Damon and I met in 1989 and fell in love instantly. We were both young teenagers so we went our separate ways but got together, exclusively in 1996. He was my soulmate. We did everything together. We had two kids together. He was diagnosed with end stage liver disease in 2015. When he was first diagnosed, I spent countless hours researching everything that I could find out that would help me take care of him better. I found some wonderful liver disease support groups during this time that would turn out to be so very beneficial.
The cause of Damon’s liver disease was alcoholic cirrhosis. Damon had quit drinking about a week before his diagnosis. He had tried to quit in the months prior to by going to different inpatient rehab facilities but none of them were the right fit for him. He finally found one that worked and after he completed a 40 day inpatient program, he came home. He was excited about slowing the progression of the disease by continuing to remain sober.
He saw his first gastroenterologist about his liver disease in October 2015. This doctor told him that since he had stopped drinking then the liver would most likely repair itself. I inquired about the ultrasound done in August and the fact that it showed scarring of the liver. The doctor assured me that the liver is the only organ in the body that has the unique ability to repair itself and can still function when the majority of it is damaged. He made a six month follow up appointment. When Damon went back to see him, he had started to develop ascites and cellulitis. At this time, his current gastroenterologist told Damon that his liver disease was in the end stage, which is what I questioned during our first office visit, but that there was nothing else that this doctor could do for him. He told him to go immediately to our state’s only transplant hospital and go to the ER and request to see the transplant doctor. We did this and they admitted Damon for ascites and cellulitis and said they would set him up to be evaluated for transplant in the months to come.
He spent the next phase, going through all the testing. He passed all the tests, had all the doctors sign off, lost weight, and even had teeth extracted. However, he could not physically handle going to three AA meetings a week. He went to one a week. He was physically deteriorating and had frequent bouts with hepatic encephalopathy. At this stage in his disease, he was unable to get the doctor to prescribe him medication for adequate pain relief and his insurance wouldn’t cover the prescription for Xifaxan. I begged the social worker on the transplant team to please work with him, on more than one occasion. His last drink was August 3rd, 2015 and he started the pre-transplant evaluation process in September of 2016. I asked the social worker on the transplant team, if the hospital would do blood or urine tests but she wouldn’t budge. So, after all that time, money, and energy had been placed into getting Damon evaluated for the list, he received a letter in the mail stating that he was no longer being considered to be placed on the transplant list at their hospital but was free to try another transplant hospital. He was upset but just saw it as another setback.
After a few months, he decided to go see a gastroenterologist at a different hospital. This doctor told him that his liver had gone from decompensated to compensated and that he wouldn’t even need a transplant at this point. He was so happy. The doctor even said Damon was healthy enough to have his 4 hernias repaired. The ascites had caused the hernias. He found a surgeon that was on board, as well. The surgeon did, however, warn Damon that there was always a chance that this surgery could push his liver back over to the decompensated side. But Damon was in such misery with the hernias and he wanted them repaired to improve his quality of life, so he gave the surgeon the go ahead. That was on his birthday last year, July 19th, 2017.
Within a week, Damon had his first bout with spontaneous bacterial peritonitis. He got better for a couple months but then in December of 2017, it began a downward decline in his health. At this point, he had chosen a different hospital to seek care at. He was in and out of the hospital with sepsis and the doctors told me at the end of January 2018, that nothing else could be done so I should just put him on Hospice, make him comfortable, and let him go. Damon went home from the hospital on Hospice at home care. We were told by a Palliative Care Doctor that Damon would be able to enjoy his final days, celebrating his life, surrounded by family, and enjoying life relatively pain free. This doctor told me that people who are expected to only live 6 months or less are placed on hospice so that they can get the most out of their final days of life. But, told me that Damon likely had less than four weeks to live. So I wanted nothing more than to celebrate Damon’s life with family and friends and to help him get the best care available.
