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Cystic Fibrosis Foundation

Transplant info

Become an organ donor

Brass tacks, Volume 1.

Brass tacks, Volume 1.

Where do I honestly start with this post. Tuesday I went over all the transplant information that was sent over to Rima from MNU, in Minneapolis, MN. There is A LOT of information to take in with any medical procedure. For transplants its a serious life change. There are so many rules and guidelines you have to follow for the rest of your life, once you get one. Putting myself in Rima's place (which I try to do multiple times a day), I got extremely frustrated. If someone told me I could not eat or do certain things for the rest of my life, no matter how much I knew it was to save my life and live, I would still be super pissed off. No one likes being told what to do or not to do. Rima, I guess is a little more use to it than most people, but still, I'm calling it, It's bullshit. 

Let's start at the beginning with the basic rundown of why Rima is in this "bullshit boat" (I'm coining this phrase). Rima's lung function has be declining steadily over the past 10 years or honestly her life. She is at the stage of , needs new lungs or living the rest of her "life" without them. It's her choice and she has picked new lungs. Now, don't be fooled by thinking new lungs fix everything and you can wipe your hands clean of CF. She won't have CF in her lungs anymore BUT she will still have it in the rest of her body. Doctors like to explain it as if you are trading one disease for another (or a few different ones). Yes, once she gets new lungs and she recovers from the surgery she will be able to run again, hike, walk fast, go up and down stairs, and not be on oxygen 24/7. Many people who get double lung transplants even run marathons. This might be a little intense for Rima, but who knows! She used to run track in high school.

What you may ask are the cons of a double lung transplant? A lot of these cons are because she will have to be taking immunosuppression drugs or anti-rejection drugs for the rest of her life. This is so her immune system does not try to "kill" the new lungs in her body. Since they are not hers, her body will try to "kill" off the foreign agents. The anti-rejection drugs lower her immune system to a point that it can't try to fight off the new organs. This comes with a price. Rejection can still happen at anytime with a transplant even 3-8 years after. The first year is when rejection is at its highest, but it can happen down the line also. To try to avoid this she will have to take her anti-rejection drugs daily and on time. She will have to make sure she checks her blood pressure and temperature often, to make sure the drugs are doing their job.

Due to her immune system being suppressed, risk of getting sick and infections are very high. Her risk for multiple cancers will be very high. There is a very big percentage that she will get Diabetes. She had Osteoporosis back in middle school but will most likely get it again. Some other conditions that she will be in high risk of are: cataracts, kidney disease, gastroesophageal reflux disease, hair lose, and high blood pressure. There are more but these are the main concerns; like the doctors said, you're trading on one disease for another one.   

Now, the food/drink part is what gets me (don't judge). She will no longer be allowed to have: deli meats (meh, no biggie), raw fish this includes all sushi (tear...) and all alcohol (!!!!!). Yes, I said it no more drinking! A 26 year old, will not be allowed to drink again (btw she loves going to breweries). I know, I know, in the big picture who cares, it's for her life. Yes, I get that, but no more drinking!? I've cut down with my drinking since I heard about this, to prepare to drink basically only on occasion, to give Rima a partner in her sobriety. This will do wonders for my workout plan, I keep telling myself. If you can't laugh about this, this "bullshit boat" then when can you?! Like I said in my first post, we are funny ladies. 

  Rima, lightening the mood...

Rima, lightening the mood...

To lighten the mood of the day. Mainly for my on sanity, we had taco night! I'm dubbing it "bean's no bullshit boat night". Where we stuff as many tacos in our face as we please and then watch Star Wars and not talk about anything medical. Rima, appreciated this greatly, even though she only had two "bean's no bullshit boat night" tacos. Hard shell, not soft shell, which I will never understand. 

Park picnic

Park picnic

Ladies Lunch

Ladies Lunch

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