Postscript:

Spring of 2005 was a good time for me. Life was good and I was on top of the world. I can’t recall a time in my life when I was happier. I was able to spend time at the cabin and completely relax. Connie and I were going places and doing pretty much whatever we wanted. It is not funny how life can change in a day. I was at work one night and got a call from Michael saying that Connie had passed out. She woke up shortly afterward and was completely alert and oriented. I was concerned about her sugar but that was normal. It was decided that Michael would stay with her for a while and keep an eye on her. A couple hours later she passed out again. At that time an ambulance was called and she was taken to the Emergency Department in Waukesha. All labs, EKG and cardiac enzymes were normal. She was awake, felt fine and wanted to go home. It was recommended that she be admitted for further testing. She was reluctant and I had to convince her to stay for a couple days to make sure everything was all right. Over the next couple days she had serial cardiac enzymes as well as CT scans, a carotid Doppler and an echocardiogram. All tests were normal. I went to visit her with the expectation that I would be taking her home that afternoon. Her cardiologist wanted to keep her another night and do a stress test the next day. I was agitated and felt that this was excessive. Her labs, EKG and all other tests were normal. I wasn’t certain that a stress test was necessary or would change anything. Again, I convinced her to stay one more night. I arrived at the hospital the next day with the items she would need upon discharge. I fully expected to take her home that afternoon. The cardiologist came into the room after the stress test and sat down to have a serious conversation with us. Her stress test showed significant ischemic changes consistent with coronary artery disease. I was in shock. I felt like someone kicked me in the gut. There was a flurry of questions and conversation with the final decision being that she needed a heart catheterization and was not stable enough to go home. We were both in disbelief, although not in denial. I am not certain how long it was before reality set in. I called work and told them I would not be in for a few days. The catheterization was scheduled for the next morning. I arrived early to comfort her before any medications were given. Medications were given at 7:00 am and she was well sedated when she left for the procedure. I was seated in a waiting room with my eyes closed and my head back. My mind was racing, contemplating all the scenarios I had witnessed in the past. Sometimes, knowledge is not a blessing. It was not long after Connie was taken to the Cath Lab that I got a call from Jadon’s mom. She was still living with us and was taking care of Jadon at the house. Jadon was in the basement and got into some chemicals for the hot tub. His face was swelling and she was concerned. I had to leave the hospital to make sure he was not is serious trouble. Arriving home, I found Jadon had a significantly swollen lower lip. I was concerned about his tongue or oral swelling closing off his airway. Examination showed this not to be the case but I was not comfortable leaving right away. I gave him a weight based dose of Benadryl and watched him for an hour. There was no change and I left for the hospital with instructions that if he started drooling, had a muffled voice, if any new swelling was noted, or he had any signs of difficulty breathing, she should call 911. The cardiologist found me in the waiting room and explained that Connie had a subtotally occluded LAD and required two stents after PTCA. The good news was that there had not been any damage to the muscle and she had a normal ejection fraction. The interpretation of all this is that she had a blockage in one of the main arteries of her heart requiring a balloon to open it and a stent to keep it open. Her heart was functioning normally and pumping blood in the normal amount. Upset at the finding but relieved that everything went well and she was okay, I went to her room to be with her.

She was laying on her back resting comfortably as I entered the room. Still sedated, she would be flat on her back for four hours after the procedure so the puncture in her groin did not break open and bleed. I walked around the bed and softly called her name so as not to startle her. Her eyes opened wide and she had an alarmed look on her face. She said “Who are you? I don’t know you. I don’t allow strangers in my room”. Having been married for thirty seven years at that time, this concerned me. I was thinking something neurological had happened, although her speech was clear. I wasn’t going to press the issue and got the nurse to page her cardiologist. I entered the room with her cardiologist and he got the same response from her. At that time there was concern she was having a reaction to medications. This was the first time she had ever been given morphine and narcan was ordered. Connie continued to argue with the doctor, stating she had never seen him or me before. The cardiologist spoke to her calmly with reassurance as the nurse administered the narcan. As she continued to argue with him, she slowly became more and more oriented as the narcan reversed the effects of the morphine. At one point she said she thought she may have seen him before. Then she stated that she, of course, recognized him. He was her cardiologist. She never received morphine again and had a similar reaction with all injected opiates. Other than syncope (passing out), Connie never had any symptoms of angina. It is not uncommon for diabetics to lack symptoms of heart disease. Diabetics tend not to play by the rules of expected signs and symptoms. She had terrible GERD and was often up until late at night with upper abdominal pain. This can be confused with angina and we spent several nights in the emergency department over the next ten years. Her lab tests and EKGs were always normal and she would be sent home. Annual visits with her cardiologist led to periodic catheterizations and, ultimately, a total of seven stents. GERD is often worse at night when lying flat and can sometimes be relieved by elevating the head of the bed. Trying to help with her discomfort, I purchased an adjustable bed frame and elevated the head of the bed slightly. She was still up half the night with discomfort. The only relief she could get was from drinking a carbonated beverage and belching. Several thousand dollars was spent on bedding, mattresses and mattress toppers to try and make her more comfortable. Nothing I did helped. We analyzed her diet and meal times but it was to no avail. Prescription and over the counter medications did nothing to help. She often slept on the couch.

