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.
3:22 pm
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.
1:19 pm
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."
3:16 pm
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.
5:21 pm
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!
2:19 pm
Haven't heard from Mayo yet, but they are still eating lunch in their time zone and are known for being a well-run organization, so I'm confident we'll still hear from them later today. I just talked to the cardiologist here and arranged for Mary Beth to get an echocardiogram tomorrow at noon. Pray that it clears the picture instead of muddying it!
Mary Beth is feeling weaker than yesterday. For the medical people, her orthostatic blood pressures may interest you: Supine she is 110/75 but standing her BP is unreadable. Her heart rate goes from 75 lying down to 115 standing up. This is about what she has been running since I started checking two weeks ago.
3:09 pm
Mayo emailed to say that Mary Beth's CT scans didn't upload to their system and asked me to try again. Moments after I uploaded them again, they wrote back to say that they got them and they will look them over and get back to us.
This morning we went to the lab to get tested for COVID. Mary Beth lay down in the back seat of the SUV and did pretty well traveling. It was pretty scary being in a crowded room full of people getting tested for COVID. I mean, they have a reason to be there, right? Like they think they might have COVID? Thankfully, the lab tech came out and poked Mary Beth's finger in the SUV. Two hours later we got the results, which were the expected 'Non-reactive'. Since there are so many false positives, it wasn't a sure thing. She's actually feeling better today. She isn't feeling so completely wiped out after simple things like going to the bathroom or sitting up to eat. "I can stand for 30 seconds before getting wobbly. Yesterday I felt wobbly immediately after I stood up."
4:14 pm
I'm trying to find out if the surgeons that the insurance company is trying to line us up with actually do this surgery in adults. They've not been very transparent, and haven't answered the questions, "How many cases do you do per year in adults?" "Do you have the necesary materials to do the surgery?" Hopefully, we'll be able to get answers to these questions soon. I was told that the chief surgeon will get in contact with me to answer my questions.
5:33 pm
The medical director did call me, but he wouldn't answer my questions, but instead requested that we get another CT scan that shows she doesn't have COVID despite the negative tests we've done. I think they are terrified to bring in a possible COVID patient to their hospital. Of course, they are increasing her risk of contracting COVID every time they request another outside study.
6:21 pm
Great news! The Mayo clinic in Arizona emailed saying that they would set up a video consult tomorrow with Dr. Jaroszewski, one of the world's experts on pectus excavatum. Hopefully, we won't have to wait too long for the consult. It looks to me that God is closing the door on Lima and opening the door for Mayo. Pray that He continues to guide us clearly.
6:58 am
Got an email from the insurance company saying that because of the strict state of emergency here in Arequipa the air ambulance will only take Mary Beth on the flight. I feel I need to be with her. Can I drive separately to Lima? Will they let me out of Arequipa?
8:17 am
Mary Beth is doing better today. She feels fine and is in good spirits. But as soon as she gets upright she feels weak and wiped out. Even sitting up has its limits. Paul just escorted her from the bed to the couch downstairs. She eats her meals lying down on the couch. The cat is enjoying her condition and sits and sleeps on her much of the day!
9:10 am
MB has to have a negative COVID test before she can travel out of Arequipa because of the state of emergency. But today's a holiday. Peter and Paul Day. No labs are open that do the COVID tests, so we will have to wait until tomorrow to advance. Thankfully, Mary Beth seems to be stable.
As lots of people want to know what is going on with Mary Beth's health, we will be updating this page several times a day instead of trying to update everyone personally. Thanks for praying.
This morning a got a call from the emergency evacuation insurance company at 2:10 am. They are in the UK, so that is a normal-be-awake sort of time of day for them. Yesterday, they had asked how early they could call and I told them that if they had something important to tell me to call any time. Humorously, he told me that they would be calling back later in the morning after they had more of a plan. Must have been an accidental dial.
8:38 am
The guy from the insurance company called back to say that because of the state of emergency they couldn't get a Canadian to the USA at this time. They aren't even sure they can get an air ambulance out of Arequipa. But they think they can. They found a hospital in Lima that they think can do the surgery. I asked for a phone number of the surgeon in Lima to find out directly from him if they do the type of surgery Mary Beth needs.
9:32 am
The insurance company emailed me saying that we need to get a permission to travel from the ministry of health to be able to go to Lima. We will need to get tested for COVID first.
10:10 am
Talked to CT surgeon, Dr. Homes in Lima at the Clínica Inca. He said that his colleagues do the surgery and asked me to send him a video of all of the CT scans of Mary Beth's thorax. I was surprised how well it worked to take a video of my computer screen going through the slices of the CT.
1:48 pm
I contacted a lab about getting the COVID test done. Since today is an all-day curfew and tomorrow is a holiday (Peter and Paul day), they said they can't do it until Wednesday.
1:54 pm
Tania Catacora, the director of MMI volunteered to help us find a lab that is open to do the test at the latest tomorrow. Pray she can find a functioning lab.
2:43 pm
Tania can't find any labs open today. She promised to keep searching in the morning.
3:12 pm
Mary Beth's mom found this article about another woman with a very similar experience. https://dailyjournalonline.com/news/local/local-woman-has-new-lease-on-life/article_0ae31a21-3df0-562c-bb8a-600aa724ba70.html
As you my know, Mary Beth hasn't been feeling well for a little over a month. It all started with a migraine, and then daily headaches. We got an MRI of her head. Normal. EKGs. Some benign abnormalities. A 24-hour heart monitor (Holter). Some runs of increased heart rate, nothing definitive. Checked her vision. Close to perfect (and she still married me! Love IS blind). Orthostatic blood pressures were very abnormal however. Some rib chest pain on Monday gave me a clue to what turned out to be the diagnosis.
Mary Beth was born with a pectus excavatum abnormality, which is when the sternum goes inward and can put pressure on the heart, affecting its ability to pump blood. Growing up, while playing with classmates, she noticed that she was very short of breath after running short distances. She was diagnosed with asthma and given inhalers that didn't really help. Monday night we got a CT scan which confirmed what we suspected: Her heart is getting squished. Unfortunately, I couldn't find anyone in Peru who does this operation on adults. It is usually done earlier in life. There are places in the USA and Canada that do the surgery, but with the borders closed to international travel how do we get there? We have evacuation insurance with Aetna and they are currently working on getting us to North America, though we don't know if it will be tomorrow or in a week or even where we might be going! In the meantime, Mary Beth is very weak and can't stand up for more than about 30 seconds at a time. If she is lying down, she feels okay.
Her heart is squished like a jelly bean in this CT scan.
Here is Allen's CT of the Thorax. The heart isn't being compressed.
Pray that we can get her to North America soon and that the surgery is successful.
