Oct 1, 2008

So, things are still going really well. No pain, no meds, life is good! I think I will start to take pepcid again though, but it's not bad. I think my islets have woken up a bit more and digesting food has gotten a lot easier. I will admit I rarely take my enzymes and don't have a problem unless it's greasy foods. so thankful on that one! I recently went back to the endocrinologist and all looks great. They aren't sure exactly what will happen with me in the future but we discussed that I only have to take 4 units of insulin a day and that I never have to take corrective. He stated that he thinks my plan was too agressive in the sense that I'm insulin sensitive since my islets weren't acting out of whack before the surgery so recommended that I never take corrective unless I go over 200. I have yet to get anywhere close to that. in fact, going low is a bigger concern for me, so I'm thrilled at that. I probably should be better at taking my sugars, but I'm blessed in the sense that I am never out of the normal range. So it's definitely possible to not be "diabetic" in the sense that I don't meet the normal criteria!

Follow Up with Endocrinologist

Yesterday I had my appointment with the endocrinologist to go over everything again since surgery. My A1C, which is your 3 mo. avg blood sugar, is now 6.3 on 2 units of insulin a day. When I left the hospital it was 1.9 and then at about 5 weeks, it was 4.9. 4.9 was the lowest end of normal, so we checked it now and anything under 6.5 is good, but 6.0 is usually meaning that my blood sugar runs on average at 120, which is the highest of the norm range, so I am a bit over that. The results were during withdrawal and the nausea so it can make them go up a bit if that has been going on for 6 weeks. I talked to another doctor about the withdrawal symptoms who said the withdrawal is lasting so long because of the fact that I don't have a pancreas and can't break down the proteins properly to re-heal. he said free amines are absolutely necessary (milk, rice, soy) or you can get a supplement of amino 3,6, 9 and fatty acids. I'm going to see if I can get mine through milk before adding pills since I am off all meds and just have the one shot a day. we discussed with the endocrinologist possibly switching to this new pill to try to manage the "diabetes" but it was not tested on humans during pregnancy and if we want a family, it'd be pointless to switch over and then switch back later (it could also not even work as well), so we're staying on the 1 shot a day and going to do 3 units because if I am going to do it, it's best to keep the levels in normal range, since I'm already sticking myself! Anyways, I will go back in September to see him and retest the levels and make sure everything looks alright. I go back to see the gastro doctor on tuesday since being in the hospital, so we'll see what happens there and hopefully get some questions answered!

How the Scar has Changed Already

So this is my scar 3 months after surgery. You can tell it's already started healing and it's still numb, so it's kind of weird there. Yeah, you can see my new tattoo as well. Like I said before, the part by your belly button is the hardest part to heal and will usually be the thickest part of your scar. I embrace it though. It's part of me and I'm not embarrassed of it. Getting my tattoo, so many people wanted to look at it and I'm okay with that. "Scars are like tattoos but with better stories". If anyone has any questions or wants to talk before/during/after surgery, I'd be happy to compare stories or answer questions. My email is nabernathy@aerodyneng.com. Good luck!!!

My Reward for Completing 10 years of CP!

So, Since surgery I have been basically starting over with life and learning how to deal without so much pain and discomfort. I also wanted something in my life to remind me how strong I am and how much I have overcome after 10 years of chronic pancreatitis and bad doctors, etc. So on May 16th, I decided that I was going to get a tattoo of the pancreatic transplant ribbon on my right hip (a couple inches to the bottom right of my scar) and I absolutely love it. It's a reminder to me how I suffered and succeeded and the pain from the tattoo was a piece of cake and almost comforting to know that this part of my life is concluding and we're going to make it. Now, obviously not everyone is going to go out and get a tattoo, but do something when you're done with this surgery and part of your life and make yourself feel alive. For the first time, I felt like I controlled my life and my body and it was the best feeling. I've also decided that I think I am going to go back to school for nursing and it's almost a pay it forward thing for me. I've had bad nurses and bad doctors and it's time to do something and learn from the bad things I had to go through and I will be damned if I ever am a bad nurse to someone that is suffering. Good Luck. Nicole

Back up to Minnesota-3 Month Follow Up

So, mom and I flew up to Minnesota yesterday morning at 6am. We had a layover in chicago and then got to minnesota at about 8:30am. We went straight to the clinic because since I had to fast, I knew I was going to get blood work and thought maybe they could do it before the appt. I went to the counter and told the lady that I had a 10:30am appt but I was going to need bloodwork and to do the research boost test where they take your blood before you drink it and then 2 hours later. our flight was leaving at 1:30, so I wanted to make sure we got everything done. Well, ended up we didn't get any blood work before the appt and got to see Dr. Sutherland around 11am, which he was really upset that they didn't do any of it after he asked them to. So I rushed over to get the blood work and started drinking the boost and then they just did the after bloodwork at like 45 minutes afterwards, since that's the best we could do. Seeing Dr. Sutherland was amazing. He couldn't believe how well I was doing and I passed with flying colors. I am off the pain meds that I have been on for countless years and the scar is healing fine and I am feeling pretty well. In all, it was a great trip and so reassuring to hear that I am doing well. We discussed the fact that the enzymes upset my stomach and the nausea and vomiting is still around and he thinks that my body is producing too much bile and it's sitting in my stomach now that there isn't a pancreas. There is a surgery he recommended that would cut the duodenum and re-route the bile 45cm from the stomach and then cut some nerves to prevent the reflux. They would go through the same scar, but that is where the conversation ended. I didn't want to talk about that surgery and said that I think I'd see how time helped before considering another one since life is kind of starting over for me now. He said that even time could possibly help and heal some of the places that have been re-routed, so that is the plan for now. We finally got home around 7pm last night and I am wiped. 4 flights in one day does a number on your back and neck, let me tell you. So in all, things are going exceptionally well and it's pretty exciting. I do hope anyone that experiences this surgery does as well as I do, but if you don't it's ok, you will get through it and just do the best you can. I got so frustrated going back in the hospital and still feeling pain, but I have to remember that it's only been 3 months and that is nothing compared to 10 years of pain. I heard that Dr. Sutherland is operating on a 17 yr old girl tomorrow that has has chronic pancreatitis since the age of 3. She has been home schooled this year because it has been so bad. My heart goes out to her because I know how bad it sucks to have pain everyday but she will be so thankful to have the surgery in high school where she can go on to college and not miss a thing. I wish I had my surgery earlier. Oh, one of the funny things is that Dr. Sutherland recommended botox for my constant frown line from the pain. Thanks Sutherland, i'll keep that in mind! If you haven't met him, you are missing out because he is one of the best things that has come into my life and he is so caring and sweet. All he could say was how well I looked and how nice it was to see an actual smile on my face. He is a rare doctor and it's sad that there is only one of him because every doctor should be exactly like him. That's all for now!!! Love, Nicole

You will have a pic line in your neck. This was the scariest thing to me. it doesn't hurt or anything. It's held in place by two stitches. Although, me being moved from ICU, it got caught on the bed and one stitch tore out. still didn't really hurt that bad, FYI. This looks scarier than it is and it's a Godsend when they take blood like every 2 hours. They can administer your meds through here, take blood, and they gave me my blood transfusion through here. It is so much nicer than having IV's in your arms and trying to sleep. Although, I did have two other IV's in my arms, they came out after a couple of days so it makes it much more comfortable. I even slept through some of the blood draws since it's so quick and easy. Also, I was terrified of it coming out. They tell you to take a breath in and it was out before I even realized what happened. You don't feel a thing.



