A Step Back

When we got out of the hospital one of the nurses told us to remember that each good day would have two steps forward and one step back. We have been blessed with mostly forward steps, that is until Thanksgiving day, when Tim took a step back. Quite literally a step back. We had decided to stay at the apartment and not go to thanksgiving with family because he was running a low grade temperature and had the sniffles. In the afternoon we were going to get out and get a newspaper, walk a bit, then have a dinner. We were at the store when Tim bent over to look at the newspapers that were left, when he stumbled backward, when he took a step back. He fell on his tailbone and bumped his head. He was slow to get up. The paramedics came and checked him out and gave him an ok, but he was really sore and moved slow. I called the hospital, the doctor on call seemed to agree with the paramedics but he said to watch for a few things. Concussion, abdominal pain, inability to urinate. He was good on all of the important things, but the pain was more than he could handle without medication. He had just gotten completely off pain killers so it was frustrating for both of us. It was a night of very little sleep. This morning we had to go in for a blood draw. It was a slow process, but we made it, and the fact that He had to get up and walk, got the muscles warmed up. Tonight he is still sore, but he is able to get up without my help again. He feels like he is ready to continue the journey to better health.

By the way, that journey will mean a trip to buy him some new clothes. I had no idea how much weight he was carrying because of the fluids his body retained. To date he has lost 88 pounds, from his maximum weight after renal failure in September.

Yeah!!

The things we need

This last week Tim and I were blessed with visits from friends. Tim was so appreciative of the gift of their time. First a member from the Civil Air Patrol met our daughter and picked up some things for Tim and I from home, the models he had wanted to work on, his computer, my walking shoes. She had been praying about a trip to this side of the mountains, when I sent an email letting her know why Tim had been AWOL, she decided to come. I am sure AWOL is not what they would call it, but there were so many that did not know why we left so fast. Her visit made Tim feel connected, that he has a place in our new location. Then days later we got a visit from my administrators at school. They drove over and back during the Apple cup. It was so good to see them and find out some of the things going on at school after a really busy week. They brought us some much needed items, the kind of things that you can't think of when someone asks "what do you need?" It made me smile, because I realized that my "needs" and "wants" are very different now. With Thanksgiving coming up, it is comforting to know that Tim and I are doing fine. We really do have what we need. He is healing, we argue just enough to keep us from sounding like "Little house on the prairie", and we are truly grateful to have this time together. We are not ashamed that Tim and I could not think of things that we need to make life easier, because the basics are covered and we have a very deep appreciation for this. I remember my mother, learning to take care of herself after a brain tumor almost took her early from us. We came to visit and she was sitting looking out side, watching the leaves change colors. My family can all tell you of the delight she took in the simple things, because she so appreciated the opportunity to be with us. She did not complain that she could not walk, she instead sat in the kitchen made cookies and watched them rise in the oven.

Tonight I am sending a heartfelt "Happy Thanksgiving". Reflect on the things you are thankful for: our faith, our health, our family, our friends, our jobs. Smile at the quirks that make living interesting. It is good during the rush of the coming holiday season to start by remembering what truly makes us rich and strong.

Poster Boy

Friday morning we had some good news. We had clinic again and our surgeon took out the staples. They use staples because if they need to open up the incision for any reason they can only open the area they need to instead of the entire incision. They increased the anti suppression drug again, as his white blood cell count is up. Even so the Transplant Coordinator said all things considered, there is no temperature, no infection, Blood pressure is good, Blood sugars are ok, and the wound is healing nicely. The fact that he is doing well was confirmed by the diabetic nurse when she came in as asked " are you only 10 days?" Really it was 12 days, but who is going to argue. Then she commented on how good he was doing - "you look so good, you could be the poster boy for liver transplants". I have been repeating that to anyone I have talked to, what a blessing! The best was Tim's face, he was really proud of the work he has done.

