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.