Back home

We have been home for 3 weeks now and have had some of the ups and downs adjusting to being here. We were thrilled to get to our house, sleep in our bed, play with our grand kids, and see our friends here. However getting things set up for medical care, blood draws, transfusions proved to be challenging. Added to that were some of the things dealing with getting our house running again. We had "suspended" our cable, phone and internet only to find that they charged us for not returning the equipment. Then Tim needed a transfusion and the blood bank could not find a match for him. They had several units of his blood type but his body is making two antibodies that made cross typing almost impossible. We thought we would have to make an early morning trip to Seattle, but got the call the night before that they found one. The next morning we got a call from Seattle saying that he was making blood again. Today we went back to Seattle for a follow up with the blood specialist and it looks like things are tracking toward normal. This is good news. I am back at work and finding it rewarding and exhausting. I am so behind. Tim is on his own and doing quite well. In fact he told Patsy the night before I went back that he "was ready for Judy to go back to work". He must be, on Monday I came home to a clean kitchen, vacuumed house and fresh coffee. I think I will keep him around, maybe the 200,000 dollar liver was worth it after all.
Thank you all who have been reading, sending good thoughts and prayers our way. We have a ways to go, but with your support we are getting there

What a baby brings

We have been enjoying having Andrea and Lily here with us. Lily is getting to know her grandparents and it is so much fun to see Tim light up when he holds her. I was hoping to get a video of him singing to her, like he did when our daughters were just babies. He looks 20 years younger when he does that. Sarah's girls saw a photo I posted of Tim holding Lily and told the mom that "Grandpa doesn't look sick anymore, are they coming home?" She was right,he does not look sick. This week Bella came with Sarah to bring Andrea and Lily back and it felt so good to hug her and hear her voice. Apparently the day before she told her sisters one too many times that she was going to see Grandma and Grandpa. Their response, "WE KNOW, WE KNOW". Lily can be fussy and lets us know when she is unhappy, but she can be very content and loves to be snuggled, bounced, or fatoodled, a term my Grandmother used to describe how my dad would jiggle us on his knee. Mostly she bring a new perspective on living. The saying "today is the first day of the rest of your life" gives everyone the chance to start new. Even when we have an old body.

I love to be with my babies', babies, I love seeing the pride and joy I had as a parent, in my daughters as they watch their children. It is the mix of awe and agony that comes with parenting. It is a pearl of great worth that comes from a constant irritation, as you try to keep your sanity.

Taking an aggressive approach

This has been another long week. The Hemotology doctors have done their best and have decided that the best approach to his anemia by increasing the amount of predinosone - steroids that he is taking. They did the marrow biopsy, and the good news is that the marrow was producing new blood cells, just at a suppressed rate. We do know that he still is producing an antibody that is killing off his blood cells, just at a slower rate. The goal of the steroids is to stop his body from producing the antibody. We have spent the last several days testing, transfusions and tomorrow morning we start again. There are some times we just get tired of being there. That seems to be when we meet someone that is going through the things we are, but they do not have the same prognosis. We know we have a very good chance of beating this and being home, maybe even before the end of the month. Some patients do not get good news. Every day people struggle with some event, usually they are small things, but they can feel huge. We like to plan our lives and live them in nice neat units. Andrea and I were talking about this, the desire to have perfection in our living. We always strive for it, and really, it would be foolish to want chaos in our lives, but what is perfection? Growing up I told my daughters that they did not have to be perfect, that perfection was boring, and believe me, they took my word for it. I do not regret telling them that, because it is looking for the positive in the ups and downs in our living that makes the unexpected some of the rich experiences we have. It is after all, a matter of perspective. When we complain of not having enough to meet our needs, we only need to look at the homeless among us. Yes some are there through choices, and others because of a twist. When we are upset by a bad cold or the 24 hr flu, we only have to visit the hospital. When you are in the hospital tired of the pokes, prods, and endless tests, you only have to see a family with a child that is doing this and yet they know what waits for them. So for us it is hard, and it has been a long week, and the aggressive approach does mean Tim could get moody, hallucinate, get nauseated, be super sensitive to touch or light, but it also means that it give him a better chance of getting home and putting much of this behind him. That is really a pretty positive outcome.

Oh one more thing, Tim says if you feel compelled you can send money or stronger drugs, and he hopes maybe for a pleasant hallucination if he has one. Good to see the steroids have not blocked his sense of humor.

Two months since the Liver Tansplant

Saturday Tim will be one week without a blood transfusion, his Red Blood Cell count is holding at 28, his white blood cell went down some what. That is a bit of a concern. We go in again on Monday to check and see if he needs a fluids top off!

We are loving having Andrea and Lily here. She is 5 weeks old and she feels so very tiny.

Hope everyone in Washington is safe and dry. Whatcom county has had several mud slides to go with their floods. It makes it easier to understand why the Transplant Team wants people to be close to the hospital when you get a transplant.

Lily comes to visit Grandpa, Grandma and Aunt Leah

Today Lily and Andrea flew in from San Diego. She is testing our grandparent skills, we still have a few. We have been looking forward to this for quite a while. We all had to smile at Leah who is not sure of how to hold a baby. We will send more photos and more information tomorrow after Tim gets another blood draw.

