1967: Born May 23 (lifelong resident of Long Island, New York) with Prune Belly Syndrome, with a complete lack of abdominal wall. Other complications & necessary surgeries ensued during early childhood, mostly relating to lung, kidney & other urological issues. Diagnosis was very grim at birth & throughout early childhood & according to some medical professionals, I was not expected to survive. I suffered from pneumonia four times within the first four years of life, with one time being nearly fatal.
Late 60s into the 70s: I honestly don't remember a lot of my hospital stays (some I do, the earliest being in an oxygen tent at age 6) but I do know that there were several of them & I was told that my first Christmas was spent in NY Hospital in NYC, now NYU Hospital. Luckily I kept beating the odds every time.
What I remember more than anything else was the social side, growing up having PBS. I always had to be protected, wearing a very uncomfortable velcro binder around my waist to keep my stomach protected, especially in school where most kids couldn't understand what was happening. Most kids were sympathetic, while some weren't & resorted to bullying.
I wasn't allowed to participate in anything physical due to my limitations, so during Phys Ed classes, I would sit against the wall watching my friends participate in activities. I was jealous of them being able to do that.....THEY were jealous of me for getting special attention. Looking back on it as an adult, I see that it is not a big issue, but at that point in my life, wanting just to be "one of the gang", it was devastating!
1976: I started to develop some musical skills through elementary school (where I took violin & choir lessons; wind instruments were not an option due to breathing issues caused by PBS) & a local church folk group (starting out as singer, then graduating to tambourine player & eventually to guitar & piano).
1979: During 7th grade, I was walking with a friend of mine through a crowded hallway in between classes at my junior high school. I was always very cautious walking through crowds & it was probably visibly obvious to anyone noticing, but it was necessary. I was talking to my friend, looking to my right at him, when I feel a very hard blow to my stomach. Someone (never found out who) just randomly punched me. I went down, unable to breathe at all, was rushed to the school nurse & sent home. I went to my pediatrician for X-rays & saw that my left mid-section was bruised. My doctor told me that if the punch would have been directly centered, I'd be dead. Around the same time, I also had severe scoliosis (caused by PBS) & had to wear a brace from my neck to my hips almost throughout all of 8th grade. The brace was a very uncomfortable apparatus to wear & made sitting in typical little wooden desks impossible, due to a large metallic beam in the front holding all the pieces together.
1981: I started playing music in school talent shows & the like & gradually found a niche where I'd feel "accepted" among my peers.
1982: My doctors find a surgeon at Nassau Hospital in Mineola NY (now called Winthrop Hospital) named Dr. Ralph Ger, who specialized in (among other things) breakthrough surgical methods such as muscle transplants for ulcer patients & accident victims. He was somewhat familiar with PBS. We meet, he takes several pictures of my stomach area & after several visits, he is convinced that he can perform abdominal transplant surgery on me, so he had me do a lot of bicycle riding & walking to build up 1 of 4 thigh muscles (quadriceps) from each leg that I wouldn't miss, & he would graft those muscles into the stomach area to act as a 95% replacement for the missing abdominals. His surgical assistant was a gentleman named Elliot Duboys.
The surgery (performed on 8/18/82) was a success & he took several more pictures just after the surgery. Ever since, I have really not felt any of the effects of PBS that I did prior to the surgery & I try to live a very happy life as a musician with lots of amazing, loving, & supportive people around me & I hope I do the same for them.
1998: Dr. Ger & I met up again. At that point he was Chief Surgeon at Nassau University Medical Center in East Meadow NY. He asked me to meet him at the hospital to do a series of follow-up tests (at no cost to me!). He had me do X-rays, sit-ups, leg-lifts, new pictures, the works & he was beside himself at how well I was doing & had to actually remind me that I was incapable of doing all of the things he had me do for these tests prior to the surgery...I had forgotten! He even X-ray'd my back to see how the scoliosis was & I brought in an X-ray from 1982 (after wearing the brace for the year) to compare the two. They were IDENTICAL!!!
Dr. Ger then took all the information & pictures he had gathered on me since 1982 & wrote an article in 1998 about the surgery for a medical journal called Clinical Anatomy, which can be found on this page, as well as a 2009 follow-up article by Dr. Duboys.
