8/22/09 A Wonderful Week

It has been an interesting week and everything is looking better each day now that my pain has subsided to a 2-3 on a scale of 10.

We had a leisurely Sunday morning at Elizabeth Gamble gardens on 2.5 acres – very accessible for me. We then visited the Artist Guild Village run by Stanford Packard Children’s Hospital and had a simple lunch there.

Monday is now clinic day and catch up day for us (laundry, grocery shopping, etc.).

Tuesday and Wednesday we decided to try camping in our motor home at our Thousand Trails Morgan Hill campground, only one hour from here. We were surprised how quiet and relaxing it was. It was wonderful to be outdoors just enjoying the nice weather and nature. We took a few walks, read, Pete biked and swam, cooked and BBQed. It’s nice to have a king size bed in the motor home so we slept very well after all that fresh air.

It was nice to come back to the Marriott, our home away from home and dinner was served by the inn. We’ve gotten to know the staff, the general manager and the owner of this inn. The maid brought me a bouquet of flowers from her garden, the boss asked if I needed cranberry juice or anything special his staff can do for us. We’re getting spoiled and pampered.

Today, George Janeway, our good friend and dentist came to ride his bike with Pete. They rode to Stanford from here and he also treated us to Thai food for lunch. We’re so blessed with good friends and so thankful that we always find people we enjoy getting to know, especially the couple from Green Lake, Wisconsin who have been here the whole time we are here (The husband came for radiation treatment for some rare and unusual lymphoma.) They’re glad they can go home tomorrow. We’re hoping that we can go home in about two weeks if all goes well.

One of the activities we’ve enjoyed when we need a quiet activity is watching some old movies through our Netflix subscription. This week we saw “Bridges of Madison County” and “Steel Magnolias.” I remember seeing “Steel Magnolias” when it first came out in 1989 – other than the sad ending, I didn’t relate to it at the same level as I did this time. What I’ve personally experienced recently with my transplant and at this stage in our lives now that we have a granddaughter really put a different meaning to this movie.

Thanks again for the emails and cards that continue to arrive. We really enjoy hearing from all of you. Don’t forget to stop and “smell the roses" while you’re enjoying your summer. We’re going to miss this wonderful weather when we leave this area. We’re taking full advantage of what we find here that’s different from home. Now I realize how much Pete and I missed in the past three years since we had cut down on our travels. I can’t wait until we can resume our travelling again.

We will remain in touch until we get home or whenever we see you again. God speed! Addie

The Worst is Over

8/15/09 -

The worst is over and I am ready to face the 2^nd phase (2^nd month) of recovery. Pete and I celebrated yesterday by going out in our motor home and spent all day at the Filoli gardens and estate in Woodside (where the TV series “Dynasty” was filmed). It’s only 10 miles north of Los Altos and we recommend it to those who enjoy visiting botanical gardens. The mansion of 40+ rooms sits on 650 acres. The surroundings, the sunken garden, the rose garden, etc. are so beautiful, relaxing, and inspiring. We had lunch at the café – no matter where you sit you look out to the gardens and trees. There were a lot of volunteers who are there to help and answer all kinds of questions. I had my Mom’s wheelchair, so Pete wheeled me around part of the time. After lunch, I took a rest in the motor home while Pete went back to take pictures and walk the trail. What an enjoyable day!

Since my last blog, I had a slight set-back but am now back on track. First, I discovered I was taking lot less than the dose of the prednisone, a steroid hormone to prevent rejection by lowering the inflammatory response of the body. This was going on for more than two weeks since I was discharged from the hospital. I’m now on the correct dose. Sunday night, I had fever of over 100^o F and had flu-like symptoms (achiness throughout). My patient manual said these are some of the symptoms of rejection. Thank goodness I had an appointment with my doctors Monday morning. They immediately said I had an infection on my exit site where my dialysis catheter was placed through a hole in my abdominal area. During transplant, the surgeon had removed the dialysis catheter and closed up my exit site. It turned out that my scab came off too soon and I ended up with pus beneath the surface. The doctor had to squeeze out all that pus (no fun but better than cutting it open to remove the pus). Now, I’m on an antibiotic for a week. All in all, I survived the setbacks and feel a lot better.

