Megan's staples are removed. (Sorry first photo is rotated)

We're getting rid of some lines!

These pictures are of Megan's central line: before and after removal

Day 12

Obviously I no longer know what day it is. Again, Groundhog Day syndrome! Megan has made some big improvements. She is moving around well but she tires easily. She has stayed pain free from that awful drain. They are still culturing what comes out because she is still running a temp.

In physical therapy today she practiced climbing stairs which she did very well. She is tired now from a busy morning. But things are lookin' good!

Day 10, I think!

When I got to the hospital this morning, Meg was in terrible shape. The new drain was causing great pain and hence, nausea. When Dr. Tomayo came in, she begged him to pull the drain a small way out because it felt like it was hitting something every time she breathed. He said that was not possible. But, he upped her pain meds. Shortly after that, the guy from radiology came in (he's the one who put it in). She told him of the pain and he told her to tell her doctor!

I asked our nurse to call the doctor's office to see if someone could come over. Pretty soon Dr. Tomayo came over again and gave her more pain and nausea meds. Late in the afternoon, Dr. Dunn, our hero came over to take a look. She asked Dr. Tomayo to pull it out about 2 cm. She also said that when they had cultured the pus from the abcess it was a yeast infection! She said that's pretty unusual. With Megan's body, go figure. They are treating with antibiotics. She also wanted another culture to rule out C-Dif.

Dr. Tomato came over and pulled the drain out the 2 cm. Megan got immediate relief. She said it felt like it was hitting her lung, making it difficult to breathe.

Tomorrow morning she will be able to take a shower. Yay!

We took another walk and she ate a sugar-free Popsicle. When I left she was extremely sleepy and will hopefully have a good night. Thanks for all the prayers and good thoughts. We're encouraged that we may finally be on the road to recovery.

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Day 10

Another day in Minnesota... Today I noticed that even the Mississippi has a sheen of ice. So, it's not just me! Last night Meg had a CAT scan of her abdomen looking for possible areas of concern. She's been spiking fevers and is still plagued by nausea. This morning Dr. Dunn came in to tell Meg that there appears to be an abcess up where her spleen used to be - upper left quadrant. Luckily she tested negative for C-Dif, which could be quite a set-back. This afternoon, aided by the CT scan, they placed another drain in. This time they went in through her back. By the time she got back to the room a large amount of drainage had collected. It is really hurting tonight. Likely the other drains were equally painful but at the beginning she couldn't feel any one single pain.

We talked with Dr. Dunn about the problems with the G-Tube getting clogged. She spent at least a half an hour draining "gunk" out and it hasn't been clogged all day. Awesome! This woman truly is using her God-given talent and intelligence. She is inspiring.

Before I left tonight, Meg told me that tomorrow is going to be her turning point. I hope that is true.

There are lots of nice people. I've met some students, the cashier in the cafeteria and lots of nurses and nurse's aides. Thy've shared some amazing stories about their lives.

I'm trying to counteract the effects of sitting around all day. I walk to and from the hospital and I use the stairs instead of the elevator. But darn it, I'm still not nearly as fast as those students!

Tonight we are supposed to get a foot of snow. I'm REALLY looking forward to THAT! Guess I'll be wearing boots in the morning. Sneakers are not that great in slush.... I'm really looking forward to flip flops!

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Day 9

I guess I had two day 7's. Since this experience is much like the movie "groundhog day" it's not surprising two have two day 7's! Wake up each morning, eat breakfast, bundle up, step in the same slush puddle, shiver my way across campus ( being passed by super-fast walking students), get to the hospital, walk up six floors, sit in room, etc. You get the idea. Megan is getting stronger each day. She is starting to have hands on experiences with unclogging tubes, giving herself insulin shots, generally doing self-care. She gains a little strength each day.

Meg has been spiking a fever a couple of times a day, so they are trying to rule out any infection. She is still experiencing nausea which is often connected with a clogged g-tube. Dr. Dunn is so wonderful about tweaking meds and trying new things to solve problems. She is a really good listener and then she works to solutions. We are sure that we are in the right place.

