Photos anyone

Here are some miscellaneous photos. Bodhi at approx 4 weeks in his pillow chair. Skinny Bodhi, you would never know that he eats constantly.

A terrible photo of me with that awful feeding tube. This was the last day at Mayo before flying to Pittsburgh and the last day that I got to visit with Buddy. I think he liked the wheel chair.

The couple are some of the sweetest, Christian folks that Steve & I met at the Baptist church. Although everyone at the church were incredibly caring and concerned folks. We really enjoyed Fred & Janette and they came to see us every day we were at Mayo.

The family standing behind me are from So California, Julie, is waiting for a liver with her is her husband, Albert and their son, AJ. They are wonderful friends and AJ is a jewel. We pray for them and that her transplant is success and uneventful. We had several friends such as them.

This is the air ambulance that we flew us from Florida to Pennsylvania. Steve thought it pretty cool. Sorry it is not a good photo, Steve took it with his cell phone.

That's all for now.

steph

The work has begun

Saturday, the 28th of August, in the year of 2010
Hey We are really sick now!


In the past when they told me I was sick, I just went "yeah, yeah, that's what you think" and then went on my way. I was able to do whatever I wanted.



NOW...things are quite different and I do believe that I AM REALLY SICK. Sometimes I wonder if they (UPMC) are conjuring up the ill feeling. Anyway I am going to follow the rules, do everything they say ('cept a bone marrow). Its in Gods hands and I know it is going to be difficult but He is here with us.




Presently,we show up every morning at the transplant center where we get a SPA tx with Lasix. This is so that hopefully the fluid will leave my body. I have been doing this treatment for 11 days. Now they think I have an infection and so now I have two antibiotics via IV which takes about one & one half hours. Then we go home after all that (approx 1-2pm) and do 3 more antibiotic treatments. Steve does them and I must say he does okay, it's going to take him a while to get a rthymn. It is really no big deal. But I am not so sure about all the chemicals going into my body. This is going to go on for at least 4 weeks.

I will give you a little idea how this goes... up at 5am, down stairs for a bagel and eggs (provided by the Inn) by 6:30 then off to the hospital for our treatments. First a blood draw out of my PICK line (permanent IV), then the SPA treatment plus a bolus of lasix, then the antibiotics. One which takes an half hour and the other 2 hours. Now it goes that way if they don't want to add something to it. Like today, they ordered a 4 hour Phosphorus / Sodium IV which doesn't make sense to me because it adds to my ascites. We are going to try to talk the Doc into a Phosphorus pill instead. Otherwise I will be soooooo full of fluid and terribly uncomfortable for the next 4 days. If we are lucky we will be home by 4 or 5pm. We will be exhausted. This going to continue every day for the next 4 weeks "at least."

This, my friends & family is how it goes. Not to worry, besides a sore bottom and back from sitting all day, I bring my computer, Bible Crossword Puzzle Book, and cross stitching. Plus there are a lot people to talk with and get to know, but then they are all sick which gets old. I also pray a lot.

I want to thank you all for taking the time to read my blog, for all your encouraging comments & emails. I want to thank Gail from bible study for the beautiful card full of encouraging verses. Thanks to my sister, Jane for the VERY annoying but thoughtful card. Thanks to Frank for your entertaining phone calls, Chris for her humorous emails and please Debbie take care of yourself. No more accidents, OK. Oh and my Aunt Betty for having the equine dentist to look at Buster & Zoe.

We love you all and miss you all very much.
God Bless you all,
Steph & Steve

God is working in me.

Wednesday
August 25, 2010

I think I am beginning to come to terms with all of this. I am feeling better and feel I that God has His Hands in this. We must believe this because without Him, we could never make it. How do people do this without knowing Jesus?

