Thursday, May 19, 2016
I realize I haven't posted much on the ol' blog recently. There's been a lot going on. Let me fill you in. Actually, I'll write a bit while you go grab a cup of coffee or tea.
So I finally found out that I will not be needing open heart surgery at this time. I have this random bridging vessel between my weird superior vena cava and my other vessel that seems to be able to handle the additional pressure. They will simply plug off the weird vena cava below the bridging vessel. My stenotic pulmonary vein is also not as severe as originally thought, and stenting would only cause further issues down the road. If I would need it fixed in the future, full open heart would be the only option. They'll fix me up in July, keep me in the hospital overnight for monitoring, and then I'll be good to go.
Isn't that rad?!
I'm feeling much better mentally and emotionally, too, for those of you wondering how that status was doing. The antidepressants and sleep medications really have helped and I am feeling much more like myself. I've also cleaned up my diet and feel better about myself by not ingesting a lot of preservatives and boxed foods. I've been drinking a lot of water and green tea, and imagine it flushing away stress and toxins.
Also, this past weekend, this happened:
I attended my commencement for earning my Master of Science in Nursing Education this past Saturday. The top photo is of my cap, which has a photo of my sister, Becky, who passed in 2014. I told her that I would finish this degree for her. The bottom photo is of my folks and Roxy the Cylinder who comes with me wherever I go. The purple cords, for those wondering, are for Sigma Theta Tau, the International Nursing Honors Society. I don't think I've ever had a photo where my cords are on straight.
(Nope, I just checked my BSN graduation and they were crooked, there, too.)
I'm so grateful for my family and friends for their support as I worked my way through this program. I thought I wasn't going to be able to finish, due to my health issues, but my advisors at University of Phoenix and I worked together to find a solution, and I was able to do my MSN project "virtually" which means I imagined a presentation within a virtual setting and I didn't actually implement it in my hospital. Because I still can't drive, this was a huge relief to me and I finished the project with good results. Now I just have one more two-week course to get through, where we turn in our project work, and I'm through! I'll be able to sign MSN, RN, CHPN after my name as soon as my degree confers! :)
Also, it should be said that I've heard a lot of schmuck talked about Phoenix. My program was one hell of a tough program which required hours and days and weeks of diligent research and time in front of the computer. For almost two years straight, minus holiday breaks, I have been in front of this screen typing discussion questions, reviewing literature, writing endless papers, and assembling an educational curriculum on end-of-life care from scratch. It's not easy, and those people who say it's a crap education should try it themselves.
Thank you to you all for reading, and I'll be back soon, promise! :)
Monday, April 11, 2016
I asked for help today. As hard as it was to pick up the phone and dial up my former psychiatrist after so many years, I did so. I have carried on for over three months since my initial surgery going up and down and up and down… and then the downs became longer and the brain fog became thicker.
While the fog may be primarily due to all of the medications and anesthetics and sedatives, it’s taken on a more familiar tint of gray that I know well. There isn’t much for me to “talk about” however I know when the chemistry in my system becomes darker and uneven. All there is now is to figure out which medication won’t mess with my QT interval and cause more cardiac issues (even going on an antidepressant becomes an adventure, now, see?)
I know that this is one more step in the road, and that it will be okay. I am not in a severely deep, dark place – and for that I’m grateful. I felt that I was on that bumpy, slippery cobblestone road, though. I’m sure that hormonal variances have assisted in the deepening gloom, but I’m not going to “wait and see” anymore. This is a hard enough journey – and I miss my mind. I miss finding humor in just about anything, although I still do laugh at ridiculousness. There was an episode I just watched of Downton Abbey which made me giggle for awhile. It was then that I realized that I didn’t recognize my own chuckle anymore.
My goal is to stop this in its tracks before it goes any further. I am quite aware that I’m not the only patient in the world who experiences these darker moments, and I’m blessed to have recognized the signs. I can only hope that this chapter will assist more out there who realize that it’s perfectly fine to pick up the phone and get back to "normal." Or, if you’re also a Super Mutant, as normal as possible.
Friday, April 8, 2016
“You do know there is a chance that you won’t be able to return to work as a nurse.”
That is what my physician told me at a follow-up visit a few days ago. I appreciate this. I appreciate his matter-of-factness and his ability to be up front with me. While I clarified with him that I may not be able to return in the capacity that I’m accustomed to, I still thank him for being one of the few who have the balls to tell it like it is. I see so many physicians say, “Oh, you’ll be right back to where you were.” I may not be, and that is something that I am in full realization of.
