This will be a long story about my husband. It is not my story to tell. At least that is how I have always felt. My husband would tell me to tell his story to anyone, especially if it could help so that no one ever has to go through what he endured. Knowing he had no problem with me telling his story does not make me feel more comfortable telling it, so I will try to censor what I write while keeping the main detail in. I will tell you this is a long story even with the censoring. I will tell of what happened trying to leave out his emotions.
I think most that have read this assume that my husband’s illness was cancer. I am always vague as I write about it. I know if I read my writings I would think he had cancer. He did not have cancer. I am going to start with his previous health issues that in the end helped lead to his death, but had he not gotten his illness, he would probably still be alive. The illness is something anyone can catch, so if you want to skip the first part to get to the illness that is understandable. If reading about illnesses bothers you, you might want to skip the whole post.
Let me start with this. He was born with a heart defect. At the time, there were no surgeries to fix it, most babies died from it. For those who lived, which were few, at the time little was known about it. He lived a full life with little effects from the abnormality, he had occasional tachycardia, which is basically a fast heart beat, but medication kept it under control most of the time. Nine years ago he became ill with pneumonia or at least that was the diagnosis at the local hospital on admission. Because he had some symptoms from his heart, a cardiologist was sent in. That is the first time we met a doctor who actually knew a little about the defect. He advised us that we should go to a large university hospital about 30 miles from home, as they had doctors that specialized in heart defects. He also told us the only cure for my husband’s heart which was beginning to weaken, was a heart transplant.
After going to these specialists, which there were a team of, we found out so much information that we had not known about the defect. While it was true the only cure was a heart transplant, that would only be necessary should his heart become to weak or enlarged to pump on its own. Though this was a large hospital with many patients that traveled from around the world to see these doctors, they only had three patients that had what my husband had. None was as old as my husband, who was not that old. As well as none that had gone as long as he had without serious complications. Many tests were run. Medications changed to keep the heart healthy. A defibrillator was implanted in 2006, at that point he was told his heart was growing weaker and he could no longer work. He liked working, he was a boss. He like being in control of the workplace. After he stopped working, his life did not end, rather we had time to enjoy things we had previously skipped over, as we had both been working. I stopped working too as now my husband needed me a little more. After the defibrillator was implanted his heart grew a little stronger, but was still weak. He had tests done to see where he was on a scale of needing a transplant. He was pretty close, but with proper care and medication the hope was that he would be able to avoid having one, at least put it off as long as possible. Things became somewhat normal.
This is where the illness starts. In January of 2012. my husband told me his foot hurt. I looked at it there was no redness, it looked fine and we both thought he must have bumped it on something to cause it to hurt. Upon awakening the next morning, he told me he was in unbearable pain, I looked at it and he now had a bump on his foot. Still thinking he probably bumped it, but knowing the importance of his health, we went to his family doctor (they are now called Primary Care, but I will refer to him as family doctor) who is not affiliated with the university hospital. His family doctor sent him for X-Rays. He called shortly after we returned home to say that something looked wrong and he had pulled strings with a local orthopedic surgeon to see him the next day. At the orthopedic surgeons office we were told all the bones had blown out in his foot, a broken foot. A hard cast was placed on his foot and we were told not to travel. A good thing, as we had planned to travel the next day. This was on a Friday.
