A Brief Update...

So it's certainly been a while since I wrote here and I kind of fell off the bus on keeping everyone updated on the Mayo visits but I think that was because I just got depressed or defeated that it was taking so long to get thigns fixed.

But I am happy to say that my trips to Mayo were worth all the time in the car driving and in the hotel rooms and hospitals and all of that because they finally fixed the issue.

After every doctor wouldn't admit that my problem was the internal hemorrhoids, Mayo finally decided to remove them and wouldn't you know it, that solved my blood loss issue.

Since my surgery in September, my blood count as gone up to the 13 range which is about as normal as I would probably get and it has stayed there. I had to have one more series of iron infusions, but since the last one a couple weeks ago I am no longer in need of the iron which means no more weekly trips to the ICU for the infusions.

I haven't felt as good as I have been feeling in about 4+ years.

Now we are on to the next problem which is the Hepatitis C that I was diagnosed with back in April during the time I was getting all of the blood transfusions. In all I had a total of 15 transfusions over a 15 months period. Pretty crazy I know. But I was diagnosed with the Hep C and I am now seeing a specialist to see about treatment to get the Hep C fixed.

Last Thursday I had a liver biopsy which was going to give the doctors the best picture of how bad the Hep C is and maybe give them an idea of just how long I have had it. The docs have said there is a legit chance that I have had this since 1984 when I got my first and only transfusions during all of my stomach issues as a baby. Would seem crazy that I have had it for 27 years from one single transfusion and it went unnoticed for that long, but it is a possibility.

Anyways, today (Friday, Feb. 3) I go to get the results of the biopsy to see where we stand and what the next step is in terms of the treatment plan. Either way when I do decide to start the treatment it is going to be a pretty lengthy process that can last anywhere from 6-11 months. It also won't be much fun for me or those of you that know me according to the doctors because of the side effects and what it may make me feel like.

But one thing at a time and next is seeing the doc this afternoon and getting a better idea of what we are dealing with.

What I do know is that I have come this far getting through everything and this is just one more step along my journey. Ideally it will be the last step. But we shall see.

I plan on keeping this updated and then when ever I do start the treatment I am going to try and do it weekly just to keep everyone up to date on how I am doing.

A final note. To those friends and family that have been hit with some hard news of late or that have been diagnosed with some of their own health issues recently, I just say stay positive. Keep your head up and know that there are lots of people pulling for you and lots of people that love you. From someone who has been through a lot and has felt at times like things would never get better, my best advice is to try and stay as positive as possible. As hard as it may be to be positive, it is going to help you so much. Because the days I felt bad and then had a bad attitude about it were the hardest days. Those were the days it seemed like nothing could go right and made it hard to get through the day. But stay strong. Stay positive. Fight with everything you have and NEVER give up. And certainly don't be afraid to ask others for help. Sometimes we try to be so strong for everyone else and make everyone else feel like we are OK because we want to be, but there is nothing wrong with feeling bad or being scared and telling people. There is nothing wrong with talking to people and just venting just to vent. Cry. Scream. Swear. Punch a door. Stomp your feet. Whatever it is that makes you feel better. Nobody will think any less of you. Sometimes it just feels good to get mad or sad. But when you get it out, allow yourself to feel good again and have that positive attitude again.

I have come a long way over the last 4 years and I have seen myself when I felt like I was at rock bottom with my health and my attitude. I was mentally, physically and emotionally so drained that it was tough to see the positives, but I see where I am now and know that everything I put myself through and everything I fought for was all worth it.

Stay strong. And fight on.

Till next time.

Mayo Trip 3 - Day 1 or 2

Well by now if you are reading this you have most likely already read on Facebook that my test went well this morning.

We arrived in Rochester yesterday (Monday) in order for me to take the preparation for the colonoscopy I had to have this morning. I won't bore you with any details of that other than the prep was awful tasting. It is this nasty bitterness that you have to drink four glasses of. The first two glasses go down somewhat easily even though they don't taste very good. The third glass is a struggle because by now your tastebuds are telling you this stuff isn't any good. The fourth glass is a joke. The gag reflex has kicked in and doesn't want you swallowing this crap anymore. That is really the best way I can describe the taste.