It started this summer when he started walking with a soccer ball around the park. They were not long walks, but sometimes he would go twice a day. Many of the doctors have told him that by doing that simple thing helped him recover from the coma, regain his strength quickly and be ready for surgery. We have been supported by many prayers, positive thinking and encouragement from our agnostic friends. We did not have to wait years, or even months to get a phone call. Many that we have talked to have had several calls, only to be sent home. One person from the support group said that she had 8 calls, sometimes she was on the freeway and was called back to go back home. Others have gone through prep, and then sent back home when the liver was not acceptable. Few have only a ten day wait and a successful transplant on the first call. So as we continue to look back we see how blessed we were. As I look at how Tim was doing the week before the transplant, I know that our first Critical Care Physician would have been correct, we would have had several emergency admissions, hepatic comas. Even when he said that, my mind set was "not if I can help it"! In reality I could do my best, but I had no control over the problems that come with a dying liver. Tim can be called a poster boy, but not only because he walked and did some things to help himself, or I monitored his blood sugars, hired someone to be with him, watched for problems with his liver functions, but because grace interceded for us, with a 10 day wait, a healthy liver, skilled surgeon, and excellent support.

We have a way to go, so do not stop with your prayer, your notes, your calls, and your encouragement. We will get back to work, reading to our granddaughters, our walks, with your help. You have a part, as we do in all our living. We can pay it forward, without recognition or a thank you, which I know many of you have, even the ones we do not know about, who have given us your support in secret.

Moving on up!

Today we moved into a newer apartment, it is on the first floor so I do not worry about Tim having to use the stairs if the elevator goes out. It was one of the simplest and hardest moves I have ever made. Simple because I only had 3 suitcases, a few supplies and some food to move. Hard because I felt I needed to go back and clean the other apartment which meant I left Tim again on his own for a while. I know he gets antsy. It is hard to be alone and not be able to go somewhere, anywhere. He did pretty good, I got back to the new apartment and then went to get meds - again and find some bed boosters. I am not sure what else to call them. They are cones that you put on the feet of a bed to lift it up 4 inches. I put them under the chair in the living room so that it would not be so low for Tim. That allows him to get in and out of the chair without using his abs, which are non existent since they were cut in two during the operation. The goal is to reduce the stress put on those muscles as he heals. They actually worked.
He is doing more and more for himself every day, last night I slept through most of the night as he was able to get up and down on his own.

One of the things that has helped the healing process is the messages and calls that we have received from family, friends and co-workers. Tim had a great laugh with our friend Mary , when she reminded him of his comment to her when she came to see him in the hospital. He denied any such comment and then admitted that he did remember it. We also got a call from my brother, his brother, a message from his sister, my sister and a call from Patsy. Tim is a member of the Civil Air Patrol, working with the cadets. I sent the leader for the cadets an email to let them know why he had not been around and today he got some great emails from them. One was an e-card from a cadet. Simple things go a long way. Reports say that healing is largely based on the attitude one has. This is so true, and when you know that people are thinking about you, hoping the best for you and holding you up in their prayers, you can't help but smile. I have had many ask what they can do, what do we need. It might sound simple and maybe later I can think of things I need, but really keep doing the little things. The power-point of beautiful pictures, the notes of encouragement, comments on the blog, or e-cards. This weekend we are looking forward to some visits- which is not a little thing. These all keep us connected and supported. I am grateful for them all, and when I see the smile in Tim's eyes when we read them, or hear from you, I have a bit more energy to take care of the next step. It is the human element, and you are very much a part of it.
Thank you for helping in the healing, we will be home soon.

