Mayo News- Day 8

We're almost done with the Mayo updates!! yay.

Day 8 arrived and after the disappointmend of the previous day of rain (minus swimming in the rain) we were almost at our limit of doctors. Or at least I was anyway. I have to admit that I did bug mom more on this day than any of the other days but it was all in good fun. And it resulted in a few good rounds of snickering in the waiting rooms seeing as we were both rather slap happy :)

On the adgenda for the day were two consultations, one with the infectious disease doc and one with the cardiovascular specialist. The infectious disease doc, Dr. Brumble, was being brought in to help decide if my immune system was playing any role in the problems I was dealing with and to say whether or not I would be healthy enough to try imuran or if it would compromise my immune system too much. The cardiovascular specialist, Dr. Stewart, was going to do an overview of my veins and all that to see that we wouldn't be compromising my stent or anything by trying anything else.
The consultation with Dr. Brumble went really well. She was so upbeat and fun to talk with. Basically what we got from her was that so far, from what they'd tested, I have a healthy immune system and there's nothing wrong there that is causing any colon issues. She did do a couple more tests that we won't get results from for a few months but from all the tests so far my immune system looks pretty a-ok :)
Moving on to cardiovascular! I actually don't remember too much from this visit...ha. Other than it went well and we didn't learn too awful much that was new. Except for one thing concerning my bloodwork that I get done regularly and how to make that more accurate, and that will help a lot! So I guess that was something big that we learned. Other than that I got the ok from him to try any medicine that Dr. Picco would want to try and my stent and all that jazz shouldn't be compromised by anything! So good news overall.
That night I believe is when we brought a little Kentucky down to the Florida folk. ha. Me and mom and dad made homemade biscuits and gravy, sausage, and eggs for the family we stayed with! (I absolutely LOVE having breakfast for dinner so this was therapy for me, ha.) It was yummy but so odd because it made their house smell like my grandma's house whenever we cook a big breakfast. A very odd sensation indeed! But it was delicious as always, especially my soy gravy. haha. Surprisingly delicious!

Mayo News- Day 7

(Ok, I know this has taken forever to get all this up so we're just gonna do the reader's digest version of these last few days. Here goes!)

The weekend was certainly refreshing and the break we all needed to get our energy back up for the next few days of doctors. As far as we knew, all I had left was to get the skin test read and to meet with the infections disease doctor, cardiovascular specialist, and then the final visit with Dr. Picco. We had already been in Jacksonville for a week, had seen 3 different doctors, and still had no idea what Dr. Picco was going to say at the end of it all. Today however was Monday and we were going to just get my skin test read early in the morning and then it was off to the beach for the whole day! At least that was the plan anyway...

We went to the office and all they had to do was look at the three places where they injected stuff under my skin and see if I had reacted or not. Thank God, I am not anergic!! There was one spot that was supposed to react for sure and it definitely had. There was a bump, it was itchy, and it was larger than 10 mm. So, I was done for the day, no more doctors.

We had worn our bathing suits under our clothes and had packed up food for the day. Only problem was that it was pretty overcast. It didn't necessarily look like it was going to rain but it wasn't a beautiful sunny day either. We drove to the beach, which was only about 10 minutes from Mayo, and unpacked and set out to hang out. Unfortunately it kept getting darker and darker until it sprinkled about 4 drops and then... it began to pour!

Mom immediately packed up and ran back to the car but Dad was already in the water so I bagged up my camera bag and headed to the water with him! It was gorgeous. The waves were still really small despite the wind but the way the rain was falling was just like a scene from a movie. You could only see about 15 feet away from you and it was coming down in sheets. I couldn't get enough of it :) There is just something about being in the rain that brings out a joy from deep down and for me it just stirs and stirs until I begin to laugh uncontrollably. I love it.

We stayed in the water for about 20 minutes or so until it started to thunder and we quickly high tailed it outta there. We ran back to the car and then made the torturous drive back as Mom blasted the air conditioning on our wet bodies. Let's just say it were cold!

Game Pics

The condo on the river.

The river taxi.

Torry's black eye

David Garrard!!!!

So excited to be there...

Ebon Britton, he's only 21!!

