Chapter 20: Surgery is a success at Mayo

I thought about those who weren’t as lucky to survive, with their families never getting the records, believing that their loved one just had complications during their procedures.  I wanted to encourage other patients to get their records, to be more assertive, and to ask questions.  Everyone was talking about health care reform.  My question was, why create another system before changing the present one, where the patient has no voice or recourse for what they have been put through?  When the Dean Administration gave me no alternative, or even personal attention to my complaint, I decided to see the counselor that was recommended, even though I felt that she would be helpless to answer these questions.  

The counselor I saw was very patient.  She listened to my story for more than an hour.  Her response was, “Colleen, you understand what has happened to you.  I don’t believe you need a diagnosis of emotional instability to add to your medical history.  My suggestion is that you take your records and write a complete history of what has happened to you.”  I was relieved that this doctor was not looking for another patient.  She never even charged me for the 1. 5 hours, knowing she would have to diagnose me as having a mental health issue if she did.  She assured me that if I ever wanted to return, she would be there for me, and she wanted me to let her know how my life proceeded.  I left the counselor feeling relieved, yet troubled and overwhelmed by the thought of writing.  I had written an outline of my medical history before, but this was different because I would be writing about my feelings and experiences.  I pondered it for a few months and her suggestion gnawed at me until I knew I needed to try putting my story together. 

This was a very emotional task for me.  I also felt intimidated because I was not an English major, and additionally, I wondered if these things might not have happened to me if I had been more educated in the first place.  However, I was determined to proceed and hopefully have my family understand all the events that took so much of their time and energy.  Maybe it would even help someone else from going through a similar experience.  It took me months, a little at a time, page by page, to read my records again, taking notes and trying to include my feelings.  When I finished, I had 20 or more pages written, but I knew I needed help to better express my story.  I couldn’t afford a professional writer, but the senior center had a writing assistance program.  I started, but I only went a few times.  It was primarily for funny or very short stories.  Mine was just too long and complicated to even bring up in these sessions.   I then learned about the writing assistance at one of the public libraries.  This was the turning point in my crusade and one of the best experiences of my life.  The writing assistance was better than any kind of counseling I could have received.  The empathy, interest, and concern these writing assistants had made all of what I had been through worth getting written.  Time was limited each week, sometimes only a half hour, but I never missed a session.  I have them to thank for not just their writing but for their compassion, which gave me back my self-esteem.  I want to thank my friend Kay Hiller, Ileana Rodriguez, and those people who helped with the writing of this history: A.B. Orlik, Mark Estante, Rebecca Lorimer, Beth Godbee, Michael Dimmick, Kim Moreland, Annie Massa-MacLeod, and Rob McAlear. 

As for my physical health, the risks of the surgeries I had were serious, and I was lucky that I was healthy enough to survive.   Almost a year after my surgery at the Mayo Clinic, I was delighted that I could walk any distance without the left leg pain I had experienced for so many years, but I knew that I would never have had that drastic surgery if my condition would have been dealt with 10 years earlier.  Now, it has been 3 years since I had my surgery, and I still have not had any pain in the calf of my left leg.  I will continue to work with Mayo Clinic if other complications arise, particularly related to scar tissue and nerve damage from surgeries.  I have reminders of other surgeries and other pain, but not in the calf – and unlike the calf, those things don’t stop me from walking.  Despite those other daily pains, nerve damage, and scar tissue, I can go to concerts, do things with friends, and most importantly, I can dance again. 

If you should read Dr. Gloviczki’s report to my primary doctor after my surgery, you will see how thoroughly they reviewed my past history.  Every time I see Dr. Gloviczki, I am so filled with gratitude that I want to hug him.  The care I received at the Mayo Clinic is the type of care that every patient should receive, without weeks, months, and years of waiting.  People linger in medical systems that do not offer them solutions for far too long – and sometimes it is too late. 

I hope that this story enlightens not only my family, but other patients in the future.  It is easy for a patient to give up when they feel like no one is listening.  When we are violated, we feel powerless to do anything and we often accept it, an acquiescence that enables further abuse.  We need to be more aware of what happens to us in the medical system and be willing to share our stories.  There are many good doctors out there, and hopefully they will listen to our stories.  Maybe there will be doctors with a little bit of Dr. Timmerman inside of them hears our stories, and they will try to change or make a difference in the system. 