Alright, here's the big thing... This is my scar after 4-5 days post surgery. You will have TON of fluid in your body and it will look like your 5 months pregnant when you're out of surgery. Don't worry, they start giving you lasix to get rid of all the fluid. The scar didn't hurt too bad and after the first couple of days, things are really pretty good. The first night it was impossible to breathe without agonizing pain and so I would breathe shallow breaths that made my heart rate sky rocket, but do what you got to do. I didn't sleep the whole first night and they finally adjusted my pain pump and I slept from sat pm to sun pm! They also had to mess with my NG tube twice on saturday so I'm sure that helped add to the sleep. As much as I hate NG Tubes, you don't want them adjusting and pulling and pushing on them, so just stick it out the best you can. I didn't take pics of the NG tube because I hate them. Mine came out on tuesday and probably a little too early but it makes me feel so much better that I can fight off the other things. You will have a catheter too but mine came out on monday I believe, just as soon as you can get up and move around on your own! Walk, walk, walk, I am telling you. They won't let you walk on saturday but I think starting on sunday they did. (I had surgery friday morning). The only problem you may have is right by your belly button. It's where your natural bend is so my scar is pretty thick and raised right there, but I think it gets better each and every day. You won't be able to lie on your stomach for a few months because of the pressure, but you'll be okay and comfortable on your side, i know. So, these are about the only pictures I took of the surgery. I recommend taking a lot of pictures because you're going to want to look back and commend yourself for getting through something like this. Also, when you get home, put vaseline on your scar every chance you get. it'll stain tank tops so be careful but it makes it heal so much better and faster.

3 Months Post Surgery

So, everything was going really well, Well enough that even I was shocked at how well I was doing. well, we all know what happens when we say that. I had been tapering off the methadone since the surgery (not by choice). I wanted to get off the same way i did the fentanyl lozenges and just never get back on any of them. Well, i was on 80mg prior to surgery each day and left the hospital on 60mg without a problem. Each week, I would drop 5mg and it would kind of hurt for a day or two, and then go away, so no problem. Well at the end of april, the 27th to be exact, I was done tapering and was completely off the methadone. Those first three days were the worst. I felt like my bones were breaking in each part of my body and it would continually do it over and over again. I read online that someone called it feeling like "barbed wire was wrapped around your bones". Well, I also read that baths and things like that would help a lot. So, i think I took about 50 baths a day for that. Mom was there with me and after 72 hours, i felt much better, so i'm thinking that it is over with. Well, that 4th day, I couldn't get up without passing out and feeling so weak that I was going to pass out. Mom took me to the doctor and my blood pressure was 80/50 and my pulse was 60. I had been so tired that entire weekend and just thought I was coming down with something. Well, the doctor thought it may be the clonodine that the hospital put me on for the withdrawal. (Let me tell you- it doesn't help a bit). Clonodine, not Klonopin, is designed for people with high blood pressure, but the .1mg is used to help with withdrawal. Mine is usually always low, so do not stop taking it cold turkey otherwise it will sky rocket your blood pressure. So, I go home from the doctor and feel okay, just weak and go and lie down on the couch. This is when I didn't know that wednesday night would be the last time I would sleep for 5 days. The withdrawal pain came back, but just in my arms this time. I took something called legatrim PM at night thinking it would help me sleep and it did actually take the pain from my legs. Well, me being me, I did a bunch of research online and I come to find out that methadone withdrawal can last up to like 6 weeks. I also read that all these peole were saying to drop 1mg per week so you wouldn't feel the effect of the withdrawal. Come on... 5mg can do this much damage?! YES!!! So at this point, i'm only through week 1 and thinking this is Bad!!! I read that you can take a bunch of things to help with the withdrawal. I'll give you the website for them, but you need to make sure you have something to help you sleep. My back and neck were so painful for not ever sleeping a second in 5 days. you don't think of that when you're lying awake. it didn't matter how exhausted I was at night, my body wouldn't sleep a second and this is VERY Common. You'll need to take a bunch of pills and they do help. Here's the site I found that listed out everything you'll need- http://www.dpeg.org/treatment/methadone_withdrawal.htm. Trust me, they are right when they say that doing this outpatient is a nightmare and you will feel like you are going to die even though you won't. Well, Week 2 came along and at this point, i couldn't keep any food down and fully dressed in my sweats and sweatpants, I couldn't touch 100lbs. You'll feel very cold all the time and I can't even express the sneezing. I can sneeze like 6 times in a row. it's a side effect of the withdrawal. Once the worst pain and everything is over, you'll just kind of feel like you have a cold for a few weeks. Well, no food, no sleep, weight loss like crazy, and low blood pressure meant it was time to call the doctor. I didn't know who to call because my family doctor was out of the office, so I called my gastroenterologist who has taken care of me for years. He admitted me to the hospital and came to check on me hours later. He looked at me and said, " I just saw you two weeks ago, what the hell happened?" I was pale, feverish, and so weak it was unbelieveable. Nothing would stay down no matter how many differnt kinds of anti-nausea drugs they gave me via my IV. The other down side is at this point you're so dehydrated, it's almost impossible to get an IV. I'm a hard stick anyways and my veins are tiny, so this made it worse. I was in the hospital from monday to friday and we probably went through 10-15 IV's. Oncology was called and everything. After getting sick so many times, i finally called thursday night at midnight to my nurse and begged her to find someone to get an IV. IV meds was the only way I was going to sleep and possibly not get sick AS MUCH. They called this nurse administrator that worked in the ER for 18 years and she got an IV in my hand on the first try and I didn't feel a thing. The down side was that my vein was so small, phenergan couldn't get through. If you ever are in this situation, you want phenergan. it's an anti-nausea med and it makes you super sleepy. I was given ativan to help me relax and compezine for the nausea. Those two together will make you sleep but you're kind of stuck in half awake, half asleep mode because I sent quite a few babbling emails that made no sense to some of my customers on my blackberry. Make your husband or someone take away your phone!! My mind was thinking it was still working and had things to do, but the body was sleeping. Honestly, I don't know if you could get through that second week with the nausea without the help of a doctor or something. I am at the end of week three and working normally again. They sent me home on librium, ativan, and ambien. Ambien will help you sleep and take the ativan with it so your body can relax. I truly think I'm over the worst part, but I can look back on it and think to myself, how did I get through that???? You are stronger than you realize, but no one should have to suffer like that, especially when there was no rush to rush off the meds. Now I wanted off of them asap, but I wouldn't choose the way I did it. Talk to your doctors, inform them of what is going on... my gastro doctor had no idea what I was going through for that first week and he would have done everything he could to make it comfortable and ok. I still feel like i have a cold and sneeze constantly but no pain or anything and I cannot wait until this period of my life is over. If you've lived with chronic pancreatitis, you know it sucks and you want it gone, but there have been times where I think I would have taken that pain back then go through what I went through a few times in the past couple of months. Also, my gastro doctor realized that my digestive enzymes weren't strong enough, so we switched to Creon 20, which are like 3 times stronger. Just keep in check with your body and if something doesn't feel right, write it down and talk to your doctor. I am so used to doing things on my own that I suffered when I shouldn't have. And Thank God for family and friends that are supportive and can understand what you are going through and don't push you away. You need the support and you need someone to talk to. On the other subject, I tried the vivarian root and melatonin to help me sleep and it did nothing. Get a prescription sleep aid. Trust me. I had the vivarian root, melatonin, an OTC sleep aid, and tylenol PM and still couldn't sleep a wink. You will start going crazy without sleep. So, In all, This has been the worst thing that has happened since surgery, but it had to happen and I am just glad to be working my way past it. Good luck to you all that is going through this surgery. Oh, I don't think I ever mentioned this, but the first night of surgery, you are going to feel like you can't do it, it gets much better the second day, especially when they adjust your pain pump as needed. Take short shallow breaths and it won't hurt so bad. Breathing is what is going to hurt the worst. I constantly felt like I had to sit up or lie down. Do it as often as you want. No one knows what you're going through and seconds of comfort is worth it. I go back on May 21st for my 3 month check up since I was in the hospital for my first appt on the 7th. I'll let you know what I find out! I have pictures of my scar on my myspace page. it's not too bad. trust me. it'll be worth it and hey, scars are like tattoos but with better stories. Love to you all! Nicole