The stadium

On the river taxi

We made a sign :)

Downtown Jacksonville

Mayo News- Day 6

If you know me you should know that I, as well as the rest of my family, LOVE LOVE LOVE football. My Sundays usually always go as follows: Church, lunch, football/nap/football... and that's pretty much it :) ha. So finally the day I had been waiting for was here, however, this Sunday routine was going to be slightly different. I was going to church and I was going to eat lunch but I wasn't going to take a nap. I was going to my very first NFL game ever!!! Jags vs. Titans baby. I was pumped!

As soon as church was over we drove downtown to our friend's parent's condo because it is on the river close to the stadium. We grabbed some food real quick and then decked out in our Jags gear! Normally we would be Titans fans I guess but since we were in Jacksonville we decided to support the city. Plus, the quarterback, David Garrard, is the athletic spokesperson for Crohns disease which is similar to ulcerative colitis. It's just cool knowing the has the disease too and look how good he's doing! ha. Anyway, we were rockin the Garrard jerseys and off we went!

We left the condo and walked out behind it onto the boardwalk that runs all the way down the river. We walked down a little ways to the dock where the river taxi runs. Yup :) we got to ride a river taxi across the river to the stadium!! I was so excited I almost felt like we were pulling up to the ball in a pumpkin carriage :) ha. It was awesome.

So we get to the stadium and go find our seats and low and behold our friends got us tickets in the season ticket holder section! We were 28 rows back from the field! I could barely contain myself. There stood David Garrard, Mike Sims-Walker, Chris Johnson, Torry Holt, Josh Scobee... player after player walk by, warming up right in front of me! It was going to be a beautiful day.

If it wasn't enough that we were at an NFL game, it also turned out to be an awesome game for the Jags. David Garrard had one of the best games of his career completeing 27 of 32 passes and we got to see Torry Holt make it into the top 10 in the NFl for most running yards with a single team. Jags ended up winning and I must say that I am now a Jags fan (even if that was their only good game of the season...)

So the game was over and as we were walking out of the stadium we decided to go and wait at a spot in the gates where the players sometimes come out of to walk to their cars. We wanted to get some autographs and see if we could get any pictures so we waited right outside of this gate to see if we'd see anyone. And boy did we! Soon pretty much the entire Jags team was walking out one by one and most all were giving autographs. So, with a 'little' nudge from my mother I jumped in the crowd and started getting autographs and talking with as many players as I could. Usually this would not be something I would do. I'm not exactly very outgoing in this area but after a few minutes I had the hang of it and even had a few conversations with some of the players! Torry Holt had a black eye so I told him I hope it got better and I told one guy that he smelled good?? I don't know why but he did so I guess I kist figured I'd tell him so. ha. He just kind of laughed and said thanks and I moved on to the next guy coming out.

Needless to say, that was an incredible first NFL experience. I had so much fun and was once again so thankful for yet another blessing that we recieved on the trip.