Right off the bat, we had terrible problems with the hospice agency that the hospital sent Damon home with. When the intake nurse came out, we naturally had questions about their services. She was very dismissive and said that if we weren't ready to make this commitment then we could just call her back when we were ready because the intake process was lengthy and she was not going to waste her time doing it if we were just going to revocate services in a few weeks anyway. We went ahead and signed the papers. The next day, a nurse came out the house. I was told before Damon got discharged from the hospital, by a representative of hospice, that I needed to make sure that the doctors sent Damon home with enough pain medication for the next 72 hours and then a nurse would be able to come out and prescribe more pain medication. So I made sure that Damon got his prescription before we left the hospital.
When the nurse came out, she said that the doctor would not be prescribing anymore pain medication at this time. Damon was sent home on Fentanyl patches and Roxicodone. Damon had already strongly expressed to the doctor at the hospital that he did not like the Fentanyl patches and just wanted to be placed on his regular dose of Roxicodone that he was managing well with until the opioid laws in our state restricted his access to. The Palliative Care doctor assured me that hospice had much more freedoms on what they could prescribe and Damon would be able to tell them what worked best for him and also be allowed to try different drugs besides Fentanyl for long lasting pain relief. Instead, the nurse did not want to hear anything Damon had to say about pain relief and it was obvious that she had not even read Damon’s chart before she arrived in our home. She told me that for Damon’s pain, I should change his Fentanyl patch, even though it wasn't time to change and that I should cut another patch in half and put it on Damon. This had him face-diving into the wall, all night and by early morning I had to call the nurse on call for help. She told me that the other nurse should have never told me to cut a transdermal Fentanyl patch in half because there is no way of knowing how much medication would be delivered that way. She told me to take them off immediately. I was also told that there would be a “comfort package” that would arrive within 3-4 days through Fed-Ex that would have emergency medication in it if needed.This package did not arrive until 2 weeks after admission into hospice and Damon had episodes that the medication in that package were designed to treat. When the package finally came, it was missing the liquid morphine.
Damon went on to have an even more inhumane experience with this hospice agency. When he began to fill up with ascites fluid, they told him to first double his diuretics, then a few days after that was not working, they told him to triple this medication. I sensed a red flag because I was told by a doctor before that once the ascites fluid is already retained, the diuretics will not effectively draw the fluid off. It is more for prevention of the fluid so I felt that the nurse and doctor were trying to get Damon’s kidneys to shut down. This agency then agreed to allow Damon to go to the hospital for a paracentesis because he was having trouble breathing or moving. I also made sure that he kept his appointment with his pain doctor so that he could get the prescription of Roxicodone that hospice was denying him. They had kept him on the Fentanyl patches and kept increasing the dose and added liquid morphine and kept going up on the dose. But those things were not helping to control his pain. The next time he needed to be drained, the nurse told me that hospice would not pay to have another paracentesis performed because it was much too costly at something like $20,000 she said. I knew that was inaccurate also. I found out that the agency that the hospital sent Damon home with, was a for-profit hospice agency and obviously looking to cut costs.
Damon began to fill up with fluid in his lungs, which had never happened and the nurse called me outside our home to speak to me one day and said, “it won’t be long now. I just wanted you to get prepared.” My husband was at that point in excruciating pain. It had been a month since he was admitted into hospice and I feel that they were trying every way they knew how to hasten his death. I called them up one day and they informed me that they would no longer be prescribing anymore of his medications, not even his nausea medication, unless he agreed to go to their inpatient treatment facility so that they could try to get his pain under control. My husband stated that he did not want to go to an inpatient facility and that was the whole reason he chose home hospice so that he could pass away at home, surrounded by loved ones. The agency would not change their minds. They said it was either this or nothing. Me and Damon believed that this was their final attempt to get him into their facility so that they would be able to give him whatever drugs they wanted to in order to make him pass away. Damon stated that he wanted to fire this agency and go back to the hospital where he could at least get drained. We fired hospice at the end of February 2018.