2 Months Post Surgery

So it has been just over 2 months since surgery and things are going really well. I went to see my gastroenterologist about a few problems but he wasn't do much help, unfortunately. In fact, I caught him in a terrible mood and he proceeded to tell me how he wants to see how I'm feeling a year from now since there isn't 50 yrs of research behind this surgery, so of course it wouldn't work.... now, in that same sentence, I did hear again that it's common for the cells to die after a year or two, so I'm a bit worried after hearing that from two doctors (my endocrinologist ang gastroenterologist). I am planning on going back for my 3 month check up on May 7th. Mom and I are goin to fly up that morning and fly home that afternoon. I need to go up and do some blood work and also do the research test with the boost drink to see how my body digests it. I have had some pain since surgery and at times, it's pretty severe, but it's not the old pain at all! I am having some problems with food though. My theory is this- it's been so long since digestive acids and things have been able to get through and help digestion that since things have been re-routed and fixed, I don't think that my stomach and things are used to it so they flare up and cause a bunch of pain and discomfort. I am hoping that things die down and get used to normal functions and these things all go away with time. In reality, I feel like I'm in the best case scenario from this surgery. The pain is completely gone and I am pretty sure now that I won't be on any insulin or pain meds soon and that is pretty amazing. I just can't believe it. It's so weird that life can switch like that even after so long. You get so used to living a certain way that you can't imagine it any other way and that's sad. It's sad how people can get used to that and deal with it. No one should have to deal with it but I believe we aren't given more than we can handle even though we feel that sometimes it is too much. I am currently only on 10mg of methadone (was on 80mg before surgery and left the hospital on 60mg). I taper it by 5mg each week so I should be completely off my pain meds in two weeks or so. I never got back on the fentanyl suckers though, thank God. I am currently on 4 units of the long lasting insulin (left the hospital on 18 units) and still haven't had to take the corrective at all, so that is nice. We will be lowering the insulin again soon since my levels are all normal and checking out great! My three month average was excellent per the doctor, so it's all looking really great! I have been working 32-33 hours the last couple of weeks, so I am starting to work the normal 9-6 this week, so we'll see how I do with that. So, I should have an update after my check up in May! I am going to stop writing on a weekly basis since there isn't much change anymore but anything that changes or meets a milestone, I will write!! Thank you so much for all the sweet thoughts and caring calls and hugs. I couldn't even imagine how many people have been involved during this and have worried/cared and thought of us during this surgery, so I can't express my gratitude and appreciation for that. Love, Nicole

Post Surgery Day #39 10:30pm

So, I was planning on going to work today but I woke up this morning sick and in a lot of pain. James got up at 6am and went and got me some pain meds and some other meds to help. This would be the 3rd time since surgery that I've had to take my pain medicine, dilaudid, and I hate that. I have the choice to take 4mg or 8mg, so I haven't had to take more than 4mg, but I still absolutely hate taking pills, especially pain pills. Yesterday, my blood sugar for dinner was super high and today it was the same thing and then I finally remembered that each time I ate about an hour before dinner and if you don't wait 2-3 hours, then your sugar is peaking high because it's digesting food, so it's not an accurate reading. Yesterday I had to take 1 unit of corrective insulin, but I didn't do it today since before I ate i was still in the 80s, so I was pretty sure I was okay. That is one thing that you have to try to remember when you're taking your blood sugar. Also, wash your hands! One time I had eaten a cookie a few hours before taking my blood sugar and i took it and it was like 160! I took it four times in a row and it dropped to 150, 130, 110, and finally 75 after I washed my hands a few times on a paper towel. If I would have taken corrective insulin at the 160 mark, my blood sugar would have plummeted really low from the accurate result of 75 and it can make you become hypoglycemic and you can pass out or even go into a coma if it gets really low, so be careful to any future patients! If your reading seems abnormal, wash your hands and re-take as many times as you think needed. Well, Tomorrow will be the first day back to work and I am going to take it easy! A lot of you have expressed your concerns and I appreciate it! I will take it very easy and ease back into work and all the lovely stress that comes with it! Sorry I haven't posted in a while! Not much goes on during my days of recovery besides resting, eating, and watching TV! :) I will let you know how tomorrow goes! Love, Nicole

PS-I have a special favor from all of you that read this blog. Please pray for the Greene Family. They are going through something right now that is very tough and sad for everyone involved and I want to respect their privacy but also give them the prayer support they need. Please keep them in your prayers and pray that they get through this tough time and that God watches over them.

Post Surgery Day #29 7:30p

We went to see the endocrinologist yesterday. He was really nice and very helpful. He informed me that right now, I'm not considered type 1 diabetic because of the surgery, but we'll have to keep an eye on it to see if I can be off of the insulin on my own or have to continue with it, which I will then be diagnosed type 1 diabetic. The good news is that I had blood work done and when I left the hospital, my AIC Levels (not sure what that means, but it shows how much insulin my body is making on its own) was 1.8. Today they called and said the AIC level is now 4.6. She said it's still a bit low, but I might be able to be okay without the insulin. We are going to take it slow though. Today we dropped my daily insulin from 10 units to 6 units and my levels are still in normal range. The doctor said my levels looked great, so I'm doing really well. Unfortunately, he told me something that was a bit worrisome. He said that he has seen that people's islet cells die after a year or two of working and then I would become type 1 diabetic. That wasn't that bad of news until he started talking about the fact that with all of that my hormones would get out of whack and I would have a very hard time conceiving or carrying a child to term. He recommended that if we are planning to have a family, the sooner the better, he said. Obviously, this is something we already planned on doing anyways now that the pain is gone and I am off the suckers, but it is definitely good to know that there could be problems later, since we never heard that the cells could die after a few years. So we plan on seeing how my glucose levels are in the next few weeks and as long as they are okay, we will drop the insulin to 4 units and then get off them all together and see how it goes. Other than this, things have been the same. The incision is healing really well. The upset stomachs and tiredness are still there and still aggravating. I really would feel better if I knew that these upset stomachs will be going away in the near future. I know they told me before the surgery that the exhaustion would be the hardest thing and that it would take 8 months to a year to feel better and over this, but jeesh! I didn't really believe it! I figured a week or two and I would be back to normal. Guess I was wrong! So, I am planning on starting back to work on the 17th if all is going okay. I think I'll start working half days. If things haven't improved much in the meantime, I may push it back a week, but that is my plan right now! One of the good things is that I am actually doing homework while I am home! I will let you know if anything else changes! Love, Nicole

Post Surgery Day #25 8:15p

Everything has been going well. Rita, Bruce, Brandi, Ben, and the girls were over here on saturday and we had dinner and hung out. I was able to chase the girls around that night, but slept quite a bit on sunday to make up for it. That's ok, it was well worth it. We also went to Megan and Brian's friday night and it was great to see friends. I went to the office on friday for a baby shower and stayed for a few hours to do some work too, so I did have quite a busy weekend. I was pretty tired today too, so I didn't do much. I think mom and I are going to get out of the house tomorrow. we got all the glue off my incision and it looks great. It's already starting to heal really well. We keep putting the vaseline on it and it does seem to help a lot. there are places where you can't even really see the scar already! So, after a few weeks, the only things going on are the upset stomachs, tiredness, and back spasms from walking hunched over. The back spasms are becoming farther apart now that it's a bit easier to walk upright. It's weird because I don't even notice sometimes that I'm walking hunched over. I still haven't had to take the corrective insulin either. It's really weird because last night my insulin was 49 before dinner, which is really low. Normal is 70-120. They said that when you're low, you're really be able to feel it and I didn't feel any different. I know friends that have passed out and become disoriented being low like that, but I felt completely fine. It's kind of frustrating since I don't feel any of the differences and have to rely completely on the meter when they told me in the hospital I'll be able to tell where I am on the scale. Although, I'm usually always on the low end, so maybe my normal is lower than others. I don't know. Anyways, that's about my only excitement. I am hoping to go back to work in a couple of weeks. I promise I'll start out slow! maybe ;) alright, that's all I have for now. I'll write again in a few days, but not much is going on right now other than mom and I just hanging out and her taking care of everything around here! Love, Nicole

