My husband, James E. (Jim) Hale, was transplanted with a right lung on Jan. 7, 2000, and set hospital records for a speedy recovery. Everything went exactly perfect and I had him back home here in Skiatook, OK, a mere 6 ½ days after surgery. The next nine months were pure heaven. He had his independence back, his dignity back and his future back. I loved sharing in his delight at simple things, things he could finally enjoy. He had a
wonderful outlook on life and knew he was living a miracle, despite a few trouble spots. There were 3 rejection episodes and a CMV infection during those nine months but nothing slowed him down or dampened his spirit
Then in late Oct/early Nov., he noticed changes in his vision and made an appointment for an eye exam - must be time for new glasses. By the time we went for the check-up the following week, he was noticing decreased field of
vision to the right. The exam came out OK, at which time, Jim stated that the "words just don't jump out at me anymore, I have to concentrate to make them out". We were told to go immediately to our primary care physician,
Dr. Smith. The date was November 9.
Our appointment with Dr. Smith ended up being for Nov. 13, so I called Dr. Paradis in Ok City to let him know something was going on. He said "Have Dr. Smith run a test to make sure there is no infection in the brain - that
is our biggest danger right now".
We went to Dr. Smith on the 13th and Jim told him of his vision problems, and that he was having memory problems as well as pain in his head most of the time. He said he was afraid he'd had a small stroke. I told him what Dr.
Paradis wanted him to do. His response was "Oh, that would be SO rare!" I reminded him of Jim's immune suppression and that he'd just had a CMV infection in September. I said I knew that CMV was a virus that was
known for going to the brain and could even cause death. I said Dr. Paradis is worried... Dr. Smith cut me off with
"I know what Dr. Paradis is worried about! .(long pause) . I'll call him and see what we need to do." Smith ordered some blood work for that day and we left thinking things were in the works to check out Jim's brain.
On Nov. 21, I had to take Jim back to Ok City for his next biopsy and since we had not heard back from Smith regarding any tests, I asked Dr. Paradis what he'd told Smith we needed to do. Turns out Smith never called Dr.
Paradis. Paradis put a call in to Smith's office right then. Later that evening, he called us at home to report that he'd spoken with Smith and told him "You cannot treat this man like any other patient. He is severely immune suppressed. One day can make all the difference in whether he lives or dies." He said he'd told Smith we needed an MRI and a total neurological work-up ASAP.
On Nov. 24th, Jim had the first of many MRI's. Dr. Hooser was administering the test and called me into the back afterward to show me the views on the computer. There were splotches or spots all over Jim's brain, with a cluster
of spots in the left occipital cortex.
He said that cluster accounted for Jim's vision problems. He also said he had no idea what the spots were but that he could tell me for sure - "it was not a stroke!" He said the formal reading of the tests would be done in about 6 hours and the results given to Dr. Smith to report back to us.
On Nov. 27th, we were in Smith's office for the report on the MRI. His words were, "Well Jim, you were right, you've had a stroke!" I couldn't believe my ears, and spoke up with what Dr. Hooser had said. His response was simply - the diagnosis is not made solely on what the MRI shows (?). By this time, Jim was having trouble with his balance and coordination. He was staggering, listing to the right and running into things. He was very anxious and fearful. He had pain in his head all the time. His vision had continued to worsen daily until he had almost no vision to the right out of either eye. I told Smith, "I thought if
you had a stroke, you either got better or you didn't. Jim's vision has gotten worse every day this month and other symptoms have shown up and they are getting worse." He just said that could happen. I was getting no where with Smith and Jim spoke up rather harshly and insisted that we check for an infection in the brain. He said he'd come too far to let something take him
out now and that he knew something terrible was happening and we needed to find out what it was. Smith insisted his
fearfulness was part of the effects of the stroke and offered meds for depression. Jim declined saying he didn't want to be
doped up all the time. Smith said Jim's brain could compensate and recover and that he'd arrange for some outpatient rehab to help. Before leaving, we pressed again for the test to rule out infection. Smith said he was arranging to send us to a neurologist.