In June of 2015, Connie received a letter from her cardiologist. It had been a year since her last visit and two years since her last catheterization. He recommended a stress test as a precaution. He had changed offices and was now located in Menominee Falls, a twenty minute drive. She arrived at the hospital on the morning of July 7th and registered at the outpatient services clinic. I was allowed in the room with her for the procedure. The stress test hadn’t gone very far before it was stopped. She had significant changes in her EKG indicating a progression in her heart disease. It was recommended that she stay but she declined and agreed to return the next morning for a catheterization. The catheterization was done early the next morning. I waited anxiously in a recliner in the waiting room. When Connie was back in her room and awake enough, her cardiologist came in to discuss her results. The news was numbing. Over the last two years she had two heart attacks involving two separate arteries. Her LAD was subtotally occluded and she had a reduction in her heart function in that area. A subtotal occlusion is where the contrast (dye) stops at a blockage but the artery shows some blood getting through, although you can’t see it passing through the blockage. A second coronary artery, her right coronary, was blocked with collaterals filling the artery after the time in which it should fill. A collateral is where a new blood supply develops around a blockage. There was also a reduction in her heart function in that area. Her third major coronary artery, the circumflex, was ninety five percent blocked. She was a ticking time bomb and at serious risk for sudden death. Her ejection fraction, the amount of blood being pumped, had gone from fifty five percent (normal) to forty percent. This was due to muscle damage from her heart attacks. A person can lead a pretty normal life with this EF. With this

finding, she was placed on a heparin drip (blood thinner) and admitted to the ICU. Surgery was planned for the next morning. I knew the surgeon from when I did CV surgery for ten years and was comfortable with him doing the surgery. A family meeting was called with Michael and Jadon. Jadon had become an elite soccer player and was on a traveling team. He had an international tournament in Minnesota that weekend and Connie and I were supposed to go. I can’t help but believe that it may have been Connie’s last weekend on earth if we had gone. The complex was large and she would have been walking long distances from field to field. With an event of this significance, we didn’t want Jadon to miss the opportunity. I knew from experience that an EF of forty percent usually indicated a good outcome for bypass surgery and we encouraged Michael and Jadon to go to the tournament. That night, her surgeon came down ill and was not able to perform the surgery. She remained in the ICU on Thursday and she was rescheduled for Friday am with a surgeon I did not know. I had some reservations about this decision but was concerned about delaying the surgery over the weekend. Surgery started at seven am the next morning. Once again, I waited in a recliner in the waiting room. I anticipated the surgery to take about four hours. I was concerned around noon and began inquiring about her progress. I was assured that everything was fine and that the surgeon would be out to talk to me soon. He found me in the waiting room and stated things went well and she would be back in her room soon. After Connie was settled in the ICU and the nurse was caught up with things that needed to be done, I was allowed back to the room. Walking into the room I was in shock. There were approximately eight pumps running with medications and IV fluids. I immediately walked to the pumps to see what medications were running. This is not normal for a surgery that went well. She was on high doses of four medications to support her heart. Occasionally, one or two medications in small doses may be required to support the heart for a short time after surgery, but this was nothing close to normal or what I expected. Her EKG showed that she had a heart attack during surgery and her heart was now pumping at twenty percent. It was obvious to me that Connie almost did not survive the surgery. It was now a matter of waiting to see if she would regain any of her heart function and if she could be weaned from all the medications. Several long days were spent in the ICU. Several long nights were spent sleeping in a recliner. I took a medical leave from work to be at the hospital. The anesthesiologist for Connie’s surgery was also her intensivist. He was at the hospital nearly twenty four hours a day and lived only a couple minutes away if needed while at home. He was always on call. I watched his adjustment of heart medications in awe. I understood what he was doing and thought of him as a magician. Connie’s chances for survival was enhanced by this man and his level of competence. Michael and Jadon returned from Minnesota and spent time at the hospital as they could. Connie was slowly weaned off medications over the next several days. It is not uncommon for a heart patient to be extubated within the first twenty four hours post-op. Connie was intubated for seven days. Her sugar was controlled with IV insulin and she was sedated to keep her comfortable. Serial echocardiograms showed no improvement in her EF. After a week she was finally stable enough to be weaned from the ventilator and extubated. I was allowed to remain in the room during this time. She required BIPAP (breathing support) on and off for the next few days. She developed atrial fibrillation a couple times and required medication to control her heart rhythm. Her weight was up over twenty pounds and gentle diuresis was started. Her main complaint was pain between her shoulder blades from being on her back for several days. She constantly requested a back massage to ease her pain. Her other request was water. Her mouth was dry and she needed the moisture for comfort. Water had to be limited to sips because of her excess water weight. Jadon was there taking care of his grandma whenever possible. He would ask the nurse if she could have water and helped her with drinking. He was also there for a back rub. He was rubbing her