Recovery Day #20 5pm

I am sorry I haven't been on in a few days!! Things have been pretty good. Today, mom took me to get some lunch, get some pants hemmed, and then picked up some chinese food for dinner in brownsburg! China's best!! yum! So that was about all I could do today. Still no pain, which is amazing! The biggest complaint I have is that I get an upset stomach often. I take zantac in the morning and evenings,which help, but it wears off after a few hours and I have a sour feeling in my stomach. It's just very uneasy. Mom took me to target on monday and I got some tums, which really help, especially when I eat. I think with how many pills I have to take with each meal, they really upset my stomach. Today we got all the glue off my incision and it looks really good! I am amazed how thin it is and it's already a light pink color, so I'm really hopeful that it will be a very thin scar. We keep putting vaseline on it which really helps it heal. Just FYI- mom works for a plastic surgeon and he says the best thing you can do for a scar is put plain vaseline on it and it really does work!! We got some scar guard stuff for later when it's a bit more healed, but I am just amazed at how quickly the incision is healing. There is just one little part that has a scab on it, but that's it. You can put the vaseline on it right after you leave the hospital and it helps get the glue off and help it heal. So, we're recovering quite well. Besides the sour stomach, the other big thing is the lack of energy. I will tell you now I am amazed at how little energy you have after this surgery. I know being in the hospital takes a lot out of you, but also your body has a lot of recovering to do internally. I went to target for maybe an hour and then went to lunch at olive garden and I was wiped and it's been 20 days since surgery. I think that it will come back soon, but I will tell you right now to the future patients- get lots of rest!! You will feel so much better. I pushed myself pretty hard one day and it took 2 days to recover and I almost slept 2 days straight! Sleep when you need to and you'll recover much better. That is one thing the doctor was adamant about! REST!!! So, other than that, I don't really have any more incision pain or anything. I will tell you that when you walk hunched over, your back will start killing you! I get these back spasms and wow! they hurt a lot! don't put heat on it either during a spasm! it makes it worse! So, that's about it. no pain is amazing!! so, so amazing!!!! Lori, duncan, Megan, and Brian stopped by last friday and Lori said that she could already see a difference in my eyes! She said they have a brightness to them now! that almost made me cry! I really feel that my life has started over since Feb. 8th! 10 years is a long time to have pain and you forget what it felt like before then! let me tell you... it's great! I am so thrilled to not be on suckers anymore and am weaning off the methadone, so soon there will be no more pain meds! I will have to take digestive enzymes for the rest of my life, but hopefully the majority of the pills will die down after a while. Oh, I forgot one thing... The doctor said my islet cells are in the 4000 range. between 3-5000 is the range where your islet cells can begin to work on their own and you can get off the insulin. I am very hopeful I will not be diabetic once they start working after 6-8 weeks! Anyways, that's about it for now! I will definitely keep this updated more! Thanks for thinking of me and the sweet thoughts and prayers are so greatly appreciated! Love, Nicole

Post Surgery Day #14 10am

So, nothing really went on yesterday. My back is really starting to hurt with all the coughing and not being able to walk upright, so I had to put a heating pad on it last night, although it didn't do much. So, I was pretty inactive yesterday. This morning I got up and Mowery Heating is here! As another surprise from my parents (like they haven't done enough for us), dad was going to try to complete the whole fireplace and surprise me when I got home from MN. Well, since I recovered so quickly, he didn't have time to do it, so they just told us about it. So, the gas guy is here and is running a gas line so we can have a gas fireplace! I can't say it enough how much my parents do for us! We are super lucky and I feel bad that they have done so much during this surgery!! So, other than that, I'm just sitting and recovering. My glucose levels are still in good levels with just the long acting insulin, so I still don't have to do the corrective insulin! My pills have decreased a little now that I'm done with the big antibiotics, so that is nice! Well, other than that, I'm feeling pretty good and getting up and moving around as much as possible! I will keep you posted! Love, Nicole

Post Surgery Day # 12 11:30p

Today was my first day home! We got home last night at 10pm. It was such a long day and I was so exhausted by the time I got home that I was on the verge of tears! It's amazing how weak and tired you are from surgery! I slept on the couch for the elevation and James slept on the other side of it. I woke up this morning at 8am to begin my days worth of pills and James went to mcdonalds to get me some breakfast. Well, he came back and took his temperature and it was 102.5! He ended up staying home today and he looked awful. He was all pale and was coughing and sneezing like crazy. Mom came by late morning and sent james upstairs with some medicine. I slept on the couch until about 2pm and james woke up shortly after completely soaked but without a fever. Thank God for mom because she helped me shower and did my hair and also did all of our laundry and helped around the house! She's just absolutely amazing and I am so lucky to have her! I can't say it enough! She decided to make me some dinners for the week so she made a list and I was getting stir crazy, so she let me tag along to the store. I got to ride in the motorized wheelchair! we couldn't stop laughing!! The first one I got in had a flat tire and it was super bumpy and hurt so bad! We switched out and it was much better! It's so hard to see things at that level!! So, we finally left there and that little bit made me exhausted. We came home and she began making chicken enchilada casserole and chicken and broccoli casserole. I sat in a chair by her and helped cut an onion and some chicken, but she basically did all the work! We had part of one for dinner and then froze the rest for later. She's coming back over tomm. to help clean the house and help me until I can get on my feet a bit better. I can get around and walk, but my legs are pretty shaky on the stairs and the energy level just isn't there yet. My insulin levels are still doing great just on the 24hr insulin, so I haven't had to take any before meals. So, not any big news today. We're just taking it easy and settling in and slowly getting back to normal! Talk to you tomorrow! Love, Nicole

Out of Hospital Day #5

So, we're having a bit of deja vu.... we're sitting at the airport and our 2:30 flight has been delayed due to late arrival of our plane. the current departure time is 3:20, but still no sight of the plane yet and it's almost 2:30. We had our appt this morning with dr. sutherland and everything went great. My hemoglobins are back up and are at 10.3! We discussed the flu and he was quite surprised that they would even give me the flu vaccine with my current condition, so did agree that it was the flu. So, we also found out that nicole can never pursue a life as an alcoholic. I can still have liquor but have to be careful getting drunk because of the diabetes. He did say that my islets are at 4000 and between 3-5000, 40% of the people get off the insulin completely! I haven't had to do any of the corrective insulin when I eat, so I'm hopeful that I can eventually be off it completely! I also got a bit of joy because mom brought up the fact that I wasn't eating much and james and mom have been on me a lot about that and he actually said to not push it whatsoever since there are new "hookups" we need to give them time to heal and start working, so he said it was absolutely fine that I'm not eating much now and definitely wouldn't eat until I'm full and stuff! i looked at mom and we both started laughing! ha! :) so, a bit of relief for me! I am ready to be home! we have a few hour layover in chicago, but it'll be fine. We got to the airport and the wheelchair came and got me and we got checked in and everything, but when we got to the security, we ran into a mean guy! I said i could walk through it instead of waiting on someone to come down with a special wand and we got up to the thing and he made me stand to the side forever and made all these people go by me! well, this security lady said something to him and said "she needs to get back in her wheelchair." well, he kept doing it so she finally stuck her hand out and let me through. of course, then he made us "randomly" get padded down and everthing, but it was fine. So, we're sitting at our gate, bored, and ready to start home. James last night had a 103.3 fever as well and definitely got the flu. I had to persuade him to do all the things that he was making me to do for my fever and he felt much better! he woke up at about 6am sweating, but his fever was gone and he's feeling much better. I am relieved. I was worried about him being home alone with that! So, we will be home tonight and can begin the recovery at home! I can't thank all of you enough for the sweet texts, emails, cards, flowers, and everything that I received. It was so amazing to have the support I did during this! It helped tremendously! I can't wait to see all of you and I hope everyone is doing super well!! Love, Nicole

Hotel Recovery Day #4-6:30pm

Tonight should be my last night in this hotel, if all goes well!! We got up this morning and went to the hospital at 7:30 for bloodwork to find out that no orders were put in. So, we had to wait for the secretary to call people and check on things so we sat there for over 2 hours for a 2 second blood draw! woohoo! We also found out when we got there that my appt tomorrow is now at 10am for some reason instead of 8:30am. So, we went ahead and scheduled our flight tomorrow for 2:30 and we will be home in indy at 10pm! we have quite a long layover in chicago but it will probably be good to rest in between the two flights, especially if they are as rough as the flights here! James got home last night but unfortunately has developed a fever today! He's not feeling too hot at home, so it looks like mom, james, and I have all gotten the flu bug. I still have the cough, but I believe it's from the small amount of fluid in my lungs from the x ray, so hopefully that will pass in the next few days. I think mom was pretty sick of me last night! I was coughing like crazy and she gave me some cough medicine and it didn't help at all! I think I finally fell asleep mid-cough from exhaustion! So, since I am doing this for family and friends, but also future patients, I have to add about my incision. it definitely starts itching when it heals. We put some vaseline on it last night because it is scabbing over and with everything, it cracks in some places and can bleed and we really just want to make sure we have the most minimal scar as possible. It is still numb, so I can rub my hand gently over the incision to try to scratch the itch, but the vaseline does help that to go away, so I recommend it, especially at night. So, I started to get things cleaned up tonight and as long as everything goes as planned tomorrow, I will be home in my own bed tomorrow night. The plan is that mom will come stay with me during the day until I can get around by myself. It's amazing how weak a surgery can make you. I have been trying to do stretches and walk as much as possible, but it's amazing how tired out you can get in a short amount of time! and I was in only a week. I am sure the surgery though is what is doing it. I just have to be careful to not overdo it because you can make it worse by overdoing it and set yourself back. Anyways, Not much really going on right now, but just anxious to get home! Love to all! Nicole

