vacation…

So when we finished our last appointment at Mayo Clinic the boys and I had made plans to go to Mt. Rushmore and then come home.   Since we have to be back at Mayo Clinic on Wednesday we decided to just extend our vacation and include Yellowstone Park as well.

We tried to get my husband to join us but he just is too busy with work and school right now.  However, my parents did decide to join us and met us at Mt. Rushmore yesterday.  Today we drove to Jackson, Wyoming and tomorrow we will explore Yellowstone.

Besides the kids and I missing dad/hubby we are having a great time AND a lot of time in the car!!!  I have felt pretty good for most of the trip.  I did amazing at Mt Rushmore and was able to walk all over without any real issues.

I did have an emergency stop on the side of the road in South Dakota but thankfully that is the only one so far.  I had a mild asthma attack last night and was able to get it under control pretty quickly.  I had another one this afternoon and also got hives all over.  This is not an unusual thing to happen to me.  I took an extra Zyrtec and some Benadryl, used my rescue inhaler and am ok now.  I always travel with prednisone on hand and normally would start taking it in the morning with the flare ups I have had, but I will have to check with my dr at Mayo first and make sure that it won’t be a problem.  Taking steroids raises your blood sugar and since I have one day that is nothing but glucose testing I am not sure that it is a good idea to take it.  I definitely don’t want to alter the results.

Looking forward to tomorrow and hoping for a good night sleep tonight.

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Mayo Clinic day 2

This day turned out completely different than I expected, in a good way.  My local endocrinologist wanted me to get an opinion her about the sever hypoglycemia that I have since having the total gastrectomy.  I had already seen the gastroenterologist at Mayo at my visit in April and he did not have any suggestions for me so I did not have a lot of hope for this either.

Dr. Kudva is the endocrinologist that I saw and he was very informative and detailed and also determined to make it easier for me to manage this issue.  I have been having even more problems lately as I am not recognizing the symptoms of hypoglycemia as soon as I was before causing me to not catch it until its super low….upper 20’s to 30’s.  He explained that over time my brain is getting used to this happening every day and basically not sending me the signals that something is wrong until it’s really, really wrong.

He wants to do some further testing but there was no way to get it done the day we were there and of course it was a Friday so we will have to go back and do the tests next week as these as tests that he really does not want me to do locally.

I will also have a continuous glucose monitor (CGM) placed from Mayo for a period of 7 days then send back to them, and he feels that at the very least I will have my own placed after that.  This is something that will be attached to my abdomen and enable me to catch my lows before they become too low.

He would like to start a research study/clinical trial based on my problem.  His thoughts are that my best option would be to have a CGM and whereas a diabetic patient would have an insulin pump with their system, myself and people like me would have a pump that could deliver glucagon.  So….anyone that follows me that may be suffering from the same severe hypoglycemia like I do….this Dr. would really like to start a study on this but would need more patients than just me.

Next, we saw pulmology which I was really anxious about.  With my recent pneumonia and recurring pneumonia that I have struggled with, I have had a lot of imaging done and their have been some varying opinions from different radiologists and physicians.  I won’t go into all the boring details but I was pleasantly surprised to know that my local pulmonologist and internist are doing what needs to be done and there are no changes that they would make at this time.  I do have a couple areas of concern that are going to monitored by CT scans over the next 6-12 months to watch for changes.

Mayo Clinic visit day 1

Today was an early start which honestly sucks for me.  I really am not a fan of getting up early.  I had to be at the clinic for pulmonary function testing that started 7am.  Jacob went with me and Tyler stayed at the hotel to sleep.

It is the most extensive pulmonary testing that I have had and I have had a lot done, especially at National Jewish in Denver.  This time they did extra testing due to the fact that I had a tracheostomy last year and also because of the reconstruction of my diaphragm.  I also had to walk up and down a set of stairs for 3 minutes.  I honestly did not know if I could do that but I did!  Luckily that was after they had given me albuterol.

Next I went and had a chest X-ray done and then to the lab to have blood work done.

After that we went to my thoracic surgery appointment to follow up from my surgery that I had in May.  It was a good appointment.  Everything is healing as it should and seems to be holding.  We reviewed some of my imaging from my last visit and this visit.  I have an area of what they call ground glass opacity measuring about 10mm that they are monitoring.  As far as my imaging goes it “looks pretty good” for what I have been through.  We also discussed some of my ongoing pain issues in my chest.  They feel that I have post thoracotomy syndrome which is common after the surgery that I had last year.  Unfortunately it is not something that will get better, but there are some medications that I can try to see if I can get some relief from it.

Tomorrow we will se endocrinology to see if they have any different ideas to help with my hypoglycemia.  I am not holding out a lot of hope for this as I have already seen the GI dr here at Mayo and have been told that it is pretty much the way it is going to be due to my anatomy.  Who knows, maybe I will be surprised.

After that I will see pulmonary and go over my tests and imaging with them and see what their recommendations are.  There is some question on my imaging that they are trying to determine if there is some type of infectious process or if what they are seeing is fibrosis/scarring.  I have had a fairly large decline in my breathing over the last year and am pretty anxious to see what they have to say if anything.

I sent the boys out on their own again tonight.  I had a blood sugar crash and am pretty tired.  We are all excited to be done with dr appointments tomorrow and head to Mt. Rushmore!

a good day

I am in Rochester, MN with my boys.  I am wiped out this evening so I sent them out to dinner on their own.  Yesterday was a very long day in the car, fortunately the boys (Mostly Jacob) drove all but about and hour and a half that I drove.  I slept a lot on the way here.  We got checked into the hotel and ordered room service and celebrated Jacob passing his EMT test!!!!!

This morning we got up and went sight seeing and then went to the mall and did some shopping to get some things that the boys will need for back to school / college and then had a late lunch.  Then we came back to the hotel and we all napped.  I think all the driving yesterday took it out of all of us.

They of course woke up and were ready to go, go, go again.  So they are off to dinner and hopefully behaving and I am still hanging out at the hotel.  My testing starts at 7 am tomorrow and then only have one dr appt tomorrow as of now.  That can easily change when you are here.  I have two additional dr appt on Friday as well.