Chapter 19: Survived the Surgery

      I was surprised when I woke up after the surgery.  Knowing I had survived the operation, my family was smiling with tears of joy.  I knew I had a chance.  The whole panel of doctors visited me in the hospital and the room was full.  I felt like I was on the television series, House, because I was getting so much attention, and all of the doctors were communicating with each other, all knowledgeable about my case.  I learned that even though Dr. Gloviczki had trouble getting the artery inserted on my left side due to the mess left behind by my second back surgery, he did succeed.  I was lucky he succeeded, but if it hadn’t been for repeated misdiagnoses, this drastic surgery would not have been necessary.
      When I returned home on 5/27/2007, I had a lot of healing to do before I would be able to walk enough to see if the surgery had made a difference.  The weeks went by and I became stronger.  The patient advocates at the UW visited me several times during these weeks.  There had been no response from the Dean Administration regarding my written complaint in May of 2006.  The advocacy staff at the Center for Patient Partnerships felt that my original complaint to the Dean Administration was too passive and should be resubmitted.  They filled out another complaint form for me and they submitted it with my approval.  The complaint requested that Dean send pertinent meeting minutes and outcomes.  After two weeks, there was no response.  The advocacy staff called the Dean Administration to inquire, and they were told the letter must have been lost.  I re-delivered the complaint form again and then received a letter, 4 months later, on Sept. 19, 2007 (and over a year since my original complaint), stating that the request would not be honored.  I was to trust the administration to look into the matter.
     This was devastating for me to accept.  I had been through so much and suffered for so many years, and yet I still did not have a voice in the system.  If I had been violated in any other respect in our society, I would have had other avenues to pursue or other options to recover my rights, but when it came to the system of doctors and administrators who were responsible for my care, I had reached a dead end.  The Patient Advocate staff felt maybe I should seek out a counselor to give me support and guidance regarding the emotional trauma and the feeling of having been physically violated so many times over the years.  I had so many questions – was it the doctors who didn’t pay attention, or didn’t they care?  Was it for the insurance money?  Was I just given unnecessary tests and surgeries because I was healthy and could possibly survive – or if I didn’t survive, would there be consequences for these doctors anyway?

A First Visit to Mayo in a Wheelchair

At that first appointment at Mayo, I had all of these events clear in my mind in order to be able to relay them to the doctors.  As my daughter and I pulled into the lot, we found a handicapped space close to the area of the elevators.  We got out of our car and followed the signs.  It was only a very short distance to get us to the underground walkway, which would get me to my first appointment.  The walkway was huge and very long, at least for me.  When we got almost halfway to my destination, I had to stop, sit on a bench, because my left calf was hurting me more than ever.  I couldn’t take another step.  The expression on my daughter’s face and in her eyes was sad.  I believe this was the first time she had seen her mom experience such pain.  When I had been with her at other times I would stop before it hurt this much.  I was really pushing myself today, just wanting to get to that appointment.  My daughter said, “Mom I’m going back to where we came in and get a wheelchair.”  It wasn’t far and I knew she would be back before my leg recovered.  I was giving into the wheelchair because I didn’t want to be in such pain when I got to the receptionist’s desk, even if it was humbling.  I was so healthy in many respects and my pain didn't show in my appearance - I still looked good for my age despite the many years of pain that I had already been through.

            That afternoon, I had an angiogram of my heart, blood test, and a meeting with a cardiac doctor to report my history, turn in all my records, and medical reports.  I had a nice letter written by the Patient Partnership Program at the UW explaining the difficulties I’d had with confusing diagnoses and medical treatment.  I wasn’t sure that the letter, along with the outline I made of my records, would be read by any of the doctors.  After a long appointment, being interviewed by a cardiologist and reviewing my entire medical history, I was sent for the test I had so often asked for in the other systems, ‘the tell-all tread mill test.’  There were two nurses getting it started.  They took all of my vitals with blood pressure cuffs on my arms and legs.  At rest the Doppler test looked pretty good.  “Of course it is,” I replied.  I always said, “I don’t have trouble in my recliner or in my bed.  I have trouble walking to here and the parking lot.”  These nurses were listening and professional, and they never made me feel that what I was telling them about my past was unimportant.  When it was time for the treadmill another nurse came in.  I was joking with them asking, “What do you think all three of you are going to do with me?”  One smiled and said, “I’m just going to watch so you don’t fall on your face, get flushed, or show extreme pain.”  This was all so different from the other two systems, where there was only one nurse doing the test who did not show much regard for my opinions. 