We are about a block from the mighty Mississippi. WHen the wind blows over the river it is freezing!

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Day 7

Megan is continuing to heal well. Dr. Dunn said that all her levels are great. She is gaining strength and moving around well. Our biggest challenge right now is controlling her nausea. Dr.Dunn determined that some of her discomfort comes when her g-tube is not draining properly. For some reason it gets clogged regularly and the pressure in her abdomen causes distress. Last night the nurse had a hard time clearing it. When I arrived her morning nurse had tried twice so I had a go at it. No good. Luckily for us, Dr. Dunn was on the floor doing rounds and she came right in and cleared it. She gave me some pointers, too. We went down at 2:00 for the tube feeding class. Megan only lasted about 15 minutes and then had to return to the floor because of vomiting. I finished the class and feel a lot better about having to manage it. Plus, Meg is a lot more alert and we can do it together. When I returned from class and Meg woke up, together we managed to clear the G-tube! Hurray! We've had our ups and downs but Megan is definitely on the mend.

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Day 7

It hardly seems possible that it was only a week ago that we were waiting anxiously while Megan was in her surgery. She continues to battle pain and nausea but we've found that keeping the gastric tube clear and open really helps with the nausea.

Meg is doing really well at moving around but she tires really easily. She had OT this morning and now is sleeping. This is just plain a long process. But I praise God for the doctors and nurses who are getting Megan back to her real life.

Megan's roomie is a young girl who has had a kidney transplant a while ago. Now she is back to the hospital and is facing a kidney biopsy and repeat dialysis. She is all alone and is so sad. Please lift up Karissa in your prayers.

This morning we have an appointment with the dietician at 11. She's going to talk about managing Megan's diet when we begin adding food to the tube feedings. Then at 2:00 we go to a tube feeding class. I figure Megan will be maxed out by the time we complete those two classes.

It feels quite a lot colder this morning and I'm picking up speed on my walking! Desperation will do that to you! We thank you all for your love and support.

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Day 6

Megan continues to really struggle with pain and nausea. She had an awful night and the nurses were very busy. This was the very first negative experience with a nurse. We are glad to have Lindsay again this morning. Dr. Tomayo ( and entourage) came in. Dr. Tomayo is very happy with Meg's progress overall. He is trying lower doses of nausea meds but more often. They have taken away the toradal for pain because you can only have it for five days. They have taken away the background iv pain med and she is on a 100 mg. Fentanyl patch. Now they have ordered the morphine tablets for breakthrough pain. Unfortunately they have not yet arrived. Another kind of miserable day.

The good news is that Megan was moved to a different room - away from the roommate from h$&@! Also, the nutritionist is meeting with Meg at 11 tomorrow. And at 2 pm we are to go to a class on tube feeding. The person who teaches about diabetes/insulin came by today. Meg felt so awful that she just listened. But I practiced giving shots to a sponge! Somehow, I think giving Meg a shot is going to be a lot different!

They have just brought a new roomie in. We'll keep our fingers crossed.

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Day 5

Megan continues to battle pain and nausea. It seems like the G-tube gets clogged up and this muck sits in her stomach. Once we can get it to drain it relieves some of the nausea. They now have the feeding rate where they want it to stay. The next step will be to go to subcutaneous insulin. We will need to learn how to regulate the food and insulin. This part is a little scary. But, we'll listen and learn.

Meg was able to walk today! She worked with the OT and did arm exercises. Then she went on loop down the hall.

Gradually, (really gradually) she is becoming less bloated and swollen. Once that happens she'll be a lot more comfortable.

I went to a very nice Ash Wednesday service at the chapel. We are making baby steps each day. Thanks for keeping us in your thoughts and prayers.

Day 4: afternoon

After they got Megan up and moving she began to feel better. Suffice it to say that the plumbing is working, which is a big deal. A whole bunch of stuff came out of her stomach and she really feels MUCH better. She's watching tv and eating her sugar free Popsicle. Life is good. Pease keep praying for diminished need for pain and nausea meds.

