Purple Hair and Giant, Ugly Recliners

In preparation for whenever this surgery is, I decided to cut my hair in order to prevent the inevitable ENORMOUS RAT’S NEST that always happens when you’re on your back for an extended period of time. Plus, if I’m out of work for a while, why not go with some color? And by color, I mean red and purple. It’s subtle until I get into afternoon sun and then it’s like “Oh WOW, I have a rainbow on my head.” The pictures below (before cut on the left) don't properly display the "oooooo" factor. In addition, Roxy the Portable Oxygen Tank was set aside for the duration of the cut and color for obvious reasons: heat and sharp things.
 
 

Also, Mom had her hair washed that day by the lovely Mandi at Pure Expression Salon. Mandi has been the only person who has brought sharp objects near my hair for about 8 years now. She rocks.

We also bought a giant, tan, ugly power recliner for my recuperation. Imagine going to visit Grandpa and seeing the gigantic recliner in the living room, however mine is also overstuffed to within an inch of its chenille-covered life. It’s also awesome. I’m over feeling like someone who needs a power recliner and am relishing the cushy loveliness of this power pillow on legs. [Side note: Thank you to Jerome's, always. I've never had a bad experience with you guys, and our gal took the time to sit me in every single recliner y'all had in your warehouse.]

 

SEXY!!!!!

In medical news, I finally have my angiogram scheduled for next week and will follow up with the surgeon after that. My metoprolol is working beautifully and my heart rate is in the low 60’s most of the time. I’ve been able to putz around the house and have been efficient at homework but am careful not to stress too much. I still read a lot at night about open heart surgery and patient recovery stories. I just found a few books on the Kindle as well, and am ingesting stories left and right. It’s comforting as well as informative, and interesting to note that there are many differences as well as several similarities in recovery. All I know is that I will recover at my own speed and shouldn’t depend on the tales of others to foretell my own experience. I tell the same to my patients: their body is different than their neighbors and each experience will be different. 

Now, back to watching “The Mentalist.” Simon Baker makes everything better.

photo credit: http://www.hdwpapers.com

 

 

Pumphead and Chocolate Pudding

So now there’s a new adverse effect I need to be aware of after this surgery, and it’s frequently known as “pumphead.” (Yes, it makes it sound like I'm some weightlifter on Venice Beach in the 1980's.)

 

Otherwise known as postperfusion syndrome, this effect is thought to be brought upon by the lengthy stay on the heart-lung machine (bypass machine) during surgery. As my heart will have to be stopped, the machine oxygenates my blood and circulates it much as my heart and lungs do normally. Unfortunately, the brain does not always receive the appropriate pressure and oxygenation during this bypass, leading to cognitive deficits such as memory loss, slower processing, and other issues. Evidently, from my reading of blogs and medical literature, this is quite common and affects each patient differently. I’ll be requesting more thoughts from my medical team as I see them individually. While I can deal with the physical limitations of the surgery, I’m having a hard time imagining trying to remember names or words… and I’m having a hard time imagining what it might do to my mental capacity for my work as a registered nurse. I can only hope that this effect won’t occur, and if it does, it will be minimal. I guess it’s time to look into brain exercises to do afterwards. J 

 

Petting Larry, my parents cat, should qualify as mental exercise.

 

I know I mentioned before that I would be posting photos of my visitors and their gifts, however I have changed my mind on that for now. The outpouring of love and support is what keeps me going much of the time, and I wish to contain that, somewhat selfishly, for now. I hold it very close and will share it openly sometime in the future but, at this time, I view these photos at the times that are particularly rough. Especially this one...

 

My Irish twin asked her brother to bake me an open heart bread. <3
I love her for this.

 

In my continuous planning for the (unknown) date of surgery, I am on the hunt for a recliner. Since this is a piece of furniture that I will be glued to for weeks at a time, it needs to be a power recliner and very comfortable. I will be limited in my pushing and pulling allowances, so an easy-to-reach mechanism is important, as is fluffiness and ease of repositioning. My folks already have quite the array of medical equipment … I’m already using a shower chair due to the shortness of breath, and I have to tell you that I love that thing. It’s so nice being able to wash my hair without feeling that I’m going to fall over.  

I’m also fighting with my nutrition at the moment. Since my first surgery and subsequent hospitalization in December, my appetite has been diminished. While this is normal since I’m not moving at the speed of light like before, I was still surprised to see that my calorie counts have been well under 1,000 a day for the past few weeks. I am focusing on more nutritious foods now and not worrying (trying not to) about the calorie count; I still ensure some extra good fats such as avocado in order to be sure I don’t go into starvation mode… I am determined to get my body into the best possible health well before this operation. Still, I do have treats… chocolate pudding is a favorite. Dad always brings me some when he goes to the grocery store. He’s rad like that.

