Going to Minnesota for the first time....Please help!

Pancreatitis
#1

Hey everyone! So I’m finally heading to Minnesota on 3/24 for my consultation and will most likely be doing the TP with islet cell transplant later that week. After 20+ years I have exhausted my options at Johns Hopkins.

Any advice is appreciated from any of you who have gone out to Minnesota. Such as where to stay nearby that is cheap but decent, is it easy to get around or do I need to rent a car, and whether the surgery has worked for you, especially if you had already had a partial pancreactomy (sp?) prior to this surgery.

Thanks for any info! I really REALLY appreciate it. :slight_smile:

#2

Here is a list of hotels located in the area of the University of Minnesota Medical Center and Hennepin County Medical Center which is one of the two hospitals you will probably be visiting. http://www.hcmc.org/general/hotels.htm

I went to Hennepin County in September for an ERCP and stayed at The Days Inn (612) 623-3999. When you make your reservation make sure to ask for the hospital discount - for any hotel, they usually have one. The hotel wasn’t luxury but it certainly didn’t feel trashy or unsafe. It is very close to many of the hospitals, but they offer FREE shuttle service to and from - which is great. I would either tell them what time to pick me back up or I was able to call the hotel front desk and they would send the van to get me. I am sure that if you ask them about transportation from the airport they could fill in that gap. I drove up from Nebraska, so we had a car - just didn’t use it.

I was not there to talk about an islet transplant - I just have spincter dysfunction so I can’t talk about the islet surgery - other than the medical professionals in Minneapolis are top notch! Dr. Sutherland is known world-wide for the islet transplant procedure and I read in an article that he has trained over 90% of the practitioners who do the procedure.

Amanda

#3

Hello Amanda! How are you? It’s been along time since I have been on, still trying to figure the new web site out-lol. Anyway what is islet transplant? I know when I last seen Grant he mentioned some type of procedure to me and said that only the Mayo Clinic was doing them, so I would have to go there for treatment. Not sure if that is the same procedure he talked about? I have been to sick to travel, and still fighting with the ITP/Blood Disorder, having lots of transfusions :frowning: I just canceled my follow up appt. with Grant as I am scared to drive being so weak and tired. I go see him in May unless I continue to have pancreas flare ups, just another problem I have been having :frowning: I just wish I could go back in time, but don’t we all!!! Ok it’s late and need to get some shut eye so please email me and let me know about the islet transplant ok…Thanks a Bunch! Thinking of you and sending you lots of hugs and prayers…With Love, Mrs Barb :wink:

#4

Mrs barb! How are you?

I think it was you, maybe not – but do you have trouble with eating veggies fresh fruit and fiber?

I went back to the weight watchers plan and packed my days with these foods and oh know i have had the worst attack!

I am also diabetic, i thought it would help me to eat healthier, but my gosh my tummy can’t digest all the fiber veggies etc. on the plan, i am also diabetic so that means i count carbs, ww counts points and i bottom out so often, thinking this is not the best eating plan, just trying everything to “feel” healthier ! if anyone has any comments let me know what you experience ! love to hear ! thinking this plan is not for chronic pancreatic people such as me !

have a good day!
julie

#5

I can’t eat fruits, veggies or much fiber. I had mentioned that months ago.

Funny, my body loves garbage food like cookies! :slight_smile: I find that I eat a lot of crackers,etc as it helps the nausea which has returned full force!

Hoping everyone has a pain free day!!!

Lots of hugs,
Jackie

#6

Hi Barb -

The treatment at Mayo that Dr. Hutchins was talking about would not be the islet transplant. They do that at a few places, but most of them take place in Minneapolis through the University of Minnesota. Perhaps it was something to do with some of your other problems, your liver or platelet problems. Since you have so many non-pancreatitis problems, they may not consider you a good prospect for the procedure.

The islet cells are located in the pancreas and produce our insulin. The reason so many of the people with ongoing pancreatitis problems go through the procedure is that it allows those cells to continue their vital functions while removing the cells that make us miserable! The process involves “transplanting” the islet cells into the liver. It requires several days to a few weeks in the hospital. And, for a period of time afterwards it requires close work with a doctor to determine whether you need to supplement with insulin treatments while your islet cells get used to their new home. For pancreatitis patients, this means a full removal of your pancreas and you will have to supplement with digestive enzymes.

