My TP/AIT and Recovery

Aug. 4, 2011

A little over two months post TP/AIT and my scar is healing. The surgery and transplant was by far one of the scariest things I ever decide to do and going through with it was just as hard. Luckily I had great doctors and was able to go into it with a good attitude with great support from family and friends.

May 19, 2011, I (Julie Bernal) underwent a total pancreatectomy with an auto-islet transplant at the University of Minnesota Medical Center of Fairview. The surgery and transplant involved evicting my entire pancreas, spleen, appendix, duodenum with pancreatic bile ducts and part of my intestines. Then a new opening for the liver bile duct had to be created, the islet cells had to be harvested and transplanted into the liver and finally a GJ-tube inserted into my stomach and intestines. Dr. Pruett, whom is head of the transplant center at the University of Minnesota, performed my surgery. I have to say that I was VERY impressed with him and the whole staff.

I spent a total of 12 days at the University of Minnesota Medical Center of Fairview hospital.

Day of Surgery and Transplant

I started with getting a temporary pacemaker put in to help keep my heart rate above 60. Now most that have this surgery don’t need the pacemaker but since my resting heart rate runs low – around 40 due to a heart ablation – my doctors thought it would be best to have one. I had a wire with a box coming out of my neck. Getting the pacemaker put in was pretty painless. I was then taken into surgery. I spent about 14 hours on the table. I remember waking up to about five people holding me down as I was trying to throw up. I was sitting straight up at least six inches off of the bed. Thankfully they were able to keep me from vomiting and then held me down. The pain was like no other pain I’ve ever felt. From 1-10, it felt like a 15. Now I’m allergic to many pain medications so my options were limited. I was a bit worried that I might have a bad reaction. Well, I did. The pain medication was making me feel like I was crawling out of my skin and when I was given more of it; it just increased the pain and nausea. I remember it was hard to talk. I could only say a few words at a time. Many that have the surgery don’t remember much from the first few days. I remember everything, even down to the nurses’ names. But I guess it is because narcotics work differently with some. I never felt drugged up or sleepy from the medications. The first few hours I thought, “What did I do?” But then later I thought, “The pain will get better and if I can make it through the night, I can make it through anything. And if I do, I will do it with a smile on my face.” And so I did. Though when I first woke up it was very hard for me, I did notice that the brick feeling, the tightness and sharp pain where my pancreas once was, was gone. I knew that the surgery had already made a difference.

Recovery Day One

I woke up in the ICU early in the morning with a pain level of 3-5. What a relief, the new pain medication was working. Though my belly was swollen and swore, my pain was controlled and I had an amazing nurse by my side. I was adjusted in my bed throughout the day from my back, to my side, to my other side. I needed two people to help move me. Lying on my side was painful and took around eight pillows to hold me up. Plus it didn’t help that I had an IV on one side of my neck and a pacemaker on the other side. The first time they moved me I remember coughing what felt like a bit of liquid in my lungs. They said, “Good job, good girl!” They wanted me to sit in a chair. It took a while to gather all my tubes and cords – I had a pacemaker, an IV in my neck, wrist, arm and hand, a GJ feeding tube, drainage tube, catheter, insulin drip, IV fluids, pain pump, heart and oxygen monitor on my finger, blood pressure monitor on my arm and leg pumps. I was helped up by two people and sat in a chair for about five minutes as they changed my sheets. Sure seemed like a lot of work just to have to gather everything up again. But it did feel good to get off of my back for a bit. I then had to do breathing exercises and arm and leg physical therapy. Every hour I would get my finger pricked to check my blood sugar levels. I also got my first sponge bath. I did pretty well for the first 24 hours. It sure did feel like a busy day.

Recovery Day Two

I woke up early in the morning and did some of my leg and arm exercises in bed. Fell back to sleep with my neck a bit slanted. I woke up with a tightness in my chest. It felt like I had plastic wrap in my chest and my heart was beating weird. I was worried that the pacemaker came out and had poked a hole or something. I was dizzy and hot. I had a fever. I had a chest x-ray and an echo done to look at my heart. They did see an arrhythmia but they said it was not anything to be worried about. Three hours later my fever went down and my heart felt better. I sat in a chair for about 10 minutes and later in the day, went for a pretty long walk around the hall. That night I was doing well enough that they moved to another floor – a step down from the ICU.