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Day 4

Today is a hard day. Megan has a lot of pain and nausea this morning. Dr. Tomayo (correct spelling) came in. He increased her nausea meds, ordered more lasix and something to bring down her heart rate. He said 4th day pain is common. They are going to do another chest xray and possibly a scan of her bladder since she's been unable to urinate.

We're hoping the meds kick in and she feels better soon. Prayers for pain and nausea and for her lungs and bladder. She feels so bad she can't get on her feet and that's bad for her lungs. They are taking her now for another chest xray.

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Day 3: afternoon

Megan is sitting up in a chair. It's good for her lungs and circulation. She's been up for over an hour. Yay, Meggie. The doc gave permission for her to sip water and have sugar-free popsicles. Of course, it will drain right down her gastric tube but it sure tastes good going down! She's getting a behind the ear patch to help with the nausea. She's also getting zofran and phenergan. She's getting some lasix (sp.?). That should help with some of the water she's retaining. After that they are going to remove the catheter. The doctor was really pleased with her progress. As I finish this, Megan has ordered a sugar-free sprite and popsicle. And, she's been sitting for 2-1/2 hours! Yippee!

Day 3: still progressing

From Megan's mom: Megan continues to do well. Her hemoglobin came up nicely after two units of blood. She is scheduled for an xray of her chest just as a precaution. We got moved to the transplant unit last night. We've had wonderful nurses all along, but these guys really know their stuff on this floor!

OT came by this morning and Megan sat and stood again. She also brushed her teeth and washed up. That pretty much zonked her out and she's resting again now. Pain and nausea continue to be a problem and her head is really fuzzy. It frustrates her. She's dizzy and seeing double.

Please continue to keep her in prayer. If you want to write a comment on her blog, I'm sure she'd like to hear from people. I'll update again this afternoon.

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Day 2: she sits, she stands, she takes a few steps!

From Megan's mom: Physical therapy came in and Megan was able to move today! It was so exciting to see her up. She experienced a little "pull" when she sat up but said that sitting and standing didn't cause any more pain. She sat for quite a while on the edge of the bed and then stood briefly. The second time she stood she took a few steps along the side of the bed. She has been awake for over an hour and is now watching t.v. for the first time (would you believe a MEDICAL show?). This is great progress!

We could still use prayer for pain and also that those islet cells really do their job. Thanks for keeping us in your thoughts and prayers!

Day 2. More progress

From Megan's mom: Dr. Tomaya (still not sure of exactly his name) came and looked at the wound. He was happy with the way it looked and said it was clear that there is no bleeding. This is great! But her hemoglobin is low because of blood lost during surgery. So she's receiving a unit of blood and they are still pushing the fluids so that her body can better repair itself. Her NG tube was taken out. It was clearing stuff from her stomach. The diabetes doctor came in and said they are giving the insulin so the islets can rest but is optimistic that Megan will be able to use less and less insulin. They want the blood sugar between 100-125. Yesterday it was all over the place but overnight they got it right at 100! Again, good news!

Physical therapy is supposed to come in this afternoon and Megan will sit up. They've also lowered the amount of the medication that she gets by pushing a button. Today she said her pain is at a 5. Up until now she's been saying her level is an 8 (out of 10). Mostly she is still sleeping. She looks pretty relaxed today.

I was blessed to find a Lutheran church right between the apartment and the hospital. It was good to be able to worship. More later, no doubt!

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A better afternoon and surprise

Fro Megan's mom:
Megan was given Toridal (sp.?) and it seemed to help a lot with the pain. They also gave her more i.v. fluids and that seemed to hop slow down her heart rate. Last night's nurses and today's nurses have been wonderful. They are skilled, very attentive and compassionate. If we can keep this streak going Megan should make a good recovery.

