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!

Boxes of liquid nutrition

Supplies for dispensing medications

Day 16

This is being dictated by Megan: Overall a pretty good day today. I think we've managed to keep the pain under control as long as we stick to the schedule. Nausea is becoming easier to control as well. We've been on lots of walks and did some exploring today, as well as lots of naps. We saw signs saying there was a floating pool on the 7th floor. We didn't know what a floating pool was. We went up and only found a door saying floating pool staff only. When we came back to the room, we asked the nurse what a floating pool was. She laughed and said it was where the pool of float nurses reported for their assignments. We are such dopes. We were hoping to be able to float around. Wouldn't that be a good therapy?

Cross your fingers the doctors said I might be able to be discharged to the apartment tomorrow- woo hoo! From there we will follow up with doctors during their regular office hours. I'm scared, though, because right now at the push of a button I can have a Popsicle delivered to me. Now I'll have to get out of bed to yell at mom to bring me a Popsicle!

I just want to thank everyone for their thoughts and prayers. My family and I are surrounded by your strength.

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Day 15

Megan was very nauseated and in pain this morning. That doggone g-bag was clogged again. She was just was dozing of when that connection came apart -AGAIN. A ton of stuff drained (all over the bed and Megan) but she felt better. She decided to take a shower and that tube drained like crazy right down the shower drain! She felt SO much better! We're thinking maybe taking a shower first thing in the morning might help her day go better. We sure hope so.

Meg had a great afternoon. We even walked down to the pharmacy to buy a pill crusher for when we're allowed to go to the apartment. She's watching t.v. - mostly doctor shows! She says at least those patients get well in an hour! Some of her sense of humor is back!

It's been cold and gray all day. Please send some sunshine our way!

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Day 14

Megan had a rough morning. The night crew fell behind giving her pain and nausea meds and she felt pretty bad. Her gastric tube keeps slipping apart. The nurse worked to get her caught up on meds and we took a walk. Dr. Dunn came by and said that she had ordered a CAT scan to move the drain and also to check for an encapsulated abcess. If they find one they will attempt to drain it then and there.

Meg has been wearing a fentanyl patch. Today we noticed some sort of reaction to it. The hospital pharmacy called the CVS inTucson to determine the brand of the patch she had been wearing successfully before. So now she has a new patch.

Dr. Dunn also ordered a new med to make her stomach contents less thick and a little more slippery. Hopefully the tube will drain more easily. Once she is pretty much nausea free then she can cap that tube. That's when she could begin to try to eat some clear liquids. At this point, that seems a way off. There is a possibility that Meg will be released to the hospital on Sunday orMonday. Again it's just a wait and see game.

Meg just returned from the CAT scan and the drain did not need to be moved and they did not find another abcess. Dr. Dunn was kind of hoping they'd find more and that removing it would relieve her nausea. But, they did not remove the drain because the abcess is still actively making fluid. Again, wait and see.

Meg feels better this afternoon. If we could just conquer the mornings.... Prayers for continued healing and an end to the nausea.

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Day 13

Megan is still doing well. She has met all of her physical therapy goals. Now she needs to work on regaining her strength. We know it is a process but we are anxious to have
Meg back to a normal life.

Dr. Dunn is very pleased with Megan's food and insulin. She said that has gone as smooth as silk. Areas of concern are the abcess and the nausea. Dr. Dunn changed the two anti-nausea drugs so that they would overlap. The gastric tube is getting clogged less often. But the danged thing keeps coming apart and dumping yucky fluid everywhere. Even taping it has not been successful. We are searching to solutions to this problem.

Meg had her first shower today and there were sighs of delight! She said it felt wonderful.

This has been a cold, gray day. We're really yearning for some Arizona sunshine. We're waiting to see if Meg spikes a fever again tonight. If she does, she'll have a CAT scan tomorrow. Dr. Dunn is hopeful that if there is an abcess that the drains are not reaching that they will be able to aspirate that pocket. This would be better than placing another drain, for sure.

I think it won't be long until we are released to the apartment. This is the next important step before being able to go home. We don't know how long we'll be at the apartment - it could be as long as a month. It will depend on her progress. Please pray for a quick and full recovery.

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