Advice from Others

Tuesday, February 7, 2012

The online support group was a really great tool for me at first when I was beginning to understand what I had as a disease and what my options included. I really owe the groups in helping me make a life changing decision, you could say. Without the groups and the people in them, I would not have known about the TP-AIT, I would not have known Arizona had such an extensive center, and I probably would not be doing this surgery in 9 days. Wow, 9, really, eeeek. Anyways, what I am saying is that there is a time and a place for the support of others going through the same thing.

I believe people have selective hearing. The surgeons tell you over and over again all of the bad things that can happen once they take out your pancreas. They tell you that you can die. They tell you that you can have liver failure and need a liver transplant. They tell you that you can have a solid, rock hard pancreas that has no left over islet cells and that you could need a pancreas transplant from a donor, they tell you a common side effect is the loss of massive amounts of blood, they tell you that they have lost patients post-op (none on the table), hmmm you getting the picture? They do not paint a portrait of roses, butterflies and rainbows. Nope, not at all. They also tell you that you should plan on diabetes (look at a pie, 70% chance of it 30% chance without it, much more pie has it). They say that you will have digestive issues that could take a lot of time to fix and cause relentless diarrhea (there, I finally said it on this blog, it happens, it sucks) and cramping. They tell you that you could malabsorb nutrients forever. They tell you that you will have the most pain you have ever had in your life and it will be worse than any horrific attack you have ever had. They tell you they won't be able to fully control your pain. Okay I am done.

With all that being said, they do paint the picture and prepare you for the worst. Mentally, I prepared for the worst of the worst to happen. I prepared my family for that too. I have talked to them about what will happen if I needed another organ transplant. I have talked to them about what to do if the "worst" happens. Yes, I have had that horrible conversation with my mom about organ donation (yes, of mine, God forbid) and life support (do everything you can to keep me alive and I promise to fight like hell- go in there and yell at me to wake up). I am ready to count every single carb I put in my mouth and keep a diary of each piece of food I eat. I am ready to prick my finger 5 times a day and give myself multiple shots a day. I am ready to stay near a bathroom until I am blue in the face. I am ready to hang out in my room until I can make it through a few hours in public. Of course none of these things make me perfectly happy and all of them scare me like hell. I spoke at great length with my best friend Katie, who also happens to be an RN, about most of this. I told her that I keep getting emails from people supporting me and also "warning" me. I appreciate them, and even ask for advice sometimes. I wanted to know the good, the bad, and the ugly. They say things like "I hope you know you won't walk out normal and your life won't return to what it was before you got sick" or "you may get diabetes." I appreciate it, but I may have overdone it on the advice from others.

For my mental health I will need to stay off the support group for a while. It is just too close to surgery to have these reminders of all that can go wrong around me, even though I have come to love the strangers I talk to in the groups. I know bad things can happen. I know that many people who have this surgery remain sick for a year or even more after it is over. I do know my body won't ever be like it was in 2008:-( Boo. But, I also know people have success with this surgery. I have heard those stories too. I have heard from the beautiful girl who had this surgery and one year later got pregnant with her first baby, who is now 2 and is loving her married life. She got her life back and doesn't have any issues at all, not even diabetes. I know of the medical student who is 6 months out of surgery and back at med school studying her heart out to help others one day like doctors helped her. I know she goes to Zumba and eats Chipotle. I know about the man who has 2 babies and a wonderful wife who was back at work THREE weeks later, yes 3, but he did work from home and had a flexible schedule. His wife and I talk and she says that he never complains of pain 6 months out and just got cleared to travel internationally for work again.

Katie and I came to the conclusion that even if it takes me THREE years to fully recover, this surgery is worth it. In the grand scheme of things, 3 years is nothing to gain a life of no narcotics and no pain back. I know that I am going to get through this. I will leave you with a quote from a book my mom gave me today. She bookmarked this page: "When your world feels like it's falling apart, I hope your friends, family, and faith are the bonds that hold it together." Without those things, I will not make it through this. I am so thankful that God has given me my "tool bag" of weapons to use. I am ready to get this over with and start healing.

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