We learned this morning that Megan had TWO spleens! She had her spleen out a couple of years ago. When they removed the pancreas they found a small, working spleen behind it! It seems that every time Meg goes in for surgery they discover some other anomaly! How odd. As her mother I am probably responsible for this. Moms get all the blame don't they?! I never took any medications during pregnancy or labor and delivery- where are these things coming from?

This afternoon Megan was awake and alert for the first time. She is still in a lot of pain but it was good to see her back. She needed more pain meds and shortly after that she was sleeping again. The rest will help her heal, we hope.

They to take the tube out of her nose today or tomorrow and there's a good chance she'll be moved to the transplant floor tomorrow. Progress! She still has along hard job, but she's doing well at his point. Thank you for your thoughts and prayers!
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Day 1 tube feeding

A lovely nurse came in and set up the beginning of Megan's tube feeding. She will start today at 10 mg per hour and they will raise the rate by 10 mg each day. Dr Tomaso came in and he felt she was doing well. They were not seeing anything unexpected. Since her heart rate is elevated, he ordered more saline. He thinks the elevated heartrate might be caused by dehydration. They are monitoring her to see how she reacts to the food. She seems to be resting fairly well right now, though I know she is still in considerable pain.

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Day 1 morning

From Megn's mom: Lew came over to the hospital at 8 this morning when they opened. Meggie is still in considerable pain. They did the ultrasound of her liver, which involved moving her around quite a bit. Then Dr Dunn's fellow examined her so she has had a rough morning. Her nurse Rachel is working hard to get her pain under control. Physical therapy wants her up and walking but Rachel wants Megan to be in less pain before she tries that. They are still checking her blood sugar every 30 minutes and administering insulin. She is quite nauseous and they are giving her phenergan for that. She can push her pain pump every 10 minutes but is so groggy she forgets to do it. Hoping to get this pain under control soon. That is our prayer now. If I haven't called you, please don't be offended. There isn't much time or a place to have phone calls. Thanks for your prayers and thoughts. Our biggest prayer now is for some pain relief.

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Final update for 2/17

From Megan's mom: Well, now Lew and I have had our drinks and dinner. I am waiting in the family waiting room to find out where Megan will be taken next. We have no more news to report. It's not a day we would want to repeat but we are so grateful to Dr. Dunn for working long, hard hours to help our girl. We'll update tomorrow. I'm on my way to 6B, which happily is NOT the ICU!

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We're out!

From Megan's mom: the surgery is complete and Megan is in recovery for a couple of hours. We have spoken with the surgeons and they were pleased with how it went. They said they had a hard time getting the pancreas out. Apparently it had drifted up since her spleen is gone and to quote Dr. Dunn,"the tail was up in her armpit". We tried to find out about how many islets were harvested. The number was not as high as we had hoped but Dr. Dunn said that Lew and I were more concerned about that than she was. They did a biopsy of her liver just to be sure but she doesn't expect to find anything. Tomorrow they will do an ultrasound of her bile duct to be sure there isn't any obstruction from the islets. They have a pain management plan in place and will adjust accordingly. All in all, it's a good result so far. Lew and I are at Stubs and Herbs and I, the non-drinker, am having a rum and coke! I'll probably stagger back to the hospital. At this point we don't know if she'll be in icu or the transplant floor so hold off on flowers. She's going to be in a lot of pain for the next few days anyway. Thanks for your kind thoughts and prayers. We know they made a difference. Signing off to attend to my drink.

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They are closing her up!

From Megan's mom: They just called to say they had finished the infusion and will do a liver biopsy. Then they'll close her up and she will go to recovery. We expect to see Dr. Dunn once Meggie's in the recovery room. Maybe some light at the end of this particular tunnel? The next few days are going to be rough. We'll be glad when we have them under our belt!

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they are infusing the islets now

From Megan's mom: We finally broke down and asked them to call for an update. The nurse didn't have time to talk but she said that they were almost finished infusing and that Megan is doing well. That's all we know right now.

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Still waiting...