Avocados and chocolate pudding. Breakfast of champions.

 

I’ve asked a friend of my sister’s for a photo session after I recover from the surgery. She’s an incredible photographer, and has agreed to help me celebrate a new life as well as possibly showcasing the scar that goes with it. I’m not concerned about the scar, and think of it as a display of survival and diligence. I celebrate the fact that this surgery has the potential to change my life for the better; after all, if this condition hadn’t been diagnosed, there would have been a good chance I wouldn’t be here much longer. Thank you, Aileen, for helping me with this project down the road. I appreciate you. J  You all can check her Facebook to see her photographic genius here.

Thank you all for reading. I know at times this has been difficult to comprehend as I simply write my thoughts without an edit in sight. xo

Honesty

It’s about 12:30 in the morning and I am awake thanks to the hiccups.

I woke up to Guy Fieri shoving what looked to be a large piece of chorizo into his gob. It took me awhile to realize that I was not an unfortunate bystander on the show and that I had a remote control that could turn that off.

Anyways…

I also realized that I have a lot of shit on my mind and I need to get it down so I can be at peace and maybe get some sleep. This post may contain a lot of cursing, but it’s my brain, so I’ll apologize and leave it at that.

See, having been well trained on Maslow’s Hierarchy of Needs as well as stages of loss and grief, and a lot of other psychological goodies that pertain to nursing, I realize that I’m going through a lot of emotions and levels of strength and other things that just really tend to f*ck a person up.

Yesterday and the day before I started into the anger phase. The “why me’s” and the “dammits” and the “I’m irritated and mad at this bread crust for no reason at all.” Today it kind of came to a head when I was calling a million offices trying to schedule a million things – namely this damn cardiac CT scan! Three days ago I called my cardiologist’s office to find out about setting up my second attempt at a CT scan. (Remember my first attempt?) I was told that he had gone on vacation early. I asked politely to have another physician please order the scan as I was on a heavy dose of metoprolol and it wasn’t awesome. Two days ago I had called my cardiologist’s office and was told that he was not, in fact, on vacation, and was inquiring after my heart rate, to which I replied it was fine, PLEASE ORDER THE SCAN. Today I called the cardiologist’s office to inquire about the date for the scan, and was told the same thing as two days ago, that he would order it. I said, please do, as it’s Friday, and I have an appointment with the surgeon on Tuesday.

 

 

Are you still with me?

A couple of hours later I called the CT/MRI scan place myself just to see if the order had been placed. I now have an appointment IN TEN DAYS because there is one cardiologist at this place one day a week (Wednesdays) to perform the reading. So that means I not only have to reschedule the surgeon (for the second time) but now have to be on the metoprolol another ten days, therefore in an exhausted and weakened state. I’m only halfway through this shit? Are you f*cking kidding me right now? Doesn’t anyone care that I’m stuck at home unable to do anything because I feel as if I’m 98 years old with half a lung and the heart rate 2/3 of what it is used to?

Mostly, I’m angry because I’m weakened and so much of this crap is out of my control.

It was another huge wake-up call…. Personally and professionally. No wonder so many of our patients don’t follow through with follow up care. It’s damn impossible!!! I have the fortitude to sit here and insist on appointments and care, however I can only imagine not knowing the language, or being sicker than I am and not having the strength to deal with the constant back-and-forth.

I haven’t considered myself “weak” in a lot of years, and it’s really frustrating. I know my inner “me” is NOT weak but rather strong. However, I also see the expression on children’s faces when I drag my oxygen tank into the elevator, and I see the look of pity on adult’s faces when I walk by them. I’m not my equipment, people. I’m healthy other than a mutant heart, a recent kidney injury, and a medication that makes me feel like a zombie. It’s also amazing how short of breath I get doing random things like trying to locate a bagel in the freezer.

I’m still that stubborn mule, just a little pissed off and over-emotional at the moment. I almost broke down when replacing one of my oxygen tanks because the regulator wouldn’t snap on correctly. When did my patience become that of a gnat on steroids?!

 

[When doing a search for "zero patience," I ended up with a lot of zombie pictures and something called "patient zero." Which, I guess, is about what I feel like half the time, but still not even relevant to this so I'll skip it. Instead, here is a photo of what I feel like on metoprolol...]

I'm ready for my modeling career!

 

I get jealous watching people take walks outside. I follow Facebook postings of travels with glee, living vicariously through my friends who are frolicking in turquoise waves or snowboarding in Tahoe. I work really hard to get through these feelings in a healthy manner, and am well aware of the signs of depression… according to the zillion heart patient blogs I’ve read, this is super normal. I’m not there yet, but am on the lookout for it.

