Before Antiphospholipid Syndrome - better times for Stella and Kenneth Gunther, of Edgewater, Florida.
Antiphospholipid Syndrome (APS)
(Also called Catastrophic Antiphospholipid Syndrome)
Stella Never Had A Chance
This is a sad and most horrifying story that must be told. It surrounds the treatment and death of my wife, Stella Gunther, at Halifax Medical Center for Catastrophic Antiphospholipid Syndrome. The doctors responsible for her treatment were Dr. Vinod B. Patel, a nephrologist, Dr. Ralph Zwolinski, a neurologist, and Dr. Michael Kohen, a rheumatologist. After being in the courts for a few years I can now tell my story.
Stella was diagnosed with the Antiphospholipid Syndrome (APS) in September of 1994. This is a disorder of the immune system that is characterized by excessive clotting of the blood. The lab diagnosis is APTT, Lupus Anticoagulant (LAC) and Anticardiolipin (ACL). For the next six months, Stellas tests for LAC and ACL became more out of range with every test. There was never any attempt at any time during these six months to bring these test levels back in normal therapeutic range. Clinical features of this syndrome are strokes, vision problems, TIAs, seizures, pleural effusion, chorea, CNS problems, coma and death. Stella presented with all of these symptoms and she died on January 23, 1995. Yes, I am still very angry and hurting.
On June 13, 1994 at Halifax Medical Center, the ER physician notified Dr. Patel about Stellas high APTT. Another test on June 25th was higher. Stella was not on any blood thinners at this time or ever, even at the time of her death. Dr. Patel had seven months to control her APTT and according to my copies of hospital records, he never did. During the next several weeks, Stella began to do very poorly. She had blurred vision and lost the ability to even write. On August 5th, she was admitted to Halifax Medical Center with seizures.
Dr. Patel told me in ICU that Stella was having mini strokes. I find no evidence that Dr. Patel ordered any blood coagulation test. Why not? The CT scan on August 8th showed the right side consistent with focal of infarction. No hemorrhage. The MRI findings on August 16th were diffuse ischemic change to moderate severity. On the Progress Report of August 18th, Dr. Zwolinski states the MRI shows only atrophy.
On a Progress Report, Dr. Patel states Stella has a flare up of a lupus like condition and has Antiphospholipid Syndrome (APS). She was in a coma like condition at this time. Dr. Patel never told me Stella had APS. I found this out after I studied the hospital records. Seems as though Stella needed anticoagulation. This can be challenging but there are ways to do this.
She was given 1gm of Solu-medrol a day and in a few days she did wake up. It was unbelievable. Stella was like she used to be, bright eyed and smiling and talking like she used to. Dr. Kohen said to me in ICU that she was having a lupus flare. Dr. Kohen, in just 8 days, reduced her prednisone down to 10mg a day. So on August 13th she was on 10mg a day. A reduction too soon to get control of her immune system. She was then transferred to a regular room.
After a few days in this regular room, Stella became very sick once again. The most noticeable thing was her mental change again. She had trouble with seeing and had spasmodic movements, mainly in her arm. After seeing her in this condition I asked Dr. Patel if Stella is getting enough prednisone and his response was, She is getting tons and tons of this and I dont know what else to do. He wasnt telling me the truth and I knew it. She was only on 10mg a day. I then said I want her back in ICU until someone can tell me what is wrong with her. So, on August 18th, she was back in ICU.
Question: Why werent a spinal tap and a blood work up for the APS done at this time Dr. Kohen said she may need anticoagulation based on prednisone response. Its amazing for a doctor to say this and yet not order any blood work. Stella was in the hospital for three more weeks with bouts of confusion and visual problems. Stella did have the ACL test. Dr. Kohen notes that Stellas test for ACL is moderately elevated and at this level I wonder if he knew this is related to seizures and neurological problems if left untreated? Records show Dr. Kohen did nothing to eliminate the ACL antibody. Even when these tests became much worse, Dr. Kohen never made any attempt to treat Stella for this APS. Is it any wonder Stella was again having focal seizures on August 28th? Yet on her discharge date, September 4th, Dr. Patel states Cardiolipin IgG was normal at 43.1, IgM 38.3. This was not true.
