one day at a time

It is Saturday, July 31 and I am back at the apartment. I have been forced to make the feeding tube my friend and it came with me. Nazi Nurse Steve makes sure I get every single drop before he disconnects me. (It runs for 12 hours and provides 1000 calories.) It doesn't seem like much but my weight is up to 120lbs. Hallelujah!! I still eat during the day. It is sometimes difficult but I try anyway.





I left the hospital Thursday evening. It felt really good to be at our Florida home and the first thing I did was walk Buddy around the gator pond. He was pleased. He loves PJ and continues to go from one of us to the other. That's alright, I am confused as well.





Current standings in the medical situatition: Omaha has declined us! They will take us on as far as evaluating the need of a new liver, but "there does not appear to be any stomach or intestinal problems." It does not seem to matter that there is no way the liver can be transplanted without the removal of the adhevesives that have grown in and around the stomach, or the intestines. Its all or nothing. The great news is that Kaiser and Dr Pauley's group are really on our side and fighting for us. They have not given up on Omaha.





Our other hospital of choice is University of Pittsburgh. Dr Pauley is attempting to talk to them but I will be very low on the MELD list for a liver. There are many folks here waiting for a liver with a fairly low MELD score. I was listed for 3 weeks before I got my chance but God has another plan. I am not so sure that Philadelphia is in God's plan either. So we wait day by day.

The final straw would be back at UCSF, Dr. John Roberts says he can do the surgery, I am not so sure he has ever done one before and besides I am back to waiting 3 years, which means I may not make it that long. What to do! What to do!! We certainly do not know and have hopefully put it all in God's hands.

On a more positive note I am feeling stronger everyday and can not wait to get back in to the gym. I want so much to have some sort of normalcy to my life. I just really want to get rid of this water weight and look somewhat normal. Besides it throws my balance off. I want to swim, to ride, to hike and this winter to snow shoe.

well, I think I will close out. I am falling asleep

Special thanks to Julie, Albert & Ajay for the beautiful, flowers and fun. May a liver come real soon to Julie, another thanks to my cuz for his funny and inspiration, emails thank you from the bottom of my heart.. Then special thanks to my very good friends from the POS who drove all the way down to see Buster & Zoe. They even sent me a towel with their scents on them. You guys are the best. Thanks from my heart to the John Nelson family and all of the guys down at the station. Thank you Fred & Jennette Kratiz who have so lovingly taken us in to their hearts. Jacksonville would not be the same without you both. Thank you for all the concern and support from the Mayo Clinic Transplant Support Group. You guys are the best and we wish all of you a future of health.

Thank you for letting voice my "thank you." T hank you all for reading my story and I love comments. Thanks Doug, Rob's friend, please continue to read and comment it helps so much. One more last note... "HEY, I wish we were there with all the folks at the Hankins Reunion. Please send photos and know that we are there in spirit. Besides we will be there once I am healthy again. It is a personal goal of mine."

Love to all and stay with God. Steph & Steve

Bodie Aldrich Dawson

Bodie Aldrich Dawson Weighed 7lbs-1oz, 21 inches long, just a few minutes old.

The Next 24 Hours

July 18, 2010
Monday



Monday morning we had a visit from the sweetest liver doctor. He had met with all of the liver docs and they decided that what I needed was a liver with multi-visceral transplant. In English that means a transplant of the liver and any bowel, stomach or pancreas that precludes a liver transplant. One of the doctors explained it like removing a cassette and inserting a new one.



There are only 4 centers in the whole USA that actually do these transplants. Mayo suggested Omaha, Nebraska at the University of Nebraska Medical Center(UNMC) as being the best. Our second choice was Indiana. I am not sure of the medical center but we were told that it is a good center as well. We will still have to be accepted by UNMC and until then everything is in the air.



Kaiser and UCSF got together and had a pow-wow and decided that I needed the transplant. They could no longer help me and that I needed to go to Omaha as soon as possible. This made us happy and once again Kaiser comes through for us.



We have to jump through some hoops to be accepted, one of them being the weight issue. I am down to 114.7 lbs and this is unacceptable. So we decided to have a feeding tube placed. I hate it! But hopefully it will put the weight back on. The good thing is that I can eat and drink while I have it in. Boy, it is very uncomfortable.



Kaiser wants me to leave for UNMC on Tuesday, but I am not sure that I will be ready but we will see. Mayo doesn't think I will be able to go commercial with my abdomen drain and may have to go on their emergency medical flight. How cool that would be.



Monday, July 19, 2010

Bodie Aldrich Dawson made his not so quiet presence into our world. He was very angry about being born and let out an impressive squall upon his entrance. He is beautiful, pink, chubby and a very peaceful baby. He weighed 7lbs 1oz and was 21 inches long. All he does is eat, sleep and mess his diapers. Other than that he is a good, sweet baby. Heather is really enjoying him.

