Contemplation, Columbus, & Cake

Yesterday was a long day. Jodie got the call yesterday morning that she was being listed, and she let me know soon after. I knew that we would be getting that news, but actually hearing it really brought it home. I struggled to keep my focus on work for the rest of the day.

That afternoon, I had another contractor come by to give us a quote. He was very helpful, transparent, and thankfully much lower cost than the previous contractors that had either quoted out of our price range or wouldn't consider such a small scale project (I hope we can move forward with this project soon).

We were happy to celebrate Jodie's birthday, but we had packed a lot more into the day than we anticipated. We had planned a last-minute trip to Columbus this weekend, that had depended on waiting to hear from doctors before we booked anything. When Jodie got home from work, we finalized packing, settled Stella in with our neighbors, and headed to the airport.

The flight boarded at 7:30 pm, so we didn't have long at home before heading back out. Lack of prior planning resulted in the need to scrounge for adequate airport food right before our flight. Not ideal considering Jodie's dietary restrictions, but we managed to make it work with steamed dumplings from one place, and a crackers and cheese package from another. We will need to be better prepared to prevent this sort of scrambling for food; especially since Jodie's diet will be much stricter post-surgery.

The airport was deceptively large, and by the time we reached the gate after getting food Jodie was wiped out. I got permission from Jodie, and went to the Delta person at the gate to ask about getting a wheelchair available for us upon landing in Columbus. It was a good thing I did, since after landing we needed to traverse what felt like two stories of switch-backing ramps from the plane into the airport proper. We will definitely need to request something similar for our return flights.

In Columbus, we were met outside by my parents who drove us back to Sarah's place to meet the baby. I always enjoy getting to spend time with my mom and dad, and having their physical presence and hugs was comforting and very welcome with the recent events. To some extent I feel rather isolated in North Carolina so far from family, and despite living elsewhere for the last almost 10 years; it still feels like I'm coming "home" to Ohio. We only overlapped with them for a few hours before they went home and then left again to travel to Maine for a couple days to check on the new house they bought recently.

When we arrived at the Welch residence, Jodie and I finally got the chance to meet our new nephew Mason Anthony Welch. As soon as she could, Jodie was seated and ready to receive little Mason into her arms. Right now she really shouldn't stand or walk and hold him, and probably couldn't for long. Then we briefly and quietly (there was a sleeping Leah child in the house) celebrated Jodie's birthday with a delicious red velvet cake with cream cheese icing.

It warms my heart to get to see Jodie with a baby in her arms. The sight gives me hope and I pray we can be so blessed to have children of our own someday. Jodie would be a great mom, and I would love to be able to raise children with her. I can't wait for her to have the energy to live life fully with a healthy heart, and I'm looking forward to having a family of our own.

Happy Birthday to my beautiful, caring, loving, supportive, wonderful wife. I'm so blessed that I have her in my life; seriously, she's the best.

And the beat goes on

I turn 37 today. This morning, around 10am, I got the call that I am officially on the transplant list. With everything going on, it's made me fairly contemplative about my heart. I've vacillated between being frustrated/upset/angry that my heart is only going to last 37 years, and being in awe of the fact that it has lasted 37 years.

When I was born, my heart had a Shone's complex. We found out when I turned blue at 8 days old. This condition is made up of 4 separate congenital heart defects. My parents were given a 4% chance the experimental surgery would work, and they took it. A year and a half later, they had that same choice - 4% chance I could grow up. My heart has never been whole - but it's kept beating. Despite early surgeries, it gave me a fairly normal childhood. I danced, played, cheerled, swam, and mostly kept up with my brothers. It needed some help with medications in high school and college, but I graduated, was over involved, and I lived out my hopes and goals.

At 23 I went into heart failure after a valve replacement that I thought would make things better. Then my heart stopped beating on its own. But a pacemaker (then pacemaker/defibrillator) and lots of meds allowed me to finish grad school - at least my masters - and work. I was tired, but I could still do some dancing, and I was able to work full time. Despite being told in 2008 that I would probably need a transplant in the next five years, it's lasted until 2020. In that time I moved from WA to RI, landed my first full time job, got Stella, met Peter, got a master's in social work and two licensures, got married, moved to NC, bought a house, and had countless memories made. 

So really, I'm in awe. My heart was broken to start with, fixed in new ways they weren't sure would work, and yet has given me a full, happy life thus far. Yes, I can’t remember the last time I just had energy and didn't have to worry about using it up, but I knew there was a time I did. I've been able to work and live my life, albeit at a slower pace, and in a lot of ways it's made me a better person. Just today, I was able to travel to Ohio to meet our new nephew Mason. Granted, I needed a wheelchair to meet me at the gate because the walk was too far, and I had to sit down to cuddle the baby, but I still was able to make it.

So while part of me hates that my heart can't stay with me, I also can't help being grateful for how far it's gotten me and all I've been able to experience and accomplish with this little heart that has had the odds stacked against it from the start. Despite only working at 25% since 2007, it's gotten me here in relative health. I appreciate all it's allowed me to do and that it keeps performing against the odds. While I'm looking forward to my next heart being healthier, I hope it has the same work ethic as my current one.