We met with all of the docs today and we felt much better when we left. They are telling us everything and not leaving anything out. It is very frightening. They admitted that they are not sure of the outcome and that this going to be one of the toughest battles we have ever faced. They were very kind, honest and caring. They truly consider my well being and will not leave one stone unturned. I think I have changed my attitude, Thank you Heavenly Father. We left feeling that we can possibly do this. At least we are going to let the docs be in charge and not fight them. In other words, we have gained a great deal of confidence in them. Besides it is God's Hands anyway.

We go to the clinic every morning at 7:30am for antibiotics, SPA treatments, bloodwork and anything else they can think of. The nurses are great and very kind, the chairs are comfortable and I started a cross stitching project. Not my favorite form of needle point but it's easy and there are many patterns to choose from. Don't be surprised if everyone gets one for Christmas, another project is a Bible Crossword Puzzle Book, and of course my computer, cards with Steve, and a little nap. We take our own lunch so its a warped sort of picnic. This is supposed to go on for the next 4 weeks, then who knows. I still don't like sitting on my fanny that long every day.

Besides all those IVs, we come home and do 3 more IVs each day. Steve is very good at it, a bit anal, but very thorough. This will also go on for the next 4 weeks.

There is a beautiful park with an amazing garden and an incredible Natural History Museum, I want so much to visit both real soon. There is really a lot of things here, I hope & pray that we can take time to visit and relax some.

Great News! We got an apartment, its very nice with 2 bedrooms, 2 baths, modern large kitchen, lots of windows and a nice quiet location. It won't be available until the 15th of September, but apartments such as this one are difficult to get. Once again Steve used his charm and persistent personality to get what we wanted. He is so awesome. Now Rob can come visit soon and possibly my good friend Kim and of course Mom. I am very relieved and will be happy ONCE again make nest.

I hope this blog lifts every ones spirits. I know all your prayers are at work and being heard by our Lord. I still have so much to ask for from Him. Thank you all for reading and commenting on my blog, we will never be able to tell you all what it means to us. At least we are not alone in prayers and love.

Forever Needy in Prayer,
Love to all
Steve & Steph

A Strange Sunday

August 22, 2010, Sunday

We were unable to make it to church again today. I have a number for a chaplain from the hospital and plan on calling him tomorrow and see if he can meet with us. This a very Catholic and Methodist area. The churches are cathedrals, very old and very big. We are a bit overwhelmed by them even though I know that is ridiculous. I am sure that the Lord will provide us a fine place to call our family. The church that we connected with in Florida still keeps in touch with us which is very comforting. The MOST comfort that we have received is when Pastor Ed phoned and prayed with me. Gail from my bible study group commented that Pastor Ed brought us up for prayer in all 3 church services. I can't tell you what that means to us and how it lifted up our spirits. We are grateful to Crossroads Church, Pastor Ed & all who comment and support us in the Lord.

We are beginning to understand the way the visceral transplant docs work. They are very interested in me and consider me very "frail," Steve just laughed. We learned that they are happy to share information all we have to do is ask. We see a doc at least 5-6 days a week. I must get over the liver transplant and realize that this is a whole different bag of worms. The doc told us today that I am very sick, in bad need of a transplant and I should be on the list by the end of this week. I still have moments of self pity but I do believe they are becoming fewer and fewer. I still pray for strength and the courage to place it all in God's hands. After all He is the one who brought us here.

Presently I am going every morning for those SPA treatments(IV for the fluid on my tummy). They do not believe in paracentesis (pulling the fluid off through a needle), the result is instant relief and it is very common practice in the liver world. In the visceral world that means there is a possibility of infection in the abdomen which would prevent my chance of a transplant. So I learning to just cowgirl up and deal with it.

These docs keep real tight reins on all their patients and we have not heard one bad thing about these docs, their patients love then, and the people who work with them love them. I have a lot of adjusting to do.