It is exciting to know that this procedure is being conducted for type-I diabetic patients. For patients who have never had functioning islet cells, they can receive islet cell donations through the organ donor program that allows doctors to use healthy islet cells and transplant them into the diabetic patients liver. The difference is that when pancreatitis patients receive the islet cell transplant - they are receiving their own cells, not cells from a donor. So, remember to promote organ and tissue donation to the healthy people that you know!!

Amanda

#7

jackie ! it was you ! now i remember reading that ! i just have a terriable time with “good for me” foods, like you the junk feels soooo much better on my tummy ! i just think we should eat real healthy, but my body cannot take it ! i was thinking i was loosing my mind once again ! thanks for responding ! today i feel like i am coming out of the flare up, i just have to really baby my tummy ! pudding even hurt it today ! well have a good one
julie

#8

Oh my, what a procedure!!! Also I wanted to correct my statement from Grant I still continue to have “high sugar levels” due to “Pancreatitis” and Liver damage that I do have. I have a lot of other issues as well, but as for my Pancreas/liver issue this is why I see Grant, I see Mark Hutchins here in Lincoln for my Blood Disorders/Bone Marrow. I see my family doctor for my other illnesses like thyroid/board line diabetes/overall health issues. I am not sure that I worded it right in the email I sent to you, sorry for any misunderstandings :frowning: I think your right that I am not a a person for the Islet Cell procedure, and wanted to say thank you for letting me know what it is, and how it is done :slight_smile: Have a great day and a pain free one…Big Hugs sending thoughts and prayers your way…Mrs Barb

#9

Hi Julie so nice to hear from YOU!!! :wink: I can not eat fresh veggie, or fiber it does send me right into a attack, makes me mad, cause I just love fresh veggies! I eat a lot of crackers/soups/pretzels/and sometimes toast. Pork is something I can not eat, that sends me staight to bed, with pain meds. I am board line diabetic numbers in the high 150’s, no meds. yet thought (thank goodness) I think Amanda miss understood my email, but I sent her one this afternoon. Because I have so many other health problems some forget that I do still struggle with nausea and lots of pain from the Liver/Pancreas…Anyway I need to go eat something as I am feeling alittle sick. I will get on later and check for emails ok…Thinking of you hoping you have a pain free day…Big Big Hugs. With Love, Mrs Barb/aka Barb :wink:

#10

Hey Mrs. barb!

Thanks for responding, I do know that you have many other illnesses to deal with on top of this nasty pancreatits! I thought about that when i was writing and wanting to know how all the fresh veggies and fruits work with others! i cannot even look at anything fiberish or fresh veggies, i was just trying to eat healthy, thats what my drs tell me here in kansas, “eat healthy, get your fruits veggies fiber etc” some days i think they just plain forget what they are dealing with in us pancreatic people, i was so sick when i could finally sit up i emailed dr.ron and said do you understand how this pain feels? do you really know what we go through, i just have to hear him say something ! i do this to him when i am feeling desperate lonely and scared as it feels like it takes such a toll on my body, like each flare i will never get that back, today i slept all afternoon, it just wears the body and the mind down so ! how are you doing in general mrs.Barb? I hope you have some positives ! you are such as blessing ! i wish you and everyone else a pain free night ! “sweet sleep” to all !

love ya
julie

#11

Jewels,

You sound like the rest of us. Honey, you are NOT alone!!! We are all here pulling for each other. I can’t do fruits and/or veggies. If I crave an apple, I take digestive enzymes afterwards or I pay big time. I got the digestive enzymes at my health food store rather than do the prescription route. I don’t want more meds !.. Hang in there and know we’re all holding you up in prayer.

Love and hugs,
Jackie

#12

Barb,

My condition and eating patterns remain the same as yours…except for the diabetes. The nausea just “kills” me! It hits me every morning while I’m getting dressed and through the morning at work. Ugh!

Sending you love and hugs,
Jackie

#13

oh jackie,

thank you so much, we all need all the prayers we can get, i do take creon but it just does not do the job anymore, i just think it has progressed so much more and it is what it is ! i told mrs. barb i can’t even look at fruit veggies etc now, this was just a killer of a flare ! doing some better just exhausted from it! you know what i mean. i am so glad to hear from you. i wish you a great evening ! love and prayers

julie

#14

Hugging you!!! Jackie

#15

Hi Sleepykisser,
Who did you see at JOhns Hopkins? We have been going there for years and saddened to read they could not help you. We are still working with them and are going through new genetic testing next month to ck daughter’s hereditary CP. Hope you are well and had great outcome in MN. Please let us know how you are.
Terri