Mayo News- Day 5

Saturday had finally come!! At this point we had been to Mayo every day since Tuesday so now we were finally going to get to chill. So what do you do when you have a free day in Florida when the sun is shining??… Why you go to the beach of course!! And that is exactly what we did. We decided to sleep in just a little and then wake up and head to the ocean for the first time of the trip.
So we made our plan for the day and unfortunately, it was not the right plan. We put on shorts and t-shirts and were going to head to the beach for a few hours and then come back to watch some football, however, we got to the beach and immediately wished we had packed up for the day. It was beautiful!! It was our first time to the beach in a few years so that ‘first look at the ocean feeling’ was overwhelming. None of us talked for a while when we first stepped out on to the sand, we just walked around and stood in the water, soaking up the beauty of God’s creation. And what a welcomed break it was from the hospital walls!!
We didn’t want to leave but the longer we stayed without our bathing suits and beach chairs the more we regretted our decision. So we left to head back to watch some football. (Which I must say, not too terrible of a tradeoff : ) As we drove down Beach Front Boulevard we were in awe of the ocean side mansions and thoughts of what life would be like to live in one of them…ha. So although it would’ve been better to have stayed at the beach for the whole day it was still a good break!
So far I think I’ve kind of made it sound like all we had been doing was waking up, going to the hospital, and coming back to have dinner and go to bed, but that is not true. I just haven’t been relaying all of the non-medical details for efficiency’s sake, but I do want to give you an accurate picture of what the whole trip was like…
Most every night up till this point we had either eaten dinner with the family or been out to eat. One night we even went downtown to eat at our friend’s parent’s condo. They took us up to the 31st floor and we got to look out on to the river and all of downtown Jacksonville just as the sun was setting. It was breath taking. (And the wind was blowing just enough to make my hair flutter behind me, ha, and that always makes me feel like I’m in a movie or something. Goofy I know but it just has that effect : )
We had also been to the Town Center to shop and eat at Maggiano’s and P.F. Changs. For you Louisville Folks reading this, the Town Center is like the Summit on steroids times 10! It is beautiful and has every store you could think of and lots of restaurants as well. There is even one section that’s full of all the really fancy stores and it looks like you’re walking through Hollywood, especially at night when all the lights come on. The landscaping was also phenomenal. If you live in Florida I would imagine that palm trees don’t really have any mood altering effects on you but being from Kentucky and seeing as the only time I see palm trees is when they are a party decoration, I felt rather festive as we walked around and checked out all the beautiful stores. It was like the whole atmosphere was building up this excitement in me. Every time I stopped to look around I just couldn’t believe I was actually there! And the more I thought about it the more I was convincing myself that maybe my life really was a movie! Ha. It was all picture perfect… and it was that persistent thought that God kept using to lead me back to Him throughout the trip. He kept reminding me that He is the perfect one and He made the ‘picture perfect’ way for me to go to Mayo as well as get to hang out with my parents and amazing friends in this beautiful city. There is no other way that all this was falling into place but by the grace of God.
So if my life is a movie then this blog is like the narration I suppose, and here we approaching the climax of the story. Well it might be, or maybe we are coming to the grand finale?? I don’t know but I do know God can see the whole picture and that’s all that matters. Dr. Picco was acting as the quarterback of my team of doctors but ultimately God is the quarterback of my team and He is calling the shots. That visual became very real to me and when it truly sunk in I was overwhelmed all over again by God’s goodness. I know I’ve said it before but it is so true! GOD IS GOOD.

My view every morning...

This is the house we stayed in. It's a rennovated old carriage house.

This is the place where I blogged... simply gorgeous. I felt like I was

getting better just by staying outside in the lovely weather!