Today, I felt pretty good and not so moody but the day went from nice to challenging. Actually, it is kinda funny now. First of all, after the IV and a bolus of lasix I had to run down the hall to the rest room. Everything was okay until I stood up and realized that I did not have my one and only warm jacket on completely. I dipped the sleeve and the corner into the toilet. I was crushed and felt really stupid. I had to take it off and put it in a plastic bag to bring home to wash. Well, I was cold for the rest of the day. (The hospital is very air conditioned and freezing)

Then we got the okay to go home, so we were heading out the door very happy to have the rest of the day to ourselves. We stopped at the gift shop to see if they had another sweatshirt for me. Well, they didn't so we are walking out when all of a sudden my left foot tripped my right foot and I went down on the tile floor, the last thing to hit the floor was my head. What a fright I caused. They called the trauma team, my doc came running down the hall, nurses surrounded me and of course Steve is practicing his EMT training. Oh was I mad! I told myself that the Lord is MAD at ME. Which later when I finally calmed down I realized how stupid that thought was. Another hour and half in the ER and a CTScan of my head, they were going to let me leave. Then Dr. Costa called and said he wanted me to stay in the hospital. Steve was awesome. He talked Dr. Costa out of it (after all he is a trained EMT! giggle) and the rest of the day was saved and pleasant. I feel that this happened so that Dr. Costa has a greater respect for Steve and that I am NOT "fragile."

I want to thank all of you who sent comments and emails supporting me. You all are so tremendous and you give me such a lift that it is hard to explain. Thank you all for all your prayers, thoughts and best wishes. The Lord has blessed us with so many who care about us that it brings tears to me. Please continue to do so, it not only means a lot to us but to my family as well.

Well until next post, my prayers are with all of you always.
Steph

Still angry in Pitt

Wednesday, August 19, 2010

I am still very angry at God. I should be planning my trip home by now, instead I have to under go a horrendous transplant that is (without any problems) going to keep me here for 6-7 months. And during the freezing weather months. I want to come home so bad. Today I hate it here. I don't like my Nazi doctor nor the old and scary hospital. I feel like I am just a broken machine to the doctors, very little personal contact or support. Just "do what I say and keep your whining to yourself." No one tells you anything or what the results of all the tests are.
Yes, I am laying my burden on you all. I try real hard to pray, keep myself in God's word and think of those things that are joyful. But it is still so difficult, hopefully God will hear my prayers and relieve my heart from this burden.

I underwent an angio/vena gram yesterday, and of course no one has told us the results. We won't see the doc until Friday so hopefully he will be able to enlighten us. I have a cardiac stress test tomorrow, (the second one in two months). They are no fun because they give me meds that make my heart rate go to 160bpm. You can actually see my heart beating thru my thin chest and it is very uncomfortable. Fortunately it doesn't last very long. Then more IVs and blood work on Friday. My tummy is sooo big and feels terrible. Yet they still fill me full of fluids. I don't get it. They don't explain why or what the benefit is. I am so confused.

I had to spend the night in the hospital after my angio, once we got out we drove up to Washington Mountain (in the middle of Pitts) and looked over the whole city and saw all 3 rivers. We went to a little village and had lunch, then home to rest.

I am looking forward to moving into an apartment and being able to nest. This little studio is getting crowded and uncomfortable. I need something that is light and spacious. The apartments we saw have a great room with kitchen, living room & dinning area all in one. The kitchen is huge and has a breakfast bar. I really like it. Unfortunately it is going to be a while before one is available.

I apologize about this blog it is a downer, but I felt I had to write anyway. Please keep up the prayers as I really need them.

Tryin for better more positive spirit next blog.
steph

Tryin to hang in there.

August 14, Saturday. Today was a good day.



We had a protein, they call it a spa treatment but it is anything but a spa treatment, IV and they finally pulled my staples so now I can wear clothes and my incision can heal. We did that at 7:30am & made it home by 11:15. We get to do it all again tomorrow morning. I have a pick line so they don't have to stick me they just plug me in.