recycled parts

Today is Tuesday the 9th day anl (after new liver). It was our first clinic - follow up appointments with the doctor, pharmacist, nutritionist, and research group. We also had our first support group. We had to be up early and get the blood draw at 7 so some of the results could be back for the doctors. Tim got good reports from all, we saw our surgeon again, he was pretty proud of his work. All of the drainage bags are gone now. We still have to dress Tims inscision and the areas where the drainage tubes were. We got another weeks worth of medicine - actually a month for some and a week for others. Currently Tim takes 48 pills. We were done by 10:30 and we were both exhausted. We got home, had lunch, and took a nap. Then I was off to the pharmacy to get the medications. Two hours later I returned home with a big bag of pills. I held them up to Tim and told him for christmas and anniversary I was buying him a new liver. We both laughed, but in reality it is expensive. I wonder what happens to the people who have no insurance, no savings, no leave. It is not a positive alternative.
There are some groups that are doing their part to help. One is the Transplant house. This is the group we got our apartment through. They fundraise and lease apartments that would work for transplant patients. No stairs, quiet close location, near shopping and the hospital. They furnish it, stock it with cleaning supplies, and the special needs of recovering paitents. Even hand sanitizer and wipes in the different room. They have internet, TV, phone. You really just need your clothes and to buy the parashible foods. They also help people who really have no resources.

About the RECYCLED PARTS
This really does tie together, because we went to the liver transplant support group at 4 tonight.
Many in the support group are on the board for the transplant house. They have these buttons they sell, (donation) "I Contain Recycled Parts". When I saw that I knew I wanted it to be my heading for this blog. They talk about the value of writing to the donors family, and the need to respect their privacy. Each family finds closure in differnt ways, but the lives of the transplant patients are forever changed. We have met three lung transpant families, two young adults that struggled with cystic fibrosis for years and now have a chance. They both said that it is amazing to breath without struggling. The father of one said he still, at night, wakes up to go and listen to his daughter take a breath. I found myself doing that last night, awake, counting Tim's breaths and saying a thank you for each one. I asked for comfort for the donors family, and thanked them again and again. So yes Tim is made from recycled parts, precious, dear, living parts, given by the donor and their family, to other people, not based on their faith, color, gender or opinions. It really is amazing. So as you listen to the breath of the ones you love, be thankful that you have them.

I will remind myself of that the next time Tim annoys me - that will most likely be tomorrow morning.

Thank goodness for Friends and Family

It is one week after the new liver. We are out of the hospital, comfortable, with the clothes we need, food, a comfortable place to stay and heal. We have Leah here tonight and Sarah just went home. Melissa is back with her family. I have read several emails and notes to the two of us from our friends and family members. Some of our friends - he has not met yet - like my new co- workers. But some like Mary, Kim, Adrienne and Melissa he knows well enough to tease, or feel that he needs to be anyone other then himself, even slipping in a sneak joke to make them laugh. They have seen the two of us through some really tough times and THEY STILL LIKE US. That is fabulous. I think some of my new friends are like them. Melissa already knows who Patsy is, she is one of the turtle sisters, even if she does not have the tattoo. The Administration and staff from my new school have given me orders to take care of Tim and they will make sure my students get the education they deserve! My supervisor and friend has even volunteered to teach my students about cellular respiration. I start to think of the move we made to be close to our Daughter and 3 granddaughters. I thought I would never find a place even close to the collaboration and positive environment at Mt. Baker a small district of 3000 students. I thought for sure in a school of 36oo students I would be isolated and alone. Tonight I am saying that good schools start with good staff, community, and administrators no matter what size they are.
There is much to be said for the freedom to be able to focus my energy on helping Tim heal. It is work, sometimes I slip into teacher voice with him. We have had some very heartfelt discussions about this, learning to talk, using signal words, understanding the differences in our roles as he heals. I do understand the stess illness puts on a relationship. I feel the weight of his getting better is now my responsiblity. He knows what he needs to do but the pain and his lack of strength don't allow him to do it. We each have our own methods to deal with the frustration and sometimes my method drives him crazy, or his frustration makes me feel like I am not doing enough. That is when you need friends and family who are honest enough to stand back, not take sides and help you both see the needs of the other. Melissa helped me see the busy work - the need to organize the apartment, was something I needed because I could control that, and not the wounds that were constantly weeping. Sarah and Leah helped me see that when Tim is frustrated he says my name differently. This allowed us to talk and see the need of the other and I think we have a chance to work together to get past this. Is this not what we do on a smaller scale in our homes, with our children, spouses. We do this at work, with our friends and with our brothers, sisters, mothers and fathers. I want to tell you all, it is good to stop, know that 99% of the people we love really have our best interest at heart. They are not trying to hurt us, manipulate us, get the best of us. Yes sometimes that does happen, usually when we are teenagers and the frontal lobe - reasoning, logic, problem solving, risk managment - is still developing. The real problem is that after 25 when it is developed and we are more reasonable, we remember the emotions from those times, and they color our relationships. Even when you are 57 years old and should know better. So where is this going? Working through the stressful times together means slowing down, listening to others, looking at the situation again and trusting those who are in the boat with you. Tim and I have learned long ago that when we blow off some steam to start with, we have to leave it, then later we can get past the emotions and understand. Just to be safe though - I am usually right- or at least that is something we can both laugh at now, and he does. It is good to give him credit. Collaboration is constructive and produces much better results than working in isolation. This is true in work, relationships and in life.

