Today's update

I met with the transplant surgeon today to discuss a gastric pacemaker. I took notes so I'm going to just copy those. More train of thought than cohesive story, but you'll live. :-)

He said that the pacer won't improve my gastric emptying. It usually helps people with intractable vomiting but thats about it. He thinks I'm a high risk patient for the surgery and that the possible benefits are far outweighed by the risk of coplications. I guess because I've had previous abdominal surgery. I've already had a mini trial as to the success when I was on the domperidone. That helped with my gastric emptying but not the nausea and vomiting. The pacer would do the same thing as the domperidone - make my stomach move - and since the med didnt really help, he doesn't think the pacer would. He said that he is a very conservative surgeon and that he was sure I could find someone to give me a pacer, but his opinion is that I wouldn't benefit from it. I told him my goal was not to get a pacer but to find a solution and/or options to make me feel better. If a pacer isn't the answer, I'm not going to go running around to find someone who will tell me what I want to hear.

He did say that he thinks the gastroparesis is a red herring and he believes that my nausea is probably caused by something else. He just doesn't know what.

He was very impressed that I was looking at every option possible and was proud that I have taken the initiative to control my own medical care. If he only knew, eh?

He did give me the name of someone in Louisville who basically  invented the pacer surgery. This dr is now doing a noninvasive temporary pacer that he places endoscopically. If patients respond to that, it's likely that they would benefit from the permanent pacer. It's pretty low risk, so I'll probably investigate that path. It might be worth trying.

That's all for now. I'll post an update once I see the pain guys on Wed.

Where's the sun?

I am here in MN. It is cold.

I am seeing a transplant surgeon this afternoon to discuss a gastric pacemaker. Then on Wed I am seeing 2 doctors at the pain clinic. I'm really hoping that I can get some answers, or at least some new options to try to manage my pain, nausea and GI issues. I will update everyone at the end of the week. Keep praying!

Brrr!

I am going to MN on Sunday (12/15). It is -2 there right now. There are not enough layers in my giant wardrobe to protect against that.

I am seeing one of the transplant surgeons to discuss a cardiac pacer, but I don't think I'll end up going that route. We'll see. I'm also seeing the pain team there. They're good folks, so I hope they can do something. I'm pretty discouraged, though. I've come to realize there is nothing that can physically be done for me, so it's all up to my mental control. I'm not strong enough yet to overcome the (perceived) pain. Whether it's real or all in my head, it still hurts a lot. And I still have horrid nausea. Maybe the snow will freeze the puke out of me!

I have had my fill of tests. I had a gastric emptying study, which showed delayed emptying,  so they ordered an upper GI barium series to look for blockages. That showed a mass, so the dr ordered a CT scan to look into that. The mass was gone on the CT, but they found some irregularities on my liver, so ordered an ultrasound. That test just came back to say that they saw a growth on my liver, so now they want an MRI. Yeah, are you as dizzy as I am? I'm sure the liver stuff is due to my islet transplant, but my local doctors want to get an MRI so I'll indulge them a bit since they're also trying to figure out what's wrong with me.

And that's about it. I still feel lousy but trying to fake it since it's all in my head anyway. Now I just get to fake it in -2 weather. Brrr!

My chain hang low

I still have nothing of consequence to report, though I did have some interesting images. Last week I had a barium swallow test to look for any obstructions or strictures in my bowels. Nothing showed up. They also took an xray, which showed a couple of interesting things. First, there is a mass in my abdomen (where the green arrow is). The radiologist doesn't know what it is, but was "guessing" food or medication. My primary doc doesn't like that answer, so she ordered a CT scan. (God bless her - I just threw all this at her today and she wasted no time trying to help me out.) There is also something that looks like a chain (see red arrow) when you zoom in (seen in the other image). All weekend I was positive that someone dropped their necklace in me when I had my TP-IAT. I went down to the hospital to talk to the radiologist today. Ends up that it IS a chain, but is there on purpose. It is called an anastomosis chain and it is linking loops of my bowel together. The radiologist said that it would not cause any pain, though I'm yet to be convinced since these 2 things are exactly where my pain is.