On Dec. 8th, we saw Dr. Cardich, a neurologist, for the first time. By this time, Jim was having severe problems getting words out. He knew what he wanted to say but could not always bring the right words up. He was experiencing more and more memory problems and was extremely agitated. Staggering and stumbling when he walked, he could not do the things Dr. Cardich wanted. Dr. Cardich ordered several blood tests, and a series of other tests which would continue for the next 2 weeks+.
On Dec. 23rd, (before the tests Cardich ordered were finished), Jim flipped out, became extremely combative, was
in obvious pain in his head, could not control himself - and we ended up in ER at St. Francis hospital. Jim did not
know me or our son, Clay, and could not respond or follow commands. He was unable to walk or talk. ER did CT's, an MRI, Lumbar puncture and several blood tests. Throughout the day, everyone told me that Jim would be admitted when they finished testing. Late that evening, about 9 p.m., a Dr. Hess arrived (he was the dr. on call for Dr. Smith's practice). He told me that they "did not know what the problem was - but that they were probably NOT going to admit Jim, just observe him for another hour or so and send him home". I strongly protested. I said Jim needs help and you can't just send him home. I also said that I only had one dose of Jim's immune-suppressants with me and that if they admitted him, I would go back to Skiatook and get his meds so they would be there in the am. Hess said "I don't know that we want him having those right now". I said he HAS to have them, he's had a lung transplant - and he gets them everyday at 10 a.m. and at 10 p.m. Hess said, "Well, he may not get them because I haven't ordered them". I told him that Jim would get them at 10 oclock because I would give them to him myself. I then took out Dr. Paradis's phone number and tried to give it to Dr. Hess and asked him to please, please call Dr. Paradis. I said Dr. Paradis is in charge of Jim's health and it's like walking the sharp edge of a knife, you can't go very far off true center or it could be devastating to Jim. He wouldn't take the piece of paper and just said, "I don't think we need to talk to HIM."
I went to the lobby in tears and placed a call to the Ok City Transplant Center to get a message to Dr. Paradis about what was going on. My son's girlfriend, (a respiratory therapist) overhead my conversation and went back to where Clay was with Jim. She asked who in the world is this Dr. Hess??? - not going to admit this man??? - not going to order his immune-suppressants??? Sounds like malpractice to me! According to Clay, Dr. Hess was standing a few feet away. I had
no idea this had taken place until later, but when I returned, Dr. Hess came to me and said Jim was being admitted up to 6th floor - Neurology, .. And that I could give him his meds at 10 o'clock.
When we had Jim settled into his room and sleeping, I left after 1 a.m. and drove all the way back to Skiatook to pick up Jim's meds so that I would have them there at the hospital. My 10 year old grand-daughter, Amanda, was with me. She had been staying with us when we ended up in ER - and had been there in the waiting room all day. She would in fact, remain in the room with us, for the next 6 days and nights.
Jim was combative at times, pulling on his IV's, kicking at his catheter, and constantly trying to get out of bed. The hospital staff put him in a Posey to restrain his movement and keep him from hurting himself. They then added 4-point restraints (meaning both wrists and both legs were tied down). He remained in these for several days.
Chemo-Care signs went up in the room and special packages of gowns and special packaged gloves were brought in. The staff did not use the regular gloves in boxes - they used the special ones. I told them Jim was not on Chemo. They responded that some of his immune-suppressants had the same ingredients and that this was common (although when we were admitted again the following month, nothing was said about Chemo-Care and no special gowns or gloves were brought in, even though his immune-suppressants were the same).
My 10 yr. old grand-daughter, Amanda, stayed in the room with us for 6 days, helping take care of Grampa. The hospital staff was very nice to her and seemed impressed by her knowledge of his meds and the fact that she gave him his insulin shots at home. Whenever he needed a shot in the hospital, the nurse would say, "Amanda, do you want to give this shot to your grandpa?" And she would! They also let her flush his IV's. I knew it was unusual for them to allow Amanda to give him shots but I was too upset at the time to realize what a 'no-no'it was. Looking back, there were many signs of what was going on but I completely missed them.
