FINALLY Home From the Hospital!

Hey, everyone!

For those of you who haven't seen my barrage of Facebook posts and Tweets, I'm finally home after a grueling last few days! Here's how it went down (I'll leave out the gory details):

I had surgery on Friday morning (the 14th). I checked in at 6 am, but I don't think my actual surgery started until about 10 am. I was scheduled to be in for 4 1/2 hours, but everything went so smoothly they were done in 2 1/2! That was such a huge praise, because even though I still had to deal with a lot of issues afterwards, I would've had to deal with even more issues the longer I was under anesthesia.

I started eating solid foods that evening (which was CRAZY), and even though a couple of my organs (my bladder, in particular) had some trouble waking up, I did really well for the most part while I was still at Mayo. They released me on the 16th because I was doing so well, but unfortunately things started going downhill from there.

We're not really sure what did it - it may have been the "trauma" from an hour and a half drive home, it may have been that I was released too early, it may have been that I ate solid foods too early... we're not really sure. When I got home I almost immediately started feeling nauseated, but I hoped it would go away. Unfortunately we weren't given any nausea medication, so there wasn't a whole lot we could do to stop it. Late Sunday night my nausea became so extreme that I started vomiting and had to be rushed to the ER. Let me tell you... For someone who has never had an experience in the ER like that before... It was scary. They pumped me full of meds and did X-Rays and CT-Scans right away.

They found out that what was left of my colon hadn't really woken up yet, so when I was eating food it wasn't going anywhere (thus it came back up). They were very strict about not letting me have anything to eat or drink on Monday, but on Tuesday morning they bumped me to clear liquids, then full liquids, and then on Wednesday morning they let me have solid food. Since I was able to keep everything down, they finally released me Wednesday afternoon! Since then, I've been doing really well.

Right now I'm actually not on any pain medications - my doctor at our local hospital told me that narcotics slow the system down which means I could end up having another episode like I had on Sunday night. As soon as he said that I decided it would be nothing but Tylenol for me! I haven't needed anything at all yet though, which is a huge praise. The main thing that gets to me now is the anxiety and the exhaustion.

All that being said, here are some things I could use some prayer for:

1. Anxiety - Ever since the surgery (and especially after Sunday night), I've had a lot of trouble sleeping due to anxiety. When I was at the hospital they gave me medications to help me sleep, but now that I'm home I really want to take as few meds as possible. I only slept about 2 hours last night and even though I know sleep will come eventually, I've never had to deal with anxiety like this before and it's really frustrating. Even when I feel calm my heart feels like it's racing, and I'm really wanting that to go away so I can relax and be able to sleep.

2. Strength - Getting home yesterday and showering for the first time in 6 days was extremely exhausting for me. Today I just feel dead on my feet. I'm in a good mood, but my muscles are so tired and don't really want to move. I know that this is all part of the process, but it's definitely frustrating especially when I'm dealing with not sleeping and my muscles not wanting to move.

3. Patience - Part of the reason I'm not taking medications is because I know I will get better faster the less time I lean on those things in order to feel better. I know there are many things I cannot do for a long time (ex: I'm not allowed to lift more than 5-10 pounds for at least 6 weeks), but I want to feel more able to do normal things like... walk. Haha :) So far I really do feel pretty good, but I still get very tired very quickly (I know I'm only 6 days out from surgery and I'm doing really well, but it's still frustrating).

4. Moving - Now that my surgery is out of the way, it's time for Eric and I to really focus on moving. I know I really won't be able to help with the actual process very much, but please pray for volunteers (or please volunteer if you can) to help us pack and clean when we need to do those things. Please also pray that Eric is hired out in CO soon so we don't have to worry about that anymore. I know he will be hired somewhere, but the waiting period is definitely stressful.

Thank you all SO much for your prayers, encouragement, and incredible support on this journey! We so appreciate it, and I feel so overwhelmed by all the flowers, cards, texts, messages, etc. that I've received. Eric and I are so blessed to know you all!

PS - We received the pathology report from my surgery yesterday and there was NO sign of cancer in my colon, which is a huge praise!

Please also let me know if you have any questions or want further explanations on anything - even though I'm not on meds I'm so tired that I'm sure I've left some things out. Thanks, friends! <3

BIG NEWS!!

For everyone who didn't see it on Facebook yesterday, we FINALLY have news! And praise God, as long as a couple tests come back normal, we have the best case scenario with both diseases!

Firstly, with my PSC (my liver), they opened up the stricture in the duct and my doctor doesn't anticipate me needing anything else done for possibly the next decade. Wow! I will still need to get an MRCP (An MRI, but they check for different things) done in 6 months and blood tests done every 6 months to make sure my levels are still okay, but I can definitely do that! He said that on average patients who have PSC need a liver transplant about 15 years into their disease, but he does have patients who have one stricture opened and never need anything else done. Obviously we have no idea what it will be like for me, but this is good news - especially since my levels are all normal and he doesn't anticipate me needing anything else done with that for a while!

Secondly (and most importantly), I am having my colon removed on June 14th. Yes, you read that right. I am having major surgery in just 8 days! My UC itself is actually mild, but because I've had this disease so long, I'm so young, and I do have some concerning areas that could turn cancerous later on, my doctors recommended surgery. The surgeon that we talked to was going to give us names of doctors in Denver who could do the surgery, but while we're here in Minnesota, I would much, much rather have it done at Mayo. Just so everyone knows, this is the only reason it's getting done so quickly. I don't want anyone to be worried about why it's moving so quickly - since we're moving in just 6 weeks, I will need all that time to recover.

