Back from First Trip to Mayo!

Hello, everyone!

Eric and I just got back a few minutes ago from our first trip to Mayo Clinic. First of all, this place is AMAZING. I'm not even kidding - it's incredible. Everyone there was so incredibly kind, understanding, supportive, and helpful. They all wanted to do the best thing possible for me and went out of their way to make me feel comfortable.

When we arrived on Wednesday morning, the first thing I needed to do was get bloodwork done. When we were down there, we saw just how efficient they were! They had so many people working, and when we were talking to the guy drawing my blood he said that they actually draw blood from about a thousand people a day. WOW. They even have a "blood conveyor belt" (that Eric loved) that they would open the door to and put the tubes on to send to the lab. Incredibly, incredibly efficient.

After I had my blood drawn we had a few hours to kill so we walked through the subway and skyway system. The Mayo campus is HUGE. It was really awesome to experience. There are pianos in every major building where I'm pretty sure anyone can play if they want to. We heard employees and non-employees play and sing - one employee sang "I Love You (For Sentimental Reasons)", and it was AMAZING. I was so impressed, and I really feel like they hit the nail on the head with putting those pianos in there so people feel comfortable and soothed. Music is a really wonderful thing, so I was delighted to see that there was always someone playing and singing.

In the afternoon on Wednesday we met with both my doctors for my PSC (Primary Sclerosing Cholangitis). The first doctor told me that my bloodwork came back completely normal which was INCREDIBLE. Praise God! This was such a blessing. It's so great to know that I'm "healthy" even though I have these two ridiculous diseases. I was originally scheduled to have a bone density test that day and an ultrasound on Thursday, but they ended up cancelling those because they didn't think they were important tests to do. My doctor also didn't want to do unnecessary tests where we would have to spend more money which was a huge blessing as well and made me like Mayo even more! When I told them about how I want to possibly get a colectomy they decided to make an appointment for me to see the IBD (Irritable Bowel Disease) specialists because they were the experts. Here's a funny thing, though - my doctors are EXPERTS in PSC. Like, it's their life's work. But they also know a lot about UC (Ulcerative Colitis). In fact, one of my doctors had just gotten back the night previously from a conference dedicated to UC. Incredible!

So then the last appointment I had was on Thursday morning with the IBD specialist, and she was awesome! We talked a lot about my disease, and she even gave me hope that there is a small chance that they may be able to salvage part of my colon. This would be INCREDIBLE because if they could do that I would only have to have one surgery instead of two, I wouldn't need to have an ostomy bag, AND it wouldn't affect my fertility AT ALL (a full colectomy would reduce my fertility by 50%).

So here's the plan right now:

Unfortunately my hospital didn't send my records and test results to Mayo like they were supposed to, so Mayo needs to read the slides from my last endoscopy and MRI, and then they're going to schedule me for another endoscopy (and as my doctor said, they'll probably just clear the blockage and put a stint in while they're in there... and he said this like it was super easy for them to do), and then I'm supposed to call the IBD specialists to schedule a colonoscopy either right before or right after the endoscopy - that way I'll only have to do one prep instead of two.

All that being said, here are some things you can be praying for:

1. That the doctors call me quickly in order to schedule a colonoscopy and endoscopy so we can get this show on the road.

2. Steady hands while the surgeons are clearing my blockage and putting a stint in - the ducts are incredibly small and will require a lot of finesse, but it sounds like all of these surgeons are absolute pros and do this all the time (Praise God!).

3. Wisdom for the IBD specialists and Eric and myself to know what the right course of action is as far as a colectomy is concerned. There could be a few reasons to wait to have one, but if I'm showing multi-focal dysplasia (high risk for cancer in multiple areas) or if the dysplasia is in a flat part of the colon instead of just a polyp, then that will be a sure-fire sign that I need to get my colon out ASAP. So please, please be praying for clarity and wisdom for us.

4. Peace and patience. I'm extremely ready to get everything started, and it's hard to wait for the doctors. I know that Mayo Clinic is the best place for me to be at, but it's still nerve-wracking to know when things are going to get done and what's going to happen. I'm really ready just to do what we need to.


Thank you so much to all of my wonderful supporters - you are such a blessing to me! For all of you who don't know, I deactivated my Facebook account for a while. It won't be for long, but I need to severely cut back on my use of that site. It was really getting out of control for a while, and I need to refocus my priorities and actually become productive during the day. So I'll be updating my blog more often, so continue checking back for updates! At the bottom of the page you can also sign up to have my posts sent to your email if that will make it easier for you. I would also love to hear from you all, so please let me know you were here by posting a little something - even something about how YOU are doing, because I want to know how all of you are as well! :)

Thanks again, and hope you all have a wonderfully blessed day. :)