Debbie And Her Liver Transplant |
CliThis is Debbie's face done in a paintshop pro mode called colored foil as she lay in hospice thinking. |
And this is me tending to Debbie in hospice done in "soft plastic" in PSP. The hospice looks like a bad acid trip . |
This is the pic of Deb in hospice at page top "kaleidescoped" h. Note the monster faces that developed |
This is the photo above with cartoon, magic marker, straw, and "nostalgia" picture tube |
CThis is the whole family on Christmas Day 2004; Debbie ( in wheelchair) was fine (sorta).Left to right, Mike, Debbie, my 16-year-old Mary, Mom, my 10-year-old Marina, me, Dad. Debbie went to the Mall by wheelchair to shop days before. |
Click hereDebbie's alive! (March 22, 2005). She's still alive! She was put in hospice February 5 by her primary care doctor who had kept telling her for the last 6 months that she was fooling herself and not facing reality to not accept that she was dying. (meanwhile Shands Hospital had voted and put her on their liver transplant list while this hideous doctor is herself refusing to face reality.) It was like the Medicare HMO had told her PCP to not let her get that transplant no matter what and the lady was so sure she'd succeed that she was telling Debbie the transplant idea was a joke. But Debbie had spent 8 months taking all the tests needed to qualify for a transplant, devoting every single day to this. The PCP should be jailed. So should the hospice. When they got her she was so out of it my dad thought she was in a coma and that is why he'd called 911. Whether she was or not we will never know because what happened when they got her to ER was, the PCP , without my dad's permission or even knowledge, sent her to hospice, saying she was essentially gone forever. It was a funky little building an hours' drive from her parents and an hour's drive from her sister, boyfriend of 34 years, and nieces-- everyone she knows. And all 5 of us adults on Disability, we could not make more than one trip a month to that dinky town where she knew nobody. And of course the word was, she was dying, not going to live a month.t The hospice doped her up heavily on Haldol, a tranquilizor for psychotics that sedates them into compliance, makes them dumb and confused and dopey, and seem like a mindless mental patient; and oxycontin, 40 mgs, when she'd never been on 20 mgs first. (I've been on 20 mgs for 3 years and could not take 40 all at once yet. To give her that much, when her life-long history of narcotics was 2 months of 50 mg of Demoral, nothing like oxycontin, different family of drug,they were knocking her out..) Now here's me: "My twin's in a coma? Maybe she'll come out of it once they give her food and her lactolase, like her boyfriend did." (Two years ago when he had surgury to remove the fibula from a leg, her beau came out like Terri Schiavo, oblivious to everything, although at Deb's voice he broke into a sunbeam like a baby hearing it's mother's voice. But he just mouthed nonsense syllables that never came out loud enuf to hear and lay there, for weeks, recognizing no one, expressionless. Debbie and I kept asking the hospital what happened to him and they kept saying nothing,and would not tell us anything else because he has no living relatives and patient info is private stuff even if he's been without relatives 34 years and with a girl 34 years. They thought they could do what they wanted to him, no one would know or care. Finally I called his doctor stating that I was his sister-in-law and they asked me why I thought he'd had a stroke under anesthesia and I said because he read one novel a day and knows by heart everything about the history of every country but he can't talk and just lays there! Then they said he'd had no stroke or anything, he was just normal. I said he is so far from the man who entered your hospital---. the doctor started to get scared. I said "you don't have him on Haldol do you, because he can't take that. He's always told us he has a severe reaction to it." The next day he was shaving himself when we walked in. They HAD had him on haldol and stopped it and he came back within 12 hours. Now he's been fully himself for almost 2 years. ) So they had Debbie on Haldol. Now what do you do when a family member seems comatose ? Hope they rebound. Watch for them to as everyone you know prays. But if she's drugged real bad how does she come out of it enuf to tell you she's back? Well that's what happened. We got to her right as a haldol dose was wearing off and she knew us. knew everything. That is, except where she was, how long, etc. It took me hours to convince her she wasn't in her local hospital she'd often awakened in the last 8 months. Finally she believed me when I said "where's your hospital bracelet then?" She said "You're right. Oh no, this is not good, this is not good at all. This is very bad. I told everyone hospice was never an option. Once you go in hospice you have to promise not to fight for your life, for treatment to save you, and I want my liver transplant. I'm only one test away from getting on the list and I worked so hard for this!" I told her not to worry, we'd get her