Adventures at the Mayo Clinic

This is a statue titled "Man and Freedom" It is a symbol that the Mayo is known for and when I came to the Mayo before it was on the outside of the buiding, now it is in the main lobby.

This has been my third time to come to the Mayo Clinic. The first was in 1984 when I was 10, I was so excited! I would be traveling and I would be the center of attention, how fun! My cardiologist and a cardiac surgeon came to watch my surgery so they could start doing the fontan at PCMC. I had my original Fontan operation and than 3 days later I went back into surgery to have some veins closed that was mixing up my blue and red blood. I didn't like the Mayo anymore, a couple of boys that had had the fontan at the same time that I did both passed away. I was very confused and scared, I often think of that little girl as a different person and I want to help her from the pain that she went through.

The second time I came in 1988 when I was 13 years old, much less excited. I came for a fontan repair, my second repair. It was in January so it was very cold and miserable. after 5 1/2 weeks in the hosital I was very excited to return home.

It has been a week since Quintin my Mom and I flew into Minneapolis and drove to Rochester my third time. people always say to me that I'm a pro and It must be easier the more I do it. They could not be more wrong. It is so much harder because now I know what recovery and tests are like. However, it is much easier to understand the goodness of the Lord and to believe in miracles.

I couldn't believe the drive, it was all farmlands and corn fields as far as the eye could see, Americana at its best! We are staying at a family that shares our same religion so it is easier for them to understand the mormon "lingo". They are so kind and have the 3 cutest little girls. The father is a Dr so he understand the medical "lingo". They live on a beautiful 2 acre land that has cornfields and rolling green hills that you can see from their ginormous windows.

Monday was a 10 1/2 hour day full of the regular cardio tests, such as, blood tests, a chest x-ray, an ekg, an echocardiogram, an excercise test and in between all of that I saw the Tx cadiologist, a very cool and educated Dr. Clavell. He seemed very hopeful just from seeing my past tests and seeing me. However I still had many Dr's to see.

I always have to be silly, this is an Auguste Rodin statue and of course me being Holly.

Tuesday was a non-test day. I saw a wonderful, sweet Dr. Grogan who is a Adult Congenital cardiologist, the kind that usually specialize in my type of heart problem. We started to tell her what Dr. Clavell had told us the day before but she had already talked to him and to the GI Docs (liver). It is amazing how much they constantly are consulting with each other, that makes me more comfortable. One of appointments of the day was with the Tx surgeon. Surgeons are a different kind of people, usually they are very blunt and they don't have a great bedside manner. Dr Dearani was no different. He came in still dressed in his surgical gear and was checking his pager every couple of minutes. He basically said that it would be a good thing if the liver didn't need to be replaced but if there are a lot of extra veins (shunts) in my lungs than a lung translant would not be able to be done and my lungs may not be healthy enough to do just a heart transplant. That night was not a good night for us.

Wednesday was when I saw the liver Dr. His PA came in first, not a totally friendly guy but I still liked him, he drew pictures of a liver and what it consists of, the veins and what not. The Dr. came in and basically said the same thing. He said that they will use the rest of the week to do more liver testing (remember that my original appointments were for Monday and Tuesday only but we scheduled 10 a ten day trip because they like to test you head to toe). We then went to the transplant cardiologist again so he could tell us the same thing and that we might have to extend our trip even more than the original 10 days.

This is a view from the 18th floor of the Gonda Building looking out to Peace Plaza and a bit further out is a mall that has the Medical University of Minnesota on the top 2 floors of a 4 story building.

The Mayo consists of so many buildings I can't count them all unless I really sit down and think about it but my brain isn't funtioning very well so I won't count. When I say that I go from one appointment to the next usually that means two buildings down and 19 floors up or it could mean taking a shuttle out to St Marys Hospital about a mile away, or it could be the same building different floor. I am so thankful for a wheelchair. The main three buildings that are connected with pedestrian subways or skyways (for those cold months) are the Mayo, the Gonda, and the Rochester Methodist hospital (Charlton). I have seen so many different people, muslims, a sheik, a blind mentally disabled man playing the piano, bald cancer patients and that is just the doctors! (just kidding) It is such an amazing place filled with hope and a shared togetherness.