Hotel Recovery Day #3- 8:30pm

So, Today was a bit better than before. My fever finally went away and I got to eat three meals today. Still not able to eat a whole lot, but I am sure that will come with time and when you have the flu, you really just don't have the appetite at all. It started to come back today around lunch, so I got to eat some spinach/artichoke dip from applebees. Still had the terrible cough, which actually made me sick after lunch, so that was upsetting (and I am sure too much info), but I felt much better afterwards and got to walk a lot more today with mom. We just had some chinese food, but my fever is 99.9 right now, so I am hoping it's not on its way back up too much. We did take tylenol a few minutes ago, so that will hopefully help. Surprisingly, i've not had to take any of my insulin before the meals since my levels have been in the normal range, so that is prety good so far! I know when I start to eat more it might fluctuate, or my islet cells may start working and I won't have to worry about it at all! James made it home tonight. His original flight was cancelled due to chicago weather, but it worked out that he got a direct flight home instead. He sat at the airport for a few extra hours, but he got to watch the daytona 500, so he was pretty happy. My incision is starting to itch!! it's driving me nuts. we are going to ask the doctor if we can put vaseline and stuff on it because it is starting to scab over and we want to make sure it does the best it can when it heals. So, we'll keep an eye on my fever again and then have to head to the doctor tomorrow morning at 7:30am for labs and stuff. We'll let you know when we find out more! Love, Nicole

Hotel Recovery Day #3, 10:30 am

So the fever broke last night and her temperature is now back down to 98.1. This makes me feel much more comfortable since I am supposed to leave in about an hour to head to the airport. It is amazing how hot Nicole's arm is at the sight where she got the flu shot, but we hope that will go away some now since the fever has gone away. She was able to have a pop tart for breakfast with no nausea, so we're hopeful the worst is over. We'll keep you updated on the progress.

James

Hotel Recovery Day #2- 9pm

So things have gotten worse..... My fever overnight was up to 103.3 deg and we couldn't get it to go down even with all the tylenol and cold rags. Finally this morning it dropped a bit and right now we're on our way back up at 101.9. I truly feel that I have the flu from the vaccine. We looked it up on the internet and all the symptoms match. Also, it says that if you have a low grade fever and infection that you should not take the flu vaccine because it will cause you to get the flu due to your body not being able to fight it off. Unfortunately, I called the nurses station again and she had no idea!! Thank God for Google! Surprisingly, the nausea and vomiting didn't hurt my stomach! Things are going amazingly well in that area. I am having problems eating, but I believe it is due to this flu. I had no trouble keeping food down or not being nauseous in the hospital before the flu shot. we did do the CT scan and chest X ray, so we are pretty confident it's nothing to do with the surgery. Also, the place where I got the vaccine is hot to the touch and red! So, I am getting as much rest as I can. I was so excited to get to the hotel since they wake you up every hour in the hospital, but Tara has taken over that roll and the alarm goes over starting at 4am! So, We are going to see how the weekend goes and if things get worse, we'll go to the ER, but right now, don't feel it's any complications to the surgery. Please pray for this to pass quickly. Love, Nicole

Hotel Recovery # 1 8:45 pm

So she is finally out of the hospital and back in bed in the hotel room. Unfortunately, things aren't off to a very good start. When I got back from picking up Nicole's many prescriptions (18 bottles, 7 boxes, 3 emergency insulin syringes, and her regular insulin pens), Tara had just taken her temperature and it was back up to 102 degrees. We immediately called the hospital and they said that she has a small infection and she just got a flu vaccine today that could be also adding to the fever, so we need to just keep a close eye on it. What is weird is that she has such a high fever, but does not feel bad (except for her irritating cough). So, we are a little scared, and may have to go back to the hospital if things don't improve, but for now we are just going slow and watching things very closely.

Hoping / praying for the best,

James

Recovery Day #7-4pm

I am getting discharged! It took over an hour to get an IV in my arm and lots of sticks and tears, so I was hurting pretty good from all that. The Ct scan showed some fluid in the pelvis and something in the chest area( I don't know medical terms that they keep saying-like the infection i have!), but they said they are not worried about it too much! So, I am waiting for my meds to get written and discharge papers. We are going to stay in the hotel until my tuesday morning appt at 8:30am. After that, we're home free to recover on my nice, comfy couch! Thank you to all of you for the cards, flowers, and cheering up items! They all helped tremendously! It will feel really good to be in the hotel in a bed where no one wakes u up every hour to check vitals or blood sugar!! So, we have lowered my insulin to 10 units instead of 18, so we'll see how it goes. I did set the record for quickest hospital time, so the pancreas has pulled through in one way! I will keep you all updated throughout the weekend on how we progress and how monday and tuesday's appts go. Thanks to all of you for the sweet thoughts and prayers again! love, nicole

Recovery Day #7 1pm

Today is the day that I get to get out of the hospital! It was really iffy last night if I was going to go home tonight and we're pretty positive we still are, but not completely out of the woods yet. Yesterday, I started to get this tickle in my throat and just figured it was becuase I couldn't really cough. Well, last night at about 8pm, I started developing a low fever. My usual temp is 97 so at about 99.2, we just figured it was because of the central line, since it's common to develop a fever after having that for a week. Well, by midnight, I called james and mom becuase my temp was 100.4. At 4am, it was 101.5 and there was a dr. in my room. He ran some culture tests and kept checking my temp, every hour. It went up a bit more and held until this morning. I was then woken up at 7am to a huge glass of apple juice with sugar. I had to down three of them! After the first one, they tested my blood sugar, which was 59 (normal is 80-120) After the second one, it was 54! we had no idea why it was dropping!! After finally the third glass, it was 65, and the endocrinologist came in and thinks that maybe I'm on too much insulin during the day, which is a very good sign that my islet cells may completely work and I will not have to be on it after a few months. Well, then the doctor and interns came in and told me that my culture came back positive, so i had some kind of infection, like a bladder infection, or something like that due to the catheter. Well, I now have to drink this nasty contrast and get another IV in becuase they want to do a cat scan to see if there is an abscess in my stomach. That could be why I don't feel too terrible, but my fever is up. I have developed a pretty good cough that hurts like hell, so I just figured I was getting a viral infection. So, I just had a chest x ray as well and will have a ct scan at 1pm. We should get the results back by 3 or so. The dr said that if there is an abscess that I could get an antibiotic and a drain put in, so no need to go back in to surgery. So, I am still on track for getting out of the hospital this afternoon, I hope. We'll be up here until tuesday, when I'll meet with the dr for my final follow-up and then head home. I will keep you updated! Love, Nicole

Recovery Day #6 noon

So, I just got my central line taken out! that feels wonderful to not have that in my neck anymore!! I was worried it was going to hurt because it's super long and everything, but removing the sutures hurt a teeny bit, but I couldn't even feel the central line being pulled. that was awesome. I had my meningitis vaccine last night too, so I have two more before I can leave tomorrow. I was a huge baby about it after my nurse told me it would hurt, but it actually didn't! We are still going to do the blood thinners until tomorrow though. My hemoglobins have dropped again and they are 7.2. They start to freak out at 7.0, but mine have kept going up and down and not on a straight down trend, so we're going to wait and see how I feel to see if we're going to another transfusion. I also am apparently starting to get a fever again or something, so they are doing a few tests to make sure if I am getting sick, they can treat it before the symptoms really hit. My blood pressure dropped again but we're going to just watch that. So, I will be out of the hospital tomorrow and heard from Dr. Sutherland that he has clinicals on tues and weds, so I am hoping maybe we can see him on tuesday! So, I slept on my side and got to actually toss and turn last night (I know it sounds weird)! The pain is under control and I am going to be able to not get back on the suckers, I believe! That is wonderful news for me! So, I slept most of the morning from walking all over yesterday, so it's gone a bit quicker for me today. Hopefully, we'll be out of here in no time!!! Em, I don't know how you do these blood thinner shots. OH MY! Happy Valentine's Day everyone! Love, Nicole