out of there. I don't know if the manager had microphoned her room or what but this brought in the nurse with a hefty dose of haldol for her. She says "would you like some pain medication? Yes you're in a lot of pain, here, take these." Debbie smiled at her, took them, said thank you . The nurse said "I like the haldol the best. It's the best one." Debbie said "Haldol? I can't take haldol!" The nurse said smugly "Your chart says you aren't allergic to anything , so you have no say." I said "She's just coming out of a 3-day coma! Let her wake up!" But the nurse was already turning out her overhead light Debbie had just had me turn on so she could read the TV guide better. This is the light over a hospital bed that you pull a cord to turn on. They'd moved her bed 3 feet from the wall so she could not reach the cord. The nurse says "I hate these kind of lights, don't you?" to me while extinguishing it. Debbie said "Excuse me, I need that light on to read." The nurse said "What do you have to read so bad?" (She'd been there 3 days without reading glasses, a comb to get the matting out of her hair, a pencil, anything. I had brought her all this plus the TV Guide as she had been able to do nothing but watch tv for 8 months and it sort of was her life now.) Debbie said "The TV guide." The nurse gave me a look like, see how looney she is , and said "The last thing you need to do is read a TV guide; you need to get some rest. Go to sleep now," and walked out. I was dumbfounded. She'd just slept for 3 days and after only a few hours concious she needs to go back to being alone and unconcious again? No way, we all needed her. I thought usually when someone came to there was rejoicing like in the Bible. Can you imagine them knocking Lazarus out as soon as he got up? So from then on I fought to get her out of hospice. The primary had already terminated her Medicare, her HMO, everything so it took 3 days to iron it all out. Without Medicare she couldn't get that last test to get on the transplant list and could not get a transplant .The nurse-manager (it turned out) tried one last effort to keep her . This lady had told my dad when he first got there the first day that Debbie wasn't Debbie really, that the real Debbie was gone and this was a shell. So now the hospice lady sat there trying that one on him one last time. She said it wasn't up to Debbie if she got out or not, and she , the manager-nurse, thought Debbie was still out of it and unable to make rational choices, and then she tried to prove it by asking Debbie the day of the week, the month, and where she lived. Expressly, she said "Do you live in Nebraska, Debbie?" Well now, no one who's been in a coma 3 days really knows the day , month, etc right? How can they until they are told? They are extremely mixed up. luckily I had kept telling her it was February and dad had told her an hour before that it was Wednesday so she was able to answer all the questions correctly and the lady had no choice but to let her go. I wondered why she was trying so hard to keep her til Debbie told me the place got $800 a day, or week, I forget which, for her. And they only have 8 beds. They must've needed the clientele. The people never told my dad they had her on haldol or what it is and in fact told him they were giving him prescriptions for all the drugs she'd been on while with them and then just gave her oxycontin. When my dad said he knew she was on two medications they gave him another scrip for oxycontin,this one 20 mg. It didn't make sense--two prescriptions for oxycontin, one for 40 mg and one for 20 mg? So you can see the lengths they were going to to hide that they had her on haldol. Scenario: Debbie comes to minutes or hours after arriving at the hospice, disappointing the owner who hoped to get bucks out of her being there, so she drugs her to a deep sleep and stupor to hide it from the family. The place scared me. Debbie ate the fast food we brought her in great gulps she was so starving--they'd been putting her plate on a ledge and whenever she came to a little telling her it was her meal, she'd slept through it, and they had no way to reheat it. Of course she didn't eat it. Dig it, she'd been going to the hospital every week to get a parentesis--a draining of the fluid building up in her body making her look 12 months pregnant with quints. Then she had to drink the lactolase to lower the ammonia in her brain so she wouldn't go crazy--which gave her diarhhea. Then she caught 2 bowel infections from the hospital while getting drained there, giving her violent diarhhea and pushing back appointments for tests the transplant facility demanded. In the first place the transplant hospital usually gives all the tests but her HMO refused to pay for that, saying they could get each test (heart stress test, mammogram, pap smear, etc) cheaper at her local hospital. (When she was chosing amongst HMOs this one said she could have a liver transplant at Shands and that's precisely why she picked them. It turned out she was their first attempt at providing transplants and they did not know anything about it.) The cheaper cardiology tests turned out not to be