On Sunday night, my husband had the chills. I took his temperature several times, but no fever. He had been in bed most of the day. He was having a hard time moving his leg with the cast on it. In the middle of the night he woke me and asked if I could move his foot as it hurt. When I did, I could feel he was warm. Now he had 104.7 temperature. He did not want to go to the ER, so we waited until the doctor opened early in the morning. At the doctor’s office he still had the same temp. but his blood pressure was 44/29. This was so low the doctor wanted an ambulance to take him less than a half mile to the local hospital. My husband said he was able to go by car. When we got to the ER, they were waiting for him with a wheel chair and helped him in, rushed him to a cardiac emergency room. One doctor took me aside to ask my husbands medical conditions, medications, etc. Another took my husband aside to ask him basic questions, such as what his name was, what year it was. While we were talking to the doctors they were drawing blood and starting IV’s and administering medications. While I was talking to the cardiologist that was questioning me, I asked if he could call a certain cardiologist at the university hospital as I thought that doctor would want him at the university hospital. The look of relief on the cardiologist face when he called and was told to have him brought there right away was one I will not forget. He thought he was dealing with heart problems and it was out of his league. I will be forever grateful to the doctor at the university hospital that said for my husband to be transported there. In the mean time, my husband got done with his questions and I went to sit with him. He told me something odd happened, he knew all the answers to the questions asked but he was not sure they were right. While we waited for the ambulance, which was not long, my husband quickly faded, he soon thought we had just put a man on the moon, that Kennedy was President, the year was 1968. The ambulance came and he was rushed to the ICU (it was still called that at the time) on the cardiac floor of the hospital.
Within minutes they removed the cast on his foot. The foot was infected. A wound care specialist that is not normally in the hospital at that time happened to be there. He is one of their best. He immediately took my husband who by now was delirious and had no idea who anyone was to surgery to clean out the foot. When he returned, he asked me to get the X-Rays from the local doctor as something did not look right. I was very worried but I remember him telling me that if all went well, after several more cleanings of the foot, he would rebuild it. He then added if we were lucky. I was too worried and stressed to ask what he meant. I would soon find out. I went home and slept as by this time it was very late. I woke early and got his X-Rays. When I arrived back at the hospital, they took one look at the X-Rays and said “this probably changes everything”. Once again, I did not ask what they meant. My husband’s mind was back to normal and he felt better. He was worried but okay for the most part.
Then the call came from the local hospital. He had MRSA. Now everything really did change. The only thing I knew about it was that mainly healthy people get it, but I also knew most people have it on their skin but it rarely enters the blood to cause problems. Now I knew why the doctor seeing the X-Ray had said it changed everything, as it appeared to be a serious infection of the bone, not just from the cast. My husband was already on an antibiotic that kills MRSA, so they were still on plan to do more cleanings. My husband arrived there on a Monday, by Sunday he was on his third or fourth cleaning. When he arrived back to the room, he told me when he woke up from the anesthesia one of the doctors mentioned amputation. I told him it must be the medication and he was confused. He was not. Shortly after the doctor came to talk to me (and my husband) about the need for immediate amputation of his foot. We were told if the MRSA traveled to his defibrillator, it would have to be removed and he would not survive that surgery. The amputation needed to be done the next day. I trusted the doctors I knew, but I had yet to get to know this doctor, so I told him not so fast, I needed to check with others. I happen to be lucky to know doctors at some of the top hospitals in the country. Some are relatives. Upon calling the first to say what had happened the response was “this was what we expected”. Everyone agreed the amputation was needed.
I want to stop talking about his illness for one moment. There is a stigma attached to MRSA. People, friends are afraid of catching it. They start to disappear from your life. My husband understood their fears. I did too. In fact I was afraid of catching it from him. I was told the chance was small, if at all. Besides that, the hospital puts a yellow warning on the door with a yellow cart of supplies beside it. No one is to enter the room without putting on the isolation gear. It must be removed before leaving the room. This is to keep others safe. I also would like to point out that my husband could have done nothing to have caught this disease. The disease does not discriminate. For those who think the cast was the reason for the MRSA, it may have been but it is unlikely to have been. As mentioned it is on our skin, any cut or tear in the skin allows it in, most times it can be dealt with easily, others that are more progressive need more serious treatments. It is estimated that 70% of the medical community have it colonized in their noses. This does not mean they have the disease or will spread it, it just shows how prevalent the disease actually is. Now, back to his reflection in the mirror.
