Ok folks, here we go! I go to the University of Pittsburgh Medical Center Montefiore @ 5:AM on Tuesday, 23rd. The surgery starts @ 7:15 AM. It will take about 10 hours. We will keep you updated!

So I went to some appt.s on Tuesday. Wednesday was my big 8 hour day of appts. 2 nurses were talking with me and found out I had all of my large intestine and a gastric by-pass. They were grinning from ear to ear!!! They thought the Dr. could just put me back together and I'd be fine. Then the Dr. came in and said the same. So I get to have a 7-10 hour surgery on Tuesday the 23. No waiting for parts!!!!!!!!!!!!!This is great! I don't know much more the surgical team will call me before Tuesday to let me know when to be there and all that garb.

Stay tuned for the next amazing turn of events in my life!!

Thanks for all your support, love and prayers!

Sue

I'm in Pittsburgh!

Count Down

Ok - I leave in one week and one day. It's starting to get a little anxious for me. Let's see, we got the AC fixed in the house. Then Bob was fired. On our way to church on that 1st Sunday that Bob could go to church with us (because he didn't have a job), the AC in the Yukon quit! Just QUIT! Now we all know that this is not a good time of year to go without AC in a car. We got it in the shop and they needed to keep it over the weekend. It was quite a sight to all 6 of us in the Sentra going to church the next Sunday! Kara and Brad were in front and Bob, Dallin and Trevor were in the back with me on Bob's lap. Oh what a hoot!!!!

Marjon from the newspaper came over to interview us for an article for the Az Republic. She listen to our story and asked some questions. We entertained her for over an hour. She was very nice and compassionate. She said she would send a photographer over to take some photos for the paper too. Saturday, June 6, our story was released in the local area paper. I think that the big story goes in the Republic on Tuesday in the Living section.

The Cobra info finally came. We were able to pay that. Now we have to let that update and EVERYTHING goes back to normal.

The date has gone from June 10th to July 1st to June 24th to June 17th. That's were it stays. I leave June 15th for some undetermined time. I can't imagine being gone that long! Mom and Dad are meeting me in Pittsburgh. They are staying as long as I am.

Just keep your prayers with me and my family! Thanks for all you do for us!

Later,

Sue

Yesterday was a SHOCK

Shock, yes that's what it was like.  I'm still not over it but we will deal with it! On Friday at about 4:00 Bob's team leader call him here at home. He terminated his employment at American Express as of that time. He was told he fell below the 5% matrix he must maintain. This was in March and they received these numbers that day. Bob did the math and called them back because he was not below but at the 5% mark. HR said the they have to no go below 10% and he signed a paper saying that. Bob did not remember signing any paper like that. And they are always saying  "don't go below the 5%".

Bob has come home daily telling about people that have been fired for ticky-tack reasons. There have been several stories. Bob has not been worried because he has done nothing wrong. OH WELL - there goes that theory!

I felt so bad for Bob! He looked like he had just given me the death sentence. I have to have TPN (feeding tube food - about $1500 a bag that I use daily) or have this small intestine transplant that I should be leaving for in 2 weeks. The Insurance was already approved! We will have to get a new job asap and pay for cobra insurance so I can still have the operation.

So if you know of any opportunities for Bob, let us know!

Somehow, someway, we WILL get through this. We are letting the Lord lead us.  He knows the big picture.  We just know the here and now!

Pittsburgh called! 5-12-09

I got a call from Jocelyne from Cigna. She told me everything was in and I was totally approved with the insurance. I asked what I'm to do next. She said my referring Doc would send a request to UPMC for and evaluation. I called Dr. Shapiro's office and told them that Jocelyne called and that they were to request me to go to UPMC. But of course, they were used to this but I wanted to know what I need to do. They told me to get all the records I can for anything I can think of!  Within 2 hours, UPMC called me. After several question she told me she would get all the info from the Dr.s and the hospitals.  So I don't have to get as much info as I thought.  She Said it takes about a week to get all the info. then she calls and makes an appointment for me in Pitts.  Dr. Kareem is out of town until the end of May.  Appointments for evaluations start on Wednesdays, so possibly June 3rd will be my appt.

I called Pitts. Bishop Johnson and he is checking in to a place for us to live in Pitts for our duration. I have about 3 and 1/2 weeks. sounds like a short amount of time!

Hope all goes well!!

From Sue

Got it! 5-10-09

I got the call on Thursday from Dr. Shapiro's office that they faxed in my letter I have been waiting for now for 4 weeks!!!!!!!!!!!!!!!! Yeah! Now the waiting game is for the transplant nurse to call and set up an appointment for my transplant evaluation.  That takes 10 to 14 days in Pitts. My Mom and Dad will meet me there. I got 2 web cams for Mother's day so we can see and talk to each other while I'm gone. I have no idea how long it will take to make the appointment in Pitts.

I have a couple of people to talk to here about places to stay in Pitts.  Barb is from there and Mike worked there for some time. We are also going to go through the area Bishops to see if they know of any places to stay or rent.

