Personal Stories from REAL People

Comedian George Wallace says never accumulate more than 20 days of sick leave. If you go to the hospital, you will die after 20 days anyway. Sad but true in manycases, especially the elderly. My father was bombarded with drug after drug, test after test, Died after being at hospital 20 days. A fiasco.

Started with an undiagnosed chest cough and horrible reaction to Levaquin. Docs appear to be in denial about side effects of most drugs.
My dad suffered Optical and Ulnar nerve damage, loss of weight, loss of appetite, could hardly walk, shoulder pain, depression, insomnia, swelling in ankles and feet, etc. All of these symptoms happened within 2 weeks of taking 10 500 mg pills. How can something like this be approved but the FDA?

After 18 or so days in hospital, doc came in announcing my dad had rare B-Cell Lymphoma and sold treatment with Retuxin. Said possible side effects were fevers and chills. Incredibly, after dad passed away the day after treatment, I looked at the list of side effects and shortness of breath was listed. He already had that from Levaquin. Had tried to warn doc that dad was to weak to undergo this regimen. Never thought team of docs realized the severity of his condition was due to Levaquin. Only thought about tendon tears, I suppose.

Unbelievingly, mom had also taken two courses of Levaquin for undiagnosed cough, ended up in hospital, diagnosed with Anaplastic Thyroid Cancer, passed away within three weeks.

Do not know if there is a cause and effect, but both took Levaquin and ended up with rare cancers, suddenly. Same hospital, drugs galore, etc.

Glenn, Atlanta

Hospitals have become death wards for elderly people. The antibiotic Levaquin put my 84 year old father in the hospital for three weeks and contributed to his passing away. He initially had a dry cough so the internist assumed after an X - Ray that my dad had pneumonia. A bacterial infection was never diagnosed. Most people do not realize that antibiotics are only effective most of the time against bacteria. Giving someone an antibiotic this strong to an elderly person for an undiagnosed infection was irresponsible. Within two weeks after taking this drug, my father suffered the following side effects: Insomnia, loss of appetite and weight loss, dizziness, pain in calves, dry mouth, edema in feet and ankles, depression, numbness in hands due to Ulnar nerve damage, diminished vision and hearing, shortness of breath, general weakness, anxiety, dry eyes, ! unable to walk, and possibly lung inflammation. These side effects are well documented as possible results of severe Fluroquinolone toxicity. Most doctors are unaware of the problems associated with Levaquin. Believe me, I tried to convince them daily at the hospital that my father was suffering from the effects of this drug. Finally, they put a wrist tag on him: Allergic to Levaquin. An example: numbness in hands initially they thought due to Carpel Tunnel; Loss of balance : Need brain scan; Trouble walking, herniated disks in back; Vision dimming, need cataract surgery. My father got weaker every day as they performed blood tests, CT Scan, sonagram, lung tests, and gave him numerous antibiotics, insulin, heparin, flowmax, Gamma Globulin, depression pills, dry mouth antibiotics, oxygen, lasix, steroids, etc. On top of all this, docs eventually said they had biopsy results of lung which showed b-cell Lymphoma. Oncologist seemed to believe that dad's weakness was due to this rather than Levaquin and gave him a strong drug called Retuxin. Oncologist seemed to be totally unaware of Levaquin side effects. Created a host of side effects which he understated initially. Only mentioned chills and fever as side effects. Too much for my dad and he passed away March 19. 2009. AJC had carried an article on my father's trip to Embari, Japan, last year to help dedicate a WWII memorial. He had many good years ahead of him as he was very vibrant and active.

G.V., Georgia

I will never forget my experience in trying to oversee care of my father who was in his 90s in NSG Care Center. I was 65 miles away and visited on weekends...they were giving him Mellaril because they thought he was combative....I had not observed any of this behavior....they were giving him Mellaril which I did not think he needed but thought maybe it would help him to be a little calmer.

I noted that he was spitting it out and notified the person in charge...they started crushing it. I asked if it was the same dosage as I noted some tardive dyskinesia and asked if he was getting the same dosage as before. They assured me he was. I later found out that they had doubled the dosage and that he had lost the ability to swallow. He was in his 90s but I was very upset to learn this.

I believe this contributed to his death. The care of the elderly is sadly lacking. I was sorry that I could not have been closer to more closely supervise his care...I was still working as an RN at the time. This was 20 yrs ago. I don't think things have improved.

I felt that the care givers for the most part were poorly trained and that there needed to be a lot more family involvement in the decisions that were made.

Anonymous RN

As a physician, I've often wondered how an individual can advocate for ONESELF, not just for a patient or loved one. My first introduction to these on-going answers began in medical school, some 35 year ago.

In my third year of medical school, I developed erysipelas (a dangerous streptococcal skin infection), and was admitted to the hospital by my internal medicine resident.