I don't believe that I have told you about Pittsburgh We are definitely ducks out of water here. This the BIG CITY. The architecture is absolutely beautiful and some of the buildings go back to the 1700's. There are some incredible homes that are probably historic but across the street there could be slums or abandoned buildings. The city is laid out like "hey, I need to get across this field. I think I'll make a road so I don't have go around." It is absolutely crazy and no one pays any attention to traffic laws. We have never been so lost just trying to go down 5 blocks. We end out in an field. They don't take care of the roads because they are too crowded and they are too busy tearing down old buildings. It is actually worse than Boston, if you can imagine that. There are rivers everywhere and tons of bridges. Hopefully they don't date back to the 1700's. This is a university city with several well known Universities. So students are everywhere. This is where my Dad went to school. He was a math? engineer major and played football at Carnegie Tech, now known as Carnegie Tech Mellon. I sure wish I could talk to him about it. There are several more but I could not tell you anything about them.

We are going to look for an apartment and it looks like I am going to have to learn to live in the city. It is so noisy 24 hours a day & night. We don't want to venture too far from the hospital we may never find our way home.

We are (mostly me) still having moments of depression and tears but I have surrounded myself with God's Word and try to focus on faith and finding joy in all this mess. Having a visceral transplant is going to be very tough and require a lot from us. It is very scary. I pray everyday and night that they are able to separate the liver from the intestines and just transplant the liver. If you are praying for me please do the same, it can be done only through the work of our Lord.

Okay, I miss my family so, my friends and pray that this time next year I will be back in the saddle. We are very lonely although the people of Pittsburgh appear to be nice and very accommodating. Hopefully, we will make a connection with a church family and find some local support. They don't have any support groups here just international groups. How personal can that be?

Yesterday we met with a social worker and she gave us some information about fund raisers. It sounds strange to me because I feel that there are so many more needy people out there. But she encouraged us to look into it. Pittsburgh is twice as expensive as Florida we are probably going to run out of money. I feel very funny about this but if anyone has any ideas we would be happy to hear your ideas. I know one thing I want to do when I get home I want to promote donor organ awareness. People are just not aware of the lives they can save and the lives they can improve. Beware I will be on a mission.

That is enough for now, so saying goodbye from the foreign land of the great Pitts.
Keep the prayers, the comments and love to all,
steph & steve

It'a gonna be a longggg yellow brick road.

It is Wednesday evening, August 11, 2010. Things are nice and quiet for the moment.

Yesterday was crazy, we rented a car, got lost several times, grocery shopped at Whole Foods, put everything away then fixed tacos for dinner. And all this after a full day at the clinic. I was pooped today and drag my poor tired body all over the hospital for tests, infusion and signed tons of papers. Went to another regular (all be it, an incredible grocery store) for regular food and paper goods, then home to make spaghetti. Fell sound asleep while Steve worked and watched the sauce. Woke up struggled to eat, watched "Bad News Bears" from 1976. Now I am finishing my blog.

I have a feeling that my days are going to be like this for the next 2 weeks at least. Tomorrow I have a out patient surgery at 5am. They are going to put a stent in my kidney hoping that output will increase. I have had this blocked kidney since I was born, but Doc K doesn't want to take any chances. If it doesn't improve function, they are going to just remove it. What ever.

Buddy is home with my mom and very happy. I don't think he liked Florida. Too hot and too many people. He came home ate tons, drank a gallon, went outside marked his territory and then slept in my dad's chair for 4hours straight. I take it he was pooped. Thank you PJ, Ellie, Kasey, and John Nelson. As much as I miss him, I will always leave him there with my mom. Besides he loves her.

We are looking for an apartment (hi rise type is all there is) and Rob (my son) is chomping at the bit to come visit. Lots of medical evaluations once they slow down I really want to see him. I wish the whole family could come but Bodhie is to0 young.

Anyway that is all the news I have, so until next time, keep commenting and sending prayers to our Lord on our behalf. We love all of you for your interest.
God Bless You All,
Steve & Steph

A whole new road in our journey

Hey all, Thanks for hanging on to my blog. The reason I haven't been able to catch up is that I not only did not feel well but was severely depressed and believe me you did not want to listen to me whine and cry to you all.



