Transplant Evaluation Day 2

**Start here for Day 1**

Tuesday was much shorter (which means a much shorter blog post too...whew!

I had to start the day fasting again. I know it sound silly to complain, but I know I was at a calorie deficit from the day before so I woke up really really hungry!

10:00 Esophagram: I checked in for my esophogram at 10:00. They had me change into a gown and explained the test. Then I waited for a really long time. I guess they were finishing up with another patient and it was taking longer than expected. Finally, the doctor came in to get started. I was given a cup of barium with a straw. I was told that I would be asked to take a large mouthful of barium and not to swallow it until instructed. I would then be moved into various positions and asked to swallow the barium. They were going to watch how the barium travelled down my esophagus and into my stomach. I had heard Barium was chalky and gross, but honestly it wasn't bad. It tasted like a  flavorless Ensure. It is much easier to drink than the syrup they make you drink for diabetes testing!

So I took gulps of barium while standing up, then while laying on my stomach, and on my back. Then they had my lift my legs in the air, put them down and lift again. I believe they were doing this to look for reflux. I was trying to watch the monitor while the test was going on although it was at a weird angle so I only got quick glimpses. It was pretty fascinating watching the way food travels through the body.

I thought I would be excited to break my fast, but I had so much barium that I actually felt full. I ate a little something anyway because I knew my next appointment would be long.

Class For Transplant: This was a 2 hour class. I was in class with 2 other transplant hopefuls and all of their support people. It was a full house. I was nervous being in a class with other people with lung disease, but it was obvious none of them had CF and I am sure they didn't pose a threat to me, but I wore my mask anyway.

None of the information was new to me and I had heard it all before through research or being part of the CF community. But I surprisingly started to get a bit teary when they talked about donors. It is hard to think that your only chance at life is if someone else's ends tragically. It also made me think about if I ever lost my loved ones in a sudden tragedy. There is no getting around the weight that all transplants represent earth shattering loss mixed with life saving hope.

We were done by 3, but for some reason I left feeling a bit shell shocked and exhausted. Like I said the class didn't cover anything new, but maybe talking about transplant in regards to yourself feels very very heavy! I was glad that this day was shorter and we were able to go back to our Air BnB to relax and get ready for the next day.

Transplant Evaluation Day 1

My evaluation started on a Monday, which is standard for Stanford. It was the day I was the most stressed about because the schedule looked so full! It ended up being a very long day. We got there at 6:30am and didn't get to leave until about 7pm! I had appointment scheduled for 7:30, 9:45, 12:30, 3:30, 6:00 and 6:20. I was also given 3 tests, blood draw, EKG and Chest X-ray, to do "at my convenience." This is a detailed breakdown of my day. I wanted to include a lot of details so maybe someone in the future that has an evaluation at Stanford can get an idea as to what they are in for:

6:30 Labs: My paperwork said I needed to get my blood drawn first and foremost when we arrived at 7am and that it needed to be completed before my first appointment at 7:30. I needed to be fasting for the blood draw. We were told the lab opened at 7am, but since we had never visited the hospital before we wanted to leave early and get there with plenty of time to find the lab. We took a Lyft and arrived at 6:30. We were so excited to find that the lab was actually open. I was told by the phlebotomist that one of the blood tests ordered for TB couldn't be done until 8am (due to it needing to be incubated and that wasn't available until 8??) and that I would have to come back to get that test done. They said I could either do all the other tests first and come back just for the TB which meant I could break my fast, but I would get poked twice. Or I could just wait and do it all at once with only one stick, but I would have to fast until I came back. Food trumps needles in my life so I decided to do all the tests minus the TB with the plan to return after 8. I gave about 15-20 vials of blood and was a bit worried I may feel a bit dizzy from fasting and giving a lot of blood, but I felt fine. I also gave a urine sample. I had extra time so I decided to get a few other unscheduled tests done.

7:00 X-Ray: I tried to get my EKG done, but it wasn't open yet. So I went to get my x-rays done. It was a basic chest X-ray. One facing the screen and one standing sideways. It was the same as every other X-ray I have ever had for CF. It was super quick and easy.

