My experiences post total pancreatectomy.

My first posts at BlogSpot transfered here.

Sunday, December 23, 2012

Quite the day today was!!! My chronic pancreatitis (CP) was acting up all day!! LOTS  of pain & nausea but luckily no vomiting!! I’m getting thru it but I’ve had a headcold for about a week & in the last 3 days my ears have been bothering me. Yesterday I tried to go to a local urgent care clinic but they were overbooked with patients so I couldn’t be seen. So, I went first thing this morning at 9:20AM. They didn’t open until 10:00 AM yet I was already 4th in line!!! Thank God I went early because by the time I left she had closed the line. There was a 3 hour wait & it was going to take her past closing time!!Turns out I have an established ear infection in one ear & the beginnings of an infection in the other!! I don’t remember when the last time I had an ear infection was but HOLY COW!!! My ears are killing me!! I’m on an antibiotic and I have a local anesthetis for my ears but the pressure is what is getting to me!! And, dealing with the abdominal issues at the same time, I’m having a hard time getting comfortable. I’ll get thru it but, man, I’m uncomfortable!!I’m trying to deal with the fact that I most likely will not hear from the oversight committee until after the new year. I’m so anxious to get a date for my TP-IAT & the waiting, althought I know it’s the hardest part, is getting very annoying. In my opinion, it’s ridiculous that this extended period of time has to pass before they can make a decision. I know I’m not the only one they are deliberating on, but they are dealing with people’s lives. I’m always afraid when I get abdominal pain that I will end up in a flare that can’t be managed at home & I’ll have to be admitted to the hospital. I guess I’ll just have to keep praying that they come to a decision sooner rather than later. Thanks for letting me vent!!

I am excited and optimistic about the surgery due to the fact the transplant surgeon wants me to get my preop labs done & also, see the endocrine or diabetes docotor. If he didn’t think the decision was going to come back positive then he probably wouldn’t have me do these things. So, I guess I’ll just have to take it step by step!!

Merry Christmas Eve’s Eve!!!!


I’m mobile with the blog now!!

I just spent some time researching taking the blog mobile & …I’m PSYCHED!! I did it! I’m now on mobile web!! So no more long delays during hospital stays!!Thanks for bearing with me as I figure this out!! Have as good as possible a Sunday as u can!!!! Thanks again!!!!!Sandy

Early Merry Christmas to all & Belated Happy Hanukkah to my Jewish friends. I hope everyone has been & will be able to visit with family & friends In a relaxed & enjoyable manner , so everyone can enjoy each others company!I have some minor news on the TP-IAT front…I’m being scheduled for an endocrinology appt pre op just to get a baseline satus report. I haven’t heard back yet when that will be. It usually takes a few weeks for a new patient appt. so, I’m guessing, at the very earliest, I won’t get to see him until the 3rd week og January at the very least. The I have to do my pre op labs & get those done. I want to get this stuff taken care ASAP, because once the oversight committee comes back with an decision to proceed, I don’t want to be starting all of this then. I want to be free to pick a surgical date ASAP after word comes thru that we can proced!! My pancreas needs to be evicted, and soon!!!As I’ve mentioned before, this waiting is KILLING ME!!! The 3 month mark has come & gone. That was the time frame I was told to expect an answer. And now I have to wait intil after New Years for the committee to get back to work.

With each new acute flair of my symptoms, I think, maybe they’ll hurry up their decision because I’m in the hospital acutely ill, awaiting the surgery that they are deciding on. Maybe they do have hearts & can push up they’re decision to help me out clinically. Of all the people on the groups on FB having the surgery, no one that I know of has had to wait this long. As I’ve mentioned in the past, I’m seriously loosing my mind waiting. Thanks goodness it’s Christmas so I can keep myself somewhat distracted with all the preparations

Sorry for the delay between postings! I spent a week inpatient treating a sudden flare of the pain & severe nausea & vomiting. I tried to access this blog via my phone, but I didn’t have any success. I need to investigate how to do that to avaoid long pauses in postings. PLeas bear with me as I learn this whole blogging process. Feel free to comment if you have something to say or ask! I’m looking forward to interacting with all of you as much as possible.
and reading your comments and questions.

Happy Hanukkah, Merry Christmas  & Happy New Year!!!!

Until next time…….Sandy

Saturday, December 8, 2012

Good almost afternoon (it’s 11:54AM here just south of Boston)!! And Happy Saturday!!! I hope everyone has as pain free a weekend as possible & can enjoy some of the holiday preps!!Happy first day of Hanukkah to my Jewish friends!! May you enjoy good food and time with family & friends as you celebrate!!I’ve gotten a number of questions from friends regarding the pancreatectomy & splenectomy (pancreas & spleen removal), so I’ll address those now.