So I had to do that at 6 p.m. and then basically sit around the hotel room. I am still not sure what was more difficult, the drinking of the nastiness or the not being able to eat solid food all day. I woke up this morning for the test feeling like my stomach was going to eat itself because I was straight up depriving it of food.

But after going to bed, I had to wake up at 3 a.m. in order to do a second round of the prep stuff. Yes, another 4 glasses of the nastiness at 3 a.m. I was struggling just to keep my eyes open long enough to drink the stuff and it was even harder to get down the second time.

Woke up at 5:30 a.m. to head over to the hospital for the procedure which went well.

The only bad thing was the doctor was unable to get as far as he wanted to into my small intestine due to the way it was attached when I was a baby after having my surgery. Where they connected the intestines it is in the shape of an L which limited the doctor from getting the camera through there.

Basically what he said was the camera is flexible, but not flexible enough to make it easily through the part that was connected which had its own set of potential problems. By forcing his way through he would risk tearing my bowel which is not something we wanted to deal with. I won't go into detail of what would have happened, but just know it would not have been good and my trip would have been extended for quite some time. So thankfully we had a doctor that knew what he was doing and he decided it wasn't worth the risk and he stopped when he couldn't get any further.

But what he did see he said looked normal and healthy. Which means that my anemia is not being caused by anything in my digestive tract. If you want more details of what was found (and nothing bad was found) just ask me. I don't know that everyone reading this wants to know. LOL. But I have no problem sharing/explaining. Just ask.

After the test I was in recovery for about 40 minutes just to wake up and then back to my room where I got some chicken noodle soup and water and I was on my way.

I was then finally able to get some food which was splendid and that was the end of the day.

Now on Wednesday we go back to see the GI doctor that we met the first time we were here and the one that ordered the colonoscopy. He hopefully will have something to tell us that can get us another step on the road to figuring this out. He will have results from the hematologist as far as the blood work she took.

Remember she was saying she thought I had red cell breakdown somewhere along the process of my red blood cells becoming red blood cells. She had a few ideas of what could be causing the anemia and severe blood loss, and she took 14 vials of blood last time I was here. So tomorrow we get to hear those results and see if they found the cause and maybe a treatment. I am not getting my hopes up, but I am hopeful that we will continue to make progress.

In addition to seeing the GI doc we are also seeing a Nephrologist for my kidney stones. After seeing the Urologist last trip he suggested seeing the nephrologist so we decided while I was here I may as well get everything I have looked at and see if there is something we are missing somewhere.

In all it will just be a bunch of office visits with doctors. I am not sure what else they will have me do if anything, but we will find out tomorrow.

That is it from here for now. Hope this has been helpful in letting you know a little bit of what is going on here with me. While I am happy to be at a place that i feel is making a difference, I am getting tired of having to come up here. I am hoping they figure it out and this could be my last trip up here. I don't like being away from Kayla for days at a time and my bed is much more comfortable than the hotel bed. But at least I have the company of Dad and Bernie. They keep things fun around here. They are good at keeping my spirits up and taking care of me.

They are just another piece of the awesome support I have. I know they are my dad and stepmom so they are supposed to be supportive, but between them and my mom and Kayla and Kayla's family and the rest of my family and all my friends (which all of you are considered my family) you guys certainly make this easier to handle. Cause I won't lie, it hasn't been easy. It has been difficult, but I have kept a positive attitude and kept my eye on the prize or the light at the end of the tunnel. I know there is a light there. I know there is an end to this journey somewhere. And there have been times when it would have been easy to stop traveling the road and give up, but I keep fighting along and know that we will get there soon enough.

So again, as I have said so many times in these blogs and I will continue to say as long as I write them and talk to those of you reading, THANK YOU!! I can't really put it into any other words that sum up my feelings other than thank you and it means the world to have the support.

I hope this finds you all well!!

Until tomorrow...

Mayo Trip 2 - Day 1

As most of you know I made a return trip to the Mayo Clinic today (Tuesday, July 5).

This trip was to see a urologist and a hematologist to see if there was anything going on with my blood loss that tied in to my kidneys or just a problem with my blood completely.