The 2nd day in that room, they disconnected the call button saying it was malfunctioning and if I needed anything, to send Amanda down the hall to get someone. For the remainder of our stay in that room - to Dec. 31, we had no call button. If Jim kicked or moved enough to dislodge his catheter a bit - and cause bleeding. They brought me a tub and wash clothes so I could clean him up. It is plain to me now that I can look at things more objectively - they did not want to touch Jim and took every precaution to protect themselves when they did touch him. They did not advise me, my son Clay, or my granddaughter Amanda, that we needed to protect ourselves from Jim's blood or body fluids.
Mad Cow came up for the first time within a few days of being admitted. There was a TV program on it and I watched it right there in that room. Everything I saw on TV, I was seeing with Jim. I asked Dr. Cardich about it the next morning. He told me it was a 'possibility' - and that it was completely untreatable, a virtual death sentence. He said that we are seeing more and more of it here. They have a lot of it in Florida. (The human form of mad cow is called Creutzfeld-Jacob Disease or CJD - and it takes about 250-300 lives per year here in the States. Of course, that only counts the cases that are actually confirmed by brain biopsy or autopsy).
Infectious Diseases was called in and I met Dr. Grossrhodes first, followed by Dr. Roland the following day. I spoke with both asking for a test to rule out infection in the brain. I advised both that Jim had a CMV infection in Sept. and asked that they please speak with Dr. Paradis in Ok City and coordinate with him. (I also asked about Mad Cow and their response was the same as everyone else's "You understand, it's not treatable.") After repeatedly asking if they had ruled out an infection in the brain, Dr. Grossrhodes finally asked me what med was used when Jim had the CMV infection in Sept. I told him Gancyclovere. He said he would put Jim on IV"s of Gancyclovere or Acyclovere every 12 hours just in case there IS an infection that can be treated - if it would make ME feel any better.
Note how Jim responded to the IV's!!!
Jim improved dramatically on the Gancyclovere/Acyclovere. Within 2 days, he had recovered his senses - was out of the 4-pt restraints, out of the posey, and out of the catheter. He knew me and could try to help feed himself and converse with his limited vocabulary. Staff came from Rehab and with their help, Jim began walking the halls on the 6th floor, getting in and out of bed, sitting in a chair, etc. He would hold my hand and smile at me. He was cognizant but frustrated that he couldn't get the words out. I was thrilled - I had him back!
Dr. Grossrhodes discontinued the IV's after the 2 days, saying the tests showed no infection in the brain. However, when I enthusiastically said I had to call Paradis and let him know - he responded with "Oh no, don't call Dr. Paradis. That just means there is no bacterial infection in Jim's brain. It doesn't mean there isn't a viral infection!" I was dumb-struck! I said CMV IS A VIRUS!!! WE NEED A TEST TO RULE OUT A VIRUS IN HIS BRAIN!!!
He said you understand - it wouldn't be treatable. I suddenly caught it!!! - ANY viral infection in the brain is NOT Treatable. (I had already been told by another dr. that St. Francis does NOT test for diseases that are untreatable. They rule out treatable diseases, period!). Dr. Grossrhodes began talking about how improved Jim was and that he would be moved to Rehab in a day or so and start getting ready to go home. He indicated we were out of the woods and on our way.
Dec. 31 was the last day Dr. Pedro Cardich could be on our case. An insurance change caused us to lose Dr. Cardich and we got a new neurologist, a Dr. Webb. I talked with him re: infection in the brain and the possibility of Mad Cow (he said yes, we have a couple of cases a year of it right here at St. Francis).
On Dec. 31, we were transferred to the 2nd floor Rehab Dept. Jim was able to shower by himself, shave himself, feed himself and walk without assistance even though he wasn't too steady. He was cognizant but 'affected' and unable to converse beyond simple automatic things. Four days later, they said Jim could easily do everything they wanted him to do and any further therapy could be done at home. On Jan. 4, we were discharged home with a plan for outpatient Rehab to continue for several months. A few days after arriving back home, I noticed Jim began to lose ground - instead of getting better, he was getting worse.