7:30 Bone Density Scan: My husband and I packed a backpack cooler full of food, water and snacks the night before. I also packed my Symdeko and morning pills because the morning was so busy and we just weren't sure if we would make it to the cafeteria in time. I don't love fasting or going hungry so we wanted to make sure we had food with us. I got to break my fast after checking in for my dexa scan. Whew! Soon after they called me back for my scan. This was my first scan and I wasn't sure what to expect. It was quick and painless. They took a scan of my lower back and each hip. I had to sit still for 2 minutes for each body part they scanned. It was similar to getting an x-ray. Simple!

8:00 Blood Draw #2: We ran back to the lab to get my TB blood draw. The amazing tech left my file open so when I got to the lab I did not have to wait in the line again and was brought back immediately. One vial and I was done. Super fast!

8:15ish EKG: We were ahead of schedule and I was so happy to be cruising though my "extra" tests because I did not want them hanging over my head. Since we had time we went over to the EKG lab. We tried to check in, but they said that walk ins (which is what we were) couldn't be taken until 9:00. Since my next scheduled appointment wasn't until 10 we decided to wait it out. At 9:00 they called me back and I got an EKG. It was super simple and fast. They put some monitors on my ankles and chest and took a reading for a few minutes. The tech gave me a print out of my results to bring home. I had no idea how to read it, but it looked cool so I took it. Simple and painless.

9:45 SNIFF test: We checked in at 9:45 for a 10:00 appointment. This test was easy! The brought me back to a room with a huge bed that was standing upright (as in the foot of the bed was on the ground). I stood against the bed while they brought a machine (essentially an x-ray) in front of my chest. The tech was taking scans while asking me to breath normal. Then he took a scan(s?) while I took a deep breath. Finally, he told me to sniff 3 times while he did one last scan. Apparently, this test checks to make sure your diaphragm is working in unison and properly. I passed. I have no idea what it means if you fail or what problems it can cause in terms of transplant, but since I passed I didn't bother to ask.

12:30 Social Worker: You guys, this was a hot mess. Going into it I assumed they would ask the basic social worker questions. But the social worker came in with a packet of questions and I knew he was judging if I would make a good transplant candidate. The problem was the more (random) questions he asked the more I started to wonder if I would pass. For example, one of the first questions he asked was if I had gone to public or private school. Internally, I kept thinking, "wait, what does this have to do with transplant...does your elementary education really impact transplant??" Obviously, I was over thinking these questions, but I was starting to wonder what the relevance was. After taking a step back I think they were just getting a profile on me, but at the time the questions made me nervous as if every step of my life was being  judged. The other part of the social worker meeting that made me panic a bit was when he asked about finances. We are a single family income. After we told him our income he did mention that the cost of living near Stanford (which is required 3 months post transplant) is much higher than where we live (and basically completely unaffordable for us). For reference, the average home value in Stanford is $3 million which shockingly is not affordable for us. And even though we wouldn't be buying a home in Stanford post transplant, clearly rent would probably be significantly higher than out mortgage. Considering we hope to keep paying our mortgage while we rent in Stanford I was wondering how we would possible pull all the finances off. So I was internally freaking out now thinking they are going to reject us for sure! After it was done he explained that they do not disqualify people based on income. I wish I knew that upfront! This is getting long, but the last part that I will mention is that I hate mental math. So when he asked me to count down from 100 by 7s I got nervous all over again and lets just say I will never trick anyone into thinking I am a math genius. It wasn't pretty!  

3:30 Pulmonary Function: Next I had an appointment with a respiratory therapist (who was insanely nice and encouraging). We started with an atrial blood gas test which is when they take blood from an artery in your wrist vs a vein in your arm. After hearing it was painful from various people (including nurses) I was really nervous! Luckily, they gave me some lidocaine which made the test way less scary. She missed the first time and had to do the test twice to get a sample. I only felt a bit of pain on one attempt, but the other was painless. After, we had PFTs. I had to do the first one without any inhalers (I had to stop inhalers 4 hours before meeting the pulmonologist). I was having a good lung day and lucked out because my asthma can get out of control. Not taking my inhaler before PFTs was actually one of my biggest worries about the day. We did several lung functions tests which can be exhausting, but having CF, these tests were nothing out of the ordinary.  

6 Minute Walk: Next was the 6 minute walk. We were able to go to a hallway where there were not any other patients which meant I could take off my mask. Whew! The took my vitals then had me walk the hall for 6 minutes as quickly as I could. I then had my vitals taken again before being dismissed. Pretty easy and painless test!

Fasting Again: I could not eat 2 hours prior to my CT scan so at 4 I started my second fast of the day.