Recovery Day #5 8:30pm

So, today was very long. The doctors came in and we discussed that it's probably time to switch to oral pain meds. so, we have taken me off the lipids, TPN, and pain pump today, so the only thing I'm left on is a bit of saline that should be done probably tomorrow. It's been pretty good. The pain is under control and I don't have to be on the suckers again, we hope. we got a plan from the pain management team to wean off for some months, but they are very adamant that everyone is different, so we'll have to see how everything goes. Today was probably the worst emotional day for me. Dealing with something for so many years is very overwhelming and also to get over the pyschological aspects of associating eating with pain is very weird. We have a wonderful nurse here, Liz, and she sat and went over all of this with me and explained all that she has seen qith different patients, so it made me feel better. We've walked around a lot today and I actually blow dried my hair and put on some make-up to feel human again. I still have about 15 lbs of fluid still on me, so it's weird!. It was funny walking out in the hall after that one since they didn't recognize me! So, We talked to Dr. Sutherland and Dr. Hughes today and the plan is that I should be out on friday, I believe. My diabetes counselor read thurs or friday, but I doubt it thanks to all the weaning of meds and vaccines i get to have in the next couple of days! Yeah, the bruises in the arms from the blood thinners, insulins, and vaccines aren't feeling too pretty anymore. So, hopefully we'll be out of the hospital on friday and then will have to be up here until my appt. with dr. sutherland on wednesday (he only does them on weds, i guess)so we should be home by wed night or thursday I hope! I am craving taco bell so badly! this hospital food is awful!!!! Thank you for the beautiful flowers and cards I've received! So hopefully, only a couple more days, which will still be the record for the shortest amt of time in the hospital! woohoo! Happy V day tomorrow everyone! Please eat some chocolates and lots of unhealthy food for me! Love, Nicole

Recovery Day 4 8:30pm

So, I have been up and around most of the day, which has been nice, but I'm getting pretty bored. IMy back is starting to get really sore from overuse since can't use the stomach muscles. The lidocaine patches on both sides of my incision has helped quite a bit with the pain too. I had a full liquid diet this evening which was so tasteful. right. I had cream of chicken soup without the chicken and a few bites of ice cream, so it was my first meal since the surgery. I did watch TLC all day and watched all kinds of good chef shows for good food ideas! My diabetes meter acted up today and we're not sure what is going on with that yet. it was 40 points lower than the hospital's meter. I am back on the shots of the blood thinners since my hemoglobin is back down and the internal bleeding seems to still be going on. We're either going to do another transfusion or we may just hold out and see how it goes on its own. I heard tonight that we're probably not going to do the re-surgery! woohoo! so, it looks like the plan is wean off more tomm on the pain meds and I have been on the shots of the insulin since the morning too, so another thing that is off the list. there is a male nurse here that gave me my anti-nausea med with benadryl last night so I could sleep, so I was super thankful for that! i only was up at 2,4, and 7am, and then officially up by 8:30! i know, megs, you're shocked, but I can't sleep in the hospital at all!!! :) not to mention, they prick my finger every hour to the point where they are bruised! So, hopefully we'll be out by the weekend, but we'll keep seeing. i'm still pushing for the 8 day goal. Talk to you all tomorrow!! Love, Nicole

Recovery Day 4, 10 am

Nicole slept almost the whole night last night. She is up and moving better and they were able to take her catheter out yesterday since she can walk to the bathroom herself now. She did not push her pain button at all last night, so they turned down her meds today. She was also able to start eating / drinking clear liquids today (jello, juice, broth, etc.). Because she is awake and lucid, she has had lots of visitors (dietician, social worker, diabetes specialist, etc.) and yesterday was a very busy day. She is sitting up and watching tv and movies now and definitely making good progress.

James

Recovery Day #3

My NG Tube is OUT!!! I got up this morning and walked around and then sat in the chair in my room for about an hour or so. The doctors came in and we talked to him about everything. My hemoglobin has dropped, so i have to get it tested again at 2pm. If it is lower I will have to have another blood transfusion. But since I had gone on two walks this morning and was out of bed, Dr Hughes paged Dr. Sutherland and he said i could get my NG Tube out and catheter! They have put me on lasic which takes off the fluid that is put on since it makes it harder to recover. I have about 10 lbs of fluid on me and it's coming off each day. So, the first few days were absolutely awful with the pain not being under control at all. I couldn't sleep which is the best thing for someone in pain. I finally got it under control saturday after Dr. Hughes up'ed my meds and i finally slept. The first night I had to switch beds right after surgery and the central line in my neck got caught on the other bed and one of the sutures tore, but i don' think they ever went back and re-suctured like they talked about. so i think we are going to get the catheter out next and then do the hemoglobin at 2pm up here. I am hoping to be out earlier than 2 weeks, but will need to stay up here for a few days to make sure everything is going ok, especially the internal bleeding. Thank you all for the texts! james has been reading them to me and it helps cheer me up as I have been pretty down with everything. Finally saw the incision today, which was pretty scary. We'll keep you all posted. Love you!!! Nicole

Recovery Day #2, 9:45 pm

Nicole continues to do great. She woke up this evening and said she was ready to get out of bed. She walked down the hall about 150 ft. holding on to my arm with the nurse pushing her IV pole, then she walked back with no help, holding on to / pushing the IV pole herself. The nurse said that this is great progress for someone 2 days out of surgery. Because she hasn't been taking as much pain meds, she was also much more coherent today than she was yesterday. She wasn't sure what day it was today when she woke up earlier, and I don't think she remembers much of yesterday (not a bad thing).

They are giving her nutrition supplements through her IV and that has made her blood sugar jump around some today, but the nurses check her blood sugar every hour and just adjust her insulin intake accordingly (by the way, the nurses here are very, very good). It feels like they have taken her blood sugar a thousand times. Nicole is starting to get little dark spots on the ends of her fingers from the needle pricks. Although, today she has been able to decide for herself which finger they are going to stick each time.

All in all, today has been a very good recovery day with almost no problems and lots of progress. Let's pray that things continue on this path.

James

Recovery Day #2, 5:30 pm

Nicole has been doing VERY well today. Her NG tube just all of a sudden started working again, so they shouldn't have to do anything to it. Yesterday at this time Nicole said her pain level was an 8 out of 10, and a few minutes ago she told the nurse it was only at a 3. She has been sleeping alot again, but she did wake up for a while and even got out of bed. She moved from the bed to a chair without much help and she was able to get a bath and get her hair washed while they changed her bedding, etc. Her blood pressure, heart rate, and oxygen levels have been so good that they no longer have her hooked up to the meters that read them constantly (they just check them once an hour now). Her temperature is also back down to a 98.4. The nurse is very happy with Nicole's progress and said she thinks Nicole will be ready for a walk around the halls by tonight or tomm. morning.

James

Recovery Day #2 11am

The nurse said that Nicole had a pretty good night and slept almost the whole time. She has also been sleeping most of the morning. Her condition is very stable and they said that she is pretty much out of the woods, and things should only get better from here. The nurse said that she would like to get Nicole up and moving today, and maybe even give her a bath to make her feel better, if she is up to it. Will let you know if there are any changes.

On a side note, it is now -11 degrees here with a wind chill of -36 (the sun is shining bright, but gives no heat). The Mississippi River that was flowing smoothly yesterday, froze over night last night. I have to wear long johns just to walk the 3 blocks from the hotel to the hospital.

James

Recovery Day #1 10pm

Nicole has finally been sleeping for the past couple of hours and it seems that they have her pain a little bit more under control. Her heart rate and blood pressure have been pretty high lately so they just gave her some medicine that immediately brought both of those things down (pretty cool stuff, brought her heart rate down from 137 to 108 in about 1-2 minutes).

