| Dons Story |
| Fighting End Stage Liver Disease And The Veterans Administration |
| If you have comments on this page please email me: I will do my best to answer you and post your comment if you so desire. negative or positive. I would like to start a forum on this subject |
| I will be from time to time adding more to my page concerning our experiences with the VA,links to information on ESLD,OPTN,UNOS,How to read labs,ETC, and how the transplant program works from my point of view. I went into the whole experience with blinders on.My desire is to help others faced with the situations I was and in some way answer questions that you will not find on a one sided web site.I in no way want to discourage transplant but to help others to understand there is much more involved than what you may be told.(Especially if your transplant is through the VA and I will not lie(If it has been diagnoised as alcohol induced.)At this point I will be posting mostly filed complaints which have never been resolved.I have went ever known route with no answers.I do not intend to harm any one by what I will be posting (BUT MAYBE I WILL GET SOME ANSWERS) |
| October 27, 2003
Dear Sirs or Madam, I recently received a letter from the Veteran's Administration bragging, and I am very aware of the many physical building improvements going on in and around the Huntington Area Veterans Administration Medical Center. While, admittedly, many of these changes are long past due; without similar changes to the quality of medical care offered at Huntington VAMC money spent on physical changes is to no avail. I ask, "What good is a pretty building to a veteran dying of a treatable, even curable condition when quality medical care is not available?" My husband is a U.S. Army Veteran, college graduate, former Chief of Police, son, brother, dad, Cracker (he's not old enough to be Grandpa), and suffering from end stage liver disease. I believe his advanced disease is due to failure of the VAMC to correctly diagnose and treat gall bladder disease and diabetes. The diagnosis for liver disease was originally made at the VAMC in Jacksonville, FL in 1995-8. At the time my husband was living in FL with his mother. He was given vitamins and medications and told he would die within months. He was not given information about the potential for transplant nor was he given any advice as to diet. Just go home and die. I am unclear about how the diagnosis was made as we have been unable to get medical records from these dates. My husband does not remember having liver scans or ultrasounds.I am aware a liver biopsy was never done and to this date still has not been performed. Because of my husbands altered mental status (we now know due to toxins having built up in his brain) it was assumed he was an alcoholic because he answered he did enjoy beer. I believe, 9 years later, had he been accurately treated for gall bladder disease then, his health would be much better now. In 1999 my husband returned to WV,he had stopped drinking at this time and began treatment at Huntington VAMC. At this time his condition was stable and no tests were scheduled to verify the accuracy of the diagnosis. We trusted the doctors in charge of my husbands care to do what was right. My husband had continuing symptoms of nausea, indigestion, back pain, and stomach pain among others but the doctors seemed unconcerned. Because the deterioration in his condition was slight it was easy to deny the existence of disease, so we did. The only advice given to us was "continue the medications and you'll die soon." At the end of 1999 my husband's health slipped drastically. While visiting our daughter and her family over New Year's 2000,1 had to return home earlier than planned due to concern about his condition. He had been unable to make the trip to Richmond, VA. He sounded so much worse in just a few days. His mental status was way off. He continued to bounce between bad days to good days for all of 2000 with progressively more bad days. My reluctance to accept the disease led me to not question the medical care. At this time he was slowly losing touch with reality, he became paranoid and unable to make decisions on his own. But I tried to pretend everything was fine. Denial is very powerful. By the end of 2000 his health had fallen to the point we could no longer deny the facts. It seemed what the doctors had predicted so many years ago, were finally coming true. I can't help but wonder what today would be like had his gall bladder been treated then. For the next year my husband was in and out of Huntington VAMC. At this point it had not been mentioned to us that there may be another alternative, or that anything other than his past alcohol use had caused his disease. It was sometime this year we found out gall stones had shown up long ago but were not treated. My family and I began to really dig into researching his condition and to question everything the medical staff did We were met with open hostility. The care he received during his admissions was appalling and continues to shock me today. One example when he was given a Lasix IV when he has a known, documented allergy to the drug. He was crashing before our eyes (mine and the doctors and nurses) when a nurse walked in, noticed the Lasix IV , jerked it out and in doing so saved his life. By this time I was exhausted, mentally and physically. When I asked the medical staff for help, I was told my only options were a nursing home or hospice. 