Tomorrow

I got the call today that they have enough information to list me for a transplant. I will be listed at priority level 4. I had a short talk with the transplant coordinator, then went back to work. A little while later my cardiologist called and let me know a little more information and that if I start getting/feeling worse we can do some things that might help and bump me up the list (but would require staying in the hospital). A little later the nurse called back to say my insurance requires a letter of medical necessity before they will clear me to be listed, and she was sending it in (around 3pm) and asking them to prioritize it. She said that I could be listed tonight if they hear back, otherwise tomorrow morning. No call as of 9pm, so I'm going to be listed tomorrow, on my 37th birthday.

I think it finally started hitting me when I got the call. I was offered to go home, but didn't go because I didn't want to just be home by myself with nothing to do.  I was definitely a bit distracted for the rest of the day. I got home and got a really good hug from Peter. We made dinner, and after I was still hungry. I wasn't feeling up for being with people, but also did not want to be alone. I asked Peter if instead of going out with his friend as planned, we could go get something I will not be allowed to have after transplant.  He was very supportive and took a rain-check on his plans to be with me tonight, and we went out and shared two dozen oysters and a slice of key lime pie. I don't usually, but I decided to enjoy a glass of Moscato. We toasted to the things we will have to leave behind, and the new things to come and look forward to.

Things change, things stay the same

Today was my first full day back at work in the office (I worked from home yesterday). It felt good to get back in, and today was my med/psych clinic day, which is my favorite day. I was able to get through email by the time my first patient arrived. After two sessions, it was lunch time. I ate lunch with my coworker and filled her in on things. I then had a free hour before my next patient, and as I was doing notes my email alerted me to test results in mychart (the online patient portal). As I checked the lab results and went through things, it struck me as a little odd to be looking at the results while sitting in the office. Even though my health has effects on my ability to work, in some ways I guess I had compartmentalized the two.

In terms of planning for being out for the surgery, I have already told all my long term patients about needing transplant and giving them the option to stay with me until I'm out, then bridge the time with one of my colleagues, or just switch to someone else now, or whatever else they prefer. 4 of my regulars have already said they will stay with me. While I really enjoy working with my patients, I also let them know that if they felt like transferring made sense, I would fully support that as I want them to get the care they need.  I can imagine that the stress around having your therapist go out on leave suddently, especially when you yourself are dealing with a chronic illness, could be a lot. One of my patients, who in a lot of ways reminds me of a young me and I really enjoy working with, decided it's best to switch sooner instead of waiting. When the patient told me, I had a moment of being really sad. I of course didn't let the patient see that, and I think it makes a lot of sense given the issues and the potential stress of them seeing what is happening to me.  But it still hurt a little.

I think I've done a really good job about being logical and planning things, and while intellectually it all makes sense, it still hurts that I have to be offering this.  I'm not hurt that my patient made the choice, but I guess it's just really hitting home that things are changing.  I was hired a little over two years ago to work with med/psych patients, and while I've done that, it is literally only this week that I've fully had my clinical time with this population.  And the first week of that, as I've gotten a really great caseload of patients who I care about, I realize that it is going to change and that even though fom a clinical skill standpoint I may be a great fit for someone, my personal health situation may make it so that I'm not the best person to work with them right now.

In some ways a lot of things are the same, but this is also showing me how much is slowly changing - and making me realize that at some point, it all quickly will.  I feel both ready and at the same time completely unprepared for the changes that are coming.  

Reflections and Thanks

We have moved into Step 3, which is waiting while for the doctors to look at the results, decide if they need more tests, and then decide how severe things are so they know both how to list me and what the plan is going forward.  We thought this would be a good time to reflect on the process thus far.

Jodie: In some ways it seems like this has been going on for awhile, and in others it seems like this happened really fast.  In reality, it has only been 16 days since my doctor called to say that we needed to do the evaluation, and now it is (most likely) complete (unless they need other tests).  Some of the days went really quick, and others felt like they took forever.  I was completely wiped from the 3rd day of the eval, but not the others.

Peter: To me, it seems like the past 16 days have individually dragged on, but collectively flew by. The intensive evaluation period seemed like so much was so densly packed into such a short period of time; that it doesn't feels like we're at the beginning of the process anymore. Nevertheless, when the transplant team reviews the results; they will be able to lay the groundwork for how we will be spending the time (for example, if we have to do other things) while we wait for a match for Jodie to become available.

Jodie: Right now I'm feeling grateful that this has happened already.  I am also grateful to my boss and co-workers for looking out for me, helping change my work responsbilities so that whenever I get the call it will be easier to manage.  I have had so much love come in via facebook, text, the mail, etc, and it makes me both appreciative and humbled.  Thank you to everyone who is walking on this journey with us.  I didn't realize that knowing I'm being supported by people from all parts of my life would make such a difference.  Please know that I have appreciated and cherished every comment, like, etc and it helps to keep up my spirit as we go through all of this. We have been writing a lot since it is so early in the process, and while I'm finding being able to share helpful both in explaining to others/keeping them up to date and in my own processing, don't be worried if it slows down a little as we are more in the waiting periods.