Besides being uncomfortable with a physical examination by my "colleague," I also had to convince him that I was allergic to PCN, and that Erythromycin was always my antibiotic of choice. He didn't believe me and said, "Oh, everybody says that." IV Keflin (there is cross-sensitivity with PCN) was begun.

Very late that evening, I broke out in head to toe hives; the nurses had to awaken him for an order of Benedryl. He did apologize the next day, having learned the first lesson of pediatricians, "always listen to the mother's story." During the same hospitalization, I was placed in an open ward (talk about observing medical care for the indigent), with men on one side of the room and women on the other, divided by a thin curtain that barely obscured inadvertent flashing or extraneous nighttime noise.

My fellow medical student visited, to "practice starting an IV" on me, no kidding, and was so appalled by the conditions. The only way he could get me moved was to write an order in my chart under the guise of having an OK from the attending physician!

My suggestion for any kind of advocacy would include, "ask lots of questions, teach oneself as much about one's condition, show that one is aware and expects competency." A caretaker can pick up a patient's attitude toward him/herself. However, even such close contact is no guarantee even for those of us in or with connections to the medical profession.

Anonymous MD

My story begins in January of 2007. My husband Joe was a vibrant, young man of 46 years of age. He had severe right arm pain lasting for one year. He was given referrals for therapies; physical, occupational, cortisone injections, EEG tests, etc. After seeing the same orthopedic surgeon for some six months and receiving unlimited amounts of Percocet (at the most he received 40 mg.). Well, in September he once again saw the orthopedic surgeon who told him that it was indeed time to consider surgery as the tests had proved inconclusive so he recommended a cervical grafting of C4-C7. At about this time he started having shortness of breath which he attributed to asthma (he had a long medical history of it) so he called his primary care MD who recommended that he receive a course of steroids and they both agreed that the change of seasons may have precipitated it. Well, after completing the course of Prednisone taper, he still felt short of breath so he called once again and he received a second taper and then if I recall correctly a third. He was scheduled for surgery on December 26, 2007.

His surgeon had an emergency so it was moved to January 8, 2008. The first surgery was completed in a nearby medically acclaimed medical center and he was discharged right to a Rehabilitation center locally. He wanted to get right back to work so he stayed for one week and then came home. We (my son and I) were glad to have him home. Gradually his pain became more unbearable so that when he went to have a follow-up with the physician's assistant, we asked him if he could have x-rays and she said she wasn't sure so she was going to ask another orthopedic surgeon and this surgeon told my husband that "No, you had a lot of bone spurs removed so that the pain should be expected and recommended more Percocet." My husband responded "Something isn't right" but we were pooh-poohed along. Some THREE days later, he was taking more and more Percocet and complaining more and more around the clock. On Tuesday morning (he was seen by the PA on Friday) he was taken by ambulance to another local hospital (another hospital where his orthopedic surgeon was actively practicing) where he waited for nine hours to be seen by his doctor. who was finally able to convince him to lie back down on the x-ray table when as was told to me by his physician and my husband " he lost his airway" which led to months and months of misery. He was operated on immediately that evening and his doctor concluded TWO surgeries that day lasting into 3:00 a.m. and was transferred right to ICU. He was in critical care that night and I became a close member of every staff member of the ICU team trying to get them to listen to his "caregiver." I want to tell everyone out there that being a caregiver is an extremely TIRING thankless job made more difficult by the team of ICU members who worked especially hard to not consider my feelings and knowledge of my husband. Some of them were indeed wonderful, caring individuals but some of them had their protocol that they NEVER varied from. For instance; Joe was now having panic attacks regularly. They would get him up in the morning and wean him off of the ventilator and he would do well for approximately 1/2 hour to 3/4 hour and then have a major panic attack so they would simply give him a shot of Ativan and he would sleep for six hours and then the cycle would begin again and again. The most difficult was when they would try to take his tracheostomy out (which they could only do while awake in the Operating Room to see if he could breath). I don't know about anyone out there but I know just by being brought into the O.R. awake I would panic completely. He was given test after test and each new physician would tell me different things (one told me "Your husband doesn't have holes where he should and has holes where he shouldn't alluding to the shape of his respiratory system). After ONE FULL MONTH in ICU it was finally told to me that he would have to be transferred to a Rehabilitation hospital some 1 1/4 hours from home due to insurance problems. My husband had a thriving trucking business for six years which he had just expanded and he had made provisions for the three months he would be out of work prior to his surgery.

This placed me and my son in a very precarious position. This rehab hospital was disgustingly filthy. I have MS and this was not doing my symptoms any good but I love my husband enough to make sure that my son and I went to see him at least every day and that his son graduated from elementary school. I had help from my family when our truck was repossessed and I didn't have anyway to get back and forth to Rehab and they gave me a used 1993 Explorer which got me back and forth. The stories in the Rehab would take pages and pages but suffice it to say he was in Rehab for six months during which time he coded some four or five times; the fifth time he coded he was transferred to a local hospital to the Rehab where it was found that he was NOT diabetic for which he had been receiving insulin the entire six months. He had finally weaned off of the ventilator and was scheduled to be discharged the next day when he called me and spoke to me about his father and then his nurse came in and made him lie down (something that evoked the loss of air which evoked a panic attack) and he coded. I only know this because I was called afterwards at 3:30 in the morning and I was told that he was transferred to this hospital and they wouldn't give me any information from the ER because of the Privacy Act (HUGELY FRUSTRATING IS HE DEAD OR ALIVE?). They started the protocol all over again putting him on a ventilator all over again, putting a feeding tube in, etc. He was flabbergasted to wake up some six days later in ICU again on a ventilator.