back one day and it jiggled the wires for her cardiac monitor making it look like she was in ventricular tachycardia. This is a rhythm that may not be compatible with life. A half dozen nurses were instantly in the room to evaluate her. When Jadon stopped rubbing her back her rhythm was normal. Everyone checked their own pulses and went back to their assigned tasks. Connie continued to make slow progress. Over the next few days she was able to eat and get up with assistance. It was obvious that she would need help when she came home. I bought a shower chair and a walker in preparation for her homecoming. I also put a wand on the shower head in the shower so she could sit and shower. Michael and Jadon moved in with us to help take care of her. Although still weak, she was finally ready for discharge. She was taken to the front door in a wheelchair and I pulled the SUV up to the front door. Still too weak to walk on her own, I helped her into the vehicle. It was a happy but concerning time getting her home. She needed assistance going to the bathroom and anytime she got up. Taking diuretics, she had to get up to the bathroom several times a night requiring me to get up and help. She had a balance problem and was dependent on the walker. The basement stairway was open and it was decided that she would not walk by the stairs until she was walking better. Her medication list consisted of about fifteen meds and a daily pill container was purchased. I took care of all her medications. Using the walker made her feel like an invalid and she hated it. She was determined to free herself from it ASAP. She started cardiac rehab three times a week. Rehab was only two miles away at ten am. I would pull the SUV up to the front door, go in and get a wheelchair, get her into the wheelchair, wheel her inside, park the SUV and walk back to the building. The elevator was taken to the fourth floor and she would do whatever exercising she could do. I would spend the hour in the waiting room. She was always on the cardiac monitor and strict parameters were maintained. After a couple weeks, she was strong enough to go the grocery store. She was happy to do anything she could to get out of the house for a while. I would pull up to the door, park, go inside, get an electric cart and ride it outside. Connie would ride the cart into the store, after I helped her onto it, and wait for me to park the SUV. She didn’t like the electric cart and was determined to get strong enough to not need it. She had weekly doctor visits for the first couple weeks as is routine. During the months of October, November and December, she had 74 doctor and clinic appointments in ninety days. Her diuretics were not working and her kidney function was not good. Her water weight was up forty pounds. Her legs were swollen and weeping fluid. She was admitted to the hospital for diuresis and monitoring of her kidney function. It took several days to get her system in balance. Home medications were adjusted and she was able to return home. Cardiac rehab was resumed after clearance from her doctor and she was anxious to return. She would sit on the couch and periodically do arm and leg exercises. She was determined to be independent again. Recovery was slow but progressing. After a few weeks she was able to walk into rehab with assistance. Then we were able to walk a flight of stairs. She was able to walk in a store, sitting down to rest occasionally. Toward the end of rehab, she was able to drive herself. An ejection fraction of twenty is life altering. It limits what you can do because of fatigue and shortness of breath. An EF of less than thirty puts a person at risk for arrhythmias and sudden cardiac death. The heart does not pump enough blood to adequately perfuse the kidneys and they do not function properly. Caution has to be used when taking diuretics because they can damage the kidneys. Too little and the person will develop heart failure. Too much damages the kidneys. There is often a delicate balance between the two. Because of her poor heart function, Connie was referred to a heart failure clinic for management. She was put on diuretics, potassium, medications to reduce the workload of the

heart, medication to regulate her heart rate and blood thinners. She was taking so much medication it was a wonder she had room for food. Her providers had a difficult time regulating her diuretics and preserving her kidney function so a PICC line was recommended with medication twenty four hours a day to support her heart. She had a fanny pack that contained a battery operated pump and the bag of medication. The pump was powered by a nine volt battery and had to be changed daily along with the medication bag. Three to five bags of medication were delivered special delivery in a cooler a couple times a week. A visiting nurse was sent to the house once a week to change the dressing over the PICC line. We had to plan our day around the time the medication bag had to be changed. She never had a problem with her heart rhythm but an AICD (defibrillator) was recommended because of the high risk. This is inserted much the same as a pacemaker. After insertion, a monitor was sent to the house and recorded her rhythm. Using the monitor, she had to do an interrogation of the AICD every three months. The results were sent electronically to her electrophysiologist for interpretation. The AICD never detected an arrhythmia and never shocked her. Connie continued with weekly visits to the heart failure clinic in addition to visits to her endocrinologist, surgeon, electrophysiologist and three visits a week to cardiac rehab. The visiting nurse had to be worked in between these appointments. The focus of her visits to the heart failure clinic turned to getting her strong enough for a heart transplant. This was a shock to both of us. Neither of us anticipated hearing those words. Medications were tweaked and her kidney function was closely monitored. She was sent to a nephrologist to determine if she needed a heart and kidney transplant or just a heart transplant. It was his opinion that only a heart transplant was needed. She was placed on the heart transplant list but was inactive because she was not strong enough for it yet. Being on the list was important because, even though inactive, she would move up on the list increasing her chances of getting a heart when she was ready, if one became available. The medication Connie was on, Amrinone, can only be administered for six months to a year. After that, it can actually damage the heart. After about six months, Connie’s system was showing signs of fatigue from the medication and an LVAD (left ventricular assist device) was recommended. An LVAD is like an artificial heart but only supports the left side of the heart. She would actually have a small pump attached to her heart and in her chest. She was active on the transplant list at that time and had been moved up from class 7 to class 1B. This was because of her dependence on IV medications to support her heart. The clinic Connie was going to recently lost their LVAD surgeon and it was going to be some time before they got a new one. Because of this, her doctor went out on a limb and sent her to another hospital to be listed for a transplant. This was a big decision for him and I am certain he got a lot of flak for this decision. We were grateful he was willing to go that far for her. The unfortunate part of it was that she would have to go through all the tests and evaluations again. She would not, however, lose her place on the transplant list. Her oral surgeon had to do a second evaluation in a three month period. He felt this was not necessary and, although he did the evaluation, he did not charge us for the visit. We met with the LVAD surgeon, with whom I worked when I was doing CV surgery. I knew him to be an excellent and efficient surgeon. We were both comfortable with the procedure and surgeon and decided to proceed with the surgery. Surgery was scheduled for April 24th, 2017 at 7:00 am. She was admitted to the hospital the night before for labs and preps. Heart surgery the second time is not like the first time. There is scarring and it can be tedious work freeing the heart from the adjacent structures. This can add significant time to the procedure. Longer times in the OR can lead to longer recovery times. Her surgeon was able to complete the implantation in three and one half hours. Connie did much better after this surgery and was relatively quick to recover. The expected stay after LVAD surgery is three weeks. Much of this time is dedicated to training family to care for the LVAD. Because of my experience with sterile technique and wound care, Connie was discharged after two weeks. I was comfortable with this but it took Connie a

