Bye bye insulin!

Hello all! I am out in MN this week for my 6 month post-op testing. I saw the endocrinologist today and I am officially off all insulin!!! 6 months ago, I never would have guessed that this would happen when I was told that I had a low islet yield. I had a 7% chance that I would not need insulin, but I know my success is because of all the prayers I continue to receive, so thank you all who have done this for me. Dr. Bellin praised me for keeping my blood sugars so well controlled and I said, "Well, I sure didn't want to go through all that for nothing!" Giving myself insulin really was never a big deal (and certainly nothing compared to pancreas pain!), but it still makes me so happy to be insulin-free.

Nobody here can figure out what's going on with my joint pain, although everyone noticed how swollen my hands and feet are. Next step is a rheumatologist, which has proven more difficult than I anticipated. They won't see a patient without a referral, and it's tough to light fires under my Tucson doctors' butts sometimes...

Dr. Dunn was wonderful to see, of course. It's been really nice to say hi to everyone who have had such a huge impact on my life. Anyway, some of my vitamin levels came back low, so Dr. Dunn ordered some additional bloodwork today. I may need to start getting vitamin B-12 injections, which I hear really makes a difference in energy levels. She also wants me to start taking probiotics, which should help clear up the bacteria in my GI tract that is probably a big contributor to my nausea. I also asked her about the results of my latest CT which showed that my colon has migrated up into my armpit. I wondered if that could be rubbing up against raw nerves and causing some of my pain. She thinks that's possible, but a lot of it is probably from adhesions in there. She also felt a small hernia that she would like to fix when I come back for my 1 year checkup. At that point, she can also remove some of those adhesions and revise my scar, which has a lot of adhesions/scar tissue.

I'm sure there's more, but my brain is at max capacity right now. Erin and I are heading back home tomorrow. She has been so wonderful this whole trip, taking such good care of me. I am so blessed to have such wonderful family and friends taking care of me, driving me around to doctor's appointments and helping with the kids. I really can't thank you all enough, but do know that I deeply appreciate everything you do!

Update 8/15

Just wanted to give a quick update. Yesterday, Dr. Khan did an endoscopy on me to look at my stomach and see if there was anything there that might be causing all my nausea and vomiting. He saw some abnormalities and took biopsies of those (he doesn't think they're cancerous, but may help lead us to something that is causing the nausea.) He also injected Botox into my pylorus. The pylorus is the muscle at the base of the stomach that helps push food out of your stomach into your intestines. It can get swollen or inflamed and cause nausea. Well, today I woke up and didn't need to take any nausea medicine until 1:30 pm! That may sound silly, but I have had to take nausea medicine as soon as I wake up or I can't even get out of bed for the last year. So this is incredibly monumental! I just pray it continues to work! I saw my pain doctor today and he told me that he had another patient who had that done, and it got rid of her pain, too. That would be so amazing if I could get rid of the pain, too! Anyway, my next step is to go out to MN for my 6 month post-op checkup. I can't believe it's been 6 months already! I sure thought I would be much further along in my recovery by now, so it does get depressing at times. But today I'm feeling relatively ok and excited about the prospect of how the Botox might "fix" me, so that's what I'm focusing on today! :-)

I saw Dr. Khan this week as a follow-up to the persistent nausea, plus my abdominal and joint pain and edema. Dr. Khan and Dr. Dunn are really working well together to figure out what is going on with me. He had a couple of new ideas that he wanted to run past her. For the nausea, one thought is maybe stretching the pylorus (the muscle at the end of your stomach that helps move food out of your stomach and into your intestines) and injecting it with botox to relax that muscle. I guess if it gets tight or spasms, that can cause nausea. What I forgot to ask if this is a one-time thing, or a recurrent procedure. It's only endoscopic, so at least they don't need to cut anything else! He also recommended some physical therapy to break up some of my scar tissue. After surgery, your body immediately starts building scar tissue. That makes it difficult for the stomach and other organs to move food through the intestinal tract. So, he recommended a physical therapist who will work to break up that scar tissue. Hopefully, less scar tissue = more stomach/intestinal movement = less nausea.   I had my first appointment yesterday, though it was really just a consult. I'll start going twice a week next week and see if that helps.

Dr. Khan also prescribed another (yes, another) med (sucralfate) that binds to anything like acid or bacteria and can help heal any irritation in the stomach or pylorus. Once it bonds to the acid/bacteria, it then moves everything out of the stomach. I've been on it for a few days now. It seems to help a little bit. The first day I took it, I didn't have any nausea/vomiting until noon that day, which is monumental for me! It hasn't been quite that good since, but at least I'm not waking up to lean over my bed into a puke bucket at night. It's sad what standards I find acceptable anymore. It reminds me of that first apartment you have in college. A run-down 300 sq ft apartment with your mom's 20 yr old couch and a 19" tv with rabbit ears that gets 3 channels was just fine, and you were perfectly happy with it at the time. Look back now - would you ever go back and willingly live in that condition? Not me, but oh how our standards change! So, how many of you thank God every day because you didn't have to barf in a trash can that day? I actually do. Sorry - self pity moment there. It gets wearing.

Drs. Khan and Dunn are ordering more bloodwork, as well as another CT. The CT will look for anything structural, like an abscess or a partial bowel obstruction. The bloodwork will look at the standard stuff as well as a more intensive nutritional workup.   Dr. Khan also wants to investigate a possible autoimmune response that is causing the joint pain and edema.  He said he would not be too concerned if it was just swelling in my knees and ankles, but that it indicates a bigger issue when it gets into the hands and fingers. He is going to refer me to a rheumatologist just to make sure I don't have anything going on there.

I'm so glad these doctors are willing to work together to figure out why I can't stop vomiting and what the story is with all this joint pain. They seem to be on the same page, and the next steps are the right things for me. It's a nice change of pace to feel like part of a team, and to have doctors committed to patient care. As you know, I can't say enough good things about Dr. Dunn. Not only is she a fantastic surgeon, but she (and the whole MN team) keep in frequent communication AFTER the surgery as well. They're just a world class bunch of folks, and I'm continuously reminded that I made the right choice going to UMN for my surgery.

This coming week is choc-full of appointments and tests. Monday I have Physical Therapy, Tuesday is bloodwork,  a CT scan, and an appointment with a possible new primary doc. Wednesday I'm seeing my pain doc, and Thursday is more PT. I hope I can survive the week!

I also wanted to thank everyone who joined me in celebration of the 8th anniversary of my 29th birthday.  :-) I'm sorry I only made it halfway through dinner, but it meant so much to me that you guys took time out of your busy lives to spend a couple hours with me. Love you all!

Forgot to add the photo! Nice, eh?

The downside of a midnight snack...

This is how I fall asleep most nights, though usually without my hand in a sandwich (though this was neither the first nor the last time I've zonked out while eating!) Lew always has to straighten my neck out. I'm guessing this is why I wake up with a sore neck every morning!  He also took video of me sawing logs. Hey, at least I'm sleeping soundly! I haven't done that in years! Decades, even!

Overall, I'm not feeling too hot lately. Same complaints, though my nausea seems to be getting much worse for some reason. I thought things were getting better with the increased pain meds, but sadly, that only worked for a few days.  :-(  I just have to take it one day at a time and remind myself that even my bad days now are better than my good days when I had a pancreas. It's just hard to remember as I'm curled up with my heating pad or can't sit at a table with friends because I feel like passing out. We'll figure it out, I know. It's just going to take longer than I want. This sure is an exercise in patience!

I'm still here!

OK OK, I get the hint - time to update. But I still love talking to you all, so it's OK to call with reminders!

Not a whole lot going on here. I'm still having pain in my left side that nobody can figure out. My bloodwork comes back mostly normal, except for one reading that indicates a "non-specific inflammation". Which means they don't know WHAT is inflamed. I spoke with Dr. Dunn over the phone for about half an hour on Wed. (What doctor calls you at home and talks to you for 30 minutes to try to figure out what's going on? LOVE her!) After a discussion of my symptoms, she decided to put me on erythmorycin. It's an antibiotic, so it should clear up any bacteria in there, but also functions as a motility drug in case that's my problem. (Motility means how quickly food moves through my digestive system. Both infection and motility problems are common complications after this surgery.) We'll talk next week to determine how that's working out, and what to do next. She said that the 3-6 mo recovery period is the hardest, which made me feel a little better. During the surgery, they basically gut you, so there's a lot of extra room in your abdomen. Not only are your organs still healing from the trauma, but they tend to shift around with all that extra space. Makes sense now that I hear it.

I also saw the pain doctor this week, and he changed my pain meds around a bit. It seems to be helping with the pain, but I'm more nauseous now. My nausea medicine makes me really drowsy, so I'm napping a lot. It usually takes a couple days for me to adjust, so I should be better by tomorrow.