I ended up feeling compelled to turn this agency over to the state because I didn’t want this to happen to anyone else. I was able to be with Damon the entire time he was on hospice and the nurse did not so much as check his vitals without me sitting right beside Damon but I knew there were patients out there who would not have a loved one that could sit with them or who did not understand what the nurse was doing from a medical standpoint. I got a letter back from the state saying that they conducted a surprise inspection and that they found the agency to be in violation of federal code. The letter went on to say that by me contacting them, I was potentially responsible for improving the care of others.
Damon wanted his story to help others in a positive way. During this month with hospice, even though he was treated so inhumanely, we were able to celebrate Damon’s life with all of his loved ones and all of his friends. We had numerous get togethers and made the most of every day. After we fired hospice, Damon found a wonderful new gastroenterologist who agreed that Damon needed to be drained and began to make sure that ever time he needed to have a paracentesis done, I could call into the office and get it scheduled. It worked good for a couple of months, until Damon began to fill up faster than the appointments could be scheduled for him.
In April, Damon started to not feel well again. His stomach was hurting the way it did when he had peritonitis so I took him back to the hospital where he was admitted. At that point, I got to see the Palliative Care doctor again who had told me in January, what a wonderful, compassionate, final act of love it would be for me to agree to place Damon on hospice. I very passionately told him of the horror that Damon endured while he was under their care for one month. I explained that they did not control his pain, they would not give him the pain medication that he already knew would help him, they agreed to drain him once but then said he would die by drowning in his ascites fluid, they tried to hasten his death, and all the other horrendous acts of incompetence that they performed while in charge of his care.
I expressed my concern over the fact that my husband’s pain doctor was limited on what he could prescribe my husband because of our state’s new opioid restrictions. I said my husband is dying and he still cannot get the pain medication that he needs in order to enjoy the rest of his days to the fullest. I told the doctor that it feels like my husband was not getting the same medical treatment or the same prescriptions that someone with cancer would be getting. I said it felt like he was being discriminated against because he was dying from liver disease. The Palliative Care doctor said that it is not just me feeling this way but it was in fact, a reality. He said that the American Medical Board allows physicians to prescribe any and all medications to patients who are dying with cancer but limit what they can prescribe to patients who are dying from liver disease. I also explained our frustration about having to wait until he was full of ascites fluid to be able to get an appointment for paracentesis.
The Pallative Care doctor listened to my concerns and came back with a better plan of care for Damon. He found a loophole in our state’s opioid restrictions that allowed patients who are classified as palliative care patients or end of life patients, to have no restrictions on the amount of pain medication prescribed. He also spoke to the Interventional Radiologist doctor and asked
that Damon be placed on the schedule for twice a week, every week so that he would be drained before the fluid makes it unbearable. Damon’s blood work didn’t show immediate signs of infection so the palliative care doctor deemed Damon’s visit and admission to the hospital as likely due to patient and caregiver frustration.
It wasn’t long, however, until Damon was back in the hospital again. This time, I had to call an ambulance in May because he was unresponsive. He was placed on a ventilator and I was told that he most likely wouldn’t wake up and if he did, he would have brain damage. He was septic again, had a UTI, pneumonia in one lung, and MRSA in his nose. I refused to give up on him. I kept talking to him and telling him that he needed to keep fighting so we could go fishing and eat hot wings together again. The whites of Damon’s eyes looked like egg yolks. They decided to give him Propofol to make sure that he remained in a medically induced coma to allow his body to rest. They also placed a feeding tube down his throat but never used it. I voiced my concerns about him not eating or drinking for days but was told that he would be alright for now and that was the least of his concerns. He had dropped down to 130 lbs. He had been weighing around 160-170 lbs with the fluid. They also placed a temporary peritoneal drain tube in at this time.
After a few days like this, they decided that they were going to turn off sedation and see what would happen. I began doing minor stimuli to try to make him come around. I started to tickle his ear with my long hair because he would always get the chills and hated that feeling so I figured if anything was going to work, it would be that. And, sure enough, he began to slightly wrinkle his eyelid and eyebrow. As the hours past, I kept on. He started to faintly jerk his neck in the direction of the part of his body that was touched. Eventually, his eyelids fluttered, until finally, he opened them. He was obviously very upset and confused as to why he was tied down to the bed and why he had all the tubes down his nose and mouth. I would ask him questions and he would nod his head or he would give me a very familiar expression and I could tell exactly what he was thinking or trying to say. I had proof that he was still the same Damon. However, it had taken too long for them to wake him and he became very agitated and tried to get his arms up to the tubes so they ended up having to put him back under for another night.