The protocol for the time on the treadmill was only 5 minutes.   At a fast walking pace I knew wasn’t going to make five minutes.  I was right: I only went three minutes before I just couldn’t stand the pain any longer.  The nurses had me off the treadmill, on to the table with blood pressure cuffs on in record time.  This too was different than any other test I’d ever had.  These nurses were now aware of my problem.  They didn’t offer a reading, but did let me know that I had a very serious problem.  Each one of these nurses either held my hand, or patted my leg, and they were wishing me good luck on whatever came next.  They were so sincere that I wanted to cry with tears of relief for having someone show empathy.  I already knew I had a serious problem, but the care and concern they showed was new to me.   

By 2:00 p.m. that afternoon I saw Dr. Peter Gloviczki for surgical consultation.  He had all the test results of that day.  Again, this experience at Mayo was very different in that I didn’t have to wait weeks to get the results.  The treadmill test was very bad in both legs.  It revealed I had serious blockage in both legs, no doubt on the right side from all the other procedures, especially the recent blood clot surgery.  Dr. Gloviczki and his colleagues talked to both my daughter and me.  He reviewed each test that had been done and the results with us.  In Dr. Gloviczki’s opinion, the only solution that I had was to have a very serious surgery - an aorta-femoral bypass.  This would include attaching at the aorta just between the rib cage and putting in artificial arteries down both sides, attaching to the crossover bypass that was across my abdomen.  The artificial artery in my abdomen that had been inserted only last year during my fem-fem bypass performed by Dr. Cowgill might need to be replaced.  It was explained that if there was a blockage, the blood just lies there and begins to coagulate and re-block.

Part 16: Advocates Write Letter to Mayo Clinic

I went back to the UW, to Dr. Stone, who had ordered my heart catheterization in December 2006.  I returned to him because based on our previous interaction, I liked him and I thought he might listen to me. I wanted to speak up and tell him how upset I was.  We had an appointment on January 29, 2007, and I told him that in spite of my request not to go in on that right side during the catheterization, it had been done anyway.  I was surprised that Dr. Stone did put my complaint in his report.  Many of my complaints in the past years had not been included in my records. 

He then suggested an exercise program to help force the blood to the left leg, now that other occlusions were supposed to be open.  I agreed and went for physical therapy.  The physical therapist, a likable young woman, was surprised that all I could walk was less than 3 minutes and only 675 feet before the left leg pain started.  She set up the walking program for 4-6 weeks.  I was to walk until my leg hurt, and then to stop and repeat several times.  I was supposed to dance as much as I could – do anything that would force blood to my left leg.  This was a disaster.  I did everything I was told, and in just a few days I was worse, walking only 2 minutes before horrible pain.  I had to wait three times as long for my leg to recover than what it took me to walk.  It was the same as in all of those years before.  I then made the phone call to report what was happening.  I was told to stop the exercising, as it was not supposed to get worse.  There was something else going on. 

I was panic- stricken and afraid, but I wasn’t ready to give up.  I was so healthy otherwise, that I thought that somehow there would be someone who could do something for me so that I could live a full life and walk without pain and fear.  I didn’t want any more mix-ups, and I wanted someone paying close attention to my records.  I believed that so many of the errors that had been made in my case occurred because several of the doctors, both at Dean and UW, were not reviewing my records carefully.  I had another big decision to make: do I stay with this system or seek out another opinion before I lose a leg or worse?  I was aware of good reports about Mayo Clinic and I remembered my sister, and that they had recommended Dr. Acher for the surgery she had needed.  I knew that people with significant problems had good results after visiting the Mayo Clinic and that they were known for their excellence in care. 