Peter: It's exciting things are moving quickly and so far so smooth... Duke really has their shit together, and it is refreshing to be able to see the way forward using such a well planned methodology. That being said, I'm often finding that I'm feeling overwhelmed and I need to sit down or step away to process. It's a stressful situation all around, and I constantly feel like I'm behind or not as prepared as Jodie. I'm worried about stepping into the role of the caregiver when it comes down to getting the call... will I be ready? Will I know enough? Will I be prepared to deal with all of the information, all of the things that have been done, all the things that will need to be done, and all the unknown future things for which I can't even expect or prepare? I may not always have the bandwidth to respond or communicate if you reach out to me; but it is absolutely appreciated and extremely helpful to keeping me going; and with your support I feel like I will be better able to support Jodie. Thank you to everyone who has reached out to Jodie and myself, and I'm so thankful for the support we have received.

And now . . . . we wait

Today was the last day of the heart transplant evaluation.  What was weird is that for most people, this is the first day.  We decided to leave nice and early so we could grab something to eat when we got there.  Traffic was not too bad, but when we arrived two out of the three gate to get into the parking lot were not functioning.  It led to a little traffic jam, but luckily everyone was being polite and we were able to get in safely. We headed over to the cancer center cafe and got breakfast smoothies, then back over to our main clinic, 2F/2G.

I checked in, and got called back to give a urine sample - actually two.  Word of advice - if you ever need to do this in two seperate containers, take the lids off beforehand so it's easy to switch, not just loosen the cap. I saw the kind clinic nurse who had drawn my blood from the IV on Friday, and I was able to thank her again.  She seemed happy that the IV stayed intact and I was able to successfully get the CT scan.

After that it was back to the phelobtomy lab.  The woman who was helping me on Friday was not there yet, and the new person could not find the orders in the computer.  I explained how they had left orders open and the first person was saving the labels.  The new phelobotomist had to go find the transplant nurse from Friday (luckily I remembered her name), and they were able to get labels re-printed.  It turned out I needed 11 more vials drawn - much better than the original 26 in one day.  The phlebotomist was good, and we were able to get it all in one stick.  After she got all the labels on and confirmed I was done, I headed back to the waiting area.

Peter was standing with a group of 6 other people.  Apparently, there were 4 of us there today to "start" the heart transplant evaluation.  We all fit into the elevator (with 3 people in wheelchairs) and headed to a conference room one floor down.  While there, the nurse coordinator ran through more about the process.  There are 7 different nurse coordinators, and as luck would have it, the one doing the presentation is the one with last names N-O, so she is mine (and the one I've been talking to on the phone). For us, a lot of this was not new information given the other appointments we have already had.  There were a few clarifications though.

1.  I can choose if I am willing to take an organ from a '"high risk donor".  This means that the person either has a medical history that might make them more at risk for things like HIV and Hepatitis, or there is an unkown medical history.  The donors would test negative for these infections at the time the organ is harvested, but there is a very, very, very small chance that they are actually infected and it might show up later.  I think the chance was less than ten perecent of 1% - so very, very small.  They have never seen a case at Duke (or in most hospitals) of someone catching HIV from a heart, and if someone does develop hepatitis there are now good medicines to cure it.  For now, I chose yes, as this increases the pool of donors and could lead to a sooner match.  Before I would say yes to an offer, we would get this information and I'm allowed to change my mind.

2.  After surgery, I will come out with lots of tubes and may look a bit "puffy" given all the fluids they will be giving me.  The goal is to get the breathing tube out when I wake up and am strong enough, usually between a few hours and overnight.  Then in the next few days, they will get me up and walking.

3.  After I go home, I will have weekly appointments for lab work, seeing the doctors, and then a biopsy of the heart to check for rejection.  The nurse coordinator told us that everyone gets rejection at some point, and there are medications that help with this.  After the first month, appointments go to every other week, then once a month, then three months, then six months, then eventually a year.

4. Due the the immunosuppresion,  they are going to suggest that I pretty much stay home for the first 1-2 months.  Depending on the season, it will be more/less safe to be in crowds (winter is worse with cold/flu versus summer).  I believe that going to less crowded places will be ok, and if I do have to be out I will need to wear a mask.

5.  Six weeks after transplant I will start cardiac rehab to get stronger, and by 8 weeeks out I should be safe to drive again.

After that, an occupational therapist came in and brought with her some HUGE pill containers - they had four slots for each day with different times on them.  This is the pill container they will give us when we go home after transplant.  We were given 5 pill bottles with labels on them giving instructions.  Our job was to fill up the pill box correctly.  Each pill bottle had a different color of plastic bead in it.  One you took once every other day, another daily with breakfast and dinner, another every morning, a fourth 3 times a day, and the last one daily before bed.  I finished it and was trying not to laugh, as I've created games like this for work to teach the teens about how to fill a pill box.  At least when I've done it, I give them candy as 'pills'.