what Shands required and so didn't count. With all this screwiness to save money, ( see above sentence-they were wasting money, really) she spent 8 months getting the tests done instead of a month like most folks. Each specialist demanded a consultation first, which he'd schedule for 3 weeks away. Only then would he schedule the test--3 more weeks away. No one in her local hospital was a liver specialist--the closest was an internist who was not familiar at all with transplants. And her primary, setting up these appointments, told none of these doctors she needed a liver transplant STAT. But as she had not personally agreed in writing not to pursue a cure, the hospice program couldn't really keep her. Debbie went home for 2 weeks and then got comatosey again and this time my dad knew better than to call 911. So my parents prepared for her to die at home, the very day she was to have her last test and get on the list for a liver transplant if she passed. I couldn't take it so after 2 days I called the transplant hospital, Shands at the University of Florida, and told them all about hospice and the Primary . They hustled her there by ambulance so hospice couldn't get her. They put her on the transplant list without the last test. They kept her a week and had my dad drop her HMO but she wasn'tr gaining weight and they'd not dreamed she was such a skeleton since they'd last released her in August at the HMO's insistance , and decided she was too weak to have a transplant and had to go to a rehab center and get therapy to get stronger first, so sent her to Bear Creek Convalescent and Rehab Center in Hudson by transport. Along the way she pulled the feeding tube from her throat and had to go to a hospital to have it reinserted. That took 3 days. It shouldn't have--and she got no therapy those 3 days. I heard the doctor tell her they were going to put a feeding tube all the way to her large intestine and secure it so it could never come out again. That worried me as she didn't eat from it, just took her lactolase that way to keep from vomiting. I told her to tell him she was going for a new liver. "Ok" she said. OK wasn't good enuf--you see a doc while in hospital about 5 minutes a day and she might not see him again before surgery. So I called Shands and told them what was going on. NO no no they yelped--that kind of feeding tube would interfere with a liver transplant and she'd go off the list and die. . So thery advised the hospital of this and it was decided not to give her one at all. Now she is in the rehab convalescent center eating corn pops , ravenous. She wanted pizza. She wouldn't have the cereal if I hadn't brought it to her, hates institutional food, and the kinds they served--spicy spaghetti, meatloaf, chicken salad sandwich--she hates all 3.Talking to me on the phone , not scared but sort of unhappy that she is getting forgetful, she wanted to know why if she had an appetite and it was vital she eat, she could not eat food she could tolerate, like hamburgers and pizza. For awhile March 18 she did not know where she grew up in Michigan, who Mike was, my name-- when I asked her if we'd had any siblings she said "yes." When I asked their names she said "I don't know." I said "Terry and Tony--don't you remember them?" She said "No, I'm sorry, I don't." Then I asked Mom's first name and she said "Terry." I asked what city we grew up in and she said "Terry?" She guessed my name was Doris and Marina, my 11-year-old she is so close to , was named Nancy. She had no recollection of my husband Dan, daughter Mary, 16, or her boyfriend of 34 years. But 12 hours later, she was herself again and couldn't believe the incident of memory loss really happened. It scares her. It's so touch and go . She's her, she's forgetful. But they can transplant people in comas; I guess being confused won't matter.The terminally ill lose memory and emotion as they reach the last stage, the news about Terri Schiavo explained today; and so don't really suffer as they die. But she was suposed to exercize and eat and get a liver, not die! She has struggled so hard for 8 months and her family with her, her transplant our entire focus almost always. The kids' grades show it. When I think of how that hospice lady tried one last ditch-effort to keep her there to die--! The place didn't have any life-saving equipment. If she choked on the hot apple pie she was gorging, she died. If she had a heart attack , she died. If she fell getting out of bed trying to find a nurse and cracked her skull, she died. No life-saving techniques were mandatory or even offered. You left that hospice with a blanket over your face period. They NEVER call 911. And here the liver transplant facilty had been working with her so long, and they'd gotten 99% of the requirements out the way. What a time to give up! But no one told my dad give it a few days, see if she comes around. Shands was appalled when they learned she was put in hospice. She had a good chance, they said. She'd have gone to the top of the list, they said. The co-ordinator told me "They're killing her!I can't believe it!" Then they bent some rules and got her there w/o that last test. But now she's back a few steps from all the days she lay immobile and didn't eat. I blame the HMO and hospice. They all knew she was going after a liver with a vengeance. |
