Buckle up. This is a long one.
We have had several weeks of ups and downs, mostly due to scheduling. It has been one headache after another. Patrick isn't exactly holding steady in his symptoms but I'll talk about that later.
In the last blog post I announced Patrick was going to leave for Seattle for his gastric scans on October 26th. We found out on the 25th that those appointments were canceled in favor of the scans being done in Fairbanks.
This was abrupt and disappointing. Patrick's discomfort has been increasing, and this abrupt postponing of scans that had by the grace of God been scheduled for the end of October, would now be put off indefinitely because they had to be done in Alaska.
The rest of that week was spent soaking in high amounts of stress, prayer, and desperation.
Patrick had a follow-up appointment with his Internal Medicine primary care physician scheduled for Monday. Patrick is loquacious at best - I tell people he is the Chatty Cathy of the family. But he is talkative in ALL situations, and through all emotions. That includes anger. (We established early on in our relationship that he is a “steamroller,” and I am quite the opposite!)
On the morning of the 31st Patrick was heated like a freight train that had lost its brakes. Burning red hot, his anger and desperation had cost him sleep and peace all weekend, only adding to the extreme symptoms he already endures all day, every day.
He was spoiling for a fight, and said he already had his words planned out for the doctor. The fight he was anticipating was the fight for his life. The canceled scans were being scheduled months out in Alaska, therefore indefinitely prolonging Patrick’s suffering. This delay would postpone the scan results getting to the transplant team in Seattle, and if those results are delayed, so too is the decision of whether Patrick is eligible to be put on the transplant list.
Also delayed is the eventual resolution of his symptoms, however that might look. This could mean getting on the list earlier than expected and getting a transplant, or it could look like finding cancer or another cause of his gastric discomfort and pain. In many cases both would lead to treatments.
But sometimes it feels like the only people really pulling for him and supporting him are the ones that don’t have anything to do with his medical care. When it’s a medical professional’s wording on reports that we perceive as inconsiderate of Patrick’s struggles and poor quality of life causing these scheduling snafu’s, I’m as outraged and as desperate as he is. I feel like his closest ally - at his side, my hand on his shoulder like a team of firefighters about to rush into a burning building.
And if the scans were to reveal cancer? That is a bridge we would cross when we got there. But it’s a bridge we would rather have in our sights than continually waiting to see if it’s around every corner in our path.
Patrick left for his appointment and I nearly succeeded in not thinking about what was happening at the doctor’s office. The scenarios playing out in my mind varied from the doctor dropping Patrick as a client to law enforcement being called. Patrick is nothing if not a passionate man.
His text came in at 8:35am.
“[The doctor] was amazing and took all my anxiety away in one fell swoop.”
Cue the sudden drop in adrenaline and the rush of endorphins!
He told me she said all the right things - that she understood, that she cared, and that she would do everything in her power to schedule those scans before he was scheduled to meet with his primary doctor in Seattle, the heart failure specialist. She said she understood his anxiety and understood the urgency to get the scans completed. She said she would try to get all the scans schedule in the two weeks following the appointment.
Lofty goals, and goals that eventually were a bit more spread out than we had hoped, but she achieved the ultimate one - to have all the scans completed prior to December 5th.
Patrick had his first scan, the gastric emptying scan, on November 2nd. (This is where I added the note at the top to buckle up. This is going to be lengthy).
We knew from the initial instructions for the Seattle scan that he had to eat a meal containing radioactive isotopes so they could watch the food move through his system. The seattle instructions said it would be a jelly sandwich and an egg sandwich.
When I tell you the amount of fear this instilled in Patrick and I was through the roof, that might be putting it nicely.
If he eats a cracker he feels extreme stomach pain within minutes. A bite of a kids pizza crust here or there can make the pain excruciating. And if he indulges more than that, the pain is such that it radiates between his stomach and his heart in a connection he can’t explain, which makes him fear v-tachs. And when you fear a v-tach and have an implanted defibrillator, well… The conclusion is obvious.
So for a hospital to instruct him to eat that amount of food, even though at Fairbanks Memorial we found out it was just a couple eggs and a piece of toast, we were terrified. We asked people to pray because to Patrick and I, this spelled disaster.
That morning he called me to say he had eaten the food and was nervous about the test. His stomach was already starting to hurt. It’s terrible to know your spouse is in pain and being powerless to stop it.
He called an hour later to say that something odd had happened. He said the pain had risen to a 5 or a 6, when he is normally about 4 or 5 these days, but then it had GONE BACK DOWN.
Back down.
To a 4.
Solid eggs and an entire piece of bread… and he was a 4.
Call it a coincidence, or whatever else you want to call it. There was no pain medicine, and the only thing making those eggs different was the radioactive isotope in them.