After the calls and before the surgery, I also found out that one of the top infectious disease doctors was currently at this hospital, he was doing research and though his program was full, he had decided to take my husband in as part of it, the research was to kill MRSA so it would not return as it often does. Everyone agreed how lucky we were that this had happened at this hospital. The surgery was performed. I waited and worried. He pulled through fine. He had no pain, no phantom feelings. A man came to see him, he acted like he knew my husband, after talking for a while, he said “I forgot to introduce myself” and then he lifted his pant legs. He was a double amputee. He wanted to show my husband that life can go on, it does not have to end because of a loss of a limb. He used no cane or crutch to walk. He also explained not everyone has the same results, that most need a cane. This really improved my husband’s spirit. It did not last long. Since the top doctor for MRSA was very knowledgeable, he knew it would travel through my husband’s body. He knew how it would travel. After the surgery and the next two days they performed tests to see if any infection had gotten on the defibrillator.
On the second day, I heard the words I did not want to. It had spread and the defibrillator had to come out. How, I asked, if he were not going to survive? I asked to speak with my husband’s main cardiologist who was nowhere near the hospital. He came within fifteen minutes to sit and talk with me. He never pulled punches, telling what needed to be done, I appreciated that in him. He told me my husband did not have a good chance of surviving the surgery, but without it he would definitely die. He had a chance of surviving was the best he could offer, he told me. He also said it needed to be done immediately. I knew he was one of, if not the best, so I trusted him. That night a surgeon came in to explain the surgery. She pulled no punches either. Telling how dangerous the surgery was, that she had lost 2 patients, but not directly from the surgery. I was told by someone later she has one of the best records for this surgery, most have deaths associated with the surgery. Making matters more complicated was my husband’s heart defect.
The next morning, even though most surgeries are not performed on that day, the doctor we saw the previous night had assembled a group of surgeons that also specialized in the removal. Things went smoothly and she was happy to inform me after the surgery that none of the infection had gotten to his heart, as that would have been fatal. Once again, we were back in the room, tests were still being performed as they knew where it might travel. Two days later my husband complained to me before any of the Fellows or Doctors came in that he could not see right. I immediately got the doctor. After a quick exam, a retina specialist was brought to the room. After examination, we were told his retina had become detached as the MRSA had gotten into his eye. Injections of antibiotics were put in his eye and for two days they came every day to examine it. It was not helping, now my husband needed retina surgery to re-attach the retina.
This MRSA was spreading so quick, everyone was worried. The specialist who was doing research was not the infectious disease doctor that came to the room each day, he just was kept informed while informing her. My husband started to experience pain in the hip of his other leg. More tests. His femur had broken and MRSA was in the break, not in the bone but in the space between. My husband had stopped wanting to eat by this point, he was refusing to sit up or have any physical therapy. He was becoming weaker by the moment. One night when I decided to go home to sleep upon returning the next morning there was a crash cart in front of his room. Everyone was rushing in and out. To say I was scared and worried is an understatement. It ended up not being anything serious, the telemetry showed him as flat-lining. Not one machine, but three. This was because of the heart defect, it was picking up the information wrong. But the femur was still of concern. As mentioned he had many teams of doctors. More than half the teams wanted to hold off on the surgery, while the others wanted it to be performed immediately. The doctor that would be performing the surgery did not want to at that point either. My husband had grown so weak. Though we knew the antibiotics would not reach the MRSA in between the bone we did know by keeping him on the right antibiotic it would most likely not spread anymore. The decision on if he should have the surgery was placed with me. After asking many questions, I felt my husband needed to get stronger before anything else was done. Maybe the medication would get in between the bone and cure it, but if it did not it would not kill him. Plus he would be monitored for any changes in his blood. It had been three months since he first arrived at the hospital. Now he was going to a rehab facility, a fancy name for a nursing home even though he was still young and we associate nursing home with the elderly. He would be there for at least a month we were told. Again, he would be in isolation. Which to him was fine, no other patients in his room.
