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