On January 12, 2011 Jonas was admitted to the hospital again. They admitted him for severe swelling, fatigue, and a continual high bilirubin count. This hospital stay was different though...he actually seemed to be doing better after a few days and we left feeling hopeful. That didn't seem to happen at the end of very many hospital stays. He started seeing a physical therapist during this visit which seemed to help him a lot. When he was discharged on January 16th we set up appointments to continue with the physical therapy. He had started to feel so much better and the bilirubin count was coming down. On our way home from the hospital he wanted to visit all the guys at work. It was so good for him to go there and visit with his co-workers. He had been home from work since mid November and it made him feel so good physically and mentally to go out and be able to visit people. He was even feeling good enough to ask if there was work that he could do at home. It was a very positive day.
A few days later Joe heard from his boss at work and because of legal issues with Jonas being on short term disability he was not able to do any work from home. I think hearing that news was really hard on him. He felt so useless at home and was going crazy with not being able to do anything all day but watch movies and sleep. He had finally started to feel better and he desperately wanted to work. But Joe was a fighter. He did his physical therapy exercises every day and never gave up hope that he was going to get better.
On January 28th we got some more positive news. His liver doctor had found a stone blocking one of his bile ducts and thought they maybe it was the stone causing the bilirubin to stay in his body. His hope was to remove the stone and then have the bilirubin free to leave his body. Dr. Hutson was excited, Jonas was excited, I was excited, it was a really good day! On the way home from that appointment we talked about how in a few months Jonas would be feeling so much better and would be back to work and back to his "normal" life. We were feeling so hopeful and so happy on that drive home. The next day Jonas went in to have the stone removed. I waited in the room with Joe's mom and when they brought Jonas back in from the procedure the first thing he said to me was, "there was nothing there." I thought he was joking. I said, "you're kidding" with a smile on my face. He said in a very sad voice...."there was nothing there, they found nothing". I just looked at Kathy and we didn't know what to think. I don't think we understood what he was saying. Then the doctor walked in and told us that when they went in with their scope they had found nothing. Sometimes MRI's can show artifacts or "ghost" images on the film. What Dr. Hutson had seen on the MRI was one of those artifacts. There was no stone to remove. There would be no bilirubin leaving Joe's system. There would no getting healthy in the next few months and moving on with our life together. It was a heartbreaking and frustrating day. We were devastated. Joe felt defeated.
Things really went downhill after that day. Jonas had become very depressed and spent most of his time sleeping. I don't know if it was the sadness that kept him asleep or that his body was dying and God knew he wouldn't be able to deal with that. Either way, it ended up being a huge blessing that he spent his last three weeks sleeping most of the day.
On February 14th Dr. Hutson fit Jonas into his schedule to see him in clinic because of how poorly he was feeling. I was helping at Sam's Valentines party in school so Joe's mom and my mom took him to his appointment. I knew he would be admitted to the hospital because he had become so much worse in the past two weeks.
Notes from Dr. Hutson's report of his visit with Jonas on February 14, 2011:
"Jonas returns today for follow up of an autoimmune induced cholangiopathy (a disease of the bile ducts). He is being treated with IV Solu-Medrol for the last eight weeks and cyclosporine was added two weeks ago. He has continued to have a downhill course. Over the last several days, he is no longer able to walk on his own volition. He has nausea and is unable to eat. He has been having abdominal distension and his ascites is worse. His energy has been very low and every time he eats, his stomach feels more bloated. He has not been having any fever or chills at home, but he has become quite lethargic and his wife states that he has become confused at times as well."
"Jaundice most likely caused by an autoimmune cholangiopathy with destruction of the bile ducts. He is currently on IV Solu-Medrol and cyclosporine in an effort to treat this condition. There are no similar patient reports available in the literature. He also has had a downhill course physically since he was last seen.
On the 15th Jonas ended up in ICU for 24 hours because of a paracentesis procedure they had done to try and drain some of the fluid in his body. He developed a site bleed which they had a hard time getting stopped. They ended up replacing 2 units FFP, 1 unit platelets, and 4 units PRBC transfusion. That was a ton of blood! What is so frustrating about this is that I didn't even know it was happening! No one ever called me! I got a call from my sister in laws mom who works in the pharmacy at the U of U Hospital. She was calling to see why Jonas had been moved to the ICU and she wanted to make sure I knew he was there. Well, I had no idea! I was so glad she had called and told me. I was so upset and thinking about it right now is actually making me ticked off. I, of course, didn't say anything to the doctors. I am not a confrontational person and just told the doctor it was ok when he apologized for not being able to reach me. He said he a tried and had a wrong number (whatever) but, thinking about it now I should have yelled really loud at him and made a big fuss about it. That was horrible of them to not let me know that my husband was needing a blood transfusion and was in the ICU. I am ticked!
On Thursday February 17th Joe's team of doctors came in and told us that they had done everything they could but felt that in order for Jonas to get better he would need a liver transplant. They also said that he would not be able to get a liver transplant unless they could determine if he did or did not have the M. Kansasii infection. If he still had the infection he would not be a candidate for a transplant. I remember hearing what they were saying and looking at them every now and then but I was mainly focused on Jonas and what he was doing. At this point he was very confused and wasn't really aware of what the doctors were saying. He had a build up of (something that I can't remember the name) in his blood stream that was causing his confusion. I remember watching Jonas try and open a straw and put it in his cup. It was so hard for him to do and I was so worried about him and why he couldn't do such a simple thing. I don't think what the doctors were telling me really sunk in.
On Friday Joe's doctors told us they would like us to meet with the Palliative Care team. Now, I guess I was the confused one at this point because before the doctor mentioned palliative care he was talking about physical therapy and seeing if Jonas would qualify for the rehab program. Then he started talking about palliative care. So when the palliative care representative came in and started telling us about what they do and when we could set up his appointment we (me, Jonas, Kathy, Denny, & Melissa) were all a little shocked. This is what palliative care is:
Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illnesses. It is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.
Palliative care is provided by a team of doctors, nurses, and other specialists who work together with a patient's other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.
She started talking about what decisions we would need to be making if Jonas became worse and what his wishes would be. I think we were all speechless. We thought he would be getting physical therapy and she was talking about what Joe's wishes would be if he were to get worse...
We initially set up the meeting for the next day which was Saturday, but I called back that night and told her we wanted to change in until Tuesday, February 22nd (since Monday was a holiday) she said that would be fine. There was no hurry.
So we got through the weekend and Monday with not much change. Jonas was usually asleep when I was there. I think it was on Friday that I told Jonas what the doctors had said about his liver. I tried to make him understand so that he would knew what we were up against. I told him he needed the liver transplant or he wouldn't make it. He said "OK". But thats all that was said. We talked about how he would get stronger with physical therapy and that hopefully he could get the transplant. We still had hope. There was no talk of death or "what if's". In fact, we had never in our entire marriage talked about death. It was just something that Jonas couldn't talk about. It was too hard for him to think about let alone talk about. I left Monday night thinking I would be back the next afternoon to talk to the Palliative Care team. We would talk about what they would do to make him stronger and what tests they would do to determine if he still had the lung infection. We were going to discuss if Jonas should be moved to a Skilled Nursing Facility until he got strong enough to come home. But none of that took place. I wish I would have never left the hospital that night. I wish I would have stayed there all night holding his hand telling him that I love him.
Our last picture together...taken on February 18, 2011
