6 Month Update

July 22, 2020

Hello everyone, it’s been a while. Several months, in fact. I have a few updates, so let’s dive right in.

From May 30 to June 6, Jill and I spent a week at a beach house in Emerald Isle, North Carolina. We both needed time out of the apartment and to shake up our routines (as every day is the same in quarantine). There were hardly any people around (it was still a bit early in the summer) and we were able to do take-out for meals, so we did not put ourselves in any risky situations. We spent our days walking, relaxing, and eating shrimp burgers at sunset on the top deck of our house. It was a much-needed trip for our mental health.

On June 8, I had a follow-up CT scan for my appendix. Jill and I drove up to Philly for the day (there was no traffic, due to COVID), just for the CT scan. I dropped her off at her parents’ house nearby (because she wasn’t allowed to join me at the hospital for safety reasons) and went to the hospital for the scan. As soon as I entered, a staff member checked my temperature. Once they verified that I didn’t have a fever, I checked in at the radiology department. There were several seats blocked off in the waiting room so that you had to sit at least 6 feet away from anyone else. I wasn’t in the waiting room long before I was taken back to the CT scan waiting room, where I was told to dress in a hospital gown.

I had been told in advance that I would need to drink contrast dye like I had before, and I assumed I would have to drink the disgusting plastic-tasting “milkshake” dye that made me nauseous. However, to my relief, I was given two big cups of water into which a bit of the dye was dissolved to drink. It still wasn’t pleasant, but it was much better than the “milkshake”. I had my IV for the contrast dye put in and was told to wait about an hour to drink the dye and to give it time to get into my system. About 20 minutes later, I was called back to do my CT scan, which took 5 minutes, then I was told I could go home. I was expecting to be there for at least a couple of hours, but I was at the hospital for a total of about 40 minutes. I drove back to Jill’s parents’ house where we had a nice (socially distanced) dinner with them, and then we drove home to await my results.

I got the results back three days later on June 11 via the hospital’s online portal, but the results were written in medical jargon. I reached out to my donor coordinator at the transplant department to try to translate it into plain English for me. She sent the results off to the colorectal surgeon’s office for their opinion on my appendix. She also told me that my kidney surgeon took a look at the results and said things looked good from a transplant-surgery-related standpoint. That was good news, so I just waited for the colorectal surgeon’s office to get back to me with their opinion on the results.

And I kept waiting and waiting and waiting. A couple of times, I reached out to my coordinator to ask if they heard anything, and each time her response was no, and she would send a follow up message to the colorectal surgeon’s office. On July 1, I finally called the colorectal surgeon’s office to ask about the delay, and they said things had been busy (understandably), but that they would take a look and get back to me soon. On July 8, almost a month after the results came back, I got a call from my donor coordinator saying that the colorectal surgeon’s office had reached out to her to tell me that everything looked good, and I wouldn’t need to have the appendix removed (but to still keep an eye on it). That was good news, of course, but it was annoying that it took a month to get it.

One week later on July 15 (and one week ago today), I had my 6-month post-surgery check-in with my donor coordinator. It was virtual, so it was limited in capacity. She asked me how I was feeling, how my recovery was going, stuff like that. My recovery has been going well. My recovery has plateaued and I no longer feel significantly better every day as I did before, but I’m still gradually feeling better. In an effort to be healthier, I've even lost about 25 pounds since my surgery (I lost some weight post-surgery because I wasn't eating, but gained it back once I left the hospital). I don’t have any constant pain, but if I sit in a weird position or if my cat sits on my stomach, for example, I have some pain around my belly button (where the kidney was taken out) and around where my appendix is. It’s minor, though. My donor coordinator said to treat it as a baseline and if it got worse, to let her know, but she’s not worried because my CT scan came back clear. She told me that for the first year after surgery, I’m still at an increased risk for a hernia, so while I can do more and more activity as time goes by, that risk is still there until the one year mark (January). But other than that, she said to keep being active and eating well, and that she would want to see me again in January for my 1-year anniversary check-in.

Other than all that, there’s not much to report, as not much has been happening due to the pandemic. I celebrated my 30th birthday on July 2, but that’s about all that’s happened. I do have some news to share about my kidney recipient, however.

Back in May, she was readmitted to the hospital because her creatinine (a chemical in blood that can be used to determine kidney function) level was high (which is not good). After many tests, the doctors couldn’t figure out what was wrong. Thankfully, her numbers started to trend in the right direction so she was allowed to go home. Her numbers and kidney function have improved over time, which is great news. She’s taken a bigger interest in being outside and doing activities, which her mom told me she didn’t really do before because she did not have the energy. She’s even been swimming a lot lately! Things are looking good for her, which is really awesome. Before COVID, we were thinking of meeting up at some point this summer, but that has been put on hold for the time being. I’m still in contact with her mom and occasionally she relays messages from her daughter to me and back. I have even received a few letters and drawings from her. For her 6 month “kidneyversary” last week, she went swimming and had a bunch of ice cream (she wasn’t allowed to have ice cream pre-surgery).

It makes me so happy that she’s doing well and becoming a normal kid again, and I can’t wait to meet her soon when it’s safe to do so!

That’s all for now. I’ll update again once I have any more news. Thanks for reading!

 

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