The history is amazing as well THE MAYO CLINIC was founded by a man in the civil war, his two sons and a nun. I get so excited when I find that the Dr that invented anticouagulants did it at the Mayo and he was William Mayo's PA. Just cool little things that make me feel so honored to be a part of this facility.

OK back to my schedule, Thursday I had to have a paracentisis, which is when they take fluid out of your abdomin. That hurt! They numbed me up but not all the way in, when they poked a straw through my muscle wall I shouted out and I felt dumb cause I have never done that. It was over really fast so I was glad to go onto the next event. I met with the sweet adult cardiologist again and she was telling me that their would be other options if I wasn't able to have a transplant, I scoffed in my head and thought what are you talking about woman, I will have this transplant. My Dad has tried to prepare me for what would happen if I couldn't have the Tx and believe me I have thought about it.....like 600 times a day but I'm trying to go by the words "Expect the worst and hope for the best" So no matter how things turn out it's better than the worse thing that could happen, right? I'm so rambling right now. Anyway, while we were leaving my mom asked what my chances of getting a tx were and the Dr said that it doesn't look promising. Pfft I'll show her.

Friday we woke up at 4:30 am so I could get to St. Marys by 5:30 for a liver catheterization and a liver biopsy. My nurses were the sweetest girls ever, actually I havn't found anyone that I haven't liked here.

My cute nurses on the day of my liver cath and biopsy

I went into surgery with just some Versed so that I would still be slightly awake. Versed is a wonderful drug that makes you sleepy relaxed and lets you forget everything that happened during surgery. I will just tell you what I do remember. I was wheeled in and started talking a lot like I do when I get nervous. They were going through my jugular and after about 5 minutes of prepping me my eyes started to blur a little and I knew they had given me the Versed. They built a little tent around my head to get to my neck and make it a bit more sterilized, I was talking to the nurse, felt a little sting of linocaine (numbing me up) and then I woke up in recovery.

My neck from 5 days after the liver cath, it really highlights my previous scars.

The Dr told me that he measured the pressures but couldn't get to the liver to do the biopsy because of all my weird squiggly veins. However he could do a regular liver biopsy straight to my liver through my side right now because they have a free lab handy. I was drugged up and I said yes, do it now. Melanie pointed out when I told her this story that he could have asked me "maam we have some free time so we would like to do an experimental brain surgery if that's ok?" and I still would have said Yes, let's do it! I remember pressure of the needle moving around but that's it. I went to my next appointment a couple of hours later with just two little regular sized bandages but ached all over.

I went downtown to visit the liver Dr. for the results, he did say that my fluid in my belly looked like it originated from my heart not my liver, that is good news, trust me. He would get the biopsy results in the next 24 hours. We than had to go on the shuttle to St Marys to see another Dr that is a pediatric cardiologist (he actually did a heart cath on me in 1988) He took the first ten minutes of the appointment reading my history while we just stared at him waiting for him to talk. Finally he did and said some of the things that my Dr had said before, things that they could do to sustain me if I can't have a tx. He said if needed he would do a heart cath next Friday.

So all of that weekend I rested, went rolling through a mall (wheelchair remember) and just tried to relax because the Dr's I had seen throughout the whole week were meeting at 7:00 Monday morning to let me know if they could do a tx.

I'm sorry that I haven't written more but all I do is 7-12 hour days at the hospital and then come home and sleep.

I will catch you all up on what is going on this week at a later time. Today I had 6 needles (one arterial, ouch and one that had to go "fishing") so I'm going to go lie on the couch and decompress.

LOVE YOU ALL!! Thanks for the prayers I feel them working and giving me more hope and faith.

Heavenly Father is a genius and I love Him!!

Holly