Catch-22

 Hello! It's been a hot minute since I've posted an update for you all. The truth is, it's been hard to find the positive lately. It's been a tough few months, but I'm happy to report there is some positive news. 

We can start with the crappy news, so we can end on a positive note. 

As you know, I've been dealing with all kinds of side effects from the kidney disease and dialysis. There's the calciphylaxis that created discoloration and sores around my ankles - luckily, with medication treatment during dialysis, the sores have healed, but unfortunately, I still have discoloration. I will follow up with the dermatologist soon. Next, my optic nerves had been swollen, and they did a spinal tap to measure the pressure of everything. It was extremely unpleasant, and it told us what we already knew: that the pressure was high. There were some adjustments made to my blood pressure medication, and it's brought down the pressure a little, which is good. There is a medication that could help bring down the pressure; however, the medication actually damages the kidneys, and the side effects would adversely affect me. The plan is to stick with the blood pressure meds and hope things continue to improve. 

The most recent issue is with my heart. I got diagnosed with pulmonary hypertension, which has put extra strain on my heart. I have a leaky valve, and the pressure in my right ventricle is too high for a transplant surgery. It measured 90 in July; however, earlier this month it was down to 67. The surgery cutoff is 50, so I'm hoping that with more exercise and a steady diet, it will continue to come down. For now, I'm scheduled for a right-left catheterization in January so they can have a closer look at the heart valves and arteries to ensure there are no blockages. Depending on how that goes, they may need to do surgery, which is fucking scary. Many of the doctors and specialists have told me that many of the issues could resolve themselves through a transplant...But I can't get the transplant until some of these issues are resolved. Hence, the catch-22 title. 

Annnd to top it all off, I have a small hernia in my gut area. We think it may have been jolted from one of the many coughing spells I've dealt with. I'm scheduled for an ultrasound and a meeting with a surgeon. With all the appointments, labs, and bills,  I've had to tap into some of the GoFundMe donations sooner than anticipated, which sucks. 

As you can see, it's been a bit fuckin ROUGH. Despite these bumps in the road and setbacks, I'm doing my best to keep the faith. I've made an effort to return to church on Sundays, and it helps me refill my cup of faith. I see a therapist every other week, and things can be lighthearted, and in other sessions, I find myself deep in my feels. I leave the sessions feeling a little lighter, and plan to continue working on myself. My friends check in on me, and I'm grateful. I have friends who bring me food, and it's just so generous that they care that much. I've gone to a few Suns games and concerts - events that help take my mind off things. My uncles and cousins came over last weekend and helped clean up my yard of weeds that had accumulated from some storms. I had tried to clear it myself, but physically it was hard on me. I have incredible coworkers who ensure I'm taking care of myself, and the amazing HLI Familia alumni frequently check in on me. I'm forever grateful for this amazing support network I have! 

Now, I promised ya'll some positive news. I'm happy (and extremely blessed) to report that I have a living donor match! My friend went through all the testing (and re-testing), and after some time, he was notified that he was cleared by the committee. It was an incredible update, and selfishly, I kept it to myself for a while. I didn't want to jinx anything. But in the midst of some of the medical setbacks, I wanted to share so we can focus on this blessing, rather than the shitty stuff. I have not been cleared due to the cardiology issues, but I've got appointments set up to work on things, and I'm praying that I can get cleared in the next few months. As annoying and frustrating as it's been to deal with these other issues, it's not above me to know that many other kidney disease patients wait years and years for news like this. I'm so incredibly blessed to have friends and family willing to donate a whole organ to save my life. If the roles were reversed, I know I'd be happy to get tested and donate as well. Let's hope that the good news and good vibes continue into the new year. 

Please continue to share my story, and it would help immensely if you could share my GoFundMe link. No pressure to donate yourself, but a share goes a long way. If you choose to donate, be sure to slide the "tip/fee" scale to zero so they don't take a percentage from the donation. I also have Zelle and Venmo, so feel free to reach out to me directly. I cannot thank you all enough for the support. I can't put into words how you all have saved me throughout this year. Thank you, thank you, thank you. I'll be sure to get back on here to share updates in the new year. Thank you again for following along.