I will not get into the rehab or much that took place during that month. He continued getting the antibiotic. He was doing better. After the month and a quick stay overnight at the local hospital for a blood transfusion, he was able to come home. The fourth day he was home he had an appointment with infectious disease. I drove him, he was examined and blood was drawn for tests. MRSA tests take up to five days to come back whether negative or positive. Three nights after the appointment, a Sunday night at 11:30, his doctor called. We had become friends so she felt comfortable calling at that time. The MRSA and tests that showed how it was spreading were bad, I needed to get him back to the ER at the university hospital immediately. He had been home seven days and now had to go back to the hospital. When the surgeon opened up where his femur was broken, she told me she had never seen so much infection before. The top of the femur was removed. Normally something could be put in to help walk when he began rehab for walking. Because he had MRSA and in the future it would be history of MRSA, he could not have any metal put into his leg. The first thing MRSA does is search for metal. So now he had severe pain from this missing part of his leg. The remaining part of the femur would eventually move up and rub against the hip-joint with any movement causing worse pain. Another month in the hospital then back to a rehab facility.
While I sat with him in rehab facility, I noticed he twitched, was confused, sweating while the air conditioner was set so cold even nurses put on sweaters under their isolation gowns before entering his room. He was not himself. I called infectious disease, she arranged for an ambulance to bring him to her office. She saw it right away too. Another ambulance took him from her office to ER, even though it was walking distance, time was important she felt. CT scans, MRI, so many tests I do not even remember them all. Nothing could be found in the ER so he was admitted. The cardiologist noticed something and had a Doppler Ultrasound brought to his room. He was in type 2 hyperthyroidism, very far in. A new doctor was added, an endocrinologist. Steroids were started to cool off the thyroid. At this point his body started to attack itself. It no longer knew what was healthy and what was not. We did not know this at the time, we just knew he was in hyperthyroidism. In addition many of the medications used to keep him alive were also taking their toll and if possible they were being changed. More time in the hospital, more time in rehab. He got out of rehab fittingly on July 4th. Independence Day.
Only, there would be no independence. While he had gotten stronger he still had a long way to go. He was out of the hospital for two weeks when he went into renal failure. Back into the hospital for a few days. Now he needed new doctors. Nephrologist and urologist. More appointments with more doctors. At this point we were going to at least 3 different doctor appointments a week. All on different days. After seeing his orthopedic surgeon and being told he could have his prosthetic leg made, we now had a orthopedist and a prosthetist. More doctors, more appointments. He still had an oil bubble in his eye holding the retina in place. When it was put in, it was put in with the knowledge that a cataract would grow. When the oil bubble would be removed, they would remove the cataract. So now we had a retina specialist and a cataract specialist. Since he had been put on prednisone, the cataract had started to grow and seeing became harder, so the surgery to remove it was scheduled. It had to be canceled because he was in the hospital with another ailment when the surgery was to take place. This surgery was scheduled and canceled many times. I have to say the doctor was very patient through all this, he was world renown, patients waited months to see him, yet each time it was thought it would be safe to have the surgery he would cancel other appointments for a surgery that would last about 3 hours. The cataract specialist would be able to get in and out fast it was the retina that now had scar tissue under that had to be scraped out and another bubble would have to be put in. As I said, the body was attacking itself.
He was in and out of the hospital for his heart often towards the end of 2012 and throughout 2013 and 2014. The cardiologists were surprised at how well his heart had held up through this all they told me in 2012. At first it was planned to insert another defibrillator at the end of 2012, but after the surgery on his femur and his risk of getting MRSA again seemed higher it was decided he would have to live without one, as he could not possibly survive having another implanted only to have it removed. While he was in and out for his heart, it was generally nothing serious with the heart. There were other hospitalizations for other issues, renal failure, urinary tract infections, other ailments and in January 2014 the flu.