After meeting with the urologist they went through a bunch of CT scans and all my previous blood work to check everything over and determined that they couldn't make a determination without further examination. So it was on to get an MRI for a better look at what was going on with my kidneys.

The urologists were pretty confident though that my kidneys were working like they should and the problem was elsewhere. Either way, it was good to get one more thing looked at and checked off the list.

After the urologist it was on to the hematologist (doctor that studies blood). She was just as nice and helpful as every other doctor we have met here at Mayo. She also had some ideas as to what could be going on.

One thought was that there is a breakdown in my red blood cell process. She said as a body makes red blood cells sometimes it can create antibodies to our own blood causing us to have a breakdown in the process of creating new blood. Hence why my blood count would keep dropping as opposed to increasing as it should be.

She explained it as each blood cell having a protein attached to it and in some cases that protein disappears and then the cell basically gets discarded by the body.

Option two was kind of a two-piece thought. The first part was that my body doesn't know how to use my iron supply correctly which then allows my body to discard iron through my urine. By losing iron it makes me anemic and causes problems.

The second piece of it is that my body doesn't absorb certain vitamins (as we are aware because of my short bowel syndrome) and therefore the iron isn't being used properly. She said there are numerous vitamins that work with other vitamins and parts of the body to make sure iron and other things are used properly or to the fullest extent.

Each of these things are tested through blood work which I will be having done Wednesday morning. Fixes for each of the problems seemed easy enough as she said it would be medicine through an IV. That is easy enough. But first things first, we need to diagnose the problem.

The positive thing was that each doctor once again had the attitude of finding a problem and then curing it. Each doctor has said there is something there that needs to be diagnosed and I get the feeling that they won't stop seeing me until the diagnose the problem and fix it.

So it was a pretty positive day overall. I feel good with what took place. No answers but seemed like we took a pretty good step in the right direction.

I have some more tests tomorrow and then we will see what happens after that.

I do know that I am coming back July 25-27 for sure. That visit will include the balloon assisted colonoscopy as well as more blood work and four doctor appointments. It will be a busy three days, but I am confident and hopeful that it will be a visit that may finally get me on the track to recovery and opposed to still on the track of searching for some answers.

For those of you still reading I say thank you for doing so and I hope this was helpful. And if you want to know anything feel free to ask me via Facebook or email me at barsott1@yahoo.com or call me. I don't mind talking about it.

I also once again say Thanks to everyone for keeping me in your thoughts and sending your best wishes. It is awesome. That is all I can say.

Until tomorrow.

Day 3 and 4 plus overall recap

So I know this is overdue because I was busy and it turned into a long week.

I will start with the recap first so people don't have to read everything if they don't want to.

I am home now. We arrived back in Hoffman Estates last night around 8:15 p.m.

After meeting with Dr. Hart again yesterday it was determined that the tests they ran were not the source of the bleeding. They were unable to pinpoint the bleeding up to this point.There is a small portion of my small intestine that has still not been seen so we scheduled a return visit for July 26 to have a balloon assisted colonoscopy done. So yes I am going back and no they haven't given up just yet.

In addition to going back for the colonoscopy, I will be returning on July 5 for a consult with a urologist and hopefully a hematologist as well. They feel that the next doctors to speak to would be those doctors in order to take next step in case nothing shows up on final colonoscopy.

So it wasn't the fix we were hoping for. I know I seemed a bit naive to think they would solve this in a week. Nothing health wise has ever been easy for me and this is no exception.

The positive to all of this is they were able to rule out 4 or 5 different things. I had numerous tests done that I had never had before and things talked about that had never been mentioned before. It just makes for a longer journey than we had all hoped for.

Now onto the days.

Day 3 was very uneventful. I had two tests done. One was a CT Enterography and the other was an ultrasound. The only bad part was having to drink 3 bottles of Barium Sulfate for the Ct scan. That stuff was straight up terrible. I mean not even remotely good tasting. The kicked is each bottle had to be forced down in 15 minutes. But at least it didn't allow me to milk it.

Once the nasty stuff was down they ran the test which honestly lasted all of 5 minutes. I spent more than an hour prepping for 5 minutes of pictures. It was a fun time.