You can live without your spleen, however; you will be more at risk for infection from the usual bugs that inhabit our world. But with good hand washing & strategic avoidance of those you know who are sick, you should be OK. But, if it were not safe & left the person without any immunity, we would be instructed with severe community restrictions, like no going out in large crowds, where a mask and gloves when out & recommendations like that. But other than good hand washing, keeping your immunizations & boosters up to date and getting the all important flu & pneumonia vaccines, those without a spleen are allowed to continue a normal life. We have other immunity safe guards in place naturally & they take over to protect us. Sure we’re more susceptible to colds & viruses but that’s a small price to pay in my book for a chance at a life with a significant decrease in abdominal pain, nausea & vomiting! Sure, I’d like to have a spleen but that’s not possible for me at the current time.

Another question I’ve received is, “How can you live without your pancreas?” Well, it’s not easy but then again, neither is living with constant pain & acute flares resulting in hospitalizations. So, I’ve chosen a pancreatectomy knowing I’ll have to make adjustments. During the surgery, the transplant surgeon is going to re implant my islet (insulin producing) cells back into my body to hopefully decrease the risk of my becoming diabetic. However, there’s a rule of thumb with the islet transplantation that 1/3 of recipients become insulin free, 1/3 need some insulin, diet & exercise, and 1/3 become what’s known as a brittle diabetic. This type of diabetes is very difficult to control with the usual measures. But I’m taking the risk versus benefit approach: I have a 2/3 chance of having a good outcome & if I do become a brittle diabetic, world renown Joslin Diabetes Clinic is right in my area! (And, I’ve already checked & they’re taking new patients!! I’ve already spoken to them & was instructed to call after the surgery!!)! Plus, with an insulin pump, blood sugars are known to be much more easily controlled. I’ve already checked with my health insurance company and they cover the pump & the supplies necessary to operate it. So, I feel I’m ready to take on the risk. And again, the decrease in my current daily, incapacitating pain to me is worth the risk. Personally, I’d rather live with diabetes than continue to live the way I’m living! But that’s my decision. It may not be right for you.

Another job of your pancreas is to digest your foods. Luckily, these enzymes can be replaced with oral enzymes. Which by the way, I already take because my diseased pancreas does a poor job of digesting my food, so this will not be a big deal for me. I’m aware that it takes a bit for your intestines to adjust to the decrease in secretions from your pancreas, and I’m guessing here, from the increase in space they now have to spread out. You’d think they’d be happy the can stretch they’re legs, so to speak!! But, again, it’s risk versus benefit. I’ve asked multiple support group friends who have had the surgery and despite any bad effects she or he is dealing with now, each one said they would do it again even knowing what they would deal with post op!!! That’s all I needed to hear!!

I hope that helps!!! Keep any questions you, my friends, may have coming. I want you all to know what I’m going to be going through & it’s for selfish reasons…I’ll need as much support from all of you as I can get. So, the more you all know, the better.

Enjoy your weekend And try not to get too stressed with the holidays!! They’re here for us to enjoy!!


Friday, December 7, 2012

The waiting is killing me!!!!!!

Before I begin, I apologize to those with a commanding knowledge of the English language, grammar & punctuation. I’m an RN, BSN by trade so, I’m afraid, I’m going to make many mistakes. Please bear with me!! I’m learning as I go along & it is my pre-New Year’s resolution to gain a better understanding of my spoken and written language. Until then, please forgive me!! Oh, & I can’t spell (even with spell check some wrong wrords get thru!!). That’s a subtopic resolution to get better at as well!Next Friday, December 15, 2012, it will be 3 months since my transplant surgeon, Jim Markmann, MD, Mass General Hospital, sent in the paper work to the Transplant Oversight Committee for approval of the reimplantation of my islet cells into my renal (kidney) capsule, but who’s counting!!
I’m going CRAZY!!!!! Dr. Markmann is confident that the outcome will be favorable because we don’t have a choice & it’s not morally wrong nor will it hurt me other than the usual risk. But there’s always a chance it could come back with a no which would devastate me, although I’ve been repeatedly assured that that won’t happen. I’m still apprehensive waiting for the definitive answer!!I’ve decided if the committee comes back with a no & there’s no where else viable to put my islets, I’m going to go ahead with the total pancreatectomy. Diabetes dependant on insulin doesn’t scare me as much as this unrelenting, severe pain with frequent acute flares of said pain does! Diabetes can be managed & I can take steps to better management with an insulin pump which I’ve already checked, is covered by my insurance!! And, the world renowned, Joslin, is in Boston and they’re taking new patients! So, that’s why it’s not as scary! Will it be a pain & frustrating at times? Absolutely!! But I’m up for the challenge.