I was still getting my mind back from my December surgery, when I was given at least 8 mg of Versed and 2 mcg of Fentanyl for my TEE/cath a couple of weeks ago. I often wonder if I’ll ever get my sharpness back. With the added threat of “pumphead” that I wrote about a couple of months ago, this is my main concern. It’s frustrating not being able to come up with a word that I use every day. I’ve had to ask family and friends, “Hey what’s that word that means this and that?” I have lists all over the house of things that I am supposed to do, and then I promptly forget about the list. I’ve missed telephone conferences because I didn’t have them written down in my calendar… but I’ll forget to check the calendar.
I was also asked by my Doc if I’ve experienced concerning depression. I admitted that I’ve had my tough moments but I’ve always been able to find my way out. I know that I have resources for if, or when, I need them, and I’m not shy about asking for help. I also know that any potential anti-depressant use may cause further cardiac problems depending on the drug class. This foggy brain has a lot to do with all of this. While I’m frustrated with my physical limitations, I’m even more frustrated with the additional mental limitations.
That’s where I am right now.
I’ll be fine, I will.
Thursday, March 31, 2016
So, I’m SURE you’re just dying to know what it’s like having a transesophageal echocardiogram (TEE) and a cardiac catheterization all in the same day!
Mom and I got to the hospital at 9 a.m. and were promptly ushered to the waiting area, where the wait was maybe around five minutes. A lovely woman, Renee, was at the cath lab concierge desk (yes, that’s a thing) and was wonderful and calming. I was shipped back to a corner suite where I was informed the TEE would be taking place, and afterwards I would be hauled down the hallway to the cath lab. I changed into my always stunning green hospital gown and skid-free socks and cuddled up under warm blankets due to the frigid atmosphere of the room. Roxy the Oxygen Tank was replaced by wall oxygen, and I was fitted for my very own capnography cannula. Try talking with a spoon over your mouth and you’ll get the general idea of what that’s like.
I informed the RN that I was happy to receive an IV into my right arm, but IVs into my left arm usually didn’t turn out that great with fainting and weird results and things. She skipped off to consult with the MD that would be performing this procedure after I explained my funky anatomy to her in great depth. (It turns out that the MD had already called the MD who read my original CT angiogram to confer as to exactly what the hell was going on with me. #Mutant) So, I had an IV in each arm and an itchy nose. Naturally. I also was given Valium and Benadryl. I felt a bit mellow, but that’s about it.
The MD who was doing the TEE came in, and was full of good energy and evidently very excited to be on my case. He showed the CT video to the two nurses who were in the room. One RN hooked up a double syringe to my right arm which held the magic meds, Fentanyl and Versed. They helped roll me onto my left side, gave me a lovely pink bite block (to protect the doc, they said) and injected me with the medications.
All I remember after that was what seemed to be a twirling black Rubik’s cube heading directly down my throat. As I write this, two days later, it still feels like my esophagus is pouting in a dark corner, and pudding and cold drinks are about all that feel okay going down that pipe.
For my ACLS folks out there, this might amuse you. When I woke up, I was smilingly informed by my nurse that I had questioned the MD at great length as to what his favorite color was, as that would be their key to know if I’d had enough Versed. (For synchronized cardioversion during heart issues, patients are usually sedated to the extent that they can’t remember an answer to a simple question.) He told me “blue,” and apparently I answered him correctly when he quizzed me later on. I have no recollection of any of this.
I was also informed that they had to give me almost double the medications needed because I just wouldn’t “go out.” That’s normal for me. Takes the pharmacy and a half to get me comfortable and allow tubes to go places without me going all velociraptor on people.
I remember waking up somewhere in the cath lab, looking at a monitor, and telling the second doc that I was doing fine. I bemusedly watched the majority of this procedure, fading in and out. I always liked watching the contrast going through vessels when I was able to participate in the cath lab in nursing school. Now it was my vessels they were scrutinizing, and I had a great view. The only time I was really uncomfortable was when they did the radial cath on my left arm which was quite painful and they seemed surprised when I cried out. I was given even more Fentanyl and was okay after that. I didn’t feel anything else. I heard the words “wedge” and “stenosis” and “holy shit” a few times. Turns out that my single left pulmonary vein is dangerously narrow, and will have to be stented no matter what.
I remember having pressure put on my arm and groin by a young man after the sheaths were removed. I remember Mom and Dad coming into the recovery area, and I asked Dad how his lunch went. I vaguely remember going up to the short stay room and engaging in enthusiastic conversation with my nurse up there. I dozed off and on, and dove into my dinner plate when it arrived since I hadn’t eaten anything in almost 24 hours. It was salty but delicious chicken stir fry and the bread with it was probably the best thing in the world. The five hours flew by that I had to remain on my back, and some back discomfort was all that I noticed. I didn’t need pain medications for that as I knew it would go away once I could stand up. Being able to walk after hours of lying down is a lovely thing.