Then it was on to the ultrasound. The ultrasound was nothing special. Just me sitting there while the tech took pictures from the left side of my abdomen to the center and then to the right side. Again, nothing special. That was the end of the day. My easiest of the three days so far even with drinking the Barium.

Day 4 was pretty easy as well.

I had the Meckel's test at 8 a.m. This test was specific to see if I had Meckel's disease which would have explained the bleeding had it come back positive. But as I said earlier it didn't.

The test started with me getting an IV put in and being pre-treated with IV Zantac. They needed to eliminate most of my stomach acids for the exam. Once the IV drip was done over the 30 minutes I had to sit in the waiting room for an hour. Then I went back into the room where the test was done and they injected me with a radioactive isotope.

I then had to sit on a table for 30 minutes while the test was ran. It was pretty uneventful. My arms had to be above my head which was the hardest part of the whole thing. Keeping them above my head on this table for 30 minutes. Safe to say both had pretty much fallen asleep by time the test was done.

Then it was on to the doctor's appointment at 11:30 a.m.

He ruled out a bunch of things from the tests that they were looking for.

He said there was one possibility which would be very hard to diagnose. He said there are arteries underneath your stomach and intestine wall which can sometimes spasm and shoot blood into the digestive tract.

The problem is that unless a test is being done inside where they see the bleeding as its happening they can almost never tell. It would have to be happening when they are doing a colonoscopy or something along those lines. BUt he said that was a possibility.

He said in all they have looked at about 85% of my digestive tract from the endoscopy and colonoscopy (which was done while I was under anesthesia for the endoscopy) but there is still a portion of small intestine that has yet to be seen which is why they want to do this colonoscopy with the balloons.

In all it was a positive 4 days. I won't lie about that. It is frustrating to still not know but at least we do know a few things that it isn't.

I was continually impressed by this place each day. It never failed that whenever we went into a building I was being shocked by just how things were done. Or like when I went for the ultrasound how there were like 45 ultrasound rooms. Everything is so efficient there and done in a timely manner.

I am pretty sure my longest wait time was 15 minutes. And that was really only because we were 15 minutes early to a few tests. I honestly don't think I ever waited more than 10 minutes past any scheduled appointment time. It was amazing.

I have been to numerous hospitals in my time and this place blows them all out of the water.

In addition, the doctors were pretty cool too. I never once got the feeling from the doctors I saw that they had an attitude like "Well, we don't know what is. Thanks for coming." Everything was it wasn't this but let's check this. Let's move on to this possibility. The attitude was constantly let's figure this out and never thanks for coming.

So I am still hopeful that they will find an answer. Whether it is the GI doctors or the urologists or the hematologists, I am confident that they will find out what is going on. It may take some more time and require some more blood transfusions and iron infusions, but for the time being I will handle those and eagerly await my next visits to try and continue to search for answers.

I finish this series of blogs with another thank you to everyone. It was pretty cool to have people FBing me looking for my blog or asking others where my blogs were. I apologize for getting these up late and keeping people waiting after the first two days.

But again I can't express enough just how happy I am and moved I am by the support and encouragement. It truly does mean the world to me and this won't be my final post. I plan to continue to post some blogs and then I will keep the updates coming from my visits to Mayo.

So for the last time this week I say "THANK YOU!!!" to everyone out there. I know I may not have responded to everyone's messages or comments, but bear with me as I plan to write back and make sure everyone knows just how much the well wishes and thoughts and prayer have meant to me.

So I guess it is wait and see for now. Not the results we were all hoping for, but not the end of the journey either. Nobody said this was going to be easy. I guess I just wasn't sure how hard it would be either. But I know with the help and support of everyone I will get to the end of this and hopefully I can get my "Cured by Mayo" T-shirt that I so badly want right now.

We will talk soon.

Sotti

Day 2 — Mayo Clinic

Well Day 2 has come and gone. Yes, I know it is only 4:30 p.m. here but my day with the clinic is over.

Let's just say it was a very long day that started at 2:30 a.m.

There was a really bad storm that came through Rochester last night and at about 2:30 a.m. a bolt of lightning hit something right outside the hotel. It may have even been the hotel it hit, but either way it made the loudest noise which woke up dad, Bernie and myself instantly. No big deal, right? We all laid back down to go back to sleep, but then the fire alarms went off in our room and throughout the hotel.