Recovery Day Three-Five

Day three I started to get some pain in my left shoulder, back and rib. My left shoulder hurt more than my incision. The doctor told me that they had to stretch my ribs during surgery since my body was so small and thin. So it was normal to be having that kind of pain. That night I went for two walks and then my chest pain returned. Around 1 a.m. I had my pacemaker removed. By day four I started to drink water. I was up to three walks a day. I was told that I was a superstar patient.

By day five I was moved to the transplant floor. I started drinking juice. I was taken off the pain pump and had my bowels woken up.

Recovery Day 4-12

Day six I tried to eat solids. Bad idea. Tried french toast. Two bites and I vomited. I was getting 24 hour feedings through my GJ tube so I was getting all the nutrition I needed from that. The doctors encouraged me to give my insides more time to heal. It was nice having my husband, mom and dad there to visit me and help out. And my mom did a great job of keeping everyone updated on my progress.

Day 7-12 it was up and down. Cramps, bloating, digestive issues and nausea. The doctors and nurses took good care of me and helped me get through it. I was taken off the insulin drip and was given long acting insulin in the morning and fast acting insulin throughout the day. By day 10 I was eating some crackers and a few bites of rice. By day 12 I was up to five walks a day. I was discharged from the hospital. My parents and husband were there to pick me up. My dad and husband both had pretty bad colds. So they wore masks and I did too just to be safe.

Recovery week 3-4

My husband and I stayed at an apartment close to the hospital. I spent a lot of time resting. There were many medications that I had to take throughout the day.

Two days after discharge we mixed up my long acting with fast acting insulin. I took 25 units of Novalog instead of Lantus. We were waiting at the clinic for a follow-up and my blood sugar dropped to 31. That was very scary but after we figured out that I took the wrong insulin, the nurse was able to act fast. It took six hours to get me stable and get my sugars back up. I ate around 10 packs of crackers and cookies, 10 little juice boxes, many glucose tablets and was on a drip. One second my sugar would jump up to 300 and in five minutes back down to 41. I was covered in sweat, everything was blurry and I was very weak. Well, we will never make that mistake again. By week three my blood sugar levels were dropping low and I felt pretty tired. I was able to lower my long acting insulin from 25 to 7 units and I was told that my islets were working great. That was great news. I started eating small meals. It was very hard to eat. It felt strange and it gave me nausea. Every bite felt like a challenge. I had to take pain medication, check my blood sugar levels and add food to my feeding tube bag every four hours. It made for restless nights and I really relied heavily on my husband to take care of me. I don’t think he got much sleep. I had to also make sure to clean my GJ tube everyday. It would leak some. The GJ tube was a bit swore but I was glad to have it. It helped me from feeling like I was starving and kept me from losing weight.

I started to have problems with nausea. I started vomiting after drinking water, eating and even after taking my medications. I was able to go into the clinic and get some IV pain medication and fluids. I finally figured out that the pain medication I was taking through my tube was just hitting me too hard. For me, it just built up and made me feel more toxic as the days went on. By week four I was switched to a pain pill that I was taking before the surgery. Within a day I felt so much better and finally stopped vomiting. I was able to eat and I felt well enough to go out and walk around town some. We had four days that we were able to leave the apartment to see the city or just go for short walks. Just a little over a month we were finally able to go home. And as a parting gift, I got my GJ tube removed.

Recovery 2 months

Eating has become better. I’m able to eat three small meals plus snacks and no longer have any nausea. My swelling went down. My blood sugar levels have been really good. Just taking 5 units of long acting insulin a day. I still check my blood sugar levels throughout the day. I have days I need to rest and I still get worn out if I do too much. But, I’m now off all pain medications. I feel pretty good. Still have days with some digestive issues. Still taking my pancreas enzymes when I eat (and will be for the rest of my life). But I feel like a new person. I feel hopeful and lucky. My pancreas pain so far is no more. Sure I’m still healing. My incision is still tender. But wow, what a long road it’s been…and very much worth it!