So, that's about it. I'm still waiting to hear from MN as to what their plan is. I was really hoping to get out there this year, but that's looking less likely every day. I still need everyone's thoughts and prayers, please. I'm still in a lot of pain and continue to get more discouraged every day. Please, God, let someone figure SOMETHING out!

My xray machine has a cupholder!

I'm sitting in the hospital having an upper GI and small bowel study. Nothing exciting, just drinking some barium. But...on the pre-exam xray, the radiologist saw an odd little blob right where my pain is. He had no idea what it was. After I drank the barium, you couldn't see it anymore. I don't know what that means - that it was just an artifact or that the barium blocked it out. I so hope it's real. I know that sounds awful, but having something to explain all this pain would mean I can do something about it! (And I'm not just a drug-seeking hypochondriac...) At the end of the test, he said the blob got smaller so was probably something more like food rather than a cyst or stone. He saw no obstructions or strictures or anything, so it sounds like another waste of time with no answers...   :-(

Otherwise, there's not a whole lot to report. Frankly, I feel like shit. I'm trying my very best to start living a semi-normal life and just accept that this is how I'm going to be. Most of it is mental anyway, I'm sure. I'm not going to give up looking for answers and relief, and I still really need all your prayers from that. It's so hard to stay positive when there's no end in sight.

Dr. Dunn has been amazing. She's been talking to my local docs, reviewing test results, and consulting with her colleagues to come up with a plan of action for me. I really need a hero right now and she's doing that. Louise has been just as wonderful - hammering down on doctors for charts and answers. I just wish it could all be faster!

Gastric emptying study

Thursday I had my gastric emptying study. From the looks of it, nothing is moving (still). You can see a pretty big hiatal hernia, though. I was diagnosed with a small one during my last endoscopy, but my GI didn't want to do anything about it at the time. I'm not sure if it's grown since my endoscopy or not. Maybe it will be worth fixing during surgery in MN, if that ever happens. Dr. Dunn is preparing for a conference that she's hosting this weekend, so hasn't had time to get back to me yet. Hopefully next week. Now that I've decided what I want to do, I want it done now! (I'm so patient...)

Otherwise, things are still about the same. I've had a lot of pain this week and have only made it out of the house for appointments. I wake up several times a night, so I'm tired all the time. I'm trying to keep a positive attitude so I dont start spiraling downwards again, but it's tough sometimes. The waiting game is one of the hardest parts - not knowing the answer and not knowing WHEN my drs are going to give me their recommendations (other than to take more meds). So, keep up the prayers - I need them!

Back in bed

Well, I'm back in bed again. :-(  The pain I've had on my left side has continued to get worse and worse, and I haven't been able to get out of bed or do much of anything except lay with my heating pad. It totally sucks. Last night I woke myself up gasping and crying in pain. I've decided I just want to pull out the big guns and go for the surgery. I'll have it done in MN - a GI will put in a gastric pacemaker and Dr. Dunn will remove scar tissue (and probably fix a couple hernias). I know the scar tissue can, and probably will, come back, but I have to try something different.

I've contacted Dr. Dunn to see when she can get me in, but I haven't heard back yet. I'm going for another gastric emptying study tomorrow, which should clinch the need for a pacemaker. I'm also going to see the pain dr here in Tucson next week. This is absolutely a last resort, as those close to me know. I'm hoping that he can maybe do something like an epidural or spinal block or something to get me through until I get a surgery date. Dr. Dunn and I talked about this surgery when I saw her in August - I'm just praying that she agrees with this plan and can get me in quickly. Keep your fingers crossed for me!

Chewing the fat

I saw my local GI last week. The last time I saw him, he wanted me to increase my meds that make my stomach move. It was supposed to help with my nausea,  but made it much worse. I got to the point where I couldn't even lift my head without vomiting, so I backed off of that. I'm still nauseous every day, but I'm not puking my guts out anymore. My dr was baffled by the increased nausea (whaddaya know....). Maybe I should start taking syrup of ipecac. Isn't that supposed to make you puke? It would probably make me feel better.

The latest plan going forward is for me to go on an extremely low fat diet and call him in a few weeks to see if I feel any better. If not, he's going to proceed with the gastric emptying study to see how long it takes to digest my food. I've kind of started on the new diet, though I haven't been great at sticking to it yet. I've missed red meat too much from before my surgery to give it up now. Ok, not smart, I know. I'm trying to find a balance.