From Megan's mom:
The nurse just called from the o.r. and said that they are in a holding pattern. They have finished with reconnecting everything inside Megan but are waiting for the cells from the lab. They think the cells will be ready about 4:00 or 4:30. So we probably have another two hours, then the transplant of the cells, then closing her up and recovery room. We're anxious to know how many cells they are able to harvest. Everything is going well in the operating room. Keep praying! :)

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That awful pancreas is out!

From Megan's mom:

Dr. Dunn just sent word that the pancreas is out and everything is going well. Now the pancreas will go to the lab where they will isolate the islet cells that produce insulin. We're hoping for over 500,000. That process takes about four hours. We're partway there! (and I haven't even taken any anxiety drugs!). God is with us! Please keep praying - we're flooding heaven with those prayers!

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Sleep Tight My Honey Badger

Hi Folks - Lew reporting here.
Yes, Megan is now under the knife, and in a happy place, feeling less pain than she has in months! We started out at 5:15 this morning with a brisk walk across the U of M campus from our newly rented apt to the hospital. It was a rather warm 26 degrees. We were commenting how good Megan felt today, while just a week ago she wasn't able to even walk to the bathroom without extreme pain. Megan said it was hope. Hope for a better future that gave her strength today.
One would think that she would be freezing when Megan changed into her hospital gown. The gowns they use here are great because they have an air hose connected to them and you can control your own climate inside the gown. Of course, Megan is the only one they admitted that uses the air conditioner and not the heater inside her gown during this time of year! (February in Minneapolis?!)

As usual, she was a hard stick to start the IV, and the Anesthesia Nurse tried poking her twice before she had to switch arms and get it in. As soon as the IV started with Versed to make her loopy, the smile came over Megan's face and she started talking about how much she likes to talk, how happy she gets, and how popular she becomes when she's on Versed. Funny!
She was wheeled into OR at 7:13 this morning. But before she went in I managed to snap a few pictures. One of them, Megan w her flag draped over her, wearing her colors: Honey Badger vs Cobra: Honey Badger Don't Care!

Dr. Dunn came in to check on Megan and asked if we had any last questions. We really didn't have anything new to ask, except that we get a snapshot of the two of them before they went it to get started.

That's it for now folks. No we just have to wait for the great surgeons to do their work. We thanked all the staff ahead of time, for their day will be a long one. Arriving at 6am and probably not leaving until after 8 tonight. Talk about a tough job!
Wish us luck and we'll keep you posted!
Lew

They've started!

from Megan's mom:
The nurse just called out from the operating room and they began about 8:10. She said all is going well.

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We've begun!

First update:
We arrived at the hospital at 5:30 a.m. Megan is in good spirits. A lovely chaplain came and prayed with us. We met all of the doctors, anesthesiologists, etc. Everything has been very organized and calm. Megan was taken to the operating room at 7:13 a.m. But the actual surgery likely won't begin for an hour or more. Dr. Dunn said they would tell us when the surgery begins, when the pancreas is out, and when they have the islets. She said it would be about two more hours once the islets have been transplanted. We're on our way back to a healthy life for Megan, Lew and the kids!

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'Twas the night before panky...

Me taking a walk in my short sleeved tshirt

Well, here we are on the night before the cranky panky yanky. I am very ready for this to be over and done with. Of course, I have some mild nerves here, but I get much more spun up on Sunday nights when I know I have to go to work the next day!

I finished up my testing today. I'm in a study for a new medication that's supposed to help the islet cells produce more insulin. I had to do 2 days of testing. The first day, they hook me up to 2 IVs - 1 to draw blood from and the other to put stuff in. First they pushed in some glucose, and drew my blood about every minute. Then 20 minutes in, they gave me some insulin to see how well my body reacted to that. Then today I just had to drink a Boost shake and then they took my blood every half hour for 2 hours to test my blood sugars. This study is a double blind study, so I won't know if I'm getting the real drug or a placebo, but it's worth a try! Plus, they pay for my travel and lodging expenses for 2 days, including this trip! We used airline miles to get out here (bummer), but they'll reimburse my plane ticket home, plus the 2 nights we spent at the hotel. Not a bad deal since we were going to be here anyway!

