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Site MissionI've created this site to relate my experience as a cancer patient at Shands Hospital in Gainesville, Florida and to alert people considering treatment there to problems with the hospital. The information presented here is entirely my opinion and relates my often negative experiences while being treated at Shands for a serious illness. The doctors are real, their names have been changed. Any facility can make a mistake. However, Shands has consistently made serious mistakes in treating me in multiple departments. That shouldn't happen. Period. This site will continue to develop as mistreatment continues. I believe I am stuck with Shands since my treatment has begun there. I don't know where else to go or who to trust with my health care. |
Links http://vvv.topix.com/forum/city/gainesville-fl/T5NK9B78K7JT9vI5F
On five occasions Shands has tried to overcharge me. The worst was just prior to my operations when I sat at the finance desk. The woman told me I owed $1,600.00. Did I want to write a check or put it on a credit card? They put a lot of pressure on me, after all I had to pay this because my surgeries were going to happen. I have excellent health insurance and this didn't sound right. I said I'd think about it and called BC/BS who said I certainly didn't owe it. The hospital was trying to charge me the difference between what they billed as full price and what they accepted under contract with BC/BS. It was dead wrong. BC/BS fixed it. Shands has been notorious for double billing and other overcharges. Shands is supposedly a large professional establishment. They know better than this and I believe their billing practices are intentional. You see I went back to the finance lady and gave her the BC/BS reference number proving I didn't owe the $1,600. She then changed her story from "I must pay it" to "oh we just like to try and collect that". It's a big difference between you must and we like to try to collect that. Shands billing can be summed up as unscrupulous. |
Why I was treatedEarly in 2008 I was diagnosed with oral cancer. Eventually I was referred to Shands Ear, Nose and Throat Clinic and a highly recommended doctor whom I will refer to as Dr. W. Then the cancer spread to the lymph nodes in the right side of my neck. This was the beginning of my journey with Shands. A journey of misinformation, confusion and mistakes. |
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Ear, Nose and Throat ClinicDr. W was the big name I was referred to. He was the draw to Shands and the ENT Clinic. He was the man to see. It turned out that he saw me initially and then I was pawned off on staff, rarely to ever see Dr. W again. He was too important to actually see patients. Staff was whatever nurse, nurse practitioner, intern or resident happened to be around when I had an appointment. They rarely knew me and were often unsure of what to do or even what medications I was taking. It was all supposed to be in my file though for instant access by all staff. Yet, they all too often couldn't find my important patient information. But, they were there to treat me. They were my health care for a life threatening illness. I was told I would be fine after the surgery and the cancer would be gone. This wasn't accurate. On two occasions when I was released from the hospital I was given prescriptions that were written wrong and the pharmacy would not fill them. The pharmacist explained what was wrong with them and what needed to be done to make the prescriptions fillable. I had to go back to the hospital both times, park in the garage, go up to the right floor and then locate the young, inexperienced doctor that wrote the script and get it fixed. There was never an apology for the mistakes. This doesn't sound like a big deal unless I put it in the perspective that I was just released from the hospital terribly sick and weak. Barely able to walk. I had to do the walking, stair climbing and driving necessary to get the prescriptions written correctly, filled at the pharmacy and finally home. All because of young doctors that didn't know what they were doing, yet they were treating me for a life threatening situation. |
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My Conclusion about being treated at Shands HospitalDon't do it. The mistakes you could be subjected to are not worth the risk. |
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Fiasco of OperationsMy operation to have the cancer surgically removed was first scheduled for a Friday. I was told by Dr. W that I could recover over the weekend and return to work Monday. I arrived at the hospital in the morning and was told to wait 2-1/2 hours until they were ready for me. Finally I was taken to pre-op at 2:30PM in the afternoon and hooked up to an IV. I should state that I have an extreme aversion to IV's, but I got through it. I laid there all afternoon. At 6:00PM I was told they were cleaning the operating room for me and I would be next. At 7:00PM I was told they were getting fresh OR staff and it wouldn't be long. At 8:00PM I was told they couldn't get any staff, my operation was canceled and I should go home. The IV was removed and I left quite emotionally spent. One week later my operations were rescheduled at Shands AGH which is an satellite facility of Shands, Gainesville. This smaller hospital was old and sure didn't seem clean enough. So the surgeries were performed by Dr. W and over. I never saw Dr. W again until a month after my operations. Just various staff that stopped by. I was in the hospital for one week with a rough recovery. |