The kids are gone for the summer with their dad in Tx, so it's pretty quiet around the house. (Hi my babies - I know you read this! I love you and I miss you!) I have to take up some sort of hobby that doesn't require much focus, attention, or physical exertion. Any ideas? Reading is out because I fall asleep within a minute, and knitting or anything with needles probably isn't a good idea. I guess now those underwater basketweaving classes I took in college will come in handy! ;-)

Update for June 14

Hi, its Cami here! In case you didn't know, I'm Megan's 11 year old daughter. My mom has been a little sick lately, but still can get up and move around for a half of a hour. But, its all part of the healing process. She has some good days and some bad days, sometimes its so bad she can't even get out of bed. This morning (June 14th) carpenters and window washers came in and they have been here since 7:00 and still here at 11:00. My mom did feel well enough to get up, tour them around the house, and decide what to clean, and what not to clean. Since then she has been in bed and she now feels nauseous and sick to her stomach. Again, part of the healing process, she gets up and around, then just to walk around our house a couple times tires her. And did I mention, my aunt has pancreatitis too, and she isn't even related to my mom. She's on my dads side of the family.

While all the chaos was going on, my poor dog (Snoop) didn't know what to do. He had to stay in one place the whole time and was so sad that he couldn't just lay on his dog bed in mom's room. And that reminds me, just a couple days ago our black dog (Jaylo) died. She got out at like midnight and wandered around the streets. All of a sudden she was hit by a car, but we don't know who by. She came home and woke us up. She stayed in the vet for about a week and we got the news at breakfast on Sunday. Well, that's all for now. I'll try to have my mom update more. And, a special thanks to everyone who has helped my mom get through this surgery, especially Lew and Bama. We love you!

Memorial Weekend

We've spent this past week in San Diego. It's been wonderful. I've actually felt better this week than I have since before my surgery. The Lasix has helped to get rid of some of my edema - I don't have an ankle muffin-top when I put on my sneakers anymore! :-) Today specifically hasn't been so great, but I'm trying to start looking at things on more than a day by day basis.

The family is all out paddle boarding right now. It looked fun, but I'm learning to be more realistic. I'm not strong enough yet to do something like that. I would probably get out into the ocean and then be too tired to get back. Heck, I've got about a 1 hour limit of sitting on the beach before I need a nap! But at least I can sit on the beach now - baby steps... Anyone considering this surgery should know, obviously everyone is different and each recovery is different. For me, I'm happy to be able to sit on a beach 3 1/2 months out from surgery. However, if I hadn't had the surgery, my ashes would probably be sprinkled on the beach right now. Dr. Dunn definitely saved my life, with lots of help from my family and friends.

We found this baby pineapple at the grocery store. It did not yield very much edible fruit (about as much as could be expected from a baby pineapple), but it did contribute to much entertainment for small children. And I'm counting my blessings that I can see my kids get silly with a tiny pineapple!

Weekend update

Hi everyone! I had a good Saturday - we went down to a big BBQ that some friends had. We were gone for about 8 hours - a record excursion for me! I didn't even need to go lay down in the middle! Silly, I know, but it's a big step for me. And I took a record low in pain medicine to boot! I'm just grateful to be blogging about happy things now! :-)

I had my 3 month bloodwork taken last week - I'm hoping to have the results back on Monday. My left lung has been achy and I've had a cough for the last couple weeks, so I finally went to Urgent Care for a chest xray. (My MN drs wanted an xray because of that pleural effusion I had when I was out there. And Urgent Care is just easier than going to my primary.) The xray was clear, so that's good. Just some bronchitis, likely due to allergies since it's been so windy. But the RN was concerned about my giant ankles. She recommended that I have bloodwork done to test my kidney function. Fortunately, it was already on the list of tests from last week, so I don't have to have MORE blood drawn. I'm sure that my kidneys are fine, but I sure would like to get all of this fluid out of my joints. My knees especially are so sore. There MUST be something they can do about it. I bought myself some compression hose tonight - see if they help any. Heck, I'm willing to shuffle around in my compression hose. They'll be a good part of my ensemble as I wheel through the aisles in my Wal-Mart scooter. Oh yeah - you know you're jealous! :-)

Cankles

Just wanted to pop in to say hi. I have some good news - the feeding tube is gone! It's all up to me now! It has changed my insulin needs a bit, but nothing totally out of control. We've noticed that my blood sugar goes a bit high after meals. I hadn't needed to count carbs or give myself insulin before meals. So, I was at 18 units of long-acting insulin; now I'm at 12 units of long-acting and then use the short acting before meals. I just started today, so we'll see how that works. Of course I was hoping for no insulin or only 1 shot a day, but it's all worth it to not have that panky pain ever again!!! I need to get a new glucometer - for those thinking of the one touch ultra mini, it is not accurate. I have to test my blood 3 or 4 times in order to get an average reading. For example, last night it read 463, then 176, then 199, then 128 all in a matter of minutes. Anyway, just a warning to anyone looking for a meter.

Thursday I go to the endocrinologist for my 3 month tests. They're doing the "Boost Test" where I have to drink one of those Boost milkshakes, then they take my blood periodically over 2 hours. It measures how well my islets are working. Then they draw blood for an A1c, which measures my average blood sugar over the last 3 months.

I'm still having abdominal pain and lots of swelling in my joints. I understand the abdominal pain, but not the joints. Those seem to feel a little worse with each passing day, though I'm not sure why. (Nor are the doctors.)  I didn't ask the endocrinologist the last time I saw him, but I will on Thurs. He's a pretty sharp guy and seems willing to cooperate.

OK, that's all for now. I'll update everyone once I hear the results. Ta ta for now!

Status update May 11

Well, things are about the same here. I've been feeling lousy for the last couple weeks. I'm exhausted all the time, nausea/vomiting, and lots of abdominal pain. My joints hurt horribly. I'm a wreck, eh? My primary dr has referred me to a rheumatologist, but their soonest appointment is in july. Really, even my worst days now are better than my best days when I had a pancreas. I just need something to complain about - otherwise what would you have to read? I spend a lot of time curled up in bed with my heating pad. I know I feel better when I do get up and get some sort of exercise, but convincing myself of that is the tricky part. My definition of "exercise" is certainly held loosely though, and when I try to push it too much, I end up hugging the porcelain god. Which is basically daily.

I think we're starting to get some answers now, though.   My blood work just came back and my liver numbers are out of whack. (My Alkaline, ALT and AST are super high.) Typically, those #s mean either an infection in my liver or a blockage where they re-connected my liver to my intetine. But, my White Blood Cell count is ok, so that would rule out infection. And my bilirubin is ok, which rules out a blockage. So, they're putting me on an antibiotic hoping that will do the trick. Otherwise, I think a blockage means surgery. On top of it all, I'm terrified that my liver is going to reject my islets. My blood glucose has been on the high side (around 140 which really doesn't worry the drs). They say when you're in pain, your blood sugar goes up. So, I know WHY it's high, I just hope it doesn't damage my little islets.

So, I'm asking for everyone's prayers again. Please pray that the antibiotic does the trick and that there is no damage to my liver or my islets. Pray that this relieves the joint pain. And pray that I start to get my energy back. I know all of you have been so wonderfully supportive with your prayers, and you've gotten me through much bigger crises than this! So thank you everyone, for all your love and support. I just didn't expect to need these prayers this far out from surgery. Also, please pray for God to watch over my grandpa Jim. He is not doing well, and is now in hospice at home. I just want him to be comfortable and surrounded by our family who love him so much. For those who cannot be there in person, we are there in spirit. And Congrats to Courtney and Sam on their big college graduations! It really is a TOUGH thing to do, but you persisted and you made it! I still have nightmares of realizing too late that I was missing one class in order to graduate (usually math, which is funny...). Thanks you everyone for your prayers and support. I love you for all that you have done!

Endo appt

Just a quick update for all my fans... ;-)

I saw my endocrinologist on Tuesday. The last time I saw him, I was considering the TP-IAT. He asked how I was and I said, "Here I am, post pancreatectomy!" He said, "How much did they take?" I said, "All of it!" He said, "No, your pancreas. How much did they take?" I said, "All of it!" He said, "Wow!" Ha! He said that I looked great and that I was managing my blood sugars amazingly well. He read through all the info that I brought from MN (a letter from the MN team describing what I had, and what they recommend for follow-up). He was wonderful and willing to do whatever is needed to accommodate the MN team. It was such a huge weight off my shoulders to know that he is willing to work with my MN team. So, I go back on May 17 for my 3 month post-op tests (bloodwork and a glucose tolerance test). I can't believe it's been 3 months! In some ways, it seems like forever ago and that panky pain is fading into the distance. On the other hand, I am still facing the daily battles of recovery and it feels like I am never going to be "normal" again.

Yesterday, I was driven around by a new friend, Suzy. Lew met her through Bill and Lisa, but I had never met her before. Yet she was willing to drive me to dr appts and run my errands while I was at the dr. Then she came back a few hours later to take Kyle to karate. The generosity of people just continues to amaze me. I am so blessed.

