Help me live and don't let my illness win
Organized by: Daisy Pippin
My name is Daisy Pippin and my stories very long and painful so I hope you take the time to read what I've written. I've been offered by a few friends to have fundraisers but never wanted or want to burden anyone of my friends for doing things like that in regards to my illness because I've been independent basically through this whole process, except for my adoptive family because I lost my entire nuclear family in a 3 year period in my early 20's. First it was my dad. We grow up thinking that our parents , or at least in my case, as being strong and invinsible. By the age of 20, my father was 56 and developed early onset Alzheimer's. I'm 41 years old and a mother of three. I am a Katrina refugee and after living in New Orleans for 33 years of my life i had to move to Dallas or outside of Dallas after Katrina and a year later became ill and I still worked and I went to the clinic at a very big hospital in Dallas that starts with a B but I will not name that hospital. And for two years I went through multiple test from bone marrow biopsy's , lumbar punctures, so many scans,ultrasounds and tests I lost count, so many labs I lost count. I have was accused of being a drug seeking hypochondriac to. Then one night the day before my daughter's sweet 16 birthday party December 15 of 2009 I was rushed to the hospital to the Big B and they were finally able to diagnose what I had( because both ducts had shut and my pancreas was about to burst, and would have had i not gotten there even an hour later and i would have died..and also went into acute kidney failure and was put on dialysis) and it's called a Pancreas Divism. Though 10% of the population is born with it and it's a congenital illness .01% develop severe chronic pancreatitis and unfortunately what happens is the pancreas attacks not only itself but your internal organs and surrounding tissue. But it can only be diagnosed with an ERCP, it does not show up on any scans or ultrasounds. They finally did an emergency ERCP and both ducts had shut and my pancreas was about to rupture and I was dying and they told me I was dying, to make plans for my children. See where in a normal person, you have one main pancreatic duct. but in my condition I have two narrow ducts. I refused to die and so I contacted every major hospital in this country and finally found a hospital that was doing new studies not yet approved but in trial phrases and since i was dying anyways. i entered it and that was UAB in Birmingham and they did my case pro bono if I entered a study because it had not been approved yet and they told me would buy me time but they didn't tell me the consequences because when they went in my pancreas it done so much damage once they cut me open date realize the extent of the damage. They had to remove3/4 of my stomach, my bile duct, my gallbladder, duodenum, and a head and into the tale of my pancreas and then a transplant team took that head of my pancreas and they harvested the islet cells out of it and they infused those islet cells that make insulin into my liver through the portal vein and now my liver makes insulin for me but now unfortunately I'm becoming a diabetic. Now they do it's called TP or total pancreectomy's with AIT transplants but that was not available for me at that time or I would've had it done. Now I contacted the University of Minnesota and they're willing to take my case and the Doctor Who pioneered the AIT transplant is willing to help me out by removing my remaining pancreas and spleen and placing an insulin pump in because now my pancreas is destroying my spleen and there's vascular damage that I was hospitalized just last week with petechial hemorrhage Under my skin and my platelets were bursting under my skin and it resembled what's called a scarlet fever rash is what it looks like but it was all over my body, with kidney and liver function problems on top of it. I fear if I do not have this surgery that I will die my quality-of-life is very poor and believe it or not people with my Onis according to my doctors at UAB the suicide rate is 60% because people just can't take the pain day in and day out. But I will not give up my children were separated my daughter was 16 now went in the day before her sweet 16 and was planning a surprise party for her and still managed to work and take care