UPDATE GALORE!!!!!

Things have been going very well since my gallbladder attack.  I was given a refill of my gallbladder medication, did an ultrasound which came back clear, and was to do a test to check for sludge.  I opted out of doing the testing for sludge, but if that pain occurs, again, I will schedule for it.  My primary doctor was ok with me holding off on this for now.

I wouldn’t say that I’m tired ALL the time, but I do feel tired quite often.  On top of that, I’m ALWAYS cold!  I am not one to sleep with socks on and over the last 4 months or so, I wear slipper socks to bed.  I checked with my medical doctor who said we could run labs and check my thyroid now or we could wait until I’m due in August, but she’s thinking there’s a good chance it’s just from the amount of weight I have lost (at least for the cold part).  I decided that it’s not that big of nuisance, so I would wait until August.  I did do my own research, though, and found out that I possibly could have a deficiency in my iron and/or B12.  So, I started taking supplements for those two things.  I’m not sure if it’s the warmer weather in North Dakota (it’s going to be in the 70’s this weekend and we’re used to SNOW until May-ish), or taking this supplement, but I haven’t been as cold lately.  The tiredness is about the same, though.

 My aunt is doing well.  She is having a hard time getting in enough food and liquid in a day, but I feel like that’s, across the board, one of the more difficult things for TG patients to overcome.  Why eat when you don’t feel hungry?  So, she’s getting used to that.  She’s sick of losing weight and doesn’t want to lose too much hair which is, also, very common with TG’s.  So, she’s trying to pump extra protein into her body to avoid hair loss and she’s taking biotin.  It seems like she may be focusing a little too much on calories and protein vs. just eating whatever her body will allow and just focusing on eating every 2-3 hours.  Don’t get me wrong, calories and protein are HUGE, but I think those are things to monitor once you have the whole eating every 2-3 hour bit down.  She’s going to be a grandma for the 2^nd time any day so she’s pretty excited about that and I hope that helps to keep her spirits up!  It sounds like she will be going back to work part-time in a few weeks and hopefully that helps her to feel more human, also.  I know the point of going back to work was when I REALLY felt like a normal person ready to figure out my new normal!

There has been some research studies done showing a relation between cleft palate/cleft lip and the CDH-1 mutation.  I didn’t know that a cousin of mine had cleft palate at birth as she is older than I and had her surgery well before I was born.  I haven’t heard too much from her regarding my journey, but definitely wanted to reach out to her as this really could impact her largely.  I, also, did NOT want to step on her toes as this isn't for everyone!!  I started that conversation out by asking if she had followed my blog and wanted to get her thoughts on it.  She said she had been following my journey and after I tested positive AND my aunt tested positive, she had been thinking more on this, but wanted to get info as she wasn’t even sure where to start.  I was able to get her the information to my genetic counselor down at Mayo as well as my aunts in Fargo, ND.  I let her know about the cleft palate-CDH1 mutation connection and that intrigued her.  It sounds like she has scheduled to meet with the genetic counselor and I hope she gets a lot of great information….I, also, hope she tests negative.  HOWEVER, if she does test positive, she’s got options and that’s the BEST part of this journey!!!