I know this has been hard on the parents as well. They’ve been pretty amazing, I have to say. I know they’re going through their thoughts. The other night I told my mom flat out that I’m scared of this surgery coming up. We had a good talk about it, and I felt better just for voicing that fear. Dad and I also have our conversations, and the other morning I launched into a monologue about work, and the awesome people I work with, and some silly stories. It was good to have a normal talk. I miss normal. Even when normal was exceptionally stressful and I would say “I NEED A BREAK.” Well, this wasn’t what I had in mind.

I’m still grateful, though, that it was discovered and will be fixed. Eventually. Maybe, at the rate these appointments are being made, I will be that 98 year old patient hobbling down the street. I still insist on laughing, though, and know that all of this will pass over. I will heal, and get back to life. It will be scary, and it will hurt, and it will be a lot of physical therapy and rehab and pain and crying and determination.

Ya, mule, ya!

"Keep Calm and Chive On" - pre-Zipper

Advance Directives and other really difficult things to think about

Have you filled out an Advance Directive yet? This is a short form that tells medical staff who gets to make decisions if something happens to you, and what you what done, and when you want to have it done. I have had one for many years, but haven’t updated it until today. While it was essentially saying the same thing, it was more difficult knowing that I was updating it because of serious surgery. I figure that if someone gets to stop my heart, I get to choose what happens after that.

 

Also, talking with your parents about what you want to have done really sucks. But it’s important to review this document with whoever you choose as your “agent” to clear up any miscommunication or terminology the person may not understand. It’s an emotional conversation, so take your time with it and be ready to answer tough questions. While I take after my mother and am “a tough ol’ broad,” I admit that filling out this form was sectioned away into my clinical brain in order to prevent too much emotion from spilling into my penmanship.

I’ve seen too many patients come in for a routine something-or-other and they didn’t have an Advance Directive. This has led to arguing amongst family members (in addition to the normal arguments) and angst when the patient is aware enough to realize what is going on. I’ve heard patients say, “I just don’t want to do this anymore,” and “can’t they understand this is my decision?” Well, if it’s not on paper, I don’t have anything to present to the family. Document that stuff, people!

It’s super easy to find the form online. Just type in your state and “Advance Directive” to be brought to the form. Fill it out, discuss it with your chosen agent(s), and have it notarized. If you don’t have it double-witnessed or notarized, there’s a chance someone will call it fake and then you’re right back where you started…. And if someone’s pulling your Advance Directive, you’re not in much shape to argue.

Just do it.

 

 

 

 

Low blood pressure and relatively obvious epiphanies

Yesterday I met my new primary care physician, as my previous physician left to get married. I felt sorry for the new guy, as he was walking into what was probably the most bizarre case of his life. Sure enough, this young man walks in and shakes my hand, and essentially didn’t blink anymore for the rest of the visit. He sat and shook his head and laughed with me as we recounted the past several weeks in my medical history, from the “simple-gone-complicated” cyst removal to the funky situation in my cardiovascular system. He complimented me on my sense of humor, told me to come visit him for anything at all, and dubbed me the new VIP of his practice. (I guess being a Super Mutant accounts for something these days, right?) I’m looking forward to having him on my team, since he has a good eye for things and also took the time to review my entire chart before my visit. My. Entire. Medical. History. 

While Mom and I were waiting on the good doctor, I chatted with the nurse who was there to take my vitals and do all the things prior to the physician’s visit. She told me that a close family member recently was diagnosed with cancer and her emotions poured out of her with every word. As many of you know, I recently lost my younger sister to cancer, and so I could feel the pain in her voice. I gave her a hug and told her that it was okay to not be strong all the time – however, as nurses and family members, we tend to be strong for others. That was kind of a wake up call for me… I’ve been strong for many, and have cared for many. This time it’s my turn, and it’s odd for me. It’s hard, and difficult, and a major challenge to sit back and let people come to my bedside. When I was in the hospital a couple of weeks ago, I insisted on walking when I could and was as independent as possible. I want to be as “normal” as I can even when I’m limited to going as far as my 50-foot oxygen line will take me, or as far as this new medication will allow…

 

Roxy and O2D2

 

 

I just started metoprolol, 50mg twice a day, to reduce my heart rate over the next several days to prepare for the specialized heart CT scan I mentioned before. My heart rate has lowered some, but my blood pressure is also dropping, leading to a bizarre dreamlike state. I’m drinking fluids and eating salty foods, and am monitoring blood pressure and heart rate several times a day. This will be another tip in the books for my patients when I return to work, however it will be from experience, not just from a textbook: “Please, be really careful when you get up while you’re on this medication. No going boom.” 