He went for physical therapy to learn to walk with his prosthesis. On his second appointment he was able to walk about 30+ feet, sit a moment and walk again. He like the therapy. This brought another new doctor, actually two, as they were needed to help him up. He was getting stronger. He was happy. He thought he would drive again soon. Then he got a wound on his foot. No more therapy. Now it was back to the wound specialist. This would become something that happened often, getting wounds that would not heal. Many thought from all the things wrong with him he was a diabetic, but he was not. In fact his sugar was remarkably low for someone who ate so many sweets.
But it was not just the heart. His thyroid had cooled off, so it was decided to taper the prednisone. That is when the episodes of confusion and delirium started. Now, a neurologist was brought in. I asked him not to give up on my husband and write it off as something easy, like early onset dementia, which his MRI showed but I knew from the doctors it was not dementia rather because of the heart defect his brain had not gotten enough oxygen and was affected, getting smaller. He never did. He agreed it was not dementia. He ran countless tests. At this point we had no idea what it could be. The neurologist thought he knew immediately as his symptoms fit three diseases. All tests came back negative for those diseases. At this point, we were sent to a memory specialist, another type of neurologist. The two doctors put their heads together and found he had an auto-immune disease. It was a post traumatic stress disease. This is when the realization that his body could not tell good cells from bad cells was discovered. One of the first signs was the hyperthyroidism. The good news was it responded to prednisone, the bad news, the prednisone was weakening his already weak bones. This was not diagnosed until August of 2013. He lived his life in his head. He could not tell reality from reality TV, or if he were reading something, it became his reality. He thought he could walk, that he still had his leg. It must have been so hard on him to go from such a sharp mind to one of confusion. Sometimes he was unaware of the confusion, the times he was aware of it were very scary times for him. While it was hard on me to deal with this, I cannot for one moment imagine the demons he faced with this disorder.
Before a medication could be found to try to help with the auto immune disorder, he was back in the hospital for congestive heart failure, his body had filled with fluid. He lost 25 pounds in 2 days after IV’s of diuretics. He was already on a pill form, but he needed more. After he had lost what appeared to be all the extra fluid, the cardiologists wanted to perform a cardiac catheterization. He did not want this. I asked him if he wanted to return in a week or two for more hospitalization because he had not gotten all the fluid off. At that point he agreed to it. All was fine the doctor was actually happy that his heart still seemed to have not taken a bad hit from all that had happened. He was released from the hospital.
He woke the next morning, telling me he was cold. I took his temperature, 104.7 again. Another ambulance ride for him to the hospital. First diagnosis, septic shock. The next after the blood cultures had time to grow, MRSA had returned. More antibiotics, though he took a maintenance one, he needed stronger ones. He was allowed to go home and I administered the IV’s. I had done this for his UTI and some other infections he had gotten. Once again he went into renal failure. The medications had to be changed. By October 2013 the MRSA was gone, but as we were always told, it has to be at least a year before you are considered cured and you can always get it again. This last time the MRSA was not as aggressive. The first bout with it the doctors said the DNA of the MRSA was one of the most aggressive they had seen. Talking with some doctors from other hospitals, I was told with the first bout he would not have survived at any other hospital.
The end of 2013 held more hospital stays. It was decided he needed another doctor, a same day heart failure doctor. He would administer an IV of diuretics once a week so that my husband did not have to be hospitalized as often. A drug had been found after several failed ones, that worked with his episodes of confusion. It was not a cure-all, he still had episodes, but not as many, he remained on the prednisone and was going to start tapering off at the end on 2014. As mentioned January 1st 2014 started off with my husband being brought by ambulance once again. He was in heart failure, lung failure, as well as other things. The first thing they did was test him for the flu in ICU. He had the flu vaccine. He also had the flu. He had another 2 stays in the hospital in January. At this point his heart was failing and we knew it was just a matter of time.
