I am desperately searching for the pancreatic stomach enzyme Viokase.  This is a pancreatic stomach enzyme that helps food digestion and I have not been able to find any since last Thursday.  Spent the day in the ER yesterday getting IV fluids and IV insulin, by the time I was at the hosp. 0600 my glucose level was too high to measure!  the new digestive med CREON is not working.  If anyone has a suggestion please e-mail me directly,  thanks Linda

Hageman Foundation is so thankful and grateful that many people having The Whipple Procedure are visiting this site and forming good relationships and getting actual, factual, up to date medical information about having  the Whipple Procedure.  We have decided to dedicate a new entity and web page for  important information.  We are thinking about a new domain for this entity, for patients undergoing the Whipple Procedure and we will start doing more investigating on major medical centers and physicians and surgeons who do the Whipple Procedure many times a year.  I have found, in my research, that the best outcomes for the Whipple Procedure is to have this very complicated at a major medical center.

Your stories about your  experiences with the Whipple Procedure would help Hageman Foundation a great deal.  Please do not worry your medical information and identity are protected and will not go to any other entity unless you give permission to have the info put on the blogging site or agree to have your story posted. 

 I am a Registered Nurse,licensed  in Tennessee and I am bound in my scope of nursing practice to keep confidential medical information or any information you present to me confidential.

This is where the Hageman Foundation for Multiple Endocrine Neoplasia (MEN) has lead us and we are going to be presenting new information, on a regular basis,  to all who are undergoing the Whipple Procedure.  Please help me to help you for instance what king or information is or was helpful pre Whipple Procedure and Post Whipple Procedure?  Have a good outcome let me know where you had your surgery done, even if you felt you had a bad experience please let us know.  What are your “Pearls of Wisdom” you would advise.  We can then start to provide this in an open, non judgemental writing  just to let people know how others have done after the Whipple Procedure.

I will again state that we do not address the pancreatic  cancer end of information because there are others who provide this kind of information and do this very well.  The Whipple Procedure is not only done for Pancreatic Cancer but often times for MEN patients who many develop Pancreatic Neuroendocrine Tumors and need to undergo the Whipple Procedure.

As most of you know I myself  have had  to have a Total Whipple Procedure, because of Pancreatic Tumors in my pancreas.  I know first hand how difficult life can be between the diabetes (Pancreatogenic Diabetes) and every day eating and the pancreatic enzymes I have to take to digest food and what is involved to live a pretty normal life without a pancreas.  Anyway I would appreciate you help with this passion of mine to help provide a positive, informational, blog on the Whipple Procedure.  By the way we are referred as Whipplettes those of us that are living several after the Whipple Procedures.  So it may sound funny but I am putting out a call for us Whipplettes to unite and of coarse their support persons.

Please help me to help others!

Linda Hageman, RN 

linda@hagemanfoundation.org

www.multipleendocrineneoplasia.org

1. I too had a problem regulating the pancreatic enzymes. I was on Viokase 16 and I am now taking Viokase 8.  My physician has told me that you cannot take too much Viokase and you will have to experiment with your dosages on your meals  and foods.  The unofficial results of the Hageman Viokase project is.  Take Viokase one or two  before meals and  then the rest I take during the rest of the meal.  I am now taking the Viokase 8’s as they are smaller, easier to swallow and seem to help my digestion more.  I take 48 mg every time I eat a meal.  If I am eating a heavy fat or pasta meal I take one or two more Viokase.  With snacks I take 2-4 pills per snack.  If I somehow forget to taker the enzymes I take as soon as I remember.  Taking the Viokase 8 is a little less expensive than the Viokase 16.  I have a hard time digesting ice cream, and regular milk so I use the organic skim milk, I am able to eat cheese and yogurt on a regular basis.  The big lesson I have learned is not to forget to take your stomach enzymes and take your enzymes as soon as you realize you have forgotten to take them.  I have a pill case that I carry with me for the pills.  Oh Yes  restaurant food often upsets my stomach so I have tried to not eat out more than 2x a week.  I do not drink alot of fluids with my meals and no carbonated beverages I drink lots of H2O and decaf Tea or iced tea.
2. Thank-You for using The Hageman Foundation Website\  Linda Hageman, RN

I thought this may interest some of you.  This is the announcement by HHS Secretary Sebelius regarding Pre-existing Condition Insurance Plan, www.hhs.gov/news/press/2010pres/0720100701a.html.  I monitor this site regularly and will pass along new information as it becomes available.

  Linda Hageman, RN

Please do not be discouraged if your Blogs are not posted immediately they will be soon.  I have been in the hospital for several days to get IV antibiotics and IV fluids.  With the very Brittle (Pancreatogenic) Diabetes, and no Spleen, a cold or virus will land me in the hospital for several days.  I have a wonderful Internist, who keeps the IV fluids I need in his office and he always tries to keep me out of the hospital for fluid hydration, however there is a point that I have to be admitted to the hospital.