We then had the social work appointmnent, and it was pretty basic.  We talked about our plan, who my primary and secondary caregivers will be, emergency contacts to call when they find the heart, and how I'm coping.  Once again, it was a little weird to be on the patient side of the room as this is not that different than some of the evaluations I've done with my patients.

We finished around noon, then headed over for Peter to meet my other friend/colleague who works at the hospital.  We had a quick call to the transplant coordinator, since we had not been able to talk with her one-on-one earlier.  We had been wondering if it was ok for us to go meet our nephew Mason this weekend in Columbus, OH.  He was born two weeks ago, but I had to work the last two weekends.  On the one hand, we did not want to go if I'm listed, but on the other hand, we really want to meet him when he is still a baby.  The nurse coordinator checked in with my doctor, who said to go. After that, we were hungry and went to get some Thai food.

We took advantage of both having the day off and were able to go to a tile store, and two kitchen and bath places to help us get closer to a bathroom plan.

And now . . . . we wait.  They should discuss me on Thursday morning.  If they have enough information, I may be listed.  If the team feels like they need more information, then they will send me for more tests.  Either way, the doctor said I should go meet Mason as once we get to next week, then they are most likely saying I should not go further than 4 hours from the hospital.  If we did decide to go on vacation I can go into an "inactive" status, but it does not lose my place on the list, just means they won't take any offers for me.  Once I'm listed and we have a little more info, we will do a post all about that. I should get a call Thursday afternoon with more information on what the transplant team thought.

Thanks for all the check-ins and well wishes.  It definitely helps to know so many people are supporting us from through journey.  Hugs to everyone!

Nutritious, Delicious, possibly Treacherous

I went with Jodie to the appointment with the nutritionist this past week and it was a lot of information to assimilate. Due to being immunosuppressed, she will need to be very careful to reduce risks of food-borne infections. From how I understand it, after the surgery she will be on multiple medications - for the rest of her life - that will purposefully suppress her immune system so that her body does not attack the transplanted heart. As the heart would be detected as an intruder, her immune system would  attack it and that would be bad.

Some of you may know of the neutropenic diet; however this is thankfully not quite as strict. Essentially, all of her food will need to be thoroughly de-contaminated before consumption. The easiest way to do this is to cook everything, but we will have a little flexibility with fresh fruit and vegetables that have been very carefully washed.

From what I understand of the biology (admittedly not a lot beyond "cells are squishy"); bacteria can grow on almost any exposed surface, much more quickly with an energy-source, i.e. food. In order to mitigate the risks of bacterial growth, we will need to be very careful to not let her food become contaminated between preparation and serving. One of the things we are going to need to get used to will be when serving meals with many other people, Jodie will need to serve herself or be served first or she won't be able to eat.

Below is a list of some broad-strokes don't do items - with some examples of how they apply to our situation.

1. No buffets - high risks of the food being contaminated by other people and because it is sitting out for a long time
2. No raw meat - raw sushi, raw oysters, and rare meat not recommended
3. Nothing unpasteurized - most goat cheese, some other cheeses, some juices and ciders, and raw/runny eggs (fully cooked with firm yolk is ok; or pasteurized eggs)
4. Nothing fermented/pickled - pickles, miso, those yummy eggs in ramen, sauerkraut
5. No cold meat - lunch/deli meats, lox
6. No nuts/seeds in shells - nuts and seeds will need to be shelled and roasted
7. No herbal products - can affect some transplant medications in unexpected ways

As mentioned before, none of this was too surprising; however there were some items we did not expect (like no pickles, miso, or eggs over easy), and some things we knew about but Jodie is dreading not being able to eat (sushi, oysters, raw cookie dough). Additionally, Jodie is going to need to continue with her current low-salt diet: salt makes you retain water, which means the heart needs to work harder. 

So in the coming however long it is until transplant, we would love to be able to make the most of the foods that she won't be able to enjoy after the surgery. If you're local, feel free to let us know if you want to go out to eat for some of these foods that Jodie is most likely to miss not being able to eat.  

It's snow problem

I've been keeping an eye on my Duke email, since I get the insider scoop on closings. As as 10pm last night, the severe weather policy was in effect until 10am, meaning clinics won't be open until then. I assumed that my 9am nutrition appt  would need to be scheduled, but everything else was after 10. Sure enough, I got an automated call before 7am saying my appt was cancelled and I would be called to reschedule.

Peter and I both got some work done from home this morning, and then headed to the hospital. We gave plenty of time to get there just in case the roads were bad.  We ended up getting there at 9:07, and when I got over to the clinic it had a metal gate down with a sign saying they were opening at 10.  Peter went back to the resource room to set up, and I sat and read until they opened up.