Overall, I am doing very well. I'm still very tired, but I've been able to run some brief errands or make dinner for the family. Yesterday I made a very yummy pork tenderloin in a root beer marinade that I got out of my diabetes cookbook. The whole family devoured it! Today is tougher - I haven't been able to get out of bed all day. All my joints fill up with fluid and it's horribly painful. I think this is a common issue after surgery, yet the drs don't really know what to do about it. If anyone out there reading this has found anything that works, please let me know! I'm using Lasix as a diuretic and my regular morphine for pain. Anyone?

Fortunately, I have more good days than bad, and usually my bad days come after over-doing it on a good day. What's frustrating is that a "good" day means going to the doctor, stopping at Target for a vacuum belt, and making dinner for my family. Just that will render me bedridden the next day. It's frustrating, but I'm learning to be patient. Sadly, I'm a slow learner. We're having some friends over on Friday evening, so I'll take it easy tomorrow, so Friday should be fun! I think Lew was a little shocked that I said yes when he suggested it. We haven't had people over in a long, long time. So, I'm taking baby steps, and just have to keep reminding myself where I was 6 months ago.

OK, OK, that's all. I always think that these posts will be short and sweet, but I end up rambling on. This post has taken me all day to write. So now I am off to bed - night night!

Update from Wednesday's Dr appointments

Just wanted to give everyone a quick update on my Dr appts yesterday. Bless Lisa for driving my butt around town ALL day - on her anniversary, no less. Thank you so much Lis! It was great to catch up with you! And I wasn't even wearing my pj's this time!

First I saw the pain management Dr. He is right where all my MN drs are - we will slowly wean off the meds, but it will take quite a while (6-12 months). He gave me prescriptions for what I'm currently taking, and a goal to reduce my morphine from 5 times a day to 4 times a day. He's really comforting. I know I'm on a lot of narcotics, and I want to get off of them, but many folks don't really understand why I need them now that my pancreas (cause of all the pain) is gone. I can't say I really know. I am experiencing pain still. Not panky pain, thank God - that type is debilitating. It's probably from being completely gutted and then pieced back together. So there's surgical pain and learned pain since I had it for so long. My surgeons have all said it takes 6-12 months to wean off the painkillers. My goal is to do that much more quickly, but at least this Dr isn't calling me a druggie and just trying to yank my meds immediately. He wants to see me back in 2 weeks to assess where we're at. I'm fine with that, though it's a pain because he's 45 minutes away - uggh.

Then I saw my primary. They were basically worthless. She said that I was "too complicated" now and did not want to be part of my care team. Now, I know I'm complicated, but she's been with me since I first got sick, so she knows my history. And I understand that I am complicated. Most doctors will never care for a patient who has had the TP-IAT because there are only a few hundred in the whole US who have had this done. But my MN drs are more than willing to discuss and explain everything, and be part of my care team. But my PCP just isn't interested in that. Dr. Dunn wants some simple blood tests - CBC, electrolytes, and liver panel. My PCP won't even write the order for the blood tests. It's not like it's anything complicated. Anyway, I'm really frustrated with that, and now I have to find a new PCP who is willing to take me on. Just what I needed.

Otherwise, things are going well here. The kids have been wonderful about not coming in and waking me up, or their massive nitpicking fights where somebody has to tattle on the other. Monday I felt pretty good and thought I got a lot done, though it sure didn't look like I had done anything. (I still have 4 huge bags to unpack.) Tuesday wasn't so hot. I slept most of the day. Wednesday was very busy. Lisa picked me up at 9:30 (of course, I was running late because after walking the kids to the bus stop, I came home and fell asleep (not on purpose), so I was scrambling to get out the door.) Then we spent the day at Dr appts, with lunch at Applebee's in the middle. It has been SO LONG since I've been in a restaurant, socializing with friends. That felt really, really good! She dropped me back at home around 4 pm, and I was exhausted! I laid down to take a brief nap, and woke up at 10:30 pm. Oops! The whole family is sound asleep now. I didn't hear anything! Thank you Lewy, for taking care of everything. You are fabulous!

Next steps - I go see the endocrinologist next week. My PCP said that he will not manage my insulin because my condition is "difficult". I said that it was just monitoring my blood sugars and insulin. Isn't that what an endo does? That's like, his job, isn't it? So, we'll see. I'm praying that I don't need to find a new PCP and an endo! Hopefully, he cooperates. The MN team wants to see patients at 3, 6, and 12 months post surgery, then annually after that. They are fine with local drs just ordering the tests so I don't have to travel for those. My plan was to go out at 6 and 12 months, but do the 3 month follow-up here. Now I'm having second thoughts. I think I will book a flight to go out there for my 3 mo. I don't need to screw around with these Tucson quacks.

Finally - the enemas. I've been doing them every day. Yesterday, it seemed to flush a lot more out, so hopefully I can get things moving. As I said before, I typically wouldn't discuss this, but if it helps someone considering this surgery, then that's my whole goal. I asked myself if it really would be helpful, as I've read about a lot of complications that I have not experienced. So I didn't really need that information. But, my doctors have told me that this is very common in TP-IAT patients. So, if you get a sudden increase in pain and nausea for no real reason, it might just be that you are full of crap, lol! I messed around for 2 weeks before I knew anything, so just consider this as a possible contributor.
Also, my Dr gave me some samples of amitiza. I just started taking them, so I'll have to update with a thumbs up or thumbs down!

Day 1

Don't you just love the decorations? Cami hung 6 strips to signify the 6 years I was I'll. Gotta love my kids! :-)

So, Day 1 in Tucson, or as Kyle said, "Mom, this is the first day of our new life!" The kid is so insightful! They were both very interested in all of my diabetic supplies. I let them both take my blood glucose and also do my insulin injections. I have a practice set that is filled with water and has a sponge block to "inject". Then I let them inject me. So now they are experts. :-)

We were talking last night at the dinner table eating the wonderful meatloaf, scalloped potatoes and mixed veggies that Lew made. It has been forever since we all sat at the dinner table! Before my TP-IAT, not only could I not eat anything, but I couldn't be around the smell of food.Anyway, we were talking about my healing and things I can and cannot do. I said I could not drive them anywhere, even to school. (This makes me sad because they should at least get a ride to school when their mom is home all day!) So I mentioned that I was probably fine to drive them up to the bus stop 2 blocks away. Then Cami says, "Mom, would you be able to just walk us up to the bus stop?" I thought that was a great idea. It's not too far, but it gets me out of the house with a little exercise thrown in. As I was putting on my shoes this morning, Kyle asked if I really was going to walk them to the bus stop. I said yes and he says, "Oh my gosh mom. I'm so proud of you, you bring tears to my eyes." So cute. So I walked up with them and they were very happy.  It was already SO hot this morning (almost 90°!) so I told them that there was no way I could walk to pick them up, but I'd drive to the bus stop and pick them up if I am awake. I was not awake today. Lew takes the dogs for a walk every evening, so I'll go with him, too. At least it's a bit of exercise.

Another uncomfortable update, but if my goal is to prepare others considering the TP-IAT then I need to share everything. On Saturday, Dr. Dunn called me with the results of my CT scan. There was nothing glaring in the image - no leaks, blockages or abcesses. She said the islets were all lit up in my liver. The first step is that the islets engraft in the liver, then they next start to produce insulin. So she says I will probably start to see my insulin needs reduce. Yay! That makes me happy. The only other thing is that I had a lot of stool inside me.  Dr. Dunn put it into perspective: that's 8 feet of poop in my abdomen! Ick! She said this is VERY common with post-op patients. It's a difficult thing to manage because narcotics slow the intestines down, causing constipation or blockages in patients. That causes more pain, so you take more narcotics which slows down the intestines. So, I tried a major enema this morning. Nothing happened to write home about. It worked on less than a foot. Probably more like 6"! I'll try again tomorrow, and I also have some mag cittate I'll try - again. I sent a note to Louise with the results so hopefully she has some better ideas in store. We'll see how it goes!

Thank you!!!

I just received a beautiful bouquet of flowers from Sally, Barb, Sid and Carolyn. Thank you SO much, for the flowers and the prayers! You have been such a huge part of my recovery and I really don't know how to express my gratefulness in words. So I'll just say thank you again!

Back in the Old Pueblo

Just a quick notice to let everyone know that I'm back in Tucson. I'm very happy to see Lew and the kids, but it was hard to say goodbye to mom. I got  home to a beautifully decorated house with streamers and flags. There were 6 streamers hanging at several locations. This was Cami's idea - one streamer for every year I was sick. She's so insightful!

I'll give a better update tomorrow when I can keep my eyelids open. Until then, have a lovely week everyone! :-)

Friday update

Not a whole lot of news today. The CT report was not very descriptive, so they are sending the actual films to Dr. Dunn overnight. She will get them tomorrow (Saturday) and give me a call after that. My joints feel much better today - I can walk! And my fever is gone, so we're wondering if it wasn't some bug I got. I kind of doubt it. After I was able to restart the Lasix (diuretic), my joints have felt a little better, so I think they were just full of fluid. Though that doesn't really explain why one toe was so painful. I'm just weird. I think I should go work at a Med school as a living exhibit. "OK class, I have abdominal pain, nausea, enormous ankles and a very sore toe. So, what's wrong with me? Anyone? Anyone? Bueller?" I'm still having a lot of abdominal pain, so we need to figure out what's going on there. I've spoken with others who are still in a lot of pain at this point post-op, so it's not all that alarming except that mine got better and then worse. On Monday my pain was around a 4 (on a 1-10 scale) and now it's a 6+. If it gets much worse, I'll need to fly back to MN because I won't let any Tucson quack touch me.