Ruby was a bit hesitant at first, but when they unwrapped him and showed her that he was the baby same as in the books, she accepted him just fine. Now she loves him and is totally fascinated by all of his care.

This has been another interesting week and we are still in God's hands and leave it all to Him.
I have written everything up to date and will continue to inform you all what is next. Please continue with your prayers and any emails or comments. Please hold your cards until we find out where we go next.

God is Great,
Steve & Steph

Your not gonna believe this.

Friday nite July 16.

10:00
We were enjoying a movie in the movie room, watching "Crazy Heart" with
Jeff Bridges. Its a sad movie so far, we never got to finish it.
Steve's phone went off. It was THE CALL. Mayo wanted me there by 11:00. So we shut down the movie and ran home. Gathered a few things, washed my face & brushed my teeth and headed to the ER at Mayo. I was the 3rd transplant patient that nite.

We were such an emotional wreck. We were nervous, scared, & elated. We were praying continuously for a successful surgery and for a quick recovery.

About 8am they wheeled me in to the OR and the last thing I remember was telling myself that I am in God's hands and He has a plan for me. I must accept whatever He decides for me. Then I went to that sweet place of sleep.

12:30pm
I woke up and was very relieved and thrilled. I had a new liver and in just 4and a half hours. (that should have been my first clue!) As they wheeled me past Steve, he was talking with someone and the look on his face told me the whole story. Then he came in my room and there were tears in his eyes. At first I did not understand, then he confirmed the story that I did not want to believe.

They were unable to transplant. The liver had expanded so much that it attached itself to other organs in my abdomen. Our surgeon called in a senior surgeon and they decided that it was too risky for a transplant.

I was crushed and Steve and I cried all day long. The next day was very difficult as we called our family and gave them the disappointing news. My mother and sister were especially hit hard so soon after my father's passing.

I am very tired right now so my next blog will be the second part of this story. Fortunately it doesn't end here. Please log on (hopefully) tomorrow to catch up. Any comments or questions please send them. Also so sorry for not answering my emails.

stay tuned.
God is with us,
Steve & Steph

Just blowing the day away.

Things are pretty slow these days. Just working out, swimming, lots of walks with Buddy, an occasional game of Scribbage, and tons of cooking and eating.

I am feeling pretty good, just get tired easily. I have learned to pace myself and take frequent naps. Other than that, things are good. (Except the cramps at night.)

Tomorrow we go for a blood test (to determine meld score.) It should be be lower than last week but then we never know for sure. Not a good thing, we want it high. Then we go to a support group meeting. We enjoy these as I have said in an earlier blog.

Steve goes to the support for caretakers only. He won't tell me too much about them, I think it is an opportunity to complain about their patients.

Rob & Heather are due any day now. She is dilated and having periods of contractions. We are so anxious, it is not for sure but I think they are going to name him Bodie Nash. I have no idea where they came up with that one.

Buddy is finally beginning to relax and enjoy himself. We take him for a 40 min walk every evening. When we finally got home, he started running circles all around the apartment and was having a ball. He does not seem to be so needy either.

I am going to post some more photos tomorrow, so hang on.

I want to thank Jenny & Jerry, Vic & Kathy, Jim & Dee & Becky & Lance all for sending cards, well wishes and prayers.

Wishing we were home,
steph & steve & buddy

More Zoo Guys

This guy was actually asleep in this position. I don't know, maybe he had a bad case of gas.

The ape is on the left.

Who couldn't love that face?

This a crocadile, a much more aggressive reptile than the Florida alligator.

Jacksonville Zoo July 4, 2010

African Elephants

one of the very strange but beautiful birds
What a life!

Just Another Day

1. 

Steve at Pointe Verde beach. It is a beautiful and clean beach, not a lot of folks probably because it has expensive hotels on it. No one can own a section of beach in Florida, all beaches are open to the public.

Hey all,

I am so happy. Mom made a decision to wait for dad's memorial service until I come home. So far everyone I have spoke with are pleased as well. It will allow many of his friends and family from other states to set the time up to get here. Now I do not have to worry about not being there.

Buddy made it safely to Jacksonville. He arrived 30 minutes earlier than scheduled and we were at Mayo when they called. So we hurried through our business and drove like fiends to the airport. When we entered the cargo area there was Buddy standing up on top of the counter. They let him out of his kennel, took him for a walk and then gave him the run of the office. When we first walked in, he stopped and stared at us as if we were a ghost. Then he jumped off the counter and came running up to us. I think he was relieved that we were there.

