Cost of Cystic Fibrosis Part 1: Financial Cost of Cystic Fibrosis

Five Year Lungiversary

February 24, 2018 marked a milestone for me. It's been five years since my double lung transplant. Five years I would not have had without the generosity of my donor's family.

In some ways five years seem like an eternity. It's 1,825 days. That's 1,825 ways to make new memories. 1,825 memories to wake up to. 1,825 sunsets to view.  The possibilities seem endless.

Five years also feel like such a short time. It'd only a blip in a person's life. We look back and wonder, "Where has the time gone?" In the beginning, it seems like so much sand is in the hour glass. As time goes on we realize there isn't as much sand as you thought.

Five years both long and short. So many great memories, yet, not enough. Funny how that works.

I remember the events leading up to my transplant. I had been listed and had been told it would take at least a year before a match would be found. The night of February 13, 2013, I had just returned from an appointment at Stanford. I was exhausted from the four hour drive. I went to bed and fell asleep. Around 11pm, I woke up with my heart racing. I checked my stats (I have a finger pulse ox at home).  My pulse was over 150 and my Oxygen was height 80s to low 90s. I called 911. I was taken to a local hospital where my boyfriend met up with me. He endured the ER nightmare (they weren't equipped to deal with a CF emergency). My boyfriend ended up calling UC Davis and they instructed him to request me being transferred there. The request was put in and I received a helicopter ride to UC Davis Medical Center. I spent the next several days in the ICU. I was set up with a moisturized high flow for my oxygen. My boyfriend had to get creative about how to celebrate Valentine's Day in an ICU. Hint: battery operated candles, box of chocolates, large Teddy bear, a peanut butter milkshake, and a Star Wars marathon. Dates can definitely occur in the hospital! It was a memorable first Valentine's Day.

February 23 was my first day out of the ICU and on a normal ward! My sister and I decided to have a Girl's Night, Safeway mac'n cheese and a movie. I was about to take a bit of hot gooey mac'n cheese and my cell phone rings. "Miss Cortez?, We have a set of lungs for you. Don't eat or drink anything." Everything turned into a whirlwind. Lots of phone calls and tears. Nurses, I've known forever, came and wished me luck. It was a farewell and good luck on my next journey type of moment.

Another helicopter ride later, I was in Stanford. At 12:00am, I was placed on the operating table. My new journey had begun!

What has happened in these last five years? Well, I haven't won the Nobel Peace prize.  I haven't travelled to space. I haven't cured cancer. And I definitely haven't travelled to foreign countries. So, what have I done in these last five years? I've done a lot, but not enough.


I was able to meet my niece and nephew. They were born after my transplant. I returned to Children's Ministry for three years. Did the Thanksgiving 5K, twice. Went on s verbal hikes. Celebrated five extra birthdays. Worked a couple of jobs. Started a tutoring business. I like to believe I've helped a handful of kids with more than academics. I travelled to Colorado. Hiked into the Rockies. Travelled over 12,000 feet above sea level. I got married to the awesome man who was by my side for the transplant process. Went to the Gilroy Garlic Festival (garlicky goodness everywhere!). Saw a wild sea otter. Visited the Monterey Aquarium. Watched my grandmother celebrate her 70 birthday. And relented saw my other grandparents celebrate their 75th birthdays. There's so many joyful things I have experienced these last five years.

There has been so much joy, but also many painful losses. I had a round of rejection that took several months to clear up. I had to have stomach surgery. I've had multiple sinus surgeries. And still deal with the head of medical insurances. I've had to say goodbye to my Uncle Phil, my Grandpa Ed, Tina (my second mom), and my Granny. Experience the Loma Rica fire take my grandmother's house (so many memories in that place), yet it spared my family's Ranch.

There has been a lot of sadness in the last five years. But there's also been a lot of joy. And the joys have outweighed the pains. I am hoping to see another five years of adventure.

Chili Cheese Potatoes

Probably the only good thing about having Cystic Fibrosis is the amount of calories we have to consume everyday. The amount of weight we lose when we can't make our calorie quota, is not so good. I have worked hard trying to find that balance. I can get away with eating three servings of pasta for dinner on a daily basis. While this recipe is not pasta related, it's definitely tasty. Non CFers can enjoy this dish too, but as a side or appetizer during a game. CFers, enjoy as much as you want!

Chili Cheese Potatoes

6 Red Potatoes, scrubbed and sliced

1-15oz Can Chili (any kind you like, better if it's homemade)

1 Tablespoon Taco Seasoning

1 Tablespoon Cooking Oil

Water

1 Cup Cheese

Slice the potatoes however you like. For this article, I sliced them thinly. Usually, I prefer wedges. Toss the potatoes and taco seasoning together.  Heat the oil in a pan over medium-high heat. 

