Long Road

I have not posted an update in quite a while. Partially, it was because of my depression and anxiety coming back in full force, some burnout from trying to get my Masters online, and then making up a ton of care I missed thanks to COVID.

Things got so bad in May that I needed to attend a day program for my anxiety and depression. It was beneficial. But until this week, I had difficulty finding people skilled to help me keep up with what I had learned. I luckily found a group near me that works out well. I went to my first session last night, and it was a great review. I appreciate this, too, because, in May, it was hard to know how much I was remembering or absorbing while adjusting to new medicines.

I decided to speak about this because I think that in chronic illness, burnout from healthcare in a post-COVID world is not talked about enough. Also, constant physical symptoms may leave some of us dragging behind our mental health or waiting until things “die down” before we deal with the mental aspects of what is transpiring. But they have to take equal weight and precedence.

I also have found that Dialysis is helping me significantly (I started after one of my kidney tumors bled in June). I’m still adjusting and have had a few complications, but overall, physically, I feel way better than when I was struggling with fluid issues for the past year and a half. The people at my dialysis center are kind and helpful. Especially the dietician because things can be very confusing regarding restrictions and what foods are allowed or need to be avoided.

I decided to restart this blog because, at some point in the near future, I’ll do my kidney transplant evaluation. I still have a lot of care I’m making up first so I don’t have a date yet. Because of my schedule, my mental health team told me they don’t want me to have more than 3 or 4 monthly visits with dialysis. (Before May, there were about three months I was in a doctor’s office 5 days out of the week.) I finally have a case manager who checks in on me to be sure I’m taking my meds, can get them, and can make sure I have support if needed. It has been helpful. I wish this would have been an option sooner, and maybe much of my burnout could have been avoided.

The other question was do I feel ready to list for another organ? Just before COVID I had thought about going to an info session but it didn’t feel right. It felt much too soon. Then COVID threw a wrench into it all and especially in the early months I went only for emergency care, nothing preventive until my doctors knew it was safe.

I had all vaccines, the Evusheld injections, and any suggestion that might prevent me from obtaining the virus. I saw some family members get deathly ill from it, even when they had protected themselves, friends get sick and die from it and the complications. Coupled with that, I was in an area that had a good many people who were anti-mask and anti-vax, which made me isolate myself more.

As a lung recipient, even when I was on oxygen before my transplant, I wore masks to doctors’ offices and still do because I feel that it protects me from whatever is in the air – wildfire smoke, allergies, and some viruses. Even in the hospital, I wear it when I leave my room because I don’t know what’s in the hall.

Despite vaccines, I did wind up with viral pneumonia in March, and I think that’s when my kidneys really started feeling the stress. After that point, I had fluid issues (even before my bleed) – either having too much or too little. So I spent long stretches in the hospital with them, tweaking medicines, going back and forth on diets that might help, and contemplating dialysis.

On top of this, I did make it through half of my Master’s program online. But when I tried to ask for extra accommodations for hospital stays, the program’s policy of making up work stressed me out. I could either withdraw and retake the class or agree to an incomplete to have some time to complete all the work. The problem with that was if I forgot or failed to turn in ANY assignment within the timeframe set, that incomplete would be turned into an automatic F, and I would be out of the program entirely. After twice trying to make up ONE class getting more than halfway through, and having to withdraw each time, I decided to take an indefinite leave. So, if and when I want to return, I could. Or I could transfer to another school later with at least most of my credits still intact.

Once I started dialysis, I couldn’t foresee having enough time to meet the fieldwork hours without making my health worse in the process, as I’d need somewhere between 16-24 hours per week minimum for my specialist placement. Right now, I do dialysis for 4 hours 3 days a week, including once on the weekends.

So, I made the dialysis a priority for now until I’m fully adjusted, and the rest will come with time.

I’ve been trying to limit my posts on social media because I find if I spend too much time there it also has an adverse effect on my mental health.

I still have a lot of work to do, but I’m doing my best to take it day by day. Appointment by appointment and not think too far ahead.

But since there’s basically hardly any reliable info for transplant recipients or rare disease people about dialysis when you start outside your center, I thought it might be worth posting things I find that have been vetted and credible if I come across it. Some hospitals and centers are good at disseminating info, yet others are not. So this leads to a lot of confusion.

I plan on sharing some of these resources in the future to hopefully help someone else in a similar situation spark a convo with their center’s staff or their doctors.