I took some photos of our lovely apartment. It's really a dorm room, but not too bad at all. No granite countertops or travertine tile, but it'll do. It's nice to have gotten it, because it's a 2 br apartment w/ kitchen for less than half the cost of a single hotel room, so it's a pretty good deal!

Kitchen and "dining room"

Living room area

One of the bedrooms

I also took some photos of the hospital waiting room. It has 4 pods that have chairs, couches that fold out to be beds, and big screen TVs. They also have a little office area, and a nice big screen that updates each patient's status. Not that mine will change all that much...

One of the pods in the waiting room

The computers in the waiting room

Status screen

We have to be there at 5:30 am for a 7:00 (per admissions) or 7:30 (per the nurses) surgery time. The surgery usually takes 12-14 hours. Once they open me up, it takes about 4 hours to remove my pancreas. Then they will take it to the lab where they will harvest out the islets. This takes 4-6 hours. Then they will inject the islets into the portal vein of my liver.

Mom said she would update my blog, so check it for my status! Thank you everyone who has supported my family and me through all this. It has meant so much to us. And Cami and Kyle - if you're reading this - I love you SO much (Google infinity macaroni and cheese)!!! I will get better soon and then be back to see my babies! We will go on bike rides and walks and do all sorts of fun stuff. It might take a while, but I will get back to being my mean old mom self! Love, Mamacita :-)

Post TP-IAT

Pre TP-IAT

Doing it au naturale!

As usual, I lay in bed this morning, trying not to make any movements that would induce the dreaded vomitous maximus. It's usually the nausea that wakes me up, but once I lift my head to get that phenergan in me, the pain kicks in. Not usually TOO bad first thing in the morning - it just builds throughout the day. But this morning was one of the worst. It was unrelenting (one of those pains that come in waves that do not stop).  So, I lay on my bed; inhaling quietly, then softly (or maybe not!) moaned with each breath I exhaled. It really reminded me of labor pains and that staggered breathing (Hooo-hee-hee-hee-hee-hee). Recently I saw the pain scale on a Dr's office wall comparing a rating of "10" to giving birth. (Any moms with pancreatitis, join me in roaring laughter now! Believe me, it's not even close!) But then it got me thinking - maybe that IS as bad as it gets! Maybe I CAN do this. So, I'm happy to announce that instead of anesthesia and painkillers with this surgery, I'm just gonna hire a doula and pant my way through the whole thing! Maybe I can get me one of those big exercise balls to sit on too! A great idea, no?!  :-)

It hurts HOW much?!

Oh, one other funny thing about the pain clinic. They had a chart on the wall that explained the pain scale from 1-10. There was a note at the bottom that said: A 10 on the pain scale would be comparable to giving birth or the worst toothache you've ever had. I broke out laughing when I read that! Giving birth was like a 4 compared to pancreatitis! I told the Dr that was a total joke. I'd give birth a hundred times over rather than have this pain!  Of course, then there's the trouble of what to do with 100 babies, but I'm sure I could get a great price on the black market...  :-)

2/8 update

I went to the pain management doctor today. It was kind of odd, given that I'm leaving for MN next week, but at least I'm in their system when I get back. The doctor is kind of a hippie, with long-ish hair and a scarf wrapped around his head. He will help with my meds once I get home. He was funny though - they make you sign a waiver that you will submit to drug testing at any time. I guess though, it's not always for the presence of drugs, but for the absence. He's had some little old ladies come in for pain meds, but when they did a drug test, there were NO drugs in their systems. Apparently they were then selling their painkillers to supplement their incomes, lol! Anyway, he told me that he does not prescribe medical marijuana, but if I tested positive for that, he would let that slide, but anything else would get me kicked out of there. I think I'll be just fine on that one!