It's getting closer! I did go to the Dr. on Thursday and found out I don't have swine flu but I got put on antibiotics for strep throat. Its Sunday and I do feel better. I did get to the point where I would rather spit than swallow because my throat hurt sooooooo bad!

I also found out that once you have a transplant, they don't want you to have elective surgeries, tattoos. or piercings!!! SO - I need to have that boob job complete with piercing and tats before the transplant!LOL!

Chat Soon,

Sue

Still waiting!!! 4 May 09

I'm still impatiently awaiting the day my very great, awesome, intelligent, amazing Dr. writes my letter of medial necessity for the transplant. Once he gets around to that , it will only take 1-2 days for the transplant nurse to call me and set up my appt. for the evaluation in Pitts. That takes 10-14 days and then they let me know if I am on the transplant list. My Dr is so busy that this could take weeks. In fact it has been 3 weeks so far. I'm not good with waiting and not knowing what is going to happen when! I need a place to stay in Pitts. but I don't know when!!!!! If anyone know anyone with a mother-in-law suite or appt. that we could rent from - oh - 4 months to 18 months, just let me know! It would be nice if it were close to the U. of Pitts Hospital. You know, less than an hour drive!

Oh the times are frustrating. I had no idea how mentally taxing the death of Bob's brother, Don, was going to be on our entire family. I tried to be a comfort and not a burden this past week and then I fell apart today. I literally could not move this morning! Not only that, I know I had to be here for the home health nurse to come draw blood and change the needle in my port. So I just crashed!!

On the night before Don's funeral, We got a call about uncle Dan. He found out he had pancreatic cancer a couple of weeks ago and the Dr was giving him 10-12 hours. So on the day of the funeral we got the call that he had passed away too! Dan was a favorite to Bob too. His funeral is on Friday. This sure pulls at your heart strings!!

Update of the day

I got some info from my Dr.'s office. He has to write and send a letter saying why I medically need this transplant. Then the transplant nurse will call with 2 days to schedule my evaluation appointment in Pitts. I so excited!!!!!!!!!!!! 

From Sue!

To get started!

I just want to give a little background on my condition. In Feb. of 07, I had 38 out of 40 feet of my small intestine removed. An adhesion from a 20 year old c-section begain to grow. It got tangled in my small intestine an choked it off. The intestine died and began to have gangrene set in. The surgeon who was one of the best in the country, was only able to save 2 feet. I am TPN dependant. TPN is feeding tube food. This will kill the liver over the years.They think it will shorten my life by about 10 years. So due to being TPN dependent, I am a canadate for a small intestine transplant.  My insurance has approved the hospital, univ. of Pitts., and now we are waiting for the financial portion to be approved (It costs a million dollars). They think I should get a call by Friday April 24th. I have no idea how long the wait is to get an apptointment with Dr. Keream in Pitts. I've had every test you can think of over the last 2 months. I even had a bone marrow biopsy this week. Don't sign up for this if your are bored and think it might be fun! This is not in the fun column. It is short-lived but on hte extremely painful side!

Small intestine transplants are not common. They have been done for a long time be only about 150 are done per year. U of Pitts only does about 1/2 of those. This is unlike say a kidney that they do about 40,000 per year. So needless to say the list is quit long. For the small intestine list is very short and you pretty much get the small intestine as soon as you get a match. You have to have a tissue type match and a blood type match. You have to have live doner just like for a heart transplant. So I basically have to wait for someone to die that is a doner and a match!!!!!!!!! Like the Dr. said I'm going ast a good time with graduations and proms and such! Transplant humor is a loittle morbid!

I've been thinking of al the things I could be missing if I leave soon. Trevor's 8th grade promo.,Brad's mission shopping stuff and his farwell, getting ready for girls camp, scout camp,summer vacation, Mother's Day, my birthday, Father's Day, 4th of July and our anniversary,etc.

I'm very excited but I'm not cool about leaving my family!!!!!!!!!!!!!!! I am going to try to get a web cam to be able to see and let my kids see me every day if they need.

I'm worried about Bob and the kids. Bob works 7 days a week so Kara and Brad will have to take over at home. Brad may have the best mission ahead of him and appreciate it more than anyone who got to go out easier than he did. He may never know how much he is appreciated here and all he does for his family!!!!!!!!!!!!!! I'd hate to think I was the reason he isn't going yet too. I know the Lord knows the big picture in this situation and He doesn't do things that are mean and discouraging. Satan knows how to do that and WELL!!!!!!!!!! There is a reason for this! I just pray Brad keeps that in mind. He is so GOOD! I admire that man! He is an awesome role model for my other kids. Heck - for anyones kids! I love him!

I hope to hear from the transport nurse Thrusday or Friday. I will let you know as soon as I find anything out!!!!!!!!!!!!!!!!! It is exciting to know that I have the possiblity of becoming more normal