I had dinner last night with two former coworkers who I am happy to say are now friends. It’s interesting because as we sat there catching up and telling each other of the strange twists and turns our lives have taken over the past year, I realized that no matter how happy each of us appear, what often brings us closer to each other is the fact that we’re all in pain to some degree. Some of us have deep-rooted pain from a long ago tragedy. Some of us feel the pain of thinking we’re all alone with no one to understand what it is we’re trying to cope with. Some of us may be embarrassed to reveal our pain for fear others may brush it off or make light of it. But honestly, no one’s pain is any less than the next persons. We can’t judge what someone else is feeling, we can only acknowledge it and try to understand. And while my friends and I each revealed bits and pieces of our pain please don’t think that was the focus of our evening. It surely wasn’t. Along with the few tears that were shed, there was much laughter. And noise. And fun. And Mi Nidito’s Mexican food. And a Michelada here and a Sangria there.
Last night's little adventure and relaying to my friends the recent twists and turns my life has taken (albeit Readers Digest version) has made me feel the need to tell the story of what happened to Al here in this forum.
I warn you, this is EXTREMELY long, EXTREMELY personal, and perhaps a little tedious to read. But I need to write this. I need to document it somewhere so I never lose these memories and the sequence of events. I'm sure I may have lost a few details or mixed a few things up here and there but I'm trying hard to be as accurate as I can. Again, I NEED to do this. So here goes.
Over the past 10 years, Al’s health was starting to decline somewhat. It started years and years ago with various sports injuries and many laparoscopic knee surgeries. (OMG, random memory from the Al joke file. Before he ever had his knees replaced he used to tell everyone he’d had five knee surgeries. Two on his left knee, two on his right knee and one on his weenie….(vasectomy).) He had little to no meniscus in either knee, resulting in terrible arthritis and eventually two full knee replacements, a torn rotator cuff which resulted in surgery, a broken hand with a metal pin installed, a disc problem in his back, diabetes and things I’m sure I’m forgetting. The man had a very high tolerance for pain but was living in so much constant pain for the past 8-10 years. The pain made working very difficult too. Al began self medicating to ease the pain by drinking a little more and taking Tylenol to excess. When I say excess, I’m talking 10-12 500mg capsules every day throughout the day and night. I know we were somewhat stupid because neither of us really realized the harm in doing that. In addition, Al always drank. Since I met him over 32years ago, he was always the guy with the beer in his hand. I never realized it but now I see that he would be considered a functioning alcoholic.
Well for many months Al had been having a lot of pain and discomfort in his abdomen. He didn’t enjoy eating anymore and always felt full. He’d already been diagnosed with Barrett’s esophagus a year or so prior and had some problems with vomiting blood. He pretty much stopped eating and I began forcing him to drink Ensure and a daily fruit smoothie with protein powder just to get some nutrients in him. Finally we got what we thought was a diagnosis that would solve the problem. He was told he needed to have his gallbladder removed. So tests were ordered and we met with the surgeon who would remove his gallbladder. During that appointment the surgeon turned to us and said, “I can’t do surgery to remove your gallbladder. You have cirrhosis of the liver.” We were stunned. The date was January 29, 2010. He explained that if you looked at cirrhosis severity as a level A, B or C with C being the worst, Al was at a B level. The surgeon scheduled a procedure called paracentesis for Al to have fluid removed that was building up in his abdomen. They basically use a long needle guided by some form of x-ray or scan and insert the needle in the belly and let the fluid drain. On Feb. 12, he had 3.2 liters of fluid “tapped” from his abdomen as an outpatient procedure. This gave him some relief for a short time. Over the next week, his belly started to swell again and Al was becoming very lethargic and was in a lot of discomfort. I was so alarmed by his overall well-being that I convinced him to go to the Emergency Room on Sunday, Feb. 21. He was immediately admitted to the hospital and the craziness began. After a consult with a gastroenterologist and the original surgeon who was to do the gallbladder surgery, Al’s cirrhosis level was determined to actually be between a B and a C. Suddenly the gallbladder was no longer a concern. Surgery to remove it was too risky. The gastro doc wasn’t really giving us any answers and seemed to be downplaying the cirrhosis. We desperately needed some answers on what the future held and this doctor was not giving us anything. My daughter Alison and I finally tracked the doctor down where he was finishing a procedure and we ambushed him in the waiting room. We asked some hard questions and he finally told us Al had between 3-5 years left to live. OK, we can deal with this…at least we know.
On Feb 24 they removed another 5.5 liters of fluid from his belly. We were told he would be going home within a few days but we (Al’s family) knew that couldn’t possibly be the case. His vitals were all out of whack, his blood work was a mess and he was not well. On Feb 25 we had a different gastro doc come in and talk to us. By this time Al’s father and sister were here. This doctor told us very simply that of the patients in Al’s current condition, 50% of them die within the first year. While that was devastating news, at least it was honest. Again, they were preparing to have him go home within the next day or two if they could get him stabilized.