I got called back for an EKG, which is when they put ten stickers on your chest/extremities that wires can connect to, and then they record the electical beats of your heart.  This usually only takes about 5 minutes.  Next up was an echocardiogram, which is an ultrasound of the heart.  The ultrasound tech was nice, and as we got to talking about work, it turns out her roommate may be a good fit as a coach in our cardiology peer coaching study at work.  That was unexpected but cool. It's always nice when the tech is talkative; it makes it seem like the the time passes quicker. We got through a lot of the echo, but there was one area that was not easy to see. When they can't get a good image, you need to get an IV so they can inject a chemical into the blood that gives a clearer picture.  The ultrasound tech called the nurse to put in an IV.  I knew I would need one later for the CT scan, so it wasn't too big of a deal.  I tend to be a hard stick, as I have small, valvey veins.  The first person got the IV partway in but it would not go all the way into my arm.  A more experienced nurse came in and tried to salvage it, but ended up having to start over somewhere else.  She was successful, so we were able to finish the echo.  Overall, I was in that clinic for about and hour and a half.

I headed over to the next clinic to check-in for my 12pm appointment with the transplant psychologist and decided to get my labs done early since I had 30 minutes to kill.  When I went back, the phlebotomist told me that I had one lab for today, and 26 for monday.  She decided to ask a transplant nurse if they could draw some of those labs today.  The transplant nurse saw I had the IV, and suggested the maybe they could draw some from that instead of sticking me again.  It was getting close to noon, so she said she would check on it while I headed up to see the psychologist.

The psychologist was nice, but it was somewhat surreal to be in the appointment.  Technically we work for the same department, and I have a similar role to him but with some of the pediatric patients.  The appointment went well, but there were definitely a few moments were we both stopped and had a laugh as we recognized that it was more the "therapist" me talking.  I got a phone call during the appointment from the nutritionist, and we recheduled for 1:15.  I quickly texted Peter to ask him to grab us lunch.  We finished the appointment and I think that we covered everything.  I wasn't worried about it, but still good to hear that the psychologist had no concerns about me being able to cope through the process.

Then I went over the cancer center cafe and met Peter for a quick lunch.  The cafe is called the "tropical smoothie cafe", and I was surprised that the chicken salad had pineapples in it.  The sandwich was delicious, and after we both finished it was back to the main clinic to meet the nutritionist.

This was the one appointment today that Peter was supposed to be at with me, and that he wanted to be regardless.  We went over my low sodium diet, and reviewed a lot of restrictions that I will have after transplant due to being immunocompromised.  We will have to have a whole blog post to go over this, there was so much information.  Nothing was unexpected to either of us, but it was still good to have someone review it all and be able to ask questions.  Now that we know, we can start doing some meal prep to put things in the freezer.  While I was in this appointment, the transplant coordinator called to let me know they were able to reschedule my CT scan to 3:30pm, instead of having to come back at 8:30pm. 

Peter headed back to the resource room to do more work, and the nutritionist helped to find the transplant nurse, and we were able to verify that they could draw the labs out of the IV.  They found the most experienced clinic nurse, and the phlebotomist came too.  There were 26 tubes, multiple syringes, and some other things that could be needed.  The clinic nurse was able to draw out blood into small syringes, then would hand it over to the transplant nurse who would give her a new syringe and hand over the full one to the phlebotomist.  Apparently there is a specific order certain tubes have to be filled, so the phlebotomist was then able to use the syringe to start filling tubes. They got the one filled that had to be done today, and then just started filling others.  After 6 syringes of blood, we decided we should stop, as I needed the IV to work for my next thing.  With that, they were able to fill 11-12 of the tubes.  It wasn't all of them, but a lot that I won't need to do on Monday. I am so, so thankful to the nurses and phlebotomist for going out of their way so I would not need another stick - they did not have to do that, and their kindness was something I didn't realize that I could use at the time.  I've felt confident about the team during this process, but this really helped me to see how much they care about their patients and are willing to take the extra steps.  I'm lucky to be receiving care here.

Next, I headed over to the cafe to hydrate, then went to check in for the CT scan about an hour early.  They were able to bring me back pretty soon, and since I already had an IV it was quick.  I got on the table, they moved me into the machine, and then we did two scans.  The machine has two face images that when you look up you can see.  The light up the one to breathe when they want you to do that, and the one to hold your breathe when it is time.  They got images twice, then the CT nurse came and injected the contrast dye through my IV.  That helps give a clearer picture.  It also feels really warm, as as it travels through your body it pools in your pelvis area - or at least it feels like it.  So after the contrast, you basically feel like you are peeing on yourself but you aren't.  It's a weird feeling, to say the least.  This was done quickly, and then the CT nurse took out my IV and I was good to go.

I went to find Peter, and I was so tired that when he got a wheelchair to take me to the parking garage I didn't protest... would have been a bit of a walk.  We got home and I relaxed on the couch catching up on a couple episodes of Marvelous Mrs Maisel on Netflix.  Now on to dinner.

Tomorrow morning I have to go to the dentist for the filling at 8am, then I go into work since we are running part 2 of the coaching training.  We will see how I'm feeling at the end of the day.  Tonight I'm looking forward to going to bed early. 

