When you’ve spent most of your life going to doctor appointments, staying in hospitals, having tests and surgeries, and getting blood drawn, there isn’t much left that really scares you. I mean sure I have fears, but I’m afraid of spiders and heights and roller coasters and bees… I’m not afraid of needles or anesthesia. I always considered myself a pretty brave person, willing to keep an open mind and keep forging a path forward, no matter what. But dialysis? Dialysis scares the crap out of me. More specifically doing dialysis myself scares the crap out of me. So, here is something that I didn’t even know until about 6 months ago… there are multiple kinds of dialysis. There is hemodialysis and peritoneal dialysis, both have their advantages and disadvantages, but I won’t go into detail because otherwise this would be the longest blog post ever. Long story short, I opted for hemodialysis but getting there has been no easy feat. The way the machine hooks up to the body is through what’s called an arterio-venous fistula. I didn’t know this until recently, for some reason I always had this image in my head that a little port was made under your skin and you just screw a tube on and the machine goes to work. Whoa boy, that is not the case. First, I had to have a consultation with a vascular surgeon. There is ONE in this area, he does all the fistulas. He is one of the best in the business, but he is very busy, it is not unusual for appointments in his office to take upwards of 2 – 3 hours. I met with him for the first time I in Mid-March where they used ultrasound to locate and take pictures of the sizes of my veins and arteries in my left arm (dialysis access is most commonly placed in your non-dominant arm). Two weeks later I checked in for surgery where my Left Cephalic Vein was connected to my Left Brachial artery to form a Brachial-Cephalic Fistula. The procedure was done outpatient and I was home by 7pm that evening. Staples stayed in for 2 weeks and once those came out, my incision started to heal very quickly. I can feel it fluttering, the very technical medical term is a “thrill”. It vibrates, and I’m pretty sure my cat likes to lay next to it because it feels like purring. Kind of a neat party trick though… “hey feel my arm”!
At my six-week check-up, I was told that the fistula hadn’t matured as much as expected at 6 weeks and there must be a narrowing in one of vessels, so I was scheduled for my first fistulagram. The surgeon was on vacation, so they scheduled me for interventional radiology and my-oh-my was this a nightmare. I should have known when they were taking me back and the radiologist didn’t seem to know what he was doing. A fistulagram is sort of like an angiogram where the use a wire catheter and ultrasound or X-Ray to access the blood vessels. 2 hours, 16 needle sticks and one hefty dose of fentanyl later the radiologist invited my mother into the procedure room (HUH?!?!) to tell us nothing could be done.
Two days later I spent the night in the ER having scans of my brain to make sure I wasn’t bleeding from a ruptured aneurysm in my brain. Apparently, patients with polycystic disease have a higher likelihood of developing fatal brain aneurysms… because we don’t have enough to worry about! Fortunately, my brain is just fine, and I was released home with some medicine for headaches. Thank goodness for small victories… I don’t know what I would do without my brain haha!!
The first Tuesday in September, I went back for another fistulagram. This time with the actual surgeon and oh what a difference. Peacefully sedated, and only 1 hour and 2 needle sticks later, the surgeon agreed the fistula had failed and he would need to perform a revision surgery. This will happen on Friday September 20.
So, why did I share all of this with you? What you just read above is just a bit of what I have been through in the last 6 months, just to be ready to start dialysis and be ready for surgery when the time comes. I have lost count of how many doctor appointments, ER visits, procedures and surgeries I have had in the last few months, how many medicines and forms and sleepless nights worrying about “what if”, and the real fun hasn’t even started!
I will continue to share updates as I am able. I still do not have a donor, so if you’re thinking “eh someone else will do it”, I promise you, there is no line of people waiting to have an elective surgery. Please make the call. Please get tested. My life literally depends on it.