Harry and Arline Fierstine from San Luis Obispo came up to have lunch with us on Wednesday. We had a nice visit and it’s good to see some familiar faces. I have received more cards and emails from many of you and they continue to give encouragement and support and cheer us up each day. We even received words of kindness and prayers from people we have never met, but those who have followed the blog. Our world is full of good, positive people even though there is so much negative energy around us.

Pete and I are starting to like this Los Altos community and its surroundings – the temperature is in the 70’s and 80’s every day, sunshine, and wonderful restaurants with reasonable prices. Within a few blocks, we have Whole Foods Market and Trader Joe’s plus all the international cuisine you might want to try. We also discovered the 150 shops downtown, but we only walked a few blocks.

Life without stress is the way to live. Since we haven’t had to deal with work, house chores, paying bills, constant phone calls, entertaining, etc., we’re adjusting to a routine of one-day-at-a-time. Other than hospital appointments, we have no obligations whatsoever. That’s what I need to have a speedy recovery, so thanks to all of you back home who are doing all that and more and taking all the stress from me. I owe you BIG TIME!

We will continue to use the Marriott Residence Inn as our home base, but we hope to take a couple nights here and there in our motor home to get away a little bit. It’s amazing how simple our lives have been and yet how happy and content we are – “less is more”.

Simplify and have less stress. Enjoy life each day!

Aloha, Addie

From Addie

Joan has been home for one week and we’re both counting the days to August 14^th which will be the magical time period for us to say “the worst is behind us,” so we’re told. Joan has been going into the office a couple hours a day, but is still recovering and requiring healing time. The healing process takes up a lot of energy and drains you very quickly. Everything you do is an effort and in slow motion. Before we know it we will be just as good as new, I’m sure. My doctor told me I’ll be “better than new.” Can’t wait!

This last week has been exhausting including two days in the hospital for the IVIG.I was there from 10am to 6pm. The other two days were blood tests and clinic days. I was so glad when Friday was here so Pete and I took off in our motor home for a long ride. We met our friends David and Julee Krause from Cambria for a brief visit while we were in Scotts Valley. We then drove to Capitola and then headed up Hwy 1 to Half Moon Bay. We made several stops and enjoyed our picnic lunch in our motor home and a rest stop at Greyhound State Beach. Pete took a little hike down to the beach and scouted around and I had a nice nap in the motor home. We walked briefly around the marina at Half Moon Bay and then drove home.

Today, we decided to spend a day at our Thousand Trails campground in Morgan Hill where we used to bring the girls and their friends camping when they were little and into their teens. We stopped by Camping World on the way to pick up a few things for the motor home. It was perfect weather and we had a very relaxing day. Pete decided to cook lunch and I enjoyed eating outside under the shade of all the trees.

Tomorrow, we might go north to find a bike trail for Pete while I rest and read in the motor home. We’re so glad we brought the motor home with us. We wouldn’t have been able to get out for these little trips here and there without it. We’re getting to know this area and are enjoying the change in pace in spite of the circumstances.

Next week, hopefully, will be the last week of my twice-a-week visits to the hospital. I look forward to some good news when all my test results come back. We have made the most of our stay here. We enjoy hearing from all of you through the email, blog, cards, flowers, and the short visits of a few friends and relatives who stopped by. We really feel everyone’s love and best wishes. For those who have helped at home, especially my sister Maylin from Maui and our cousin Sophia from Singapore, my associates who keep the office running, and those who visited Mom at the nursing home I say “ A BIG THANK YOU!” We’re still not sure where we’ll be after next week, but will keep you posted.

I miss my granddaughter Jade and look forward to being able to pick her up and hold her in my arms. I can’t wait until the doctor tells me I can lift over 10 lbs again. So far, I haven’t been able to drive and thank goodness Pete doesn’t mind doing all the driving and taking me back and forth to the hospital. How we take so much for granted when we’re well. Life is precious – live each day to the fullest and count your blessings.