So, that's about it for the current plan. I don't find myself feeling a lot better when I do stick to the diet, but it's probably about consistency. My diarrhea is as bad as ever and he didn't have any great suggestions for that except to try a different med. I don't want any more meds!!! My pain is still there and flares up pretty bad at times, too. It's all so frustrating...

Update from MN trip

Well, I am back from MN. I swear, every time I go out there, I feel better, with renewed hope.

My first day was full of testing for the study I was part of. They took 120 vials of blood that day - totally crazy! Fortunately, they place IVs in my arms so it's only 1 poke to get all that blood. Tuesday morning was more testing. The results were basically that my blood sugars are very well controlled and I have no need for any kind of insulin or meds to control my blood sugar. There is always a chance (and actually a likelihood) that I will one day have to go back on insulin, but I am controlling my blood sugars so well that it won't be anytime soon. Yay!

I saw Dr. Dunn on Tuesday afternoon. She is pleased with my progress, though she acknowledges the major issues that I'm still dealing with. Based on my abdominal pain and completely paralyzed stomach, she believes that I have adhesions that are sticking my stomach to the abdominal wall. My local GI is having me increase the medicine that's supposed to make my stomach move (which has made me incredibly nauseous), and is going to re-test the time it takes my stomach to digest food. If that number is still really slow (last time was 5 1/2 hours to digest half of a hard boiled egg), then surgery may be helpful at that time. Dr. Dunn would go in and remove the adhesions and also have a gastric pacemaker installed. It's the same device as a cardiac pacemaker - they just set it to 5 beats per minute instead of 60. I'm not crazy about another surgery, but I would rather fix the cause of the problem than treat the symptoms with massive amounts of medicines. At this point, I have to take 16 pills of this one medication every day, in addition to all the other meds I'm taking. I'll deal with that when it's time - God will lead me to the right answer.

That's about it. We've settled back into a routine in Tucson and I'm trying to increase my activity without doing too much.  My goal is to do one thing each day (like run an errand) which gets me out of the house, but doesn't leave me bedridden the next day. The kids are back in school now, which forces me to attempt to parent at least a little bit. I figure the wolves that have been raising them thus far have done a pretty good job, so I can still leave most of it to them.  :-)

Im attaching photos of me with Peggy, the research coordinator (in the scrubs), Dr. Bellin, the endocrinologist (with the figure I'd die for), and Dr. Dunn, one of my most favorite people in the whole world. I'm sad that that photo ended up blurry, but I still love her, blurry or not!

More non-news

Well, since I've been back in Phoenix, I've been to the eye dr (I need glasses), to the dentist (I need 2 root canals, among other things), my primary dr (who told me I need a Psychiatrist, but doesn't know any names) and my GI. Twice. (Who told me to just double all my GI meds.) Oh, and he has never seen anyone with gastroparesis as bad as mine, ever. And he's 83.

So, once again, no news is no news. Nothing has changed, except I'm throwing up more. My GI told me that there's a study in Kansas that implants a pacemaker  in the stomach to make it beat 5 times/minute. My problem is that my stomach is completely paralyzed, but my intestines move food through me faster than a bullet. (Just guessing....a bullet is one of the only things that HASN'T been inside my GI tract, I think!) Also, I'll be in MN this Sun-Tues for routine testing, but I'll ask Dr. Dunn what she thinks about that pacemaker. At this point, we're going to try doubling my meds for a month and then testing my gastric emptying while I'm on that (very expensive, of course) med. If we can improve the number with more drugs, that will mean great news to him. I'll keep you posted...

Oh, as an aside, I do, indeed, have trigeminal neuralgia. However, according to my neurologist, it's very easy to control. He gave me a 2 week supply of meds (God bless the meds) that took all the symptoms away. Yay! I haven't had any new incidents since. He ordered an MRI to check that there's nothing in there pushing on the nerve, but I think the brain scan will come up with absolutely zero findings. That will explain a lot.  