Thanks to the great doctors, nurses and team at University of Minnesota Medical Center of Fairview. They saved my life! Thanks to my family and friends who have been there for me through it all! And thanks to everyone who prayed for me. I feel blessed that I’ve been given a second chance at life – a chance to enjoy what my future may hold for me. I look at my incision and it reminds me that I’m a survivor. It reminds me of strength and where I’ve been. It reminds me that this life is very much worth living.

32 Responses to “My TP/AIT and Recovery”

  1. Alicia Says:
    August 4th, 2011 at 11:29 pm

    What an amazing journey! Thank you for letting us in on what you’re going through. I’m sure you give many people hope by sharing your experience.

    May every day be better than the last!

  2. Randi Says:
    August 5th, 2011 at 4:21 am

    You are truley an amazing women! I can’t even imagine how strong you have been. And as a nurse, I would have given anything to have a patient like you! I am so glad to hear you are doing great! If you need anything please, please, please let me know!

  3. juliebernal Says:
    August 6th, 2011 at 1:53 pm

    Thanks Randi and Alicia!

  4. Tara Cajacob Says:
    August 8th, 2011 at 1:43 pm

    Thanks so much for sharing your story, Julie!! Gosh, it is amazing how strong you are and how much you have been through. I trully hope that with my upcoming TP-AIT I am able to handle it with half as much grace and strength as you have!!!

  5. juliebernal Says:
    August 11th, 2011 at 1:56 pm

    Thanks Tara. I think you will do great with the surgery! You always seem to have a good outlook on things. The first month for me was hard but I just kept telling myself that it would get better, and sure enough it did. You will do great…and it’s right around the corner for you. Pretty soon you will have a new life.

  6. Amanda Says:
    August 10th, 2011 at 7:56 pm

    Wow, Inspirational!! I literally felt tears welling up as I read and tried to imagine how hard that must have been. I hope your recovery continues to improve!!!!!!! Best Wishes and Thank You.

  7. juliebernal Says:
    August 11th, 2011 at 2:00 pm

    Hi Amanda. Thanks for the comment. I just checked out your blog. Do you also suffer from pancreatitis? I would love to hear more about your story. Thanks for the support and kind words.

  8. Amanda Says:
    August 13th, 2011 at 2:06 am

    Yes, I have CP and SOD. I put a new tab on my blog at the top of the page with the story of how it all started, since I have had so many people ask. It is great to see someone with such a difficult situation have a positive attitude. I’m sure it isn’t always easy but you seem to share my point of view; can’t give up, gotta do something about it.

  9. juliebernal Says:
    August 14th, 2011 at 4:10 pm

    Thanks Amanda. Just reading your story reminds me of my days of ERCPs and dealing with SOD. I used to hate the not knowing of the good days and bad. I used to wake up every morning in fear. SOD is such a hard disease. But yes, we have to be positive. I remember when I first heard of the TP/AIT, another friend of mine had SOD and she was told she would need the surgery. That was a shocker to me. That’s when I started to research the surgery and I learned about good doctors just in case. Sure enough less than a year later my doctor told me the same thing. My pancreas needed to come out. I never thought living with SOD would be like this. I never thought I would get chronic pancreatitis either. What a nightmare. But I was just thankful that there was treatment. As hard as it’s been, I’m just glad that I’m alive and of the most part…pain free. I hope that you stay well and that you can remain in good spirits. It’s good to take some time to recover, never forget that. You are brave and strong and going through something big.

    Here is a link to Amanda’s blog and story,

  10. Cheryl Tarrant Says:
    August 16th, 2011 at 3:09 am

    Your strength and courage are inspiring and admirable. Your story is so powerful and moving. Thanks for sharing your experience. I am so glad you are feeling better!

  11. juliebernal Says:
    August 16th, 2011 at 3:38 am

    Thanks Cheryl :)

  12. Candie Says:
    August 16th, 2011 at 4:52 am

    Dear Mrs. Julie,

    Your story is much appreciated and you are an increadible and an inspiring woman. I pray for you and I am glad your recovery is going well. I hope that continues. I also want to Thank You for the encouragement and the information you posted. Just knowing there is a surgery that can help the most severe patients with SOD and Pancreatits is comforting even though it is rough process to go through.
    Thanks again, and God Bless You, Candie

  13. juliebernal Says:
    August 16th, 2011 at 5:18 pm

    Hi Candie. Thanks for the kind words.