At this time, I was still receiving phone calls from the nice lady with P.U.L.S.E. in New York.  The Center for Patient Partnerships at the UW was following me through all of this as well, and the Patient Advocate went with me on 3/20/07 to my primary, Dr. Haas at Dean.  Even though I was not involved with Dean he was glad to see me and pleased that I had some trust in him.  He called for the referral to Mayo.  The referral out of the Dean System had been denied twice before.  This time it was accepted because I no longer had Dean Insurance.  He called the Mayo Clinic and made an appointment.  It would not be until May 3, 2007. 

Part 15: Emergency: Now there's a blood clot

I had lived through the procedure and so I thought I was doing okay.  I was sent home in a few hours.  I cringe when I think how lucky I had been, to be smart enough to make an appointment with Dr. Acher for three days after the catheterization.  That following Thursday, 12/21/06 (Christmas being on Monday), I was almost sent home by Dr. Acher until I said, “But why are my legs so much worse?”  I could barely walk into the building.  He said, “Maybe we should get another test or two.  I’ll see if the Doppler person is still here.  It’s so close to Christmas, people are leaving early.”  Again, I was lucky the guy was there.  When he was doing the test, he jumped up, almost knocking his chair over in his rush to get to the doorway, and yelled down the hall, “Dr. Acher, don’t leave, she has a blood clot!”  Now it was an emergency.   Dr. Acher told me that I needed to get to the hospital right away. 

Because Dr. Acher was scheduled for an airplane flight to go on a skiing trip, he couldn’t do the surgery.  Before I left for the hospital, he introduced me to Dr. Mell, his colleague.  Dr. Acher assured me I would be in good hands in spite of my worries about how serious this could be with all the other times that right side had been traumatized.  I wanted Dr. Acher to do the surgery so badly, however, I needed to have the surgery right away and could not wait for him to return.  I agreed to get to the hospital to get the pre-op done that night and the next morning.  On the way to the hospital, I prayed that the blood clot would not cut loose and travel down into my leg.  I knew I was at risk to lose my leg or worse.  I told my three kids what was going on, but I didn’t want to tell them how scared I was.  We prayed that God would spare me, putting our trust in Him, and asked that whatever was to happen that we would have the courage and strength to deal with it. 

That night and the next morning I had all the pre-op tests.  The surgery was scheduled for noon on December 22, 2006.  I was getting smarter now about setting my brain on important details, by paying more attention to times and events.  Just before surgery, I already had the IV in my arm, and the attendant told me, “Dr. Mell is right on time, he’s waiting for us.”  I looked at the clock; it was now five minutes to twelve.  As I was rolled out of the cubicle on my way to the operating room, I knew I was going under, and I do not remember getting to the operating room.  The next thing I remember was waking up to a conscious level when my bed hit the doorframe to my private room.  I looked at the clock; it was now 5 minutes after seven.  My brain was set on the last thing I remembered, seeing noon on the clock.  I knew I had been out for 7 hours, never remembering the recovery room.

Despite my previous surgeries and the pain I had suffered, that night was the worst I had been through.  I had sent my family home because I had spent many hours in my life sitting with people, waiting for them to either recover or die, and I knew how long those hours were.  I didn’t want my kids watching me when they were helpless and unable to do anything for me.  The night seemed endless and I felt terrible.  I believe it was all those hours of being unconscious and the effects of sedation, but I just wanted the pain to stop and to be at peace.  I knew I was older and these surgeries were taking a toll, not just physically, but emotionally, too. 

Two days later, I was feeling that I shouldn’t be sent home so soon, but I wanted to get out of that hospital.  I had a wonderful neighbor to check on me during the day until my son got home from work.  What would I have done without my son John?  He moved in with me to help in 2000 when I was having my first back surgery.  I thought the stigma of living with his mom bothered him, but he never complained.  It’s just that after the first back surgery, the procedures never stopped, and I don’t believe that he dared to leave me.  Even though he was working two jobs, he was still there at night and on weekends.  I wasn’t completely alone.  My other two children, Diane and Steve, and their significant others, were always there when I needed them, assisting continually with housework and yard work.  Without their help, I would not have been able to remain in my house.