Add the potatoes. Cook the potatoes. Add water to prevent the potatoes from burning. Stir regularly. Once potatoes are cooked (can be pierced with a fork) add in the chili. Cook until the  chili is heated through. Turn off the heat and add the cheese. Stir to mix the cheese in. Serve with more cheese spread on top. 

A Patient's View On Rejection

I've been MIA for the past few months. After my last posting, doctors found rejection in my lungs. It's been a stubborn bout of rejection. The first time they discovered it, I had A2 rejection and was given high dose steroids. The second time the rejection was found, it had gone down to A1 so the doctors let it be. The third time it had jumped to A3 rejection, so I was hit with high dose steroids again. The fourth time the rejection had gone down to A2. Since rejection had been found four times in a row, the doctors decided to do something more drastic. They sent me to the hospital and gave me ATG (also known as the Rabbit).

The steriod rounds were exhausting. I would get admitted for three days. Each of those three days, I would receive 500mg of solumedrol (IV version of prednisone). That stuff is not fun. I wound up with severe insomnia. I felt exhausted but couldn't sleep. And TV was horrible, so I couldn't use that to keep me occupied. I got irritated with a doctor because he came in early one morning and realized I had been up all night knitting.  His response was, "At least you're keeping yourself busy." It took a lot of self control to not blow up at him. 

The high dose steriods also messed with my taste buds. For the first couple of hours after receiving an infusion food would taste bitter. The first time it happened, I hadn't been warned about the change in taste and I drink some milk. It tasted like it was spoiled. I thought that I had been given spoiled milk. When I tasted water, it was so bitter I had to force myself to drink it. I finally went online and read about other people's experience with high dose steriods. There I learned about the change in taste. Some patients even warned to wait two hours after finishing an infusion before eating anything. Was definitely good advice.

The other issue I noticed with the high dose steriods was that my anxiety went through the roof. I couldn't handle more than a couple of people at a time in my room. That made it hard since the transplant team is like a mini mob, all wanting to come in my room at the same time. I wanted to scream. I'm sure the severe lack of sleep did not help my situation any.

My latest hospital trip lasted 10 days. It was pretty hard, both physically and mentally. Since I had shown rejection four times in a row, the doctors brought me in to treat me with a heavy hitter. It was called Antithymocyte Globulin Rabbit (ATG or Rabbit). Because of having Cystic Fibrosis, I have taken some harsh medications. None have ever knocked me on my rear like ATG did. The first dose made me tired, and fuzzy brained. SB said I sounded drunk. I had trouble focusing. I had a horrible headache. My right sinus swelled up, and the right side of my body got really sore. I felt as if all my energy had been sucked out. Something as simple as getting up to use the bathroom felt exhausting. The following day, I felt like I had the the flu. I had a slight fever, a headache, fatigue, and achiness all over. I felt miserable. 

The way they did the ATG was a six hour infusion one day and then a day break. I had four treatments over ten days. At one point I got a two day break because my kidneys pitchecd a fit. Don't blame them. 

ATG works by attacking the T-cells in the body. T-cells are the body's soldier cells. By attacking them, the immune system is being attacked. The idea is to destroy the immune system and then let it rebuild, hopefully the transplanted organ stops being attacked by the new T-cells. We will see if it works. The treatment left me worn out. I've been home a week and still don't feel like I've had enough rest. I have to be extra cautious about my exposure to germs. So it's extra santizing, and wearing my mask more often. Also avoiding large crowds. That part has been hard because How To Train Your Dragon 2 is in theaters right now and I really want to see it. 

And to top off all the medical issues, SB was hit by a car on his way home from work. He was on his bike and someone ran a red light. He survived, just dealing with getting himself checked out. He's on medical leave from work. His bike is a mangled mess. Bills from that are mounting. And his not being able to work makes it hard for him to pay his rent or buy food. 

So between my constant Stanford visits and SB's accident, we haven't had time to stop for a breath. I keep hoping things will calm down soon. Both of us need a vacation.

To say it has been a roller coaster is an understatment. Going in and out of the hospital makes it hard to do normal things like find a job or spending time with friends.

Please donate $2.24 to help with continued transplant expenses.

http://cota.donorpages.com/PatientOnlineDonation/COTAforSolanaC/

First Lung-iversary

I have made it to my first Lung-iversary. Let the celebrating begin. Of course I'm celebrating by having a bronchoscopy . There's no other way to celebrate a huge milestone like being sedated and having a tube shoved down your throat.

Seriously, though I am very thankful. I'm thankful to my donor and his/her family for making such a gift. I am thankful to everyone who provided support financially, spiritually, emotionally, and  physically.

As a special thank you, I've posted some pictures of my past year.  Without your support it would not have been possible.

Day I received news about being listed.

Just got the call. Posing before my helicopter ride

 

There be vampires in the hospital

First walk.

First day out of the hospital. 75 lbs.

First day of rehab.

Bane's daughter

Finally got my black mask.