On Jan. 9th, I drove Jim to OK City to see Dr. Paradis (we had no appt.) but I asked Jim if he wanted to go and he was adamant with head shakes andfacial expressions. I had to take him inside in a wheelchair as he was getting too unsteady to walk that far. Dr. Paradis was shocked when he saw Jim. He told me "Have them rule out CJD! I am seeing it right here, right now!" I told him it had been discussed as a possibility and that I was told it was not treatable. He said if mad cow was taking him, that Jim had a right to know. He noted in his record for that day, observing "evidence of marked psychomotor retardation and expressive aphasia". He told me a brain biopsy was the best way to test for CJD and that Jim could handle it.
We immediately called for appt. with Dr. Smith (PCP - you have to go thru them to get anywhere else), and the appt. was made for the earliest time which was the next week. The morning of the 17th, our appt. day, we rec'd a call from Dr. Smith's office saying he had been called out of town and we'd have to reschedule for the following week. I said NO WAY - we are coming today and we'll see who ever is there! My son took off work and helped me get Jim there in a wheelchair - he no longer could even stand on his own. He was drifting in and out of awareness.
We saw Dr. Pue - he came into the exam room with Jim's chart under his arm, stepped inside and shut the door, then leaned back against the wall by the door with his arms crossed in front of his body and said, "Well, what do you want from me!?" I told him I wanted some HELP, I was watching Jim deterioate before my very eyes and nobody seemed to be trying to help him. I had been asking for a test to see if there was a viral infection in the brain and still did not have it. He said "You understand, that wouldn't be treatable. ..If he were my patient, I'd put him on Hospice." I also told him what Dr. Paradis said about CJD and I asked for a brain biopsy. He said "If it isn't treatable, what difference does it make what is taking him?" He was a cold fish. Did I really want to put Jim thru such a procedure after he's been thru so much and for what - just so I"LL know. He agreed to arrange for Home Health to assist me. I left angry and confused.
On Jan. 19, Jim had his second major episode where he flipped out and we ended up in ER again - admitted to 6th floor again. Same tests - MRI's, CT's, Lumbar Punctures, etc. Was constantly told they did not know for sure what they were up against - but for some reason - it was not treatable!
This was only Jim's 2nd hospitalization due to 'whatever' was causing his problems. However, the doctors referred to it as one of "multiple hospitalizations" in their reports. Their conversation with me was that Jim had some kind of central nervous system disease and could not be treated. I could expect to continue to see him go downhill and die. During this hospitalization, Jim ate almost no food - only sips of water, juice, milk and occasionally a sip or two of Insure, or a bite of yogurt.
Dr. Grossrhodes told me on 1/23, that since I thought so highly of this Dr. Paradis in Ok City, they had decided to release Jim to Ok City - and if OK City wanted to do a brain biopsy, they could do a brain biopsy, but St. Francis wouldn't do it. That was, IF I wanted to put Jim thru something like that in his condition. I declined.
On Jan 24th, we were sent home for Jim to die. Dr. Pue sent us on Home Health as I refused to stop giving Jim his immune suppressants. Dr. Pue said I was "not ready" and could switch to Hospice when I was ready. Then a couple of days later, Dr. Smith called - said "the test was back from the CDC and that it had been confirmed. Jim had mad cow. They even tested it twice to make sure. He was sorry. Of course, now Mrs. Hale, You realize that you can't tell anyone what he has. It could destroy whole industires in this country". Smith called Paradis the same day (the one and only time he ever called Paradis
about anything) and told him Jim had mad cow. He further said that Jim was his 3rd mad cow patient from right there at 101st
& Memorial, where his office is located. Paradis called several agencies and the Organ Network to have recipients of other organs from our donor checked out in case it came from him.
I switched Jim to Hospice that very day and had a nurse come out to put in a cathether and administer enough morphine that he had no awareness and no pain. I signed a DNR and got out a copy of Jim's Living Will showing his signature and his choices. From that time on, he had nothing by mouth, no food and no water. The only thing he received was his immune suppressants crushed and put into capsules and given as suppositories, and his morphine patches and pills that could dissolve in his cheek as long as that was possible. Hospice had to get special instructions as they'd never had a mad cow patient.