1 chose hospice believing it the better of only two. Exactly when and in what order things happened during the last few years is hard for me to remember: what happened is forever engraved in my mind. No amount of stress can confuse such incredible acts of negligence. We discovered his diabetes when one night 1 was home alone with him and he was totally crazy, trying to eat his blanket. I kept calling the doctor because my husband had just been seen and had blood work 1 wanted the results. 1 was told nothing is wrong we'll call you if there's a change. My husband was a vegetable. I thought I would loose my mind, too. after 5 days of calling,Finally the doctor called, "Get him to the ER now! His sugar is 784." Later study of medical records show chronically high blood sugar levels for years. We were never informed or advised of diet. He is now insulin dependant. Another instance I will never forget is one in which I had taken him to the emergency room not knowing what was wrong.He was not aware of anything going on.I found that his ammonia level was 234.The normal is 10 to 32.He was allowed to sign out AMA. I asked to speak with the so called doctor.He said he was ok to leave.I insisted they keep him,They sent us to mental health on the way I ended up chasing him down over the hill behind the hospital.He had no idea where he was.I finally get him to mental health.The evaluation was a joke.He knew his name and social security number and smelled of fecal odors but otherwise he was fine as reported by the social worker. My daughter lived closer than I did to the hospital so we went to her house.She helped me to give him lactulose to help get his ammonia down.Remember we are dealing with some one who has no idea what is going on. I was up with him all night.The first thing the next morning we start receiving calls stating a mistake was made please bring my husband back to the emergency room. There are also issues of cleanliness and patient protection from infection relating to fluid removal from his abdomen, IV sites, tubing, foot and mouth care, proper administration of medication and general bathing while an inpatient. I have notes about these instances if you are interested. If I were to write a letter containing all the acts of negligence, improper care, rudeness and general apathy of the Huntington VAMC staff: its pages would be so numerous you would not read them. If you are interested in my husband's lack of care, please contact me and I'll tell you as much as you can stand to hear. During this time one Doctor made us aware that there was a possibility for transplant which starts a whole new story. I will include his fight with the transplant coordinator which went on approximately 3 years later in our story. We were able to arrange to be seen in Richmond, VA at McGuire VAMC. While there we were educated on his disease as we never had been. He was listed on the liver transplant list, and during his inpatient stay at McGuire. my husband's gall bladder ducts were opened. His condition improved instantly and drastically. However, we are still battling improper care here in WV.At this time my husband graduated Hospice. We are traveling once again to McGuire VAMC this week for tests we were unable to get scheduled here in WV. Oh, of course, when HVAMC found out we had made arrangements ourselves we received notification the tests had been scheduled at HVAMC. I am firmly convinced his advanced liver disease is due to failure of the VAMC to accurately diagnose and treat gall bladder disease and diabetes as well as improper information provided about liver transplants once his disease had progressed. Quality, adequately trained doctors and nurses as well as administrative staff are more important to us than a pretty building. I urge you, for veterans everywhere, spend money where it really will best be utilized. Respectfully, Barbara Dingess Updated:03/29/2005 It has been a long battle and is still continuing:So much has happened since my initial complaints Failures to check labs,to update test and still awful neglect concerning my husbands medical care especially concerning his Gallbladder. Nothing was ever done because we were told he could not be put to sleep.(A LIE) .He recently had a ERCP done ( After intervention by my self and daughter at another hospital.) and he was put to sleep. A mass was found in the common bile duct and we are now waiting on the results.Quite a lot has happened in the last couple of years which I have documented.Way to numerous to write it all. The hospital where the ERCP was performed was appalled at the lack of care my husband had received from the VA. After reviewing my husbands records the mass had been originally found in 2002 and was seen numerous times on ultrasounds,cat scans and MRI's. I had never been told. My husband also believes if the gallbladder were removed he could be normal again. He has called begging doctors to do something but every time he has gotten the test scheduled the VA has intervened to stop it.WHY??????.A