After a long day of chasing dead ends, Allen was finally able to book us a repatriation flight to the US of A for July 24th. Thankfully, spouses of American citizens are allowed! He got the very last fully-reclining seat on the plane for me which is exactly what I needed. This is my first time traveling business class and might be my last, so best enjoy it! Aetna, the insurance company, wrote us an e-mail right after he booked to tell us that they are unwilling to help us out on this venture, so we are extremely thankful we found another option. I must admit that this progress has me extremely excited and nervous all at the same time. You can pray I'll get well enough to sit up during transitions and for our 15-hour trip to Lima (we'll have to drive since the airport in Arequipa is still closed). This afternoon, Allen ingeniously came up with a travel arrangement for me!
Good news! Mary Beth was feeling so much better today that she sat and ate the first half of her dinner before going to the couch to finish her runza (if you aren't from Nebraska, a runza is bread dough filled with cabbage, spices and hamburger (or bacon!) and baked in the oven). This is the first time she's felt good enough to sit at the table for a couple of weeks.
The insurance company called to say that they talked to the surgeon in the States and will have a meeting tonight to discuss how to get her there. It was pretty non-committal. My first impulse is to write that I'm not expecting much to happen because the Arequipa airport is closed, but I'll ask you to pray for a miracle flight instead!
I find it interesting which things have become scarce in Peru. Like everywhere, toilet paper flew off the shelve at the start of the pandemic. There are actually studies to explain why that happens! Thankfully, TP has reappeared in Peruvian stores with no more limits on buying it. But other things that you might not expect to be scarce have also become hard to find. I asked at about 10 stores over the last week if anyone had mustard or ketchup and finally found both today. (I got my share of 'Mustard?! Seriously? NO! Nor do we have any European white truffles!' looks from store owners) Borrowing a Cuban tactic used to give the impression that stores are full of goods, the local supermarkets fill all the space that varieties of ketchup and mustard used to fill with what they have on hand. In this case, Mayonnaise!
We spoke with the thoracic surgeon at Mayo today after a week of anticipation. She said that Mary Beth absolutely needs to have the surgery but at the moment we can't schedule a surgery because of the COVID pandemic. So pray that it will be possible earlier rather than later.
This afternoon, we had an appointment for a phone call with Meagan, the nurse for the thoracic surgeon at Mayo. Everytime Meagan called, we could hear her but she couldn't hear us. Finally I ended up calling the Mayo switchboard and got transferred to Meagan's department and we could hear each other! She went over all of the risks of the surgery, pain control, pre-op, surgery and post-op timeline, and recovery time. She said that normally there was a 4-5 month waiting list to get the operation! But with the COVID pandemic she wasn't sure what we can expect. We should know more tomorrow.
And now for something completely different:
Our oven of 20 years quit two days before the lockdown started. Since I have replaced several parts on it over the years and it still leaked a bit of gas at times, we decided it was finally time to get a new one. We are so glad it was then, as we have had to cook all of our meals at home since March 16th. Our old oven has been sitting in our back yard since then since we can't take it to the junk yard.
Before lunch, I was riding my bike to the outdoor vegetable market and saw a pickup with a bunch of junk in the back, including an oven! "Hey!" I yelled, but the driver didn't hear me, so I turned around and chased him until he slowed down for a speed bump. "You want to buy an old oven?" "Let's see it!" "Follow me!"
He followed me to our house, loaded up the oven and even paid me $3 for it! If only Mary Beth could sit at the dinner table and look out over the back yard and see that it is gone!
A doctor in Tacna (four hours away) that I've been corresponding with by email, called me today. As far as I can tell, he is the only doctor in Peru that does this surgery on adults. He learned the procedure in Spain. He does 3 to 5 cases a year on adults and seems very careful, competent and was nice to talk to on the phone. So there's another option if things with Mayo don't work out.
Not much to report. Thankfully, Mary Beth is feeling better today. She's not so dizzy and not so achy. Only her head ached today.
So what does she do all day? Since she can only be upright for about 30 seconds at a time before her blood pressure bottoms out, she mostly lies down. She moves from the bed to the couch (where she eats all of her meals) and even to a camping mat on the floor in the living room throughout the day. She listens to sermons online and talks to her parents and siblings on the phone. She reads about her condition online and watches YouTube videos about the surgery. And she's counting down the days until her video appointment with the surgeon! Pray our internet and electricity don't go out on Friday!
Happy Independence Day to our American friends!
Mary Beth says she is feeling much better today. Her body aches and head ache are better. We've worked on more exercises (moving her arms and legs every 15 minutes while lying down), different positioning of her neck (no pillow) and massages. She feels about the same wobbly-wise when she gets up.
The insurance company called to say they had found a doctor that does the surgery Mary Beth need in Lima. "Let's see, his name is, Victor..." "Gomez?" I said, helping her find his last name. "Yes! Gomez!" "Yes. I've talked to him. He only does this surgery on kids up to 17 years old." "Oh."
So for now, we are just waiting for our video appointment with Dr. Jaroszewski at the Mayo Clinic on Friday, July 10th to decide what to do. Pray that she has operating room openings soon after our initial visit with her.
Mayo sent us all of the paperwork to fill out today, which Mary Beth did dutifully despite not feeling particularly good today. She feels more wobbly today when she stands up and she's having some tingling in her hands. It seems that changing the position of her head is helping the tingling. She only stands up to go to the bathroom or to move from the bed to the couch, otherwise she has to lie down.
Just got back from Mary Beth's echocardiogram. We had hoped to measure how well her heart is pumping while lying down and compare it to when she is standing up when she gets tachycardic and her blood pressure drops to nearly nothing. On the way there I was praying that God would provide a parking spot in front of the clinic, as Mary Beth can't walk very far. There was the most traffic that I've seen since March when the quarantine began. Not a good sign for those wanting a parking spot. Just when we arrived at the clinic, a car parked in front pulled away leaving a spot at the door. God really does take care of the little details too! I sent the cardiologist a message that Mary Beth can't walk or be upright for very long, so to let me know when he was ready for her and I'd bring her in. When he was ready, we walked in, but while waiting for the elevator, Mary Beth nearly passed out, so we had to get a wheelchair.
The cardiologist tried to do the echocardiogram, but because of Mary Beth's pectus excavatum he couldn't see all four heart chambers at once to calculate her ejection fraction or stroke volume. He thought the myocardium looked healthy but it doesn't have any space to work. He said it was displaced to the right side quite a bit. He kind of had an amazed, "How have you lived 37 years like this?!" look on his face. He said we could get a cardiac MRI to calculate her ejection fraction, but we really have enough information at this point.
Perhaps the most amazing part of all was when I asked him, "How much do I owe you?" He replied, "Nothing. I couldn't do the study."
Speaking of money, I turned in my insurance claim for the month of June. It included a CT scan, a Holter monitor, lab work, medicines, specialist consults and COVID tests. Total: $367.72. Yes, doctor friends in the USA (Dr. Porter and Dr. Schmidt) didn't charge me for internet consults, but it still seems pretty cheap compared to the USA.
Great news! Dr. Jaroszewski at Mayo has agreed to take on Mary Beth's case. She will have an appointment via internet on July 10th! That's only a week and a day, so we are very thankful!