If anyone reading this is considering a TP-IAT and has United Healthcare, I found out some info about coverage and travel reimbursement. United Healthcare has reclassified the TP-IAT from a transplant procedure to a standard surgical procedure. The good news is that they now don't require all the testing and medical justification, so all the hospital has to do is notify UHC of the date you're having surgery. The downside is that travel costs aren't reimbursed because they only do that for "transplants". I couldn't get a straight answer from UHC, but fortunately the folks in UMN's financial department were able to give me the background.

Other than that, I'm chugging along. The nausea is unrelenting. My pain is moderately controlled. I always get worse as the day goes on, so I don't usually sleep too well. I have a heating pad on my belly 24/7. If I take it off at all, the pain gets insane. Last night, I actually had to pull out a 2nd heating pad to try to cover every inch of my abdomen, lol! T minus 9 days and counting! Of course I'm scared and anxious, but I am SO READY for this!!!

February 17!!!

Minnesota had a cancellation, so they got me in for the TP-IAT on Feb 17! I've never been so excited about a surgery in my life! You know, as we were up in MN, I had asked friends and family for their prayers for an early date. Then when they gave me April 13, I got very discouraged - so much for prayer. But everyone kept praying for me, and this cancellation came through. Nobody ever cancels this surgery, so it was amazing that something opened up!

Lew and I are flying out on Tuesday, and I have some pre-op tests on Wed and Thurs, then the big surgery on Friday. Mom is going to come out on Wed and stay the entire time. Lew will stay until the next Mon or Tues so he can get back to work and be with the kiddos. We are trying to get an apartment through the hospital housing folks, but you can't reserve them ahead of time - you just have to call once you're up there and have your social worker arrange it. Hopefully we'll get one, because they're much cheaper than the going rate around there, but if they're full I'm sure something will work out.

They tell me to plan for 10-14 days in the hospital - some of that time in ICU. Then they want me to stay for up to a month there in Minneapolis so I'm close to the doctors if anything goes wrong. I'm really trying to be optimistic, but I usually have complications with surgery. With my appendix, I caught meningitis. With my gallbladder, I had a weird connection, so he had to run a bunch of extra tests to see what was going on, and I think that surgery is what set off my pancreatis. With my splenectomy, it was supposed to be laparoscopic but he had to slice my entire abdomen open because I was bleeding so much. And then I got an infection in the hospital where I had a 106 fever and then basically died - they had to call a code blue to revive me. So, I truly hope things go smoothly but I'm preparing my mind to expect something to go wrong. Then I'll be pleased when everything goes great. I AM going to the experts now and not those honky-tonk witch doctors who did my previous surgeries! Keep up those prayers, folks! Oh, and while I'm thinking of it - the ICU does not allow any plants or flowers, so don't waste any of your money there! I would love to get emails from folks, though. Mom and Lew can read them to me when I'm conscious (which hopefully will be not at all for the first few days!), then once I'm feeling better I'll be able to respond. :-)

Happy Birthday, Mama!

Hope it's been a good one. Thank you for everything you've done for me, from birth till now. You are badass, just like the honey badger!!! :-)

Power to the purple!

There's nothing like purple hair to show your support for pancreas research! Since I won't be working for almost another year (probably), I can go a little crazy with the 'do and I'm lovin it!! ;-)

April 13

Well, MN gave me a date of April 13. 10 weeks away. It's pretty disheartening. I know, I know, it IS a date. But I've been home on disability for 10 weeks now and I just can't imagine doing it twice over. So, we're waiting to see what Tucson says they can do. They might even be able to give me a Feb date. It's just more wait and see...

I'm really struggling with what to do now. I listed out the pros and cons for each center, not that they're all weighted equally, of course.

