Sunday, May 22, 2016

He loves me Mom!

Kahlan came into our room, while we were watching Castle, and was bursting to tell us something. She said,  "Mom, Gratton says he loves me!" She was just so excited and happy. Then Gratton said, I love you kahlan. Then she said, "I love you more!"

Monday, May 16, 2016

Minnesota Monday

We got to Minnesota safe and sound! We got to our hotel and were able to get 4 hours of sleep before leaving for the hospital. We're in the taxi right now. We got a great deal on a hotel, and I slept like a rock. David had a hard time getting sleep, but hopefully he'll sleep better tonight.

Sunday, May 15, 2016

Plane Number 2

The second plane, taking us from Seattle to Minnesota,  is much nicer than the first one. I really was worried that last one would fall apart mid flight. Before takeoff, the pilot said that we had to fly at a lower altitude due to maintenance issues, so the flight would take longer than expected. Due to the altitude and slower speed of the plane, we barely made our connection!

This plane though is much nicer, and makes up for the first one! There is even an outlet to charge your electronic devices! This is the first plane I've been on with that particular amenity.

Unfortunately, due to the connection being so rushed, we didn't get to eat dinner. I'm starving, and might even cave to these ridiculous airplane meal prices. I can't eat after midnight, due to my surgery in the morning, and we're supposed to land right before midnight, Minnesota time. Hopefully I'll catch some food either on the plane or at the airport!

The first flight was pretty awful. I was in lots of pain, the seats were uncomfortable, and someone sitting near us smelled bad. So far this flight is much better. Talk to you in Minnesota!

Plane number one

We drove to Utah this morning, and just got on the first plane. This plane goes to Seattle, then we have a 30 min layover, and then we fly to Minnesota. My pancreas is apparently angry today, and hurts really bad. Luckily tomorrow morning, they will remove that stinky little stone from my cystic duct. The Dr said it likely won't take away all the pain, but I'm hoping it at least helps a little. Well we're about to take off. Here's hoping this flight goes ok. We're sitting behind the emergency exit row, and it doesn't even look like the door is completely sealed. It's awful. With the prices they charge, you'd think they could afford to keep their planes in good shape.

Friday, May 13, 2016

Finally an ERCP

Monday morning, after 5 years of constant pain, I'm finally getting an endoscopic retrograde cholangiopancreatography (ERCP).
It's usually a very routine procedure to remove gallstones from your bile duct. I should've been able to get it with my first pancreatitis attack, in 2011  but for some reason the Dr treating me in the Hospital decided not to do it. The surgeon just took out my gallbladder, and they said I'd get better.

So they removed my gallbladder, but the pain continued. The GI Dr wouldn't believe me though because the pancreas numbers went back to normal after a few months.

 All my other drs (primary care and my hematologist I see for my blood disorder) said this is the first time they've ever had GI Dr's refuse to do it. We've been trying to get it done for 5 yrs, because they have thought there must still be a stone there or sludge or something causing the pancreas pain. We even went to the university of Utah.

My PCP and my hematologist both had different Dr's agree to do the ERCP during consults over the phone,  but then when I showed up they would refuse to do it.

Well, January of this year,  after 5 yrs, my pancreas numbers finally got high again, and my PCP had proof that my pancreas needed to be reconsidered. This was in January. I went back to the local GI Dr, after this pancreatitis hospitalization, and after seeming like he finally believed me, he ran labs. But when he got the results, once again said the labs were normal and there was nothing he could do. This brought me to my breaking point.

I do my best to look on the bright side and not complain, but after 5 years of pain, finally having the lab proof that the Dr's said we needed, and then being thrown aside again, I'd had enough. One night (in March i think), the pain was so horrible that I got desperate. I started scouring the Internet for Dr's who cared about patients suffering from pancreatitis. I found the university of minnesota, where they pioneered the TP-AIT surgery for patients with chronic pancreatitis. I don't have chronic pancreatitis, but I decided that if they cared enough about their patients to take out their pancreas' and allow them to choose diabetes over chronic pancreatitis, these Dr's must get it.

I contacted the university of minnesota, and saw Dr Amateau on April 6th. After doing an MRCP with secretin, he said they found proof of a small stone in my cystic duct. They scheduled the ERCP to remove it, and it's being done Monday May 16th. He said it might not resolve all the pain, but after 5yrs I don't expect it to. Any answers would be nice though, because pancreas pain without an explanation is pure torture. I wouldn't wish it on my worst enemy, even if I had one.

Sunday, May 8, 2016

Mother's Day 2016

This mothers day was awesome! David made me am omelet and jonny got me my favorite drink and candy. We all went to Yellowstone with Bill and Kirstie and their kids, and Tyson and Chelsea and their kids. We had lots of fun.
Gratton learned how to say hi in Chinese today. While at old faithful, we met a few people at from Beijing, China and he said he liked them a lot. He took pictures with them, because he said he wanted to remember them  it was so cute. It was a good day!