I need a straightjacket

So, it just never ends. I've been getting this horrible pain in my face that is pretty close to being up there with pancreatitis. Seems silly, but it is just excruciating. I, of course, have self-diagnosed and think it's something called trigeminal neuralgia (TN). http://en.m.wikipedia.org/wiki/Trigeminal_neuralgia (Hey, I self diagnosed my pancreatitis, so I'm not all that bad with this sort of thing.) Anyway, they have nicknamed it the "suicide disease" because of the pain. Of course, it's not easily controlled and your two options are more drugs (just what I need) or brain surgery. Fantastic, right? And there's no way to clinically diagnose it. I'm going to the neurologist on the 29th, so won't know anything until then, but the description matches my symptoms exactly. The odd thing is that one of the drugs they use to treat it is a med that I'm weaning off of. Seems awfully coincidental, don't you think? It's still odd, though, because TN is caused by a blood vessel laying on the trigeminal nerve, so it's a physical thing. Who knows, maybe I've had it for a while, but the med I was on just masked it. That seems to make more sense. I swear, if I didn't refuse to go to the ER at all costs, I sound like a perfect example of Munchausen Syndrome! Whine whine whine, I know. I think it's about time to just check me in to the looney bin. There must be people there who are crazier than I am, right? Right? Sigh...

Update from last week's EGD

Hello everyone.  I just have a quick update with some (mildly) interesting  news. I had an EGD (endoscopy) last week due to difficulty and pain with swallowing. My Tucson GI said that I had a hiatal hernia, a lot of red/swollen tissue, and a flattened pylorus (the tube that leads out of your stomach). I have no idea how or if any of that is related to my pain, or what they do to take care of those things. He said he also witnessed severe gastroparesis. That one was a little troubling because the theory was that my gastroparesis was due to the large amount of narcotics in my system, and would go away once I'm off the narcotics. Well, guess what...not happening. I have to make a follow up appt with my GI to discuss the results and the path forward from here, but at least he saw a little something that may be treatable. It's odd that the scope I had about 6 weeks ago didnt show any of that, so is it all new and developing, or did my other doctor miss it? Either way, I'm just hoping he can provide some solutions. I'm kind of frustrated because everyone blamed the narcotics on everything, but now a year and significantly fewer chemicals later, I still have the same symptoms as before-abdominal pain, constant diarrhea, inability to speak coherently, or even form original thoughts. No improvement other than my head is clearer, which makes things worse because now I'm aware of how truly braindead I really am. I still have to make a follow up appointment with  my local doctor, so I'll update everyone once I have a path forward. He's also going to investigate solutions for my other GI issues as well. I'll keep you all apprised! C ya!

2 wonderful people in my life

I just have to give props to my pain doctor – Dr. Marcia Mastrin in Phoenix. There are very few doctors out there who are willing to manage pain control and narcotics, and I've had some very bad luck with other doctors in the area. Dr. Mastrin worked out a very sensible plan to wean me off of my narcotics.  I'm happy to say that I'm completely off of the Fentanyl. (Whoop whoop!) Even better, she gave me some other meds to help with the side effects and, other than a couple of achy days, I really haven't had too many withdrawal symptoms. I've heard such horrible horror stories of how this goes, but thus far I've been pretty comfortable.

I also must give a shout out to Debbie Vendt at Angel Wings Wellness Center. I have had several Reiki sessions with her and she is just amazing. Whether it's pain, depression, stress, or anything else going on in your life, I've just been amazed at how well Reiki works. It's considered alternative, of course, but all they do is have you lay on a bed and lightly touch certain parts of your body. I had it done for the first time when I was in the hospital in MN and it was the only time during that hospital stay that I was completely relaxed and out of pain. Now that I'm doing it in Phoenix, I think that it has helped me tremendously with withdrawal symptoms, pain management, and just a better outlook on life. (I've really struggled with understanding my purpose in life now that I'm not working, and this has given me a lot of clarity and eased my anxiety about it all.)

Anyway, I just wanted to send out some thanks to these 2 amazing people. If you live in the Phoenix area, these are the folks to see. And if you don't – you should definitely seek out Reiki as part of your healing.  I wish I had tried it a year ago when my health first started going downhill! I've learned that recovery from major surgery (or any other traumatic event) takes much more than just medicine. It is impossible to heal just the physical scars when there's so much more to the trauma. It's taken me a while to realize this – too long – so I hope others can take my word and at least give Reiki (or other methods) a try.

