An Amazing Transplant Indeed – Auto Islet Transplant
Posted by juliebernal | Filed under Diabetes/Blood Sugar, Research/Support/Hope, Total Pancreatectomy & Auto-Islet Cell Transplant (TP/AIT)
Sept. 9, 2011
Auto Islet Transplant! I’m living proof that you can live without your pancreas and still have a chance of not being a brittle diabetic. This transplant can really work! I’m about three months and a few weeks post my transplant and I’m proud to say that I’m off insulin. Three days of being insulin free! It is truly amazing.
Not all have such great luck while others do. I just feel very lucky right now. I think when I go into something so big (like surgery after surgery) I tend to have doubts and question my luck. When it’s one thing after another, I kind of get used to the disappointment and illness that comes along with it. I’ve learned to adjust. I don’t think I really took time to feel sorry for myself, I just got used to thinking that things don’t always go the way I think they will. That is life. But I’ve always been a positive person. I’ve been a fighter. I’ve been filled with hope. But through it all, I’ve been very realistic with my illness, while other days it still just seems like a dream or like I’m watching some one’s life. I know who I am and this illness is not who I am. Yes, it has changed me – changed me greatly. But I still remember who I was before being sick. I still long to be the same person I was. I can say, a part of me really thought that I would have a hard time with being diabetic. It’s weird the things we fear. I was facing death, pain that kept me from being able to walk some days, and I could hardly keep water down. I feared having to check my blood sugars and giving myself shots? Yes, I really feared it. It was going to be new. I know most people about to have the TP/AIT say the same thing. They fear becoming diabetic. For me, after the surgery I realised that pricking my finger throughout the day wasn’t so bad. Having blood sugars drop low or having sugars jump around isn’t much fun at all. But really it isn’t anything compared to the pain I had with pancreatitis. The life I had right before my surgery was no way to live. It was trying to survive. I had fear and I faced it. Now I’m off insulin. It doesn’t always go the way you think it will. Not everyone gets the perfect outcome, but when something so amazing happens (finally) it is very much worth celebrating. Let’s hope that I continue to stay on this path and that my blood sugar levels remain normal. All I can say is, what an amazing transplant indeed!
September 12th, 2011 at 5:11 pm
HELLOW JULIE , I JUST READ YOUR LATEST BLOG , I AM HAPPY FOR YOU AND I HOPE THAT ITS GETTING BETTER ALL OF THE TIME. I HAVE BEEN RESEARCHING SOD FOR FIFTHTEEN YEARS NOW AND YOUR SITE IS THE BEST I HAVE EVER SEEN. AS I TOLD YOU DAVACET HELPED WITH MY SPHINCTER OF ODDI DYSFUNTION FOR YEARS BUT NOW ITS GONE. I WAS GIVEN VICODIN BUT AFTER A FEW DAYS OF THAT THE SPHINCTER AND BILE GOT WORSE. NOW WHAT I AM FINDING IF I TAKE A TYLENOL AT 9:00 AM WITH SOME CRACKERS AND AGAIN AT 11:00AM WITH A PROTON PUMP INHIBITOR AND ANOTHER TYLENOL IN THE AFTERNOON THE SPHINCTER IS MORE RELAXED AND FUNCTIONS SOME WHAT BETTER. AND THEN AT 5:00 PM I TAKE SOME VICODINE WITH MY LOW FAT DINNER. I HAVE BEEN DOING THIS NOW FOR EIGHT DAYS, ITS LIKE I’M MEETING THE DEVIL AT THE GATE, AND FOR ME ANYWHERE IS A BETTER PLACE TO BE. KEEP UP THE GOOD WORK JULIE , YOUR THE BEST BOB FERNANDES AND FAMILY P.S. KEEP US INFORMED ON YOUR PROGRESS
September 12th, 2011 at 5:30 pm
JULIE ITS BOB AGAIN , COULD YOU LIST MY LATEST COMMENT ON YOUR MAIN COMMENT LIST . MAYBEY IT COULD HELP SOME PEOPLE WITH SOME RELIEF OF SPHINCTER OF ODDI DYSFUNCTION……THANK YOU BOB
September 13th, 2011 at 7:33 am
Thanks Bob! And thank you for sharing your story. SOD is such a hard thing to manage and treat. The more we can share about our own experience, the more awareness we can bring to others. Sphincter of Oddi dysfunction is tricky because so many narcotics can trigger an attack and many people with SOD also have many allergies and have limited options. And like you said, many don’t work. And Tylenol just won’t cut it for SOD pain. Everything seems to be a balancing act and as you say – timing seems to be key. Thanks for the encouraging words.
