I want to thank you all for your support and putting up with some of my silliness on the blog these past few weeks. Laurie figured out my goal was also to entertain myself. It worked – really helped to pass the time.
I have tried to give you a flavor of what it was like to be locked in the Spa for so long, to share how supportive Lou was, and to describe a little about the impact of Covid-19 on the staff. I kept an upbeat attitude, partly because that is my nature. But also because I wasn’t going to worry or panic until we knew what was going on.
I wasn’t always in a Zen state, and I would like to share a story that shows I was capable of freaking out, of letting anxiety get the upper hand. To set the stage for this tale, you need to understand my mindset during the first week of this adventure. . The doctors and nurses in our local ER made it clear my situation was serious – “this is the highest creatinine number I have ever seen,” “we need to transport you to a hospital with kidney specialists”. OK, I kind of had the big picture, but wasn’t too concerned. I mean, I didn’t feel all that bad, just hadn’t been able to keep anything down for a week or so.
The first days at Maine Medical in Portland – aka the Spa – are a bit of a blur. We weren’t getting much communication, and the doctors seemed not to know what was going on. I was prepped for dialysis by getting a catheter installed in my chest. I immediately felt better after the first dialysis session. I made a conscious decision not to google kidney failure, high creatinine values, can dialysis be temporary?, can kidney function recover?, or anything else related to my situation.
We – meaning Lou and I – were pretty frustrated by the end of Week One. Is there going to be a kidney biopsy or not? If so, why are we waiting – is it a scheduling issue, or is it something to do with me? We were told they couldn’t do the biopsy because my platelets were low, and that increases the risk of bleeding. Low platelets happened sometimes after dialysis, and not something to be overly concerned about. It could take four or five days for the platelets to return. In the meantime, I had more dialysis treatments and felt better every day. The doctors said my lab results, the ones indicative of kidney function, were improving, and … the most scientific measure of all – I was starting to pee more – confirming these lazy ass kidneys might be waking up.
On August 28, eleven days after arrival, we finally got some more specific information; fortunately Lou was visiting when we got the update. A specialized lab test result came back and showed I had H.I.T. – Heparin Induced Thrombocytopenia. WTF is H.I.T.? Apologies for the cursing slang, but this is indicative of the mood at the time. H.I.T. is an allergic reaction between antibodies in my blood and the heparin used to reduce clotting risk during dialysis. It apparently occurs in less than one percent of patients treated with heparin. Then comes the kicker – treatment involves a continuous IV of an anticoagulant for five – yes five days. (There was another f-word in there when I heard this news.) Even I understood this meant five more days in lockdown.
We were assured this was treatable and would have no long lasting effects. Dr. M also explained they would be transitioning me to an oral anticoagulant – warfarin, also known as coumadin. The risk was developing a DVT – deep vein thrombosis – in the extremities, a blood clot in the lungs, and so on. I don’t claim to have perfect recall of this conversation.
The stage is set. My kidneys might be recovering, but they still don’t know what caused the initial failure. They are wishy washy about doing the kidney biopsy. We are just going to trudge along in the Spa for at least 5 f’ing days more and see what happens.
Friday, August 28, Day 11 – a fun visit with Lou, the consult with Dr. M, and a relaxing afternoon. Turkey Tips for dinner. I had calmed down about the five more day announcement. About 9pm, I get an email from my MaineHealth App. Clicking shows I have been scheduled for some type of Vascular appointment at 9:00pm. My thought- oh boy, these people really don’t know what is going on. A procedure at 9 pm? Nah, just another scheduling mishap.
My nurse comes in … “your chariot is here …”
Me – “Huh? Where am I going? Why am I going?”
Nurse: “Not sure.”
Me: Imaginary Brain begins to take over Logical Brain. WTF is going on? Is something wrong? Did a lab test show something wrong? Do I have a blood clot? Why hasn’t Lou sent his usual good night text message? Did they call him, and is he on his way? WTF is going on?
I was overreacting, but the feelings were real at the time. I proceeded to get on the stretcher and get wheeled down 5 floors and through the deep dark halls of the basement. All the time, vacillating between anxious and being pissed off. We enter the radiology/imaging department and they park me next to a room with a Cat Scan machine. Imaginary Brain .. “cat scan – is that how you check for blood clots, aneurysms, WTF …”
A tech comes out from a different room … wheels me in and I ask what is happening. He says he would be doing an ultrasound check for clots in my lower extremities.
Me: “is this a routine check or are you looking for something specific? No one told me I was having this procedure.”
Tech: “same thing happened to another patient earlier this week. Don’t worry, we will be done in less than half an hour.”
The tech proceeded to do ultrasound on both feet and legs. I asked if I was going to live, and received a non-commital positive response. They finished up, and a transporter came to wheel me back to my room. We go up 5 floors in the elevator, and as we circle around to my room, my vision goes blurry – I start seeing pink spots … yes, pink. Am I bleeding out? WTF is going on? The nurses check my blood pressure – 195 over something – too high. Was it from the ride in the elevator, or from me just being anxious and upset? I get back in my bed and they watch me – I calm down and vision comes back to normal.
My night nurse, Devon, lets me rant and talks me down. I am still stewing, but calming down. I am still worried about Lou. So finally, at midnite I call him … I didn’t go through the whole saga, just said I was worried because he didn’t say goodnight as usual, and I thought he might have fallen asleep downstairs. Nope, he had just fallen asleep early, snug in the bed with the pups, getting a really good sleep ‘til the phone rang. Oops, maybe this is when he started wondering about the Return Policy … In his morning text, he said just the the right thing …
When the medical doctor came in the next morning, I did lay out a few comments about their lack of communication and scaring an old lady. Apologies were made, and they explained the ultrasound was a routine procedure to determine how long I would be on warfarin when I left the hospital.
If you have read this far, you are probably thinking, “Dang, this woman can go on, making a mountain of a molehill.” True. I overreacted. In my defense, it is just possible this Anxiety Attack had been building over the past weeks. I could have saved myself a lot of aggravation by doing one simple thing. I should have just sat on my bed and refused to go anywhere until I knew where and why. A doctor had entered the order shortly before, 9pm, so someone had to be around who could have answered. That is my story and I am sticking to it!