The next day when I came to see Al he told me that the gastro doctor had been in again and asked Al if he knew or realized what the prognosis was. Al told him yes, he understood that he had between 6 months and a year. He said the doctor kind of nodded and told Al they we would take it one day at a time. His blood pressure was way down, which made him very dizzy and the sodium levels in his blood needed to increase (different from sodium in the diet) and he was having difficulty urinating. Al and I started having conversations about what he wanted out of the next few months. He wanted to take me on a few day trips to show me some of his favorite hunting spots, beautiful areas in the mountains and desert. He wanted to take one last trip to the beach in Mexico, he wanted to move his annual golf trip with his high school buddies to Tucson instead of the planned Portland trip.
On March 2, his nurse told Al his numbers were looking good and there was a possibility he might go home. I reminded Al that the nephrologist (kidney specialist) told us the night before that he would be giving him some large doses of albumin over at least a six hour period today so I couldn’t imagine him going home today. Albumin acts like a magnet and pulls the fluid out of his system and into his bloodstream, which the kidney then pulls out and processes as urine. The hope was that this would get his kidneys functioning better. The nephrologist came in and confirmed that Al would not be going home. We were now looking at the 9th day of hospitalization.
We were told Al was not a current candidate for a liver transplant. Patients must meet a list of criteria – one of which is no alcohol use for at least 6 months. Al only stopped using alcohol when he was diagnosed on Jan 29 and then had 4 beers on Super Bowl Sunday so actually, he had only been alcohol free since Feb 7. Alison & I inquired about a living donor and were told the criteria was even more stringent for living donor transplantation. Al’s case manager told us he was “walking the line” between where doctors can try different drugs to help his condition and not being able to do anything further.
The doctors began discussing the possibility of doing a TIPS procedure (Transjugular Intrahepatic Portosystemic Shunt) which is a liver shunt. The shunt drains the fluids from the liver in to the blood stream which is then processed through the kidneys to eliminate the waste. Al’s kidneys were once again producing urine (a positive thing) however the TIPS is a surgical procedure and ANY surgical procedure was risky since Al was extremely prone to infection and bleeding. TIPS doesn’t “cure” anything but is designed to alleviate the discomfort of fluid buildup without having to do the paracentesis time after time.
I received a panicky phone call from Al on March 4 at 3AM. He told me he was scared that he was dying. He couldn’t breathe. I left the house and was at the hospital by 3:30AM. He was on oxygen, his breathing was very shallow, he was extremely weak and had a fever of 101.5. The staff began aggressively treating him, pumping fluids in him and quickly moved him to ICU. Al had an infection raging through his body and over the next day or two while he was in ICU, anyone entering his room had to gown up and wear gloves and masks.
On March 5, the nephrologist said Al’s creatinine levels had become slightly elevated again. Before the episode that put him in the ICU, his level had dropped down to a 1.8 (1.3 is a on the high end of the “normal” scale). We had been working on getting his level down to 1.2 to hopefully get him home. On March 5, his level was at 2.3. Another paracentesis was performed. In addition, because his liver wasn’t functioning, fluids were building up again and his bowels and kidneys stopped working which makes infection all the more likely.
I was told that it’s important to reevaluate Al’s condition every single day and to not focus on the little pieces of information that I’m given. It’s the overall picture that is important. How is Al feeling today? Is he sleeping most of the time? Is he becoming so uncomfortable with the procedures, medications and prodding that it’s unbearable?
Al was moved out of the ICU on March 7. We were told that Al would likely go home on that day. They talked about removing the catheters and the central line (IV in the chest/shoulder). The doctor wanted to see about removing additional fluid so another paracentesis was ordered. He had one done the day before where 4 liters of fluid was removed. But the radiologist didn't want to do another so soon. He felt it was too risky to do it so soon. The physical therapy team came in to evaluate. They needed Al to be able to roll to his side and sit up in bed and then get up with his walker and take a few steps. He needed to show them he could do this so they could feel confident he would be able to do the same at home. It was a real struggle. He really had a hard time doing what he needed to do without a LOT of assistance. He became very weak and his oxygen level dropped significantly. His blood pressure dropped and he became dizzy. After they left the case manager came in and said she had bad news.....he couldn't go home. In the state he was in, it would take 2-3 people to help him at home. So their next plan was to release him to a skilled nursing facility to gain some strength and still be taken care of medically. Then we got word that they in fact did want to do the paracentesis and they were once again considering the TIPS procedure (liver shunt) but it would all depend on his white blood cell count.
On March 10 my family and I met with a trusted physician (my former boss) who is an executive at the hospital I work for and is basically the “boss” of all the physicians when they are practicing medicine in the hospital. She was following Al’s case and was able to talk to us honestly and openly….something the doctors involved in Al’s case weren’t really doing. I also met with the main doctor in charge of Al’s care. Both agreed and said it made no sense to transfer Al to a skilled nursing facility (SNF) because it would begin a vicious cycle of being at the SNF and being taken daily to the hospital for paracentesis. We talked a bit about the TIPS procedure and she said that while his white cell count was down significantly, it was still high which means he still had an infection running through his body. She said there was a very high risk of further infection if the TIPS was done. I asked her if the shunt became infected, would they have to go back in and take it out. She explained that taking the shunt out wouldn’t be the issue, but that a resulting infection would very likely kill him. She also said that removing fluid every day was very risky and was keeping him in the hospital. And truth be told, it is VERY common to contract an infection in the hospital. This presented even more risk to Al. She left to go consult with the radiologist about the paracentesis. Not too long after, they took Al to radiology for the paracentesis where they removed 6.6 liters. 6.6, I couldn’t get over that number. In just THREE days, they removed almost 15 liters of fluid.
