Health Update #1

My first health update on my blog. Where do I even begin? A lot has been going on!

Let me start with my lungs. My last pulmonary function test was 60%, my highest since transplant and my highest since before college! My x-ray and CT scans have all looked clear in recent months which means there aren’t any spots of pneumonia (bacteria causing mucus to stay trapped) which is also a really good sign. I’m hoping I can get my lung function above 65% with some good old fashioned exercise. I haven’t been doing a ton of exercise recently because of my hip…but my aunt and my friend Gabby’s mom have graciously donated me an elliptical and seated bike (both low impact and not hard on the joints). They will be put to good use and I am oh so grateful!! If I had to give my lungs a grade, I’d give them a B. The reason is there is always room for improvement & for the fact that I have been coughing up some nasty looking stuff every now and then recently. We believe this sputum has been coming as drainage from my sinuses and not necessarily my lungs. Which is actually a good thing, even though it’s not great.

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Those bugs don’t stand a chance against this strong girl!

This leads me to an update about my sinuses. A recent nasal swab showed that my sinus boogies are growing a couple bacterias and fungus. Bleh!! My sinuses have been a huge issue my entire life. It comes with CF. A little anatomy…The sinuses are considered part of the upper respiratory track which leads to the lower respiratory track…aka the lungs. This makes it especially important to keep them free from bacteria to avoid any possible drainage infecting my new air bags. To try to clear out the bacteria & fungus I will start IV antibiotics, change up the anti-fungal I am on, and have a sinus surgery next week to give them a good old fashioned “power washing”. We’re hoping this will get rid of all those bad buggies! This is usually an outpatient surgery but because of my lung transplant, I will spend one night in the hospital for monitoring.

My kidneys are stable. I am currently listed for a kidney transplant but the process is much different than a lung transplant and takes much much longer. The average wait time for a kidney is about 4 years!! It’s very complicated but I’ll try to explain the best I can…My current kidneys are working just enough to prevent fluid build up and remove any extra minerals, like potassium (too much in your body can actually cause dangerous heart rhythms) and phosphorus, from my body. If I stay very well hydrated my creatinine level (a reliable indicator of kidney function) will stay around 1.8-2 (normal level is between 0.5-1.1). I regularly see a team of nephrologists (kidney doctors) who work together with my lung transplant team to ensure my kidneys do not endure any additional damage and to try to keep them functioning for as long as possible. That is what I love about INOVA Fairfax Hospital, teams of all different types of doctors work together for their patients. And they are all friends, you can tell from the way they interact with each other.

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Getting an MRI of my hip – October 2017

Moving down to my hip. To be blunt, it’s not good. This was probably the toughest pill for me to swallow when I found out how bad it actually is. I have avascular necrosis (AVN) in both my hips but far worse in my left. AVN is essentially the death of bone caused by a lack of blood supply and is a possible side effect of prednisone. It causes a lot of pain at times & a limp when I walk. I have transplant friends who are 5+ years out and have never gotten this…So how did it happen? My doctors believe that the extremely high doses of prednisone I had last year (to save my life) combined with not being able to move for months caused the AVN to develop quickly. Unfortunately, there is no cure for this and my hip will need to be replaced. Timing is crucial though. The orthopedic surgeon wants me to be as far out from transplant as possible. But if I we wait too long there is a chance the ball of my hip will collapse in on itself which causes a lot of problems with the muscles and makes the replacement more difficult. Not to mention a lot more pain! So, my doctors & I decided we would aim for January. This will allow me enough recovery time to be able to enjoy my summer with friends but also far enough out from transplant. And time to zap the bugs in my nose! We do not want any type of infection having any opportunity to make it’s way into my new hip.

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Wall art in Washington, DC

I think that about covers it. This all may sound a lot worse than it is but to me, if my lungs are healthy and I am breathing, then I am one happy girl!! Yesterday I spent the day in DC with my friend Amber. We had such a fun time finding amazing wall murals and eating some great food. We decided to try out a new shared biking system called MoBike. The nice thing about these bikes is that they can be parked anywhere, you don’t have to find a station to dock it once you’re done. Highly recommend. According to the MoBike app we rode for about 2 hours and covered about 13 miles. I was breathing pretty hard up the inclines and had to walk my bike some, but I made it! That should give you an idea as to how my lungs are doing and my energy level. Both good!!

I hope everyone reading this has an amazing rest of their week! Stay healthy & happy, my friends. 🙂

3 comments

  1. Great update, you should speak at Medical schools and teaching hospitals to teach students and residents what it’s like to be a patient and what it’s like navigating health care. You do it better than anyone I know!

    Liked by 1 person

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