while to get to that point. We were back to shower chairs, walkers and electric carts in stores. She was released to cardiac rehab in a couple weeks and looked forward to going. She had developed a relationship with the staff and was quick to make friends. This was her biggest social outlet at the time. Working nights, I was able to get her to rehab and all her follow up appointments until she was strong enough to get to rehab on her own. I always went with her to doctor and clinic appointments. I was home with her during the day and Michael was with her in the evenings until I got home from work, usually around three am. I was never comfortable leaving her alone overnight. She did well with the LVAD and we were able to go places and do things. She would fatigue easily and have to rest on occasion but we could go most places we wanted to go, with caution. Family visited from Michigan and we all went to the House on the Rock. She spent most of a day walking through the entire place with only a couple stops to rest. There were many medication adjustments and the balance between diuretics and kidney function was again a problem. Overall, she made good progress. The goal was to get her strong enough to be placed on the active transplant list again. Her status was seven, which is on the list but inactive. She continued to move up on the list. Having an LVAD requires a battery pack to run the pump inside the chest. She had a fanny pack which held two batteries and the drive motor. The drive cable comes from inside the chest, out through the abdominal wall and attaches to the motor. There is a communication between the environment and the inside of her chest. That is the reason for strict sterile technique and daily dressing changes. An infection would have been disasterous. The drive line could be dislodged with a firm tug and caution was needed to prevent dropping the battery pack. She slept on her side with the pack in the middle of the bed. She did not like the fanny pack and we purchased a fisherman’s vest with several large pockets and Velcro closures. This accommodated the batteries and the motor and was more comfortable for her. Everything had to be planned around battery changes. A battery would last about eight to twelve hours. We had to ensure there was enough battery power to last for the time we planned to be gone and we always took an extra battery. When leaving for an overnight stay, we had to take the charger and the extra four batteries, along with a dressing pack for each day and the extra driver. It required a suitcase just for the extra equipment needed. There were several alarms on the LVAD. One was serious, the rest just for caution. The serious alarm was about eighty decibels and indicated a failure of the pump. This was an emergency and the driver had to be replaced with the extra driver immediately. We never heard that alarm. Another alarm indicated low blood flow and required a change in the position of her body. A third alarm was for a low battery. We were always aware of the remaining battery power and this alarm never came as a surprise. The low flow alarm often went off several times daily, day and night. Sleep was frequently interrupted. All alarms were downloaded and reviewed during clinic visits and adjustments were made to the flow of the pump to maximize flow and reduce the number of alarms.

Connie loved going to a casino, any casino. She actually did well and came out ahead most of the time. She is one of the few people that made money at the casino. I never had that luck. The casino was not my choice for entertainment but I was happy to go with her so she could get out of the house. Deb was a close friend and Connie’s casino buddy. They would go to casinos as far away as Michigan. They also met about once a week to go out to breakfast. Family would visit from Michigan and the casino was always one of the stops. Connie always had a free night stay at the casinos and we would use these as a get-away.

In January of 2017, a new company bought out the hospital where I worked. We all knew there were changes coming and realized that the group I worked for may be replaced by a new group. The announcement was made about October that we would be replaced and would have to interview and sign a new contract if we were accepted to stay on in the ED. I was not offered an interview. Although

no one could say it and I have no proof to back it up, I believe it was because I was sixty seven years old and experienced. They could have hired two new grads for the same pay I would expect. There were significant bills for medications and office visits and I could not chance a change in insurance. The company I worked for recently signed a contract to staff the ED and a local clinic in Wisconsin Rapids. This was one hundred and seventy five miles from our home in New Berlin, but twenty five miles from our cabin. I applied for and was accepted for a position starting on January first. I am not certain why I was not utilized in the ED. With twenty three years of experience, I felt I had something to offer. As it was, I was going to work in a walk in clinic. Whatever the offer, I had to take the position for continuity of our insurance. It was agreed upon that I would work most of one week, eleven hours a day, and have the next week off. My commute from the cabin would take thirty five minutes. This was the best we could come up with. It was during this time that a job at the VA in North Chicago opened up. I had hoped to work at a VA for the last few years of my career and was signed up on the VA job website. Being a veteran, I can relate well to their experiences. Many times I sat and cried with a veteran in the ED when they were in a crisis. I could not only relate, I felt the same emotion and their crisis brought out a pouring of pent up emotion from me. I was applying to both places at the same time and there was daily paperwork to be done. I interviewed in Chicago and made several trips there for processing. I was hired for the position but was told not to turn in my notice until everything was completed. The position was running the surgical suite at night when everyone else was home. I was responsible for the titrating of medications, running codes and intubations. I had not run a code or intubated for several years so a refresher course was planned and I would have to prove competence in these areas. The hours were from 4:40 pm to 8:00 am, fifteen and a half hour shifts. The pay was reasonable and I was looking forward to starting. I checked with the transplant hospital and found that the insurance was acceptable to them and there would be no problem changing. After seven months, Connie was strong and stable enough to be reactivated on the transplant list. She continued to move up on the list even when she was not active. Blood transfusions were given during the LVAD procedure and she had antibodies in her blood stream as a result. It was explained that these would limit her ability to get a heart and her wait would most likely be longer, but some of the antibodies would resolve over time. Life went on with the new normal. It was November and deer season opened the next weekend. The only opening day I missed since getting out of the army was in 1996 when Connie booked a cruise during that week, much to my dismay. Connie could not be left alone in case of an emergency and because of the need for daily dressing changes. With a suitcase full of dressing packs and electrical devices, Michael, Connie and I went to the cabin for opening day. Ken, a friend who hunts with me every year, arrived on Friday. The hunt was unsuccessful that year and we returned home for Thanksgiving week. With Connie being 1B and antibodies in her blood, we anticipated a long wait for her transplant. We had several discussions over the last few years about what should and should not be done if either of us became critically ill. We didn’t want to be dependent on a ventilator. There was to be no long term tube feeding. If we didn’t have quality of life and there was no hope for improvement, all support measures were to be discontinued. There is a difference between living and just being alive. On Monday, November twenty sixth, I went to work, as usual, at 5:00 pm. I was scheduled to work the next few days. I arrived home around 3:00 am on the 27th and checked on Connie, as I did every night. I walked into the bedroom and made sure that she was breathing and waited for her to move something. I went to bed shortly after and fell asleep quickly. Shifts in the ED usually wore me out and falling asleep was not difficult on days that I worked. Connie’s phone rang at 7:00 am. It was the hospital and she had a heart. She needed to be at the hospital by 8:00 am for preparation. The donor heart was still being evaluated but it was a good match.