The best news though is that my family is coming up to Phoenix tomorrow to pick me up! I miss them SO much! I'm still a little scared of getting back to "real" life and everything that goes with it, but I was worried about leaving the hospital, removing my g-tube, and heading out to AZ and I've gotten through that OK. I'm really going to miss having my mom around. She has taken such good care of me, and is good conversation, too. :-) I'll have plenty of support in Tucson, but it will take some time to learn all my little routines and needs. I think my biggest fear is just being responsible for someone besides myself right now. I'm very easily overwhelmed and know that something as simple as 4th grade math can send me into an anxiety attack. Logically, I know that's dumb. But I'm not so logical these days... It will all work out, just like everything else has, I know. And I just want to see Lew and the kids! I'm counting down the minutes! :-)

More fun

Well, it has been quite an eventful 24 hours. As I mentioned before, I've been feeling pretty lousy - increased pain, nausea and vomiting. I haven't been able to really eat anything, which I'm sure played a large part in my incredible fatigue and exhaustion. Just yesterday, I was brought to tears after taking a shower because I was so tired and frustrated by feeling like I'm losing ground here. Last night around dinnertime, I started to spike a fever. This was actually a relief because it points toward me having an infection somewhere rather than just being crazy. Then in the middle of the night last night, I was awakened by this horrible pain in some of my joints. The worst was in one of my toes on my left foot - truly excruciating. I know that sounds silly (it sure does to me!), but MAN it hurt. Also my right knee and my right elbow. I couldn't bear any weight at all on my foot. I ended up pushing myself around in one of my mom's chairs so I could get some ice for my foot and knee. I also emailed Louise with all this info. She called me first thing this morning to find out exactly what was going on. I had read somewhere that Creon can cause joint pain, but Louise thinks it's related more to the infection I had than the Creon. So, she faxed over some orders for blood draws and cultures STAT. Dr. Dunn also wanted a CT scan of my abdomen, so Louise had to try to coordinate something with a local hospital for me. They were willing to do the CT, but needed an order from an AZ doctor. So Louise is trying to contact my GI in Tucson to see if he would be willing to sign an order, but she couldn't get
anybody there to return her phone calls, so eventually she got in touch with my primary care doc. Then the hospital had to get prior auth from my insurance co. It was just a big mess and so many people from so many places just bent over backwards to fit me in for this test.

I don't know any of the test results yet. Louise emailed me earlier and said that my blood work looked "not too bad" whatever that means. She is going to call me as soon as the CT results come in. My guess is that it will be tomorrow. So, please pray that they find something, but that it is minor. I really hope that there's something that we can point to as the cause of why I've been feeling so lousy, but nothing that requires any surgical intervention. I'll let everyone know as soon as I hear something.

Megan

Warning: Long, rambling post ahead...

Hello everyone! Just checking in to say hi. Things are mostly the same around here. I haven't been feeling too hot for the last few days. I've had a lot of abdominal pain. Not panky pain, thank the Lord! It's internal - I'm guessing it's the new connections that are getting some activity since I've started eating again. I'm having a hard time getting the pain under control even with the arsenal of medicines I have. It gets a little draining. In addition, I'm retaining water like crazy. I have giant cankles - everything is swollen. So, Louise (Dr. Dunn's nurse coordinator) called in some Lasix for me, which is a diuretic. I've tried the OTC stuff and it wasn't working, so I'm glad Louise was able to call something in. She's also ordered some blood work (last week and again this coming Thurs). There wasn't anything alarming in last week's labs, but they're just trying to figure all this out long distance. I have faith that they will, though. I have complete trust in that team, no matter how far apart we are.

Since I haven't been feeling great, I decided to stay another week up at mom's house. I waffled back and forth (I miss my family SO much), but finally determined that having a setback because I'm doing too much isn't worth the risk.

I know I have come so far since my surgery, and I'm incredibly grateful for all the support I have received from friends and family. I try to emphasize those things when I post. There's nothing to gain by whining about the tough times. However, my hope and true intent is that this blog can help others who are contemplating the TP-IAT. I pored over other blogs to learn about what to expect and hear the realities of life after the procedure rather than some article written by doctors. So for that, I want others to know that this is one of the hardest things I've had to do. Despite all the reading and preparation I did before surgery, I was not at all ready for how incredibly difficult this recovery was going to be. When I post that I had an Arby's roast beef sandwich, I leave out that I could only eat a few bites and was very nauseous afterward. When I say I walked to this point or that, I don't mention how sore and exhausted I am afterwards. Because I really am blessed with all the things that I CAN do now, so why focus on what I can't? As far as the TP-IAT, I would do the surgery over again in a minute. It has made such a huge improvement in my life. But I still hurt. A lot. My pancreas was the source of all my pain before, so what hurts now that it's gone? I don't know. I've had other surgeries and have healed much faster from those. But still, I have to take a lot of narcotics. Even more than I was on before my surgery. I really don't know why I need them, but I do. The doctors all tell me that this is completely normal, and are actually surprised at how quickly I have ramped down on those meds by myself. I am way ahead of their expectations, but they say it will take up to a year to wean off the meds, if I'm able to do it at all. Some people continue on them forever. I guess it depends on how much and how long you were on narcotics before the surgery. Apparently, in some cases, the body will continue to feel pain even after the source is gone. That's not me. I will be off these meds before the end of 2012, hopefully sooner. But right now, I'm not safe to drive. I don't think I can react quickly enough if I needed to. But for how much longer - I don't know. It's an imposition on others who have to drive me to appointments. It would be nice if I could drive my kids to all their activities, especially since I'll be home and not working. It only makes sense. But if I hurt them or anyone else, I would never forgive myself. So it's this constant inner battle of needing to recover vs what my family needs and me being able to contribute and not just be a drain on them.

My point to this whole long ramble is that there's more to illness than meets the eye. When you see me out and about and looking great, it's OK to tell me so! :-)  But please know that I may or may not be feeling great right at that moment (I won't tell you, either), but this isn't how I look 24/7. I've read that those with chronic illnesses can often feel defensive when others comment on how they "look." They don't want to be pitied, so will try to look as "normal" as possible. But if they're seen doing something normal, others expect that they can/should be that way all the time. I want to be realistic here - I'm eternally grateful for all the support I've gotten, and the wonderful doctors who have cared for me. My life has completely changed from having this surgery - 99.9% for the better. It has given me the freedom to eat basically whatever I want to. (Even with diabetes, I really have NO food restrictions at all.) I know when I wake up how I will feel that day - no more surprises. I'm even looking forward to the things I'll be able to do with my kids now; that they'll no longer remember me as the mom who laid in bed all the time. I'm so excited about the new lease on life that I'm getting. But I don't want to come across as perfect and Pollyanna. Recovery is hard - physically and emotionally. I still get defensive when people say benign things because I've been called a hypochondriac, a drama queen, a drug seeker. Yes, I'm probably partly 2 out of the 3 ;-) but I'll get there. Not tomorrow, but I will get there.

The important stuff

I thought I'd share a funny story. Kind of crude, but funny nonetheless. On Sunday Erin, Kevin and their associated families came over to mom's house for Easter. Erin's kids were very interested in all my medical contraptions, so I was explaining about my glucometer and feeding tube, etc. Now, this formula I'm on gives me a lot of gas. I mean, a LOT. So mom tells Caden (my 5 yo nephew), "But Caden, you should hear her toot. She can toot so long that you could sing the alphabet and she'd still be tooting," (This is sad, but true.) Anyway, as the day goes on, I let him help me do some things. He helped me load the test strip when I had to take my blood sugar. When I had to give myself medicine through my j-tube, I let him push in the syringe through the port. Mom says to him, "That's pretty cool stuff, isn't it, Caden." He leans over and whispers to her, "Yeah, but when is she gonna fart?" Out of the mouths of babes! Of course, since I was on the spot all day, I was unable to produce. This greatly saddened Caden, but relieved the rest of the family! Too bad...I finally had the chance to get back at my brothers and I blew it....or, I guess, I DIDN'T blow it...

Otherwise, things are still going along well here. I've had quite a bit of abdominal pain the last couple of days. I think it's probably because I'm starting to eat so different parts of my intestines are being used. I've been doing a lot of resting, but we've vowed that we'll get up and out to do at least one thing every day. That way I'm sure to get out of the house and not just holing myself up in the bedroom. This is just one of the wonderful things my mom has done for me. She knows just when to push me, and when I need to rest. I really never could have done this without her and I appreciate everything she has sacrificed to help me heal at this slow pace. So, I could never say it enough, but thank you, mama. Thank you so much! I love you and like you! :-)

Alive and well in Phoenix

Well, we've made it to Phoenix in one piece. It was the trip from hell, but I'm still way too tired to explain it all now!