Mayo News- Day 4

Finally we got to sleep in!! ha. We didn’t have to be at the doctors until 8:20! Not the usual ‘sleeping in’ time but it was better than having to wake up before 6. Of course it wasn’t helping that we were staying up till midnight or later every night but God was also working through our relationship with the family we were staying with. They were such a blessing to us. More than words could ever say.
So the skin test was the first part of the day. They injected 3 spots in my arms, one on the left and two on the right. They said to come back on Monday to get them read and they would be looking for a raised bump and itchiness from at least one of the areas. It only took about 5 minutes and then we were off to get the CT scan and CT enterography.
This was the part I was excited about. I had had a CT scan before but the CT enterography is a new kind of test and Mayo Jacksonville is one of the only hospitals in the world that has the technology for it! And I just ‘happened’ to be there where it was... God is good! The test is used to look into the small intestine because you cannot see the whole small intestine through a colonoscopy. So before this machine was invented the only other way to see it was to swallow a capsule video camera but this was only useful in seeing what the walls of the bowel looked like but you couldn’t tell if there was any inflammation or not. The new CT enterography however, takes pictures of your body in slices and then uses software to put the pictures together to create a 3-D picture or your insides. It’s pretty amazing.
Anyway, we had looked up what the test was exactly and it sounded pretty harmless. (I was just excited I didn’t have to go through another colonoscopy! Ha.) We went back to the waiting area and then the nurses called me back to start an IV for the contrast. The contrast is basically a liquid they pump into you really quickly that makes your insides kind of ‘glow in the dark’ so the machine can pick them up when it takes pictures. I was very excited when they said they were going to start an IV because that meant I didn’t have to drink the contrast!!... or so I thought. Turns out I was dead wrong. I now had an IV and the nurse said I was going to have to drink something as well :(
I mistakenly asked the nurse if it was nasty, to which she looked at me with a face that said “Are you serious?,” and then replied, “Honey, it’s awful. It’s supposed to be blueberry but it ain’t blueberry. That’s for sure.” Why she said this I do not know but I then began to fall apart. This does not usually happen to me except for when I’ve had a long round of doctor visits so I guess I was due for a good breakdown. My eyes began to water and I could feel my stomach starting to churn. It knew what was coming.
I had drunk a barium shake before and it was absolutely terrible. It took me forever to drink the 16 ounces of chalky, chunky, strawberry-banana nastiness and I fought the whole time to keep it down. I hate, loathe, and completely despise drinking anything that is not pleasant but if I had to I would do it again. So I immediately started working up the nerve to go through it all again. There aren’t too many things I can’t just suck up and get through but this was certainly one of them.
I had already changed into the hospital gown so I was freezing as I walked back out to sit with my parents again in the waiting area. The nurse then came out with a warm blanket and the dreaded blueberry concoction. To my complete horror it was not in a 16 ounce bottle but a 20 ounce cup!! I know 4 ounces might not seem like a big deal but for me it was just one more blow to my ‘do it to it’ attitude and it was about to be the final blow. She gave me the straw and I looked down into the cup. The liquid was a cloudy clear color, looked like a watered down syrup consistency, and smelled like lip smackers chap stick. I gagged.
Mom took one look at the cup and knew I was falling apart inside so she immediately started texting everyone asking for prayer :) The nurse was walking away and I was just beginning to psyche myself back up again when she turned back around and said, “I’ll bring you the second glass in 15 minutes and then the third 15 minutes after that ok honey.” She smiled and walked away and I thought I was going to die.
Luckily, I hadn’t drunk too much liquid that morning so I actually got the first glass down ok. I took my time and avoided as many taste buds as possible. Then came the second glass and my stomach had decided it had had enough. With every gulp it threatened to heave so I stared at the ceiling and tried to think about anything other than what I was doing. Suddenly the second 15 minutes were up and I hadn’t even drunk half of the glass!! I was so nauseous and scared that I would throw up and have to start over. Then a miracle happened. The nurse said I was small enough to only have to drink 2 glasses!! I was so relieved that I thought I was going to cry for real this time. Ha. She gave me a few more minutes and then took me back to begin the scan. Hallelujah that was over! So thank you to everyone who prayed for me during that time. I know I couldn’t have made it through without it!
The actual scan was the easy part. I always start to fall asleep lying on the table before I go through the tube until they inject the contrast through the IV. Everything is fine at first then you suddenly get a metallic taste in your mouth and then your whole body gets warm. That part is fine but then it hits. You get a funny sensation like you have to pee real bad and then you get really warm. It’s so embarrassing because it feels just like you’ve wet yourself all over the table! It’s the most awful feeling and even though you know it’s not real it just feels terrible. But that only lasted for a few minutes and then it was done! The test was over and I was free to go for a while.
Next was the consultation with Dr. Garland, my pulmonologist. Long and short of that visit was that he didn’t see any unusual scarring or problems with my lungs so he decided to stand by what he had originally said. If Dr. Picco decided that imuran was going to be the only medicine that would work for me then he didn’t want to keep me from that opportunity. So now we had the all clear for imuran from the pulmonologist and hematologist. Now on to infections disease doc and cardiovascular doc!!