She hung up the phone and burst into tears. She was afraid and overcome by emotion. We had conversations about transplantation several times and both decided it was the course to be taken. I held her tight reassuring her that everything would be ok and reminding her about our conversations and the decision to proceed. Now was not the time to be making that decision. She expressed her fear over the anti-rejection medications. She has always been sensitive to medications and was concerned that they would be too strong and suppress her immune system too much. I explained that they could titrate the dosing and believed that she would be fine. In my heart I know I was right, but I will live with that decision forever. She nervously packed a few things she would need as I gathered up and packed the electronics. Conversation was sparse on the way to the hospital. She just didn’t want to talk about anything regarding the transplant at that time. We talked about notifying family and me taking a leave from work. I let her off at the front door of the hospital and went to park the SUV in the ramp. She was assigned a bed in the ICU and had already been taken there when I arrived inside. Michael arrived later, Jadon was with his mother. As is typical with a heart transplant, things move at a snail’s pace. This is exacerbated by the anxiety associated with the coming events. Much of that day is a blur and I can’t remember most of what happened. I do know I spent the entire day with her in the ICU. She had preps with antibacterial soap twice and lab draws. It was about 8:00 pm when she was taken to the OR. I walked to the elevator with her, kissed her on the forehead, told her I loved her and I would see her awake in a day or two. It is the last time she was ever able to speak to me. I was directed to the ICU waiting area and given a tablet on which progress would be relayed to me throughout the course of the night. A private room was offered to me but I chose to sleep on a couch in the waiting room so as not to miss a visit from the surgical team if there was one. It was several hours before the procedure started. I received notice when the heart arrived and a couple other times stating all was going well. It was just before three am when a nurse came to the waiting area to tell me that the procedure was finished and they were closing. I knew her from when I worked there on the transplant team. It was several more hours before I was summoned to the ICU. I knew the ICU nurse from before and watched her move about the room constantly tending to IVs and medications. I was impressed by her competence and sympathetic to her level of fatigue at the end of her twelve hour shift. Connie was on five drips to support her heart and an external pacemaker, the number of drips being uncommon after a heart transplant. Her blood pressure was labile and drips were adjusted accordingly. Later that day an echocardiogram was done and showed the right side of her heart struggling. It also showed a small amount of tricuspid valve regurgitation. I was not allowed to know about the donor other that she was thirty years old and from another state. It was surmised that Connie’s lungs were not as compliant and that was the reason for the right heart having difficulty. All that could be done was to wait and see if her new heart would be able to get stronger and compensate for the resistance. There are several things that can be done to support the left side of the heart, but little that can be done for the right side. She was also in kidney and liver failure. She would require daily dialysis and it was hoped that her liver would recover. Her heart developed a new conduction system over the next two days and her heart was beating on its own. The pacemaker remained attached in case it was needed. I spent the next couple nights in a recliner, mostly at her bedside. The hospital prefers family not be in the room at night. After a few days I had to think of my own health and went home at night to sleep. We only lived twenty minutes from the hospital. Meals were purchased at the hospital cafeteria. Extubation (breathing tube removal) usually occurs in a day or two but she remained intubated. Her liver function returned to baseline but she still required daily dialysis. Her new heart would not support her blood pressure during dialysis and her support medication had to be increased during dialysis. Drips to support her heart remained, anti-rejection medication was started, but little progress was being made. I was

