It was a long weekend

One week ago, Friday Tim and I went in to Clinic. We did not leave the hospital until Monday afternoon. The medication was suppressing Tim's ability to make Red Blood Cells, or White Blood cells. He got 5 units of blood over the 4 day period. Each time they have to watch to make sure the new blood does not react with his blood. It was very nerve racking. I have several phone calls as I talked my way through the long weekend. It is hard. We know that he needed this and it would end the dizzy, faint, feeling he had. The blood would give him the energy he needed to be able to exercise, to heal, and to get home. It was just the act of having to go back to the hospital again. The 4th time this fall. Yet, for many transplants, this is very common.

Now because they have discontinued the medication that has created this problem, he will now need a new type of medication, in the form of respiratory therapy. Our first one is tomorrow at 1 pm. Hopefully the roads cooperate and we make it in.

Grand daughters!!!

Granddaughters are the best gift ever. Sarah and Dean had family photos taken and much of the girls personality shines through. Then on my birthday I got a singing phone call from three girls who have my heart. Tim and I were talking to Andrea and Lily was "talking" to us with her mama. As I was saying good bye I told Andrea to put her cheek to the top of Lily's head and simple smell that lovely new baby. As I was talking Tim teared up and told Andrea that it was the sweetest smell and most tender moment of a life. To hold your baby and enjoy the purity of life. I would imagine that grand mothers of little boys enjoy that too, and when I HAVE a grandson, I will say that grandchildren are the best gift ever!

Still,after being in the Tri-Cities for a year and half I love the fact that when I see my granddaughters they still run and shout, GRANDMA!!! They have told us several times that our house is just not as fun when we are not there. Does that remind you of the saying, the home is where the heart is? It is fun to see the differences in each of these little ladies. I am looking forward to getting to spend time and make that bond with Lily. It is good to know the people who love you simply because you are. We are formed not just of tissue, chemicals and genes, but from the hearts and hopes of the people who surround us. We are lucky to have family and friends to help us polish the way we see ourselves.

So thank you all for making us loved, we will pay it forward, back to all of you and to the ones who are the best gift of all!

Tim and Judy

cold weather, warm wishes

Here in Seattle we are experiencing the coldest weather in 18 years. With snow on top of ice, because there are too few snowplows to keep the streets clear, Seattle comes to a crawl. Not a stand still but moving very slowly. In our apartment Tim and I are warm, fed, and entertained. We did make it in this morning to the hospital to get a blood draw and some physical therapy, we were the only outpatient in PT. One of the nurses walked the 1.5 miles to get to work. On the news they were talking about how many in the medical/hospital community walked to work today to keep things running. They are very dedicated, but my guess is that tomorrow it will be harder to walk with the ice and snow. We are supposed to have clinic tomorrow but we will check the roads first.

Today we got a care package from a group of really beautiful woman, a movie for Tim, goodies, a singing rain deer and a warm throw blanket. Care packages are fun, Tim and I have gotten several, our first care package came from Andrea, with puzzles, books and cards. Then Rachel set Tim some music, a new book and a first aid kit! A stuffed dog, a book to share with our granddaughters remind us of our visit with Debra, from the Civil Air Patrol. Then we got a big basket of every day supplies from Raul and Charlotte on a short visit. It was nice because I had been considering buying some of the supplies they brought the day before. The cards we have gotten are lined up on the window sill and get read again, and again, filling us with warm wishes and positive energy. They come from Spokane, North Dakota, California, Washington DC, Seattle, Pasco and Bellingham. We very much appreciate the gifts, the phone calls, the stories, the emails, the cards. It makes this time much easier to get through.

If you want your heart warmed read the comment from Vickie in the next post - it is very encouraging

I am hoping all of you are safe and warm.

One Month!!!, and a few days

It is been more than one month since Tim had his liver transplant. We have survived some of the ups and downs of recovery. We know that it is not over and are hopeful that we will be able to return home. That though will wait until after the storm coming through, and maybe even be two more months. Today Tim told Andrea, our youngest daughter and newest mother, that he was beginning to feel like we could make it. That he was not going to focus on what was holding him back, and would not allow depression to slip in. That though is hard to do. We work on that everyday. Yesterday he told me that it was better to look at how far we have come and not on where we feel we should be. So we edge toward next week when we will celebrate our son in laws birthday, my birthday and Tim's and my anniversary - which by the way I exaggerated, it is 36 years not 37. It is a very dear present we give to each other.

So Merry Christmas, Happy Holidays, Happy Birthday Dean, it is a good season. If you are stuck in a storm or the sun is not shining where you live, share some joy, share a laugh, smile, or kind word and it will feel like the sun is shining.