September 26th, 2011 at 8:28 pm
Hi Julie:
I hope you are continuing to be better each day, you are truely a brave person. The past few days have been a slight improvement for me. I see a nutritionist now and we are trying to stay on top of my nutrition issues, due to having SOD. Some of my newer developments are extream gas buildup and all over itching at night. It is very anoying and frusrating. My diaphragm feels like it it is in my chest. At anyrate, did you experience this? I am scheduled to have my third ERCP on October 6th, keep your fingers crossed.
Thank you for your help.
Kathy D.
September 27th, 2011 at 3:14 am
Hi Kathy.
I’m sorry you are having so many issues. I hope your ERCP next week goes well. Hopefully you will find some relief and answers from it. Yes, I had the itching too. It would be mostly wherever I had pain (abdomen, back and down my arms). I haven’t had the itching since my TP/AIT so I believe it had a lot to do with my pancreas and bile ducts. I used to get chills pretty bad too when I got the itching. Do you get chills? The bloating feeling and feeling it in your chest is pretty common with SOD and pancreas issues. I’m glad to hear you are seeing a nutritionist. My grandfather is nutritionist and has been giving me great guidance for some time now. His knowledge has really helped me a great deal. Like I said, I hope everything goes well for you with your ERCP. Stay strong! I will keep you in my thoughts.
Julie
September 27th, 2011 at 7:58 pm
Hi Julie:
Yes, I do get the chills as well, again this is strangely at night. The itching, now that you pointed it out is in ares of pain( my back, stomach & down my right arm. I am really trying to stay in good spirits even through some tough times. You are truely an inspiration of hope for me. Sometimes, it is very difficult to deal with newer developments. Thank God have a wonderful husband, family and friends that help support me along this journey. I know that these things that happen in our lives only make us stronger people, look at you for example.
Thank you again!
Kathy D.
September 28th, 2011 at 1:05 pm
Hi Kathy.
I used to get the chills and itching mostly at night as well. But then some days it would last for half a day. That’s no fun. Do your eyes ever burn or hurt too? I always felt that my skin looked a bit more yellow or a little darker when I got itchy. My doctors never really felt I looked jaundice, but my family would notice it since I was normally pretty pale. So anytime I would get itchy and got chills, I would try to sit outside in the sun for a little bit to soak up some Vitamin D. It’s like when newborns are born jaundice, sun helps pull the Bilirubin out of the skin. But itching is pretty common when there is a blockage of the bile ducts or something that keeps the bile from flowing properly. It can mean that it’s accumulating into the skin. You can also get itching from pancreas and liver diseases. And I know I’m not a doctor but for me getting a little sun seemed to help a lot.
I know that much of my strength came from the support of my family as well. I’m so thankful that you have such great people around you to help you get through this. Support is everything! Living with a disease like this is hard and yes it does make us stronger. Thanks for the kind words. I hope that you are able to find some relief soon.
Julie
September 28th, 2011 at 6:33 pm
Hi Julie,
My eyes do not burn and my skin is not yellow. At one time my skin did have a yellow tint to it, but not lately. Thank you for the advice, I will try it. Have a nice night!
Thanks,
Kathy
October 10th, 2011 at 9:53 pm
Hi Julie,
I had my third ERCP last Thursday. They found a narrowing in the Pancreas Sphincter this time and did a sphinterotomy with the stent placement. I did get slight pancreatitis from the procedure. I am not sure if this will fix my problem. The doctor commented to my husband that he did not feel that this was the cause of my pain since the majority of my pain is in my right side. I feel completely frustrated yet again, but I continue to try to keep the faith!