For those wondering why he did not have a heart transplant at this time, it is a complex reason, but to put it simply, he would not have survived the surgery most likely, but also he could not rehabilitate. To give a heart to someone they must be able to rehabilitate. The need for organ transplants is high, I completely agree with how it is decided who gets an organ. If someone was in need and could do the physical therapy needed, etc., it makes sense they should be given the heart. As for artificial hearts/pumps, they contain metal, had they tried to put one on him, he probably would not survive surgery, but if he did, he would have MRSA again and the heart/pump would need to be removed. He had a chance at recovering somewhat, with any of the above he would have died sooner rather than later. I am not trying to make this complex, but if I were reading it I would be thinking, why did they not do a heart transplant? I wanted to explain.
At a visit to the same day heart failure clinic in March, my husband asked the doctor how long he had left. The doctor told him six months to two years. Some depended on my husband. He was only allowed 1.5 liters of water, which is about a small bottle and a half a day. This was hard for him. He drank water all the time. The neurologist explained the water was affecting his mind too. His brain was swelling from the water increasing his confusion. At the Hospice Home I would learn it is common for those dying to want to drink a lot of water. They said it was sad they did not drink anything with nutrients. All thy wanted was water. But I am getting ahead of myself here.
In June he fell at home. I called the ambulance. I was prepared for the long drive to the hospital, following them. They told us he did not have to go, they checked him over a little and he seemed fine. They said if he wanted to go they would take him, if not he could always call back and they would take him. He decided not to go. A week later he had not moved from his hospital bed at home. I could not help him sit, I canceled many appointments. I decided he needed to go to the ER. They looked him over, took X-Rays and other tests. Nothing broken, so they sent him home by ambulance. The following week he still could not move without severe pain. I called his cardiologist. He told me if I had him brought in, I would have to agree to send him to rehab when he was done at the hospital. He said though I had taken great care of him, he needed therapy to get stronger. I asked my husband, he agreed he needed the therapy and while he wanted to be home, he told me he knew it would be for the best. Little did we know that would be the beginning of the end.
The doctor found large pockets of fluid on him from the falls. Tests showed they were not infections. Tests also showed his heart was at its end. When the doctor mentioned palliative care, I thought he meant nursing home. I should have expected different from the tears in his eyes as he talked and that he sent a pastor to talk with me. When I met with the people who set it up, they told me he would have to go to a Hospice Home. I knew what hospice was. It is not always for those who are near death. I did not know what the Hospice Home was. It was a place that was like someone’s home where your loved ones are taken care of till they die. People are rarely sent there if they are expected to live longer then two weeks. My husband was there one week. During that week, we laughed, we joked, we made the most of each moment. Some times he was out of it, while others he slept all day. But he was given excellent care. Care I would not have been able to give alone, He was not in pain and he had only a little fear. There was no MRSA in his body. When he died after one week, I went into shock. But this is not about me. It is about my husband.. He would want to warn people to be sure to have anything looked at that was not normal. To stay ahead with your health. To live life to the fullest.
To close this I will add, we had some of the best doctors and nurses. We became friends with all of them. They were always so kind, giving cell phones numbers, checking to see how everything was going if we were not at the clinics or hospital for a week, meeting for a snack while we were at the clinics. Everyone was kind and compassionate. When my husband was moved to the Hospice Home, most everyone I had contact with messaged me. I could tell they had written these, as I had gotten to know them so well. Even if they had asked someone else to message me, it still would have been kind, but they did not, they wrote from their hearts to me. I do not think many do this. So my advice would be if you have to be at the hospital, try to treat the doctors, nurses, nurses aids, all involved with health care as you would want to be treated. I am sure they appreciate it. I know I appreciated all of them. I also know some of these friendships will continue in my life. It is not often we see so much compassion. I am extremely grateful for all everyone did to keep my husband alive as long as they were able to. I am also grateful that I felt I was dealing with equals, friends. If you have this happen do not take it for granted. There are many patients and caregivers just looking for someone to listen. These people, my friends, all went above and beyond just listening. I will forever remember the kindness shown.