So tonight listen to someone else and hear their heart, not just their words.

Saturday, one week after the phone call

One week ago today we got a phone call from the U of W transplant team. "We have a liver that is a match, are you running a temperature, do you have a cold, runny nose, are you ready to make the trip here?" It seems like at any time someone would say PRANK, but no it was real. I called Sarah as I threw stuff in the suitcase and got Tim's suit case. I got the glucose test kit, Tim got the insulin, I got the wound care kit and some food for Tim if his sugars got low. We were on the road in half and hour. We felt we did pretty good getting things together. In reality, there were no test strips in the kit (empty container) we had insulin but no syringes. We did not eat lunch, and Tim only brought two shirts, one pair of sweats only 2 underwear. Now that we are in the apartment we need a bit more than that.

How it started:

Tim and I were married in the early seventies, he has always been a romantic, in love with the cowboy ideal. We start there because of his romantic view lead him to be a volunteer fireman, first responder and an EMT. This was before gloves and volunteers handle body fluids. He had several times he used cpr to review someone, and sometimes when he worked until the doctor would tell them to stop. That is very likely when he picked up Hepatitis C. There is also the chance that the surgery in 1986 to repair a rotator cuff in his shoulder from the year that he actually worked as a cowboy. Either way the virus entered his blood system and grew silently until 2002 when I switched health care providers and we had to switch doctors. A required test with our new provider gave us the "news". After a year of interferon treatments with good results at first and then the virus count went up again. He allowed himself to become depressed and used alcohol to self medicate, and medicate, and... There are times in our lives that we do not see a path to get us out. Eventually he quite with the help of AA and some very negative experiences. We knew he had limited time and after being sober a great doctor got him to look at the possibility of a transplant. We were on the considered transplant list. Which means we had done the preliminary work and now were just waiting to get "sick" enough.
This last summer I watched as he got slower, more tired, forgetful. I was worried and asked him to check with his doctor. He went and got checked, but not much different. Then on the 28th of August I got home from work and a dental appointment. I thought it odd that the newspaper was still on the walk and the curtains still closed. I had planned to mow the lawn but thought I would check on Tim who I thought was napping. He was not in bed and I went into the bathroom to find him on the floor. He was moving, acting like he wanted to get up. I called him, he looked at me and rolled to his side. He then reached for me to help him up. I asked him who I was, no response. I then told him to lay down, I put a towel under his head and told him I was calling 911. It seemed like a long time before they came and they took us to the closest hospital. After we got there, they tried to put a tube down him to give him some medication without sedation. That was the worst. He was aware enough to yell stop and since the floor was short handed the nurse asked Sarah and I to hold his hands. The ER doctor tried also, I thought I was going to throw up. We were quite please when they came in and said they had no beds and would need to transfer him to another hospital. We got there Dean(Sarah's husband) and Jim (My dentist and Dean and Sarahs best friend) Prayed for him, giving him a blessing. Then the floor nurse took one look at him and sent him to CCU. When someone questioned her, she looked right at them and said this is not going to be questioned. He was going upstairs as fast as they could wheel the bed there. Once we got there things got a bit better, they sedated him and intibated him and he began to rest, and slip more into a hepatic coma. For 4 days he lay on the bed, breathing because a tube pushed air into his lungs. Sarah and I took turns staying with him, reading, talking or just tickling his arm. Sarah was with him when he first responded with a nod. She asked him if he wanted the tube out and he nodded yes! Then she asked him if he wanted to be in the hospital and he nodded NO! It seemed that every time he woke up I was away. Two days later I got a phone call from the hospital. The nurse said someone wanted to talk to me. "JUDY, Im done, take me home. It was still a week before we went home. Then on Sunday the 28th of September I was taking him for a sit outside. We noticed the wraps on his leg were wet and I remove part of them to see bright red skin and open sores. We decided we had to go to ER. We thought cellulitus but instead it was kidney failure. Two more weeks in the hospital, this time he looked better but was still very ill. Our GI doctor made a call to the U of W liver specialist. On the 28th of October we were at the UW hospital for a re-evaluation and surgery consultation. Through all of this we were told that we could expect several trips to ER, more hepatic comas, and a long wait before he would get a liver. Then on the 8th of November we got the phone call. We feel we have had several miracles, blessing and angels sitting with us through this. We have been fortunate to have friends and family that have supported us in many ways. The process seems long and hard but in reality we were only on the list for 10 days. We are very grateful for our chance for Tim to be healthy again. Sarah says he will walk up Badger mountain with her. He says he will do whatever it takes to be healthy again. We have changed our diet to low sodium low sugar, more organic, more fruits and vegetables, more fish, less red meat. Now we just have to get through the next three months.

