Mood:  d'oh

I was unable to update on myspace. Evidedently the wireless account that you can tap into here at the hospital considers myspace "unaccepablte"information. But I wanted to let everyone know what is going on.

Well The surgery was Jan 18th. I went back to the OR about 6ish. I couldn't believe how the docs/nurses/anesthtists joke around and make fun of each other. Of course they included me in on the fun. But It was very relaxing for me. Helped with the major jitters that I had. Despite 100 fentanyl and an unknown abount of versed I was sill awake. They put that O2 Mask on me which I'm sure had some good stuff in it. I remember fighting it as hard as i could.

Mood:  d'oh

I was unable to update on myspace. Evidedently the wireless account that you can tap into here at the hospital considers myspace "unaccepablte"information. But I wanted to let everyone know what is going on.

Well The surgery was Jan 18th. I went back to the OR about 6ish. I couldn't believe how the docs/nurses/anesthtists joke around and make fun of each other. Of course they included me in on the fun. But It was very relaxing for me. Helped with the major jitters that I had. Despite 100 fentanyl and an unknown abount of versed I was sill awake. They put that O2 Mask on me which I'm sure had some good stuff in it. I remember fighting it as hard as i could.

Short post op update

_{Thisngs hae been kinda wcky, so mom didnt get around to updating much on here. I went}

_{My mom wasn’t able to do much updating for me on here. And I don’t exactly have the energy to do it either, but I wanted everyone to know that I was doing well. It took them quite a while just to locate the pancreas, they had to take out quite a bit of ahdesions and scar tissue.They ended up getting 154,ooo isets the first time around In June of 2007 and this time around they were able to get 155,0000 again! YIPPEE!!}

_{So that was some good news. We had asked them to take a lot of pictures for us so we can see exactly what was causing me all of that pain and nausea, so Dr Sutherland I guessed “went picture happy” or at least that’s what one of his docs said.}

_{This is my third day post op and have been able to get up and wakling up and down the hall 3 times today and once was a really long one with my mom . I ended up sitting up in the chaif for 4 hoirs at one point too. I’m feeling pretty tired and am about to crash for the night, I am praying for a VERY fAST RECOVRY, and also for AJ. He came into say hello this evening. That was a really nice surprise. Dr Sutherland asked me if I would like a visit, and it was a nice one. Would have been easier, but I was in the process of getting a new room mate at that same time too. I’ve never had to have a roomie before… this should he interesting!}

 _{into the OR 530am friday and didn't get back from the reco very room until mindightish}

Tomorrow is IT!
Mood:  sad
Topic: Health

We are in Minnesota. We arrived Tuesday evening. Luckily we got here just in time before the pharmacy closed, so I was able to get the medications I need to be able to function until surgery on Friday morning.

We have to be at Fairview (university of MN) at 530am in admitting on this Friday. Bright and early, b/c my surgery is going to be 11+ hours. I really don't understand how surgeons can stand in one place for 11 hours. I think my legs would totally abandon me if I tried that!! He does get a short break for the times he comes out and talks to my mom to let her know what is going on.

During the meeting with Dr Sutherland yesterday morning, we found out exactly what he is going to do in there. They will completely take out all the pancreas, and most likely the duodenum, and chances are part of my stomach since the pancreas in adhered to it. He will also have to remove some small bowel (and hopefully no large bowel, I don't have much left, and I can not deal with another ostomy. I only had one for 2 months,but I hated it every second of the day. Yuck.

For post op pain, we are going to try doing an epidural before surgery. We didn't do that last time so I hope this will make a huge difference in that pain level during the first few hours of waking up. They will have to put on a PCA pump though, probably with dilaudid, that's the pain med that works the best on me.

I guess I've rambled on and on enough, so I'll stop here!

Sending good thoughts , hugs and prayers to everyone.

Check back when i am in surgery. My mom will probably update it everytime she hears something.