concerned about her still being on the ventilator after a week and spoke with her surgeon. I was relieved to find that she would not require a tracheostomy for at least another week. That was different from what I was familiar with. A feeding tube was placed so she could get calories and protein necessary for wound healing. She was turned from side to side frequently in an attempt to prevent pressure sores. Slow progress was being made and she was ready to be weaned from the ventilator. The sedative she had been on was weaned in anticipation of this. Extubation occurred on the ninth post-op day, the day before her birthday. She still required breathing support for the next couple days and was kept on BIPAP. Balloons and cards arrived in her room and there was an expectation of a full recovery. Flowers are not allowed in the ICU because they may contain or attract insects. She was unable to speak because of prolonged intubation but there were signs of progress. There was serious concern when it was noticed that she was barely able to move her arms and legs. It hadn’t been noticed before because she had been sedated. It was determined that she had developed a myopathy, an inability to use your muscles. This occurs rarely in a patient with a critical illness. It took all her strength to move her arms and legs and she was too weak to lift them off the bed. If she had an itch, someone would have to scratch it for her. She received breathing treatments 4 times a day and physical therapy daily. She got to the point where she could sit on the side of the bed with assistance but it was difficult for her. Eventually, she would be able to stand at the bedside with support if only for a moment. She was still on daily dialysis. Speech therapy evaluated her for her swallow and worked with her daily to return her ability to speak. A procedure was done and determined she had a paralyzed vocal cord preventing her from speaking. She could only communicate in a soft whisper. She was also unable to swallow so the feeding tube remained. Her incisions were failing to heal appropriately and the dose of one of her anti-rejection medications was reduced. With Christmas approaching, one of the nurses bought her a small artificial tree and put it in her room. Decorations were brought in and we decorated her room. I brought her larger “Charlie Brown“ Christmas tree from home and put it on a table so she could see it. Her “Charlie Brown” tree is a tree she bought several years before. It stands about five feet tall. She thought it was cute and I just thought it was ugly. I tried to throw it away several times but she said she still wanted it. It had been in the basement since she bought it. This was the year it would be displayed. We didn’t buy each other presents because we had all that we needed. I started buying her six pair of socks every Christmas. Each would be wrapped separately and differently. The packages would then be placed in the tree. This way she had presents to open. Jadon always got a kick out of this. This year would be the same. I bought and wrapped socks at home, then took them to the ICU and placed them in the tree. Opening them would be good therapy for her. She was able to open only one of the packages on a good day. Shortly after Christmas, she developed a wound dehiscence, her wounds broke open. She was not tolerating the anti-rejection medications and her wounds would not heal. She had also developed severe leaking of her tricuspid valve. She was taken back to the OR to have her wounds cleaned out and reclosed. This was on a Tuesday. On Thursday of the same week, she collapsed her left lung and had to be taken back to the OR and her chest was opened again. This was the fourth time her chest had been opened in eight months. Fortunately, she only had a mucous plug. She was returned to the ICU and began bleeding from her rectum. She was taken to the GI lab on Friday and the bleeding was controlled. It appeared that the bleeding was caused by ischemia of the large intestine. Her heart wasn’t pumping enough blood to her body and the lack of oxygen to her colon caused a sores and those sores were bleeding. This was a grave finding. Surgery was scheduled for Tuesday of the next week to repair or replace her tricuspid valve but she was not recovering from the previous week and the surgery was cancelled. I was not disappointed. I

believe that if the valve could have been repaired she had a chance to recover. If the valve was replaced, her heart would never recover. She had to have some leakage for her heart to tolerate the strain. I don’t believe she would have survived the surgery with a fully competent valve. The New Year did not bring a celebration and it was not a happy one. The birthday and Christmas balloons were no longer a symbol of happiness but a reminder of how long it had been and how little progress was being made. Connie was still on a feeding tube and getting dialysis. She was not recovering from her recent procedures. She still couldn’t talk and could barely move her extremities. She had developed pressure sores in spite of the constant care. She had been moved to a room with a Hoyer lift so she could be up in a chair but this was painful for her. She still required medication to support her heart while getting dialysis. The obvious question to me then was what quality of life was she going to have. After six weeks she was still in the ICU with no sign of getting out. My optimism was disappearing. My starting date for work in Wisconsin Rapids was January third. I had to drive to the cabin the night before in able to be at work by seven am every day. Work would finish between six and seven each day. I would arrive home between 6:30 and 7:00 after my shifts, sometimes later. I worked two or three days in a row with a day off, then two or three more. My contract obligated me to work at least one hundred and twenty hours per month. On occasion I would have to drive up for only one shift in the middle of my week off. One hundred and seventy five miles is a long commute. It was too late to cook after work so I would prepare several meals prior to leaving for the cabin. That way I would only have to warm up my dinner at night. I packed a lunch to eat on the run while at work. No time was allotted for breaks or meals. At times, medical decisions for Connie had to be made by phone while I was at work. Twice I had to leave work on an emergent basis. A call was made to the ICU daily so I could monitor her progress. On the last shift of the week I would pack up the car in preparation for the trip home after work. Travel back and forth was complicated by snow several times. The drive could be tenuous. I usually arrived back home between nine and ten pm. There were times when I went straight to the hospital. If things had been stable that week, I would go home. The ICU didn’t want me to be there that late at night. Arriving home, I usually had a week off. This routine would occur for the next several weeks.