We finally arrived back at the parents’ house at around 10:30 p.m. and I fell asleep quickly again. It has taken until today for my brain to feel clear(ish) from the medications. I slept the majority of yesterday and all of last night, and even had a nap today. I removed the dressings and was surprised at how sore the two puncture sites are but have assessed them and they appear normal.
The MD team are going to confer as to what the next steps are. There seemed to be some question as to the “bridge” that was mentioned by the cardiothoracic surgeon, meaning that nobody else saw a bridge. I’m not sure as to what the next few weeks will bring, but I was told that it would take about that much time for them to get their plans thought out. At least we’re through this part and on the path to something or other. Right?
Monday, March 21, 2016
I typed in "stagnation" but put in a space accidentally. It sounds like some sort of bachelor party movie, or a scary foreign country, so I left it.
It’s about time for an update, yeah?
So last week I was told that my procedures, which were scheduled for tomorrow, had been canceled. Why? I don’t know. At least they didn’t think I was an emergent case. This morning they called and I was rescheduled for next week. I guess we’ll see how that goes.
So of course, after I had that news last week, I had a mini-meltdown, just pissed off and frustrated that three months has already passed and now this is going to be stretched a little bit further. Or a lot further. Who knows. I’m just so ready for all of this to be done. Most of my frustration stems from not being able to hop in the car and just drive anywhere. I can’t get on a plane and travel to conventions. I have a recertification course coming up on Saturday and have to figure out how many oxygen tanks I need, who is picking me up, when I’m coming home, and how many pairs of socks I have to pack because maybe I’ll be spending the night. Usually I’d jump in the car with a cup of coffee, hope I don’t get lost, and listen to loud music while stuck in traffic on the way home. I don’t like depending on people to live my daily life.
In other news, I had a guy from Home Depot come out and give me an estimate on what it would cost to get rid of the horrible white tiles on my counter and install granite and a backsplash. I fell in love with a sample, "Golden Crystal," which was of course towards the high end of the cost; Mom always said I had expensive taste, and I guess I do. Everything I love tends to be higher priced. I figure, though, that I really want to LOVE my kitchen and why not spend the bit of extra money to really make it special? I spend a lot of time in there. This project will be put off for at least several months, but I can’t wait to have it started and finished. I’ll also refinish my cabinets, as they’re good cabinets and just need to be re-stained.
|Nasty white tile and grout and green walls|
I may have my master bath done at the same time with the same counter, since the cabinets are the same in there. That leads into backsplashing (is that a word?) above the shower, or even considering having a contractor come in and tear out the shower liner and putting in tile. I change one thing, I guess I have to change everything. This is the stuff I think about when I’m sitting in bed at night, waiting for the sleepy gnomes to take over.
This coming week I’m also going to start down in the garage, trying to make sense of some of the disaster area down there so I can clear out my storage unit. I have a lot of stuff that belonged to my sister, and I want to start putting some of it in this house (and save $80 a month on top of that). I love looking around and seeing things that belonged to my family, because they’re who and where I came from.
Today I also signed up to be a Coach for Team Beachbody. This happened because my Coach and friend Karen talked me into it (I save a bit of cash on the shakes, which I love). Actually, I’ve been doing well on the 21 Day Fix program, with extreme modifications. I’ve been following the food plan to the best of my ability, and do what exercises I can while attached to the oxygen tubing. They have this modifier on the program, and sometimes I will have to modify her modifications, but I get through the exercises one way or another. Such things like Burpees I’ll skip entirely but will jog in place or will rest, depending on what my body is doing that day. I don’t want to risk anything strenuous, but I know that it’s not good for me to just sit and do nothing all day. Try doing exercises while attached to a 50-foot oxygen tubing and let me know how that works for you. It’s a pain isn’t it? I’ve choked myself a few times already and am surprised I have ears left from the number of times I’ve yanked the tube off with my feet. Anyways, I am not going to get into trying to make money off this, because I have other things to worry about, but do hope I can inspire people who didn’t think they could improve their health due to concerns or just getting over the fear of “I can’t do that, I’ll die.” To put it bluntly, sometimes it’s nice to have something to focus on for half an hour instead of letting my mind go places it really shouldn’t. And Autumn, the trainer, is affable. I tend to cuss at her a lot on Leg Day, but she doesn’t seem to mind. If you want the URL to my website, let me know.
So that’s about it for now. Hugs and love.