For over 23 years, we were under the impression that my surgery was the only CORRECTIVE muscular transplant done for PBS purposes.
November 2006: The PBSN became aware of a family in Dallas, Texas, whose 7 year old son had identical surgery to mine sometime in 2000, but at 18 months old, where I was 15 years old!
The surgeon is Dr. Jeffrey Fearon: http://www. thecraniofacialcenter.org/ meet_dr_fearon.html
My doctors were uncertain if the surgery could be performed at an age much younger than my own due to questions concerning growth of transplanted muscle, although Dr. Ger had found that it worked on young dogs!!! Dr. Fearon was aware of Dr. Ger's article on my surgery & expanded on the idea, feeling that it should work no matter what the age of the patient. He was successful & has performed well over 20 surgeries since then, mostly on young PBS patients, all with a 100% success rate!!!
The surgery has literally changed my life & I highly recommend anyone capable of having it done to look into it. My uncertain days of daily up & down life with Prune Belly Syndrome are thankfully behind me. Through this surgery, my PBS was 95% “cured” when I was 15.
Anytime I can, I try to find opportunities to raise awareness for PBS. I have the amazing/lucky/blessed opportunity/ability to “look back” at what my life used to be & for the longest time, I took advantage of it & practically forgot about it……until I found the PBSN & its members within it.
When I first visited http://www.prunebelly.org in 1997, I contacted Brian Beirne (the PBS website's originator who has since passed on). I gave him all this information & he was beside himself upon hearing it. I even asked him why PBS is not commonly known throughout the general public as something like Parkinson's Disease. He said because PBS doesn't have a Michael J. Fox-type of celebrity to come out & say "I have this." Only then will media & the like be willing to learn about it.
This website reminded me of my “previous life” & showed me that people still deal with PBS just as much as, & in most cases more so than, I did back then. I hope that my personal PBS outcome can help become other people's outcomes as well & am here to help make that happen however I can. I want every PBS child & adult to have AT LEAST the same opportunities/experiences that I've had! The surgeons who spoke about abdominal reconstruction/transplantation at the PBSN's 2005 Boston medical convention were MY doctors.
Dr. Ger eventually retired & toured the world giving lectures on his work. He passed away in April 2012 at age 91.
Dr. Duboys is still in practice on Long Island, New York, with info found here:
http://www.associatedplasticsurgeons.com
Both were extremely generous & willing to help, as am I with the limited background/knowledge I have!
As of 2017, www.prunebelly.org has learned that only 1500 people are currently living with Prune Belly Syndrome in the United States.
The worldwide number is probably not that much higher & a very small percentage are female!
The numbers are much lower than originally thought & are extremely alarming!
I was elected Vice President of the PBSN from 2004-2008 & it was with great honor that I held this title. I hope I lived up to its significance. The strongest role I played as a PBSN Board Member was to do all I could to help raise awareness (medical/media/etc) for this condition & website, mostly through what I know musically, as well as work with the fellow board members on what THEY do best & combine our strengths together to achieve every goal. The current board members have taken us far beyond this to amazing places & circumstances!
I've written & recorded 2 songs about it, hold musical fundraisers for it, & try like crazy to gain interest throughout the general AND medical communities by doing so. My hope is that I can take & use my musical background to capture people's attention, then hope they'll only become more interested once they look into it & learn about it in depth.
With help from many generous & amazing friends, we have been able to manage to raise well over $100,000 since 2002 & I am always eager to seek other ways to fundraise. I ask the ENTIRE community to PLEASE spread the word about them & SEND copies to radio & TV stations all over the world & request airplay.
I have personally written to the likes of Oprah Winfrey, Montel Williams, etc, & so far I only get form letters back. But with ENOUGH of us writing them & others, SOMEONE has to finally listen & respond!
In 2002, I wrote to the Muscular Distrophy Association, which Jerry Lewis famously hosted his annual telethons for, & asked them to consider including PBS as one of the over 40 muscular conditions they cover & research. After some brief research, they politely declined, saying it is not the same KIND of muscular conditions they work with. But I can't help wonder that if we had enough public notoriety behind us, would they reconsider at some point? They usually break their own fundraising records EACH year & are usually in the SIXTY MILLION dollar range! ANY portion of that would greatly help us!