THEN on Feb. 1st, I received a call from Infectious Diseases. Dr. Roland asked "Why are you telling people your husband has mad cow?" I said Dr. Smith said it was confirmed by the CDC. Dr. Roland said "OH NO - HE MADE A MISTAKE in reading the CDC report. Your husband does not have mad cow - he has something called PML or Progressive Multifocal Leuko-encephalopathy, and there's good news!!! It is treatable!!! There are several treatments, any one of which can greatly benefit your husband. Dr. Grossrhodes is working on a treatman plan for him right now! And - you don't have to worry about being infected - you, your little grand-daughter, or your son, - because PML is not contagious. It's not carried in the blood like mad cow".......... I said, my husband is blind in both eyes, unable to move or speak, locked in a stiff and comatose condition, unable to swallow and his kidneys are shutting down - are you saying we can help him??? His answer - "Oh no, he won't get any better from the time we start treatment but he certainly won't get any worse!"
My world, which had already fallen apart, crumbled into tiny pieces at that moment. Jim had received no treatment except the 2 days of IV's - I had continually been told a viral infection in the brain - was not treatable. They had finally tested some spinal fluid for a virus on January 23rd - the day before they sent us home for Jim to die - the test Paradis has asked for in early Nov. It took days for the report to come back.
I immediately called Dr. Paradis in Ok City and told him of the mistake. He said that the cat was out of the bag. I asked what he meant and if he thought it was a cover up to convince me Jim didn't have mad cow and keep me quiet. He said Either that or they just handed you Dr. Smith on a platter. If if was PML, then Jim didn't have to die - we would lower his immune-suppressants and put him on a drug called Cidofovere. Dr. Paradis told me that he knew I had to concentrate on the things before me at the moment but that later, if I decided to DO something, he would be with me.
Jim died on Feb. 5th at 1:00 p.m., while the Hospice nurse and a Hospice Social Worker were talking to me. They were advising that, when I could think clearly and had gotten through the things that were facing me immediately (with a funeral and all) that I should get all of Jim's medical records, including his x-rays and MRI's, etc. and consult an attorney. They even wrote down the name of an attorney for me and stated they would be willing to be called as witnesses.
The Hospice nurse told me they had been in completely uncharted water and had no guidelines. She confirmed what a night nurse had told me the night before, - they had increased Jim's morphine and given him amounts - just to keep him stable - much higher than they had ever had to give another hospice patient. Their instructions remained to treat him as a mad cow patient right up to the day he died. It never changed.
The day after Jim died, Dr. Smith called to give me his condolences and repeated his earlier warning. "Now you know - you can't tell anyone what he died of", etc. I said Dr. Smith - Did infectious diseases not talk to you?????? He asked about what and I relayed their message that he had made a mistake in interpreting the CDC report and that Jim did not have mad cow but rather PML. He said - "No I'll have to talk to them, but PML isn't treatable either". I said - THEY said it was! His response was just, oh - he didn't realize it was treatable.
Thet day after Jim's funeral, Dr. Smith called to tell me that he had in fact made a mistake in reading the CDC report and that Jim did not have mad cow - he had PML.And, ..."was there anything else he could do for me?"
NOTE: On August 14, 2001, I ran into Dr. Pedro Cardich at a restaurant. (This is the Dr. Cardich who was removed from our case the end of Dec. due to an insurance change and replaced by a Dr. Webb) We recognized each other about the same time and stopped to talk. I told him what had been put on Jim's Death Certificate and he was stunned. I also told him I wasn't sure what took Jim. He said "I worked for years with Aids patients - and I have seen a lot of PML. If it was PML, I would have KNOWN it! I did not see PML!"
Believe it or not - I have just 'hit the high spots' of all that transpired. I have thought I was going crazy. If I had known what was going on, I would have done SOMETHING to get that test run (before the Jan. 23rd date - when they finally ran it).
I am devastated at losing Jim - and have the guilt of knowing I did not protect him when he was completely unable to protect himself. Jim was a brilliant man (had a degree in Physics). You cannot imagine how hard it was to see his cognitive abilities wither.
