I’ve had a lot of questions in regard to my trip to Ohio awhile back so here is a quick update!

The high number of angioplasties I’ve had might be the reason for more damage within my chest and seems to be doing more harm than good so it is becoming a bigger challenge to go in and open the stents back up. My doctor is still willing to do the procedures but we are back to holding off as long as possible which is understandable…but also a very fine line of making sure I don’t wait too long. I had heard about this new clinic in Cleveland Ohio, specifically for Fibrosing Mediastinitis so for the first time since my diagnosis 22 years ago…I finally got to request a copy of my medical records for a second opinion.

While I absolutely love my medical team in Iowa City, I was kind of excited to go to a clinic that is studying my specific disease! I was asked to bring copies of my past scans so I called Iowa City and the tech confirmed that he could burn all of my tests on a “couple of cds”…he obviously didn’t know what he was getting himself in to and I couldn’t help but giggle when I received ALL of my past scans and procedures in the mail…over 30 cds!!!

Tim and I were excited to visit a new city, even if it would be a quick trip filled with doctor appointments and tests. We were able to knock Indiana Dunes National Park off my list…

and stayed in a short term rental right on Lake Erie our first night to make it more of an adventure!

The morning of my appointment, Leah sent me an encouraging message and we exchanged selfies showing that we were wearing our matching shirts to think of each other throughout my long day…

Initially there was some confusion with my appointment but everyone was amazing and worked schedules around so that I could see the doctors I needed to see and do the tests I needed to do all within the same day! I was also ordered to do a pet scan back in Iowa City because insurance would have to pre approve it.

It was a long and productive day and we enjoyed the views while we waited!

We walked out of that hospital 110% confident that Iowa City has been spot on with how they have been managing my illnesses all these years. They need to open their own clinic for Fibrosing Mediastinitis because several things Ohio mentioned, I had already discussed with Iowa City. Tim and I were able to enjoy the rest of our evening walking around the city before heading back home in the morning.

Once back home, the pet scan revealed that my disease was active, so according to Cleveland I instantly became a candidate for the rituximab infusions…a treatment known to help those newly diagnosed with my same disease! Tim and I did a lot of praying, researching and visiting with my Iowa City doctors. We also had a consultation with Ohio again and asked more questions! Tim and I were finally on board and kind of excited to try the infusions in hopes that it would slow down, if not shrink some of the active masses in my chest. At the same time, I felt overwhelmed knowing this could also cause more issues for my diabetes and congestive heart failure…was I possibly giving up old problems for new problems? So…I prayed more!

I began taking steroids which was the first step to start before the infusions and it’s been a rough go trying to manage by blood sugars…but we are managing them!

A few days later, Ohio called and explained that I had some really good questions at our last consultation so after further consideration we will continue with steroids but we are putting the infusions on hold for now. Due to the fact that I have had this disease for so long, they do not know if the active inflammation is because of my disease or if it is just my body’s response to all of the angioplasties I have had….but isn’t that what my disease is??

They plan to bring in more doctors to review my pet scan/past tests in hopes that I will be able to try the infusions in the near future.

Due to the holidays coming up, I am not going to push anything and will follow up next year! I am scheduled for another angioplasty in May but again, that might be up in the air until we figure out if I end up doing the infusions. Or perhaps we’ll do another pet scan when I am off the steroids in two months to see if they were able to calm down the active inflammation in my chest!

Sometimes I try really hard to figure out what the Lord is doing and I get frustrated telling family and friends once again that my options for treatment are still limited. So many highs and lows. But the love Jesus has for me always remains unchanged and just because my health is a never ending battle, doesn’t mean He loves me less. Whatever He is doing in our lives is for our good and His glory! And while I will continue to pray that He guides me to make the right decisions if it becomes an option again for me to try the infusions, I know that He will meet me on whatever path I choose! And what better time to be reminded of this during advent season! Thanks again for all of your love, support, encouragement and prayers!

Have a blessed Christmas and Happy New Year!

https://m.youtube.com/watch?v=uQVDjz214EE&pp=ygUVb2ggaG9seSBuaWdodCBseXJpY3Mg