Mayo News- Day 3

By day three the three of us were still exhausted. We were getting up to go to the clinic early every morning, staying at the hospital all day long, leaving and running errands, and getting back to the house just in time for dinner with the family we are staying with or other friends here in the city. Basically we were getting to bed super late (more so by choice) and waking up super early (not by choice at all J. At any rate, day three was the pulmonology consult (lung doctor).
We didn’t actually have an appointment with Dr. Garland, we were on stand by. That meant we had to be at the hospital by 7:30 to just wait around for a cancellation or no show. So we got there early, checked in, and fell asleep in the waiting room. Ha. We had waited for about 2 hours when a nurse came and told us that we had an 11:00 appointment!! We had been praying all morning that we would get in and God was so good to let that happen. If no one had cancelled that day then we would have had to come back every day at 7:30 to wait to get in but praise God, we got in the first day.
The purpose of seeing a pulmonologist was to check on the status of my lungs and risk of developing an infection or pneumonia. They need to know how easily I could get an infection because of the drug, imuran, they want to put me on for ulcerative colitis. It would suppress my immune system and make it easier for me to develop an infection and if my lungs already looked bad before the drug then they would rule that out as an option. Anyway, that’s why I was seeing Dr. Garland.
Our consultation with him went really well, just the same as the others. We talked about my lung history and the numerous cases of pneumonia I have had. Ha. He said my x-rays looked good. There was a bit of scarring in both lungs from an abcess and from my lung collapsing at birth but it was nothing significant. He then explained some of the risks of the imuran and what his recommendation would be as far as whether or not the risk of infection would be worth how much it would help my colon. It all boiled down to the fact that if imuran was going to be the only medicine that would work for me then he didn’t want to keep me from that opportunity as long as I wasn’t at super high risk for infection. He ordered a CT scan of my lungs to check their condition in more detail and then he would decide yay or nay on imuran.
He also then ordered a PPD skin test to see if I would react to different infections if I was exposed to them. The idea behind this is to make sure I react for sure and didn’t get a false negative on my TB skin test. When you have a TB test they inject a small amount of the infection underneath your skin and then check it in a few days to see if you reacted to it or not. If you have had your TB shots then you shouldn’t react to it so it was a good thing that I didn’t react but what we didn’t know is that you can be anergic. That means that you don’t react to anything so that’s how you could get a false negative. So to check and make sure you aren’t anergic they inject 3 more infections underneath your skin, some of which you should react to. So Friday was to be the big day of testing!!

Mayo News- Day 2

Day 2:
Day 1 was such a whirlwind and we were so exhausted that we didn’t really get to take in everything around us. Although Day 2 was still an early, early morning we had gotten a little more sleep and that certainly helped! (I don’t know how we even focused the first day but by the grace of God. He knew we needed to be paying attention and we could almost feel His energy come through us when we needed it most!)
So day 2 began with a hematology consultation (blood doctor). We waited for just a few minutes and then again a nurse called us back right on schedule :) Dr. Mathew was a young doctor, a fellow actually which means he is a doctor but he is mentoring under a specialist in order to become one himself. We did the same sort of thing with him as we did with Dr. Picco as far as just going through my history and getting all the needed information together. He was a lot more personable but that’s probably just because he was younger. Despite his age, he seemed very knowledgeable about most everything we were talking about and could effectively communicate very well. And even if he didn’t know everything he knew exactly who to talk to and how to find out whatever we wanted to know. Our consultation with him lasted for a solid hour again and then he went to get his mentor who could answer more questions for us. He said we weren’t going to be disappointed.
We waited for a while and then Dr. Mathew returned with Dr. Rivera. He started talking the moment he walked in and didn’t stop until he left another hour later. I was so impressed with him!! He knew our questions before we even asked them and answered things we didn’t think to ask. He shared with us more options of medicine and information about current information that opened up a whole new world to me. He was so thorough and covered everything. We left so encouraged and I was so pumped up! Dr. Mathew walked us out and said, “I told you, you wouldn’t be disappointed.” And we certainly weren’t.
Everything about the visit just seemed to confirm the theme of this whole blog. From the moment my doctor at home told us the bad news about my colon I heard God whisper, it’s not the end of the line, and Mayo was saying the same thing! Because of outside influences, my colon may not be as bad as what it looked like in August. With close monitoring different and better medicines may now be an option for me. Because of state of the art machinery that is nowhere else in the country they can do the best testing possible to see more than anyone else can!! No one has proclaimed a full healing for me yet (although I am still fully believing that it will happen) but the news is still good. There is hope and more yet to be done.

After we left Mayo we were so excited and super hungry so off we went in search of good food. We passed several places and weren't fully convinced that they would be sufficient for our celebration of good news and then we saw the sign. My eyes fell upon the most beautiful combination of words as the angels began to sing in chorus... P.F. Changs. Man oh man, God is good. We ate.