Here is the WONDERFUL NEWS, though! My disease is labelled "rectal sparing," which means the last 12 inches of my colon are untouched by my disease. This means even though my colon will mostly be removed, I will not need a second surgery OR an ostomy bag! This surgery will also not affect my fertility AT ALL. Praise God! This is exactly the kind of news that we wanted to hear! If I needed to have surgery, this is the surgery we wanted to have. The only clincher is that because part of my colon will still be there, I will continue to be on the medications I'm on now, and I will need to still have yearly colonoscopies just to make sure everything's okay. That's definitely a bummer since I was hoping to just be done with it, but I'm willing to do those things if I don't have to deal with the daily affects of the disease and I can possibly still have kids.

So here's what's going to happen: Eric and I are going down to Rochester the night before so I can rest and prep for the procedure (3 times in three months.... I got this), and then we'll find out the night before what time my surgery will be at. I guess they have to get outpatient procedures scheduled first, and then they'll know the night before what time they can do my surgery. After that, I will spend about 5 days in the hospital. It may be more or less, depending on how good I feel (Mayo likes to get people of the hospital quickly, so if I'm feeling good enough they won't see a reason to keep me longer - which is awesome). Once I get home, my recovery time will be about 4-6 weeks. 6 weeks is the absolute maximum, though, which is really nice.

This means though that I won't be able to help Eric with any packing or cleaning when we move. So this is a message to all our Minnesota friends: If you can, please offer to help Eric with anything he needs. I feel so bad that there's going to be so much on his plate. I know that he loves me and he is fine with doing whatever needs to be done, but I also know that this is going to be hard on him. I wish I could help out with packing, cleaning, and moving - I'll do what I can when I'm feeling well enough - but unfortunately this is the way things go so we can just get my surgery out of the way. If you can't help please don't feel obligated, but I know that we could definitely use it since there's going to be a lot going on.

Thank you all so much for your prayers and support. We really appreciate it, and we will continue to keep you updated on everything that's going on! And you can expect more blogs from me since my computer is going to be my only source of entertainment for a while.... :)

Done with Procedures! (For now)

Well, Eric and I are back from Mayo for the second time. For all of you who might not have known, I had an endoscopy and colonoscopy yesterday. I was also supposed to meet with a couple of doctors afterwards, but I guess they were dealing with a "situation" (I think there was a really needy patient or something) yesterday, so I didn't end up going into my procedures until about 3 hours after my scheduled time. I'm okay with that, though - I think I would have been way too groggy to process anything that the doctors told me.

So anyway, there's VERY good news on the PSC side of things. I asked my doctor beforehand if he thought they might put a stent in my bile duct, but he told me that was unlikely. He said the most likely scenario would be that they would just dilate the duct and take some biopsies. Thankfully, that's exactly what happened! What that means is that my duct is open now (for however long), and I don't need to worry about it at the moment. That also definitely cuts down the chance of a tumor being the cause of the stricture. Praise God! Definitely good news.

I don't know anything yet about my colon - all I know is that they said things went very well.

I've officially decided that I hate general anesthesia. It feels great to get some sleep in, but waking up SUCKS. I'm kind of OCD about being in charge of my faculties at all time (one of the many reasons I've never been drunk and don't even want to get tipsy), so not being able to control when I fully wake up is definitely horrible. It's been almost 24 hours and while I'm mostly back to normal, I still have this touch of tiredness and being out of it. Sucky.

Eric and I go back to Mayo on Wednesday for 3 appointments starting at 3:20. Our first one will be with my PSC doctors, Dr. Tabibian (who I saw after my procedure leaving the hospital in his gym clothes...funny) and Dr. Talwalker. The next appointment will be with Dr. Divine, who will be talking to me about what happened during my endoscopy, I believe. I'm actually not totally sure what I'll be talking to him about since he's not the doctor who actually was in the procedure, but we'll see. Lastly, I'll be meeting with my UC doctor, Dr. Hanson. So... all good things! I'm actually semi-considering tabling the idea of getting a colectomy depending on what she says. There's a different kind of medication called Remicaid that I haven't tried yet, but a few of my friends are on it and it has actually put them into remission. It is expensive and requires injections every couple months, but it might be worth it in order not to have major surgery right away. Again, this all depends on what my doctor says about the urgency of my colectomy and whether or not they would have to do a full one (with the ostomy bag and the effect on my fertility).

Anyway, that's all the news I have for now - let me know if I left anything out or any of you have any questions!

Prayer Requests:

1. I'm still in pain from yesterday's procedures - my stomach is sore from not eating for 2 days and then trying to adjust to food again, and my neck and throat are sore from the endoscopy. Prayer for that to go away is definitely appreciated!

2. Please pray for good news when we talk to the doctors on Wednesday. After how well the procedures went yesterday I'm definitely hopeful, but I'm also trying not to have false hopes - I want to be realistic, yet at the same time pray for good news.

3. Eric and I are going to get started soon on the whole moving process (we move in only 43 days!), and we need as little stress as possible (although we know there will still be a certain amount of stress involved with moving across the country...). We need to start looking right now for storage units in Colorado Springs (we'll be living with my parents for the first couple of months), and we need to look for a moving truck that isn't horribly expensive.

Thank you, everyone! We love you all, and we feel so encouraged and blessed by all your support. Keep it comin'! :)

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. :)