Enjoying the outdoors.

Trying out my new phone.

Month out 93 lbs.

Needed day trip to the ocean.

Outing in Chico

Look who was waiting for me outside of rehab.

First hike. Mick and I owned that rock.

Someone wants my Boost shake.

Morning cocktail.

Sinus surgery AKA nose job.

Snuggling with a new puppy makes everything better.

Blood clots removed from nose.

 

Mick meets Leia for the first time.

Becoming buddies.

Another wait at the infusion center.

Walking the dogs across the Sundial Bridge.

I am Wonder Woman!

My new nephew.

My new niece

Getting a milkshake after a day at the infusion center

Mick and I taking a break from hiking.

Getting a picture of my eyes.

I hope you've enjoyed a look back at my first year post transplant. I would love to be celebrating again next year, but I can't do that without your continued support. As my lung-iversary is on February 24, I am asking for a humble donation of $2.24 to help with continued transplant expenses.

http://cota.donorpages.com/PatientOnlineDonation/COTAforSolanaC/

Bumpy Ride Part 3

The transplant ward was quite nice. I was place in a private room right by the Nurses Station. I was still in a lot of pain. The nurses seemed to know what they were doing though. They were used to dealing with transplant patients so none of my issues were new to them. 

I was still in a lot of pain. And I didn't have the strength to walk on my own. I couldn't even walk to the bathroom. 

The beds in the transplant ward caused me some issues. They were not designed for someone under five feet. The nurse would have to help me scoot to the edge of the bed and then help me "jump" down. They didn't have any steeping stools for me to use. Since I so light, we ended up using a garbage can as a stool. 

I wish I could say, I did a lot of resting but the doctors were pretty much shoving me out of bed the moment I woke from surgery. Just to get them to stop nagging I tried standing (with a nurse holding my hands). I almost passed out. My legs were so weak. It was like I had no muscle left. I pretty much didn't. I weighed less than 75 lbs. 

On the ward I would try to walk little bits. Sometimes, just to get to the commode was exhausting. I had very limited mobility with my arms so I needed a lot of help from the nurses. 

I was also very thirsty and very hungry. I gnawed on ice a lot. I wasn't allowed to eat or drink until a swallowing specialist cleared me. It took a couple of attempts before I was allowed to eat solid food. 

The pain seemed to go on forever. I couldn't a get comfortable enough to sleep. And when Imdid reach a point when the pain seemed bearable, the doctors old switch up my meds and I had to start all over. Sometimes the pain would be so bad I was in tears. One night I called SB at would because I was in so much pain. I needed a distraction. 

I was averaging about 3 hours of sleep per day.

The high doses of steroids didn't help much either. I had a hard time falling asleep and then I couldn't stay asleep. Most nights I'd wake up in a panic and couldn't go back to sleep. It got so bad that the doctors put me on melatonin to help me fall asleep and Xanax to help with the anxiety. 

During the day, I had a different set of problems. I've always been claustaphobic when it comes to masks and here I needed to wear a mask every time I left my room. It was torture. The nurses were really patient with me. They would hook me up to a pulse ox and show me that my levels were fine. They also let me lug my teddy bear around (a gift from SB). I'm sure they've seen more unusual things than a 31 year old carrying a teddy bear everywhere. 

Because of the surgery and my limited mobility and having gone through surgery, the doctors order Heparin shots three times daily. To say these shots hurt is an understatement. It was like being injected with liquid fire. The stuff burned. I just wanted to scream. A couple of times I did. The nurses felt bad every time they had to give me the shot. 

Go Smoothly Smoothie

Back in October, I wrote about constipation in The C Word.  Transplant meds seem to have made the problem worse. And there doesn't seem to be a happy balance. If I take one dose of Miralax, I get stopped up. If I take two doses, then I'm in the bathroom making unworldly sounds. 

It's a tough job trying to find that balance. I finally got so frustrated with being at one extreme or the other.  I think it had to do with the transplant team telling me that I just have to experiment with the Miralax to find the right amount to take. So instead of taking 2 doses try 1 1/2. Well 1 1/2 was still too little and 1 3/4 had me back in the bathroom making those noises. It had gotten to the point where SB was calling me his "Little Bathroom Lady". So, I gave up the battle with Miralax and decided to take things into my own hands. 

So far this smoothie seems to be working. I'm not feeling stopped up. And it doesn't sound like an exorcism when I'm in the bathroom. 

Ingredients:

1 Apple cored and cut into chunks (use any type you like)

1 Banana (even better if roasted)

10 Blackberries

10 Raspberries

10 Blueberries

5 Strawberries, hulled and halved

Juice of 1 Orange (I use naval)

1/4 cup Plain Yogurt with live cultures

1 scoop Miralax

Put all ingredients in blender and blend until smooth. 

Notes: 

Can add juice of 1 lemon and 1 lime for a more citrus flavor.