On December 28, 2006, I returned to Dr. Mell.  I still felt terrible and I didn’t have a clue if the surgery had been successful or not.  Dr. Mell wrote that I was on track for six days post-op.  By January, I wasn’t feeling things were on track.   I was planning on returning to Dr. Timmerman, even though he was with Dean, because I trusted him.  I was devastated when I received a letter from Dr. Timmerman stating that he was also leaving Dean and moving to Spring Green to open a practice there. His letter to me explained that he was not allowed to see former patients from Dean. 

On January 18, 2007, I saw Dr. Mell again. I reported how limited my walking was, and asked if I could have a treadmill test.  Dr. Mell was very defensive, and I felt he was extremely rude.  He told me, “I won’t order any more tests for you with the results I have on the Dopplers and other tests.”  I was stuck; I couldn’t go back to Dr. Acher now.  I did not feel that he would go against his colleague, and besides, I felt that the UW was protecting the Dean system, as the UW doctors seemed reluctant to talk about what had happened to me in the past. Given my past experience, I felt that doctors wouldn’t speak against other doctors, in spite of the misery of their patient.  Only a Dr. Timmerman would jeopardize his position to stick up for me, and Dr. Timmerman was gone. 

Part 14: Get Records, Change Insurance

 I then made the decision to get my medical records.  It took me two weeks to filter through a folder that made me look like a severely sick maniac.  I only had a few doctor’s appointments in the 20 years prior to 1993.  And now, looking at these records made me sick, because I saw all of the times that I had been put at risk, while I had trusted the doctors to be in control of my health and my life.  Getting my records gave me a better understanding of what had happened to me – why my social life had been such a disaster all those years, all the money I had spent on co-pays, and all of the frustration and fear.  The file was a foot thick and didn’t even include hospital or test reports.  As I sifted through the pounds of paper, making an outline, I highlighted all of the times my leg pain was mentioned, all the times pulses were not heard in my left leg, and the many times doctors suspected claudication.  I also saw another time that Dr. Cowgill mentioned completing a physical exam that had not been done, this one dated 4/19/06.   This was a fairly recent appointment, only a few weeks before the exam he supposedly did on 5/31/06, so I vividly remembered the dates.  I then called Jacquelyn Wineke again and this time filled out a written complaint report and asked again for a referral to Dr. Acher at the UW.  After several weeks, this was also denied. 

I then made a decision to leave Dean Health Plan and get other insurance. Because I had lost my job due to budget cuts, it gave me the opportunity to change my health care provider.  I would have to wait for a few months, but maybe it would save my life, considering how things had been going.  I had conducted research on which health care provider would allow me to switch doctors based on my condition and their expertise.  Hopefully, this would prevent me from being shuffled between doctors within the same system, as well as subjected to decisions influenced by professional and corporate concerns.

In the meantime, I didn’t want any more mistakes to be made by doctors as a result of miscommunication and I wanted to have a clear document explaining my history.  I picked up the phone one day and called a writer, A.B. Orlick, to help me put my outline together.  She was so concerned that she began searching the Internet to find resources for me.  She called an agency in New York, P.U.L.S.E., which helps make a difference for patients who have had bad experiences with the health care system.  I spoke with Ilene Corina, who called me and then called the Center for Patient Partnerships at UW-Madison.  They got in touch with me and were willing to follow me through the medical system. 

I got my insurance changed to Physician’s Mutual in August of 2006.  I had to wait for almost 3 months to get to Dr. Acher, the vascular surgeon at the UW Hospital.  He ordered an MR angiogram and an exercise PVR exam.  Dr. Acher feared a heart problem and said, “I won’t touch her until I have a heart catheterization in order to exclude a major heart condition.”  He was considering an aorta-femoral bi-femoral bypass, if there were no other cardiac concerns.  Dr. Stone at the UW ordered the catheterization.  I specifically asked that they not go in on the right groin area, explaining that there was bad trouble there.  Recalling the last angiogram with the bruising, I told them that the surgeon was not able to get in on that right side.  Again at the hospital just before the catheterization, I made this request again.  The young doctor I spoke with just said, “You’re slim and healthy - you will be a piece of cake, easiest one today.”  This made me nervous, but as the head of the vascular department, Dr. Georgio Gamelli, was to do my procedure, I decided not to worry.

