Wednesday, May 14, 2014

Heatin up!

I am in Mexico!!!!!
I have been here since Sunday, which turned out to be perfect timing as it began snowing at home right as we left.  So far I am having an awesome time here.  It is amazing how much being able to breathe can change an experience.  Today we went to a place where the waves are really big. (there is a barrier island off shore from our hotel preventing the huge waves there). I was able to stay out in the waves with everyone for 2 entire hours!  We body surfed, dove through and floated enjoying our working lungs (though I may have appreciated my lungs a bit more then the others!)  I have also been able to run along the dock, walk a ways along the beach and even participate in volleyball (I'm not so good at this last one, but maybe by the end of the week).  
   There are of course a few challenges, (what's life without challenges anyway?) but overall it's way better being here with good lungs than without!

Wednesday, May 7, 2014

all one meal?

'Ello lovelies!
I have started a new tube feeding regimen and decided to put it out there in cyberland!  For those who do not know, I have what is called a gastrojejunostomy tube or GJ-tube.  This is a tube that is placed through a whole in my skin on my belly into my stomach.  It then has a part that goes down into the top part of my small intestines.  This tube replaces my g-tube (just the stomach part) that I had before my transplant.  I have had a g-tube for 9 years.  They put GJs into people after transplant because it helps cut back on acid reflux (can cause rejection).  Anyway, I haven't really talked much about it, mostly because it isn't really a big deal to me.  I have been doing it so long its like taking enzymes...oh wait thats weird too, um.... its like brushing your teeth.  After transplant it is common for people who previously needed a g-tube (I may use g synonymously with gj) to maintain/gain weight, to no longer need it.  Unfortunately so far that is not the case for me.  I am almost 7 months out and still using my tube.  People typically put a formula into the tube through a pump overnight, its similar to ensure or those other breakfast drink things.  For the past 9 years I have been one of those people, but not anymore!

I have known for quiet sometime that the formula really doesn't agree with me, but I needed the calories and it helped so I stuck with it.  Since my transplant I have been going periods without doing tube feeds hopping to be able to maintain my weight.  So far I have been able to maintain without tube feeds but I am needing to gain some and am struggling. (no I'm not lucky its the same as struggling to lose weight, its hard and you just want to be able to eat what you want without having to care or think about it)  Well anyway, after my appointment last week we decided I should try and gain 10-15 more pounds, enter the tube feeds.

I did my first tube feed in about a month Saturday night.  It went okay, I woke up early in the morning with a horrible pain inside and felt kinda crappy the whole next day.  I had researched in the past healthier options for tube feeds (the cans are full of chemicals and fake stuff) but hadn't really found anything that great, plus nothing could quiet compare to the amount of calories I was getting with the cans.  Well in November I had switched to a lower calorie product because I was not tolerating the old one I did, that mixed with my lower calorie need and ability to eat a fair amount by mouth made this the perfect time to be able to sacrifice some calories in the name of healthy food and feeling better.  

I began researching blenderized diets and set out to make my own.

My first attempt was a bit of a failure.  Despite choosing soft foods to begin with, our blender was just not up to the task of pulverizing the food in order to get it through the tube.  The first batch I made had: avocado, tuna, coconut milk, olive oil, garbanzo beans and kale, cabbage, carrot juice.  As I began priming my tubing the pump clogged.  I then strained the mixture and tried again.  This time it was able to run but would get clogged every hour or so and start beeping.  I would then have to pull the tubing out of the pump work it with my fingers to try to break up the clog and then start it again, leading to a very poor night of sleep.

Many of the blogs and websites I had found about a blenderized diet talked about getting a high end blender. (vitamix or blendtec type)  Luckily my aunts have both of them and we were able to borrow the blenders to try them out!  I had some of my first batch left so I put it though the blender to see if it would get it better.  It did.  I poured the newly blended food through the strainer and it went right through, not one clump at all!  It also ran through my pump just fine, no waking up for me all night!

For my second batch I made what I have labeled The Green Blend (it sounds so fancy that way)
avacado, garbanzo beans, coconut milk, olive oil, 2 hard boiled eggs, kale, red cabbage and carrots (the whole vegetable this time not just the juice!) plus a little water to thin it up.  I made this batch very unscientifically, throwing some of this and a bunch of that into it, pretty much just using up what we had.  It ended up filling 3 of my feeding bags and once calculated out averaged about 1000 cals per bag.  

