New Year

2026 is here! We enjoyed time with family on New Year's Eve and New Year's Day. Hubby had time off and my favorite child was home from college - it was nice to be together.

I started the New Year off with 5 medical appointments, my antibiotic infusion and cardiac rehab all in one week. I am not sure how my schedule ended up with everything back-to-back. But I am usually the one who single handedly racks up the deductible and out of pocket max for our health insurance in just a few appointments.

My first appointment of the new year was with a cardiac surgeon at a teaching hospital in the city. As you may remember, I currently am living with an active infection on my aortic graft. In order to clear the infection, I would need surgery to clean it out - and my cardio thoracic surgery team deemed the infection to be inoperable. My vascular surgeon (who coil embolized my pseudo aneurysm) has been encouraging me to get a second opinion at a different hospital. We are fortunate to live by a major city that has multiple well known teaching hospitals. I had to be screened by a nurse over the phone, and they requested to see all my imaging studies as well as my medical records. This surgeon offered the possibility of surgery to remove the infection - in fact he would remove and replace my aortic valve and aortic graft. Instead of using a Dacron graft, he would likely use a donor aorta. He is taking my case to an interdisciplinary team to be further evaluated. He went over all the risks, what recovery would look like, and gave us lots to think about. We are carefully considering both options: 1) IV antibiotic infusions every 10 days for "life" (however long that may be) or 2) a risky, complicated surgery to remove the infection on my aortic graft. We should be hearing back from this surgeon soon to see if the surgery is a real possibility and how we want to proceed.

With that news and potential decision weighing heavily on my mind I also saw my PCP, Cardiology, Infectious Disease and Rheumatology. I was able to talk through the surgical option with each of these specialties. They all asked good questions and provided even more for us to consider and think about. I have been having trouble sleeping (even before the surgical second opinion) and my PCP and I are working through some options. I am stable enough to finally be up to date on my vaccinations - flu, COVID and Shingles vaccines have all been jabbed into my arm. I had shingles last January and never want to experience that again if I can help it! I get bloodwork every 10 days with my infusion, so I feel highly monitored.

My IV antibiotic infusions are going okay. I had a minor reaction to my infusion at the end of December, so I now receive IV Benadryl before they start my infusion. The major side effect is tiredness, so I am no longer able to drive myself to my infusion. This adds an additional layer of scheduling and inconvenience, as well as a little bit of my independence being lost. My last infusion was through an IV in my hand. My hand is very bruised and my vein all the way up my forearm is inflamed. This is annoying, painful and discouraging. I am also wiped out for a day or two after each infusion. The ten days between infusions flies by, and then we start the cycle all over again.

My left hip is bothering me - not sure if it is a result of the increased activity from cardiac rehab or if there is something brewing. So, I will have an MRI of my spine next week. My left hip is where the infection/abscess was that started this whole cascade of medical complications.

With all of this comes lots of emotions, and plenty of big feelings. Could I get rid of the infection? What if the infection spreads? Am I mentally strong enough for another major surgery? How will either of the decisions effect my family? How long can I live with an infection on my aortic graft - weeks, months, years? Am I a burden? What complications could arise from extended antibiotic treatment? What complications could arise from another major surgery? Am I "too much"/"alot" so it is hard to be friends with me? Will I ever feel normal?

The weather is cold and snowy - and I spend most of my time tucked inside our cozy home. However, hubby and I did manage to sneak away for a few days to Southern California. Southern California is sunny, warm and beautiful. It is also home to DISNEYLAND! Mickey Mouse and I were finally reunited. (We had to cancel a Disney Cruise in September). We stayed at the Disneyland Hotel and walked through Downtown Disney to the Disneyland Park and Disney California Adventure over three days. Maverick the motorized wheelchair accompanied us as well. I rode Space Mountain (twice) and Big Thunder Mountain Railroad - which probably wasn't the smartest idea, but it was sure FUN. We came back home to cold and snow. In fact, today the temperature is -5 degrees Fahrenheit as I write this. The sun, warmth, fun and magic were just what my heart and soul needed.

Because I love Disney so much, I am going again in March. This trip will be with my BFF to Disney World in Florida. My BFF has never been to Disney. I am busy planning, making reservations, making matching t-shirts, etc, etc. It is good for my heart to have something to plan and something that I can look forward to.

We also just ordered our son's cap and gown for graduation. He will graduate with a double major on May 3rd. He is exploring options for post graduate study and job opportunities. Such an exciting time for him. We are so proud and excited to see what his future holds.

“May your choices reflect your hopes, not your fears.” - Nelson Mandela

“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.” – Romans 15:13

Amazon wishlist: https://www.amazon.com/hz/wishlist/ls/6X3I4IWXR8ID?ref_=wl_share