Until the next blog, take care and enjoy your summer!

Addie

Home Sweet Home (from Joan)

Hello friends and family! I just returned home to Morro Bay this evening and am enjoying a bit of peace and quiet with my cat Bart. There hasn't been a whole lot of action since my mom added to the blog on Tuesday. She had another appointment at Stanford on Thursday and the doctors told her that she's free to go out and about as long as she feels up to it. She's still dealing with pain from the surgery, but she's in great spirits and ready to explore the area a bit. We took a day trip out to Half Moon Bay (I think we headed out within minutes of her returning with the good news from her doctors. She was ready to hit the road!) It was a mellow trip: just a drive and lunch at a nice restaurant by the water. My friend Julianna was with us. She came up on Wednesday to help me out and keep me company. Everyone should have a professional physical therapist taking care of them!

Julianna drove me home today and helped me get unpacked. Joy had the house all stocked with food and fresh flowers. How spoiled I am and how very blessed! I will continue to take it easy and ease my way back into "normal" life over the next couple weeks. I'm not driving yet, but that's OK because I don't have anywhere I need to be in the near future!

My parents are still enjoying their "home" in Palo Alto. Dad spends a lot of time walking, using the computer, swimming in the pool, shopping and doing laundry. I suspect he'll go out for his weekly bike ride on Sunday morning again. He continues to discover all kinds of new things in the area. Mom is doing a lot of reading, listening to music, and watching TV and movies. She gets out to walk a bit each day and is now going out with my dad in the car to run errands and explore. We had a nice dinner out at the Cheesecake Factory last night to celebrate my last night there.

That's all for now. I didn't get a nap today, so am off to bed early. Blessings and love to you all!

Joan

From Addie

It has been exactly two weeks since Joan and I had our surgeries. We've had our ups and downs, but we are making progress, slowly but surely. What a gift of life Joan has given me and what an act of great love. Who would have guessed that when I brought Joan into this world that she would give me a new life. She claims she has no regrets even going through what she had to experience these last two weeks.

Pain is definitely the main challenge for both of us. Our doctors announced yesterday that we have to stop our pain pills and limit ourselves to Tylenol every six hours. We're trying our best.

Pete has been most patient doing everything for us. So far he's holding up and trying to enjoy the pool and his bike ride and daily walk to keep from burning out. He takes very good care of us.

Joy and Jade were here the first week while we were in the hospital. They were wonderful with their moral support and keeping Pete from stressing out. Joy is also helping the office with bills and ads and wherever she can help during our absence. She's working triple time: Cal Poly, my office and the baby. What a champ!

We've also been blessed with friends and relatives who have brought food & cooked, especially the first week giving support and running errands. We have felt the power of all your prayers and positive energy which really sustained us. I can truly say I was very much at peace the day of surgery and had no anxiety nor fear. The first night after surgery was a blur, but I was so lucky to have my wonderful nurse Amber who was by my side all night. I could hear her voice talking to me, but I couldn't wake up to meet her. It wasn't until the next morning that I asked her for her name when I finally opened my eyes. I thanked her profusely for her excellent care. I was very fortunate to have a private VIP room the first four days in the hospital. The team of doctors and residents and fellows came to see me every day while I was in the hospital. We all had one nurse for every 2-3 patients, so we got excellent care.

I was told during our training that my first month will be eating, sleeping and taking meds. I'm now a pro at administering my own meds from 8 a.m. to 10 p.m., adjusting on the immunosuppressant drugs as they get the results from my blood test twice a week. Joan has been cleared from her follow-up and will return for her two-month check-up. I still go to clinic twice a week and hopefully by next month only once a week. Next week I have two more IVIG infusions which will take two full days. Hopefully the nurse will come to my hotel to do my IVIG. (This is to keep me from rejecting Joan's kidney since we are not a perfect match.)