I wasn’t awake for the first part, so it may have been Dr. Gamelli who performed the heart catheterization.  However, I was awake for the last part of it, and I was horrified to realize that it was the younger doctor who was working on me.  He told me that the heart catheterization was finished and only the leg procedure was left.  I lay there, knowing it was that young kid I had talked to, the one who had seemed unconcerned about what I had told him about the right groin area.  It wasn’t until the end of the procedure that the older doctor came in to check.  

Part 13: Timmerman Referred Me to Patient Advocate

        I was concerned with this new angiogram – to be fair; I was scared after being left black and blue on both sides during the last angiogram in 2004.  In spite of my apprehension though, I did meet with Dr. Cowgill.  When we met I requested that he be present during the procedure.  He didn't seem too pleased with the request, and, frowning, said, “That isn't really protocol – You wouldn't want me doing your angiogram!”   His reluctance to be there and his standoffish comments left me disheartened.  I hadn't asked him to perform the angiogram; I simply wanted him present in case anything went as terribly wrong as it had during the last angiogram.  By this point I had grown desperate. I wanted my doctors to take some accountability for the decisions they made.  I had simply tried to communicate my anxiety to my doctor. I wanted so badly to talk to someone about this, and to have somebody listen and answer my concerns.  That had not happened.  I would later learn that Dr. Cowgill had written in his notes from this meeting that I “seemed ambivalent about the procedure.”  Up to this point, my records do not really show any ambivalence on my part.  I had begun to question more actively what my doctors were recommending for me and what that meant for my life.  It had all become so crazy, and the more I thought about it, the more I realized how many times my life had been put at risk by these vascular doctors.  I wanted to talk to someone that I felt might listen to me, and I decided I needed to get out of the Dean system in order to trust that my doctors had my best interests in mind.  After conferring with Dr. Timmerman, he referred me to patient advocate Jacquelyn Wineke.  I went to see her, and she reassured me that she would look into my history and complaints and help me to get a referral outside of the Dean system.
       I then went to my primary doctor, Dr. Haas, asking for a referral outside the Dean system.  I specifically asked Dr. Haas to make the referral to a Dr. Acher at UW hospital.  I knew of Dr. Acher because he had operated on my sister after she had been referred to the Mayo Clinic and they in turn referred her to Dr. Acher, saying that he was one of the best surgeons to provide the type of surgery that she needed.  She had also had blocked blood flow, and the same vascular surgeon, Dr. Kantamneni, who I had also seen many times, treated her.  Dr. Acher had performed surgery on her; he had been forthright, sincere, dedicated, and stood by her side for hours throughout her surgery.  After the surgery, he stated that it was too late and that she should have had the surgery years ago.  While it was too late to save my sister completely, he did give her another year and a half of life.

       Unfortunately, the Dean Health plan denied my referral.  My primary doctor suggested I get a second opinion and pay for it myself.  This was not possible with my financial circumstances.   I had been working as a job supervisor for supported employment for disadvantaged individuals; however, my employer was in the midst of closing down because they had lost their funding, which meant that after 16 years of service I would be living on social security and using Medicare as my insurer.  Although I felt fortunate to have Medicare, it was not enough on its own, so I had to buy a supplement to cover the services that Medicare did not cover.  Social security was hardly enough to cover the costs of living, so the cost of huge medical bills would be out of the question.
       As I left my primary doctor that day I asked for a copy of Dr. Cowgill’s last report.  On the way home I happened to see that Dr. Cowgill’s report indicated that he conducted an exam on 5/31/06 (just a week before).  An exam was never done.  I had sat at his desk facing him the whole time and neither he or a nurse had laid a hand on me.   I was so upset when I saw this report. No wonder that patients slip through the cracks of the medical system!  If another doctor saw this report he would assume that an exam was done and would perhaps overlook something that he believed had already been checked.  I stopped to let advocate Jacquelyn Wineke know about this.  When I got home, I called my primary doctor to let him know what happened.  He suggested I see the Patient Advocate - where I had just been.