Mayo News- Day 1

(First, sorry this has taken so long to post! We have been without internet in our house and have been super busy outside of that so forgive me if things are a bit out of context but hopefully it will make some sense :) Also, I will post about Solomon Wickey soon too. It's just been so hectic lately I haven't had the time!!)
We have been in Florida since last Monday evening and have been to the doctor every day starting with Tuesday :) Its been early days and late nights every day but God has certainly been showing us His favor!
The blessings began even before the first doctor visit and haven’t stopped since. We are staying in the guest house of some new friends but as soon as we met they instantly felt like old friends. Don’t you love it when God places those people in your life?! Just knowing we have our own place to stay and friends to come home to each day has taken so much stress away and almost makes it feel like a vacation for a few hours each day. On top of that, Jacksonville is such a beautiful city! The weather has been high 70s and low 80s and absolutely ideal. In fact, I’m here writing while sitting on a large wooden swing hung from a gigantic old live oak that’s cloaked with Spanish moss. It’s mid morning and the suns rays are streaming through the branches in that magical way that makes you wonder why you ever stay inside. It’s a little piece of heaven and I’m soaking in every minute! Cloudless skies, sand, and Spanish moss…life is good! Ha.
So we arrived Monday evening and were beyond exhausted from the travel. It was so nice to curl up in a bed under warm blankets until I realized that I was only going to be enjoying this for about 4 hours… none the less, exhaustion soon took over and we all slept like a rock until the alarm went off. Seeing as the devil uses the same ol tricks to attack when you’re in God’s will, it was no surprise that he started by trying to make the morning as miserable as possible. I woke up with a fever, an incredibly achey body, and a stomach that was ready to heave at any moment. I got ready as quickly as I could but I honestly didn’t know if I was going to be able to make it or not. I felt terrible but after praying and asking God to remove this attack I started to feel better and better until all that remained was exhaustion. I could deal with that so off we went!
Since we had to be at the clinic so early we couldn’t really see what the campus looked like but after seeing the lit up fountain close to our building I guessed the whole place was going to be even prettier than the virtual tour! Ha. We pulled up to valet parking and then took our first steps into the Mayo Clinic. The facility looked just as we expected and there were few people there so early in the morning but when mom and I looked at one man we saw something we did not expect. This man looked so familiar, in fact we knew him…he used to go to our church!! It was the oddest feeling because here we are in Florida at a huge clinic and the first person we see is someone we know! Ha. We never actually got to speak to him but it was just a little more confirmation that we are in the right place.
Once we registered and confirmed my appointments we went up to the waiting room to see the gastro doctor first. Once we had checked in and sat down I started to realize that everything about this place was more like an airport than a hospital! The waiting rooms were huge, the check in looked like we should be checking baggage, there were ushers in uniform, and we had a ‘flight schedule’ printed out for my appointments. Only difference was everything was being followed exactly according to plan with no delays! We waited for just a few short minutes and then went back to have the first consultation of our Mayo experience.
Dr. Picco was the first doctor I saw because Ulcerative Colitis is the root reason for me being here. Most of what we talked about was my medical history so he could get to know my story and the whole consultation lasted over an hour! Ha, but it was wonderful. No rush, it was thorough in talking through everything, learning about possible new options as far as medicine…it was phenomenal! Dr. Picco is all business and he certainly knows what he’s talking about and is passionate about covering every aspect of the patient he is working with. I feel very comfortable and thankful to have him as my lead doctor.
With the way Mayo works you usually see more than one type of doctor. In my case I am primarily here to see a gastroenterologist but because of other health issues that are involved I am also now going to see a pulmonologist, hematologist, infectious disease doctor, and cardiovascular doctor. Piccco’s plan for me is to gather all the information about my health situation from the other doctors so that he can form a plan that won’t overlook any potential complications. Dr. Picco is considered to be the ‘quarterback’ of my team of doctors and we have come to see that he is greatly respected by everyone.
So, today’s orders were Dr. Picco, consultation, blood work, and chest x-ray, but now day one is finished and it’s back to the house to SLEEP!! Finally :)