Nicole Martin. She has graciously given me permission to post her story (warning - *graphic images*), which can be found here. Thank you, Nicole! I hope you (and everybody reading this) will have a HEALTHY and HAPPY 2007!


11/02/2006 Update:

I heard on my TV yesterday: "Given four hours to live, teenage girl must decide, lose your breast or die!"  I immediately said to Nora, "Oh my stars, she got her nipple pierced and then got NF." Sometimes I really I hate it when I'm right ...

Teen loses breast to rare infection
http://www.indystar.com/apps/pbcs.dll/article?AID=/20061027/LOCAL/610270538/0/SPORTS

Teen loses breast to rare infection Topix Forum # 1
http://www.topix.net/forum/source/indianapolis-star/TFOI56D2G7HASC711/p2

Flesh-killing infection costs teen her breast Topix Forum # 2
http://www.topix.net/forum/source/indianapolis-star/T8JR0FM18VUFQVBL2/p2

Teen loses breast in piercing nightmare
http://www.free-press-release.com/news/200610/1162270017.html

Teen's Breast Removed After Infection Entered Hole From Piercing
http://www.newsnet5.com/health/10190301/detail.html

Teen Loses Breast to Infection
http://abcnews.go.com/Health/story?id=2615844

Teen loses breast in piercing nightmare
http://www.theage.com.au/articles/2006/10/31/1162056966380.html

The TV show with the sensational phrasing in their commercial was INSIDE EDITION. By the way, this young woman is also a diabetic, so her decision to get the piercing really floors me! Nora taped the story, if you want a copy, email me. The young woman, her mother and a photo of the seedy-looking tattoo parlor are in the story, and it does have some educational/precautionary value, even though it's somewhat devoid of NF facts. These trendy, and potentially deadly, fads have got to stop ... it is not "body art," it is mutilation. Be happy with the holes you've already got! I feel terrible for this girl, but she has nobody to blame but herself.


10/08/2006 Update:

Even though my NF did not present itself until Feb. 2004, for at least six months, Nora and I had been getting mysterious "spider bites" -- that we now know are actually staph or MRSA infections. It has become the most frustrating aspect of my life. I usually get the wounds on my lower back and on my butt ... some have been so bad I couldn't sit for two or three days. There is one wound in particular, the one on my tailbone that I had when I was hospitalized (and that the staff at Olive View IGNORED) that acts up from time to time. There's a similar one of my lower left abdomen that reinfects, gets well, and reinfects again. I've tried all sorts of remedies, but eventually a wound will return, usually the day after I tell someone, or even think to myself, "I'm feeling well and am finally infection-free." I guess this, too, is a "life sentence." I wouldn't wish this on my worst enemy (if I had one). Every new flare-up also means new anxiety: "Will this one turn into NF?" "Will I ever be well?" "Why can't they find a 'cure' for this?" I don't even leave my house during a flare-up, for fear of spreading the condition to someone else. I'm just happy my Dad never knew he was the source of my illness, and in turn, Nora's illness -- I feel guilty enough for the both of us!


09/11/2006 Update:

What Blaine said (see the Letter Page) about NF being "a life sentence" really hit home for me ....

I can't tell you how many friends and relatives have asked me "haven't you recovered yet?" Uh, NO! The removed muscle will never grow back, the scar tissue (and emotional scars) will never fade completely and I will live with chronic pain for the rest of my life.

When someone asked me "how are you?" before my bout with NF, I could say "fine" and mean it. The term was an accurate description and a commonly shared definition of the word applied. Now when someone asks how I am and I say "fine" it means "fine for me."

In other words, "fine" now means "my arm hurts, my scars burn, I'm tired and I can't believe I have to live this way "forever." But, I'm alive and happy to be here to say anything, even if I can't express how I really feel without being a downer and even though few people really understand how it feels to be in a damaged body ... a body that was healthy but has now changed, literally, overnight."


08/26/2006 Update (Part One):

The infections on my back (the original wound turned into three) are better, but my arm itches like the dickens. There's no corresponding nerve endings left to go with the itch, so it's impossible to scratch it. I have a new kitten, Sunny, who has discovered she can bite and scratch me in places and I can't feel it, so I have a lot of little injuries on my skin graft area. I have to play with her very carefully. She's such a joy, holding her while she sleeps has become my favorite stress-buster! My Lymphedema is no longer confined to my right arm and breast. It has spread to my left breast, lower abdomen, and both feet, ankles and calves. Nora has to do manual lymph drainage on me twice a day: my feet are HUGE. Not all of the swelling goes away, but it becomes more tolerable.