That is where we have come from. It has been fraught with tears, fears, pain, and laughter. Tim brings laughter and love to my life. I am a very lucky woman, and we are a blessed family.

What day is today?

This seems to be the question I have asked myself several times. Things have been a whirl wind for the last week. I believe today is Friday, day 5 after transplant, from now on known as anl, after new liver. Tim and I are somewhat settled in an apartment on Queen Ann hill, this looks temporary as the apartment we would like to be in will be available on Tuesday. Today we got the central line out, took a shower, walked again with out the walker. Melissa came from the Professional learning community conference to help us move into the new unit. After two trips to the car and 4 trips into the apartment, she wiped everything we could possible touch down with dissinfectant wipes, I got Tim down for a nap. Melissa gave Sarah (my oldest daughter in Tri Cities) the low down on both of us. She is quite astute and I cannot put on an act with her, she reads me too well. Tim gets nervous and starts complaining, I get frustrated and have to get busy, which makes, I want things set where I can find them and he wants to rest a bit. So we spiral - is that so different from other "old couples"? It sounds nice to say that, a bit warm around the corners of my heart. We are going to have to learn to give and take. I need to feel like I have things set up so I can take care of him, maybe I might need to set the timer for some down time first. I did that when Sarah was 2, Tim worked, and I was student teaching until 5 every night. I would come home and set the timer for 15-20 minutes. That was just our time, Sarah would get a book and we would read - usually poky little puppy, or draw, or play hide and seek. If the phone rang, it would go unanswered. Who ever could call back in 15 minutes. It made both of us remember the important things. Then when the timer went off we put things away, got dinner started, sorted laundry and took care of the daily things.

Tomorrow Melissa goes home - I will willingly share her with her own children, who are lucky to have her. Sarah and Leah(daughter #3) will come - sans Leah's pets and our only granddog Evie. Tim cannot have pets around for a while so we will have to see photos of the dog and the grandbabies.

Thank you to all of you who have offered help, prayers, good thoughts, phone calls emails. I have share most of them with Tim. I think my sister Karen has a good idea which I will work on this week, to write down all of the blessings we have recieved since this all started on the 28th of August when I came home after the first day of school to find Tim in an hepatic coma. I am not sure I will every know them all.

So tonight give the people close to you a hug, a smile, or an encouraging word, we are lucky to have today, even more to have friends, and if you are reading this - you have many friends.

Love to all

Tim and Judy