Day 1 — Mayo Clinic

Well I made it to Rochester, MN this morning with dad and Bernie. We left Hoffman Estates at around 5 a.m. and made it to Minnesota around 10 a.m.

It was a pretty easy drive seeing as how I slept from about 5:30 until 8, so that made the trip go by faster.

But enough about the trip. This post is going to serve two purposes. The first is to give a bit of background as to why I am in Minnesota this week and then the second will tell about the first day here at Mayo.

For those of you that don't know or don't have all the information that has led me to this point, you will want to read the following paragraphs. Everyone else, well, you can read too because it will be beneficial and then get you to the update part.

As most, if not all of you who are reading this, know I have short bowel syndrome. That started when I was a baby and had to have three large surgeries which ended up in me having 40% of my small intestine removed. It is something I have lived with my entire life. It really isn't a problem. I have learned how to manage it and live my life normally.

In addition to the SBS, I also deal with kidney stones. Again, this is something everyone knows. They come at random times and I deal with them and move on. Not a huge deal.

Well, about 4 years ago during a routine follow-up with my kidney doctor it was determined that I was anemic. Basically that just means my blood count or hemoglobin count was low. Average range for an adult is between 13.9 and 17. I was running around 11. It was super low but low enough it needed to be addressed.

The standard treatment is to take some iron supplements and keep an eye on the blood count. Well for the next two years the iron wasn't helping and the blood counts continually started decreasing.

It was at this point that I was referred to a hematologist (doctor that deals with blood) in order to see if there was another problem or another way to treat the problem.

Unfortunately over the last two years none of the 4 doctors I have been dealing with have been able to pinpoint the problem. That includes 5 colonoscopies, tons of blood work, iron infusions (iron injected directly into my vein through IV) and other studies. THe problem wasn't being solved, it was getting worse.

About a year ago is when the blood count really started to create more problems because my count was now down into the low 8s and even down into the 7s. That isn't good. There was a two day period where it took every ounce of my energy to get out of bed. And even after getting out of bed, I had no energy to do anything. I would sit on the couch and watch TV and struggle to get off the couch. I just wanted to sleep basically.

That finally led to me having my first blood transfusion. It was a scary thought at first, but I survived and realized that the transfusion wasn't a big deal and two days after getting blood I was back to normal with my energy level. THe problem was my count was still low.

Since May 2010 (my first blood transfusion) I have had 11 more. I have had 12 total transfusions. Transfusions aren't as dangerous as they once were nearly 15 years ago, but they do carry their own risks and can cause various different problems.

Well in the same time that I have been receiving the transfusions, my blood counts have steadily decreased. Along with the lower counts, my body has been adjusting to the low levels. Whereas when I first had a transfusion I couldn't function at a level around 7.5 and now I am not feeling symptoms or problems until the count is down near 5. That isn't good.

In addition, on April 29th, I was diagnosed with Hepatitis C. The main way to get Hep C is through a blood transfusion or sharing dirty needles through drug use or other ways of having blood to blood contact. Obviously I don't, nor have I ever, done drugs or shared needles with someone so that ruled out that problem. One look at the amount of transfusions and it was pretty easy to come up with a way I got Hep C. Even with Hep C being screened for in ALL donated blood, it still somehow found its way into me. Just one more complication that could have been prevented had a solution been reached.

While I have no issues with any of my doctors and have always felt blesses with the doctors I have seen, I, along with Kayla, my mom, my dad and Bernie and a few other sources, decided that it was time to get beyond just managing the anemia and finally find a reason this is happening.

This is how we ended up contacting the Mayo Clinic here in Rochester, MN. It basically consisted of a phone call and they set me up to see Dr. Wiesner on June 20 (today).

That is the background, or most basic part, of everything that has led me to Mayo. We all kind of felt that the best place to get answers was here. Everything is done within a week's time period as opposed to being strung out over weeks at a time with making doctor appointments. You meet with numerous doctors and have all tests done right away and get answers right away before leaving the clinic.

I won't lie. I was scared leading up to today. My biggest fear was and always has been the unknown. What are we going to find out? What is wrong with me? What is causing me to lose so much blood? I was and still am very confident in coming to Mayo. It was just a scary thing realizing that what I have wrong with me is not a simple fix or so we think as of now.