Nothin'

They found nothing today. Everything looked completely normal on both ends. I guess I am just a hypochondriac and/or a freak of nature.

On a bittersweet note, I found out today that my Social Security Disability has been approved for life. I want to do everything in my power to be able to go back to work one day, but it is a bit liberating to know I don't HAVE to.  :-)

Need extra prayers tomorrow

Tomorrow I'm having an endoscopy (top end) and a sigmoidoscopy (bottom end) by a Mayo doctor that I really like and respect. I'm having trouble swallowing food, so he's going to look to see why. "Take a look at your swallowing tube," as he would say. Then he's going to go in the other end and take some samples to try and figure out why I've had diarrhea for a year now. I've done everything they've told me to do, but it will not let up. So, I'm just asking for some extra prayers that he finds something that will point toward treatment and a cure. I'll post an update once I'm out. Thanks - love you all!

A big thanks!

Hello ladies and gents. Not much exciting news to report, but I thought I'd at least say hi. So, hi!

I got a call from MetLife the other day. They're currently paying my disability until (or if) my social security disability is approved. Their first phase is "can she do her job" and that answer was approved as  no. The next phase is if I can work ANY job, utilizing my education, etc. The "no" to that was also approved. So now, they just need to check in with me on a yearly basis. I don't know if that's good news or bad news, but it is what it is. Now I'm just waiting on what the social security guys have to say about it.

Please keep praying that I continue to heal and one day become a contributing member of society. I know those prayers are there. Others have mentioned that they can tell that I have thousands of people praying over me, so please everyone, keep it up. You are all so special and valued by me - I don't even want to think where I would be now if it weren't for all of your prayers. So...thank you, thank you, thank you!

Cranky update

Well, I guess it's time to update again. Let me just say that weaning off fentanyl is a bitch. There's no other way to put it. As my pain doctor said, "It's like every little ache and pain you've ever had is multiplied by 10." My whole body aches, like the worst flu you've ever had. Muscles, bones, organs, everything. Then there's the headaches, diarrhea, nausea and projectile vomiting a la The Exorcist. And forget trying to stay awake for more than an hour at a time during the day, or sleep more than an hour straight at night. Not fun. At all. I've been doing this since October and yes, it takes that
long!  On the bright side, I should be off of all narcotics within a few months and back on my way to my old, cheery self. Or, my old self, at least...  ;-)

I had a great conversation with my pain doc the other day. She said the grumpiness is to be expected (then apologized to my mother, lol) and the aches and pains and stomach issues are part of the process. Because fentanyl has such a long half life, I will continue to feel this way for about 3 months after I'm completely off of it. And it will be 4-6 months before I get my brain back. I miss that brain and hate this shriveled up raisin I've had to work with in the meantime. My doctor kept relating this to heroin withdrawals. I asked her if I should just start using heroin, but then I realized I have no veins so that would never work out. :-)

There were good things to hear, too. In my hastiness to get off meds, I had stopped taking some of the meds that will help with my withdrawal symptoms, or I took them irregularly at best. So, I set up a system to take them at regular times and I must say I've been feeling a bit better the last couple of days. I've had more energy and don't feel like I've been run over by a mack truck, more just like a medium-sized sedan. Plus, she gave me a cream to try on my left side where that horrible sore spot is. Whatever it is, it causes excruciating pain if I cough, sneeze or yawn, and moderate pain just breathing sometimes.  I'm happy to say that the cream is a tremendous help - yay! I can actually breathe without pain again! This is a big deal to me!

Well, that's all I've got. Enough already, eh? Remember to hug your loved ones! :-)

The beautiful Cami is 12 years old!

She's on the far left in the black tank top

Cami's boyfriend CJ

I thought everyone would like to see - I sure did!  :-)

It's not easy being round...

I need to clarify my steak post...I have NOT gained that much weight - I just get the big belly at times after I eat, then it goes back down to my normal svelte manatee silhouette!

Exciting news - boy or girl?