After the paracentesis, I became very concerned after learning how much fluid had accumulated overnight. The kids and I arranged to meet with my former boss (the physician) and the director of our hospice. My former boss explained what no one else had said. Each time a paracentesis was performed, the bad stuff was leaving the body but so was the good stuff; the proteins, the electrolytes, etc. By draining the fluids we weren’t allowing the natural process of having those electrolytes and proteins be cycled back in to his bloodstream where they could be absorbed and nourish his body. He was becoming extremely dehydrated. No amount of fluids entering his body either thru IV or mouth were doing their job to rehydrate because they were being pulled out through paracentesis therefore defeating the purpose of IV fluids completely. She talked about the SNF and reminded us that we need to continually look at the goal. Was Al going to get better? No. So what is the goal of a skilled nursing facility? Their goal is to improve the health of patients, to convalesce them to where they are able to recover from illness or an accident. The SNF’s goal didn’t match the goal for Al. Al would not improve or recover; he needed to be made comfortable. That left two options: 1) continued hospital stay with constant paracentesis which would likely result in an eventual bad situation; infection, bleeding, leakage to the point where the doctors would refuse to do the procedure any longer. Paracentesis was not pleasant and Al was in some pain afterward. And 2) hospice where they could make him comfortable and stop the invasive procedures and allow for some beautiful, peaceful time with all his family up to the end.
Later, Al and I talked privately about this and then had a hospice nurse and case manager come in and talk to us. This was so hard because up until that moment, I think Al believed that although he was very sick and had only a short time left with us, he expected to be able to go home at some point. He told them that he wanted to go home, that he wanted to die at home. Unfortunately that wasn’t possible. Al was receiving more oxygen than could be managed at home. He needed to be in inpatient hospice. The staff left and Al asked me to leave him for a bit so he could take it all in. As hard as it was, I gave him his privacy. What I didn’t know at the time was that he wanted me to leave so he could call his family and tell them he was dying and was going to hospice. He didn’t want me to have to do that. I also found out later that during those conversations, his concern wasn’t for himself but it was for me. He was worried about me and how I would get through this and how my life would change. Can you imagine? Facing the end of his life and his first thought was for me. I can’t even express how much I love him. I came back to his room about an hour later and he told me he was ready, to go ahead and bring back the hospice staff so he could sign the paperwork and get transferred. It was heartbreaking yet a relief. I knew my husband had suffered in silence for many, many years and the past three weeks were agonizing for him not only physically but mentally and emotionally. What I haven’t mentioned in this long post is the confusion that came along with his hospitalization and sickness. With cirrhosis, the toxins build up in the body and become poisonous and confusion sets in. When those toxins are released from the body, the confusion clears. During the first week of his hospitalization came a somewhat humorous bout of confusion. There was a package of bed pads next to his bed and he turned to me and said, “I told you to put those in the refrigerator. They’re going to spoil.” We went back and forth because I didn’t know what he was talking about. Finally he said to me, “The green corn tamales right here next to me, they’re going to spoil. Put them in the fridge.” We both laughed about it later when the confusion cleared. The periods of confusion came a few more times and were more evident the morning of his transfer to hospice. A few hours after signing for the transfer, he was loaded in to an ambulance and taken the quarter mile or so to hospice which is on the hospital campus. We got Al settled in his room in hospice and I hung out with him for a few hours. He was very, very tired and was receiving high doses of morphine to keep him comfortable. He told me to go home and get some rest, he’d be fine and I could come back in the morning. I hesitated but felt somewhat comfortable since we all thought Al would be there for a week, maybe two. There was time to spend with him, time to talk to him, time to reminisce with him, time to look at pictures with him. Just time to be with him. I went home and spent time with my daughter going through family pictures. We wanted to decorate his room with tons of photos and fill a photo album with pictures of our life so he could reflect on his life and enjoy the pictures. The next morning (Friday, March 12) my daughter, son-in-law and baby granddaughter went to see Al and spend a few hours with him. Upon their arrival, she called me and told me that her dad was different. He was in and out of consciousness and she was scared. I left right away and came to hospice. He was different. It was clear that he was in the process of dying. I spoke with the hospice director whom I know quite well and she told me that she didn’t think he’d make it through the weekend. We were shocked. How did this happen? Just the day before he was himself, he was still talking to us and telling us he loved us. I can only say that he was ready and he could no longer fight what was happening. He had turned his body over from science to nature. Family was called and they were already on their way from California to be with us and help Al leave this world.