CT Scan: The last test(s) of the day was a CT scan of my chest, abdomen, and sinuses. They were able to use my Port so I didn't need an IV which was a huge relief. This was my first time with contrast. The tech explained I may feel a bit of a headrush and then I may have a sensation like I am peeing my pants. He told me a story while he was pushing the contrast into my port which in hindsight I am sure was a ploy to distract me from any sensations I was feeling (and maybe to monitor if I was having an allergic reaction which is very rare, but can happen). I was pretty distracted, but did feel a bit odd in the head and chest followed by a very warm sensation as if I was peeing myself. I was glad for the warning. The test was pretty easy and besides  the port placement it was painless.

The End Of Day 1

That was a super long post for a super long day! Needless to say we were pretty tired by the end of the day!

Pre-Transplant Evaluation Concerns

So I spent the past 4 days at Stanford getting a lung transplant evaluation. For me, the hardest part about going to the evaluation is that every aspect of the process was a complete unknown. Despite trying though a few avenues to learn about the evaluation process (via people who have been through it) I was going in pretty blind. I am a planner. I do not do spontaneous, unknown, unprepared well. So this week was a challenge to say the least. I had eight million questions and nobody to answer them.

I did however, find a blog from someone who was transplanted in 2012 and she wrote a detailed explanation of the evaluation process. Despite her transplant evaluation taking place several years ago her schedule looked almost identical to mine. I read through her post several times as a way to prepare. And even so I had so many more questions. So I am going to go through each day (through multiple posts), but today I wanted to clear up some of my biggest concerns that I could not find addressed anywhere else.

The schedule they give you is pretty intense especially for Monday! I had 8 appointments in that single day. 5 were scheduled and 3 were to be done "at my convenience" throughout the day. My first concern was things getting behind schedule. I was really worried I may end up late to appointments or even completely miss them. I was reassured that if a test was running late we only had to talk to the front desk and they would make the appropriate calls to keep us on track. Also, every time I had a test the tech (or whoever was preforming my test) was well aware from my chart that I was booked for tests all day and they kept things running smoothly. Actually, my first blood draw couldn't be completed because I was there at 6:30am to get my blood drawn and the TB test couldn't be taken until after 8. The lab technician left my case open so when I returned for my TB I wouldn't have to wait in the long line that had formed. Every test up until my clinic visit was right on time. Of course, after clinic was a whole different story, but I will get to that later.

Some of my appointments were scheduled very close together and had different wings for checking in. I have been at the same hospital for my entire adult life and I often find myself lost in the hospital walls because everything looks the same and feels a bit disorganized. I pictured myself wandering lost and late for appointments. Stanford is the most organized and easy to navigate hospital I have ever been to. It is almost impossible to get lost. And if you are confused there are so many people more than willing to help. A janitor walked us completely across the hospital to show us where the heart cath lab was located.

Another really nice aspect of Stanford is that they have valet parking for only $2 more than regular parking. It took so much stress off of trying to find parking and walking to the hospital. It also meant my husband and I weren't separated like we would have been if he dropped me off and then left to park. The parking attendants were so nice and recognized us everyday. Side story about the parking attendant, at one point during my evaluation I stepped outside the side door to cough into my sputum sample cup because I was trying to cough in privacy. The parking attendant just happened to walk by just as I spit a huge loogie in my sample cup. At first I was horrified because...gross, but he just gave me a thumbs up and a smile. I swear everyone at Stanford was so so nice.

Overall, the evaluation went much smoother than  I expected. The last day was rough, but I think that was because we ran into a few issues that I assume are not typical. If it wasn't for that last day I would say the experience wasn't nearly as bad as I had imagined. Even the tests, for the most part, were pretty easy and pain free.

Surprise

Sometimes I look back at my mid-20s and I think about the days that my husband and I were both working. We woke up each morning to go to our perspective jobs, both off to do important things. Joining our incomes for the first time was exciting and we were setting off to build this life together. We were young and naïve and totally clueless to how life really works, but that added to all the magic. We were playing house and figuring out this thing called life together. We felt strong and powerful and ambitious. We made plans of buying houses, having babies and making a beautiful life. The options seemed endless.