When he woke up the next day, they took the tubes out and he started to talk. I was so happy. I told him how scared I was and how the doctors said he would probably not wake up. He told me not to listen to what the doctors say because they are not the ones in control. He told me that God would call him Home when He was ready for him and not a minute sooner. Damon went on to dramatically improve over the weekend. His legs were so weak from being in a medically induced coma for five days and physical therapy wasn't coming to see him. So, he had me and his sister get on each side of him and hold him up while he walked in place to gain his strength. He kept insisting that he walk down the hall and I kept telling him that he was too weak for that, but when he got something in his head, he was doing it. So, Damon had me stand on one side of him as he made his way down the hall of the hospital. Then the charge nurse stopped him and told him to get back to his room before he fell. By that time, his legs were really wobbly.
By Monday, the Palliative care doctor came in and said that he could go home and they would just leave the temporary drain tube in because they didn't feel that coming into the hospital for twice weekly drainings had been effective since he was only able to stay out of the hospital for one month. Damon didn't want a drain tube. He had already had a doctor place one in him against his wishes back in December and it got infected within two days of home health coming out and trying to show me how I would begin to do it. But he was ready to go home after being on a ventilator and being tied down to the bed. The nurse took too long with his discharge paperwork and he told me to give him the keys to the car. I said you haven't walked but a few steps down the hall in a week. He insisted, so I gave him the keys and I looked out the window of the hospital and to my surprise, there he goes, walking to the car, eating a bag of cheezits. My Dad had predicted that Damon would walk out of the hospital and to everyone’s amazement, he did. As one of the other doctors was working on Damon’s discharge paperwork, I started to ask him questions about the illnesses that had landed Damon in the hospital this time. The doctor said, he is a very sick man and he will be lucky to survive another week, so do you want him to go home or not?
Damon went home and was back within a couple of weeks for dehydration because it was so hard to manage draining 2-4 liters of fluid off of him everyday and trying to keep him hydrated. He had the drain tube in for a month this time but it kept coming out and leaking all over him and everywhere. His quality of life was diminishing. Eventually, the drain tube got infected and he was septic again with MRSA, this time in his belly and in his blood. They had to give him so much Vancomycin, and several other antibiotics that his kidneys began to take a hit. His Creatinine was 2.60 and his WBC got up to 40. They got a Nephrologist on his case and they began to give Damon albumin infusions every eight hours.It took a while, but Damon bounced back again. Always so happy to be alive and saying that God would take him Home when it was his time.
During this hospital admission, The Palliative Care doctor was concerned that the cause of Damon’s kidney troubles was possibly Hepatorenal Syndrome. He told me that it was likely a combination of that, plus the antibiotics. He had apparently wrote in his notes that if Damon came back in with kidney issues again, then this would mean that it was truly the end and they would not treat him anymore. This was not discussed with me. Also, during this hospital admission, the Palliative care doctor spoke with Damon about how he was on a journey and how he was towards the end of his journey now. Damon said that he understood but that he wanted to fight to live and stay here with his family and be here for his kids.
After this hospital discharge on July 2nd, I felt like God spoke to me and told me to have Damon’s medical records sent over to Methodist Transplant Institute in Memphis and everything else would fall into place. I did this and called Methodist to check status every few days. Damon went on to have another infection and he was in such bad shape that I had to call an ambulance again. When I got to the hospital, the Palliative care doctor said that he had also said last time, that if he came back within a short amount of time again, he wasn't going to treat Damon. I said I just sent his records over to Methodist and they have received them and are working on getting him an appointment. The Palliative care doctor said I was giving him false hope and that approval for transplant would likely take six months and Damon did not have six months left. I begged him to treat him for the infection. He agreed and said we needed to get an answer from Methodist STAT.