My third and final batch so far is called The Red Blend
After seeing the fun color of the green blend I realized that I could probably choose the color of each batch, which would make it a little more fun, both to make and to do (no more blah yellow/white formula for me!)  I decided to try a pink one.  For this I used 1 beet (greens and all), 1/4 red cabbage, 1 C coconut milk, 1 C garbanzo beans, 1 C peanuts and 2 eggs (hardboiled), also a little water to thin it.  I got much more precise with this batch and made one bags worth at a time.  It turned out great, the color is awesome and its a whopping 1,900 cals!

I am still very much in the learning phase of the whole blenderized diet for tube feeding but I am liking it and will definitely get better as time goes on.  The first step now is to buy my own good blender (this is a must if you are going to do this yourself as I found out the hard way!)  I am really enjoying making the blended food though.  I get to go to the store and pick out whatever I want to go in it, all those pretty looking veggies that I want but I don't actually like get to go right into my cart now!  Plus you can get all kinds of good things without having to think about if they actually would taste good together (and with the j tube there is no after burp so I never have to taste it!) I mean would you really want to eat coconut milk, kale, eggs and peanuts all together?  It is also kind of fun making them.  I am trying to get more into cooking and this is a great way to learn and practice my skills (especially chopping) without too much pressure since no one is actually going to taste it.  If I way overcook my eggs, oh well as long as they will blend we are good! 

I wanted to share this not only to update people as to what I am up to but also to share with others who are tired of formula.  You can make the switch!  I have a GJ tube and must have my blended food through a pump (it goes into the J part) and it is working just fine for me!  I take my enzymes throughout the feed (basically anytime I wake up in the night, I pop a few in).  My pump is the enteralite infinity pump and it is able to handle the food.  Like I mentioned it just needs to be well blended (no tiny clumps) and thinned out a little bit, it can handle the thicker smooth blend but it struggles a bit and goes a little slower.

Welp thats all for now folks!

My food ready for freezing!

Friday, May 2, 2014

There's a fungus among us!

Well the results are finally in and I am rejection clear for the time being!  I did however grow a fungus in my lungs.  Luckily the treatment for this is an oral antifungle medication.  After many calls to the pharmacy I was finally able to get ahold of it and get it started so my trip can go as planned.  I need to get blood tests a week after starting this medicine meaning I needed to start it today in order to get the test done before my trip. With this doctors appointment safely behind me I can get ready for my trip!!!! 
Peace out for now homies! 

Thursday, May 1, 2014


I have returned to Durham for yet another bronch and an appointment.  I told my dad last night that it's crazy to me to think that ONLY 6 people have ever bronched me.  He replied that it's crazy I used the word only considering most people haven't even had one person bronch them.  I guess I get a bunch of those.  Anyway I had my bronch yesterday and am currently waiting for the results.  I feel similar, I imagine, to how a person waiting to see if they have cancer or not might feel.  Usually I'm not that nervous about the results but this time my plans are contingent on the results.  I am hopefully going to Mexico with my grandparents and friend from school (who I haven't seen since November) but if I have rejection it might mean I can't go.  I have been reluctantly checking my e-mail all day.  I want to know the results but I also would rather not if there is rejection, it's better living in the world with the possibility of Mexico than the world that it won't happen.  I guess I never know it could happen even with rejection I'll just have to wait and see.  I am also a little nervous about the treatment for rejection.  If I have it this time they are going to treat me with RATG.  This is an IV treatments made from rabbits and people sometimes have bad reactions to it.  I have two friends who recently had it and had a bad reaction.  The thing they have in common, they both have had pet rabbits.  I have too, in fact I have had 7 pet rabbits throughout my life 😁.  Again we will just have to wait and see what happens.

The rest of my check up went well.  The doctor even told me I have beautiful lungs, to which I replied "thank you"! I have never had someone tell me that before and had no idea how to reply to that comment! 😛

In other news: the rest of our Europe trip went well.  We got home on Sunday.  Our last stop was Norway and it was one of my favorites.  We stayed with Sebastian (our exchange student from last year).  His family took us aroud and we got to see the town of Bergen.  It was really nice and pretty.  The area really reminded me of the mountains in Colorado if Colorado flooded!  We took a tram ride (a Pinterest success!) up the mountain and we could look out all over the town.  It was beautiful (just like my lungs 😜, er Freddie Joe's(what I call my donor) lungs). We also got to ride on Sebastian's Grandpa's boat which was really fun too!  I love the water and going on boat rides!  Overall despite the challenges my transplant brought it was an enjoyable trip.  I am glad I was able to go, which was definitely due to my transplant. There is no way I would have survived all that walking with my old lungs!
Talk to you later peeps! (Hopefully from the beaches of Mexico!)

 A view of Bergen from the top of the mountain.

My Norwegian troll boyfriend!

A view from the boat!