Its good to have new life in our home.

Back at the apartment

Yesterday was a bit rough, I got the 24 hr flu, realistically food poisoning. So I was only with Tim for about 2 hrs. Today though was good news, the hematologist said his WBC count was up. It one week ago it was 80 when it should have been 1500. Today it was at 600. His rbc count was a bit down from 30 to 28, but they worry when it is 23. So if on Friday his rbc is close to 25 they feel that he will be able to get past this phase without Steroid treatment, but it might mean more transfusions. So now we are in a waiting game, but the really good thing is that Tim came back to the apartment tonight. After another week in the hospital, it feels sometimes like we have spent as much time in hospitals as out since the 28th of August. Tim is still uncomfortable but things have started moving in his intestines. Ok that is maybe more information than some of you want, but really I leave the gross stuff out. So now we are back together and on our own until Thursday when Andrea and Lily come to visit. Lily is 5 weeks old and we will get to see her for the first time.

What happens when you just don't want to eat?

After 10 hours of blood transfusions Friday night and Saturday morning, Tim was exhausted.
Today the goal is to void, walk, and eat. They are counting his calories, keeping tack of his fluids intake and output.
He is voiding after the nurse came in and said they were going to cath him. He negotiated to drink more water and void into the container so they could measure it. The problems have been that he is not having any solid movement and his stomach is hurting. That makes food unappealing and he is not eating. The only really good news today is that his blood levels are up, 30 today. I got him some chocolate boost, the hospital only has strawberry ensure, this is a easy way to get some calories. Dr Dick came in and asked him how much he is walking and gave him some boxes to check off each time he walks, we have one left to go tonight then I will let him get some sleep. We had hoped things would be better today. He is not exhausted but moving, eating, breathing, it all hurts. He is 10 pounds heavier today than yesterday. Some of that is blood, the rest is fluid retention and any solids he has not passed. They are working on getting everything moving again, so if they are successful tonight he will be feeling much better tomorrow.

Back at the hospital; Good Liver, Bad Blood.

It has been quite a while since I have blogged. For the last several weeks it has been hard. Tim has been getting good reports on his liver function, but he has been in the hospital 4 times in December. To bring you up to date, let me say first, we might be getting some answers. This last Monday Tim and I came in for PT knowing that we were going to see about getting him admitted. We called the Nurse coordinator and she sent us to ER, where he again was anemic. Hematocrit of 22, where the lowest they want is 24. He got 2 units of blood and started the liquid diet for the lower GI. After two days, Monday - Wed, he got the GI. It was not clear enough, he still had stool after two gallons of go lightly! He got two units of Blood on Monday, but was not really feeling any better. His Stomach was tight again, looked like he was retaining fluids again. The doctors were going to give him more blood, but this time there was a new problem. It seems he is making an antibody against a different blood protein, E and he is lysing his own blood cells. He is also low on White blood cells so they are going to be checking his bone marrow. That means another biopsy. This morning (Friday) he went in for an angiogram (a test to check the status of the vena cava and portal vein). They were looking at the blood vessels from the heart to the liver. The Portal Vein was some what constricted, with a pressure difference of 6mm Hg when 3 is acceptable. They used a balloon to stretch out the blood vessel. He is now at a pressure difference of 3, but they will be watching it. They also took his first post transplant biopsy of the new liver and it is working fine, NO REJECTION. On the other hand He is a bit grouchy and is getting tired of being in the hospital. They have a hematologist working on his case with the Transplant team and he came in this morning. One of the methods of treatment is with steroids. That would mean that he would be really grouchy. Ouch. We will know more later, maybe not until Monday. We will not get the photos from the camera pill that looked at his entire Int. Track, mostly looking at the sm intestines and septum (?). He will get two more units of blood today as his hematocrit is down to 20 ( Monday/Tuesday it was 24). He is sore, his back is sore, his stomach is tender, but we went for a walk and found a chair in the sunshine and he sat for a while. That made him feel better. When we got back the head of the hemotology department came in and visited with us. She was very much on top of his situation, and from her presence, tone and plan we could tell that TIM WAS SPECIAL. I have always know this, but now we can say it is in his blood that makes him special. :) She said that Monday she will have the data for a baseline to have a plan for him. Some people are so brilliant that they can make the complicated seem simple. That would describe her. I think we are both feeling that this will be resolved with her consulting with the Transplant team. To summarize, I have been telling Tim that they needed pictures of his insides to see if his inner beauty was as radiant as his outer beauty. When you have been poked, and in Tim's words "violated" as much as he has, you have to find something to smile about. That being said, all of the pictures they have taken have been "sub optimum" but have given them enough information to know that the source of his anemic condition is not from a bleed. Tonight they are giving him four more units of blood, this time it is Type O, he is A+. They did several cross typing to see what type blood had the best mix with his, so tomorrow he will be feeling much better, some of the air they pumped into his stomach will have passed, the liver will have filtered some of the fluid back up in his abdomen, he will be able to get off this floor and maybe have dinner with me in the Plaza cafe. It will be better because as he said 10 minutes ago, we will know more tomorrow, we will have the baseline data.

Keep us in your thoughts and prayers, they have lifted up our arms when we have been too tired to hold them up ourselves.

Tim and Judy