of two of my children by myself and I'm 5 foot nine and I weigh 107 pounds I was diagnosed also three years with osteopenia which is a nice word for you haven't broken a bone yet so it's not osteoporosis.. I suffer from now malnutrition and let's call dumping syndrome since they had to remove my upper bowel because my pancreas had destroyed it. And even though I worked since I was 15 years old and even afterwards went to college, worked hard all my life I live on disability 1095 a month, That I can barely make rent and utilities and probably soon looking at eviction and have enough bills to stack from the floor to ceiling in a 20ft room and would work if I could because between doctors visits co-pays all the medications, hospital stays ,medical bills piling up it's destroyed my life.. But what do I do not get my medication and see the doctor you end up falling behind on your bills and I know in this economy there are many people struggling financially and I understand that but I want to do is live some type of good quality of life and when I wasn't sick I donated charities all the time and did fundraisers so I'm just hoping and praying to God that maybe finally all the good I've done in my life that maybe it'll get paid forward to me, Because I'm sitting here crying embarrassed even having to ask for help, that's why I would let any of my friends even do a fundraiser for me.. But I felt it's time that I swallow my pride because I want to live and I've missed so much I miss my children growing up, its's ruined my life, and my children didn't have their mother and my children were seperated. This surgery may not only save my life but allow me to be a mother to my chidren by goin to be able to visit them, it will not get rid of all the pain the nurse coordinator told me but it will save my life and give me a better quality of life then I have right now, whether being in bed or in the hospital or having to take strong meds to just go to the mall, take a car ride to the beach, etc, Until I end up in the hospital which is like almost being in a prison especially when you're in there for months and you go weeks without eating because that's the only way to calm your pancreas is to be NPO see you get everything intravenously and because of that I know have a port in my chest because the medications have destroyed my veins. So anything you can donate to help me get to Minnesota and to cover the expenses and maybe not get even evicted because I don't know where to go if that happens it would all be greatly appreciated, Because a lot of people don't understand that Medicare only covers 80% of your care the other 20% you're responsible for and even supplements are a joke they pretend that they cover the other 20% but they don't. Well that's my story if you have any questions you can email me at Daisy.Pippin@yahoo.com and any help you can give me would be greatly appreciated thank you so much and God bless, and PS I had to have Siri type this for me because I had a seizure two months ago and it's hard for me to type. I WANTED TO ADD SOME THINGS AND WILL AS I HAVE THE ABILITY TO DO SO
Thank you so very much for the donations thus far guys .God bless you.They are willing to take my case and after they remove my remaining pancreas and damaged spleen they will be put in an insulin pump and i will be labeled a Type 1 diabetic. After a year, Dr. Buell, one of the transplant docs from Tulane said I can be put on a donor list for a new pancreas and kidney combo. But the biggest thing right now is to post it to all your friends and then ask them to post it to their friends, and so on and so forth and so on and so forth..as Dina Zeevi wrote"if 35,000 people donated a $1 , or 3500 could give $10, or 350 people could give $100..The goal will be met. so just spreading the word helps. Having failing organs as you know is painful and messes not only your body but your mind..All the meds they have me on now are over 50+ pills a day i have to take a day. But i just want to live, I'm not ready to die. If God could give me just 9 more years, when my son turns 18 and i know my kids are okay, which they are now because i can watch from afar ya know, then he can take me when he's ready. Of course I want to live longer, I don't want to die but it's part of life.. but I have to take multiple pills to do things that others take for granted,I have to take narcotics before