Okay, the NG feeding tube was extremely painful. At one point it clotted off and they had to reinsert it. Oh, my gosh, the pain was ghastly. At least I talked them into taping it on to my face instead of tying it from the inside of my nose. (now I know what a bull feels like) That was tolerable. Then they put in another tube in my belly to drain the fluids. What a baby I was about the whole thing!!! But with God's help we (me and my nose) survived the whole ordeal.



Then they come (doctors, that is) running in and said I am being air ambulanced to UPMC in Pittsburgh, Pennsylvania. We have 2 hours to pack 2 backpack type bags with all we will need. Steve became a man on a mission and I had little to say about what clothes, soaps, books and that kinda stuff I wanted to go. I get here and I have few shirts that don't match the pants, very little make-up, no blow dryer and the good shampoo? who knew where that was? Poor PJ ran back & forth trying to make us happy. Never an easy task. We finally left at midnight (8 hours later) and arrived at 4am.



UPMC is HUGE and very old. The care is not up to Mayo standards, but I am learning diplomatic assertiveness with a smile. Besides after meeting the surgeons, especially Dr. Kareem, I am very willing to put up with anything (Right, we will see about that!) We love him, but he is very tough & demanding. But he actually hugged me before he left. He already is making a ton of changes. The very first thing he did was pull all the tubes. He says he hates tubes! He's my man! But he did not gloss over the hard work it is going to take. Steve spoke with our liver doc in SF, he said Dr. Kareem is the best in the world and the transplant guru. If he can't do it no one can. Our spirits lifted high to the sky.

It is gonna be a long and difficult road, but as long as I have him and God and Steve on my side, I know I can do it. Not to mention all the prayers that are bombarding Our Lord.

We are staying at an Residence Inn by Marriott, 3896 Bigelow Blvd, Pittsburgh, PA 15213. For how long we are not sure, but they will know where we are.

I have lots more to tell, but I am sure you are worn out from listening and me from writing. I promise I will try to tell more tomorrow. Gonna go see Doc K again tomorrow and start the battery of tests again.

Thank you all for remembering my birthday, having the tube pulled was the hi-light. It was enough.

Very Special thanks to PJ Palmer for all her help, especially where Buddy was concerned and the very difficult packing and shipping she did. I pray she will have a relaxing, safe and speedy journey home.

I thank you all for hanging on for me. Remember I love comments, especially funny ones.
all our love, steve & steph

Do I really want to do this?

The calendar says it is August 5 and I believe to be Thursday.

I have had 4 incredible difficult and challenging days. I pray that this is the beginning of some better days. I will not bore you with the details but I was a big baby, not very pleasant and became a challenge to all who had to deal with me. I am so ashamed but still very angry about all of this. The best part was that they gave me plenty of anxiety meds and they just knocked me out.

The doc's have been trying to get University of Pittsburgh to contact them so I can have a chance to get there. But no response from them in a week. Everyone is getting very anxious because they want to do a hospital to hospital transfer. If they don't respond soon I will be forced to go to Kaiser and wait there until someone decides what to do with me. It is very confusing because our coordinator at Kaiser says it is Mayo' job to take care of the transfer, but that does not sound right, after all Kaiser is the one who is going to be paying the bills right? Needless to say we don't have much confidence in Kaiser at the moment.

We are getting ready to send poor Buddy back to my mom. He is not very happy or comfortable when I am not there. When I finally get to come home he acts angry. I thank PJ because he has become very attached to her and she is home a great deal. Besides PJ will be leaving next week as well. There is no reason to have another caregiver when I am just gonna be in the hospitable.

I hope to have some better and more entertaining news for my next post. Gotta go shower and get ready for support group.

Mark, I have written you 3 times and had the wrong address but I will try again today. So Sorry.


Love to all,
steph & steve