We call it a miracle.
And if I may say so, over the years I have become more of a “Things happen for a reason” person, mostly because of Patrick’s medical journey. For instance, in 2007 we went to Anchorage because it had been determined that some of his two-year-old pacemaker leads may have been malfunctioning. He was due to go under the knife in a couple days when he began telling me he was beginning to think that something was wrong, or that something bad was going to happen if he went through with the procedure.
I, of course, believed he was nuts and that he was just scared and attempting to talk himself out of the procedure. I was also about 37 weeks pregnant so needless to say, I wanted to get it over with and go home to my OB and the delivery of our second child.
So we ended up in the pre-op room with a wonderful nurse. If memory serves me right this is the nurse that Patrick pranked and the result was that she smacked him. She was poised to insert the IV needle into his arm when he jumped, scaring her. And to this day I feel zero enmity towards her. We laughed, she said she was a mom, and told him to never do that again.
When she was done with the entire pre-op process she left the room, only to come back a short time later to apologize and tell us Patrick wasn’t on the doctor’s schedule so the doctor didn’t even know he was at the hospital waiting. She told us we would hear from them about rescheduling the procedure.
Instead someone called us and said that same doctor had seen Patrick hadn’t had a heart cath done in two years so he ordered one to be done prior to the pacemaker lead procedure.
During that heart cath they found Patrick had four blockages in his arteries that needed to be addressed.
Four.
And when they opened his chest to perform the surgery they ended up doing six.
Now, imagine if Patrick had been put under anesthesia, his body already stressed due to heart failure and inflicted with even more stress of a procedure that required implanting the ends of these leads directly into his heart tissue. Imagine that procedure being done with six blockages in the heart.
So do I think someone was watching over us in those days, when we assumed our visit to the Anchorage hospital would be in and out? I absolutely do. Call it God, call it the universe, call it anything you want. But Patrick was not meant to have that procedure the day the doctor didn’t have Patrick on his schedule.
(As a side note, five days later I went into labor and delivered our second child on another floor at that very same hospital. Patrick’s nurse wheeled him up so he could be there. That’s our second birth story. Quite unique!)
So call it what you will. I believe things have played out in Patrick’s life exactly the way they were supposed to. This includes things that have happened in the past, things happening right now, and things Patrick is currently going through that will be used for a purpose in the future.
Patrick’s gastric emptying scan showed nothing out of the norm, so the second scan done on November 8th was a biliary scan. This one also went off without a hitch, and the results came back perfectly normal.
One thing I would like to note here is the wide range of emotions going on inside my mind upon hearing the results of a biliary scan. Yes, normal was good. Yes, it means we move onto the next scan and proceed as planned. And I would never want a negative result from one of these scans. One of the things they are looking for is cancer. The C word. Horrifying in its own right.
But upon hearing the biliary scan was normal the fact that we were one step closer to the heart transplant brought instant tears to my eyes.
One step closer to Patrick getting on the list.
One step closer to Patrick moving to Seattle without us.
One step closer to the call saying there is a heart available.
One step closer to the do-or-die surgery that could save Patrick’s life or end it.
I have talked to a lot of people about this journey and one thing I always say is it's a bittersweet one. The things we look forward to are accompanied by unimaginable hardship. At times it feels unfair. At others, miraculous. There may come a day when someone else’s heart beats inside Patrick’s chest. How much more awful and how much more wonderful can a single circumstance be?
I often say, “One day at a time. One step at a time.” That reminds me of the Serenity Prayer Patrick and I memorized when we were doing Celebrate Recovery so he could enter the local jail to do prison ministries.
God, grant me the serenity
to accept the things I cannot change,
the courage to change the things I can,
and the wisdom to know the difference.
Living one day at a time,
enjoying one moment at a time;
accepting hardship as a pathway to peace;
taking, as Jesus did,
this sinful world as it is,
not as I would have it;
trusting that You will make all things right
if I surrender to Your will;
so that I may be reasonably happy in this life
and supremely happy with You forever in the next.
Amen.
We live day by day right now, waiting for the next step, and the next step, and the next step. Right now that’s a colonoscopy on the 18th and whatever discomforts and hardships Patrick will have to endure in the day or two leading up to that procedure.
And God willing, soon after that we will have an official transplant list determination.
In the meantime we wait and we trust in God’s timing. Patrick endures his PTSD from so many defibrillator shocks, and I watch him suffer, helping when I can. The kids and I deal with his “paingry” as best we can, and we laugh and smile on the good days when he's a 4/5 instead of an 8/9.
I’ll update again when I have more information, possibly not until after the December 5th appointment. So in case I miss it, happy holidays and have a great Thanksgiving!