Thanks for listening and your support,
Kathy
October 12th, 2011 at 4:37 pm
Hi Kathy. How’s your pain doing now? They found the same problem with me with my second ERCP. It can cause right side pain, but other things can also cause it as well like a problem with the pancreas. It sounds like your doctor may be worried about that. But give it some time to see what happens. My pancreatic sphinterotomy helped me for about 8 months. I still had some pain but it was less often than before the sphinterotomy. There is a chance that it will help and there is a chance that the pain could be caused by something else. But for now you will just have to wait and see what happens (I know that part is not easy). And if you get pain again, then you will know that it is likely something else. Then you can take the next step of tests. But for now, just try to focus on right now. See if it helps you. Only time can tell. There is hope and you have to take one step at a time. Praying for you. Keep me posted.
October 13th, 2011 at 11:16 pm
Hi Julie:
So far, the pain is manageable and I am less bloated. I did faint over the weekend from pain but I have been improving since then. It is a waiting game for now. Thank you for the prayers, they are truely appreciated. I will certainly keep you posted.
Thanks,
Kathy
October 16th, 2011 at 6:46 pm
Hi Julie,
I suffer from Chronic Pancreas for over 10 years plus and had two ERCP’s already with no success. I am schedule to have the Total Pancreatectomy & Islet Auto-Transplant Surgery this October 31st at the University of Minnesota Fairview Hospital.
October 17th, 2011 at 4:01 pm
Hi Betty.
I’m so sorry to hear that you have been suffering with CP for so long. Hopefully the TP/AIT will help you. The University of Minnesota Fairview has a great team. I just love them there. I would love to hear more of your story. And if you have any questions, please feel free to ask. I will keep you in my prayers on the 31st for a smooth surgery. Thoughts to you!
October 26th, 2011 at 8:11 pm
Well it’s Wednesday and time is getting close, just got off the phone with the Hospital registration department over at the U of M. My surgery is at 7AM on Monday the 31st.
October 27th, 2011 at 11:37 pm
I will be praying for you. Many good thoughts for a successful surgery and fast recovery.
November 10th, 2011 at 1:30 pm
Hi Julie:
I hope all is well with you. As for me, I am continueing to have intermitted pain, bloating, itching and I am lethargic from time to time. What test did they do on you to tell
that your pancreas was bad?
Thank you for your guidance,
Kathy D.
November 14th, 2011 at 1:54 am
Hello,
I am hoping that someone can help us. Our 25 year old daughter Emily had her TP AIT 3 years ago and a roux-en-y done 2 years ago, both at U of MN. She had the roux-en-y done to help stop her severe bile reflux vomiting. She has remained in severe pain since and is getting worse. We are so worried and trying desperately for answers or suggestions. Anybody who can offer something, anything, would be so appreciated. We haven’t had any luck finding anyone with these two surgeries. We would think there would be others, Dr. Sutherland did both. Thank you! Peter and Susie
November 15th, 2011 at 3:57 pm
Hi Kathy D
Sorry you are having a hard time. I had ERCPs (3 of them), EUS and MRCP. The EUS showed a narrow duct within the pancreas, some spots and the branches where 3 times normal size. My MRCP showed delayed pancreatic function. I had those done at U of M. But my ERCPs I had done at MUSC. My first EUS a year prior came back normal. So sometimes the tests don’t always show something until it’s progressed. Blood work and a CT scan also proved inflammation. The pancreas is pretty tricky. Sometimes all the test come back fine and then they take out the pancreas and discover that it was indeed sick. Don’t give up.
November 15th, 2011 at 4:11 pm
Hi Susie.
I’m so sorry to hear that Emily is having a hard time. I believe I’ve read about others that have had those two surgeries. Are you on Facebook? There are some closed groups that may be worth checking out. I will post your comment on my Facebook page too to see if anyone has suggestions. Has she tried Reglan? I’ve heard that sometimes that can help but everyone is different.
November 17th, 2011 at 12:07 am
Hi Julie,
I am so discouraged, yesterday was a good day and today we sart all over with the pain, itching, bloating and I am lethargic. It really seems frustrating and I am fearfull that my pancreas is starting to fail me. The only good thing is that I have not gotten sick. My daughter asked me today how did I get so tan? I haven’t been out enough to get a tan. (Not a good sign!!!)
Anyway, I have a call into the doctor again. Thanks for listening and as always I wish you well always.