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ComplicationsAfter I got home I developed a severe infection in the surgical sites. Dr. W had not closed up the inside of my mouth adequately so liquid nutrition seeped into my neck surgery and a massive infection developed which poured out of my neck stitches and ran down my chest. I called the ENT clinic to report what was happening. They felt it was just something that could wait for a day or two until they could work me in for an office visit. When I was seen by whatever resident was available they sutured a drain tube in my neck without any local anesthesia. The infection was bad enough to put me back in the hospital for five days. This time with a feeding tube up my nose and into my stomach because no nutrition could be taken by mouth. After all Dr. W hadn't closed up my oral surgery properly so nothing could be in my mouth like food or water. I finally went home again with the feeding tube and had to feed myself and administer medications through it with a hand pump. None of this would have happened if Dr. W had closed up my oral surgery properly. About one month post-op I began getting feeling back in my tongue, mouth, face, upper chest, neck and right shoulder. The nerves had been damaged during the surgeries. It was just a complication no one thought to mention pre-op. My tongue seemed to feel something different with a rear molar. Like it was broken. I called the ENT clinic and it took a few days to elicit the admission that Dr. W had broken a crown off a perfectly good molar during surgery. A bit clumsy? It now seems that the crown has been lost so I will face the expense of having a new crown put on. Shands AGH also lost my drivers license and insurance ID card. At least I hope my drivers license is lost and not being used for some purpose like identity theft. I am now almost two months post-op and still have little to no feeling in much of my face, tongue, neck, right shoulder and upper chest. |
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ChemotherapyThis was one of the more pleasant departments I encountered at Shands. Dr. S is an OK guy. If they could make up their minds on what treatment to give it would be better. My chemo consists of one treatment per week for six weeks. They were going to insert an IV for each treatment. They neglected to mention that there would also be blood draws to monitor me. It seems that chemo affects many things. Just as I was resigned to all those IV's they changed their minds and decided to insert a PIC line in my arm which is like an IV threaded up inside you. It stays in for the duration of treatment. This wasn't fun at all. I wish they would make up their minds and not spring surprises on the patient at the last minute like this PIC line which required radiology and doctors and specialists to insert. It's not supposed to hurt, but that's another fallacy. Finally I had my first chemo treatment last Thursday. Four hours long. The nursing staff was great. The down side was the pharmacy. Prescriptions were called into Shands pharmacy for important medication for me. Anti-nausea drugs. But, chemo ran so late the pharmacy was closed. So I tried to get my medications Saturday morning. Well, the pharmacy was closed, I couldn't get my meds and I was feeling a bit off and needed them. I called the emergency after hours cancer help number and got Dr. M who had a problem with English. She couldn't understand my name or date of birth. She also couldn't access my records and didn't know what to prescribe. This wasn't what I expected from the cancer emergency help line. In fact Dr. M hung up on me with no resolution to my medical needs. Then I called the main hospital number and asked for a supervisor who got my chemo doctor to call me (on a Saturday) and he phoned in prescriptions to my local pharmacy. When I picked up the meds I was told that Shands hospital had already charged my health insurance for the prescriptions I never picked up or signed for and I would have to pay full retail for my chemo meds. Just one of them cost me $515.99! 6/13/08 I've been through 2 chemo sessions now. My nurses are excellent. What are they doing at Shands? I completed a total of six radiation and chemo treatments over six weeks. |
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RadiationMy experience with radiation has been very limited so far. Just the preliminaries. You see, my first radiation treatment didn't happen because Shands radiation equipment wouldn't work when their computer system went down. This caused me to lose five hours from work waiting for my treatment. I did receive a very nasty phone call from Dr. I in the radiation department. My radiation doctor. He chewed me out in no uncertain terms about my missing a radiation appointment and accused me of swearing at one of his female staff. This jerk was way out of line. I explained I missed a radiation appointment because the radiation equipment wasn't working and I waited for five hours. He didn't believe me and said so. I told him I never swore at any staff member. It fell on deaf ears. He was very impressed with himself. A few days later he called me on a Saturday to apologize. He claimed he had misinformation. That I hadn't missed any radiation appointment or sworn at a staff member. Could we start over? So I told him sure. We'll see where this goes. My radiation treatments depend on this pillar of the radiation community. 