So, which is it? You won't believe this! Twins!!!
Well, that or a steak. Sorry, nothing more exciting than just a side effect of that pesky little act we call eating. I thought this part was over after the surgery, but alas... At least it was a good steak!
Not much new here. Guess I need to make another GI appt. I'm on a new enzyme and also a new med that makes my stomach move. It seems to be helping my nausea but a side effect is that it makes you lactate. If it's not one thing... Though I should mention that I've been able to drop a couple of meds due to the success of the above mentioned ones, I'm slowly but surely weaning off the narcotics (I'm now at a third of the dosage I was on 6 months ago), and I've only had to take about 2 units of insulin since last August. Me, the one with the lousy islet yield, with a 7% chance of ever getting off of insulin. And look at me now - no insulin, no diabetes-related pills or meds at all. Now THAT is truly a miracle and I KNOW it's because of everyone's prayers! I just have to remind myself of the progress I've made sometimes when recovery feels sooo slllloooooowwwww. I am insulin-independent! I may not always be, but I am today!
The kids are doing really well here. Cami turns 12 next week, God help us all. She has turned into a very pleasant, delightful young lady who I love to be around (though I don't think Kyle would agree).  :-)  She is in gymnastics and cheer, but mostly likes to hang out with her friends at the park. She got straight A's this quarter, for the first time since 2nd grade so we're very proud of her. And Kyle, too! He got all A's and one B, so he also inherited his mom's super smart-dom. ;-)  (Hopefully theirs sticks around - mine is long gone! I think astrophysics is no longer in my future...) Kyle is super funny, with a quick wit and it very talented at sports. He's playing baseball up here in Phoenix and then will pick back up on the karate when he returns to Tucson. And he's quickly approaching 11. Man oh man! But forget the kids, how did IIIII get so darn old?!?!
As Cami said before, please keep our family in your prayers. In addition to many family members with health conditions, my 9 year old cousin Skylar passed away last week. It was sudden and unexpected and the family is still trying to get over the shock of it all. She lived her life to the fullest each and every day, and touched so many people, she serves as a reminder to us just how precious life is. So hug your kids, or your mom, or even your icky brother - just don't take for granted that today you can tell them you love them!

Update on mom

Hi everyone! This is Cami. My mom is too lazy to update so I am doing it for her. Anyways, my mom just got back from Minnesota a couple weeks ago. They gave her a couple new medications to try out. Its been helping with the nausea and GI problems but has not completely solved it. She still has some pain too. We are in tucson right now visiting Lew and other family and she's doing pretty good with it. I'm sure if we were in phoenix though, it would be easier. But then again, there's no place like home. She didn't do very well with the car ride. Hopefully she'll do better on the way back to Phoenix. There's nothing else really new with my mom or any of us.

Just a special thank you to everyone who has helped my mom recover. All of her doctors, especially Dr. Dunn, who saved her life, Lew, Susan (mom or Bama), Art, Erin, Mike, Lisa and Bill. And everyone else who I didn't mention. Even sending her flowers helps so thank you. Without you guys my mom would not recover half as fast. And I'm asking for you all to pray for my mom to gain her health back, and to be able to cut down on the meds, and not have to take insulin anymore. Also please pray for my Great- Grandpa Jim. He has become very sick this past year and my mom and all of us are very worried about him.

That's it for now but I'll try to keep you all posted if my mom can't post. And she knows its almost been a month but I'll keep bugging her.

From,

Cami :)

Tuesday update

Well, we had a crazy busy day today, but got a lot done. I had a bunch of tests (see yesterday's post) and met with 2 doctors. The first Dr I met with was the psychologist who works with pain management and the pancreas team. Today was really an assessment, where he realized that basically, I'm bat shit crazy, lol! He and the pain doc are working together to develop a plan that includes weaning off the narcotics, learning how to control my pain, and shift my way of thinking that I have no self worth while I'm unable to do anything that contributes to society. I also saw Dr Dunn today. I told her that I highly recommend they have all of their patients meet with these guys before they go home. I have seen many post-op patients who have lots of troubles around the 6 month timeline. She wants to talk to the whole team tomorrow, but it sounds like we're not going to do surgery at this point anyway. I was lukewarm on the idea - I'm not too excited about having ANOTHER surgery, but I was kind of hoping for a quick fix. Dr Dunn thinks that my massive amount of scar tissue is definitely contributing to my pain, but removing that scar tissue can cause pretty severe complications if the bowels are perforated or kinked in any way. So, I think we're going to sit tight for another 3 months or so and see if my pain improves using these other techniques first. And I'm OK with that. Tomorrow and Thursday I have tests for the study drug that take 3-5 hours each day. Friday I meet with the pain doc again. I think we'll be here for about 2 - 2.5 weeks depending on when the psych and pain guy can fit me in. By the way, it got up to 4° today. Tomorrow is supposed to be much warmer. 22°. And snowing. Plus the wind was literally picking up people a la Wizard of Oz. Much fun. How do people DO this every day? Brrr!