To deal with some of the anxiety of waiting, I’ve decided to control the only variable that I can…my attire during admission, with exception of the ICU!! As an avid sewer, I’m making PJ’s that are similar to hospital garb, yet are colorful to help brighten my mood & improve my comfort during my hospital stay. I’ve finished the bottoms, a simple PJ bottom with an elastic waist & pockets. Now I’m working on the tops that include snaps at the shoulder seams to accommodate any IVs and they snap in the front to allow the nurses & doctors easy access to my incision and tubes while allowing to put them on by myself, as well as full coverage in the back. I feel a little in control of an event in my life which will be totally out of my control. Of course my attitude & willingness to cooperate post op with all of the instructions I receive is within my control but I mean the general medical events: pain, any complications, restrictions, any side effects. etc.

I’m excited yet terrified at the same time anticipating this life changing medical event in my life!!!! I tend to be on the anxious side in general, especially when I don’t know what to expect. Plus, I’ve been treated poorly by many health care professionals in the course of my disease, so I’m still a little nervous about the treatment I’ll receive. Of course, I’ve been assured I’ll be treated well but I’ve heard that before!! My doctors, Dr Lillemoe & Dr Markmann have been nothing but gentleman and extremely supportive & respectful. It’s mostly the nurses & residents/medical students that I’m fearful of but my care will be overseen by Lillemoe & Markmann, and I’m not above reporting anyone who treats me with disrespect to them. So, I’m hoping I don’t have any problems. I’ll keep you updated on that front!

I’m already putting in place the chain of people who will communicate the events of my surgery & ICU stay while I am unable to access the phone or Internet. Again, to gain some element of control of an uncontrollable situation. So, there will be someone posting for me during that time to keep you all informed.

Thanks you for reading my blog &, hopefully following me!! I appreciate your time with me!!I hope you all have a pain free a day as possible!!

Until next time!!

Sunday, November 25, 2012

Sunday, November 25, 2012Hi!! I’m Sandy and I’m starting out on a new journey in my life with chronic pancreatitis (CP). I’ve decided to chronical my journery so that others living with CP can maybe have an easier road to treatment by reading about my experiences & learning from my mystakes and positive steps. That is my hope anyway!!Over the summer I researched the surgery, total pancreatectomy with islet autologous transplantation (TP-IAT) as a treatment to end my pancreatic disease & decrease my chronic abdominal pain from the CP. I found two very capable doctors at Massachusetts General Hospital (MGH) in Boston who I have consulted with. They have indicated that I am an excellent candidate for the TP-IAT!! This is a new program at MGH, so there’s a bit of red tape that has to be gone thru before my surgery can be scheduled. More on this later!

 In this surgery the doctor, Dr Keith Lillemoe-pancreatic surgeon, will totally remove my pancreas. Then in a special lab, Dr Jim Markmann-transplant surgeon, will isolate the islet cells (they produce my insulin) & purify them, readying them to be transplanted back into my own body. This process takes from 2-4 hours. While the islets are being worked on, Dr Lillemoe will be rerouting my intestines & common bile duct so that they will be able to function somewhat normally and he will remove my spleen also in the process.

When my islet cells are ready, Dr Markmann will inject them into my renal capsule. This is the transplantation process for me. Normally, the islet cells are injected into the portal vein in the liver but this can cause catastrophic clotting in a person who clots normally. The surgeon injects heparin at the same time as the transplant to prevent this complication. However, I have a clotting disorder already, so it is contraindicated in people like me to have the islets transplanted into the liver. Dr Markmann consulted with The University of Minnesota’s TP-IAT program about where else he could transplant my islets to that has been a successful place for revascularization (the process of building new blood vessels) for the islets. Together we decided that my renal (kidney) capsule will be the optimal place for my islets to function after transplantation.

Remeber I mentioned some red tape associated with my surgery? Well, transplanting islets into my renal capsule is experiemental which means that we have to contact the trasplant oversight committee for approval, a process that takes 3-6 months. I’m almost at the 3 month mark…another 2 weeks & it will be exactly 3 months. Dr Markmann told me in his experience it usually takes 3 months to get an answer back. He also stated that he is extremely confident that we will be able to go ahead with the surgery & transplantation into my renal capsule because there is no other alternative & it is the best option in my particular case. So, It’s killing me waiting for the final decision regarding my surgery!!! I’m hoping that sometime in January I will be able to have my surgery!! Wish me luck!!

So, this is where I stand as of right now. I’m in a holding pattern. I’ve had 2 hospitalizations in October for flares of my symptoms but have been home since getting through the ups & downs with the help of my PCP & GI doctors.

Thanks for reading my first post! I hope to be back at least once everyday to keep you posted on my journey with CP!!!

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