08/26/2006 Update (Part Two):

I'll keep this brief: I've really been trying to cope, but sometimes it's hard. I attempted to belong to a support group, but nobody was willing to address financial issues, deeming them irrelevant. I beg to differ. The stress caused by my $283,718.00 hospital bill has delayed my recovery. I can't sleep. I'm always worried. Just this month, Medi-Cal finally paid $211,562.00, but I still owe the hospital $72,156.00. The doctors did not operate promptly, allowing my condition to worsen to the point that I was in the final stages of organ failure, then left my arm half done, and now expect me to pay them for crippling me? How can anyone say this is "irrelevant?" And what do I do? Find one thousand people willing to donate $72.00 each?


After 26 months, the bill was supposed to have been paid by Medi-Cal. So, what happened? Why am I still in debt?


Is it JUST ME, or would having this HUGE BILL hanging over your head FOR OVER TWO YEARS stress you out, too?


08/07/2006 Update:

I've posted my caregiver's comments regarding my hospital stay and the things that went wrong. She's quite a colorful writer. I also have added a small sampling of the emails I have received over the past 18 months. They are on the main (home) page of the site.

At this time, Nora is healthy and doing well. I have an infection on my lower back and Nora is once again changing my bandages. This infection is mild, luckily. I had a really bad one back in April and I thought I was a goner for sure. I don't know if anyone else has had this problem, but I'm beginning to think that once you've had MRSA, you'll be more susceptible to new infections in the future. I'm going to research this and see if my theory is true. Anyway, I hope the updates will be helpful. I also hope I never hear from the jerk, that pissed me off this weekend, ever again.


06/26/2006 Update:

Didn't have it, had it, lost it again ...

My Medi-Cal has been terminated. I was supposed to sign some forms and update my financial information with the county, but missed the deadline. I would assume that the case can be reopened at a future date, if I decide to do so. I think I'm going to get Blue Cross instead, even though I will have to pay for it myself out of my limited income, and wait another six months before they'll do anything about my arm (they have a pre-existing condition policy). After how the county's treated me in the past, they don't exactly get my vote of confidence. And I don't think it's really their business how much, or how little, money I have in the bank NOW. My Medi-Cal was supposed to be based on my hospitalization's timeframe (when I was penniless).


05/06/2006 Update:

I received a big envelope from CDSS (California Department of Social Services) a week ago today. It's taken me days to believe/accept that it's true. Even after I heard a message on my machine on Wednesday from the social worker at Olive View that stated "You've won your case!" I still doubted it. Won? Huh? After two years, good news?

I learned in Psychology that even good news carries a certain amount of stress. It does. This news was "the last straw," so to speak. I broke down and wept when I finally was able to wrap my mind around it. I also feel bad about an earlier post I made to this blog ... I was really wrong about the "judge." He DID look. And listen. He took all the evidence into consideration. And he came to the correct decision. I owe that man an apology for my earlier rant! Just proves you really don't know what lurks inside someone going by external factors alone. He seemed so cold and unimpressed. Apparently not. Wow. I'm so blown away.

I hope this means I can get my arm fixed up somewhere other than Olive View, and I hope I can start seeing a doctor again soon! My IBS (Irritable Bowel Syndrome) has been worsened by my experience with NF and I have been really sick for nearly two weeks now. I didn't know where to go or what to do! Now I have OPTIONS! I can find a GOOD doctor. I can get BETTER. I think I'm going to cry again.


01/01/2006 Update:

I've spent the past couple of months in shock ... THE STATE TOTALLY SCREWED ME ... See for yourself:

DENIED? Yes, indeed, you read it here first. The state's official standing on my condition is: "USE YOUR LEFT HAND." I kid you not! The social worker that applied for me didn't even know what the heck I had and put the reason for my claim as a "connective tissue disorder." Connective Tissue Disorder??? ARGGGHHH!!!!! So, I appealed and went to a creepy hearing in Downtown Los Angeles (yikes!), where I stated my case to a "judge" who wouldn't even look at my wounds and had no clue what NF is. Almost every word fell upon deaf ears. I finally got him to keep my case open by telling him I now have crippling anxiety due to all of this. THAT he considered, but my many physical limitations he was completely unimpressed with (it might have helped if he LOOKED AT ME).