There was no progress being made over the next several weeks. Therapy was continued along with dialysis but she was still too weak to move and required blood pressure support. I was only there half of the time because of work. I would always hope to see some improvement when I got home again but it was never to be. We tried to make her existence as bearable as possible. The TV was put on her favorite stations or on a music channel of her liking. I brought in a CD player and ten CDs. She listened to Rod Stewart a lot. She always liked Rod Stewart and saw him in concert once. I arrived home on February fifteenth around nine thirty tired after several long shifts. This was Thursday night. Connie’s nieces were coming from Michigan to visit with her over the weekend. They were excited to see her and talked about getting her into a chair and rolling her through the ICU to get her out of the room. I went to bed that night planning to get up early to go to the hospital. A phone call woke me around seven the next morning. It was the nurse taking care of Connie. She lost her blood pressure around three am and had to be started on multiple drips and re-intubated. ECMO (extracorporeal membrane oxygenation) was being considered. This means she was being put back on the heart and lung bypass machine indefinitely. My initial reaction was “if this started at three o’clock, why in the hell am I just now getting a phone call?” Although this is what I was thinking, I didn’t say anything. I threw some clothes on and drove to the hospital. The surgeon that did her LVAD was on call and we discussed alternatives. I knew Connie and I had the discussion about no heroics at the end but I needed to try one last thing; ECMO. She was taken to the OR for insertion of the device. I called Michael and told him he had to come to the hospital immediately. He made arrangements at work and came to be with his mother.

Michael and I were there when she returned from surgery. While she was being positioned in the room I was talking to the surgeon. At that time, Connie lost her blood pressure and it appeared to be over. The surgeon’s words to me were “This is obviously not going to end well.” With tears on my cheeks, I expressed my understanding. That was at two o’clock in the afternoon. I sent Michael to get Jadon out of school immediately. Jadon is with his mother on Friday and Michael called to get her permission to take Jadon out of school and to the hospital. She agreed and I only hoped they would make it back before Connie passed. I sent word to her nieces that they needed to come immediately, hoping they could make it before things got worse. It was almost a miracle when Connie’s pressure stabilized and things looked better for the moment. She was on the ventilator, multiple drips supporting her heart at high rates and ECMO. Her pressure was stable throughout the afternoon. Michael, Jadon and I were with her into the evening. It was early in the evening when Jadon’s mom arrived at the hospital insisting that Jadon leave with her. The nurses expressed the gravity of the situation and told her that Connie had only hours to live. His mom would have no part of it and called the police trying to get Michael arrested. Since this was a domestic dispute, no arrest was made but the officer was very threatening to Michael. Michael said Jadon was staying and if it meant he was getting arrested, so be it. Another, understanding officer stepped in and told Michael that Jadon could stay. He couldn’t take him away from his grandmother under these circumstances. After making a scene in the ICU waiting area she was escorted out of the building. We all spent the night in the room with Connie. It was a long and uncomfortable night. Things were stable in the morning so Michael and Jadon went home to feed the dog and let him out. Jadon’s mom was waiting for them in front of the house. She blocked the driveway so they couldn’t get out to return to the hospital. They got into my truck parked in the street and she blocked the truck in. Michael was upset and got out of the truck yelling at her. He went into the house to let me know what was going on and stated he would be there as soon as possible. He went to the back door to let the dog out one more time and stepped on to the deck outside the back door. As he did so he heard yelling. When he looked up he saw eight members of a swat team with rifles pointed at him. He was told to put his hands up and not move. If he moved he would be shot. He was handcuffed, arrested and taken to the police station where he was informed Jadon’s mom stated he pulled a gun from his right pocket and pointed it at her. She was able to describe the gun because she knew what kind and color it was from before. Michael is left handed and had his concealed weapon in his left pocket. Jadon was taken from Michael and Michael was able to post bail and return to the hospital. Friends came to the hospital around noon on Saturday to say hi and to see how she was progressing. Both of them planned a friendly visit to check on her. They had no idea the visit would turn out to be a goodbye visit. Neither of them stayed long and left so family could be alone with her. Connie’s nieces arrived from Michigan to be with her. As the day progressed Connie’s leg was growing into a sausage. She had developed compartment syndrome and would require a fasciotomy to save her leg. Her pressure continued to drop and the support medications were being increased to above recommended doses to support her. There were indicators being followed and she was deteriorating at a rapid rate. I called for a meeting with the intensivist on duty and the family. The meeting was at two pm. I went over everything that was happening with the intensivist and he agreed with what I said. I wanted to be certain all family members present understood that there was no hope and we were only prolonging the inevitable. All questions were answered and we all agreed to stop all support. Each family member got a last visit with her alone, I went last. While camping in Wentzville, Missouri in August of 1993, Connie wanted to go to Red Lobster for dinner on our Silver Anniversary. On the way there, Rod Stewart’s song “Have I Told You Lately That I Love You” played on the radio and I sang it to her as I was driving. Sitting at her bedside with tears

running down my cheeks, holding and kissing her hand, I sang that song to her one last time with a crackly voice and sometimes a whisper. I told her how sorry I was that things turned out so badly. I told her that I would love her forever and she would be forever in my heart. With family in the room holding her hands, the drips were stopped. Then ECMO was turned off. Then the ventilator was stopped. It took only a few minutes for her blood pressure to drop and her heart to slow down. All the staff left the room leaving only family. We watched the monitor as her heart rate became slower and slower until it beat one last time. Her heart beat for the last time at 3:00 pm. We stayed with her for a while longer to cherish the last few minutes. Upon leaving the room, I told the nurse she expired at 3:00 pm and that time is recorded on her death certificate. I pronounced my wife of nearly fifty years deceased on February 17th, 2018.