  14. Anne Says:
    August 16th, 2011 at 5:39 pm

    Dear Sweet Julie;
    I just *had* to come and see your site.
    I also chronicled my daughters TP/AIT
    My own blog link is
    Just scroll down on the right, and you will see many entries about many things she has gone through- (Is *still* going through, due to the fact that her diseased pancreas had damn~near digested every organ in her body)… What it hadn’t digested, her body used what was left over for fuel to live. UM, and Dr. Sutherland basically saved her life!

    She too awoke from the surgery with a happy pain! No more pancreatitis pain, and we were all thrilled then

    While Miss Heidi has to send you the Terms of posting to our PAI Group, I am happy you posted the link to your site!

    It is good for us to read what others have gone through!

    I can’t believe you were out of the hospital so soon! That is astonishing!

    Please take a moment to maybe read about Casey’s surgery too?
    It begins here,

    If you click on the “next” at the bottom of each entry, it will go forward to my next posting… There are many comments, and further explanations at the bottom of each entry.
    If you have any problems please feel free to contact me @; or, you could join Multiply, (its free), and then you could leave your own comments for Casey too.

    She is facing another surgery, this one in town, (whew), it is not yet scheduled.

    Heal well, and keep on smiling! And no more mix ups of your insulin! Lucky, lucky you. (sarcastic of course).
    CaseyAnne only needed insulin for about 5 months, and with your quick recovery, I am guessing that your islet cells will be working just like hers!

    Best always.
    Love already!


  15. juliebernal Says:
    August 17th, 2011 at 6:18 am

    Hi Anne. Thanks for commenting and sharing your links. Wow, your daughter must have been in a lot of pain with all her organs going through all that. UM and Dr. Sutherland are amazing. When I talked with Dr. Sutherland, I remember thinking, “Wow, finally a doctor that can give me some answers to questions that I’ve had my whole life.” UM saved my life too. And it is so great to hear that she was able to get off insulin after 5 months. My doctors are thinking by next week I will be off of it as well. Many prayers to you and your daughter. I hope that her upcoming surgery goes well.

  16. Tina Says:
    August 16th, 2011 at 6:07 pm

    Your story is amazing! I had the same surgery as you. I am 32 years old and developed necrotizing pancreatitis in my 8th month of pregnancy and I spiralled downhill extremely fast and battled it for almost 4 years then had my surgery. I had mine in 2 parts, one 6/18/2007 and the other 1/18/2008. I also had mine at the University of Minnesota. During my first surgery they thought that the head of my pancreas looked like it could be salvaged and they opted to save it to prevent me from becoming a brittle diabetic, b/c the tail of my pancreas was horrible and didn’t yeild many islets. Well, 3 months after my surgery I developed pancreatitis in the remaining pancreas and I had to go through the whole thing again! Luckily they were able to get a good number of islets and I have now weaned completely off of the lantus insulin! It was a rough go for about a year, I ended up needing 2 additional surgeries, but now I am doing amazing and have my life back. I was pretty much bedridden before the surgeries, unable to eat or drink and on TPN and on IV pain/nausea meds at home. I was in bad shape! One thing I found out a year ago was the pancreatic enzymes you take can make a HUGE difference. During a hospital stay they substituted ZEN-PEP for the Viokase I was taking and suddenly I stopped vomitting and the nausea was almost non-existant! I had lost about 170 pounds *I was overweight beore*. I’ve now regained about 30 pounds and am at a very healthy weight. Long story short? It’s a long road and can be difficult at times, but it was SOOO worth it. This surgery saved my life! I am so glad that you are doing well!!
    Keep up the awesome work!!

  17. juliebernal Says:
    August 17th, 2011 at 6:31 am

    Hi Tina. Wow, necrotizing pancreatitis at 8 months pregnant? Yikes! It’s so good to hear that the transplant worked so well for you even with having a Whipple before hand. What additional surgeries did you end up needing? Colon, intestines or stomach surgery? Yes, Zenpep is amazing. I first tried Creon about five years ago when I lost 30 pounds. I was skin and bone. The Creon only made it worse for me. So years later my doctor put me on Zenpep. So far no problems and it really helps my digestion. I only lost about 7 pounds since the surgery and now my weight is staying steady. I can’t believe you lost 170 pounds. Wow, you must have felt very tired going through that. I always feel worn down when the weight falls off. But I’m so happy that you were able to gain back some weight and you sound like you are doing really well now. Like you said, a long road, yes. But so worth it! Cheers to you!