I do have a couple of good stories. The first one we call "The Great Twizzlers Escapade". When I was still in the hospital, my mom had gone down to the gift shop to find me some hard candies. She also found a bag of "no sugar added" Twizzlers. We figured they were fine because the package showed there was no sugar. So, I ate a few of them. A bunch of doctors then came into my room for rounds. When they saw the giant red globs coming out my g-tube, they were concerned that my stomach was bleeding. I said, "Oh no, that's just Twizzlers!" They all looked at me laughing and said, "No, you can't have Twizzlers. Let's lay off them for now!" One of them showed me that it had "sugar alcohol" which is one way they can sell things labeled "no sugar added." Oops! Now fast forward a few weeks. I was out of the hospital and had no g-tube. Mom and I went to the movies, so I HAD to get some Twizzlers! I sent this photo to Dr. Dunn who thought it was very funny. But the best was that doctors and nurses were coming up to me later, laughing about my Twizzlers escapade. I guess word traveled fast, because I didn't send it to anyone but Dr. Dunn, ha!

The second is a photo of me eating an Arby's roast beef sandwich. The significance in this is that I haven't been able to eat beef in about 6 years. My pancreas did not like it, so it caused horrible pain and vomiting anytime I ate it. I'm holding out hope now that I will be able to eat like any other normal person. Sure would be nice!

So, I'm here in Phoenix at mom's house for the week, then Lew and the kids will come get me next Sunday. I miss them SO much! I still have good days and bad days, but overall I'm getting better all the time. If we do anything during the day, I definitely need an afternoon nap! This recovery has been much harder and taken much longer than I had prepared myself for. Everyone told me, but I thought that I usually recover pretty fast, and I wasn't as bad as some other folks who had the TP-IAT. It gets frustrating at times (ok, a lot of the time), but I know I'm already WAY better than I was before the procedure. And my islets are starting to kick in! Dr. Bellin reduced my lantus (long acting insulin that I take every 24 hours) again, and changed how much novalog (short acting insulin) to give. It was to give myself novalog if I went over 120, but now it's only after I get to 140. And, I haven't had to take any insulin at all when I eat! This is exactly where I want to be. I'm ok with a daily shot, but having to figure out how many carbs are in each meal and convert it to how much insulin I need and then give myself insulin before I eat - I just didn't want to deal with all that. I know I signed up for it, but was hoping for the best. So thank you everyone, for all your thoughts and prayers. Please keep them up! I know that this is what has gotten me this far!

It's official! Goodbye drain, hello plane!

I had my final appointment with Dr. Borja, who covers when Dr. Dunn is out. At first, he was going to make me come back on Thursday to remove the drain, but I kept good records and begged him to do it today. So, one tube down, only 1 more left (my feeding tube). They took my weight today and I had gained 5 lbs since last week. It makes no sense because I've only eaten a couple of things (oatmeal and chicken) and have been very active, so I asked if they would reduce the amount of my tube feeds. I also asked them to reduce my insulin because I've had several low blood sugar readings. So, they cut both in half and expect to reduce my insulin even more. They think my eyelets are beginning to kick in - yippeee!  The nurse thinks my weight gain has to be water weight, because of how quickly it came on. I don't care WHAT it is, I just want it off!

So, we are flying back to Phoenix on Friday, YAY!!! I am going to fly with mom; there's no way I could fly alone right now. I will stay with her for a week, then Lew and the kids will come get me the next weekend. I am SO looking forward to my nice, cozy bed. Yeah, I'll be happy to see Lew and the kids, but my bed is what I REALLY miss! (Shhh...don't tell them!)

We went to the Mall of America yesterday - it never sinks in just how big it really is! It's .57 miles around, which actually sounds low to me. And it's not your simple "drive to the mall," We had to walk to the bus station, take the bus to the train, and then take the train to the mall. This whole process takes a little over an hour. So, it was an exhausting trip, but it was a lot of fun and I'm glad we went. Love you, mom!

That's about it. We're now in the packing frenzy too see what to pack. Almost all of my meds are liquid, and I have a lot of them. I have like 6-7 bottles of some of them, and they're big bottles. I called Southwest and they told me that I need to carry on everything with me. I guess the cargo has no pressurization, and they said that they lose boxes all the time. Great. But I also have a bunch of supplies (wound dressings, tape, etc) that I am going to pack, since it won't be the end of the world if they lose the boxes. Just lots of stuff to do - better get at it!

Another nice day at UMN

Yesterday started slowly - we were waiting to hear back from the doctor to see if I could get my drain tube removed. Also, I found a small leak in my j-tube (see my previous post), and it's really sore and looked like it might be infected. You'd think that would be enough for one day, but no. Then I started wheezing again and you could hear my lung crackle. Really? Yes, really. The upside is that the doctor now has time to see me. So we trucked on down to the hospital for a chest xray and then to see the doctor. Dr. Dunn was in surgery, so I saw her backup. It was kind of funny when I got my xray. Bill the xray guy and I have gotten to be quite good friends. The xray shows up on a screen in the same room, so you can instantly see the image. Bill says, "Is it your left lung that they're looking at?" Yes, sadly. I pointed to the fluid at the bottom of my lung and said, "That's the bad gunk in my lung, right?" He says, "Yes. I mean, it needs to be read by a radiologist." Yeah, that's what I thought.

So, the Dr came in and told me that we need to leave the drain tube in just a little bit longer. When they cultured it, it still came back that there was lipase in it. This is not a good thing - lipase is one of the pancreatic enzymes that digests your food. If it goes anywhere else in your body though, it will just digest that. And I'd really prefer to not digest those organs that I have left! So he wants me to come back on Tuesday and I can probably get it out then. For the j-tube, he said that these things leak all the time and mine was so small that it wasn't worth it to change. That process is pretty intense, so I've heard. He also didn't think that anything was infected. I had some celluloids (I think that's what he said) that he burned off with silver nitrate. He said it wouldn't hurt, which it didn't until he stuck the swab down into the hole where my tube comes out. I begged him to stop and give me a little break. I had to catch my breath, it hurt so bad. But, he said that should help with the redness and it won't be as sore. Only time will tell - it's still red (and black) and sore. Then, he looked at my xrays and said that there was a bit of fluid in my lung, but it's just the remnants from the pleural effusion. It's better than the last xray, so he said I'm good to go. Yay!

Then we decided to go over to the student union to find lotto tickets to the Mega Millions lottery, which was at $640M. They had nothing, so we started walking back to the apartment. We stopped at Applebee's to get some takeout. I got some mashed potatoes and some chicken wonton things to try to eat at home. Then we found a liquor store that sold lottery tickets (not the first time a liquor store has come to my aid!)
Then we went home and I was going to try eating. But I have absolutely no appetite at all, plus I'm nauseous all the time, so they are waiting patiently in the fridge. I'm just not sure what to do here - I know I have to eat before they can take out my j-tube, but food is so unappetizing right now. I try to force something in there, but I get so nauseous. I don't know - maybe they could lower the rate of my tube feeds or something. Hopefully someone can think of something!

Other than that, I'm doing great. Getting better every day. I know I still have a long way to go, but I'm up for the challenge! Oh, and we didn't win the lotto. At least, that's what we're telling our friends and family... :-)

A beautiful day in Minneapolis

I had an appt at the clinic yesterday for some blood work and a culture of the fluid from that abscess drain. Assuming that there are no surprises, I get to have the drain pulled today (Friday)! I am so excited about this! I want this tube OUT!

After that, we walked over to the student union in search of something worthy enough to be my first bite of food. It was such a beautiful day - great to be alive! (Sadly, today is cold and dreary...) Anyway, the student union is huge! There are so many stores in there, it was like a mall. The first store we encountered was the bookstore. This thing was massive and oh so wonderful. Seriously, this bookstore was about the size of a Target. There was a "gift shop" up front with all of the UMN garb - sweatshirts, hats, mugs, etc. Then you go into the main bookstore that has another section of greeting cards, stationery, and other knickknacks, an electronics section, and 2 big book sections - one for regular books and one for textbooks. I think we spent over an hour in there and only looked at about half the store.

Then off in our search for food. We made it to the convenience store, which didn't have much of anything, though I did get some mac n cheese. (One of my cravings, in addition to mashed potatoes.) We decided to walk back home, with a stop at Jamba Juice on the way. Before surgery, I practically lived on Jamba - yum! Not. It tasted horrible to me. Mom said that she thought it tasted good. I think my taste buds need to get used to food now. A few days ago I ate a small bite of Hershey's chocolate and it really did nothing for me. Woe! Once we got home I made the mac n cheese. I scooped out 1/4th of the little tray to start. The taste wasn't anything to write home about, but it wasn't horrid either. I had a little bit of nausea, but didn't need to give myself insulin, so that was very exciting to me!