We ventured out to the Mall of America last night, I love that place. The old navy store had an extra 50% OFF of already clearanced prices. I got 3 shirts for megan for $1.49 a piece, a bookbag for $3.49 and some fancy tights for $2.99. I definatly want to go back today, this is the last day for that extra 50% off sale. You can't go wrong with $1 shirts!

Then we went into a shoe store, foot locker or something like that and they had 2 big racks of clearance and one of them had a lot of shirts on it that were $1.99 a piece. They are "big and tall" shirts, but I love to get them to lounge around in and sleep in.. that may sound weird, but it's so comfy and right now comfy is all I am concerned about!

I'm really getting nervous about the surgery. You would think that after having 9 major surgeries I would be used to this!! But instead I think I get more of a sissy each time. Go figure.

I'm missing Megan like crazy. Everytime I think of it the tears start flowing. Luckily I set up SKYPE on my laptop and the desktop "puter" at home. So I've been able to call the puter at home and see Megan and she can see me. It's really a neat program, and best of all it is free (as long as the person you are calling has skype) If you try calling a landline from skype, that is where they start charging you. There is really no reason I would need to do that. I have my cell phone with unlimited long distance.

Pre-op and Doodlebops
Mood:  happy

Tomorrow we are leaving for Minneapolis for surgery on Friday. I am having a lot of butterflies already and I am really sad that my daughter can't come with us. She will be staying home with her best friend, Papaw.

I will update more from MN before the surgery, but after that my mom will be signing in to update everyone.

Since I have to leave Megan, I made sure we had a special evening. I took her to her first concert. The Doodlebops (a show off of playhouse disney, it's a singing group kinda like the Wiggles but much better). It was so much fun. We had pretty good seats, but there were kids dancing just below the stage so I took her down there and she was dancing around and "moe" doodle looked at her and waved and said "Hi Baby!!" She was so excited. I was glad I could do something special with her before leaving for 3 weeks. She is such a mommy's girl, so I know this is going to be a hard time for her.. with my mom and I both being gone for a while. But hopefully this will be the last time, the last surgery, and the last few days of pain...  Ahh that sounds so nice.

 

Long overdue update
Mood:  celebratory

It has been a long time since I have updated, and so many things have happened.Things were going absolutely wonderful after surgery. The pain seemed to be gone, and although I still had nausea problems, life was good :) I was able to greatly reduce my pain medication use. When I first got home I was taking Dilaudid 12mg every 4 hours as needed, and methadone 70mg twice a day and 85mg at bedtime. I had it reduced to Dilaudid 4mg about once or twice a day and the methadone down to 30-40mg three times a day! All that in less than 2 months!!

Then at exactly the two month mark things began to change. It started with right shoulder pain, then left shoulder pain. Then the lower back pain returned and soon after that pain in my abdomen returned. It wasn't in the left side of my abdomen, it was more in the center, epigastric area. I had to increase my pain med usage. Things spiralled downward after that. The pain continued to get worse and worse. CT scans showed a lot of inflammation and post surgical stuff, also some more ascites. I also have an incisional hernia (again).

After a few ER visits and a few admissions to the hospital, Dr Sutherland decided it was time to have  a completion pancreatectomy, and hopefully another islet cell transplant. We were pretty sure that my insurance company would turn down covering another surgery. Especially since we had such a fight in getting them to cover the first one. And even then they only paid $100,000 of it. That left my family responsible for about $75,000. OUCH! But with a lot of help from my mom and dad and a lot of help from relatives and my church (we had a benefit dinner and a poker run) we were able to get the surgery done. Then with a lot of DIVINE intervention, Dr Sutherland requested the insurance company to cover the surgery again, and the answer came back as YES! They would cover the completion pancreatectomy and islet cell transplant. A LOT MORE THAN THE LAST SURGERY!! The financial advisor on my case at Fairview hospital (in MN) said that this is unheard of! They never cover a second surgery when they wouldn't even pay for the first one! I'm sure this is due to all of our prayers and the prayers of everyone in our community! I can not express how grateful I am for this!