I can get out of bed,to clean my house. My ex boyfriend, Thanks btw David for truly being so good to me, payed for me to go sky diving which was #1 on my bucket list for my b day in March(he dumped m e a week later, guess he couldn't handle the mood swings that come with the side effects from one of the many pills I have to take, but he, along with my children, friends, etc. deserves so much better than what I can give them. I have spent my entire 30's sick!!! That is suppose to be some of the best times in a woman's life. Now I will not lie, If I have had or have good days, I take full advantage as my docs have told me to, but I can assure you, and my CP (chronic pancreatitis) peeps can back me up. along with other peeps close to me, that one good day, follows with a week+ in bed..but it's worth it...Well I just thought I would give you guys a little insight and FYI, i'm going to add this to my info on crowdrise.com, and also I spared the gory details of living with this..not a day passing without vomiting, dumping syndrome, horrible pain every time I eat, etc. I could go on and on..Guess I couldn't avoid it ..But again thanks for all the love and support everyone, and just spread the word..PS I am a huge animal lover but you know what blew my mind, on crowdrise a person needs money for her dog to have an operation and asking for $2000 and has already reached over $1200 I believe when there are parents asking for help because of a very sick child or people like me with potentially dangerous/deadly illnesses clipping angel wings(I use that expression seeing i've almost died a few times because of a bad immune system and kidney infection can become septic quick, or when my last port got infected and I developed Endocarditis(an infection of the heart)..Okay for everyone who knows me, even if you haven't seen me in awhile, I'm still that vivacious girl from high school and don't want to talk dark or negative...Just pass it on and I will do my best to stay positive and all money will go towards the surgery copay, medical bills, copays, getting to Minnesota, paying back loans I needed for meds and past copays( I worked since I was 14 and up to 33, and worked those last year very sick) SS disability and Medicare, a joke..If I could work, I would, but now that my liver is being effected, and platelets bursting under my skin(because my last MRI about a year and a half ago showed vascular damage to my spleen but it's been enlarged for years, comes with the illness and they said it would be okay, but I am thinking they are wrong, but they also said there was nothing more UAB could do for me but this girl, when it comes to my health, doesn't take NO or SORRY YOUR DYING, MAKE PLANS FOR YOUR CHILDREN(WAS TOLD THAT ON CHRISTMAS EVE IN DEC OF 09 AND I AM STILL HERE) ( OH DID I MENTION THAT THE DOCTOR SAID IT IN FRONT OF MY CHILDREN! CHLOE WAS 16 AND HE WAS LUCKY THAT I HAD ABOUT 10 TUBES COMING OUT OF ME AND ON A DIALYSIS MACHINE, NG TUBE, ETC. OR I WOULD HAVE PROBABLY ATTACKED HIM, ESPECIALLY WHEN SHE RAN OUT THE ROOM IN HYSTERICS AND i COULDN'T COMFORT HER AND I GUESS HE THOUGHT HE WAS JUST IMMUNE FROM THE HIPA LAW, THANK GOD MY SON WAS 2 BUT HIS GOD PARENTS WERE IN THE ROOM ALSO. WELL SORRY FOR THE RAMBLING BUT i WANTED YOU GUYS TO JUST HEAR A BRIEF, YES THIS IS BRIEF, OF WHAT IT'S BEEN LIKE..A LOVE FOR LIFE BUT A BODY THAT DOESN'T LET YOU..BUT I EVEN KNOW AND TELL MYSELF ON MY "POOR ME DAYS" THAT I ALLOW MYSELF ON OCCASION THAT THERE IS SOMEBODY THAT ALWAYS HAS IT WORSE THAN YOU RIGHT NOW DAISY! PULL YOURSELF UP BY YOUR BOOTSTRAPS AND BE HAPPY YOU WOKE UP TODAY! WELL SORRY FOR NOVEL BUT I WANTED TO THANK YOU ALL AGAIN, NOT JUST FOR DONATIONS BUT THE LOVE AND MORAL SUPPORT WHICH MEANS MORE TO ME THAN ANY AMOUNT OF MONEY IN THE WORLD! BECAUSE WITHOUT THAT AND AMAZING FRIENDS, THAT'S WHAT KEEPS ME GOING! LOVE YOU ALL MY PEEPS.
P.S.I just want to live long enough to see my youngest graduate high school, just 9 more years, and by then I may dance at my daughters wedding, or have the miracle of seeing one of my grandchildren being born and be able to hold one of my grand children. I just want to know my children are safe God, before you call on me..I just didn't think my illness was going to progress this fast..They told me the Whipple the AIT would make my life better, yeah right..NO worse, but this GERMAN ARIES won't go down without a fight!!!!