October 2017: I found that a callous had opened up on my left big toe & went to my podiatrist, who found traces of MRSA & treated it with antibiotics (pill) & thought It was healing. Instead, it actually got worse. Being Type 2 Diabetic since 2012, this is not good.
12/18/17: Had a fever for the first time in a long while & went to Podiatrist.
He told me to go straight to Winthrop Hospital in Mineola & called my primary Doctor.
12/18-12/30/17: Was in Winthrop with 3 different issues at once. (UGH the stories I could tell you about the roommate I had, LOL!) They found MRSA in my bloodstream (which was a very dangerous infection), I had a urinary tract infection for the 1st time in years & the left big toe was infected & about 2/3 of it needed to be amputated. Through IV antibiotics, the MRSA was eventually eliminated. I had to be catheterized for 10 days to treat the UTI & try to empty my oversized bladder (due to my Prune Belly Syndrome). The catheter emptied me within 2 days but they needed to keep it in to monitor my kidneys, which are 80% functional (left) & 20% (right). That led to severe spasms that my fiancée Tammy compared to labor pains. Several types of tests were done (ekg, sonograms, MRIs, etc....) & one of them was THOUGHT to show a "vegetation" on a heart valve, so on 12/26 they had to put a scope down my throat to get a better look at the heart which luckily came back negative & nothing further had to be done. If it came back positive, they would have had to open my chest & remove whatever they found. On 12/27 they removed the toe. Finally got rid of the catheter on 12/28 & came home 12/30. Home care would need to be set up to do further antibiotics & self catheterization.
Had a rough night's sleep that night.
12/31/17: Home care came in that morning to do an IV "Push" Injection of antibiotics. It's a 5-minute cold injection which is the equivalent of a one hour IV drip. After home care left, I started shivering, first I thought I was just cold but then it became the entire body shaking uncontrollably. We called my primary Doctor & because we were staying at Tammy's in West Babylon the Doctor told us to go to the nearest hospital, which was Good Samaritan in West Islip, where I was ambulanced to. Spent New Year's Eve in the ER Triage that night. Some of that night was spent next to an elderly woman with severe pneumonia & after several hours of fighting to be moved away from her, Tammy got me moved to another part of the room around 2am. Got into a room late in the day on 1/1/18 & they were thinking the tremors were because I became septic. After more tests (including brain scan to make sure I didn’t have a seizure & that the tremors didn't damage the brain, which luckily came back negative) it turns out that the home care injection was too much too soon.
2018: Came home January 3 & insisted that the home care now be an IV drip with the option to control the speed. Tammy did that for me every day over 90 minutes or so for the next 4 weeks. She also dressed the foot daily & the podiatrist was happy with how that healed.
I'm seeing a Urologist now for the bladder issues & I now self catheterize a few times daily to ensure that I stay as empty as possible at all times. This will probably be a lifetime thing.
With all this going on & all the home care that was required, I'm not able to work. I was home bound for about 3 months & Tammy was & is absolutely amazing with taking care of me. I was only able to go out to go to Doctor appointments. All music work was put on hold during that time.
Monday 4/23 at 8am, after having more issues, checking into North Shore University Hospital of Plainview
(used to be Central General Hospital, where I was born!) for a Keller Bunionectomy on the right big toe.
That toe was arthritic & no longer flexible so it caused pressure on the toe, which causes blisters.
This procedure prevented that from continuing & saved the toe from amputation!
The surgery was Tuesday 4/24 & I left the hospital on 4/27. Recovery time wasn’t TOO long!
"A Keller bunionectomy typically involves surgical removal of the cartilage surface and a portion of the base of the bone in the big toe, called the proximal phalanx, which comes into contact with the first large bone in the foot, called the first metatarsal."
Since the Spring of 2017, I am now on Disability, & have a Handicap Parking permit in my car. I’m able to play music again but at a much lesser & slower pace as I sometimes still get winded if I overdo it. I was using a cane to get around for a while but have been able to do without it lately.
Trying my best to stay healthier & hoping for good holiday season (being I missed the 2017 holidays completely), & better new year. As always, family & friends (especially Tammy) got me this far with all their love & support (including all the texts, calls, & visits) & I can never thank everyone enough.