Then I had to pay $12.00 to get my car out of the parking structure (I was there less than an hour!!!). Such a wonderful experience, especially the new found knowledge that Dr. Lambert merely paid me lip service. THE THING THAT REALLY GOT TO ME WAS THE LOOK IN THE OTHER PEOPLE'S EYES IN THE WAITING ROOM -- THEY TOOK ONE LOOK AT MY ARM AND YOU COULD TELL THEY WERE THINKING TO THEMSELVES "IF THE STATE DENIED THIS *CRIPPLED* CHICK, THEN I DON'T STAND A SNOWBALL'S CHANCE IN HELL."

If only I had friends in high places!

It has now been MORE THAN A YEAR that I have been waiting for an operating room at Olive View for my much-needed corrective surgeries to be done. MY NEW YEAR'S RESOLUTION IS TO SAVE MY PENNIES AND GO TO A PRIVATE PLASTIC SURGEON. I wish someone like Ellen DeGeneres or Oprah Winfrey would find this site and say to themselves, "Helping this poor woman straighten her arm again (after being in this awkward bent position for nearly two years) would be $10,000 well spent!" UH, YEAH. I GUESS A GIRL CAN DREAM, CAN'T SHE?

ANYWAY ... Many thanks to everyone who sent me X-mas, Hanukkah and New Year's cards. It was tough going through the holiday season (for the first time without my dad) and all your words of encouragement helped a lot. I LOVE Y'ALL! And I'm really sorry about the angry tone of this post -- I'm really more hurt than angry! Frustration seems to be my only companion these days.


09/14/2005 Update:

Nora was released from the hospital on Monday. I examined her toe yesterday and am happy to report that it is already 90% improved. Her case was treated much more seriously than mine originally was. I think I may have taught Olive View a lesson. They didn't sit around and wait to see what would happen with her, like they did with me, instead they took a much more aggresive approach. Thank goodness.

Found another interesting link today:
Causes of Necrotic Wounds other than Brown Recluse Spider Bites
http://spiders.ucr.edu/necrotic.html


09/11/2005 Update:

Nora is still hospitalized at Olive View. She called this morning to tell me that they are keeping her yet another night, and have moved her roommate out, so Nora can be in isolation, because the doctors said "THERE IS SOME MRSA INVOLVED." Nora, of course, quickly footnoted that statement with "But they said there's spiders involved, too, because there had to be a break in the skin." Frankly, I think the package is far more important than the means in which it was delivered (at least at this point) and all I can say is: THANK GOD, MAYBE THIS NIGHTMARE WILL FINALLY END.

I guess because of my bout with Necrotizing Fasciitis, I was more motivated than Olive View to do research and get all the latest data. I figured out what was really going on MONTHS AND MONTHS AGO and, if only Nora would have listened to me, she could have been spared A LOT of suffering. She was right there with me, when I went through my ordeal, and was always the first to say these infections could happen to anyone, that is, until it happened to her. She just would not accept it.

I feel like the weight of a 17 ton boulder has been lifted from my shoulders. Today is the first day in THREE YEARS (since her first spider bite) that I feel relaxed, not just mentally, but physically. HERE IS WHAT THE BRAINIAC DOCTORS AT OLIVE VIEW NEED TO DO (IT'S CALLED A SEARCH ENGINE, FOR PITY'S SAKE, USE ONE ONCE IN A WHILE!) ...