It has been a long journey since I was diagnosed with renal failure over three years ago. I have learned a lot about diets, discipline, how to adapt to a different lifestyle, staying positive, and how to do home dialysis. I have met a lot of wonderful people who have taught me knowledge I wouldn't have had and who have become my friends and support system. Having experienced and learned so much these past years, I can't help but marvel at the medical knowledge that we have and all the dedicated people who research and practice in order to enable me to take this journey. None of this could have happened if this were twenty years ago. We do have lots to be thankful for!

My heartfelt thanks to all of you who have supported us throughout this journey. We treasure and appreciate your friendship, concerns, prayers, etc. I will close with my favorite prayer:

God, grant me the serenity to accept the things I cannot change,

Courage to change the things I can,

and wisdom to know the difference.

Addie

TGIF

Hello friends and family! Joan here.

It's Friday afternoon and I finally feel like sitting in front of the computer for a while again and updating our blog. It's amazing how draining this little machine can be when you're not feeling well. I'm glad my dad posted our update earlier in the week, but I thought I should let people know that I am feeling much better than I did on Tuesday! That was another low point, but the days have gotten better for me since then. Today I sat outside and read a magazine for a while, then chatted with my friend Kata before she headed back down south, then took a nap and now have just taken a nice shower. That's all the adventure for the day.

My mom is doing quite well according to the doctors we saw yesterday during our check-up. She's been in quite a bit of pain the last couple days, but they say that is normal and she should be feeling better within the next week. Even in her pain, she's a pleasure to be around and has been in a pretty good mood and remaining as optimistic as ever. We were cracking each other up as we hobbled into the hospital together yesterday. It was pretty pathetic looking! My mom starting laughing first and then we were both trying not to laugh because it hurt too much!

Neither of us have felt very photogenic lately, so I thought I'd post a couple pre-transplant pictures that we took up here.

Here are a couple from our first day at our hotel.

Grandpa is reading to Jade in our room. Jade took her first dip in the pool!

We arrive at Stanford Hospital on Tuesday.

Our support team.....

The patients.....

I think we're going to enjoy some Chinese take-out for dinner tonight. There are a lot of Asian restaurants in our neighborhood here. Mom and Dad both send their love to all. Thanks to everyone once again for your prayers and good wishes.

Tuesday -- It's my turn now -- Pete

Hi everyone -- Joy has left and Joan is not up to writing today. Addie has also been keeping a low profile on the couch. We spent part of the morning getting better acquainted with her bucket of meds; some to be taken at 8am, some at 10am, a few with lunch, a few more at 6pm, and finally, the last at 10pm. I have my cell-phone set to remind me. When it went off at 2:30, I was reminded to go to the the gym, but that's back in Morro Bay. Not today. I did go for a walk to check out the Whole Food market. It's like a giant New Frontiers market! I'm looking forward to a return trip! Luckily, Joan's friend, Kata is here to help! I went in to check on Joan this morning. She wanted me to give her the injection she has been looking forward to every morning. Just as I had rubbed down her arm with the alcohol swab, she felt queezy and laid back down on the couch. Kata was chopping ingredients for her "healing soup". I left the room for a few moments to check on Addie. When I came back, I knocked on the door. I heard Kata say she'd be there in a minute. When she finally came to the door, she had a pan in her hand with what I thought was ingredients for the soup she was preparing. Well, not so. Joan had just lost it and the pan was what Kata had found just in time! We had a good laugh. Even Joan was laughing! Addie and I had some of Kata's soup for lunch. The lentils, carrots, celery, chicken broth, and seasoning were very satisfying. Joan stuck to her chicken noodle soup and crackers. There's plenty more if Joan is ready for some tomorrow. Both Joan and Addie have been sleeping most of the day. I did take Addie out of the room for two walks up and down the hallway. Joan has been up to walk around in her room a few times. All in all, both are doing well, considering they have just been "home" a few days.

Before I sign-off, I do want to take this opportunity to thank all of you who have helped out in so many ways! We have all felt surrounded by your support and love! Addie and Joan are doing well and I'm sure it won't be long before we can all be home in Morro Bay again. I have to get there in time to harvest the corn! Regards and love, Pete