We gathered the few personal belongings that remained and left for home. This was a Saturday afternoon so I called the clinic rather than HR and told them I would not be in for at least three weeks. I then called the office of Human Resources and left a message on a recorder that I wanted to be called back. I turned in my notice effective immediately. I was tired, worn out and didn’t want to return to work at any level. I was obligated to give a ninety day notice but this was waived. Connie had a funeral home picked out so we contacted them and made arrangements to meet. She didn’t want a sad funeral, but rather a celebration of her life. She wanted funny stories and a happy time. I don’t recall what happened the rest of that day. I was numb, my brain was not functioning. Just before noon on Sunday, Jadon called and asked how his grandma was. That broke my heart. I had to tell him I was sorry but his grandma died at three the previous afternoon and that is why we felt it so important for him to be there. In the past, at work, I have had to tell families that their loved one passed. I have told parents that their child had cancer. This was always with great sorrow and emotion. But I have never done anything this difficult before. I picked up Jadon in a parking lot a short time later and met him half way to the car. His mom said she was afraid of Michael and would not leave Jadon with him. We hugged and I told him how sorry I was. But that will never be enough. His mom was told that Connie had hours to live and she caused a scene. She had Michael arrested. I understand she hates us, but there is such a thing as decency. To take him away from us at that time is inexcusable. We have been deprived of that moment forever and there is nothing that can be done to give it back. You can hate me, but don’t use me as an excuse to deprive your son. The charges against Michael were found not to have merit and they were dropped. The arresting officer when Michael was arrested didn’t believe her story but he had to follow procedure because the accusation involved a gun. Her celebration of life was held on February twenty seventh. It took that long to have her ashes to put in her urn. It was an unstructured event. Simple, the way she wanted it. Shawn and Fran, her nieces, picked out pictures and put them on poster boards. Her favorite songs were recorded and played in the background. Food trays of lunchmeat, cheese and fruit were available. Skinny Pop, her favorite popcorn, was on the table. The line of people was across the room and out the door all night, she touched the hearts of many. “Remember when” stories were told and tears along with laughter filled the room. Flowers filled the front of the room. I surrounded her urn with the same three portraits of her that hung on my wall when I was in Vietnam. The evening went well. I think I met her desires and that she would be happy. All I ever wanted to do was make her happy. The official cause of death is listed as sepsis. The antirejection medications made it impossible for her wounds to heal. Her body could not fight off infection. The medications had to be continued, however, to prevent rejection of her new heart. This scenario was her worst fear. It’s almost as though she had a premonition.

The real cause of death is diabetes. That’s what caused her heart disease. Neither her mother nor her father had a heart problem. Her cholesterol was always in good control. Although she did not exercise, she was always active. She never smoked a cigarette in her life. Diabetes was her only risk factor for heart disease. The weeks when I was working at the clinic included days off in the winter with idle time. I spent that time painting the inside of the cabin. The laundry room and bathroom were painted a medium green. The hall was painted a blue gray, the living room a lighter brown. The same blue gray was planned for the guest bedroom, but I never got that far. I laid out plans for a wood burning stove including a ceramic hearth pad and outside air supply. My hope was for her to be able to sit by the fire and warm herself when she got cold. We had hoped to move there someday when she was more stable. I was planning for our future. But these things she would never realize. She would never see the painted walls. She would never be warmed by the fire. I can only daydream about her being there physically to be warmed by a fire, and hope she is there spiritually.

I had not seen my mother in over a year and a half. Mother doesn’t travel far anymore and Connie had been too ill to travel. I flew to Florida to visit with her for two weeks. There were projects to be done that I usually enjoy doing but my heart was not in to them and my head was not screwed on straight then. We agreed that they should wait for another time. We took a couple road trips but there was nothing planned. She had fallen just before I arrived and was walking about a hundred yards with a cane when I arrived. We took daily walks and she was able to walk a half mile without a cane by the time I left. Shortly after arriving home, the VA called. The position I had been waiting for was available and they wanted to know when I could start work. I told them I had recently retired and would not be accepting the position. I tried to get a position at the VA for several years and, now that I retired, the position was mine. I would have enjoyed the opportunity to work with other veterans. August tenth was a difficult day. It would have been our golden anniversary. I lost Connie less than six months before our special day. Family members were all supportive and always are. It’s good to have family. I wrote a poem to commemorate this day. During the last three years that I worked, I had to leave work on an emergent basis several times. The position can’t be left without coverage and coworkers were always there to step in and help out. I was asked several times to accommodate changes in their schedule, but, unfortunately, there was almost always a conflict in my schedule. With all the appointments, and everything else going on, I was not often able to reciprocate and cover shifts for them. A simple thank you does not express my appreciation for all their help.

Although Connie was taken too soon and I will miss her forever, I also understand how lucky I am to have been with my soulmate for over fifty years. I look around me and see so many people that never found the level of affection that Connie and I had. I hear a spouse proclaim that they are excited for a night out away from their spouse. We never felt that way. Connie was always welcome to come with me wherever I went, and I was happy to have her with me. She went hunting and fishing with me on occasion, and we had great stories to tell about those times. I often went to the casino not because I wanted to go to the casino, but because I wanted to be with her. I never felt the need to be away from her and she never expressed this to me. We did things to make the other happy and did not expect anything in return. Making her happy always made me happy. This has the potential to be abused, but it never was. The last morning before she passed, a hand print was made of her left hand. I have that print in a plastic folder to protect it. Putting my hand on her hand print is the closest thing I have to holding her

hand. I do this every day while looking at her picture and telling her I love her. She told me many times toward the end that if anything happened to her, she wanted me to find a new relationship, and do things that made me happy. I have had a couple of offers for a relationship, but I am not ready. I don’t know if I will ever be. I am doing things I enjoy, but I can’t say I am enjoying my life. I hope that someday I can find happiness again; that would make her happy.