If the patient says spider bite, think MRSA, says pharmacist
http://www.aafp.org/fpr/assembly2004/1015/10.html

"MRSA Infections: More Common than Spider Bites"
http://www.hivdent.org/medical/medMIMC062004.htm

It is important to differentiate spider bites from CA-MRSA
http://www.afpmb.org/bulletin/vol25/Spider-Barracks%20Information%20Sheet.pdf

TalkLeft: Prison Misdiagnosis of 'Spider Bites'
http://talkleft.com/new_archives/002720.html

It's Not a Spider Bite, It's Community-Acquired Methicillin-Resistant
http://www.medscape.com/viewarticle/482893

Methicillin-Resistant Staphylococcus Aureus Infections initially thought to be spider bites
http://www.medscape.com/viewarticle/464224

Los Angeles County, MRSA Sometimes Misdiagnosed as Spider Bites
http://www.lapublichealth.org/acd/MRSA/MRSAmyths.htm

Is that spider bite actually MRSA? Misdiagnosis of methicillin resistant
http://www.lapublichealth.org/acd/docs/TPHSeptember2003Revised.pdf

Los Angeles County became well-acquainted with MRSA over increased reports of "spider bites"
http://www.ncchc.org/pubs/CC/mrsa.html

SEE WHAT I MEAN? MRSA is running rampant in Los Angeles County, ESPECIALLY IN HOSPITALS, the military, the jail system and other County facilities! You can get it at your health club or ANYWHERE there is communal use of items. I'm not trying to scare anyone, but I do think people need to BE AWARE of the problem. My biggest fear is that this thing will get worse before it gets better! Take good care of yourselves!


09/10/2005 Update:

Nora was hospitalized last night. She's at Olive View, on the same floor I was on. She has (she thinks) a spiderbite on her left foot/toe (the one next to the small toe). It was infected, ANGRY RED and painful. I think it's MRSA. They decided to keep her and give her IV antibiotics. They don't suspect NF (OVMC doctors like to call it "Nec Fash"), but were concerned none-the-less that losing her toe is a possibility.

OVMC never came through with my corrective surgery. The promised 3-5 month wait has now turned to 9 (actually, 11 months, if you count from the first day they began the plans) and I'm afraid I'll run into someone, I don't want to see, if I go there today. I didn't find out she was going to stay overnight until 30 minutes before visiting hours were over (and it takes 20 minutes to drive there).

I'm praying that they will release her today ...


08/12/2005 Update:

The first progress in months! A social worker called me and said that she couldn't picture what was going on with my arm from my description alone and that I would have to have to be looked at by an expert, because she "would not be able to tell if I was disabled, just by looking at me" (She obviously hasn't seen me, has she?!). So, the Department of Public Social Services (DPSS) sent me to a doctor to be evaluated for my Disability/Medi-Cal case. I saw her this morning. She was a very nice woman named Dr. Lambert. She said that, especially because I am right-handed, and have so little use of my right arm, I am disabled. In fact, she called my arm "completely useless." So, that's the opinion she'll submit to "the powers that be" on my behalf, which will be weighed with all my medical reports and the opinions of my other doctors. I hope I get Medi-Cal, I really need it! Olive View never made good on their claim that they would do my first corrective procedure "in 3 to 5 months." It will be EIGHT months on the 26th! *Sigh!*


04/13/2005 Update:

I've been going over my medical records, and Nora's notes (she wrote A LOT while I was in the ICU), and am more amazed than ever that I survived! Nora informed me that, when finally diagnosed, the doctors said I had three types of NF:

1. Type I, or polymicrobial NF (Usually mistaken for simple cellulitis)
The lymph node removed from my armpit was completely full of it!
2. Type II, or group A streptococcal NF or the so-called flesh-eating bacteria
When the disease spreads along the layer of tissue that surrounds muscle (the fascia).
3. Type III NF, or clostridial myonecrosis, aka gas gangrene
This caused my muscle infection (it is called necrotizing myositis).


04/13/2005 Update (Cont'd):

Since my father passed away, I can finally reveal how I developed Necrotizing Fasciitis:

Over the past two or three years, Dad was suffering from many infections, almost constantly. The infections included (but were not limited to) C. diff (Clostridium difficile) and MRSA (Methicillin-resistant Staphylococcus aureus). Although once thought to NOT be a cause, MRSA has recently been recognized as an infection that can produce NF.

Anyway, while Dad was suffering CHF (Congestive Heart Failure) and all the many infections he picked up at Kaiser-Permanante Hospital, he also was experiencing extreme incontinence (he had beaten prostate cancer years earlier, but his prostate was still enlarged due to other conditions and was also full of infection). His infections (actually, the antibiotics used to fight them) also caused him to have uncontrollable diarrhea at times. He had problems with other secretions, too. He was a living Petrie dish and, as his untrained home health care provider, I was unprepared for many occurances during his illness and, bascially, unaware of the risks his infections posed. And for some reason, nobody at Kaiser felt it was necessary to warn us of how infectious he was. When I look back, I realize now that he probably left harmful bacteria on everything he touched ... therefore Nora and I both wound up with infections because of Kaiser's negligence. How can they release someone with a raging infection back into the community, especially someone who was either in denial of, or oblivious to, his state of health baffles me.