6/13/08 I've been through six weeks or five radiation treatments now. Again, my nurses are excellent. I did make it through the course of six treatments. They burned up the inside of my mouth, tongue and throat making it impossible to eat or even drink water for months. I was never told of these effects of treatment or that a feeding tube would have to be inserted in my stomach through my abdomen so I could survive by pouring in water, medications and nutrition. I lost sixty pounds and became extremely weak. It was awful. Gave out My Confidential Information In January of 2009 I received USPS mail from some organization named the Weiss foundation. They were soliciting me for donations to the Davies Cancer Center and wanted me to sign up to make quarterly donations. Soon after that I received an e-mail from the Weiss Foundation, on my private e-mail address, again soliciting me for donations to Shands. The e-mail said I would receive a phone call from them. Not long after the e-mail arrived I got a call on my private-unlisted cell phone from the Weiss Foundation again soliciting quarterly donations. The caller said Shands provided them with my contact information. I let the Weiss Foundation know exactly what I thought of them and their solicitations. Shands sold or gave my private patient information to the Weiss Foundation. I was shocked that Shands would do such a thing and violate patient trust. Background-The treatments I received had some side effects. Chemo made me sick for a long time. Radiation burned the inside of my mouth, throat and my tongue. I couldn't eat or drink making it imperative that I received IV fluids five days per week for many weeks to fight off dehydration. A feeding tube was needed for nutrition. I would become severely dehydrated over weekends when the cancer center's infusion unit was closed. The first thing Monday mornings I would call the infusion unit desperate for treatment. I had to have fluids. Repeatedly I would be told "we have no room for you, call later". Finally, treatment would be delayed to the point that I could barely stagger into the unit for fluid infusion. On one occasion the treatment that I needed so badly was delayed for so long that I passed out in the waiting room. I woke up as an ambulance crew was taking me to the hospital for a ten day stay. The Shands Davis Cancer Center that my life depended on had no room to treat me! The waits to see doctors have been so long that I gave up and went home without being seen by the doctor who couldn't manage his time. It is now May 2010, about 2 years since my surgery, and I am physically addicted to the pain killer dilaudid. Dilaudid has been prescribed for me by a Shands physician for over 1 1/2 years. The 4mg dosage was so heavy I haven't done anything in 1 1/2 years while drugged. I went to a special pain clinic last week. That idiot pain doctor stopped my dilaudid cold and put me on morphine which knocked me out. Then they put me on luratabs which made me sick. By then I was in full physical withdrawal from the dilaudid being stopped cold. The withdrawal was real bad and that is putting it mildly. That was a very stupid thing for the pain doctor to do. They put me back on 2mg dilaudid and the withdrawal symptoms went away. I had no idea that I was addicted to the drug and no one ever warned me about the possibility of addiction. Now I am on half the dose of dilaudid and trying to reduce that so I can get free of dilaudid and get my life back. I don't trust the pain place that put me in withdrawal. What a mess. The pain from the major neck surgery is severe and gets worse as the pain medication is reduced. I'll take the pain to get off the drugs. To Be Continued. It is now 11/5/10 and I have just completed four weeks (5 days per week) of hyperbaric chamber treatments. Twenty treatments in all. The purpose of these high pressure 100% oxygen treatments was to help the operation site in my mouth to heal up. Yes, it took Shand's doctors over two years to realize that my operation was not healing properly and needed special treatments before the exposed jaw bone dies and spreads. Before treatment I expressed my concern to the ENT doctor that examined me and prescribed the chamber treatments that I might be harmed by the treatments. You see, I have had a lot of decompression sickness from decompression cave diving and I have been treated in hyperbaric chambers before with some bad after effects. I had to give up my career as a cave diving instructor and never dive again because of the severe symptoms I was left with after my last chamber treatment for decompression sickness which was at Shands Hospital in the very same chamber. I was left with migraines and dizziness for over two years. I also expressed my concerns to the hyperbaric unit doctor who interviewed me immediately before I began treatments. I also expressed my concerns to the team of chamber operators that run the unit. Both doctors and the chamber operators pretty much ignored my concerns. I was treated like an ignorant patient and not like the highly trained mixed gas diver and gas blender that I am. Yesterday I complained of dizziness inside the chamber to the nurse. He blew me off and said it was because I used lidocane in my mouth. When the treatment was over I had to be helped out of the chamber because I lost my balance. I managed to get dressed and bang into the walls as I left the hyperbaric unit. I had to hang onto the walls in the hall to walk. The chamber crew just watched and let me go. They offered no help. I went to the chamber today to discuss my serious balance problem with the manager. She called in some young woman doctor that did nothing. She didn't even look in my ears. Nothing. They decided I should see the ENT that sent me to the chamber. Well, he is only in on Wednesdays. I asked if I would have to pay for doctors to see me and find out what went wrong with my chamber treatments. They said, yes, I would have to pay for those doctors. I expressed my opinion that the chamber messed me up and the chamber should make it right. They would not do that. So I left. They chamber manager didn't care that my balance was messed up. She did nothing to help. Shand's really has a great hyperbaric unit.
to be continued............................................... |
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