Matters of the Heart
In my last post I talked about starting dialysis and mentioned the endurance of my fistula that I have had for over twenty years. The first month it was in operation, however, it had major issues. Clotting issues.
One of the disturbing qualities of having a worm-like vein on your arm is that you can look at it and see it moving. Like, you can see your heartbeat in your arm. For the longest time, I could also hear it when I would lie down to sleep. I guess the sound waves carried through my bedding up to my pillow or something, but it was super weird and distracting.
As gross as that is, it's also how you know your fistula is working. In the first few weeks they started using mine, it would frequently clot. As in, there is a clot of blood blocking the vein and it can't be used. You can see it not moving. This is not unusual, by the way. It's not uncommon to be in a dialysis clinic and to see someone leaving after a discussion of, "you're clotted and we need to send you to the Access Center for a declot."
Back when I started dialysis, there was no outpatient Access Center like there is now. I was sent to the brand new (new in 1999) Heart Hospital of Austin and the cardiothoracic surgeon who had created the fistula was summoned to do the procedure. Declots are no biggie, they don't take very long and you don't get general anesthesia. Just the stuff that makes you fall asleep and not remember anything.
By the third declot in under a month they decided further investigation was necessary. This being the Heart Hospital, they did a standard EKG. Not happy with how that looked, they did an echocardiogram.
I had two sizeable blood clots in my heart and there was damage there from what appeared to be a past heart attack.*
The staff of Heart Hospital were beside themselves. This was the Heart! Hospital! It was as if they suddenly imagined themselves as the stars of ER. A young adult presents with mysterious symptoms in a sparsely populated cardiac hospital. Admit her immediately! Heart Doctors, Assemble!
So here I was, in another hospital for who knows how long to be poked and prodded and studied. I was already depressed about having to start dialysis and now there's something seriously wrong with my heart?
Not to be sidelined when another diagnosis was looming, my mother came into town. We spent the first day moping about my predicament while I got a dialysis treatment and new test announcements. What we needed was some sliver of good news.
Good news? Wait, I had good news! Ryan and I had recently been having more serious discussions about getting married. It was a done deal in my head. I could tell my mom about that!
She was thrilled, and we immediately went into planning mode. Ryan showed up at the hospital that evening tired from work and was accosted with the news that he was getting married.
Let me rewind just a bit and tell this to the best of my ability from Ryan's perspective. Unbeknownst to me, Ryan had plans. Before I landed myself in the hospital, we had been scheduled to take a trip up to visit my parents in Oklahoma. Ryan had intended to ask their permission to marry me on that trip, probably while I was taking one of my daily naps I assume. And then when we returned to Austin make a very lovely and romantic proposal.
With a few words to my mom, I had ruined all of that. Leave it to the McBride ladies to strip any kind of surprise or romance from the process. Ryan did his best to cover his disappointment and called to tell his parents the news.
Suddenly we had Steanses arriving at the Heart Hospital from Houston. Not that they didn't already care about my well-being, but it's a different scenario completely when it's now your future daughter-in-law who is awaiting a potentially life-altering second diagnosis.
So I had lots of visitors during my stay, and not just family members. Because the Heart Hospital was so new, it had a dearth of patients, which if you've been to any hospital ever you know is quite the rarity. Usually it takes a nurse 15 minutes to answer your call button. Here they came into my room to check on me constantly, sometimes two at a time. They all got to know me pretty well and were even in on the wedding planning with some giving suggestions for venues.
I'm sure Ryan was beating his head against the wall as he watched all of this slip out of his control.
I don't remember much about the testing I went through. I know there was a lot of it and I would have something or other done about once a day. Cath lab, x-rays, this terrifying procedure where they stick a tube down your throat while you're still awake (this ended up not being a big deal as they gave me the neat medication that makes you forget all of that).
My stay ended up lasting 10 days, which is an eternity when you actually feel okay and are not sleeping all day. I blame the duration on two factors and they are related.
One, my assigned cardiologist was a youngish man with a lot of enthusiasm for this case. He was going to FIX me if it was the last thing he did. Which I appreciate! To some extent. You don't want a disinterested doctor, but at some point it's okay to just shrug and do the rest of the testing outpatient if the patient feels okay.
My cardiologist was only enabled and encouraged by the brand new Heart! Hospital! They had all of the latest technology and tests to really get to the bottom of the mystery that was me.
After a while it got annoying and I missed being outside. I could roam around the halls and it was a beautiful facility with big sunny windows and and large open areas, but it was still depressing. I wanted to go home.
Finally my doctor threw in the towel. He chalked my clotting up to what had been the root of all problems all along, my kidney disease. One, as I have mentioned before, my disease is largely unstudied and there are still a lot of unknowns surrounding it. Two, one of the peculiarities of my pre-transplant lab-work linked to my disease was an unthinkably high cholesterol level. We're talking in the 900s. (Normal cholesterol lives in the 100s)
Thirdly, transplant medications can be hard on your heart. I had already had high dose steroids on a number of occasions and add in immunosuppressants and that's a lot for your heart to deal with. Poor little guy.
So what to do now? My doctor started me on blood thinners. This would hopefully break up the clots in my heart and prevent me from needing further declots for my fistula (it did). He also suggested not taking my migraine medication as he had a suspicion it was also not doing me any favors. I countered with, "OR, I could keep taking it and not be in the hospital every other week barfing up a lung." He let that one go.
Finally I was free. I remember the sunny, beautiful day in October when Ryan pulled the car around the front of the hospital and packed me inside. I rolled the window down on the way home to feel the wind blowing on my face. Back home at the apartment I was greeted by Jeff the Kitten who I'm not sure ever knew I had been gone.
A couple of weeks later Ryan took me out to a nice dinner up at the Arboretum. I assumed it was a celebration of our 4 year dating anniversary. Afterwards we walked the woodsy path behind the shops. As we stopped to admire the view, Ryan pulled an engagement ring out of his pocket and asked me to marry him. This is what I will always remember as his beautiful proposal, and I never saw it coming. For once I didn't ruin a surprise.
A/N This entry is dedicated to Ryan, for putting up with the McBride ladies. I don't deserve you, but I'll keep you forever if that's okay.
Up next: The New Normal
*Remember in the Austin entry when we had to call an ambulance when I was on the floor of our apartment bathroom not able to move? Yeah, we think that was this incident.