MN Pros
- lots of experience; they've been doing this procedure since the 1970s so they know what tubes to put in to control nausea, pain, nutrition, etc and how and when to start pushing you to walk, eat, or rest
- Dr. Dunn is meticulous and has an incredible eye for detail
- world class lab where islets are harvested
- hospitalization will likely be better (they know how to take care of sick people)
- pain control; I've heard people say they had NO pain after surgery in MN. AZ tells us to expect the worst pain in my entire life for the first 2 days. (Of course there's no promise of either of those happening with me at either place)
- UMN is willing to try to fix the nerve damage along my scar from my splenectomy; UMC wants me to come back for another surgery after the TP-IAT

MN Cons
- 10 week wait time
- my support network is in AZ
- my babies are in AZ
- logistics of traveling, finding a hotel/apartment, and who will stay with me when
- travel costs
- follow-up care; yes, I would plan to go there for 3 month, 6 month, and 12 month follow-ups, but who do I see if I have complications?

AZ Pros
- Rilo and Gruessner seem very experienced. Each place claims to have more experience than the other, so I don't know, but they're clearly passionate about their work.
- Earlier surgery date?
- my support network is here
- easier follow-up care for routine and emergency issues
- no hotel or travel costs

AZ Cons
- new facility; there may be glitches they haven't worked out yet
- drs have less experience doing TP-IATs (at least in this facility)
- not willing to mess with my splenic scar
- quality of care; I have not had any good experiences at UMC. With the TP-IAT I would be on the transplant floor with nurses familiar with patients' pain after this procedure, so the care might be better, but who knows...
- responsiveness; it's hard to get anything done or even a call back, and wait times for appts can be close to a year (at least with my last GI). If I DO hae any complications, will I be able to get an appt?

So, as you can see, it's a tough call. If Dr. Sutherland was still at UMN, I think the decision would be easier. Now that he's gone, I can't say that one team has more experience than another. There's a big difference in how MN treats medical patients vs AZ, though I've not had any experience on the transplant floor. Louise from MN assured us that Tucson is a good facility and we will be well taken care of there, if that's where we choose to go. I'm so torn right now. I would REALLY love to hear your thoughts and advice on this. I know everyone will support whatever I choose to do, and I am so grateful for everything you have done already. There are no wrong answers here and I would love to hear what you would do and why. Please help me make this life-changing decision!

Wednesday update from MN

Well, we had some good evaluations today. First was my MRI. This got started late, of course, because they couldn't start a stinkin IV. After the vascular team got there and got the IV started, they started the MRI. In the middle, they gave me secretin which stimulates the pancreas and they can see how it functions on the MRI. My pancreas does not like to be stimulated, so I felt pretty yucky after that. They did have to re-record some of the sequences because you're supposed to steadily breathe through the frames, but I kept falling asleep and would actually stop breathing in the middle! It just never ends...

Then we met with Dr. Freeman, the man who first diagnosed all my pancreatic issues. He was a bit concerned that the diagnostic tests (like the EUS) didn't really show much damage, so he didn't have much clear cut evidence that the TP-IAT would help me. However, the excellent results I got from the ERCP pointed toward the pancreas definitely causing my pain. We talked about the years of experience that MN had, and how that would definitely factor into my choice of where to have the surgery.

So, now we have a major decision on our hands - where do we do the cranky panky yanky? AZ is more convenient, for sure. And they have a good lab for isolating those islets. But, MN's facility is world class - it doesn't get any better than them. MN has also done many more surgeries than AZ, so have a good grasp on how to manage pain, as well as how to help the body heal. These centers learn by trial and error, and MN is further down that path. Of course, there are added expenses with MN - even after I'm discharged from the hospital, we would need to stay in MN for a few more weeks until the drs felt comfortable with me travelling. We'll just have to see how the dates work out. Dr. Freeman said that they evaluate 3-5 cases every week, but only perform one TP-IAT per week, so I have to imagine that there's a big backlog. Louise is going to call me tomorrow to discuss next steps. It may just come down to when they can get me in. The experience and attention to detail is just phenomenal in MN, and Dr. Dunn is clearly a perfectionist and would do an impeccable job on my scar and all of the reattachments. I think the Tucson team would also do a great job and I would feel totally comfortable having it done there. But for me, it comes down to the experience and the quality of care you find in MN that is just not there in AZ. Insurance coverage can also be a deciding factor. I guess we will see - hopefully I will find out more tomorrow!