Poor guy he is very needy right now and the first two days we did not leave him at all. Then Sunday we went to church and left him alone. When we got back we could see him through the window and he was sitting on the dinning table waiting for us. He was so happy to see us. Steve disinfected the table top. Apparently he did not think it was so cute. Buddy is finally beginning to settle down some.

We went for a walk and took Buddy to the Jacksonville Beach. He liked walking in the water but then the waves chased him back. He'll get use to it.

Things are pretty dull around here. I made some no salt pickles today. I haven't tried them yet but I
have my doubts about whether they will be able to replace "real" pickles. We will see. Yesterday I made
salsa out of some fresh tomatoes. I put one pepper in and it is spicy hot.

Tonight I was having leg cramps like usual, so I went walking around the pond. Then decided that I would put a bathing suit on and just jump in the spa. Who cares who sees my funny body. (My dad said I look like a toothpick with an olive on it.) Its a great description too. Anyway it was fabulous so then I went swimming. Oh it was heaven! Of course it was 11:00 pm, and no one was out there.

Actually I am feeling fine. I just have to nap a couple times a day then I am good to go. I enjoy cooking and am eating better, but alas no weight gain. I walk a lot and work out every other day in the gym. So things are looking up. I am very anxious to get that magic phone call, especially before my meld score starts to fall.

Well, it is late so I'll let you go. Please remember your prayers for us and I love comments.
Be with God.
Steve & Steph

A difficult & dark day

Today my father passed away. I want to go home soooo bad. But no one thinks it is a good idea. More than anything I want to be there for my mother.

He returned to the Lord just recently. He told me that his body was taken care of but now he had to take care of his soul. He had Last Rights on Friday when he fell into a coma. He is with the Lord and no longer feels pain, disappointment, discomfort or sadness but is joyful in his heavenly body,and in great company.

We will miss him so much as he was the head of our family. Steve & I relied on him to get us through the first 20 years of this disease. I know that he is with us in spirit.

That is all for now.
Pray for my mother for she has not been without my father since she was 19.
Go with God,
Steph

Photos from the Kingsley Plantation

These are photos of the Kingsley Plantation located on the St George sound. It was built sometime around 1830's and continued to be a money maker until the late 1800's. Mr. Kingsley did not advocate cruelty to his slaves and was a leader in support of the black men & women.

The first two photos are of the cooking & house workings (spinning, sewing etc.). Sorry about the same photo, but I WILL conquer this website. The third photo is of the main house itself.

The main crops were indigo, a blue dye that was highly valued, and an island cotton crop that was easy to dye blue. It was also valued in the European countries. Needless to say Mr. Kingsley was a wealthy man.

His wife was from Brazil and was in charge of taking care of the house, gardens, and the needs of the slave families. She was from Brazil and was of Spanish descent. At the time of the Civil War Florida passed a law that it was illegal to marry anyone of "color." So Mrs. Kingsley packed up her kids and moved to Jamaica where she lived the rest of her life.

There was only rubble left of the slave quarters, but you could see how small they were and they did most of their cooking out doors. They also were able to have their own gardens.

I know it is not much, but it was very interesting. It was not such a grand plantation as you see in Georgia, but it was successful and took care of a lot folks.

More photos tomorrow.

steve & steph

Just an update.

Just wanted to update a few things and to tell everyone placing photos is not easy unless I do it one at a time. Please be patient and I'll get it.

We bought a small Weber gas grill. It is very portable and very cool. Its small but works awesome. We rushed home and bbq'd chicken with a mango sauce. It was delicious. It cost a little more than we wanted to spend but I think it will get a lot of use.

Buddy will be leaving tomorrow night. He arrives at 10am in Jacksonville. I can not wait. My poor little guy is so confused about where his home is.

I have a ultra sound tomorrow morning to see where my congestion of fluid is. I don't think it will show much. But then you never know. Also had a blood test and my meld score did not change. That's a good thing. But no higher please.

We also have a dinner date with our support group, I can't eat much but it is good to get out. I know that dinner with a support group sounds almost morbid, but these folks are a lot fun. It is not like any support group I've gone to. (Which I never went back. To depressing.)

That's all folks!
Thank you for your prayers and I love to hear from you.
Steph

Just relaxin' and enjoying Jacksonville

Hey all, Thank you so much for all of your thoughtful comments. I am never sure if I am boring you all or what. Please keep them coming, it motivates me to write more often.


We have finally finished "nesting" and are comfortable with everything. I love my kitchen and enjoy cooking again. Steve has his satellite office all set up, all he needs is his fax machine working.