He couldn't believe what had happened and was madder than hell. He fought like crazy to wean off of the ventilator (faster than anyone ever had according to the staff) and was told he could be discharged but "Where to?" The answer was "To the Rehabilitation Hospital he had just been transferred out of." Well, I heard my fair tell of horror stories from staff members at this hospital regarding this Rehabilitation center (staff not cleaning tracheostomy tubes daily but rather monthly).

I always knew that insurance companies rule our every move and what they don't doctors do but it was becoming more and more aware to me that our health care system is in a REAL-LIFE RIGHT NOW CRISIS. They told me we had to have three options; I replied "Home, home or home" and after much fighting we agreed that Joe would have every service available at home and he was transferred by ambulance a hot day in July home. We looked so forward to him coming home! He began immediately weaning off of the ventilator and he was transferred home with 18 pills multiple times a day. He couldn't believe he actually made it but as I recall he did say "Was I Hitler in my last life?" Now I understand why he said that. So much more than this I cannot tell as it is too overwhelming to me right now.

Joe passed on July 30, 2008. Ironically, he passed after he called me out to him and I reminded him to raise his legs so they would stop swelling and he went to grab his walker and missed falling ever so gracefully (totally unlike Joe) and fell to the ground. I somehow got the courage to turn him over and he was blue in the face so I immediately called the ambulance and it took 1/2 hour to get to our house. I am in counseling now (thankfully it is covered because of the MS) but my life is forever changed because NO ONE should be forced to live this way. Insurance regulations SUCK.

The insurance company has now placed a lien on our property (as if they don't have enough) for the amount of his care $148,000 so that it is impossible for us to move on. Suing is a thing of the past; I have been told by so many lawyers that you don't sue just one, you sue many entities. Another shocker was that he was transferred back to the hospital where his surgeon was and the ambulance ran out of oxygen ("happens all the time and he was weaning anyway, right").

All of these things go on; I don't know the purpose for us but it is my mission to tell EVERYONE out there to be extremely cautious about everything and to vote AGAINST Devel Patrick's HealthCare Reform in Massachusetts because this is just what precipitated this horror show. God Bless Joe's legacy and for him we will carry on.

Pam F.
Barre, MA

How I needed an advocate when critically ill with pneumonia in 2000 spring both in a major New York hospital (one month) and then rehab at a local nursing home (5 weeks) where thankfully able to get a private room for only 25 extra a day.

My son did call every day as did another friend but otherwise inconsistent visits from so called community people and also from church.

But I needed an advocate most desperately in the hospital. I should have had a private room and a private duty nurse in the beginning so I would not have almost died as illness developed. My son happened to be here on business and extended his stay a few days, but my other son never did come in although I was critical and on a respirator for days.
And had noisy roommates - the worst.

And neglect by nurses who jabbered away with one roommate, a 21 year old woman who had an appendectomy. I was unable to talk because of resiratory effect, and nurses and aides just sailed right by me to talk to my roommate, often in Spanish. As a result bed sores, teeth not brushed for several days at a time, and food could not be eaten because I was too weak to reach tray and then feed myself.

So many worse stories but they are never told in this society and media/entertainment and arts which so shape customs and views - which so dislikes elders and getting older in general. As with the bike plague, once here was a real movement against ageism but it got squelched.

Anonymous patient
New York, NY

I was my mother's advocate when she was in a nursing home for 12 years. I am not patting myself on the back, just making a statement. She stayed alive and happy because of me. She would tell people in front of me that I was one in a million. And when I would complain about something that was happening there, and it was taken care of the next day, she would leave a message for me saying, What are you a miracle daughter, they came and fixed it today. Oh those poor lonely people without advocates. I cannot believe they lasted more than several years without someone watching every move made by aides. Purely coincidental I found that my mother was being given a drug incorrectly. Since she still had her mind, I explained how she should take it and she did remember. I faxed the medical director - heard nothing - I called and he took my call and when we spoke he very quietly and calmly told me that I was correct. Not once did he say that his nurses/aides would be trained to use that drug correctly. How many died because there was no one there for them? The truth is after 12 years of fighting, letters, faxes, phone calls, I lost my health. But she deserved everything and more. I always said, God made an angel, put her on earth and it was my mother. Always there for me, completely unselfish, kind, loving, warm - my best friend. I miss her so much.

B.
New York, NY