March 30, 2007

Today is day+57 and it has been a great day. I think the sunshine has really lifted my spirits a lot. My energy and physical stamina hasn’t changed much at all from the last update. That has been disappointing to me. I have always been an active guy but most days I can only get downstairs and sit much, (if not all) of the day on the sofa.

My mind is constantly going like I’ve had 2 pots of strong coffee because of the prednisone. So I’m sitting here with a million ideas bouncing around in my head but my body can’t cash the checks. AARRG. My lowest weight was last week at 196 pounds. Today I was at 202 pounds. That means my absorption is getting better and my protein levels should start slowly replenishing. My protein stores are severely depleted, which greatly affects my energy reserves.

From what the bone marrow transplant team keeps telling me I have several weeks to go before I can expect much of an energy increase. They also say I am making “stellar” progress and that I can’t expect any better results than I’ve had so far. During my lab appointment today, when I was being seen by my nurse practitioner, I was told that I need to keep as active as possible so that my muscles will rebuild as much as possible. I need to stay as healthy as possible so that when the next “bump in the road” happens, I won’t be physically taken down as far.

It is hard for me to believe that my progress is great or that there is another bump coming. On one hand, I am trying not to over anticipate God’s graciousness to me, but on the other hand He has been so gracious thus far I keep anticipating His favor to continue. It has been a fine line of not being over expectant, but celebrating His continued grace.

Again I can’t believe how Barbara has given up her control, freedom, schedule, even life to be my caregiver. She is constantly responsive to me and continues to give beyond anything I can imagine. She is a real trooper.

I just found out that on day+60 I can start being around a few people out of the house as long as they are not sick. I need to not get in close contact, but I can hang out with people again, if my energy level allows. That is really going to be great. I can’t go to church or go to Costco on Saturday when there are a lot of people in close proximity. However, Costco on Wednesday morning when it is not crowded is OK. Also, I can go to restaurants as long as the food and restaurant is clean. No buffets, taco trucks, fresh salads or vegetables. My diet is still limited to ensure that any GvHD will not flare up again.

I hope you all have a great weekend. I plan on taking in some of the Final Four games.

Thanks again for your prayers and for sharing in my journey.

March 23, 2007

Today is a real milestone. It is day+50. I’m ½ way to the magically day+100 when the acute period of the transplant process is over. By that time my circumstances will have given the doctors a good indication where I will probably end up to be. Again, there will be no guarantees, just some statistical data.

I am feeling so much better than last week. Today I made it up the stairs without using my arm muscles, which has been a major goal for me since I came home from the hospital. The last 4 steps were really hard though. Later in the day I had my laptop and with just that little extra weight, I couldn’t go up the first 3 steps without hands. I still have work to do.

At my appointment on Tuesday my nurse practitioner gave me a great explanation as to why I’m so weak and progress is slow. She said I’m a big man, who at 6’ 8” and 230 pounds should have a calorie intake of about 2500-3000 daily. However, when I was in the hospital for the transplant, my daily need was probably closer to 5000 calories because of the trauma of the transplant process on it. Again, when I went back in for the bout with GvHD (Graft versus Host Disease) my daily need was held at the 5000 calorie level as my body continued to try to repair itself and fight the GvHD.

However, because of the sloughing of the lining in my digestive tract I was not absorbing much at all from any food I ate. Coupled with the fact that I was only eating broths and little else, my muscles were atrophying as my body was channeling the calories to repair itself. The other circumstance is that the steroids attack the larger muscles and further weaken them.

My absorption is much better now and my appetite is very much improved. Here’s how I’ve been eating. Yesterday at 6:00am I had a large bowl of chicken noodle soup with carrots, onions, and corn and a cup of tea. At 10:00am I ate 4 pancakes and a large pork sausage that was very lean. Then at 1:00pm I had a thick tuna salad sandwich containing water chestnuts, boiled eggs, olives, pickles, onions, mustard and a little mayo. Along with the sandwich I had a large bowl of applesauce and banana slices. At 3:30pm I had another thick tuna salad sandwich and a Snapple. Then at 6:30pm I had a pork steak, baked potato, and 1 ½ cups of steamed carrots. I finished out the day by eating two big bowls of popcorn while watching the UCLA game. Needless to say my appetite is coming back very well.

By monitoring certain medicine levels in my blood we can tell that my digestive tract lining is rebuilding because my absorption of the medicines is much improved. I’m hoping that I will stop losing weight soon and stop the muscle atrophy. My weight is 197 pounds, which is about what I weighed when Barbara and were married 34 years ago, instead of 230 pounds where it had been hovering for the past 6 months prior to the transplant.

Being an engineer it really helps me to know where I am in the scheme of things while going through a process. When I told the nurse practitioner I wish I knew what the yardstick was to measure my progress, she smiled and said I was the top of the yardstick. If all patients were where I am with what I’ve gone through she would be very happy.

So again I sit here in total awe of God and His provision and grace in my life. I don’t understand why He chose to bless me and certainly don’t feel worthy of it. However, I am truly thankful that God has chosen to glorify Himself by protecting me from so much more pain and suffering.