Click here to add your text.So why aren't there 100 people outside Debbie's place protesting how hospice tried to kill HER? They still may have succeeded, as they wasted days off her life where she needed to be eating and getting stronger. It's all political, about votes , not about individuals. I think this hospice, Hernando-Pasco Hospice, (352)7541476, , should be closed down for what it does to keep people from recovering conciousness and getting out, and keeping it top secret from the loved ones that their loved one is coming to by doping her to the nth. I also think the HMO, Universal Health Care, (866)6904842,(ext. 455 for her smug primary, Mercely Devabose, who told her as she struggled to get on the list "You aren't facing reality--you know you're going to die"), should be closed down. They aren't about saving lives but about saving money. There should be a thousand people outside each place demanding they let Debbie live, just like they are for Terri. There's no difference. But thy let Debbie die while they fight for Terri. Debbie knows who I am today and made a joke. I said I've had her for 50 years and don't know what I'd do if I lost her now and she said "Fifty years. That's a long time. It's probably how long they'll take to feed me here." yet she thought the tv remote was her phone and couldn't figure out how to use it. No one bothered to tell her in this rehab center that there are no room phones and they walk a cell phone to you. When I called her the time she was lucent she said please don't hang up while I ask for food, I don't want to lose you, I'm lonely. I said don't worry. Then she tried all sorts of buttons on the tv remote going "hello? hello? I need food! Can anyone hear me? Is anyone there?" then she suddenly said "Dede? Dede where are you?" I was yelling "I'm right here Debbie!" but she said "Dede! Please don't be gone! Shit! You're gone! Dede I need you where are you?" And started to whine, the first crack in her co-operative maturity since she got to Shands. Debbie hates changes in plans, being the adult child of an alcoholic and having a very unpredictable, unstable childhood . When they came to take her from the transplant hospital to the rehab convalescent center I was on the phone with her and she said "Dede I'm scared. I don't want to go. Please don't leave me all alone there." But she wasn't whining as she had whined every sentene for 2 months. She was mature and coping--I was so proud of her. Shands had really fixed her mental state. She was finally getting her feet and making her room there her room by adding photos of my kids and all. After being betrayed by her Primary physician so bad, she was trusting people again. Then they suddenly shipped her away. Yet she stayed cool about it. Oh, I was so proud of her. But they then dicked around for a week and a half so far about getting her to her physical therapy. her HMO is still hers til April 1. The center says her HMO calls the shots about her physical therapy. She has the same primary out to kill her to save her employer money til April 1. And this woman let her languish w/o exercize for 10 days. No one fed her, even water, the second day, saying she was having surgery to inplant a feeding tube that day. So she was not getting better but worse as this all played out. Where's the concern ? This can happen to you. I've been all over the place on this issue. My teen and I read Johnny Got His Gun last summer, thoughtfully. One of my dad's employees ran over his 2 kids on a snowmobile with his car and the boy was comatose 2 yeas but came to and revived completely. I was in a coma for 5 days at age 19. I also had cardiac arrest and like terri Schiavo, am one of the 5% that survived it. My grandparents' good frind ted Wiliams has not been allowed to die but is frozen somewhere in case science gets smarter someday. And debbie needs a feeding tube again, havin stopped most eating since leaving Shands 2 weeks ago. Shands sent her to the rehab center to get physical therapy but her HMO won't pay for one minute of it so she has had to wait all month for Apri 1 when her HMO is finally dropped.(When you can them they stay til the first of the next month, anyway) That's right, she was sent for physical therapy to get strong enuf for a transplant--while on the list for one--and the HMO has refused to let her get any therapy the whole month. Shands took her off the list the other day til she does get the therapy--she has 9 days to wait still til it starts. That's really doing her good, as she loses her mind during the long wait. She was almost ok! She was so friendly and there and smart 3 days ago--now she is totally lost. She can't get the feeding tube til she gets off the HMO. She's not eating.She thinks she is. She's very crabby and in a lot of pain .Why can't the federal govt intervene for HER, give her physical therapy and a feeding tube? Dismantle her profiteering HMO?Say it would be unconsciencable to let HER die? No publicity in it? Please don't let them murder my twin sister! |