So, for now the surgery is scheduled for February 11th, 2008. BUT, when I was hospitalized in November, Dr Sutherland said that he may need to do my surgery on an emergency basis. That he would push back someone else's surgery and move mine up. That sounds great for me, but I would hate for someone else to get moved back and cause them more suffering just to get my surgery sooner. So I will leave all of this in Dr. Sutherland's and God's judgement. I will pray that an opening comes up without someone else losing their surgey date b/c of me.

I do have to say that I am terrified of another surgery. I am more scared for this one that any of the last 8! (all in 3 years!). I am also scared of having to leave Megan for another 3-4 weeks. I know that she will be in very capable hands (with grandpa), and that they are definately best friends, but I will miss her greatly. I know that it was so rough on her last time, having mommy so far away for so long, and it was really hard on her to have to go with her dad while I was away. (she hates going with him even when I am home). But hopefully this surgery will "cure" me and I will be able to get back to focusing on her again. That I will be able to participate in her preschool class and start doing play dates again and shopping and going out to lunch. She loved all of that. I can't wait to be able to wake up and say, hey! let's go to a movie! or to Chuck E Cheese, or Fun Fortress or Somewhere!

I will leave this entry for now, with promises that I will keep up with this much better. Last night was a rough one, I need to try to get some rest.

Mood:  chatty

I haven't updated in a while, and I apologize for that.  Things have been a little crazy around here trying to get adjusted to being home again and learning how to get used to the diabetic thing.  My blood sugars have all been on the lower side with nothing going over 144 so hopefully my little islet cells will start doing their happy little job and shelling out the insulin! lol.  Right now I have to take 12 units of lantus every night before bed, and then if it goes over 120 during the day I have a pen with novolog that I have a sliding scale to cover it with.  That doesn't happen very often though.  I've only had to use the sliding scale like 3 times. 

As for the pain.  I still have absolutely NO pancreatic pain!! woohoo!! I do however still have some incisional and surgical pain.  I can feel some twinges and twangs of pain pulling in my muscles all over my abdomen and then the pain of the actual incision.  I'm really glad they didn't use staples this time with my incision.  This is the first time I got the disolvable stitches.  My incision looks so much better and is almost completely healed! Why would you want to use staples when you get all these better results with stitches? I guess maybe other people haven't had the same good results and that may play a factor in it.

Tomorrow is my 28th birthday and I am feeling old.  Really old.  Everyone keeps asking me what I want for my birthday and I really can't think of anything.  In my mind having the pancreas pain be gone is the best possible birthday present I could have gotten!!

The past 2 days have been what I would consider "bad" days.  I've had nausea, and threw up a few times.  I'm not sure if it is left overs from the surgery and pancreas stuff, or if maybe I caught some kind of bug on the airplane, with the recirculated air and everything.  It was a very small plane (sat only 50 people) yikes! And then I do have the CDIFF again, so that could be causing my upset stomach.  I'm really getting tired of getting CDIFF.  There were a few people on the unit that had it, so I guess someone at somepoint didn't wash their hands and gave it to me.  So I get to do the round of flagyl. Yipee.. The flagyl in itself tends to make me sick.

That's about all I can think about to update for now.  I'll try to be better about updating more often.

Ps. tony is still being his usual self.