Now I'm just waiting for Louise to call me back with a time to get this drain out. She better not make me wait through the weekend! And, of course, I have another issue du jour. My j-tube has a small leak in it. I put some blue medicine into that tube, and a couple blue drops oozed out of the incision site. Now, there's about 12 inches of tube between the port I put meds in and where it goes into my belly so it's not like I dripped on it accidently or anything. I've found that if I add my meds very very slowly, it will not leak. So I have a temporary fix, but I don't know what they'll do for long term. The hole is definitely inside me, not in the exposed portion. Man, I hope they don't have to replace it! Maybe they can pull it out just a little and we can duct tape it or something. Stay tuned...

Oh, and I have no idea why I'm leaning way over to the left in that photo! And no, I'm not bald either. Guess it's time to start back up with the hair and makeup regimen. Sigh... At least I managed to put on a bra this time! And shoes! Don't pressure me, it stresses my islets.... :-)

Great appointment with Dr. Dunn!

I had an appt with Dr. Dunn this afternoon. Have I mentioned before that I love her? :-) We went over all the standard stuff first. She thinks I'm doing great after that last bout in the hospital. She looked at my abscess drain - it isn't putting out much anymore, but she wants to keep it in for just a few more days to make sure everything in that abscess is completely gone. So, I'm coming back on Thursday for a culture of that fluid and then, based on the results, will have it removed on Friday. I so hope that happens - even though this tube and bag are the smallest of the three I have, they're the most bothersome. It's in my back, so it's uncomfortable to lay on my back, and the bag just hangs there so it gets caught on everything. It will be nice to lose that one.

Then we went to my g-tube. I have had it clamped for 4 1/2 days, so she decided to just remove it right then and there. She had me lie on the table and deflated the little balloon that was holding it inside my stomach, and then pulled the tube right out. Lesson learned: make sure to drain whatever's in your stomach first! Once she pulled that tube out, a geyser of whatever was in my stomach shot straight up out of that hole and drenched all of us. It totally surprised everyone, it was so funny! It kept doing it, too, every time I shifted position. It's a good thing that it was only water in there! I'm thinking that I could join the circus and go on a traveling roadshow. Come see the human geyser with the railroad tracks down the middle of her stomach! Ha! Anyway, it's kind of bittersweet - it was my little safety net in case I got too nauseous, but it's nice to have one less tube hanging off of me.

So lastly, my j-tube or feeding tube. I will likely have this for quite a while still (meaning several more weeks). But now that my g-tube is gone, I'm allowed to eat whatever I want now! I have to start slowly, eating soft, bland foods like yogurt, pudding or mashed potatoes. This is where I will start counting carbs and learn how to adjust my insulin. It's a little bit daunting for me. I've never had to do anything like this, so I'll have to learn. I know I can, and will pick it up quickly, but it's a bit overwhelming right now. Please keep me in your prayers that it all goes smoothly, and also that my islets start to kick in. I've been feeling pretty down that I'm still on so much insulin. I know it can take a while for the islets to start working, but I'm seeing no signs at all. And yes, I know that this is what I signed up for, and I'll take diabetes over pancreatitis any day, but I'm hoping that I'll be one of the lucky ones. Anyway, the GREAT news is that if I'm able to manage my blood sugars now as I start to eat, they *might* let me come home late next week! Woo hoo! As I said, I know I'll be able to figure all this stuff out - I just need my body to cooperate as well! But very exciting news - yay! :-D

One last thing - I wanted to say thanks to Sally for the wonderful pictures. Once again, you made my day! You have such a great sense of humor, and those other photos were just beautiful. The meditating dog was definitely the best one, though! :-) Thank you for all your prayers and support!

Greetings on a frozen Monday

Hello all,

Feeling much better here. I really think I'm over the hump and it will be downhill from here. (Yes, I am knocking on wood as we speak!) My next challenge will be in the brain department - I had an appointment for some blood draws at the hospital this morning and it wasn't until we sat down in the shuttle that I realized that, once again, I forgot to change out of my slippers. Oops! :-) Of course, I had to take a photo! Nobody at the hospital seemed to mind...

Well, I've had my g-tube closed since 6 am Friday! Now that's without any food, but it's a huge milestone for me! I was super nauseated this morning, so finally broke down to drain it, but only a few drops came out. At least now I know that it's not from anything in my stomach. I think I'm finding that I get nauseous when my blood sugar is high. It's just gonna take some time for me to learn what this new body is telling me!

I'm getting better with my activity level, too. Yesterday I walked on the treadmill for 30 minutes! And today, we walked home from the hospital (~4 blocks) at a very rapid pace. There's a hospital shuttle that drives to several locations in a big loop. Our apartment is the stop right before the hospital, so it's only a couple minute ride when going TO the hospital. But when you want to go home, you have to ride the whole 30 minute loop to get back to the apartment, so it's faster to walk home if you're able. Plus, they jerk that bus around like there's no tomorrow, so I'm always ready to vomit once I finally get on firm ground. So today, we decided to walk home. But ooooh, once we got out there, it was cooooold! And windy! We just had our thin sweatshirts with us, and it was 31° outside. We practically sprinted home. It was definitely the fastest I've walked in quite a while. In slippers, no less!

Well, that's about it. I have an appt with Dr. Dunn tomorrow (Tuesday) afternoon, so I should know a lot more then. About my health, anyway...

I'm home!!!

Or, back to the apartment, at least. They did another thoracentesis Friday morning and got about 500mL fluid this time. They only got 375mL the first time, so it's not surprising that I still couldn't breathe after the first one. Anyway, I felt worse immediately after the procedure, but am starting to feel better now. Still need to work on expanding the collapsed portion, but I'll get there!

Now for some exciting news! On Thursday, Dr. Dunn wanted me to start clamping my g-tube for longer and longer until I can go 2 whole days with it clamped. Well, I'm proud to announce that I was able to go from 4 pm - midnight (8 hours) on Thursday! (The longest I've gone before this was 1 hour.) I was very proud of myself.  Then, I clamped it again at 6 am Friday and I made it a full 24 hours clamped! Probably silly to be so excited, but it's all about the little victories here. :-)  So, if I can stay clamped all day today (Sat), I think I can eat some clear liquids. I'll do that for a couple days so by my next appointment with Dr. Dunn on Tues, she'll let me go to full liquids. Not sure how long that phase will last, but it gets me that much closer to coming (to my REAL) home!!!

More action today

Still in the hospital, feeling about the same. It still really hurts to inhale, but none of my doctors are surprised since my left lung has a lot of fluid either around it or in it. Dr. Dunn said I could try another thoracentesis (drain my lung), but didn't have to. I've chosen to have it done. It wasn't traumatic the first time, so I'm fine doing it again, especially if I can get more relief. They're also going to look at my j-tube, which has been giving us trouble now. They took an xray that showed 2 very sharp turns right after it goes in to my intestine. So I guess they're going to try to run a guidewire through it to see if that will straighten out the j-tube. If not, they will replace it. Both the thoracentesis and the j-tube study will happen sometime today - just not sure when.

Another thing - I was kinda craving some cream of wheat earlier, so I was going to give it a try. My hospital diet is restricted to "clear liquids only" so I need it advanced in the system by a doctor to a full liquid diet. (Cream of wheat is considered a liquid.) But, Dr. Dunn wants me to be able to clamp my g-tube for 2 DAYS before I can try eating anything. I've tried clamping before, but can only make it about an hour before I get too nauseous and have to open and drain it. And she wants me NPO (nothing by mouth) for those 2 days. This is going to be SO hard! Right now, I'm drinking tons of water (like 4 liters) every day. It just goes out the tube anyway, but my mouth is so dry all the time that the icy cold, crisp, clear, wonderful water just feels like heaven in my mouth! :-) And once I do that, she wants to just remove the whole g-tube. This really scares the crap out of me! I was actually in tears after she left my room. Yes, that's stupid, I know. It's just a lot of stuff to deal with, I guess. It's my safety net, my comfort blanket, and I'm so scared that I'll go back to the horrible daily nausea that I'm used to and there will be no way to "fix" it.

Lastly, it sounds like I will be able to get out of here tomorrow. I need those 2 procedures done today, then see how I do overnight. As long as everything improves (or at least stays the same), I can go home - yay! Then they will draw blood for more labs on Monday and I will see Dr. Dunn in clinic on Tues. That's when she will tell us how much longer we will need to be out here. My guess is 2 more weeks. If I can keep my g-tube clamped over the weekend, then she can remove it next week. Then we can work on my blood sugars and make sure my insulin is stable. Cross your fingers!