CliAll these people saying that removing Terri Schiavo's feeding tube is murder of the disabled. What of HMOs that deliberately stall tests til a transplant is too late? What of hospices who don't let patients regain conciousness on purpose?ck here to add your text. |
Debbie and I Dec 25, 2004 |
Debbie and I, confirmation, age 10 |
left me, right Debbie. We have been together fifty years. We were once one person who divided into two in the womb. She always wondered why. Maybe so I could save her life? |
ClThey gave Debbie no toothbrush in hospice. Hospitals always give you a toothbrush.This hospice didn't. Isn't that weird? Debbie may have been starving because she was having such violent diarrhea before she seemed comatose. Articles on Terri Schiavo say when they starve they may seem to go in a coma. feeding her may have rallied her. Or she wasn't drinking the lactolase and once given it her brain was cleared of ammonia. She's also had several blood transfusions and another may have wakened her. What's the difference between taking out Terri's feeding tube and letting her die, and not feeding my sister and doping her so heavy she can't wake up to eat, and not giving her her lactolase , and totally depriving her of her liver transplant she was so close to , making her too weak to qualify while deliberately imprisoning her far from anyone that knows her so she can't be rescued but just dies like everyone else who's liver fails who wasn't a transplant candidate about to get on the list? The transplant team had been working with her for 8 months. Maybe the primary doctor, Mercely Devabose, doesn't understand the relationship that developes between the patient and the transplant team. Maybe she thought Debbie was just taking tests she read had to be negative to get a transplant and then was going to go seeking one. Maybe she didn't know that each transplant facility has an entire crew that work with one patient--nurses, docs, surgeons, psychologsts, social workers , physical therapists and others that all work together --they aren't just thrown together at surgery--they are like a space shuttle crew. When a liver becomes available for harvest UNOS may call 4 transplant teams and all 4 prep while UNOS decides where to send it--so if something goes wrong (patient suddnly gets flu, surgeon in car wreck) there is another team ready to take on that liver, keep it alive, and make the best use of it. They plumb that liver from a person not unlike Terri Schiavo , so my heart transplant doctor told me to give the thumbs up to every motorcyclist I see without a helmet ;"That could be your heart someday." Tell him to keep on exposing his head to destruction so his body might go undamaged.That's the only place you get organs--good organs, dead brains.We're asking society to pull the life support from some to save others. Transplant teams get all the ducks in a row: the patient must have a back-up support system in case their first choice gets in a wreck or gets pneumonia , to drive her to appointments and to ER at the transplant facility if she shows signs of organ rejection, make her appointments, make her eat and take her meds even if she is sleeping through the time they are due. it is totally absurd that Debbie's primary care physician told her she wasn't facing reality as she knocked back the requirements so steadily and single-mindedly to get a liver. It must have been calculated to cause uncertainty. How else can you explain it? Here are 20 -some professional medical people in one of the world's top 12 transplant hospitals working with her, on the phone with my dad weekly, getting faxes from him almost daily of new medical records, and Debbie's primary tells her (privately) they are daydreams or figments of her imagination or something. What gall! What motive?That's what makes us think the HMO told Mercely "Block this transplant no matter how." It's the only way she could have been so sure it wasn't going to happen. And what's the deal with the hospice giving Debbie two scripts for oxycontin? First they didn't tell Debbie's family they'd had her on Haldol, then they announced on their own that she was getting prescriptions for every drug she got in there, then they give her a script for oxycontin. Then my astute father says "She was on two medications while I was visiting her here" and they relent and furnish a second prescription-- for oxycontin. One is for 40 mgs, the other for 20. Is there sense in that? Why not all 40s or all 20s? Reeks of a cover-up, doesn't it? Why are they hiding the haldol if there is nothing wrong with giving it to a person we hope will come to ? If Debbie dies it is from the delays this side-trip to hospice-hostage put her through and the delays the HMO put her through deliberately to save the cost of an organ transplant. But no one is outside her nursing home crying, praying, and pleading for her life and she still has memories. She's somewhat confused sometimes and very bothered by it, but she aint heavy, she's my sister, I love her, I want her, don't take her from me, none of you knew her and me to just take her from