I intend to keep my sense of humor through this, as my Grandmother mentioned to me in a Facebook post. While it’s going to hurt to laugh, I want to laugh as much as possible. I still don’t have a date set for this thing, but will update friends and family when that little tidbit is solidified in stone. I continue to research, and am currently purchasing some items (yay, Amazon!) that may come in handy during and after my next hospitalization. I’m continuously grateful for that clinical side of me that allows for some flat-emotioned knowledge since yes, this is terrifying. I know my family and friends are worried, but like I told my doc yesterday, “I’m stubborn.” I’ll keep working on my Master’s degree until the day I go into the hospital, and will pick it back up as soon as I can sit up enough to type on a keyboard – if the nurses and physical therapy staff don’t completely wear me into the ground first. J 

My next post will include photos of gifts, flowers, and visitors as a “thank you” to the most generous and kind people I know. Love all of you.

#SuperMutantNurse

It was January 7th when I was informed I would need open heart surgery.

I went into the hospital emergently in late December with a left renal infarct. Essentially, my kidney had a heart attack. I can't describe the pain, and my parents had to call 911 to have it all handled. I'm grateful I was with them. And for 16mg of morphine IV. That led to a two week hospital stay.

[Backstory: I was staying with my folks after a routine cyst removal on an ovary the week before.]

Tests were plentiful, however several of them didn't work out.

[Second backstory: I had gone into the ER on Christmas because I felt as if a blood clot was developing in my left leg. I have a history of these (also called DVT) and wanted to be sure there wasn't another one. I had a CT scan done however it was ineffective due to "weird" vessel formation and the contrast was gone by the time they needed to scan me. The ultrasound on my leg was negative so I went home.]

On my admission for the kidney deal, I was given an IV into my left arm, same as they'd done in the emergency room on Christmas. Just before discharge, the hospital doctors switched over and the guy coming in decided he was not okay with my low oxygen levels.

[Third backstory: I've always had low oxygen levels, migraines, etc. and have been told that that's just the way it goes, it's probably due to chronic bronchitis and stress levels.]

This doc orders up a nuclear medicine test which will not only infuse gas into my lungs to see how my ventilation (air supply) is, but will inject a special liquid into my bloodstream to check the perfusion (how great the blood supply is to my lungs). I'm lying there watching the computer screen, and noticing that the perfusion fluid is ... not going to my lungs. The radiology tech grabbed the monitor, said "It's not going where it's supposed to go, I'm seeing things I'm not supposed to see." and before I know it, there's 6 people in the small room with me having a discussion on what the hell is happening with the test. One gal says, "I have seen this once, but it was back in school."

Super. Now what?

The hospital doc blows into my room at about 9 pm that night with a look on his face, and I'm all, "Oh God, this isn't great."

He tells me that evidently I have two superior vena cava (SVC). This is the big vein that take the blood from your head and upper part of the body into your heart so it can go into the lungs and get oxygen. Well, while I have one SVC that is where it's supposed to be and is doing what it's supposed to do, I also have a second SVC that goes smack into the left atrium of the heart. Do not collect $200, just mess with me and go straight to jail. I also have two pulmonary vessels instead of four, however that is not as crucial.

[Physiology lesson: The left atrium of the heart contains the oxygenated blood that goes down into the left ventricle and is pumped out into your body. Because I have deoxygenated blood going into that left atrium, it mixes with the oxygenated blood and therefore, bam... low oxygen levels.]

So, of course, I'm like, "I'm a mutant."

Also, "Holy %$&@ that explains a whole hell of a lot."

So I met the next day with two cardiothoracic surgeons and a whole lot of other people. It was determined that I have a very high risk for stroke, especially since I've already had two or three clotting issues. I was put on Eliquis, a medication that reduces the risk of stroke and other blood clot problems. On top of that, I received injections into my belly. I was already on oxygen, however was told I'd need to be on oxygen at home and wouldn't be able to drive or work for quite some time.

Those of you who know me know that I'm also a full time Master's student as well as the President of a nursing association. Yeah. This was hard to take. I went from 100 miles an hour to zero within the space of a couple of days. So grateful for understanding Board members and leadership within my hospital.

So, as of now, I'm waiting to reschedule a special CT scan of my heart since my exam didn't go well yesterday. They have to reduce my heart rate in order to get a really good look at the system and my heart refused to go below 70 (it has to go, and stay, below 60). I have a cardiac team of probably about twelve people at this point including a pediatric surgeon since this is a congenital abnormality normally caught in infancy.

I will be updating here frequently. While I am an RN, I am not a cardiac RN. Hospice and oncology are my specialties and I have a learning curve, too. I appreciate my family and friends who continue to support me through phone calls, cards, gifts, visits, and text messages. I can't thank you enough for helping me get through this. The hardest times are at night when it's just me and reruns of CSI on television. I find myself researching and reading and looking at photos of other women who have had open heart surgery. I find myself making lists in my head of things that I will need for whenever this surgery may be.

Thank you for reading.



Mom was with me 24/7