Thanks,
Kathy
November 17th, 2011 at 2:28 am
Hi Kathy.
Oh man, sounds like you could be jaundice. Hopefully the doctor will call you back soon. I wonder what your blood levels are at right now. Try to soak up some of that Vitamin K sunlight. And don’t be afraid to go to the ER if you feel bad. Always better to be safe than sorry. Who is your doctor who did your ERCP? You seeing an out of state doctor? You planning on having an EUS? I just worry about you with the fact that you said your duct was narrow. You’re symptoms sound a lot like the ones I used to get. But I know it doesn’t mean that we have the same thing but I know how you feel. I’m so sorry you are going through this. It’s so scary when you don’t know what’s going on. Do you have any chest pain too, how is your heart rate and blood pressure? Are you able to keep your pain controlled most of the time? Uncontrolled pain can actually cause all kinds of problems so don’t be afraid to get help when you need it. I’ll be praying for you. Keep me posted. Many hugs!
Julie
February 16th, 2012 at 3:47 am
Came across your blog after reading, reading, then reading some more about this dreaded thing called chronic pancreatitus. My wonderful wife Kedith is an amazing woman that has suffered for almost 2 years with the normal progression of this disease. The first ERCP with a stent gave us 7 wonderful months of a pain free life. When it came back it crushed our dreams of beating what was labeled acute and progressed to 5 more stents, 2 celiac (sp) blocks and every experimental procedure known to the wonderful group of Drs at Indiana University. Nothing has worked and we found ourselves hospitalized 19 times over the last 7 months with Potassium levels and pain being our biggest challenge.
We all (including the great group of Drs at IU) are crushed and stunned at the progression of the disease. We take 3.5 mls of methadone every 8 hrs with 10 to 20 mls of dilaudid as a breakthrough to help the pain. By the grace of God we are now living with a pain level around a 4 or 5 the majority of time. Sleep is the norm and mag of citrate is helping with her bowel movements. My point is that the high rate of narcotics might seem like alot but it has actually worked.
I am typing at a hotel in Minnesota after going through our week of consultation. Fortunately the MRCP and the blood draws were about all that they needed as the last scheduled test was an EUS that would have guaranteed a reactive bout of pancreatitus. Dr Freeman stepped in and D/Cd the procedure, we met with Dr Dunn and Louise (our consultant) and now are being presented to the “board” that will decide if we are candidates for the auto islet transfer procedure. We are lucky to not be diabetic going into the procedure and now are praying that we will be accepted. I told Kedith I am fairly positive that we will accepted but like many of you sufferers she is scared that for some reason she will not be. At this point she honestly would be happy to let a 1st year nursing student remove the dam thing.
The tears I cried were when I read that after only three months you didnt need insulin. I wish I could hug you from head to toe because I know what a beast this disease is and Im only the husband……..not the patient.
I will stop now as the tears have slowed and finish with a prayer that ALL of you one day find the peace of a pain free minute…………….or even the rest of your life.
May God guide all of us and tomorrow be a better day. Feel free to say hi personally or here Julie. Just hearing that your life has changed has dried my tears for now and for that…………….Thank You my dear. Continued success and any pointers about UofM would be helpful.
Tim
February 16th, 2012 at 9:27 am
Oh wow, Tim. Hello.
Okay, so now you made me tear up. Your words just brought me back to the memory of a year ago (almost to the day) and I am just so moved by your words and heart.
First I would like to say, I am so sorry that Kedith is suffering with this hard disease. And for you, having to watch your loved one suffer is just as hard. I remember watching my husband as I went through being so ill all the way to recovery. He never got sleep because he was always ready to take me to the hospital. He lived in fear everyday that it could be my last. He was even more fearful of the surgery than I was – and I was a mess the months leading up to it.
I think for me, once I got bedridden sick, it all happened so fast. Whenever I would relapse I would know that I had only 3 months to get it under control. That was it. I went to UofM a year ago for my consult just as you all are doing right now. I was so fearful of being rejected as well or being told no. I knew going there that without the surgery I would die. After the tests, Dr. Freeman told me the same. But still waiting for the word of approval from the group was a hard wait. For me, it only took a week or two and by week three I had a date set. They had it set for 2 months after my consult – but I had a bad feeling about the date or maybe felt I needed more time to get my stuff in order so I pushed it out another month. Your wife is going to go through a thousand emotions in the next few months. There are so many “what if” thoughts. You sound like an amazing husband, so I’m sure she will get through it just fine with you by her side.