That said, I want to take this paragraph to say thank you to each and every one of you that have called or written on Facebook or texted or whatever. It has been the things you have all been saying and expressing to me that have kept me positive and strong as I attempt to tackle this issue. I can't begin to say how much every one's comments have meant to me. To know that there is a support system out there thinking about me or praying for me or just taking the time to say good luck, it means the world to me and I truly feel blessed to have you all in my life pulling for me. Now I know that this stuff I am battling isn't life threatening (or at least I haven't been told that yet) but it has been wearing me down mentally and at some points physically. It has taken its toll on me which is the main reason I am at a point where I need answers.

OK. On to Day 1 here at Mayo.

My appointment was at 1245 with Dr. Wiesner. Basically the appointment started with meeting Dr. Hart (a fellow). Before he came into the room he had already went through all of the paperwork I brought which basically talked about everything that has been done up to this point. He had a pretty strong base knowledge of what I have been through from childhood up to this point. He asked a lot of questions to get more background and figure out how I was feeling and what had caused us to get to this point.

We talked with Dr. Hart for about an hour explaining everything that has been going on at which point when he felt he had a clear handle on everything he left to go talk with Dr. Wiesner.

Dr. Wiesner then came into the room and went over his plan of attack for while we are at Mayo.

As far as the Hep C is concerned the doctor isn't sure what he is going to do yet. THere are potential treatments out there for Hep C, but he doesn't know that he wants to use them just yet. He said with the way I presented symptoms with the Hep C, he feels there is a chance that my body is attacking the virus by itself and that is could be out of my system in 4-5 months. He said when your liver numbers are as high as mine were it normally means that my body was taking care of the problem by itself.

So what he did was run a panel of blood work which will tell him where my numbers are at. He said if my numbers came down again that it could mean the virus is being taken care of. If the numbers do drop, he will not treat me. He will let my body do its thing and retest for Hep C in 4-5 months. In 4-5 months he said we will be able to tell if the virus is completely gone or if it is still there at which point it would still be ok to start treatment at that point. So there was some positive news in regards to the Hep C.

For the anemia the plan is a bit more complex. We are guaranteed to be in Minnesota until at least Thursday because I will have testing done for the next three days.

Starting tomorrow at 6 a.m., I am having a balloon assisted endoscopy. What that is is the doctor will knock me out with some drugs and then stick a camera down my throat through my digestive tract into my small bowel. This is a different test because my previous doctors have not looked at my small bowel. It is a challenging organ to evaluate because of where it is located. But these doctors feel that whatever is causing my blood loss/bleeding could very well be originating in my small bowel.

On Wednesday I will have a CT Scan with contrast as well as an ultrasound. The CT scan will allow the doctors to track my digestive system and make sure there is nothing stopping the flow of things traveling and things like that. The ultrasound just gives another look at my system.

On Thursday I am having a Meckel Exam. It is another type of CT Scan but this one uses nuclear medicine in the study. I am still not totally sure what this test is other than a type of CT scan, but I am hopeful it will add to the total picture and give these doctors the information needed to fix me. Or at least get me on the track to being fixed.

Then Thursday afternoon we meet with the doctors once again to get results and diagnosis and potential treatment plans or maybe to find out more tests are needed. Hopefully it is to tell us what is wrong and how to fix it.

My overall thoughts on Mayo are pretty positive. I was very impressed by the overall look of the clinic. It seemed really nice from the outset.

I was very happy with the doctors. They really put my mind at ease after sitting at talking with them for the short time that I did. They seemed extremely knowledgeable and seemed to have a plan of attack to find out what is wrong as opposed to saying what they thought was wrong and then trying to prove that. Their attitude seemed to be wanting to find out what was wrong before saying what they thought was wrong.

It really was a completely different attitude from what I am used to. Again that is not a knock against any of my other doctors. It was just different. It made me feel like we really did make the right choice in coming to Mayo.

While I am not overly enthused or looking forward to a battery of more tests, I do realize it is what needs to be done in order to try and get results. And I came in with the attitude that I was going to do what was necessary or whatever the doctors wanted to do in hopes of curing whatever is going on.

So I guess that is about all I can say for now. It was a long day seeing as how it started at 4 a.m. and it is now 7:30 p.m. I still need to get a shower taken and then try to get some sleep seeing as how I need to be up again tomorrow at 5:30. At least we don't have far to go from our hotel seeing as how the hospital where the procedure will be done is across the street.

So for those of you still reading (yes I know this was long, but then again I am a writer by trade and enjoy typing) I appreciate you following my journey. For those that I can't call and talk to I hope this keeps you informed.

Anyone needing to reach me can call my cell or dad's cell. Can't promise I will answer but I will try.

Again, thank you to everyone for all the awesome words and thoughts. It means the world to me and I will be talking to you all soon.

Love,

Me