The NG tube is a nightmare. It is not working at all (it is supposed to suction blood and any other fluids in her stomach out before they reach her digestive tract where they did the procedure). They had to readjust it again late this afternoon (horrible experience for Nicole) and it didn't do any good. They did an abdominal x-ray and it showed that the tube is right where it should be. The nurse said that she thinks it is clogged somewhere inside Nicole. Because Nicole's condition isn't declining even though the tube is not working, they are just going to leave it alone for now. The other option is to take out the tube and replace it with a bigger one, which is something that no one, especially Nicole, wants her to have to go through.

We have to leave for the night pretty soon, so we are happy that she is in pretty good shape right now. I have been reading her the text messages that people have been sending so feel free to keep sending them (317-490-8299). I'll send another update about how tonight goes once we talk to the nurse tomm. morning.

James

New room

I forgot to mention that in order to help her relax, they have moved her to a private room. It is much, much quieter, and it is always nice to have your privacy in these tough times. She is now in Unit 6B Room 225.

Nicole has not been able to talk very much yet. She can say a few words, but they are not always very audible. I am sure that she will start calling people and emailing / texting them as soon as she is able to.

Oh yeah, that horrible NG tube I mentioned earlier, it has to stay in for at least a week. Boo.

James

Rough Day. Recovery Day 1 1pm (cst)

Nicole wasn't able to get any sleep last night and was in lots of pain (she pressed the pain button 990 times in about 7-8 hours last night, even though it could have only worked a max of about 50 times). Early this morning she had what might have been a minor seizure (about 10-15 seconds). The doctor's said that if it was a seizure, it is okay, it is probably just a reaction to all of the different medications and things that are being put into her body. The fact that it was very short, and has not reoccured makes him think it was nothing serious. Nicole thinks she just sat up too fast and passed out. Her blood pressure was low this morning, but has bounced back some in the past few hours.

Her heart rate has been pretty high all day, around 130-140 beats per minute. This could be caused some by the blood thinner they have had her on. Her hemoglobin levels have been falling some, so they are now giving her a transfusion of 2 bags of blood and they have taken her off the blood thinner. There is still blood coming out of her NG tube, so they are keeping an even closer eye on that now, thinking that she might be slowly bleeding internally (this could have been caused by the blood thinner). If the bleeding doesn't stop, she may have to go back into surgery to find the bleed.

Her NG tube was not draining correctly and they had to readjust it. This was the WORST thing I have seen so far. The tube runs into her nose, down her throat and into her digestive system. To adjust it, they have to push / pull it in and out of her nose, and she gags violently every time they move it. Hopefully they have it in the right place now and don't have to move it any more.

She has now been able to roll onto her side, and she is supposed to have to sit up on the side of the bed by late this afternoon. I think the thing she needs most right now is sleep and relaxation. Tara is playing some soothing sounds cds to try to make it easier for her to relax and sleep (they work, I almost passed out).

All that said, the doc came by and said that all of her problems are the most common ones seen after this surgery, and nothing really out of the ordinary for the day after this procedure. Will send another update this evening .

James

She's in her room!

10pm - She is now out of recovery, in her room, and we get to see her until 11. She is in a great deal of pain from the move from one bed to another, but the nurses are trying to quickly get her enough meds to make her comfortable. She has blood coming out of her NG tube, which looks really scary, but they said that it "happens sometimes, we just have to keep an eye on it." The central line in her neck, the oxygen tube in her nose, and all of the IV cables make for a pretty scary sight. She is currently very uncomfortable and still very groggy from the meds. I am very glad that we've gotten to see her and talk to her, but I almost wish she would fall back asleep, just so she will be more at ease. We get to come back tomorrow morning around 7am. I hope that she is feeling a little better by then, but the nurse and doctors have all explained that the first "few days" will be very rough for her. She is in Unit 6B, room 236, bed 2. However, they do NOT allow flowers in the rooms (If you were to send flowers now, they would just show them to her real fast and then put them at the nurses station, so I don't really recommend sending them. If you MUST send them, I would at least wait about a week until she is able to move around so that maybe she could at least go to the nurses' station to see them.) It's been a pretty long, hard day and I want to thank you all for your continued support and prayers that have brought her through this safely.

James

Surgery Is OVER!!!!

The doctor just came by and told us that they just finished up the surgery and that everything went as ideally as possible. YEAH!!!! They were able to get all of her islet cells in the perfect places in her liver, which sometimes they cannot do. They have put her on a blood thinner for the next couple of days to stop any clotting in order to increase the cells chances of taking properly inside her liver. Everything has gone so well today, we are very happy. They are taking her to recovery now. They expect her to be moved up to her room in about 2 hours, at which time we should get to see her. I'll put her room number info up as soon as we have it.

James

Dr. Sutherland's update @ 3:15pm central time

The head surgeon, Dr. Sutherland, just came by and said they have successfully removed Nicole's pancreas, spleen, and appendix. They are now finished reconstructing her digestive tract. They are currently breaking down her pancreas in order to harvest her islet cells(the cells in your pancreas that produce insulin). This process of harvesting the cells takes several hours. He said that Nicole's appendix was scarred and looked as if she has had appendicitis in the past. He says that her pancreas pain could have covered up the appendix pain and she could have had appendicitis without even knowing it. He expects the harvesting of her islet cells to be finished by around 5 pm (cst) and then they will go forward with placing them in her liver. Once they have finished this, we will get another update. Everything is still going well.

Thanks for all of your continued support, James and the rest of the family.

update from doc at 12:25 central time

A surgeon's assistant came by and said that the surgery is going well. Her pancreas is now out. (Goodbye evil pancreas). The head surgeon is supposed to come by around 1:30 central time to talk to us more about how everything is going.

James

February 8, 2007

We all got up and headed to the hospital at 5:30AM. We walked there since we are only 2 blocks away. It was snowing and cold. Nicole was very quiet and as a mom, I was very worried about her. She had a rough morning, she cried alot and was very scared. In turn, I cried alot and tried to compose myself for her. She finally got her IV in and all the doctors came in and talked to her. These doctors here are the most endearing ones we have ever met. All very positive and compassionate. After talking with Dr. Southerland, they gave her some medicine thru her IV to relax her and start her on her way to sleeping. Then they wheeled her off. Very hard moment for all of us. That was 7:25AM. We won't here anything for at least 4 hours. I will update this as soon as we know something.

Hospital/Hotel Info!

I did find out the hotel information but do not know my room number yet, but do know the unit that you can call to get to my room. james will post the actual room number when we have it.

University of Minnesota Medical Center, Fairview University Campus
420 Delaware St. S. E.
Minneapolis, MN 55455
613-273-3000
We will be in Unit 6B-transplant unit

Radisson University Hotel
615 Washington Ave S.E.
Minneapolis, MN 55414
612-379-8888
Room 862

Well, we made it to Minneapolis! Our flights were super rocky! wow!! mom and I held hands almost through the entire first flight! they didn't serve drinks or anything due to the turbulence. So since our first flight was late we had 15 minutes when we finally got off the plane to make it to our next one! so we ran! luckily we finally got to the gate to find out the plane was leaving 3o minutes late due to lack of crew! so we did get some mcdonalds and ate at the gate in between flights.

we finally got on the last flight and mom and I got to sit together but James didn't! :( Weird enough, we sat next to this guy that is a drug rep for a diabetes drug called Symlin. It is new and is used along with insulin to allow your body to not fluctuate between the high and lows. So we were talking to him about that and he was telling me how his co worker the next row behind us was type 1 diabetic. He also knew the endocrinologist in Indy we are going to see in March! oh, they were from Peoria, Il. so about halfway through the flight, the two guys switched and I got to talk to the guy with the Type 1 diabetes. he was super helpful and showed me his insulin pen and went over all the important things to know when you first start out! He actually found out when he was 21 that he was diabetic when he was in the marines, so he wasn't born with it or anything and he's had it for about 5-6 years.