Stella was finally discharged on September 4, 1994. Not long after discharge Stella developed CNS once again, mainly being confused and with vision problems. While in the dialysis chair, Stella would cry and beg someone to take her out of there and at times she would take her hand and try to pull her hair out. At times she would just stare and not notice me. These symptoms would come and go. This was so sad. The most disturbing part was that Dr. Patel would see her in this condition. Stella was still on 10mg of prednisone per day.
Stella was admitted again in October, November and December of 1994 for many problems, mainly seizures, confusion and chorea. Always on 10mg of prednisone a day. An October Subjective states she had a stroke recently. On admission date December 4, 1994, we see what the APS is doing to my wife. Stella had a TIA on this admission, I was there. Dr. Zwolinski noted on December 12th that she had a generalized seizure last Sunday. At that time her Dilantin level was 13, which is normal.
Dr. Zwolinski refused to see Stella at his office one day, even though we had an appointment. The secretary said he will not see Stella. After trying twice, we left. I told the secretary they would hear from us. As we were getting into the car the secretary came running over to us and said, Please come back, he will see you. So he did see us. My wife was a wonderful human being only asking for help. I can still see the look on my wifes face during this time in his office. This took place on December 20th in the afternoon.
Her next and final admission was December 27, 1994. Stella had not been doing very well for several days. Her mental status decreased. The night of the 27th we were sitting and watching TV with the Christmas tree all trimmed. She started to have trouble completing her sentences. She said she knows what she wants to say but cant say it.
Stella was having problems with her eyes, she said, The tree is really pretty but Im having blurred vision and there's spots in my eyes. So I took her to Halifax that night and they admitted her. The next day Stella went into a coma with a stiff neck and brudzinski sign positive. Since the APS was never treated we are now seeing the development of THE CATASTROPHIC ANTIPHOSPHOLIPID SYNDROME, a rare form of inflammation of the nervous tissue of the brain, called transverse myelitis. A spinal tap was done and the CSF showed many inflammatory cells with high protein, low sugar, pleocytosis and no bacteria of any type were ever found. Dr. Kohens impression was the possibility of her active Vasculitis Lupus. On this last admission I find no evidence Stella got an MRI, only a CT Scan without contrast.
On the 4th day of her coma, December 29th, all these tests were back showing high numbers for ACL, APTT and LAC. MAKE NO MISTAKE ABOUT THIS; STELLA NEEDED EXTREMELY HIGH DOSES OF STEROIDS IMMEDIATELY. This is the standard of care in cases like this. She was getting antibiotics at this time. This was an emergency situation and heroic measures should have been taken. The antibiotics were onboard so steroids could have been given at the same time. Dr. Kohen never made any attempt at any time to treat Stella for APS or possible SLE. In my opinion, I dont believe Dr. Kohen was qualified to treat my wife. I make no apology for making this statement.
From her first admittance to this hospital back in August, and all the subsequent admissions, Stella always had a low-grade unexplained fever. Stella did have a couple of infections but with large doses of antibiotics she always responded very well to these. I have all of these test results; I know what I am talking about. But the fevers continued. Even while in the coma with all the antibiotics she was getting, Stella continued to have spiking fevers. I developed graphic charts of these temperatures and also for ACL, LAC and APTT. Yes, it was her immune system and Stella needed high doses of steroids, not three weeks from now, but immediately in order to have any chance of survival. And no, Stella did not pass away because of any infection.
Then the unspeakable happened.
Dr. Kohen left town for five days and failed to treat Stella as she lay in a coma in the ICU. Interesting. I checked his billing record dates. You see, another doctor told me this. Remember, this was New Years week. Where did he go, I wonder? All the tests for APS were back on December 29th. He was still there on December 30th. December 31st through January 5th there were no billing statements. So instead of any heroic measures to treat this APS, Dr. Kohen evidently had more important things to do.
Truly, Stella never had a chance.
Dr. Ejaz (he worked with Dr. Patel) said to me he was very angry with Dr. Kohen for leaving Stella and leaving no one to cover for him. Dr. Ejaz said he should never be telling me this. He said this to me after I discussed the problems I was having with Dr. Zwolinski. Dr. Ejaz said he was looking for Dr. Kohen for some direction to go with Stella.