me....I want and need my sisser. please Republican Congress, save my sister!!!! She's still here! Is the HMO killing her or liver failure? Well, the HMO enticed her by saying they pay all hospitalization after the 6th day. Since then , whenever they let her go in a hospital, they release her on day 5 no matter if the hospital says she is in no shape to be or not. Then they let her come back in through ER 24 hours later, which they call another "Day One."A day she pays full costs. DeLay talks of no American being allowed to die if they can get optimal care, but there are no special midnight sessions of Congress to save Debbie from her HMO. No one stops them from dragging this out til it's too late, or the hospice for artificially keeping her drugged overboard and then hidsing that they give her Haldol. She'd never been on oxycontin and the place was giving her 60 mg every 12 hours --I've been on 20 mg for 3 years and 60 mgs would make me a zombie.Why isn't our government stopping Debbie's murder? No political gain? If they step in for Terri they should step in for any of us. Hospitalsick here to add your text. |
Debbie in Shands Hospital at the University of Florida, Gainesville, March 14, 2005. Doesn't the fact she's a skeleton now make you want to cry? Doesn't it scare yu? They could have gotten her tests done 5 months ago and she could have had a liver 4 months ago. See how bigger she wasat Christmas? This isn't murder but what's happening to a 15-year-long incognizant woman is???? |
" "The U.S. Constitution protects the life of a human being taken by other human beings needlessly -- " House Majority leader Tom DeLay , re Schiavo alone, not Debbie too. and why not!! " A young woman in Florida is being dehydrated and starved to death....She is alive. She is still one of us. And this cannot stand" (ibid) The moral bankruptcy of -- why not the Medicare HMO! "No therapy. No nothing...what kind of (society) is that?"ibid "No right is more sacred than the right to life. In our deeds and in our actions, we must build a culture of life. Every life has a purpose and no life is without meaning." Rep. James Sensenbrenner, R-Wisc. "We feel every moment is urgent, we consider every second as prescious in terms of saving Terri"(Gibbs) "If we do not draw the line in the sand today, there there is no limit to what democratic principles this Congress will ignore or what liberties they may trample on next"-- Jim Davis. ( Medicaid caps! HMOs geared to and allowed to only profitize!) "You rode into office on the rhetoric of family values. It's time to turn your rhetoric into results"-- Randall Terry, Natonal Right-To-Life activist "She talks and laughs and expresses likes and discomforts. It won't take a miracle to help--It will only take the medical care and therapy that patients require." DeLay |
How It Works by Debbie Young, copyright 2004 He hastened someone's final breath; he made somebody dead. And so, his wages must be Death. That's how it works, they said. He has killed, and so we must do to him as he did. It is only right and just. That's what they told the kid. But then, the child asked in awe, if he must die because he took a life, and you must do unto him as he does, then who must do it unto you? and who must end your days? And who must deal with all of you according to your ways? We can answer that, they said, all self-assured and smirking. The way it works is when it gets to us, it just stops working. ---Debbie wrote this about capital punishment |
Just explain to me why Medicare HMOs can take their leisurely time treating someone in liver failure trying to qualfy for an organ transplant , even telling the patient that they aren't facing reality if they don't accept that they are dying, while the transplant team is at the same time scheduling the patient for a meeting with social workers to discuss her support system, which costs 3 families $40 in gasoline and $80 in motel rooms, each. to get to ; and then when the HMOs mandatory delays cause the patient to slip into a stupor for a few days, rush her to a hospice aginst her and her entire family's wishes and keep her there , doped on Haldol and oxycontin (neither of which she had ever been on before in her life) so she has no appetite or awareness of what she needs to do to live or the situation she is in , while the hospice doesn't do a damn thing when she doesn't eat or exercize so that when she finally is rescued (she's lived almost 2 months since she left hospice, and last night drew a beautiful face with pastels and read a chapter of a novel), she is so weak she can't get the transplant without expensive physical rehab and a feeding tube, all of which there is no time for. Why are Medicare HMOs allowed to kill people? And what are these people like Tom DeLay talking about, pretending they are stepping into the Schiavos' lives because an American woman's life is at stake when they let another American woman with her whole mind left DIE so her HMO can save money? Who do they think they are fooling!!!! |
Hurry---there's no time!!!! (And the hospice is billing her $3,800 for 5 days there. This is not the world I'd want to be sick in!) |