So, we got in last night and ordered pizza and crashed right after! ha! we ate really healthy, Aerodyn! i'm doing great on the diet! Go team! ha! So, we got up this morning and went to see the doctor. We did a bunch of labs, which of course, they couldn't get on the first try. We talked to the surgeon and he answered a lot of questions. I was pretty close to losing it while talking about it but managed to not cry. I found out that I'll have the NG Tube (goes down your nose and into your stomach), the catheter, central Line in my neck, and this tube that goes inside the length of your incision that releases an anesthetic and antibiotics to help it heal correctly. So, lots and lots of tubes! We were talking to him about everything and then he told the resident that maybe we should do a pick line and I freaked out! I don't want to be awake and feel that stuff! he did say we'd just do the central line. the good news is that I won't have anything in until I'm put under for the surgery. I was relieved to hear that. He said i'll have the catheter and NG tube in for the first few days until I can get up and moving and then they'll come out.

The average person stays about 2 weeks and I'll have to stay up here a few days after being released from the hospital to make sure I am doing ok. I'm okay with that as long as I am out of the hospital without any kind of tubes. I have never had a central line so i'm kind of nervous about that in my neck! They'll also be giving me IV nutrients since I won't be able to eat. Oh, i also found out TODAY that I can't eat anything tomorrow! I kind of had a boring breakfast and wasn't very hungry today and now I won't be able to eat all kinds of goodies before the surgery! I did have applebees molten chocolate cake tonight, so I did have some goodies!!

I am trying to think what else they told me.... he said that I'll be on insulin for about 6-8 weeks because that is how long it takes the islet cells to start working in the liver. then they'll wean me off to see how I do on my own and how severe the diabetes will be. he did say that some people do have pain afterwards but it's not very common and I'm trying to think how. He said it'll take a few weeks before the entire pain is gone but mom and I were thinking maybe it's that ghost pain that you hear about when people get amputations and organs removed. I don't know. I kind of freaked out about that since this is supposed to fix everything and I don't want to be on any narcotics. I don't care if i would be on less. i don't want to be on it at all!!! so i'm going to not focus on that and just go with that it's all going to be gone!!! He also said to not be surprised if the surgery lasts until 8-9pm at night. some people even go to 11pm! jeesh! he said it doesn't mean that anything is wrong, sometimes it takes time to get the cells. I guess they have to give the pancreas enzymes to dissolve it! so very weird!

anyways, i've written forever I know! Dad, Rita, and Rob get in tomorrow! we spent the afternoon at Mall of America and will probably go back tomorrow to the aquarium and james needs to exchange a shirt. they have some cool stores here! there is a place called Jimmy Z's that has the cutest stuff. Shorts are everywhere even though there is snow on the ground! i hate that! i want sweaters still! not tank tops and flip flops!!

oh, I had to go back and do another round of labs after two hours for a test. I drink boost and then they do labs to see how my body handles the protein and such and they will do it everty three months for the first year and then annually and it should be able to give better ideas on what is happening afterwards before I'd even be able to tell! well, mom and I walked over and did that while james went to get the car and we're standing at the stoplight and hear this annoying car alarm. Mom goes, that would be funny if it was james. Well, we get done and are waiting forever for james and thinking jeesh, we already did the labs and talked to people, it's taking forever. so i call him and find out that he has locked the keys in the car while the car is running!! he had to call someone to help and then apparently this stupid rental car..everytime you unlock the door, the car alarm goes off! it did it again at the mall of america and you just have to wait until it stops! so annoying. so that was our funny story today!

alright, I'm officially done! Next time we post, it'll be james from the hospital!! Thanks for the thoughts and prayers. I definitely have started to freak out now that I'm up here and starting the whole process so I appreciate all of the prayers and sweet emails. It helps a lot to stay focused on the outcome instead of the present problems.

Love to all- Nicole

So, nothing can go smoothly for nicole. We were on our way to the airport and found out that our flight was cancelled. So I quickly called AAA to see if it was even a possibility to get out tonight since United was saying we couldn't fly until tomorrow. Well, i found a flight with Northwest flying out at 6:41 so we booked it! it was $600 per person for a one way flight!!! UGH! so, we were leaving our house at 5:40 to try to make it to the airport and get on a plane in an hour! luckily we made it! Now, we are sitting at the terminal, when our flight should have left 20 minutes ago because a part of the plane is leaking all over a seat. We are supposed to land in detroit at 8:05 and take a connecting flight at 8:55 to land in minneapolis at 9:40. so we're already 20 minutes late and haven't even boarded yet. they said we could make it hopefully but if not, there is a 10:30 flight so hopefully we'll be there before tomorrow morning!!! So we have our thousands of suitcases and now waiting to head out of Indiana! We'll keep you posted on what happens!!

So, it's my last day of work today! I went out with everyone in the office and went to Hirosaki, the japanese steakhouse, in avon. It was really good!! Thanks guys for getting my mind off the surgery!

I have pretty much packed all that I need to! I was watching the super bowl and packing last night! I have so many sweats, sweatshirts, and tank tops!! I want to make sure that I have enough clothes for the whole trip! I think I worked our washer and dryer to its limits this weekend! I have a few outfits for this week when we go to Mall of America and stuff, but other than that, I'll be living in sweats and sweatshirts. That's how I like it! I really hope I can wear normal clothes and not the annoying hospital gowns.

So, it's definitely starting to get close and the nervousness and fear is definitely incrasing. I think once I get up there and step into the transplant clinic that I'm really going to freak out. I got really stressed last night trying to pack and not forget anything. It's just hard to plan for three weeks. I really want to get out around 8 days and be able to fly home with James.

Oh, I forgot to add that it was so nice to see everyone on saturday night for Lori's Birthday. I was hoping to be able to see all of you and spend time with you before I left! I am going to miss you all terribly while I'm gone!! I was joking on saturday that i'm going to wheel myself to people's houses when i get back from being so bored!!

Alright, I better get back to work. Oh, Kelly-thanks for the 100's of DVD's that you are letting me take with me! that will be so helpful in the hospital!

SURGERY DATE CHANGE

Hi all!! I have some bad news. Last friday night, I got a phone call informing me that my surgery had been rescheduled until February 8th. I will now be leaving on Feb. 5th. Unfortunately, the guy and I had to switch appts due to him needing the surgery quite quickly. I am sorry for all the inconvenience it has caused anyone. I'll keep you all updated whenever I have anymore information!

Love,

Nicole

OK, I emailed Dr. Sutherland's assistant this week because I hadn't received any paperwork about the surgery. She emailed me today and told me I should have been contacted by another woman to schedule my endoscopy on Wednesday. I wasn't! So does this mean I don't have to have it, I hope?! I don't want to be under anesthesia on Wednesday and be in the hospital that day too. So, I'll be in the hospital wed. at 7:45 with Dr. Sutherland for all the pre-testing and stuff, but possibly not an endoscopy. Then on Friday, I'll be admitted bright and early at 5:30am. I'm sure surgery will be at like 6:30 or something. They usually prep you for an hour or two. I'll be in surgery for 12 hours and she said that Dr. Sutherland will come out and talk to the family when they are "dissecting" my pancreas to get the cells. She said procedure, I say dissect. Anyways, that's the latest on everything.

FLIGHTS

Ok, Mom, James, and I are flying out on United at 6:50pm. We will be at Chicago Midway from 7:12-8:00p and finally land in Minneapolis at 9:32p. We are staying at the Radisson Inn right across from the U of Minneapolis Hospital where I will be staying. At least I can enjoy a comfy bed for a couple of nights! I've listed the addresses below for you. I don't know the hospital room number yet, but will add it as soon as I know!

Radisson University Hotel
615 Washington Ave SE
Minneapolis, MN 55414
612-379-8888
Rm #?? Under Tara/Dave Lawrence

right now all i know is the transplant clinic information for the hospital. I'm not sure how you can get to the room information and such, but I'll update this when I get up there. for right now, here's what I have:

516 Delaware St. SE
Minneapolis, MN 55414
Dr. Sutherland's Office # 612-625-5609

I am going to be making my plane tickets today. Dad is coming up on Thursday night and then James, mom, and I will fly up on Tuesday night, hopefully. I emailed the doctor today because I haven't received any of my paperwork to know what the plan is for the days before the surgery. The only thing i know right now is that i have to be there on wed. at 7:45am for a lot of blood work and an endoscopy and stuff, so I'll be under anesthesia that day. She said I'll probably have to fast and stuff before, but will someone let me know for sure?! Not sure if I'm ready for all of this. I had a rough Christmas thanks to the pain, but I'm not sure if I'm ready to be in more pain to get better. Quite scared of that.