It’s important to go into the surgery feeling good about it – both of you. My husband was a mess leading up to the surgery. For some reason he just thought that I would die and that my body was too sick to handle it. My body was in bad shape, with heart issues and I too had problems with Potassium along with so many things. It wasn’t until my husband met a post TP/AIT patient the day before my surgery, that he finally started to feel better about it. For me, that was a big step. Because I was more worried about him being okay as I went through the surgery. The day of, I felt that he was okay and that gave me a chance to feel better about it. I think many times, the patient worries more about family than themselves. I found myself writing letters and saying good byes in the most meaningful ways I could think of – when I was well enough I tried to make every moment matter. And even though I felt I would make it through the surgery, I still felt that I needed to make those months leading up to it important. And I pulled through with flying colors.
The first few days were a bit hard. Things happen that they don’t tell you about. You can get a fever, heart rate issues, breathing and all the normal stuff that can come with surgery. I had a few scary moments – but really it was all normal for part of recovery. The staff at UofM all were amazing. They were on top of everything within minutes and the doctor comes by each day for follow up. Best care I’ve ever received. And all the doctors there work together, so it’s hard to go wrong. I’ve heard great things about Dr. Dunn and have at least 3 friends who had their surgery with her.
So, as far as your wife’s well-being right now, how is she doing with eating and nutrition? Getting low Potassium levels with pancreatitis is very common. Could be from vomiting, diarrhea, lack of eating, inflammation in the body…so many reasons. But I used to get low levels even when I wasn’t vomiting or have watery stools. Dehydration is a common cause, and even when we drink plenty of water, it seems like the body still finds ways to dry us out. I used to drink Shaklee meal shakes. They are filled with vitamins and protein and are low fat. It’s a power so it can be mixed with water. About 4-5 months before my TP/AIT I was so malnourished, and the Shaklee shakes ended up saving me from going into kidney failure. My Potassium levels even got better once I started taking the drink daily (or at least the days I could keep fluids down). As far as the pain medications you listed, that sounds about right. Everyone is different. And there is no need to feel bad about needing it – the plan is in the near future she will be off all pain meds.
Plus controlling pain is important. I think my heart would be in a little better shape if I had controlled my pain 6 months sooner.
I came off daily pain meds by 2 months post – I want to say. But I still have some left for breakthrough pain. I haven’t taken any in a month and a half. And now I know any pain that I get is from being backed up – which seems to be the most common issue after the surgery. Pooping everyday is a must after having the TP/AIT. Now that I know this, I haven’t had to take any pain meds. As far as the insulin, yes off it at 3 months. Even after coming out of surgery, I didn’t need much. I think a big part of this has to do with the study drug and study they are doing right now. Everyone is different, but I’ve been very pleased with the results. Going into the surgery, my islets ran on the low side. So now at almost 9 months, my blood sugar levels tend to run low at times. I have to keep food with me at all times and eat extra anytime I go for a walk. But I’m just happy that I can eat again and I’m not bedridden anymore. I’m starting to think about my dreams again and making plans for my future. Hope for tomorrow…there is hope for Kedith. There is hope and soon you both will be on the other side of this…the side of recovery and a better life.
I hope you keep me filled in on any word from UofM and please let me know when her surgery will be. If you have any questions at all, I’d be glad to talk. Many blessings and prayers to you both.
Julie B.
February 28th, 2012 at 9:14 pm
I have just completed my 4 month from having my Total Pancreatectomy with Islet Auto Transplant (TP-IAT) surgery. My doctor wrote a prescription for Protonix, but my insurance will not pay for it’s so for now I am taking 2 tablet of Prilosec OTC. Now my insurance indicated they will pay for Omeprazole or Lamsoprazole and this will be long term…forever. Is anyone out there who takes either one of these pills and what are your opinion on how they work for you and the side effects?
February 29th, 2012 at 2:41 am
On October 31st, 2011 I had my Total Pancreatectomy with Islet Auto Transplant (TP-IAT) surgery, at the Transplant Center University of Minnesota Medical by Doctor Gregory Beilman and a crew of doctors and nurses.