Our day usually begins around 7am (something different for me the early riser). Then we get dressed and breakfast, every other day we go to the gym (in the complex) and work out for aprox 45 minutes. Then we go home eat again. Steve works for a couple of hours, I nap. Working out really wears me out. Then we eat lunch, decide what we want to do for the day. So far we have gone shopping for things for the condo, but we are finished (hopefully). All I want is a BBQ grill, to grill on. Then we eat dinner (after a snack at 4pm.) Then we go for another walk, sit in the spa or play a game of Scrabble out by the pool. Then we are usually in bed between midnight and 1am. Another new habit for me.


This weekend we went to dinner with some other liver-wanters. We met in the support group and all are from Calif. (go figure) We are all either new on the list or still waiting for evaluation results. It was a nice evening and we did not talk Liver Transplant at all. What a nice change. The restaurant was very nice and we sat outside on a beautiful evening.


Eating out is a real challenge for me as I have to watch my salt intake. Not easy to do. I often modify the order and look forward to the day when I no longer have to watch what I eat and can eat those wonderful dishes.


Saturday we went in to Jacksonville to a huge Arts/Farmers Market. They have the best produce so far. Of course you are buying from the farmers themselves. They also had all kinds of food and entertainment. It was wonderful. One thing different from these farmers markets is you can bring your dog with you. NOT allowed in Calif. We are going again this week and taking Buddy.

On the Fourth of July we went to church, then home for lunch, then decided to go to the Zoo. It has been years since I have been to a zoo and found it relaxing. The best part were the birds... they had the most extraordinary birds from all over the world. They were exquisite and very strange. Most were very large and colorful. We also enjoyed the chimps and apes. Everyone else was asleep in the afternoon heat. Oh, another treat was that I got to feed stingrays. It was very strange at first but then I got the hang of it and they came by just to see me. I tried to get a boy and his mom to feed them as well, but they just couldn't do it. Steve says he fed one, but I never saw him. I will post some photos.

Then after a delicious dinner of fresh salmon and sweet corn on the cob, we decided to find a firework display. Well, even though you could see fireworks going off all over the city, it was difficult to find them. Someone told us to go to the beach,but the traffic...yuck, didn't want to do that. One of the strange things was that you can have your own firework display in your own back yard. There were fireworks everywhere. So we just went and got an ice cream and called it a night.

I am feeling fine, some days very tired but most are pretty active. I go once a week for a blood test, then once a month I see a doc & the nurse coordinator. I like this schedule a bunch.

Buddy is being shipped on Thursday night and should be here Friday morning. I am so looking forward to his arrival. But poor little guy, he has been all over the place and is so confused. I think he misses mom & dad. But all is ready & all they have to do is put him on the plane.

Dad has had a hard time of it and has been in ICU since Friday. They were unable to do surgery due to cardiac complications. They kept him with his endo-trachael tube all weekend. He has been very uncomfortable, they finally removed it today. We still don't know if the surgery will take place or not. He is fairly good spirits despite it all. Please he needs prayers but I know he is more at peace since making it right with the Lord. I am so happy about that.

Well, that is about all. I promise I am going to try to write more often so my blog is not so long and drawn out. Thank you for reading it and please do not forget we need lots of prayers and comments.

Love to all, Steve & Steph

photos coming...

More Photos of the Inn at the Mayo Clinic.

Here is Steve in our gourmet kitchen. Now maybe you can see why I want a REAL kitchen.

The living area and the bedroom. Pretty darn small; there wasn't even enough space to put our luggage away.

The desk represents Steve's Office. The rest is the "living room."

The kitchen, equipped with lop-sided electric burners, (2 of the them). Lots of cabinet space cause there was only 3 plates, 3 bowls, 4 glasses, and 3 piece eating ware. The knives were more of a danger than a cutting utensil. (We brought our own, thank goodness.)

Well enough of the "hole." It was very useful during all the evaluation period as the hospital is just down a beautiful breezeway. Oh, and the 'hole' is owned by Marriotts. My opinion of them is a little lower than before.

Okay, once again stay tuned for more photos ... of the beaches and Amealia Island.
Steve & Steph

Photos of the Clinic

Notice the briefcase(man purse)... everyone walks around with one. It has your daily itenirary, letters from former docs, CDs, test results and all kinds of stuff that the docs might need to look at from your last hospital.

This just one of the beautiful gardens and ponds at the clinic. They keep beautiful grounds and loads of walking paths. We saw our first "gator" in the pond the other day. There are gators everywhere, there are even some in our pond at the Retreat.

This the main entrance of the Mayo Clinic, next week I will take a photo of the lobby, it looks like the lobby at an expensive hotel.

Well, I managed to get it together after about 10 attempts. More will come.

Stay Tuned,

Steve & Steph