Wow. It’s been quite a while.
I initially started this blog because I searched for similar places before I started dialysis. I wanted to read experiences of other people going through the same thing to try and mentally prepare for the journey ahead. After starting dialysis, I quickly lost the drive and motivation I initially had to document my experiences. I often feel like I just go through the motions of living these days instead of actually living and that in itself can be overwhelming. I see the people around me and their lives haven’t stopped and it makes me feel left out and a little disconnected. I dealt with so many financial struggles this year due to being out of work, along with not having a working car for most of the time, which made me feel a lot worse about myself than I should have. It was a terrible cycle of me feeling bad for not making the same strides forward as everyone else and feeling bad for not doing more. They say that “comparison is the thief of joy,” and when it comes to being chronically ill, that couldn’t be more true. My mind has a hard time accepting the limitations of my disease and I’m trying to not be so hard on myself when I can’t or am not doing the things that I really want to do. I decided I am going to try to write more, but I’m not going to put too much pressure on myself to do it.
With that said, a lot has happened in this past year, so I’ll do my best to recap.
I haven’t discussed this much here or on social media, but I do have a match for a kidney donor. My donor is an incredible person and started altruistically testing to be my match last November. After a couple months of extensive testing for both of us, we found out she is indeed a match! I feel very blessed that someone would do something like this for me and truly cannot put into words how much I appreciate everything she has done. At the time, I was out on temporary disability from my job and was on my employer health insurance because of that (I also had to pick up Medicare in order to be listed for transplant). My employer was holding my job for up to 6 months and was continuing to pay for my insurance during that time. We initially had a transplant date scheduled for March 19th, 2018. That was almost exactly the 6 month mark for me being out of work, so I asked the transplant team what would happen if my employer couldn’t extend my insurance. I explained I hadn’t spoken to them yet about it and it most likely wouldn’t be an issue (I worked for a small, flexible non-profit company and they ended up agreeing to extend my insurance once I spoke to them since the plan was I’d have the surgery and go back to work once healed). Because I said this, the coordinator I spoke to misinterpreted what I said and assumed I had no insurance, so she cancelled my surgery and took me off of the list. In the meantime, the transplant team requested I call my employer to confirm the insurance would be extended. I did so and contacted the transplant team to let them know it was, but they then decided they wanted written documentation of that from my employer. My employer sent this, but the transplant team didn’t like the wording, so they contacted my employer themselves by phone to discuss the matter further. After the clarification, the transplant team requested another written document from my employer confirming I would still be on their insurance. These exchanges took about 3 weeks and pushed back the transplant date further. Because of this, my donor wasn’t able to donate at that time anymore because of plans she had already made for the summer with her family, so we agreed to hold off on the transplant until after July. For the record, I am very unhappy with the way the team handled this entire situation (and many other things that I don’t feel like getting into, like the living donor coordinator trying to convince my donor to donate altruistically to someone else) and fully blame them for the fact that I didn’t have the surgery in March.
Since the surgery was postponed and I was no longer going to be going back to my employer in the next few months, they were no longer able to continue extending my insurance because quite frankly neither of us knew when or if I’d ever be going back to work. So essentially all of the frustrations we had just dealt with when it came to my employer insurance was for nothing. At this point, I was still on Medicare, but I couldn’t be listed for transplant with just Medicare so the transplant team took me off of the transplant list. I tried applying for Medicaid but apparently get too much from SSDI to qualify, so my boyfriend had to buy a secondary private insurance plan for me since I can’t actually afford to do so myself. I finally had all of my insurance things straightened out by the summer and felt hopeful about things finally moving forward again.
That’s when I found out that I had a cyst in my uterus that I needed to have removed before I could have the transplant. I had been having irregular bleeding off and on and went to my primary care for an exam. She requested an ultrasound and they saw the cyst, but it was quite large at 9cm. She referred me to a gyno specialist for further evaluation, where I had a trans-vaginal ultrasound, and she advised that they weren’t quite sure what the cyst was and it needed to be removed. She did mention some possible damage to my left ovary as well and mentioned they may need to take it, but they wouldn’t really know until they did the surgery. The surgery was potentially going to be done laparoscopically, but if they opened me up and saw the cyst was too large to remove that way, they would have to make an incision and remove it that way. They ended up having to do the surgery with an incision and took the cyst (which was 10cm by now), along with both of my ovaries. They had warned me that this was the worst-case scenario situation before-hand so I was a little prepared mentally, but waking up and finding out both of my ovaries were removed was upsetting. I’m not someone who was even sure if I wanted kids, but not actually being able to make that decision for yourself kind of sucks. I was put on hormones so I don’t go into menopause that I’ll have to take until my body would normally go into menopause. The surgeon advised the cyst they removed was actually something called a borderline tumor and that they needed to send it out for testing to see if it was cancerous. It took over a month to get the results, as they had to send the sample out for a second opinion and they had thought an area looked suspicious. I got the clearance that it wasn’t cancer and was told I could start thinking about moving forward with transplant again.
This brings us to last month. The transplant team reviewed everything with my surgeon and they agreed we could move forward. My donor started a new job during the summer, so at this point, we are at a standstill trying to figure out her time off and how that will work when it comes to the surgery and recovery. We’re approaching the year mark for our testing, so there is a possibility we will have to re-do all of the testing again before we can move forward with the surgery. This journey for me so far has sort of been nothing but road blocks, but I’m hopeful things will work themselves out and we can move forward with everything soon enough.
I’ve only been on dialysis for a little over a year, but it feels like it’s been a lifetime. I truly struggle mentally on dialysis days knowing how much I don’t want to go to dialysis and sit in a chair hooked up to a machine for 3 hours, but have to go anyway because my life literally depends on it. I’m sick and tired of dealing with my dietary restrictions and the frustrations that come with them, like swelling if I drink too much fluid. I’m sick of the nausea I get for no reason that either gives me no appetite or causes me to throw up whatever I eat. It’s so hard to focus on the positives all of the time when there’s just so much negative, but I really make an effort to focus my energy on that. In this past year, I’ve learned so much about not only myself, but the world and relationships around me. I feel closer to certain people that were already in my life, but I’ve also been able to grow new friendships during this time as well. I am truly grateful for all of the people in my life and I’m especially grateful to be with a partner right now who helps me find the joy in life despite everything.
In the meantime, I’m just trying to focus on enjoying the now and finding ways to feel like I am actually living and not just going through the motions. Traveling, eating foods I love (in moderation), self-care, reading, spending more time with the people I love… I realized that we never know how long we have on this Earth, so there is no point in me wallowing this time away while I’m waiting for transplant. My life didn’t end, it’s just different now and I am still trying to get used to this new normal.