These aren't your typical fire alarms either. No, they were these obnoxiously loud things that hurt your ears if you stay around the noise too long. Needless to say we ended up heading down to the lobby because it is only smart to vacate the hotel if a fire actually happened. Well, it turned out that the lightning hit something that set off the alarms and fried the breaker. So not only were the alarms going off, but they were going to stay on until maintenance guys could get to the hotel to fix it. This included the fire department not being able to turn them off. So we sat downstairs in the lobby (which didn't have the obnoxious noise) until about 4 a.m. when the hotel was finally able to get the alarms to turn off in the rooms. The alarm was still going off outside out room, but it was at least quiet enough to go back to sleep. They ended up getting all alarms off at about 4:30 a.m.

Well, we had to be up at 5 a.m. anyways to get ready and head over to the hospital where my endoscopy was going to be done. So it was an early morning.

I checked in for the test at 6 a.m. and was taken to my pre-op room at around 6:30 a.m. and was on my way to the pre-op center at 7 a.m.

I say pre-op center because that is exactly what this was. There were about 60 patients in this room spread out somewhat evenly with nurses for each patient. The doctors and anesthesiologists would come and talk to each patient and then by 8 a.m. that room was cleared out because there are 60 operating rooms where they take patients to.

So I was on my way to the operating room for my balloon assisted endoscopy (which is basically them taking a camera and putting it down my throat into my small intestine to exam to see if there was anything that could be causing my blood loss). Thankfully I was completely knocked out, but not after a very different experience.

The nurses and anesthesiologists were having a hard time getting an IV started on me because I dehydrated from cleaning myself out last night for the procedure. So after sticking me somewhere near 10 times and not getting the IV started, they decided to help me relax by giving me Nitrous. I have had Nitrous before, but never like this.

I was about as high as a person could get I think. My whole body tingled and everything went quiet except for the three voices of the doctors and nurses in the room. Then I started to get like panicky and paranoid and was pretty much wigging out from this Nitrous. Not to mention, I wasn't able to pass out from the gas right away which made it worse. It truly was a feeling that I would be very happy never feeling again. THey finally got the IV started and then gave me some meds which knocked me out in about 3 seconds. That was a good sleep because it was the kind that you don't wake up from.

Dr. Alexander did the procedure, but much like most other things I have had done, he didn't find anything in my small intestine that would be the cause of the bleeding. Now that can be taken two ways. A positive and a negative. Negative because they didn't find anything, but then again positive because they didn't find anything. With my SBS history and missing 40% of my small intestine there has always been a concern that something could one day go wrong with my small gut. So from that standpoint it was a positive because there was nothing wrong.

But it is just one more test that didn't show anything. But it was also one more test that hadn't been done before, so at least they were able to rule something else out.

I woke up around 10 a.m. from the procedure and was back in my original room around 10:30 a.m. where I was given some water and frozen ice to eat before finally being let go around 11:15 a.m.

The only negative from the procedure is my throat is killing me. It hurts to swallow and eat and drink for that matter, but hopefully a good night's rest will help heal it and I will be back to somewhat normal tomorrow.

Dr. Hart called this afternoon to just verify that I knew the results of the test which was pretty cool because it just shows how things are done here.

Tomorrow morning I have a CT Scan with contrast at 9:30 a.m. and an ultrasound at 1:30 p.m.

That is it for tomorrow. At least as of now. I suppose that could change, but that is what is on the schedule for tomorrow.

It has been truly amazing how effective and efficient this place is. Everything goes off my Mayo Clinic number and I think the longest I have had to wait for anything was like 15 minutes. There are sometimes it takes 15 minutes just to sign in to get registered at other hospitals. I have been to many, many hospitals and this place blows them all out of the water. It really is cool.

On a side note, I want to again thank everyone for the Facebook comments and posts and for taking the time to check in on me. I know I said it yesterday, but it really is amazing to have the type of support I have received from all of you.

Well that is it from here in Rochester today. We will just have to wait and see what tomorrow brings.

Hope this finds everyone well!!

Sotti

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