  18. Bruce Reitman Says:
    August 18th, 2011 at 5:27 pm

    Wow,I needed to read your great story. I have been fighting with Medicare to get the surgery.Been to Minnesota and Arizona.I am about ready to give up,so it was great to hear your story.Below I included a TV interview I had.

  19. juliebernal Says:
    August 19th, 2011 at 7:08 am

    Hi Bruce. Thanks for posting your interview. I remember watching it when you first posted it on Facebook. You have been such a fighter and we are all cheering you on. Hang in there and never give up!

  20. Zandy Davis Says:
    September 13th, 2012 at 6:05 am

    Hi Julie! My name is Zandy! I love in Georgia(seeking treatment in South Carolina at MUSC) and I have been diagnosed with SOD… I have had 3 ERCPs and a shincterotomy and shincteroplasty. They are telling me it is time to think about taking out my pancreas now, but I am only 19 and I am extremely afraid of such a big procedure. I never had pancreatitus before my first ERCP but now it seems to be a developing chronic condition. I think my greatest fear is that the surgery will not help my pain in the end… I could really use some advice. Mostly I just want to talk to someone who can help me understand… Its hard to weigh my options at this point, but the attacks are controlling my life and I dont know what else to do. Im trying to get back in college and start life, but as you probably know it is difficult to do much of anything with this disease. I never know when or where I will have an attack and its constant fear… Please get back to me! I would love to contact you and talk. On another note I am glad things worked wonderfully for you! This story is an inspiration of hope!!! Thank you for sharing:)

  21. juliebernal Says:
    September 15th, 2012 at 3:54 am

    Hi Zandy. I’m so sorry to hear that you are suffering. This disease is very hard and very painful as you know. But I would say MUSC is a great place. And I’ve know others that also had SOD that ended up getting their pancreases out, and the results have been amazing for many of us. It’s not a cure but it is a great treatment. Speaking for myself, I’ve been very pleased with my results and I’m very happy that I had it done. Every case is different and yes it is a hard surgery/recovery but I feel it is well worth it. I would be glad to talk with you. I will email you and we can talk more and i would be glad to answer any questions or even just talk and hear your story. Stay strong and don’t give up hope. You’ve got this and you will do great!

    – Julie B

  22. Lorin Ewing Says:
    February 21st, 2013 at 11:03 pm

    My mom had alot of the same things happen to her 10 years ago. She was at the same hospital. Thanks for sharing your story, it’s nice to know there others out there who have been through the same problems!

  23. juliebernal Says:
    February 28th, 2013 at 1:28 am

    Hi Lorin. Thanks for commenting. So sorry to hear that your mom has been suffering from this hard disease and issues. How is she doing now? I know it’s very hard on the family to watch a loved one suffer. If you would like, you can share your story of what your mom have been through and also how you have been coping. I would love to offer he best support I can. My thoughts are with you and your mom and whole family. – Julie B.

  24. Jim Johnsob Says:
    June 14th, 2013 at 12:32 am

    I am fighting with my insurer to get my wife this needed procedure. Could you please email me at so we can talk? I have so many questions you may be able to help with.
    Thank you!!

  25. juliebernal Says:
    June 18th, 2013 at 10:28 pm

    Hi Jim. So sorry t hear of your wife’s suffering and having to fight to try to get approved. I just sent you an email. Looking forward to hearing from you. Thoughts to you both. – Julie B.

  26. John E Says:
    November 8th, 2013 at 8:50 pm

    had same surgery on may 17,2010, a few issues but got thru them. dr. beilman did my surgery. the doctors in n.j. didn’t know what to do except put me on more pain meds. my transplant for diabetes didn’t work, but I feel really good, also lucky to be alive. it was nice to read your story. stay well. john e.

