Mayo Clinic Update

So, we went to the Mayo Clinic.

Let me tell you – if the rest of the world was run as efficiently as the Mayo Clinic, we’d have world peace.  What an amazing place!

March 14th was our day to meet with Dr. Brian Weinshanker.  I was very excited and incredibly nervous to meet him.  He’s an expert in Neuromyelitis Optica (Devic’s Disease) and he would give us the answers I need.

Unfortunately, the week we were scheduled to go was the busiest week we would have all year.  My middle son had 5 basketball games scheduled.  My youngest son had piano lessons and my daughter had Science Olympiad practices and competition that week.  It was CRAZY and I had to figure out how my mom could get everyone everywhere they needed to be.

I made out a schedule for my mom.  Gave her plenty of contact numbers for those “just in case” situations.  Printed off maps so she would know how to get to the school, McDonald’s and Church (not in that order of course!)  My husband cancelled out his patient load for the week and we were all set to go.

The day before we left, I ironed all of his shirts, all of my blouses, slacks, etc.  Packed up all of our clothes, scrubbed down the bathrooms and got the house ready for my mom to move in.  Despite me being so nervous, we were ready to go!

Many people have been praying for me.  It’s obvious now that I’m sick.  I walk with a limp and I look exhausted.  I sleep through most of the day and I’m thankful for being able to be able to drive and pick up the kids from school.  Once they are home, I lay back down.  My husband is an angel and wants me to rest, but I’ve been feeling so guilty that I’m not holding my own anymore.  Going to Mayo was going to exhaust me further, but hopefully Dr. Weinshanker would have the info I need to make myself feel better.

So, Sunday, March 13th came and my husband and I took off for Rochester, MN.  It was about a 10 hour or so drive and was very beautiful.  We enjoyed every minute of it.  We finally arrived at our hotel the Kahler Grand (http://www.thekahlerhotel.com/).  It was a nice hotel – very clean but also very small.  That didn’t matter – we were there for Mayo and not the hotel and it met our needs.

The Mayo building is where I needed to be at 7:30am on Monday morning.  We decided to explore a bit before turning in for the night. What a neat place!  The Kahler and the Mayo building are connected through a whole underground city with shops, restaurants and galleries.  It was so neat to explore!

Monday morning came and I was incredibly nervous.  Those who know me well know that I suffer from extreme panic attacks and I was very concerned that I would have one while meeting with Dr. Weinshanker.  This appointment was so important to me and I didn’t want to mess it up by being so nervous!  I did my best to keep myself calm and thankfully, my husband knows how to deal with me.  He’s such a good man.

My appointment was at 7:30am on the 8th floor.  We went up there at 7:10 and by 7:30 I was already back in a patient room.  After the nurse took my blood pressure and weight, she told me that Dr. Weinshanker wouldn’t be in until 8:20am.  She offered to let me stay back in a patient room, or wait in the lobby.  We chose to wait in the lobby and went downstairs to the cafeteria to get a quick bite to eat.

By 8:00am we were back upstairs and by 8:10 we were in the patient room again.  8:20 came and Dr. Weinshanker walked right in.  What a kind man!

I was VERY nervous by this time and probably giggled like an idiot.  I was so thankful my husband was there to listen as I just don’t retain information when I’m nervous.  I’m also thankful that we had written down a list of questions and he was able to answer almost all of them.

He looked at my MRI scans of both my spine and my brain, looked at the bloodwork I had done and in a nutshell, he confirmed my earlier diagnosis of Neuromyelitis Optica.  As with all autoimmune diseases, my prognosis is variable.  I felt bad for him as he had to answer many of our questions using that word – variable.  We don’t know how this disease will affect me as every person is different.

What he was able to tell us is that I can exercise with no problems as long as I start slow and build up and listen to my body.  I’m one who tends to overdo things, so he told me to keep that in mind.  He told me to get “as healthy as you can.”  One of my major concerns is that my body will immedately have an attack and I’ll be stranded somewhere.  He told me that that probably will not happen – my symptoms will progress over a few hours to a few days.  That gave me some comfort considering all of the driving I do with my kids.  He put me on 60mg of prednisone for 6-9 months until the Imuran I’m currently on builds up, added bactrim to help me avoid pneumocystis prophylaxis (bad pneunomia), and upped my Imuran to 175mg (I was at 75 mg when I saw him).  Currently, I am at 125mg until my next blood draw sometime this week.

Dr. Weinshanker and my husband did a bunch of medical talk about how to treat me if I have an attack.  I’ll be put on 1g of IV methyl/pred for five days.  If my symptoms don’t improve, then I’ll go on plasmaphoresis.

After we discussed all of this, he said he was done.  Because I’m a confirmed case of NMO due to the IgG antibody being present in my blood, there was no reason for us to do anymore tests.  We were free to go!

After meeting with Dr. Weinshanker, we were both a little shocked that we were done so quickly!  We both had expected to be at the Mayo for a week and here it was – only 10:30am and we were done!  Dr. Wienshanker enrolled me into the Guthy-Jackson foundation blood bank and I still needed to do my blood draw, but other than that – we were done!

We actually spent more time waiting for my insurer to approve my blood draw (Dr. W. also ordered another blood test to rule out other autoimmune diseases) than it did for me to meet with the Dr. himself!  Finally, at around 2pm I was able to do the draw and then we left to go to the Mall of America and then head back home.

My thoughts on Mayo? What a wonderful place.  Dr. W. was so kind and very helpful.  He did not mince words and I appreciated that.  I wish more was known about NMO, but it is what it is.  He gave us the information we needed and a road map to help us fight this disease.  The rest is up to me and God.

Here’s a picture of me and the giant naked man at Mayo:

This describes me to a T (gift idea anyone?).  I found it in one of the shops below the Mayo Clinic:

I wish I would have bought it.  It’s totally me.

Of course, my husband was shshing me and telling me to cut it out.

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This entry was posted in Devic's Disease, I'm a big dork, Neuromyelitis Optica, NMO. Bookmark the permalink.

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