Balmy weather

OMG. Tomorrow it is supposed to be -35 outside. Yes, thirty five degrees below zero. How is this even compatible with life?!

Update from MN

Hello everyone,

Well, I am in Minnesota again, for both my 1 year post-op visit and also to meet a whole gaggle of doctors who will try to figure out why I'm still so jacked up.

I saw the pain management doctor first today. He said that I am extremely sensitive to pain and looked at it from a physiological/psychological perspective. He believes I'm trying to focus on my end goal (returning to my previous lifestyle, working, etc) instead of healing what's ailing me in the moment. This is true - I am always looking for the time when I will live a normal life. (As normal as possible, anyway...)  I think a lot of it is learning how to practice mind over matter. He has a program where he works with the psychologist- they see the patient about 3 times each over a couple weeks, then send you back home to practice it for 3 months, then come back for some final sessions. He believes I suffer from PTSD stemming from the surgery. Since I define myself as valuable by the ability to work and take care of my family, I have a tough time when I'm unable to do those thing. Personally, I think the PTSD label tends to be a bit over used, but I guess the surgery could be identified as a traumatic event. Either way, I'm willing to try new things!

Then I saw the GI. He is definitely interested, but quite baffled by me. He ordered some tests, and wants to talk to the team at their group meeting Wed night. Then Dr Freeman came in. He's the one who finally diagnosed all my pancreas issues. I just love the guy. I even gave him a big hug, and for those who know me, you know how much I hug!  ;-) He suggested changing out my pancreatic enzymes;  I will be on those for the rest of my life, though I had to take them prior to my panky-yanky so that's no big deal.

So, tomorrow (Tues), I have an appt with the psychologist, Dr Dunn (my pancreas surgeon), bloodwork, an EKG, a CT and a Dexa scan (measures the calcium in your bones).  Then Wed and Thurs I spend the day doing tests from the study drug. Friday I meet with the pain dr again. It sounds like I will be here about 2-3 weeks, as long as I don't need surgery.  Î should know much more by tomorrow, so I'll do my best to update y'all as soon as possible!

Hello all. It's been forever, I know. I wish I could say it's because I've been out having so much fun that time just flew by, but alas...not yet. I have really had a hard time finding good local doctors who are familiar with my condition, so when my health started to degrade about 6 or 7 months ago, problems just stacked up on themselves and I became one big medical mess. I still have abdominal pain, severe GI problems that have spanned both sides of the spectrum, and multiple other issues that come and go. I'm still unable to work, or even care for myself during the day. So, back in November, I moved up to Chandler (about a 2 hour drive) to live with my mom. I came home for a couple weeks around Christmas (which was wonderful), but knew that I needed full time help to take care of myself and the kids. So now the 3 of us are here living with my mom and stepdad for the rest of the school year. (Lew and I are still great - he just has to stay where there's a paycheck for now.) The kids are doing amazingly well with the transition, diving right in to both school and social activities. All my siblings live in the area, so now the cousins get to see each other much more often. Having all this family support is really helping me emotionally - knowing that the kids are getting the attention that I couldn't give them alone. My mom has been my rock up here, driving me to appointments, making meals, and holding my hand through all my nonsensical anxiety attacks.

We have found a much better team of doctors up here, so I feel that my care is better managed than at home in Tucson. I am headed back up to Minneapolis in mid-Feb to be seen by the team up there. Hopefully, somebody there will be able to figure out how to "fix" me. Louise told me to buy a one way ticket and the team will put together a plan on how to proceed. It may be that they send us back to Chandler for coordinated care at home, or keep me in MN for a while longer. I may need surgery to repair some hernias and remove scar tissue, but we shall see. So in the meantime, I'm just trying to get better and stronger on a day-by-day basis. I'll try to remember to update my blog so everyone knows what's going on!

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!