March 19, 2007

It is day+46. If you remember from my last update, I walked around Costco last week. Well that was a bad idea because it was too much too soon. I suffered for it, especially the next day. I had no energy and my feet / ankles looked like Nerf footballs from the edema (swelling from trapped fluids around the tissue) for the next couple of days. I just have to learn that as long as I sit around, I feel good. But, I can’t do much physically. My mind is going miles per hour from the effects of the steroids but my body can’t keep up yet.

Yesterday I bent over to plug in an electrical cord and I was stuck there with my feet and both hands on the floor. I couldn’t get up and I didn’t want to go to the floor because it is so hard to get up. I finally made it up after looking like a new born calf trying to stand for the first time. That was another reminder of baby steps, Art, baby steps. I still have to help with my hands as I go up the stairs, but with not nearly as much pressure as when I came home. It will be a red letter day when I can go up all the stairs without using any hands.

My diet is still very restricted and bland, but my appetite is back to full strength. I’m getting tired of chicken, chicken, chicken and I’d really like a salad, but I’m being very cautious because the GvHD was really a bad experience. I do not want to go through that again.

I’m currently taking 34-35 pills of various medicines every day and getting magnesium infusions twice a week. Hopefully I can quit taking so many chemicals soon.

During my last out patient appointment I found out that I probably had a bacterial infection that led to the diarrhea that caused my last trip to the hospital with GvHD. Because the doctor performed biopsies right away they found the start of GvHD very early and were able to get it under control before I felt the full effects.

The nurse practitioner said that mouth, throat, and gut pain for most people with GvHD causes the patient to quit eating. Most patients when GvHD attacks require IV nutrition both while in the hospital and for a while after going home. With IV nutrition my protein stores would be even more depleted as I am now and I would have been much weaker. ONLY GOD

It has been so great to be home. It relieves a lot of pressure on Barbara. We still live day to day, not knowing what God has in store for us. All we do know is that He is in control and has been very gracious to us.

Thanks again for your prayers. You are an important partner in my journey.

March 15, 2007

Today is day+42 and I’m progressing slowly, but in the right direction. Yesterday I actually left the house and walked through Costco with Barbara. I was glad we had a cart because it doubled as a walker to help hold me up at the end. I made it the whole way around the store. Amazing how therapeutic a walk in Costco can be.

The doctors would not be happy because of my being around the public. I carefully stayed away from people and wore my special mask. My muscle strength is returning slowly. Now I can walk up our stairs without much help by using my arms. I’m slowly adding different foods and my GI tract is doing great so far.

I received a letter from my donor at my last lab appointment. My Donor and I will not be able to find out names or locations for at least 1 year from the transplant. Until then, I send emails to my donor through the unrelated donor coordinator at OHSU. She censors it and forwards the emails to the donor registry where my donor registered. They censor it and send it to my donor. One that thing I noticed in the letter is that my donor wrote mum and dad, not mom and dad. I suspect that she is British, but probably won’t find out until a year.

Together we are making daily progress. I thank you for your prayers.

March 11, 2007

It’s day+38 and I’m doing so much better. My GI tract is doing well and I’m starting to add some things to my diet. 2 days ago I had a scrambled egg and yesterday I added bread to make French toast. Today I took some canned chicken and made chicken salad with a little mayo and mustard and had a sandwich. So far so good without any more flare up of GvHD symptoms.

When I first came home it took me about 1 minute to climb the stairs. I had to pull myself up with my arm muscles because my thighs were so weak. When I got to the top of the stairs I had to stand and rest before I could walk any farther. It was a really weird experience. My high dosage of prednisone debilitates the large muscles near the body core. That along with living on a very low protein diet has depleted my protein stores.

Today I can get up the stairs in 15-20 seconds and continue without stopping. I still need to use my arms to help, but not nearly as much. Each day I feel a little stronger (very small steps) and am so appreciative of God’s grace to me. My prednisone dosage has been lowered a little and will continue to be lowered slowly now as long as no GvHD symptoms flare up again. That should help my muscles to work better again.

Being home has been great for Barbara as well as me. When she went to the hospital every day there wasn’t one spare minute for her. Now she can be home and have time to do some things for herself. I can’t express how well she cares for me and what an angel of mercy she is.

Thanks again for your prayers. God is really doing miracles in this old body of mine.

March 6, 2007

It’s day+33 now and I’m getting better by the day. In fact, I am going home tomorrow, Lord willing.

I have been raised from GvHD diet level 1 to level 2. That sounds great but in reality it is still very restrictive. They have added things like mashed potatoes (with no milk, butter or other flavors), pasta or white rice (with no sauce, butter or anything) and cooked carrots to the broth and liquids of level 1. Basically I pour chicken broth over the new stuff. Level 2 is a LOT better than having an appetite and drinking broth only, but a bit boring. I’ll certainly take boring over feeling like I did when I came in.

My GI tract is so much better. What a blessing. My medicines have been all switched from IV to oral and the medicine levels in the blood are staying where they should. All this is a good indication that my GvHD is going away, or at least under control.

I’ve always approached this healing process as pushing myself and being positive will speed the recovery. This bout with GvHD has changed my tactics a lot. With GvHD one must plan on going slower than they can imagine and allow the sloughing of the GI lining to heal at a very, very slow rate. This is another lesson in patience that I protest so much.

God has been so gracious to me. There are 3 bone marrow transplant units here at OHSU. As I walk around the unit I am in and in the previous one also, I have seen so many people who aren’t doing very well. I am truly thankful for His grace and favor in my life.