Radioactive

Today is the second day in step 2, which means lots of tests.  Peter drove me in and then went to find a place to set up his laptop to work while I went to radiology.  First up was a lung ventilation and perfusion test.

The goal is to see how your lungs are working, and it consists on three parts.  First, I got a chest x-ray. Then I went into a nuclear medicine testing room. There was a machine that had a long table that moved my legs into a circle, so that my chest was between the part that takes pictures. I laid on the table with my feet towards the whole, and they moved me in so I was between to the plates.
For the second part in there was a mask that was put over my face and I breathed in radioactive air for a few minutes while they took pictures, then continued to breathe room air for some more minutes to see how my lung ventilation (how air moves in and out of the lungs) is working. After that I was injected with a radioactive solution into my vein, and then they took a bunch more pictures. This was to look at my lung perfusion, or how well the blood flows through my lungs. For this third part, the machine was re-positioned and turned around me a few times to get different angles. And apparently, I'm slightly radioactive for the rest of the day.

Since I'm always bionic due to my heart valve and pacemaker/defibrillator, that means today I'm bionic AND radioactive!

The second test was an abdominal ultrasound. I've had hundreds of ultrasounds of my heart, but I'm not sure if I've had one of my abdomen. The ultrasound tech came in and as we got to talking, it turns out she has a 7 year old daughter with congenital heart defects. She thought I looked familiar, and we realized I gave a talk for the heart patient parent group a year ago she was at. Small world! The scan looked at my kidneys, liver, pancreas, gallbladder, and bile duct to make sure it all looks healthy. 30 minutes and we were done!

At that point I was a bit hangry, since I wasn't allowed to eat anything this morning in preparation for the abdominal ultrasound. I got a chocolate chip bagel and cream cheese, scarfed it down, and then went to find Peter. He was in the resource room in the Duke Medicine Pavilion, which has some nice desk space with computer hookups, couches, etc. He was at a stopping point, so we walked over to the children's hospital to see a few of my friends/colleagues who have offered to be there to support us when we get the call if it's during the day (since they are here most days). I figured it would be good for Peter to meet them now. After a quick hello, we headed to the cancer center cafe where Peter got a sandwich and I got a smoothie. I think this may be the best food option on the hospital campus, they even had nutritional facts for every item on their menu. I had an hour and a half until I needed to check in for the next test, so we headed back to the resource room. Peter got back to work and I started on Hilary and Chelsea Clinton's "The Book of Gutsy Women", which Aunt Elaine and Uncle Brad got me for Christmas. I'm liking it so far, and since it's short vignettes; it's easy to start and stop.

Then it was time for a pulmonary function test, or PFT. This test measures lung volume, capacity, how air is flowing, and how well my lungs remove CO2 from the blood by putting in oxygen (gas exchange). For this test, there is an apparatus I put in my mouth that is connected via tubes to the machine and computer.  When we are ready, clamps go on my nose so all the air I breathe goes into the apparatus. They have me breathe at different rates - for example, take 4 normal breaths, then take a deep breath and push all the air out fully (can take up to 10 seconds), or take a deep breath and then huff and puff by pushing air out quickly for 10+ seconds, while they get data throughout. These things are more tiring then I expected.

Our last meeting of the day was to find out how much this will cost. Thank God for insurance. Without it, this process (evaluation, transplant hospitalization, a year of care after) is over a million dollars not counting medications. I chose the PPO health insurance plan, which let's me get care anywhere and has an out of pocket maximum. So thankfully, I'll only pay that amount (which is much smaller and I've already put aside), plus the medication costs. I'm glad I know about insurance and made the choices I did during open enrollment, or this meeting might have gone a lot worse. Some plans have you pay 10% of all costs, which would be astronomical.

Now we are home and trying to relax. The weather forecast it's calling for a few inches of snow. This may sound like nothing to everyone up north, but down here that means things may shut down for multiple days. We are hoping it is not too bad and that they don't cancel my appointments for tomorrow. 

So, assuming that nothing gets cancelled due to weather, next up are 2 heart tests, labs, and appointments with the nutritionist and transplant psychologist tomorrow.

First Appointment

Jodie: Normally the transplant evaluations take place across 4 days, starting on a Monday and meeting with the social worker/transplant coordinator the first day.  Because I work in the medical field, already have a fair amount of knowledge about the process, and usually have patients on Tuesday/Wednesdays, they decided to let us start at the end of the week.  We had the first visit today, and it was with the tranplant surgeon. 

It's the same clinic waiting room I'm used to going to, but on the other side.  We started off by meeting with the transplant surgeon's physician assistant.  She was really helpful and gave us a lot of detail before we saw the surgeon.

Peter: From the perspective of support and caregiving, most of my questions were regarding logistics and prodecures. The rough order of operations will be: locate donor heart > match patient with heart > call patient in > prep patient for transplant > evaluate heart for suitability > begin surgery. However, there is a possibility that at any point in these steps they determine that the heart is not suitable, they will not follow through with the surgery. They would call this situation a "dry run," and we have been told to expect this as a possibility, but not necesarily likely.