Damon went for his first appointment to see Dr. Nair on August 10th 2018. Dr. Nair told Damon that he could save his life with a liver transplant and that he would be a good candidate. He also couldn't believe that so many times, the doctors had given up on Damon and told me to just make him comfortable and let him go. Damon left the hospital there with a sense of renewed hope. He got to go to the Bass Pro Shop in Memphis and that was the first time that he had been to a Bass Pro. He got a t-shirt and a hat as a souvenir. He went home and developed another infection. I tried to get him transferred to Methodist but the hospital at our state said that he wasn't stable enough at first and then they said that they were treating the infection and Methodist wouldn't do anything differently so insurance wouldn't pay to have him transferred since it wasn't a medical emergency. Damon was discharged from our state’s hospital on August 18th, Damon had an appointment to see Dr. Nair at Methodist on August 21st and we were to do transplant education classes on August 22nd. We made it there and it just so happens that August 21st was our 19th year wedding anniversary. We were put up in a fancy hotel and we were able to eat a steak dinner for supper. We were having the most fun that we had had in a very long time. The next day, we attended the classes and did some pre-transplant evaluation testing and then we were told that Damon would be admitted into the hospital because his Hematocrit was critically low at 6.2. Damon received a blood transfusion but the doctors said that it didn't change his numbers. So, they gave him two more bags of blood. They were going to do an EGD and heart cath but decided to just do the heart cath since that would get him closer to the transplant list. He passed the test and they decided since he had to lie flat til 10pm, that they would just discharge him in the morning.
Morning came and Damon was excited about getting out of the hospital and he was excited about all the new progress that was made to get him closer to getting on the transplant list. He wanted to walk down Beale Street before we left because he never had before. And, he wanted to find the best barbecue in Memphis. We walked down Beale Street and we found a place called Rum Boogie Cafe and they had some great ribs. We stopped in a shop and he got a couple of souvenirs. Then we swung by the Bass Pro Shop in Memphis again where Damon found himself a jacket on clearance that he had been needing for the upcoming winter days. The day after we got back, Damon grilled pineapple for the kids.
The following day was Monday and he always got drained on Mondays and Thursdays. He went and had paracentesis done like usual and had his blood pressure checked several times before discharge. All the Interventional Radiology staff members were just as excited as we were about the possibility of Damon getting a transplant. He had his favorite nurse that day. We left and went and had lunch and when we were going to the pharmacy to get a bandage and his medication, he told me that everything went black and he couldn't see. I told him that I would take him home and then come back and finish this up while he rested. When I pulled into the driveway, I went around to unlock the door and help Damon out of the car. But, he fell back into the car and passed out. I called 911 and when they got there, they said his blood pressure was 50/30. The doctors tried to give him medicine to bring his blood pressure up. But they told me it didn't look good and wanted to know how far I wanted to take this. I said that Damon’s wishes were that everything be done in an effort to save his life. They had to intubate him and then he coded for 35 minutes. They did chest compression and got his heart beat back but he continued to decline. I had to make the decision to make him a DNR then because he had started to bleed from all over. The doctors said that he was bleeding from somewhere and his Hematocrit was 5 now. His blood was not clotting.
On August 28th, 2018, Damon went Home to be with Jesus. He fought a long hard battle. He never gave up. He always wanted to be on the go and when he got the proper pain medication and had his symptoms managed, he was able to enjoy life. He loved people and he never met a stranger. He loved to talk to people. He loved The Lord and he had a desire to share his love of The Lord with others. He made videos during the last couple months of his life, encouraging everyone to go get saved. He also made a video declaring that he drew his strength from the Bible and from his Heavenly Father above. Damon always wanted his story to help others. When he found out that people all over the world in the liver disease groups were drawing strength and encouragement from his journey, he was so thrilled. He began to tell his family and friends that he was known worldwide. He was happy to know that he could make a difference in the lives of others. I know that Damon would want me to continue to share his story and let it positively impact the lives of others.