And somewhere along the line we made so many dreams happen. We bought a house and had an amazing baby. I started off working and then became a mother. I felt so lucky to stay home and raise that perfect little baby. But as everyone experiences in life, some of our hopes and dreams did not come to fruition. There were sacrifices and losses and grief, but we endured them together. And here I am 10 years later in my mid-30s looking back at the last decade and I sometimes feel a bit as if life went on and I somehow stayed stagnant. As Kaylee has grown older and started going to school full time I notice my limitations due to CF so much more. I didn't go back to work like planned. I still need mid-day naps even though my night sleep is no longer interrupted by a fussy baby. And there are more and more days that I am sick and in bed and unable to fulfill my basic household duties. There are more days my husband works and comes home to do housework and dinner and care for Kaylee while I lay useless in bed. On those days I feel like dead weight. I feel like a burden. And sometimes in the dark corners of my mind I do wonder if sometimes my husband feels a bit resentful of how much more work he puts in to keep our little family afloat. He would never utter those words out loud, but I do wonder if in the dark corners of his mind he wonders what it would be like if he married a healthy person instead.

So when I walked through my front door at 5:00 on my birthday to see my living room full of friends from all different phases of my life and heard "Surprise" ring through the whole house I felt so loved especially by the man who does the lions share in my home.  He secretly had a friend who is a chef make food, and a friend who is a bartender make a cocktail. He secretly invited my friends and coordinated with my sister and mom to get my out of the house. And one of my longest standing friends flew in just for the day to take part in the celebration. And just 5 days before I was scheduled to have my transplant testing done I was so filled with love and excitement that the high carried me through the next few days. And even when I start to get worried or stressed about my evaluation I just have to think of my birthday to remember that I am loved. And when I start to feel that I am less of a wife for not bringing home and income or for having so many "bad days" I can just think about all the thought and work and love that my husband put into this party that was meant to show me how much people care about me before I step off into this new scary and unknown adventure. 

The restrictions CF has put on my life can sometimes make me feel less than. I am such a different person than I was when I was healthier and working and productive according to societies standards. It can be hard to feel as if your life is slowly closing in on you and is made up of treatments and IVs and sick days when you once had a taste of living a "normal" life. But knowing I am cared for and loved just the way I am, CF and all, is forcing me to slowly redefine a successful life.

Kaylee Chatter Part 11

Kaylee and I were talking about her upcoming 7th birthday.
K in an exasperated voice, "I have lived a loooooooooong time."

Me: "Sorry it smells smokey in here. There was something that dripped on the bottom of the oven"
K: "I like the smell. It kinda represents us as a family."
Uhhhh….

Kaylee sleeps with one of my childhood stuffed animals.
Kay, " Whenever I miss you at night I just think to myself I have her in my arms (meaning my old stuffed animal)"

Ready Or Not

The last time I wrote I was feeling a bit lost with all the changes going on in my life and my health. I felt overwhelmed by the whole transplant evaluation and the thoughts of the future. I think I am finally feeling some peace with everything happening next week (NEXT WEEK!!!). I am starting to feel better health wise. I had a cold 3 weeks ago and I feel like I finally got over all the lasting effects from the cold, the weather has turned, and I am feeling more optimistic in general. Kaylee and I have even spent the past 2 weekends going to the park and playing badminton, basketball and volleyball. It has been so fun and her being 6 and completely inexperienced means I can keep up with her with my wheezy lungs! Feeling health enough to get outside and play with my daughter pulled me from my scared and sad state has left me reenergized and feeling more confident with what is to come.

 I am absolutely still nervous about the whole evaluation and the endless lists of tests hey are going to do and how jam packed the schedule is. For someone who isn't in good health the schedule seems very rigorous. I am hoping for more energy than I usually have, that I won't get too lost in the hospital (I have never been) and that things run on time because the tests are booked close together and we all know how slow hospitals can be. I am not sure what to do if we get delayed and start missing appointments! But despite these little worries I do feel like I am ready for the tests. I keep reminding myself I have gone through scary and painful procedures before and I came out the other side okay. This won't be any different. Scary and maybe painful, but doable. There have been so many other CF patients who have done it before me and so I know it can be done.

In other news, I turn 35 this week. I honestly am not sure how I got so old! Not that 35 is necessary old (although in CF terms I guess it probably is). It is just that life seems to be going by at an incredibly quick rate. I remember my mom's 40th birthday as if it were just a few years ago and somehow here I am halfway to 40, but how could it be possible that much time has passed? I imagine it will just keep marching by and I so hope that I get to be around with these lungs or donor lungs for a very long time!