So on the January 10, 1995 Progress Report, Dr. Kohen notes the LAC of 408 and ACL of 55.8 and still no heroic measures were taken to eliminate the APS antibody. On January 18th, I called Dr. Kohens office and asked him to meet me in Stellas room that evening. I said to him that Stella has been in a coma for three weeks now and impressed upon him that I think lupus put her in this condition. He said, Okay, I will start treating her for lupus. This is why, and I think the only reason, Stella ever received high dose steroids. I made notes that Stella did receive high dose Solu-medrol before I left the room that night. Stellas mother was in the room when I asked Kohen to treat her for lupus.
After I got Dr. Kohen to give her high doses of Solu-medrol the nights of January 18th and 19th, I saw a difference in Stella. For the first time in three weeks of being in a coma, Stella heard my voice. As I had been doing for three weeks, I leaned over and said to Stella I was praying for her. She began to cry with heavy tears coming from her eyes. I was startled to see this. I knew the high dose steroids were working. Stella needed this three weeks ago but it was too late for a complete recovery.
On the morning of January 19th, I asked Dr. Zwolinski about any infection they may have found. His exact response was, Hell, they didnt find much of anything. Stella had an EEG done a few days before and I asked Dr. Zwolinski about the results. His response was, There is a problem with one side of the brain but I dont know what it could be. Also, as of day six of her coma, no neurologist had seen Stella for five consecutive days.
Then the next morning, January 20th, something strange happened.
As I was coming down the hall to Stellas room, Dr. Ejaz stopped me and wanted to talk to me. He said Stella has an infection all through her body and thats what is wrong with Stella. He said, Dont forget this. He said this twice to me. He then said, You must remove her from this hospital. The next morning, January 21st, he said the same thing to me only he gave me two more days to find a place for her. Stella died on January 23, 1995.
Was this a cover up? Did Drs. Kohen, Patel and Zwolinski tell Dr. Ejaz to tell me this? Were they afraid I was going to bring an outside doctor in to look at Stella? It was obvious to me that Dr. Ejaz was not telling me the truth. The infectious disease expert, Dr. E. Dimayuga told me personally she could find no infection that put Stella in this coma.
Within a few months of losing Stella, I got all the hospital records and started to study. It wasnt too long before I realized what Stella had and the seriousness of not treating the Antiphospholipid Syndrome, especially when the clinical symptoms are present. Back on February 26, 1993, Stella was admitted to this hospital for APS. Even with low platelets at that time, she was put on Coumadin and 40mg of Prednisone per day by the consulting physician, Gregory R. Favis, M.D. Stella did very well and was later discharged.
To confirm my suspicion, I called the NIH in Washington, D.C., and they gave me some names of rheumatologists who would tell me what happened to Stella. The doctor I went to see was in charge of the medical department of a large college. After looking at Stellas medical records, this is what he said to me, Ken, do you know what schools her doctors went to? He then said, Are they certified? And then, Are you sure this rheumatologist is certified? He told me they knew she had this but never even attempted to treat her. He looked at me and this is what he said, This Antiphospholipid Syndrome is what most likely killed your wife.
For many months now, I have been researching Antiphospholipid Syndrome. I have read how it is diagnosed, the symptoms, the proper treatment and the tragedy of not treating it. What is most tragic is having the APS test done, and then not giving the medication that probably could have saved Stellas life.
I have done my homework. I have thoroughly researched the medical journals, conversed with medical authorities and have come to the conclusion that all of the records will substantiate that my wife, Stella, would most likely be alive today if her condition had been properly treated with appropriate medication. Unfortunately, neglect and lack of care took her away from a life she loved and people that loved her.
Amazing! Yes, it is amazing that the doctors at Halifax Medical Center attending Stella must have ignored or neglected to not only professionally treat her, but failed to convey to me, her husband, what was wrong. Only by much time, effort and research was I able to see what test so clearly should have alerted doctors to the kind of medical treatment Stella needed to survive her illness.
I went so far as to present her test on ACL, LAC and APTT to other medical doctors at another hospital. Both doctors said she most likely passed away because of thrombosis. I was asked by both doctors where Stellas doctors went to school and was the rheumatologist certified. Both said she should have been treated for thrombosis with this APS. I have a statement by a rheumatologist at Harvard Medical School saying the APS caused her neurological deterioration.
No other patient should ever go through the suffering that my wife did. At least now I know why Stella couldnt get better. This story is not a personal attack on any of these doctors as they were always nice to me and I have no hatred toward them. Its a story about them as a physician treating my wife.
I can be contacted at email@example.com
A complicated case? Not at all.