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!