4th Day Post Surgery
Mood:  don't ask
Topic: Health
It's mom again! Tina's in so much pain, she's wondering why she had this surgery; but when the surgery pain goes away, I'm sure she'll remember why! They removed some of her tubes today, so it's a little easier for her to move around. She sits in the chair and walks several times a day now, then she konks out for a couple of hours. Her blood sugar is fluctuating allot making it hard to control at this point. They up the insulin, and her blood sugar goes way down; they decrease it and it goes back up. It went down to 47 while she was walking today, and she got very dizzy, shaky and spaced out. She's having double vision and headaches; but we're hoping it's just the increased narcotics doing it; that happened with her previous surgeries also, but we don't remember it lasting this long. They're calling in an Opthamologist just to make sure nothing's wrong. Tina asked that I send everyone a BIG THANK YOU for all of your prayers and best wishes. She will talk to you soon; she's just not quite up to reading and answering her e-mail yet.

2nd Day Post Surgery
It's mom again! This is Tina's 2nd day after surgery, and she is trying very hard to do everything she can to get better. Her pain was a 10 all day yesterday and this morning, but I think they are finally getting caught up on it because it's now down to a 7, a number she can at least half way endure. She is very happy that the pain is at least different from the pancreatic pain that she has been suffering with for the last 3 years. She was up in the chair again for an hour today, and the Dr's are very pleased with her progress. They say that Islet Cell patients have the worst pain. Tina misses her daughter tremendously, and does try to talk to her on the phone. The Dr's and staff here at the University of Minnesota Medical Center are great, and we just can't say enough about Dr. Sutherland and Anne Marie; they are both super and sympathetic to the woes and pain of chronic pancreatitis. It's absolutely amazing to see the difference between the attitudes of the ER's in our hometowns compared to the attitudes of the Dr's & Nurses here on the Transplant floor. They actually understand what she is going through, and don't think that she's just drug seeking. Finally, someone who understands!

Tina's Surgery Over
Topic: 10-Hour Surgery Over
This is Linda, Tina's mom, from the University of Minnesota Medical Center's Fairview Hospital (Inpatient Waiting Room). I write this update after a full day of mixed emotions: from being scared, to being anxious, to being agitated, to being hopeful, to being excited, to being relieved, to being thankful to GOD, and finally to being exhausted, it's been a long day; but none of these compare to the pain and agony that our precious daughter has gone through yesterday and today. I can't wait to see her smiling face and for the chance to tell her how very much I love her. She means the world to me, my husband, brother, and most of all her beautiful daughter MEGAN! I can't say enough about Dr. Sutherland and his staff; they were all super! He was able to save a piece of that mean and nasty old Mr. Pancreas! He discovered that the body and tail of Tina's pancreas was very diseased and hard as a rock, so he removed those pieces. The head of the pancreas, however, appeared to be normal and in tact, so he made the decision to leave the head of the pancreas in, and to harvest what Islets he could out of the body and tail. This would be to Tina's advantage, and help her to be less of a diabetic, if diabetic at all. Her Amylase and Lypase levels were normal. Yeah! Then, came a second part, her colon; it had 3 abscesses, and he had to remove 5 inches of her colon. Dr. Sutherland was very pleased at the amount of Islet cells that they were able to harvest out of the body and tail of the pancreas. It was enough to inject into the portal vein, and as Dr. Dunn said, they will set up shop on top of the liver and go about their merry little ways and do their jobs. I am so relieved that Tina was able to keep part of her pancreas so that she wouldn't end up a total diabetic; Dr. said she will go home on some insulin, but eventually, hopefully will be able to get off of it altogether. Oh, by the way, her liver was fine; there was some talk in Cincinnati that it was not a healthy liver, wrong! The big issue is the pain and getting off the narcotics, it may take up to 8 months to be narcotic free. Dr. sutherland is pretty confident that Tina will keep the head of the pancreas and not have to be operated on again to remove that remaining part; less than a 15% chance that this would happen. Pretty good odds, I would say! I haven't seen Tina yet, she is still in the recovery room, but I'm sure she will be happy at the good news. Now, we just have to let her heal and begin her journey to the road to recovery and getting her life back! Thanks to all of you who prayed for Tina and kept her in your thoughts. GOD heard all of those prayers, and gave our little girl hope for a better and more healthy future!