veteran whom they had placed on hospice to die 5 years prior and is still alive. But for the grace of God he or I could not of survived what the Va has tried to do. Because of VA neglience my husband is now inactive on the transplant list. We have both now put all our faith in God that he will intervene in this situation. WE ARE EXSPECTING A MIRACLE I pray that after all this is over that no one else will have to go through what we have.This is only bits and pieces of what we have had to suffer through the hands of the VA. I hope that at a later date I will be able to share our complete story.Which not only envolved us but a complete family,friends,and a small town. Update: 04/07/2005 Dons test came back negative so we made a private appointment to have him evaluated by a private surgeon. to have the gallbladder removed.The surgeons first response was go back to the VA.We have Medicare and Medicaid. What is the problem?.He somehow had gotten my husbands VA records? After explaining our situation he refused to touch my husband because of the damage done to the bile ducts and the chance of bleeding. We were made a consult with a VA surgeon after we had made the private one.How do they get our information?Am I becoming paranoid?.At this point I have no idea what our options are. I will continue to update as more information becomes available. |
| The following letter was sent to the administrator,director,nursing supervisor of the hospital,The President,senators,governors,newspapers.it was posted on the Va homepage under complaints,class action lawsuits,everyone I could think to email.After I had met with hospital staff to try and resolve the issues with no satisfaction. They were all forwarded back to the Huntington VAMC |
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| Posted: Wed Jun 30, 2004 3:30 pm Post subject: Veterans Medical Care(Lack Of)
-------------------------------------------------------------------------------- Anyone out there having problems with Va Is it possible to sue the goverment I have went every route I know to no avail My husband went for approx.16 mos with undiagnoised and untreated diabetis I checked back over his labs. also untreated gallbladder. He is waiting on a liver transplant,He was listed in April of 2002.He has blood drawn every thursday but no one reads them.He was just recently hospitalized for untreated urinary tract infection which went untreated until he was in renal failure.My complaints keep getting lost in the system.I have pages of neglect on the Drs.and nurses concerning his overall medical care.What do you do By the way If you complain it will be turned around as if it were your fault and you will be treated differant. Back to top WiseLayman Guest Posted: Tue Jul 06, 2004 12:35 pm Post subject: Alternatives To The VA -------------------------------------------------------------------------------- I am not an attorney, but it looks pretty obvious that the VA is not being very responsive to your needs. However, Doctors and Nurses (and most medical personnel) must answer to state and other regulators in addition to whomever their employer may be (I would think this is true of the VA too, their doctors have to be licensed to practice, and most cross practice with multiple faciltities and agencies/companies). Consider detailing your complaints to the state's medical association, the state medical licensing boards, the American Medical Association and any other agencyof comeptent jurisidiction. I cannot tell you how many issues seemed unresolveable until the people involved were forced to answer to independent third parties that the complaintant went through the trouble of identify and filing complaints with. And then, you can alwasy enlist the assistance of your local and regional news media, TV, Radio and Print - which scares most of these people more than anything else. They fear the truth wll be spread and once associated with a reported scandal, it can defenitely cloud their rosy uncaring futures. Good Luck to You. Back to top barb11149 Joined: 02 Jul 2004 Posts: 3 Location: USA Posted: Tue Jul 06, 2004 6:33 pm Post subject: -------------------------------------------------------------------------------- Thank you so much for your insight.I just yesterday contacted my Governor again,The honarable Bob Wise. I have considered the media but I was hoping the issue could be resolved without doing this.It is most definatly my next option.My husband is concerned that my complaints are going to effect the care he receives.I don"t feel it could be much worse. Thanks again.I think you just confimed my next step _________________ BGDingess |
| Posted: Thu Oct 14, 2004 7:14 pm Post subject: Still No Change In Veterans Medical Care(Please Help)
