All the Appointments

It’s been a wild week.

We are currently sitting in the Seattle Airport waiting to board our puddle jumper to Redmond. I had six doctors appointments! 3 in Oregon and 3 in Austin.  (Sorry to the few of you I told 7, I accidentally counted a meeting on my calendar). Woo, a break! Ha. 

I think 6 doctor visits is still more than most people have in a year.  I know that you’re jealous!

The last time I went to Austin was in November; and with the surgery looming, I honestly thought that was going to be my last time there.  So this trip was definitely filled with intense gratitude… and quite a bit of anxiety.

Sorry to those of you we didn’t get to see.  It’s really hard to separate that anxiety from all these appointments with the joy of friend visits. Especially when all blood work and other signs point to an autoimmune flare, it’s hard to not let the fear creep in and keep you from fully immersing yourself in the moment.  It was still amazing how many people we fit into a few days; and that we saw all the folks we did. My heart is full!

Huge thanks to everyone that went out of their routines to see us.💞

So here’s the skinny.

Tuesday, in Oregon, were the ent,  pulmonologist and osteoporosis appointments. 

• ENT- the ct scan showed I might have a recurrence of a cholestiotoma in my left ear.  This would require surgery as they can cause damage to my already failing ears, but he needs an mri to be sure. That will not be my first priority,  but it’s on the list.

• Pulmonologist- he’s being very honest and upfront that he really doesn’t know what is causing my cough.  It doesn’t seem like asthma,  he already treated me with prednisone and antibiotics, which didn’t work.  My lungs sound totally clear, and x-ray showed that the pleural effusion is still gone. He didn’t want to give me other medications when he’s so uncertain (which I appreciate). He needs a ct scan of my chest with contrast to make any other determinations.

• Osteoporosis- still making incremental increases in strength and getting closer to where I was before the surgery! Also,  a guy that works there who is up on all the new research had previously talked to me about this supplement he was taking that improved inflammation and lowered his cholesterol 20 points.  I figured it was worth a shot, so I ordered enough for jeremy and i, and we started taking it daily a week and a half ago.

• Austin appointments

• Echocardiogram – this is a long test that is basically an ultrasound of my heart. Our flight arrived in Austin at 1:30 and my appointment for that was at 3:30 so after a 4am pickup and a lot of manifesting of an ‘on time’ set of flights,  we made it!

• Rheumatologist- this was a big source of concern.  After many questions and some examination,  she basically wasn’t sure if it was the autoimmune.  Some of my blood work was concerning,  but a big marker,  the eosynophils, were very low. She did more blood work while i was there and also needs a ct scan with contrast of the chest to be sure.

• Cardiologist- if any of you remember Dr. Bhatt from the heart surgery days,  you know he’s one of our favorite humans in general and that he is a big part of the reason that I keep doctors in Austin.  He saw me at my absolute worst in 2013 and had been beside me (and jeremy) every step of the way. I was so excited to see him but a little nervous that i something looked worse with my heart. There would be a need for a third sternotomy. 🥴 Alas, he said that everything with my valves, as gathered from the echo and his examination,  looks stable for me! I will always have ‘mild to moderate’ leakage in my valves,  but as long as it stays mild to moderate,  I don’t need to change anything.  He doesn’t think the cough is heart related either, but he has a couple of things to try.  Another positive thing he mentioned is that they are making fast strides in helping issues like mine and so hopefully by the time I do need some valve intervention, they may have a way to do it through a catheter. So fingers crossed for that. <Two sternotomies is enough for this lady!> Alas he asked about our families, even  remembering where they were located and our life in Oregon (we invited him and his family to visit!) He also told his medical assistant that I’m a fiesty one and that he should feel lucky to know me. 💙

The US Healthcare system is a giant shit show,  but every once in a while you meet someone that makes the best of it gives you their full attention,  asks real questions about your life, and all-in-all makes the whole journey worth the trouble. My pulmonologist,  while still new to me, is like this as well.  I will always have a huge place in my heart for those who go above and beyond. It makes all the difference in the world when someone takes the time to be nice.

After the last appointment,  I just broke down in the waiting room of the heart hospital.  No more holding it in, trying to arrange schedules and dart all over the city.  In Jeremy’s arms,  I just gave myself a bit to let it all go and know that, for now, our journey together will continue.  I could finally just try to relax and enjoy our people without having to hold in all the fear of bad news.  Granted,  it’s easier said than done, but it’s all a practice. 

Results,  thus far:

• So the fun of the ct scan is that I can’t get it till May because of the radioactive iodine.  They need the contrast and there is a 3 month waiting period for that.  So now, I wait again.   Amusingly,  the surgeon needs this test, too,  so I get a 3-for-1!

• Blood work- this is the most interesting part! The same blood work that was all over the place two months and two weeks ago now looked completely normal! I certainly didn’t change anything except that crazy supplement I started taking! Coincidence? Maybe. But I’m gonna keep taking it and hope it gets me over this rough patch!

To add to the fun,  our puppy spent the whole full day we were traveling, throwing up! I called the vet, and she  said it was probably anxiety from us being gone! Unconvinced that she liked us that much already,  I was able to utilize modern conveniences and door dash some chicken and rice to the dog sitter, and it did the trick! She does love us already!

We are excited to get home to her, our stuff, a lot less traffic,  and nature. For now, I’m going to be grateful that things are looking stable and just give the cough some more time.  The body aches are starting to learn as well,  so maybe that supplement is helping out my body is just getting is groove back.  I hope to continue to for in relaxing and being open amidst diving in to job applying. As much as I don’t want to,  it’s time.

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