Routine

The further out from losing my stomach that I get, the more I realize that routine is critically important to how I am feeling.  I did really well when I went to Mayo/vacation this last time but still not perfect.   I am paying the price now, but not as severe as I have in the past.

I know that when I got home that I was on the verge of another bowel obstruction, which I was thankfully able to avoid.  I am still fighting some lung issues and not responding to steroids as quickly as I had hoped.  BUT I am still getting by at home and am only really struggling at night.

I think if I only had one or maybe even two medical issues, it would be a lot easier for me to manage.  Lately it has really felt like a juggling act as I have so many different symptoms from so many different issues that I sometimes feel like I will always be grappling with one issue or another.

However, this is my life and I will continue to make the best of each and every day that I am blessed to be on this earth.  My youngest son starts his senior year of high school this week.  I can remember when all my kids were little and these days seemed so far away.  Now it feels like I just blinked and they are all adults.

It is a bittersweet time for sure.  I am super proud of all of them and excited to see where their lives take them, but also miss them greatly as they get more and more independent.  I also love that Dale and I get more time together and are able to spend more time together.  All I can say is enjoy every single moment of your life, good or bad, as no one knows when their last day will be.

asthma/copd

well, not a surprise that my asthma and copd are flaring again.  After the travel and climate changes, as well as the stress on my body and being out of my usual routine I noticed earlier in the week that I was struggling more than normal to breathe.  It was also super humid outside.

I almost went to the ER on Wednesday night but waited since I had a scheduled dr appt on Thursday morning.  As usual, my O2 sats were OK at 96% but my lungs both sound bad.  I was started on steroids as well as a zpack.  I am having some sinus issues again and we also want to cover me due to my recurrent pneumonia status this past year.

I felt a lot better during the day yesterday but started struggling again last night.  A little bit better today.  Hoping and praying that tomorrow is a better day.

I was also started on some new medication that will hopefully help with my post thoracotomy syndrome.  So far it is just making me really sleepy which isn’t all bad with the steroids. I also had to change my pain medication to one without Tylenol as Tylenol can create a false reading with a continuous glucose monitor.  Which sucks because I am also not supposed to take ibuprofen due to no longer having a stomach.

I think we have a good plan in place for now.  We did very briefly discuss TPN at my appointment as that could be an option for controlling my glucose levels.  I will resist that option for as long as possible as TPN can only be used for so long.  The other option is a J tube for feeding but that option is also fraught with complications due to the bowel obstructions that I have had during the last year.  So for now I will keep doing my best to manage my levels through continuous grazing and  low carbs.  This is not too hard for me to do, but I am still trying to maintain my weight also.

I am sure that the “normal” healthy person reading this thinks this is all terrible but I am actually feeling like I am holding my own pretty well at the moment.

Rough night

Had the roughest night last night that I have had for a while.  My blood sugars were all over the place, super high and super low and then unable to to bring up to a normal level.  Took glucose tabs, ate some fruit and protein and all my usual tricks and noting was helping.  It finally got up into the 60’s and stayed there all night.  Still fighting the lows today.  I also had a vomiting/dry heaving session that was reminiscent of the early days of recovery.

Trying to focus on the positive of my crappy night, I am super happy that I had the low struggle that I couldn’t bring up immediately as this doesn’t happen too often but it is now recorded on the CGM that I will send back to Mayo on Friday.  I don’t know how much they can help me change my hypoglycemia issues but at the very least having a CGM is definitely a very useful tool in alerting me before I get too low.

The other positive is that the sickness that I had last night is not the norm for me anymore.  I still have severe nausea and occasional sickness and all kinds of intestinal issues but I will take those any day over the vomiting and retching every day.

I am also having some flare up of my asthma/copd as well as my fibromyalgia.  I think it just due to all the stress of traveling and being off my normal routine as well as all the climate and altitude changes.  I do have a dr appointment on Thursday so if my breathing continues to decline we can address it then.  For now my breathing treatments and inhalers are doing their job.

 

Mayo final visit

I had my final visit of this series at Mayo on Thursday.  I started at 7:30 am with a Mixed Meal Tolerance Test that lasted 5 hours and consisted of 30 blood draws.

After that was completed I had an appointment with the diabetic nurse and had a Continuous Glucose Monitor (CGM) placed.  This is a device that is placed against the abdomen and inserted into the abdomen leaving a plastic piece with an adhesive patch on the outside skin.  Then the sensor is placed and locked into that.  It sends information to a device that looks kind of like an old style iPod.  I have to keep this device with me at all times or within at least 20 feet of it to transmit the information.  This device measures glucose levels based on interstitial fluid and has a 10-20 minute lag of actual blood glucose.  It is set to alarm me at the first sign of a low glucose level and then I still have to check my food sugar with a finger stick to verify my actual blood glucose.  Although in ways it is more for me to do to track my levels it has so far prevented me from dropping below 50 and that is amazing.  It has also alerted me at least once per night and up to three times a night that my glucose level is low.  I had no idea that I was having hypoglycemia during my sleep but the endocrinologist that I saw was pretty confident that I was and he was correct.

The huge benefit of this CGM is that it is preventing me from dropping to the 20’s and 30’s glucose levels.  Over time my body has adjusted to the lows that I am having and I was no longer getting the symptoms of lows until I am dangerously low.  The monitor that I am wearing now will last until Thursday evening and at that point I will remove it and mail it back to Mayo Clinic so that they can interpret the results.

After this was placed I met with Dr. Kudva.  He felt that at the very least I will be prescribed and wearing a CGM forever or until something better comes along.  He is also considering starting a research study based on my status of having no stomach and severe hypoglycemia.  The study would consist of wearing the CGM as well as a glucagon pump to release glucagon when levels fall.  We will explore this option more after all of my test results are in and if there are enough people without stomachs and severe hypoglycemia that are willing and able to participate.  Dr. Kudva will contact myself and my local drs after he has everything evaluated and a treatment plan in place.  I am feeling hopeful at having a better way to manage this hypoglycemia.

Although it is expensive to travel repeatedly to Mayo Clinic and see their physicians, they  have truly made a difference in the quality of my life.  My local physicians are all great, but I am not the typical patient that they see and are sometimes baffled by my various conditions.  It is a blessing to be able to combine the knowledge and treatment of both.