When Jodie goes in to be prepped to surgery, I will be provided a pager that will give me regular updates throughtout the entire procedure. They estimate that from the point in which Jodie goes in until the point they contact me to come back to her side, it may be upwards of 10 hours.

Jodie:  On my end, having additional details was really  helpful.  When I get the call, they will give me an idea if we need to come in right away, or if we can take a little time (like go home, let out pets, come back in one car), and that will be based off of how far away the donor is - although they won't tell us specifics.  Once there is a donor, that information goes into the national United Network for Organ Sharing (UNOS) system and they start looking for a match.  If no one else who is a higher priority rating can use the heart, then I would get the call.  One of the Duke surgeons would go to where the donor is and evaluate the heart to see if it is suitable.  While that happens, I'll get to the hospital and start being prepped.  Until the surgeons think things are good to go with the donor heart, even if I'm back in the operating room, they won't really start. Once they have the go ahead, the surgeon still at the hospital will begin to get things ready, with the goal that as soon as the donor heart arrives they can implant it.  The actual surgery time is probably between 6-8 hours, but it will be longer that I'm in the OR and before Peter can see me.  After the surgery, I will be in the ICU for at least 1-2 days, and as I wake up and am doing well they can slowly take me off of machines.  Then I would go down to the cardiac floor for the rest of the hospital stay, which could be from 1-2 weeks long before I go home.  Overall, I think we both learned a fair amount and feel confident in everyone on the team so far.  We had a few "worst case scenario" fears and they had good answers for all of them. 

Peter: Today was day one of step two in the process, and it was mentally exhausting. Thankfully this evening we also had a small group bible study with folks from the church we go to together. Being able to talk through some of what we learned helped us a ton with processing everything from the appointment, and I feel we are very blessed to have this supportive community.

Tomorrow will be a long day. I am going to be driving Jodie to the hospital in the morning, working remotely from there for most of the day. While we are there, Jodie is scheduled for 3 tests and an appointment with the financial care counselors. 

Thanks for walking with us through this journey, and please keep us in your prayers these next few days.  We are personally praying for patience and to stay hopeful/optmistic.

Bathroom Remodel

Since we knew that transplant was a real possibility, there have been a few things we knew we need to get done.  Jodie got her haircut, we got the new bed and set up another guest bed, the quilt is on the way, and the last big thing we need to deal with is our bathroom.  When we moved in we knew eventually we would re-do it, but it was lower on the priority list.  Given that one of the walls is a little "squishy" under the tiles, we are a little concerned that there is mold or some water damage.  Knowing that after transplant I will be immunocompromised, mold is not going to work.  Also, knowing how long the recovery is from open-heart surgery and how hard it is to use your arms, we thought it would make sense to swap out the tub for a shower with bench and get a fixture that has both a showerhead and a handheld wand.  Depending on what is healing, I may not be allowed to take a full shower/get everything wet, and this will make it easier to feel clean. 

We started planning and getting quotes in November.  After hearing a few that were out of budget, we decided to DIY this bathroom too, since we had done the other one. Peter even found some great hardwood floor looking ceramic tiles at ReStore. Now that we know our timeframe, we have re-thought that out.  Peter had a contractor come out this morning and we are hoping that they will work out to re-do the bathroom.  If any of our NC friends know of a good bathroom contractor, we would be happy to talk to them.  Our hope is to pick someone in the next few weeks and start working on it, so that if we get the call on the sooner side the bathroom will be done. 

Dentist and Therapy and Quilting, oh my!

Today was a busy day.  One of the things I learned last week is that in order to be listed for/get a transplant, you have to be cleared by the dentist.  Why, do you ask?  Dental care is actualy really important for heart patients.  Mouths are pretty dirty, and cavities and problems can lead to infections or bacteria getting into the bloodstream, which can be really bad. I've actually had to take antibiotics before any dentist visit my whole life.  So in order to be cleared for surgery, you need a recent dentist appointment and no issues.  The dentist I had been going to down here (who I was not loving) could not get me in until March 7th, so I switched to the office Peter goes to.  I left work early to get a cleaning, and things are pretty good.  I need to get a small filling for a weird indent thing on the front of one of my bottom teeth, but they are doing that Saturday morning so I'll be good to go in terms of the letter and dental clearance by next week.

I then worked from home as I had a lot of calls for our coaching research study to do (I'm supervising some of the coaches).  After that, I had a little bit of time to work on a quilt for our bed.  I started quilting in college, and it is one of my coping strategies and favorite hobbies.  When we got married, I had a quilt I had made myself, and Peter had one I made for one of his birthdays.  We decided we should have one that was "our" quilt, and we bought fabric on our honeymoon in 2017, but I have not had the time since. One of the other things Peter and I did to get ready for this process was upgrading our bed to a split king.  The choice to get the split version was mostly because I like a soft bed and Peter likes a hard bed, and we couldn't find one that agreed with both of our backs.  It's a good thing it took me so long to get working on the quilt - otherwise it would have been the wrong size! We decided that we should also get the adjustable frame, so that once I'm healing it will be easier to get out of bed.  Fun fact - post open heart surgery, you aren't allowed to use your arms to push your body weight up (too much pressure on your chest), so you have to just use your abs.  It is hard to do, and the adjustable bed will help.  I was successful in finishing pieceing together the quilt top, and now just need to quilt the sides together and do the binding and we have a quilt!