Wednesday update

Still here. Not a whole lot has changed. I think overall I'm feeling a bit better, though it's still very painful to breathe deeply. Dr. Dunn came in and asked me how I felt. I told her and she said, "Oh. Because your rays today look much worse." Fantastic. She pulled up the xrays and showed me how everything looked. In her opinion, the fluid at the bottom of my lungs wasn't visible because the effusion covered it up. Now that the effusion has been drained, she can see the fluid in my lung. So, she wants me to continue with the spirometer (this tube thing I breathe into that measures how much air I'm moving), and also try to keep coughing up whatever's in my lungs. She also referred me to a respiratory doctor to see if they had any more ideas on how to get the gunk out of my lungs. So then the respiratory Dr came over to see me. He said that he read the report on when they drained my lung, and was surprised that they only drained 375 mL of fluid because I clearly had 1.5-2 L of fluid in that lung. (Dr. Dunn had said this before as well.) So he thinks that there is still a significant amount of fluid in that sac around my lung
and doesn't understand why they only drained 375 mL of fluid out of that lung. That actually makes more sense to me, because I haven't been able to cough up anything at all.

So, where does that leave me? I have no idea. Before the xray this morning, the drs were talking about discharging me tomorrow (Thurs),  but I don't know if they can let me go with all this pleural effusion. My guess is that the respiratory team will recommend another drain so they can get ALL the fluid AROUND my lung. I know Dr. Dunn  will want it clear before discharging me, or at least significant forward progress.

At my breaking point

It's just one thing after another after another. The xray this morning showed that the fluid was still there, and my lung had probably collapsed just a little bit more. So, they decided to drain it. They come to pick me up for "Interventional Radiology" and I turned to mom, "Oh, so it's an intervention now, eh? How could you do this to me?" She said, "Don't worry, your brothers and sister and Lew are down there waiting for you." Ha! The transport guy wasn't quite sure what to do with us! :-)

The drainage wasn't too bad. They had a hard time finding a place to go in to  drain because of the amount of fluid. But, they did manage to drain it successfully. That really helped me to start breathing again, but I'm still in quite a lot of pain when I inhale deeply. But it is much, much better. They also took a fluid sample to send to pathology to make sure there's no infection.

When I got back to the room, I was just hanging out in bed watching TV and felt something wet. My g-tube pops open quite often, so I figured that was it. Nope. The stitch in my j-tube had ripped off and the tube was pushing itself out of me. So if you put food in my g-tube, it just leaks out from the hole in the middle of my abdomen. Mom made some crack but I was like, "No. No cracks. Not funny." as I was on the verge of tears. Bethany (the resident) tried her best to get it back in there, but couldn't. So it was BACK to xray so we could see where the tube was. Once Bethany saw the xray, she was able to push my tube back in easily. Now I'm just waiting for them to stitch it to me (not urgent).

Now I'm getting more and more pain with breathing again. My chest just feels like it's being stabbed over and over again. Hopefully, the pain is my lung re-inflating itself. It sure hurts enough.

And that was all before noon. I'm going to take a nap. Will update later once I talk to Dr. Dunn.

Dr. Dunn is back :-)

I always feel so much better when I see her. She was just down in Brazil at some brainiac convention so I have missed her!

She used lots of medical sounding smart person words, but basically she thinks that I'm having a reaction to my tube food. It is too hard for my body to digest, so it creates fluid called chyle (not Kyle! But pronounced the same way!) ;-) All that extra fluid in my abdomen then accumulates around my lungs. She said that I have 2 liters of extra fluid in my left lung! No wonder I can't breathe!!! The path forward is that first, they will take a sample of the fluid from the drain in my back to confirm that the fluid is indeed chyle. That would be good, because it means no infection. From there, they will go in with the dreaded drain, but will not leave it in - just a one time shot. (Except I bet it's gonna take forever because they use a tiny little tube for the lung drain, and have to use that to drain out the entire 2 liters of fluid. Yup, gonna be a loooong day on that one!)  They would also switch out my current drain for a smaller tube since the big one has been irritating me. They're also going to gradually switch me to a different formula that is already pre-digested (yes, I have gotten THAT lazy!)  Hopefully that will help my symptoms so I can breathe again AND identify the cause by switching formula.

So, that's where I stand right now. They already sent the fluid sample to the lab and don't expect to get the results until tomorrow. (I think they try to grow a culture as part of it.) So maybe tomorrow they will try the drain. I'm not sure how quickly after that happens that you're allowed to go home. We shall see...  At least Dr. Dunn is back, and Bridget and Brooke are my nurses here. They are the bestest nurses in the whole wide world! :-)

***UPDATE***
One of the drs just came in and gave us an update. The fluid in my drain is indeed chyle. So, they are going to start me on a new (nonfat!) formula overnight. The old formula was 50 ccs/hr; the new formula is given at 75 ccs/hr. They have very different nutritional properties, so they have to put me on an insulin drip until the transition is made. They will do all this overnight, with finger sticks to test my blood glucose every hour, ugh. Then I am having a thoracentesis (lung drain) tomorrow at some point. The Dr said that if everything is ideal and goes perfectly, I *might* get to leave on Wednesday, ugh. Both mom and I felt like she was kind of holding something back, and that she doesn't think it will really be Wed. I said we'll take it one day at a time and deal with anything that comes up as it comes up, otherwise it will drive us crazy!

I needed a new IV for all this, so they called the vascular team to come over with the ultrasound machine. Well, the first lady looked for quite a while, but couldn't find any veins. With an ultrasound machine! So she had to call someone else to come up and he spent over 1/2 hr to find any veins. I guess they are just done! I'm certainly sick of all of this too!!!

Still trucking along

Still here, doing about the same. I had a chest xray this morning. To my lay eye, it looked maybe a little bit better, but still significantly full of fluid. I haven't seen any doctors about this today, but one of them ordered more diuretics. MAN...there will be NO fluids left in you after that stuff! My guess is that I was right (go figure!) that there has been some progress, so they will continue to wait and see. The resident seemed pretty reluctant to put in a drain, which made me happy. He sounded almost resigned to it yesterday, but hopeful that I can heal myself. Anytime a cut is made, it introduces bacteria into my body, so I want to avoid that if at all possible! I think they're going to continue along for another day, and take another xray in the morning. I'm OK with that, as long as there is forward motion. Overall, I'm feeling a little better - they were able to reduce the amount of oxygen I need to be given.

I would like to thank everyone over at Desert Cross Lutheran Church for all your thoughts and prayers. It is so wonderful to know that there are so many folks out there praying for me, and I know your notes and emails really brighten mom's day. So again - thank you! You have made  such a huge impact on my life! :-)

Another day

Still in the hospital. They have ruled out pneumonia and blood clots. It's just fluid that is in the sac around my lung, which they call pulmonary effusion. The Dr says that lung is also collapsed. They don't worry if you can get it out pretty quickly, so that's what I have to try to do for the rest of the day with some respiratory aids.  Last night, they were afraid that there was a small tear that the drainage tube in my back may have nicked. Then all the gunk in that abscess drained from my back into my lung. They don't think that's what happened now, though, phew! They looked at the fluid around my lung and said it doesn't look like the pus from the abscess, just water. So, they've given me antibiotics last night and a diuretic today. The hope is that the diuretic will dry out some of the fluid in the lungs. It better kick in soon because it's hard to breathe 1 teaspoon at a time. It's amazing - it takes me like 10 minutes to get from my bed to the bathroom (in my room) because I have to walk so slow or I run out of breath! So, they'll get another xray tomorrow and re-assess what needs to happen. If the fluid is draining, they will let it work itself out. If the fluid is still there, they may decide on the drain. I'll keep everyone posted!

2 steps forward, one step back

Well, yesterday I started a new medicine that will thin the gunk in my stomach. We're hoping that it will help so that I'm not constantly fighting to unclog my g-tube. And it seems to be working well - I haven't had any blockages since I started that med (knock on wood). Yay, right? Well yes, yay for that. But it can't ever go smoothly, can it? So, I am back in the hospital with pneumonia. :-(

I woke up about 4 am with pain in my left side and difficulty breathing. I laid around till about 1 when I decided I should probably call one of the doctors, especially since the weekend is coming up. They took a chest xray and my entire lung is filled up. The drs are a bit scared since it happened so fast to this extent. SO... they've admitted me to the hospital to keep an eye on me. They're not positive what it is - the xray shows a "pleural effusion" which means that the sac around my lung is full of fluid, or it could be pneumonia inside my lung, or there may be a hole in my lung near the abscess I have that has drained into my lung. They have ordered a CT scan, and are putting me on antibiotics and a diuretic to try to get the fluid to drain. They will take another xray tomorrow to see if the fluid is draining. If not, they will have to put in ANOTHER drain tube. I really hope they don't need a drain - I should be getting them out, not putting them in! So, please send your prayers this way. I just want to be able to breathe!

Sent via BlackBerry from T-Mobile

AND...Lew sent me 2 fabulous bouquets of flowers. One with a dozen red roses to remind me how much he loves me, and one mixed bouquet to brighten my day. Thank you so much, my love. That was EXCATLY what I needed! Muah! ;-)

One more thing...

I forgot one very important thing... I have received cards and notes from some of you this week. Thank you SO much! They really brighten my day, and mean so much to me. Sally, the photos you sent were just what I needed. I have them hanging up right now so I can look at them all day. So thank you, everyone, for your kind thoughts and words - they mean the world to me!

Finally, an update!

