Time for an update and basically the same thing — my stents narrow, I have angioplasty to open them back up and then we keep moving forward until the next appointment. Leah accompanied me to my pulmonary and cardiology appointments a couple of months ago because she knows it leads to lunch…

For the most part, everything looked okay but we will continue to monitor some areas of progression.

My most recent procedure to open my SVC stents, however, was a much more difficult experience. For the first time in all the years I’ve been going to Iowa City, I was sad to discover there was not a single familiar face involved in my procedure or anywhere to be found, which made an already challenging situation even harder. Doctors attempted access through both my groin and my jugular vein (the first time they’ve tried the jugular approach).

Unfortunately, they were not able to open the right sided stents, which we knew might eventually happen because of the complicated location of the blockage. The good news is they were able to open the left sided stents, which had narrowed 70%. Since the left side is currently the only side keeping blood flowing, we need to make sure those stents stay open so I already have a follow-up angioplasty scheduled with my regular doctor in January. While I’m not looking forward to another procedure so soon, I do appreciate that they’re making it a priority to get me back on my doctor’s schedule again. I’m even more thankful that my body continues to develop collateral veins and I never take that blessing for granted. The Lord has made my body fight hard for me over the years, and I’m grateful for every little victory. 💕

I often wonder if I should even write updates when everything seems so repetitive but then the Lord always puts someone new in my path when I am questioning myself. Someone newly diagnosed or whose loved one has fibrosing mediastinitis and found my blog while searching for answers will reach out to me. Those messages remind me why I need to keep sharing from time to time.

I’ve lived with this illness for over 20 years and have significant damage so I haven’t been a candidate yet for many of the newer treatments that are becoming available. But, I’m still here, I’m still fighting and I’m still available for anyone who needs to talk. I’m always encouraged when I hear stories of people finding treatments that help improve their quality of life so while I may not have personal experience with every option, I can help point people toward questions to ask and possibilities to explore. Sometimes having someone who relates and can simply say, “I’ve been there,” makes all the difference.

As far as life outside of the appointments, things have been crazy busy as usual with Tim and the kids. Tim is crushing some of his goals this year so I had the privilege of being his date for one of his work dinners!

Leah got her driver’s license and has stayed busy with dance and friends while Asher has spent much of his summer helping dad on the farm and hanging out with his friends as well. Both of them ran their first 5k with grandpa…

While grandma took pictures!

They’ve also been involved with our rentals and Tim’s real estate!

And while checking on one of our properties down south, we were finally able to take a break from work and have some fun…I watched from the boat🤣

Probably the most exciting news since my last post though is that we welcomed our first granddaughter back in April! For those of you who have followed my story from the very beginning, my “aprilskye” (Skyler) is now a mommy!! 💕

We’ve been able to visit a couple of times and every time we leave, it’s so hard because there is something incredibly special about watching your child become a parent. It’s a whole new kind of joy and it definitely makes me wish we lived just a little bit closer!

So that’s about it!! I’m so thankful for all of you who continue to reach out to check on me, pray for me and introduce yourselves. It’s bittersweet meeting so many amazing people because of such difficult circumstances, but I’m so grateful for each connection along the way. I’ll plan to update again after my angioplasty in January but until then, even if I don’t blog as often, my email and Messenger are always open!

Keep fighting the fight and always find something to smile about. 💕