I am feeling much better now but am not leaving my house for a few more days.  Having a office at home really helps me keep up on everything.

Plans for the Hageman Foundation Seminar are being worked on and it is a definite GO so mark your calenders for the Hageman Foundation in collaboration with Mayo Clinic Multiple Endocrine Neoplasia Seminar.

For those of you that are blogging on the Whipple Procedure Page I want to Thank You.   This is a very active blog and your blogs are truly inspiring.  Since The Whipple Procedure page is so active the programming cmt. planning lectures that would pertain to The Whipple Procedure.

This week I have been putting a list together of different organizations that will help with the cost of medications and medical supplies.  As I am gathering this info please feel free to e-mail me and I can try to steer you in the right direction.  There are several options available  and the more I research this topic the more I am learning about ways some drug companies and or other non profit organizations can offer help with certain medications.  If you e-mail me you can register for the Hageman Foundation Site  and leave a comment or e-mail me directly linda@hagemanfoundation.org.  Most of these programs you will have to supply information to see if you qualify such as tax returns, address, documented medical history, and sometimes your physician will have to fill out a part of the application

If anyone else has info, about medication programs, that they know,  about I would appreciate your help with this.  This is so important as I know that my medications cost over $2000 a mo., and I need every one of them and that is a figure most people cannot afford.

Yours Truly,

Linda Hageman, RN

We have been pretty busy this summer.  We now have a Program and Development Director and her name is Katie Kinney.  Katie and I traveled to M D Anderson in Houston,  Texas for a one day MEN Seminar.  There were over 70 Mener’s in one place at the same time!!!  We all identified ourselves by the scars on our necks.  While at MD Anderson it was my privilege to meet with Jo Grey, from the UK and AMEND.  We had a chance to get together several times over the 4 day trip and it was very interesting to meet with her and learn more about AMEND and the types of material they have worked on and for me to be able to put a face with AMEND.  It was also wonderful to get to know the MD Anderson staff and to learn the latest, greatest, medical information,  regarding MEN.  I will be writing more about this new information in the near future.

In July,  Katie and I traveled to Mayo Clinic, Rochester, MN.  We attended the International Endocrine Surgeons Conference while we were there.  We were able to have a Hageman Foundation Table where we passed out our new literature and packets.  I attended  the lectures and met with Endocrine Surgeons from all around the World.  We were very enthusiastically received and feel we have gathered more support for Hageman Foundation For Multiple Endocrine Neoplasia.  I will be keeping everyone posted as plans are made for the September, 2011,  Hageman Foundation in Collaboration with Mayo Clinic MEN Seminar.  Thanks for your support. Email me your information Linda@hagemanfoundation.orgto be put on our mailing list.  Thank You for Your Support  Linda Hageman, RN

I too attended the seminar at MD Anderson and it was a very informative seminar on the different topics that they put on. I have recently attended the International Endocrine Surgeons Seminar in July.  Physicians are realizing that they need to have more up to date reading material  to give to patients and their families.  Hageman Foundation is the only source/non profit to provide this type of educational materials.  Also,  Hageman Foundation for Multiple Endocrine Neoplasia in colloboration with Mayo Clinic is at this time in the process of program planning a Seminar September 15-18th in Rochester, Mn.  Please send me your suggestions for program planning and mark your calender for these dates.  You can look on this site for our save the date Bookmarks contact me with your information and I will send you the information. 

Also anyone interested in a book and CD from InterScience Institute  that describes the NeuroEndocrine Tumors and what testing should be done and those diagnostic codes and testing codes for these tumors and lab test the insurances want to see (it will allow your insurance companies to  better understand the specialized test the physicians are ordering, and thus will cut down on the rejection notices you receive!!)  just send me your contact information and I will get this information to you.  InterScience Institute has graciously donated these books and CDs to Hageman Foundation to get this information into patients and physicians hands to better understand Neuroendocrine Tumors and providing the codes to help you get your testing paid in a timely fashion.

Linda Hageman, RN

  Linda Hageman, RN

Cleveland Clinic indeed had a great Endocrine Surgery Department and you do need a Endocrine Surgeon to perform this procedure.  On this site there is a video of a surgeon performing the Whipple Procedure Laparoscopy at Mayo Clinic.  Usually this does not really cut down on the surgery or recovery time as the Whipple is a very complicated surgery.  Given the choice 4 years ago I would have definitely opted for the Laparoscopic Whipple Procedure.  Cleveland Clinic has a very good reputation and I would feel comfortable with these surgeons for the Whipple Procedure.  You have done your homework and know these physicians do several of the procedures a year and that is also very important.  I wish you the best of luck and if you have any further concerns you can e-mail me directly linda@hagemanfoundation.org and I will reply.  I would also call you if you send me your telephone number and we can chat on the phone. 

 Linda Hageman, RN