Ok, it's been a few days since I've posted...sorry, sorry! It has been a very rough few days. My g-tube (the tube that drains my stomach) keeps getting clogged, so all sorts of nasty crud sits around in my stomach, causing lots of nausea, vomiting and pain. I know the different hospitals approach this in their own ways - AZ does not place a g-tube, MN does. At this point, I cant even imagine how I would feel if I didn't have this tube. But when it gets clogged, it's like I go into septic shock or something. My whole body feels like it's on fire, and just shakes uncontrollably. Then mom has to try to flush it, which is not an easy task. Last night it was about 3 hours before she could get it unclogged. This is not something I was warned about before the surgery, so just know that it will play a huge role in your recovery. Just as an example, after we got it unclogged today, I drained over a liter of nasty, gross, thick-as-molasses bile in about 3 hours. I promise that it does not feel good to carry that much around in your belly when you can't get it out!

Anyway, my sister Erin came out to visit for a few days. She was so funny - it has been gorgeous and in the 70s here, but she was freezing. I had the window in my room open because I was hot, while Erin is all curled up in a ball wearing a ski jacket. I've finally found someone who is colder than my mother! Then again, neither one have an ounce of body fat on them. I am taking one for the team by showing them just how much money you can save in outerwear when you are pleasantly plump.  :-) The other photo is one we snapped walking by the Ronald McDonald House. That's where the families of children receiving treatment stay while they're here. It is really a gorgeous facility! You can see my enormous belly in that picture - I am still carrying around so much in my stomach that it is just huge right now.

I had an appt with Dr. Dunn on Monday. Every time we meet with her, we are just amazed by this lady. I am so confident knowing that God placed her in my life. She is so kind and attentive and really listens to what you say, but she's no BS when it comes to getting things done. And when I've complained about anyone (1 nurse I had trouble with, and 1 Dr), she addresses the behaviors quickly and directly. I just love her. I have another appointment with her next Tues 3/20. At that point, she will assess how much longer I need to be out here. She said probably 1-2 weeks after that Tues appt. As anxious as I am to get home, there is a lot of comfort here knowing that I'm very close to such great medical care. I can't even imagine dealing with some of these issues as an outpatient in Tucson. She wants me to be here when I start eating because that changes your insulin needs drastically. While I've been sick these last few days, my blood sugars have been going all over the place, and it hasn't been fun. I will feel much better being right here until I have that in check. But I am so ready to be home in my own bed!

That's all for now. I will try to update more often, which will hopefully mean that I am feeling better!

3/10 update

Hello all! Today was a pretty good day. I had an appt over at the clinic this morning. (I thought it was with the transplant fellow, but he was conspicuously absent - again.) Anyway, they drew some blood and everything looks pretty good there - nothing alarming. The nurses were super nice and loaded us up with more supplies. It's amazing how many syringes and rolls of tape and bandages that you need after surgery. If anyone reading this is pre-TP-IAT, I definitely recommend stocking up on supplies at the hospital. The nice nurses will give you anything you ask for. This stuff alone would certainly break the bank, and don't even get me started on the number of medications they have you take!

After that, we came back to the apartment. Mom decided to walk to CVS since the weather was so gorgeous. When she got back, I decided to join her on another short walk. Since we're unfamiliar with the city, we ended up taking the "scenic route", which was a bit further than we'd intended, but I managed to walk about .6 miles! I was really proud of myself that I could make it that far!

Then this evening, I actually started to feel a little hungry so I capped off my g-tube and had a few bites of jello. I was completely full after 3 or 4 bites, but I managed to keep my tube closed for over a half hour! I know, 3 bites of jello is hardly impressive, but I'm celebrating all the little baby steps along the way!

Well, that's about all I've got. No Dr appointments tomorrow, so we'll just hang out all day. The weather's supposed to be nice again (in the 60s), so I'm sure we'll venture out on another walk. I just need to keep progressing so I can get back to my home sweet home!

3/9 update

Hello all,

Nothing new and spectacular here. It was kind of a blah day. My g-tube (the tube that drains the contents of my stomach) got clogged, and that always makes me feel yucky. Usually a walk will help stir things up, but not this time. (However, in my quest to walk, I managed to walk on the treadmill for 10 minutes today! Yay me!)  :-) Anyway, I finally got the stupid tube unclogged late this afternoon, and have felt much better since.

The only other news is that yesterday and then again today, my blood glucose dropped pretty low. It was an easy fix - apple juice brought me right back to the normal range. I told my endocrinologist and she wants me to lower the amount of long-acting insulin that I give myself every day. This could mean that my islets are starting to wake up - yay! Hopefully the trend continues!

It's supposed to be 60 degrees here tomorrow! Mostly warm weather the whole week. Tuesday's forecast is 65! Maybe we can get some walking in and explore the stores around the university. I still don't have much stamina - I need to build up my endurance a bit, but it sounds like the weather this week will be very conducive to that!

That's all I've got. I have an appt tomorrow morning with the transplant fellow. Not quite sure of the purpose of this visit. Probably to find out if I've been miraculously healed and have no more nausea. Where are Jimmy and Tammy Faye Baker when you need them????

Just checking in...

Hi everyone, just thought I'd pop in and say hi. I'm feeling pretty good overall. The first night home from the hospital was absolute hell - though more on mom than on me! I was scheduled to either take some medication or change my tube feeds or something. I even set my alarm so I could at least help out, but I completely slept through all alarms and equipment beeping. Needless to say, it was a night from hell.

On Wed, we had a 7 am appt (ick!) for "follow-up". Well, I guess somebody "told" me that I was supposed to bring all my meds, but my drugged-up, just-out-of-surgery self plain forgot. This really ticked off the nurse. They said I was dehydrated and put 2 bags of saline in me, and basically sent us home. This, of course, was after the nurse decided that I should cut my pain meds in half and try to stretch out the time in-between. I'm fine with trying to reduce the narcotics, but not once did we ever see or speak with a doctor.

They wanted to see me again today (at 8 am, but I negotiated to 10!) This time we brought all my meds. The nurse asked me if I was less nauseous - I said no. So she left to call the Dr (I assume) who said I need to start taking zofran again. Zofran has never worked for my nausea, and I reminded her of this. She said, "Yes, I told him and he says he doesn't care." Seriously. Then they sent me home. Without ever reviewing my meds (which we remembered to bring this time). And still never saw a Dr. My main Dr (Dr. Dunn) is amazing, but is out of town till Mon so her service is covering her. Anyway, I'm going to call Louise (the transplant coordinator) tomorrow about all this. I'm done lugging myself down to the hospital to be treated that way. I think the goal here is that I have to be able to clamp my g tube (the one that drains my stomach contents) before I'm able to eat anything. But I have to have my nausea under control before I can clamp my tube, and my nausea is NOT under control. If you saw what was coming out of that tube, you'd be nauseous too!

So there - I have done my checking in. Other than the nausea, I'm really feeling pretty darn good. The pancreas pain remains gone! I only have 3 more tubes to get out of me. :-)  I have to keep ahead of the surgical pain, but it's all getting better each day. I love and miss everyone back in Tucson and can't wait to see you all! Not sure exactly WHEN that will be, but soon enough... :-)

Medications displayed alphabetically - ha!

More meds in the fridge

We're out of the hospital!!! :-)

Hi, Megan here... Yay! That was a bit longer than even I anticipated - the drs say 10-14 days in the hospital, real experience average is 11 days. I put myself at 2 weeks figuring something would pop up, but ended up there for 18 days. Oh well, I'm out now!

Overall, I'm feeling pretty awesome. Yes, I get tired just walking into the living room. My belly is still swollen and distended. It's tough to get anywhere when you have tubes and drains and pumps attached to your body. But it's not pancreas pain! It's just your plain ol' "got yer guts ripped outta yer belly" kinda pain. But let me repeat - THE PANCREAS PAIN IS GONE!!!@

It's pretty overwhelming to see everything we have to do. The list of meds alone looks like a re-stock order from CVS. There's all my liquid nutrition, plus the bags and pump for feeding, along with the enzymes I need for that. And don't forget all the diabetes testing supplies and the insulin that I need to give myself.

Mom has just been amazing through all of this. My pain and nausea drugs had to be "scheduled" to make sure the levels stay about the same. Unfortunately, this means that we're waking up about once an hour through the night - not fun! But mom has organized all my meds and what needs to be taken when, and all of my feedings and what goes along with them, and just so many more other things.

I did a ton of research before this surgery on the process, success rates, procedures, risks and benefits, but I really don't remember reading about the absolute necessity of having an organized system in place to know what needs to be done and when to do it. This is really overwhelming when you see the vast quantities of everything that has to be done. And i can help with some of it, but I'm so loopy most of the time I don't even know my own name. Seriously, I know mom has LOTS of stories!

I will try to attach some photos to this post. Hopefully that works! I really want to thank each and every one of you who have supported my family and me throughout all this. Your prayers have gotten us through some real tough situations. Please keep them up, as I know we will be facing more in the future. So, thank you, thank you, thank you!