Oops, it appears I’m on the post every 6 months plan. So much has happened since that last post.

Let’s see, the year started off really bumpy with GI issues of unknown origin for about 4 months. I’ll spare you the details, but GI has joined the party of specialists on my case, as symptoms resolved for about 6 weeks and then returned for another round. We don’t have final results yet, just theories. We did have some lab results concerning for a neuro-endocrine tumor which earned me a trip to see Hematology/Oncology and Pet Scan, but we got those results this weekend that no tumor was found.

On top of that, I had my first experience with gout, as the GI issues threw my electrolytes and body all out of whack. We looped in Rheumatology who started meds, but then we officially had to add on Nephrology, as my always cranky kidneys were really angry. And, angry kidneys make the transplant team nervous.

We really liked the nephrology doctor, who had taken time to read through my records beforehand. He was pretty honest, that dialysis and a kidney transplant will very likely be a part of my story, especially since the kidneys and heart work so much in tandem. He plans to follow me in clinic every 3 months, with consistent labs. His goal is to keep them as healthy as possible for as long as possible before we have to start more extreme measures.

From a heart perspective, my last biopsy got cancelled at the 2.5 year mark, so we think my next one will be around the 3 year mark in September. Can you believe it’s almost been 3 years?

Anyways, my biopsy last October, showed no rejection and I’m not displaying any symptoms, so we presume all is well. We’ve finally gotten my fluid status, my blood pressure and heart rate controlled with the right medications. Unfortunately, a lot of those meds cause insomnia, so sleep is still very elusive here.

We also have gotten my arthritis under control with medications, including prednisone. The goal is to wean off prednisone over the next 6 months. It still causes me to be very insulin resistant, so it keeps my endocrinologist and I in close contact. She was able to get a new insulin pump approved by insurance that has smart technology. It works by communicating with my continuous glucose monitor, and based upon my blood sugar, it either holds insulin or gives insulin to stay in the range we set. My Endocronologist and I are having much better success preventing highs and lows with the new system. It also allowed me to lose 40 pounds since January. Several more pounds of steroid-gained weight to go, but we celebrate victories over here.

From a mental standpoint, I would say things have improved as the year has gone on. We had so many bumps in the road to start 2023, after coming off of a rough 2022, that it took a little time to wade through all that.

I find myself in a place where I trust Gods heart, even when I can’t see his hand or his plan. Finding rest in that place again, has brought great emotional and spiritual healing. The Lord has whispered yet again to my heart, “Hope wins”.

Mom and I have masked up and ventured into thrift stores when there is no one else there. We’ve scored lots of bargains and enjoyed refreshing the decor around the house.

We’ve had some ER visits and lots of appts, but we’ve gone 6 months without a hospital admission. It’s been so nice to create each room as our own with our thrifting finds, since we are finally home to able to enjoy it! We’ve also had fun selling some of the old stuff around the house on marketplace, poshmark, eBay, etc. which funds our thrifting and we’ve even been able to use some of the funds to pay some medical bills.

Its still always something here, but we’ve actually been able to find peace within our four walls, find rest and have some fun these last 6 months. My team would like to see some more stability, but overall is pleased with progress and so are we. I feel like my head is always on a swivel, in contact with the pharmacy, doctors offices or at an appt. But we’ve found our groove in post-transplant life. I couldn’t do it without Mom, she’s still a rockstar. It’s a team effort and we get it done.

Please continue to pray for my continued health and for wisdom for my doctors. And keep my trusty sidekick and her intentions in your prayers. She’s the real MVP.

I’m promise I won’t go another 6 months without another post. 😎

Always thankful for my donor, #becauseofjesusandadonor, #Hopewins.