Then my therapist came by for our bi-weekly appointment.  I have been in therapy a fair amount since going into heart failure, and I'm a big fan of it.  It helps to work through thoughts and feelings I'm having, and its good to have a neutral party to talk to.  This therapist is new (to me), as I decided in October it made sense to start looking, and to get in at least some sessions before things got crazy and before I actually get the transplant.  I'm liking her - and she comes to the house, so after surgery I won't have to stop when I can't drive since she can come to me.

At the end of today I'm feeling relatively calm and waiting for all of this to really "hit" me.  I have a feeling some time Thursday/Friday/Monday in the midst of all the tests and appointments it will.

My notes and perspective

Jodie and I have been through a lot together, and I have loved every second of it. I have learned more and more over the years about her and her heart, but I cannot fully grasp the amount of knowledge and experience she has acquired through living with knowing eventually this time would come.

I am learning as much as I can about this process as we go, and I try to take notes during most of the appointments I attend with her and her doctors. I am planning on keeping the blog updated with the layman's terms and the my-perspective notes from an involved party with less of the specialized knowledge that she has.

We knew things were rolling in this direction over this past summer, and when we went in for her 6-month (twice-yearly) follow-up in August, her doctors scheduled her for a two-month follow up; which was much sooner than her regularly scheduled appointments normally were.  In October, we sat down and were told much more directly that if things weren't improving (either declining, or staying the same), then we may have to look down the transplant route.

In January this year, Jodie went in for a stress test to determine how well her heart was working. At the following appointment with her doctor, we had a combination of mixed results that were not conclusive. By that I mean that while the stress test numbers were better than expected, but they did not match her symptoms, which led her doctors to believe that they needed more information before we could make a decision to move forward. We scheduled Jodie for another stress test, but a more invasive one that would also measure pressures in her heart while exercising.

February's test was a couple weeks ago, and we expected to get the results from the doctor early the following week. However we received a call from her heart doctor on Sunday afternoon (last week), and he told us that he was cancelling her appointment for Tuesday. Jodie was told that the tests definitely came back conclusive, although much more severe than anyone would have expected. She should expect to start getting calls for scheduling tests and examinations to evaluate her for the transplant list. At this point in time, she is scheduled for 6 tests, labs and 7+ appointments over the next 8 days. After the results from the evaluations are in and processed, the transplant team will meet to review the information and decide what priority level Jodie will be on the list.

I will be with her during most of the appointments, and I will be taking more notes.

Short Hair

As you may have noticed, I have short hair now.  Very short hair.  We have known since October that I would most likely be needing a transplant this year.  I had a haircut scheduled for the end of January, and was thinking about my last big surgery.

When you're recovering from open heart surgery, it hurts.  Having to move your arms above your head stretches the area that is healing, and it's not the most fun feeling.  Last time I got my hair cut short enough that it just went into a ponytail  While that helped, it was still a lot of work and I often got tired trying to do it or needed help. My hair is very thick and heavy, so it's a lot to deal with.

I decided that this time I would try something different, and very short, as it would be easier to manage.  My mom and I started looking at photos online, and I was inspired by Kari Russell (who played Felicity and I was told I looked like in high school because of my hair).  The photos from when she chopped off her hair were really cute, and I decided to go for it.

Alyssa at Arrow Studio in Durham did the cut, and I'm really liking it.  It is very easy to manage (and will be easy to deal with if I'm in bed a lot), and it can be done without needing a full shower (important if there are incisions that are healing and can't get wet).

Below are some before and after photos.  I added one from a few weeks later too (above), as the cut seems to evolve everyday.  I am really liking just putting gel on my hands, ruffling up my hair, and seeing what happens. This is one of the things I've done during step 1, which I'm thinking of as also being a preparation stage.

Valentine's Update

So far, I have made it through step 1 of the process, and step 2 will be happening between Wednesday, February 19th and Monday February 24th.  If the transplant team gets all the information they need, we would quickly get to step 3 (potentially as early as February 27th!). [If you're viewing this on a mobile device, please look at the background information page first to get info on the steps]

While this is scary in some ways, it is also really comforting.  While I don't talk about it often, I have spent 13 years feeling tired, not being able to do as much as I used to (or want to), and in the last year feeling less and less well.  While transplant has risks, it also holds the hope for more energy and a longer future. So while we have a lot of unknowns, we are feeling really hopeful about and good about this journey.

Since Valentines day is also a "heart" day, we thought it would be appropriate to launch the blog today.  Once we know more about the process and what is going to happen, we will update the blog. We probably won't post everyday, but I'm hoping to post something at least once a week.  I hope you all have a happy heart day, and thank you for supporting me and Peter through this journey.