One day while helping Dad dress for a doctor's appointment, for some odd reason (he was 86 years old at the time and beginning to show signs of dementia) he decided to use my right arm to prop his left foot against as we put on his shoes. His sock was soaked in urine and my arm quickly was drenched in it. We were running late, so after I cleaned him up and changed his socks, I quickly washed myself up (if I had only known, I would have been late that day and taken a long, hot shower).

Anyway, I find it hard to be a coincidence that the exact area he put his foot just happened to also get NF! I HAD TO HAVE GOTTEN THE BACTERIA THAT LEAD TO MY NF THAT DAY. Judging by how my armpit had to be completely amputated, my theory is (since I had no open wounds) that in my haste to wash up, urine/water must have entered my arm through hair follicles or the pores in my skin, then spread like wildfire from there. Just days after I was hospitalized at Olive View, Dad was hospitalized at Kaiser for his infections. In addition to MRSA, he had VRE and C-Diff. The Vancomycin resistant infection was treated with Cipro (which, I believe, is one of the strongest antibiotics made ... remember the Anthrax scares after 9/11?).

I've received a lot of email from people wondering why I never mentioned how I caught NF. I answered a few of them but, until now, have I not published this information. I just couldn't risk my father finding out, he never would have forgiven himself. He thought I got the NF from the spiderbite I also had at the time and took that belief to his grave.

In a future update, I plan to outline all the other medical conditions my NF triggered, both during my hospitalization and afterwards (like the lovely wound I have on my shoulder as I type this). For now I leave you with these words of wisdom: If you are the caretaker of an elderly or ill person, YOU CAN NOT WASH YOUR HANDS OFTEN ENOUGH! What out for ALL secretions, watch out for urine, feces, blood, pus, mucus and even sweat.

I know it seems silly to have to say all this, but I watched doctors and nurses touch my dad and then touch the patient in the next bed! No wonder these infections run rampant in hospitals!


04/06/2005 Update:

I just "celebrated" the one year anniversary of my release from the hospital on April 3rd and decided to finally post some current photos of my arm. It is still bent at the same awkward angle (which is difficult to photograph), still has the scar bundle (preventing it from straightening) and is still awaiting corrective surgery (Zzzzzzzzzzzzzz).


03/19/2005 Update:

My dad passed away a little before midnight, March 18th. While I am tremendously sad, I am also relieved that his suffering has ended. I already miss him terribly.

**VISIT MY MEMORIAL TO HIM**


01/28/2005 Update:

I'd like to thank everybody for emailing/writing regarding my battle(s) with Necrotizing Fasciitis and/or Lymphedema. The support has been wonderful! Unfortunately, I am currently unable to send personal replies as I attend to my elderly father, whose condition is rapidly deteriorating as he suffers end stage CHF. As soon as time permits, I will be updating this site with new photographs (taken both before and after my upcoming corrective surgeries) and to commemorate the one year anniversary of my illness on 02/22/2005. I have filters set up to save all email I receive regarding NF/LE and will reply to each as soon as possible. If you do not hear back from me personally before March 2005, it is possible your message was lost. If so, please resend it and accept my apologies in advance!


10/21/2004 Update:

For the past few weeks, I've been having a very difficult time with Stage One Lymphedema, so I decided that a link to the National Lymphedema Network should be added to this site alongside a link to the National Necrotizing Fasciitis Foundation. Even though I was told it would happen in October, I still haven't had my scars "released" and have been pretty depressed. Still having my arm bent at this angle has grown more and more bothersome as it hinders ALL of my daily activities. I even ordered a Lymphedema Alert Bracelet tonight. It will let medical people know they can not draw blood or take my blood pressure from my affected arm, if I am unable to speak for myself.

What really, really frightens me is what if for some strange reason I were to ever get arrested? I would be in a world-of-hurt if the LAPD (who seem out of control these days) ever tried to put my bad arm behind my back, in fact, they would probably have to break it to do so!



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