Doctor Beilman preformed my Total Pancreatectomy with Islet Auto Transplant (TP-IAT) surgery. They removed my Spleen, Appendix, Duodenum intestine (10” to 12 “) and pancreas. The islet cell where taken out of my pancreas and injected into the Liver Portal vein were they will harvest and produce insulin. The TP-IAT surgery took about 8 hours and I was hospitalized for 11 days with a 6 month recovery. I came home with a feeding and output tube for a few months in, and a 100% full diabetic. I do not have to worry about the Islet rejecting because they came from my own body.
Hello everyone I am Tim, Betty’s husband, Happy Halloween.
I just got home from the hospital. Betty is doing fine. The surgery was over at 4:15 pm. The doctor came out and talked to me at this point. He said he has had very few surgeries’ go as trouble free as this one. He was done two hours sooner than he had expected. Very minimal blood loss. The best news was the amount of eyelet cells that they got out of her pancreas. He was hoping to get somewhere around 5000. They ended up with 6400. He said that she has a very good chance of not being diabetic after the three months that it takes for the cells to start working in their new home, (her liver). All very good news. When I finally got to see her in ICU she looked far better than I expected her to. She was pretty much out of it, but when I called her name she opened her eyes and gave me the biggest smile that I haven’t seen from her in a long time. Thanks for all your prayers. I’m sure they all did help. Don’t stop now though because she has a long recovery ahead of her.
Tim (Betty’s husband)
Tuesday 11/1/2011 late in the evening
Today was another good day for Betty. At 6:30am the phone rang here at home, and to my amazement it was Betty calling to find out what time I was coming down to see her. I got there at 7:15 and found her sitting in a chair and looking very much coherent. She did have a few issues today but nothing more than expected. I left the hospital at 4:30 pm and they were saying that they may be moving her out of ICU yet tonight. I told them that I didn’t think that she was ready for that yet. Her nurse also agreed but we don’t have any say in it. Still not sure what will happen. We will see what tomorrow brings. That is it for now.
Wednesday 11/2/2011
Not too much new information to give you all today. Betty’s blood hemoglobin is still low but they are optimistic that it will start to rebound. Today we met with one of the Diabetes doctors for a bit of an information meeting. At this time she is receiving her insulin through an IV drip. By the end of the weekend her tube feedings will be up to the point that they will start to teach us how to treat her with the needle injections, and also how to feed her through the tube going to her small intestine. A lot to learn in a short amount of time. Betty is still doing exceptionally well for the amount of time that has gone by. She is still on a lot of pain meds and is still very short on her rest. It may be some time before she is up to visitations or phone calls. Please respect her wishes. She will let me now when she is ready. Remember she has been through a very major surgery.
Thanks from the both of us, Love Tim
Sorry for not posting this earlier….I am doing very well, I have a few issue after I eat…like bloating and gaseeeeee.
March 17th, 2012 at 8:14 pm
Susie, Our son had both surgeries – a year apart. Then he got a terrible bout of gastritis – this is what had led to the ruan y surgery. They had to do a scope of his stomach to see the inflammation and ulcers.
That last bout of gastritis was about a year ago and he is doing well. It took about 3 years for him to see the great results some others are seeing because of the severe gastritis and it was very discouraging. He is about 4 years out now and doing very well.
September 26th, 2012 at 9:58 pm
I have been dealing with idiopathic chronic pancreatitis secondary to pancreatic divisium for 3 1/2 years. I have endured multiple ERCPs, stenting, celiac plexus blocks , testing,hospitalizations, weight loss and malnutrition . I am very diligent about using pain meds very sparsely . It was been harder to watch the suffering I have put my husband and 3 girls, as well as friends and family through then actually enduring the disease. I went to see Dr.morgan at MUSC ,where she recommended I undergo TP/With islet cell transplant when ever i was ready. Tomorrow I will see Dr.Christein at University of Alabama for second opinion about the surgery . It is such a scary step and I keep thinking that I might other people that I have read about that had the surgery were so much sicker then me and took a lot more pain meds. My friends keep telling me they miss the old sandy! I am so scared I will make the wrong decision .