2020: From Tammy Pendergast on Facebook, January 5th:
“Upon a follow up visit with Frank’s doctor on Saturday for his pneumonia his oxygen level was at 92 and the doctor felt the best place for him to be was the hospital. The doctor told me to drive him over to Winthrop, but once we got to the car Frank was having trouble breathing. I took Frank back into the doctor's office and let them know he was having dificulty breathing. His oxygen level had dropped to 77. An ambulance was called and brought him to the nearest hospital (Plainview). He has been admitted and receiving IV antibiotics, breathing treatments, and is on oxygen. If you have tried calling, video calling, messaging, or texting him please know he has seen this but he is really not feeling up to talking. I am sure once he is feeling up to it he will reach out to you. If you plan on visting him please wear a mask for your safety and his.”
My recollection of it:
I visited my primary doctor for symptoms of Pneumonia, which had been developing since mid-December 2019. Doctor confirmed severe pneumonia everywhere, which I hadn't had since I was a baby, & recommended going to Winthrop Hospital immediately. Went downstairs to the car with Tammy & felt a sudden drop & had trouble breathing. Back upstairs & doctor found my oxygen dropped to 77% which may have been caused by a nebulizer treatment during the visit. Fire Department came & gave me oxygen & ambulanced me to Plainview Hospital (closer to doctor's office).
While dealing with the Pneumonia prior to seeing the doctor, I broke 3 ribs on the right side due to coughing. Upon getting to the ER at Plainview, they kept me on oxygen & tried to lay me down, but couldn't lay flat because of the broken ribs so they eventually got me a recliner to sit in. Got into a room the next day & spent 5 days there, trying to stabilize the oxygen through medication. Ribs still hurt to this day, although not as much.
This was all before COVID-19, at least in public knowledge. Tests with doctors during & after the hospital stay have shown no evidence OF COVID, but with everything I had, all the symptoms line up to having HAD it. And if I did have it, I would feel better about being out publicly since then, but obviously can't.
The crazy part was I got a notice from my insurance a few months ago billing me around $4000 for doctor's service during the hospital stay, saying it was a voluntary stay. I had both the insurance company & that doctor's office on the same phone call, literally yelling at each other & the insurance hanging up on us. The insurance eventually sent me a notice that it was finally taken care of.
Luckily I'm home now, & have been hunkered down since under Tammy's amazing care. My doctors tell me if I DO get COVID, I'm in serious trouble.
2021: I am still home on lockdown per Doctor’s orders. I’ve been fully vaccinated since mid-April, but the doctor feels that with all my medical issues & the constant changing variants of COVID around, I’m still at risk & it’s better to just lay low, so all public outings are on hold, including musical performances & anything socially. My only times going out are to do drive-up shopping errands where I stay in the car.
I’m HOPING to be able to resume public musical performances sometime in 2022! Meanwhile, I do play music occasionally on Facebook Live from home! I hope everyone is staying safe & healthy during this time. I miss seeing friends & family in person!
My home E-mail address is FrankWalkerMusicLINY@gmail.com.
Please feel free to write to me & I'll do my best to reply ASAP.
Frank Walker has several recordings available:
-EVERY US by SpoonWalk (with Ramona Spooney)
-NOT THE ONLY ONE by SpoonWalk with Jen Chapin (charity single for the PBSN)
-FRANK WALKER (Self-Titled Solo Debut)
All recordings are also downloadable through Amazon, iTunes & other musical outlets.
http://www.frankwalkermusicliny.com/
http://www.prunebelly.org
PRUNE BELLY SYNDROME LINKS:
http://www.prunebelly.org
http://prunebelly.org/donate/research-donations/
https://www.facebook.com/PruneBelly/?fref=ts
Prune Belly Syndrome on You Tube:
https://www.youtube.com/results…
https://www.youtube.com/watch?v=11BZmh7htMM
Prune Belly Syndrome on Amazon.com:
http://smile.amazon.com/ref=smi_ge_rl_rd_gw…
(Choose Prune Belly Syndrome)
Ways to WEAR/DISPLAY your support:
http://www.cafepress.com/pbsn
http://www.cafepress.com/frankw
Musical fundraisers in Chicago!
http://www.bandsforbellieschicago.com
Musical fundraiser in New York, 2016!
https://www.facebook.com/events/1490240501275760/
Please support the PBSN any way you can & please share this info everywhere!