Lily Marie

Good News

This morning I have good news! Last night at 8:22 our 4th granddaughter, Lily Marie, was born. Andrea and baby are doing fine after 3+ hours of pushing. Lily is 18.5 inches long and 7lbs 4oz. In the photo, Aunt Rachel is holding her. Then this morning at clinic Tim got the news that all the reports came back with no problems, and that the liver enzymes were back to normal levels. Increasing the medication worked, now we hope he does not have to stay on the high doses for too long. Today I am just too happy to reflect much, just very, very happy.

Aliens, laughter and rejection

This is one week before the operation, our granddaughters came to trick or treat at Grandma and Grandpa's house. Two weeks later, when they came back with their mom to get some things to send to Tim and I they told their mom that "It isn't much fun at Grandma and Grandpa's house without them here" It will be even more fun to visit when we come home with a healthy Grandpa!

It has been a bit hard for me to write lately. Sometimes writing is a good release and other times, when I am a bit too frustrated, it is hard. Recovery is not easy, and I want it to be. On Tuesday we went to the support group and there were several (4) pre-op liver patients. They were frustrated with the same thing we were frustrated with before the operation; you have to be sick enough to undergo the operation. If recovery were easy, if the process were easy they would not have to wait until the % chance of dying without the transplant is greater than the % chance of dying from it. When I consider the options for the short-term outcome of this operation, I have to come to terms with the fact that it comes with difficulty, frustration, and no promises. That being said, I am the eternal optimist. I choose to look at the best outcomes, and work to that end. So I believe that we will walk the MS walk together this spring, with some family and friends. But every once in a while, I look down while I walk and see the empty spaces on which I stand. If one chooses to stand still, or continue to walk, it makes no difference, what supports us does not change. So we might as well take the next step.

Aliens: The medication that suppresses the immune system and tricks the body into keeping the liver is a steroid. It has multiple side effects. One side effect is a range of emotions, sometimes called riod rage. Tim and I were talking about this the other day and he said that sometimes he looks back on the day (or hour) and wonders if aliens have taken over his body. In a moment of clarity he asked me to give him some time to recognize his ill behavior and beg for forgiveness. I begrudgingly agreed. We laughed at the idea of preemptive pardons. Later my sister said there should be some type of statute of limitations, how long do I wait - not very long usually - and how far back in our 37 years can he claim medications as the cause of his actions.

The medication has other side effects; night sweats, swings in blood sugar levels, diabetes for people that were not diabetic before, seizures, tremors... the list goes on. People do not usually get all of them; some are common, like the night sweats and high blood sugar.

The other night Tim played a bad joke on me, but it had the right outcome. We both laughed so hard that it started to hurt. Nighttime is always the hardest and the other night I could not go to sleep. It was early morning 1-2 am and I had to watch him. He could not relax, his body kept twitching, some times small, a finger or foot, other times it seemed his whole body jumped. I tried to rub his arm, and shoulders to help him relax. Don’t think this is because I am a good wife, it was 2am and I wanted to sleep, so it was with mixed motives that tried to sooth his movement. I would stop and watch him, and then it would start again. At one point his hand became ridged and I rubbed his fingers and palms, put his hand down on the bed. This repeated itself several times and I began to think of all the things that could be wrong. The list of side effects ticked off inside my head, tremors, seizures... and then he opened his eyes and smiled. He has a little boy laugh when he pulls a prank. I was so mad, relieved, and mostly aware that I was fussing over him a bit too much. A good belly laugh can pull all the tension from your body, and we both slept well for the rest of the night.

Rejection: Tomorrow we go in to see if the doctors can find the cause of Tim’s elevated blood levels that indicate his body is trying to reject the liver. We do know that the blood work shows that he is not getting the correct dose of medication - the one with so many side effects, so we have temporarily increased the dose to 3 times his start value. Low levels of this drug allows the body to begin attacking the new liver, high levels suppresses his immune system so that he cannot fight off any infection. It is a balancing act. I have been reading up on how the medications work, how this process works, but I have discovered again why they call medicine a practice. Each transplant group goes about the process of recovery a bit differently, and they modify their protocol with every patient. The goal remains the same; the way to get there can differ. When I teach, I try to help my students identify their own misconceptions, to help them understand the traps and barriers we construct that will eventually keep us from understanding. As I am working to learn in this new situation, I have to check my own misconceptions, so I do not have false hopes, or be too arrogant to know that my own understanding is still short. I am reminded of the verse in the bible that says "But now we see in a mirror dimly...”. No one can know everything, not even the experts, so they must practice, and I must trust their practice, and ask questions.

It is good to have friends and family help keep me grounded and focused. It is even better for Tim to have friends and family that keep me grounded and focused; your work might never be done, but thank you for trying.

Love to all

Tim and Judy