I was hesitant to contact any of the SW family for a long while. I never even responded to the emails or cards as I didn't want to strike fear in their hearts with what had happened here. But, I now feel that I am in a position to give a little advice on certain points - and I don't want any of you to go thru what we have endured here.
#1 Understand that a Primary Care Physician does NOT know one thing about how to take care of a TX patient. If yours refuses to coordinate with your Tx doctor, change PCP's. Or better yet, talk to them before there's a problem and let them know that you consider your Tx doctor as the person in charge of your health and you want every tiny detail coordinated thru them.
#2 If your PCP utters one word that indicates his 'ego' will not allow him to defer to some other doctor (perhaps in another town) - get it straight with him or change PCP's.
#3 Understand that insurance companies give bonuses to PCP's who help them control costs - just like big companies bonus employees who save them money.
#4 Your PCP is capable when you are a well person, but he is totally lost if you have a serious health concern.
#5 If you are in the hospital, a member of your PCP's network will see you while you are there - do not expect to see or hear from your own PCP until it becomes his turn to do duty at the hospital. No history, no knowledge other than a quick scan of what is in your chart (how fast can YOU read) and he's off - in charge of your health - your life or your death.
#6 Some hospitals do not test for something they consider untreatable (I was told at St. Francis, any viral infection of the brain would be untreatable. Only to find that even if Jim's correct diagnosis was PML, - it is a virus and it is treatable!) Being treatable is NOT the same thing as being cureable. His life could have been prolonged while he had his abilities and his mind. He could have been symptom-free for years before the disease would have taken him.
#7 I'll never know for sure whether Jim went with mad cow or PML - I chose no autopsy. It would not have helped him at that late date. However, YOU need to know that mad cow is here in this country and you can find out a lot by surfing the web for either 'mad cow' or CJD Creutzfeld-Jacob Disease. Look for The Many Faces of CJD - there are tons of stories that mirror what happened to us. Keep in mind that any message or posting that is put out by a government agency or the news media, etc. - will say that mad cow is NOT here in the US.
Follow links - go where the truth is. I can tell you from personal experience that there is a support network in every State for families who have lost a loved one to this horrible disease. Even a representative of the CDC has stated on record that most cases are diagnosed as Alheizmers (sp?) - when a person is physically healthy (not immune suppressed), it takes much longer for the disease to kill him - although he is 'dead' long before his body dies.
Why? Because to diagnosis every case would mean to destroy the labs and equipment used each time (the prion can't be killed).
If you want a list of sites to visit - email me.
#8 CJD is an unwrapped protein called a prion. It is not a virus and not a bacteria. It is not really alive thus, it is more of a zombie...and it cannot be killed by usual methods of sterilization or burning it. It is the same prion disease that cows have. In cows, it is BSE or Bovine Spongiform Encephalopathy. In pigs and sheep, it is called Scrappie. In mink, it is called TSE or Transmissable Spongiform Encephalopathy. In deer and elk, it is called CWD or Chronic Wasting Disease. In fish, it is called Whirling Disease. For the human form of this disease, they call it CJD in people over 55, nvCJD or new varient CJD in people below 55.
#9 PML is an infection caused by the JC virus. Most everyone has the JC virus in their kidneys. When a person becomes severely immune suppressed after a transplant or after massive chemotheraphy, or immune deficient as in AIDS patients, the virus travels straight to the brain and begins to destroy the protective coating on the nerves, which causes everything to short-circuit. It is a demyelinating disease - and in order to live, a person has to be diagnosed ASAP and aggressive treatment started as early as possible.
NOTE: On 8/8/01, 6 months after Jim died, I ran into Dr. Pedro Cardich, (neurologist who was knocked off our case 12/31 due to insurance change). I told him what had been put on Jim's Death Certificate and that I was not sure what took him. Dr. Cardich said that he had worked a long time with AIDS patients in Fla. & had seen a lot of PML. If it was PML, he would have known! He said he did not see PML.
Lynn Hale <firstname.lastname@example.org>
Last edited on 3-7-2002