-------------------------------------------------------------------------------- As of Today 10/14/2004 after a 5 year battle with the VA nothing has changed.My husband is still on transplant list.I received labs from last thursday today his Creatine level was 2.0.I received no call from doctors.I called his coordinator to no avail.My husband has been on the verge of renal failure 3 times.What does a wife do?Is this adequate care when I have to call every week to find out the results then call the doctor,Who shows no concern.or doesn't even call back.As of right now he has not had necessary test to keep him updated.If they would call him for transplant,It couldn't be done.Somebody please help me.If you have seen the movie John Q you would completely understand what I am talking about.His son could not get a heart because of lack of money.He went through all the steps I have to no avail.He was pushed to take over the hospital.His son got a heart but he went to jail.(A True Story)I sit and cried because I felt his every frustration.I have been there and still am.Is there an answer?At this point I am trusting God to keep my husband and to heal him because the system sure doesn't work.As I stated before I have went through all the right steps concerning the complaint system but it doesn't work.I'm tired and now sick myself from all the tension related to trying to get things changed for all veterans and those with out adequate insurance. I quit,I just can not do anymore.Somebody please take over my fight. _________________ BGDingess |
| UPDATE: November 25th 2005 Well,a lot has happened since I last worked on my page. After all we have been through.In May of this year things began to change drastically.I still don't know for sure what caused the changes.I think it was just a lot of small things that over whelmed both Don and I.After my fall in August of 2004 it became very hard for me to take care of him the way I had been.The fight with the VA.Not getting a transplant after 2 years of waiting,Losing a brother in law,plus the doctors started giving him anti-depressants,sleeping pills.All the medicines he had refused to take. Any way,He went on a binge,Got involved with supposedly old friends and in June asked me to leave. It had gotten so bad I just couldn't take any more.I was physically and mentally drained so I left. I have lived with my daughter and family until the first of November. I got an apartment. By the way,He filed for divorce a week before our 36 th anniversary on August 26th. We were divorced Oct,18,2005. I took only my personal items so it is a litle rough right now but I will make it by the grace of God and yes it still hurts and I truly worry about him.But there is nothing else I can do.He is in Gods Hands. If you pray please remember him. (By the way the VA now refuses to see him: How ironic.They did the damage now they have finished their job. A family destroyed because of their lack of concern or compassion. All involved will receive their just reward.) |
| Donald D Dingess Born:May 17,1946 Died:January 02,2006 |
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| Friday May 19,2006 A lot has happened and I have been unable to update my page until now: Donald is finally at peace: He was found alone in his bed Jan 2,2006 when his homemaker came to work. Because of everything that had happened I had not seen him since Christmas Eve.He was not angry with me and I was not with him.His mental state was to the point I do not believe Don even realized what was going on.His doctors were keeping him medicated to the point that he was not conciously aware of what was going on.He was still walking around and doing well other than his mental state when I saw him. He just went to sleep and didn't wake up. The ambulance would not take him to the hospital (He was pronounced dead over the phone)MORE QUESTIONS? His death certificate says complications from sugar.(I WILL NEVER KNOW) I also requested an autopsy again I was told NO!!!! Per his wishes he was cremated. His favorite song was: If I Could Turn Back Time. If I could I know I would have done some things differant.I would not have let him run me off.I don't care what the reason was.I would have insisted they handle his death differant. Only God knows all the unanswered questions and God has given me a peace that I know could have only came from him.While I write this I am crying and smiling.Remembering the good times.Yes I miss him terribly and I do believe he was mistreated terribly by the VA but I am not the judge and I have to forgive in order to heal.I pray that God have mercy on everyone that used their positions to do harm to Don,myself,his daughter,son-in-law,2 grandsons now 5 and one to be 8 on the 20th.they always had their birthdays together.His 92 year old mother and sisters and brothers.Don was deeply loved by a lot of people and was not just a number.I am sorry that my anger is showing but with time I know God will heal the hurt so that I can forgive.I can not write any more now.Please remember his family in your prayers. Blessings Barb |
| By the way: I just sent the VA a copy of this page.I know I have to get over it.Maybe with time.Perhaps putting blame some where is part of the grieving process. I received no kind of Veterans benefits other than a flag (Which I am very thanful for and a Plague for his grave.) They would not even pay to bury him.I am still paying on the services and cemetary.Our divorce was final 31 days before he died and was not even in the paper until a week after his obituary.That is why they would not pay his burial expenses.This should have not had anything to do with me.Don is the one who served His Country.The silly thing might have thought he was helping me anyway that's enough for now. |