  27. Reon Says:
    April 12th, 2014 at 3:11 pm

    Hi my name is Reon
    I had a total pancreas and spleen removal with ilets transplant 6weeks ago,spend 10 days in hospital and a nother month close to the hospital.It has been 6 weeks and i am totally free of the pancreas pian,my wound is extremely tender and hars but no pain to speak of,i am on 10 units insulin a day for now and have a second one for when and if my bloodsugar spikes.I now strted having bouts of diareer and a lot of rumbling,cramps in my abdoment wich is expecialy sever in the early mornings,i just want to ask if there is anyone who has or is having the same issues ?
    If you read my website it will tell you more about me,nothing to do with the operation but never the les interesting.
    Thank you for sharing your incredable story.
    Kind regards

  28. Stacy Says:
    December 20th, 2015 at 3:58 pm

    HI my name is Stacy. My story is starts out out with SOD attack December of 2013. At that time, we had no clue what was going on. It was not until January I met with my first GI that diagnosed me and referred me to U of M for my initial apt. After multiple pancreatic attacks, ERCP procedures, stent placements, which I just had two placed in my pancreas this Thanksgiving break I have had the tests that officially diagnosed me with idopathic chronic pancreatitis. My first jpeg was placed but had to be pulled due to site reaction. I now to the transplant team . Julie since you have gone through this I have so many questions would it be okay I ask you?

  29. juliebernal Says:
    December 21st, 2015 at 12:07 am

    Hi Stacy. Thanks for reaching out to me. I am so sorry to hear that you having been suffering. Sounds like you are being very proactive with seeing the drs and seeking treatment options. Please know you are not alone and there are many others just like yourself who are looking at a path of a transplant and many of us who have had it done. It is a hard surgery and long recovery. Not something to take lightly, but it can also offer hope with the correct kind of cases – we are all different. I would love to help answers questions the best I can. But as I am only one person, I find that support groups tend to be one of the greatest ways to ask questions and to get honest, detailed answers involving each step of the disease and treatment, recovery and so on. Here is a list of just a few groups (I am sure there are many others out there too) you may find to be helpful. I hope you are doing ok and hope I was able to help some. Thoughts are with you.

  30. Thom Moriarty Says:
    March 21st, 2016 at 1:54 pm


    Our 13-year old grandson had his TP/AIT surgery on March 17th 2016 and he is now in recovery. Still in ICU, hoping to get moved to the transplant floor today or tomorrow. This surgery saved his life. To complicate matters, he is autistic and is having a very tough time right now but his Mom and our daughter are there with him. His pancreas was in very bad shape and this most recent attack would in all likelihood ended in his death had it not been for the surgery. I talked to his surgeon and confirmed this. He had been in the hospital for 37 days before the surgery. Your story is inspiring and I will send the link to my daughter so she can see that there is a light at the end of the tunnel. We know that the recovery process will be long and full of difficulties but we are grateful that our grandson is still here with us. Chonic pancreatitis is a terrible and extremely debilitating disease that not many people are really aware of. Glad your surgery went well and thanks for sharing your story.

  31. LisaMarie Says:
    November 18th, 2016 at 11:39 pm

    Hi Julie,
    It’s November, 2016 and I was wondering how you are doing five years later. I had my TPIAT April 4, 2016 at MUSC and am doing well. Yes, the first few months were an adventure, but now I am settling down with some issues that are not extreme as the Pancreatitis, but not pleasant either. Nausea and fatigue are the worse right now. How about you? I hope they will pass, as the past couple months have been dreamy! I was four years with pancreatitis and in the middle of that I had a Whipple with the hope of fixing me….didn’t work, so TPIAT was next. I was out of the hospital in seven days…another star patient!
    So, I was just wondering how you are today and what issues you’ve encountered… hopefully none and you are enjoying a pain free life.. Thanks for your time, Lisa

  32. Dawn Says:
    April 16th, 2017 at 5:47 am

    Julie, I can` t thank you enough for posting your story. I am suffering from Chronic Pancreatitis due to insufficiency. The doctors do not know the cause. I have recently been blessed with a wonder doctor at Brigham Womens Hospital in Boston, MA. My celiac plexus block has been working on and off. Life is miserable and this disease is effecting and possibly ending my career as a police officer early. My husband and my family are very afraid for me. The surgery you had; has been mentioned to me by my doctor and it made scared the heck out of me and made me fearful of the possible outcome. Your story has given me alot of hope for tomorrow and my future days to come. I feel alot better actually knowing you had a great and successful outcome. I wish you many blessings in your life. Today you blessed mine. Take care.

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