Tuesday, February 9, 2016

Surgical Consult

I met with my cardiothoracic surgeon this morning and am processing things but wanted to get it down here so I wouldn’t forget anything later on. There’s a lot to process.

What I have is called Raghib’s Syndrome and it’s quite rare. I have a variation of this which makes it even rarer in that I do not seem to have the atrial-septal defect usually seen in the syndrome. I do not have a coronary sinus (no worries, I don’t feel like less of a woman without a coronary sinus.)
Because I don’t seem to have the atrial-septal defect… I may not need open heart surgery, after all.  

My doc consulted with another surgeon and it seems as if I may have a narrow vessel which can take on the additional load of blood flow if they simply block off the extra superior vena cava on the left side. I may have some residual swelling on my left side due to the blood trying to work its way through a new pathway, but my body should adjust to this and even develop new vessels to help.  

The next step for me is an echocardiogram followed by a cardiac catheterization, in which they thread a tube into a large vein (probably my groin) and up to the heart. They want to test the pressures in the vessels and see if there’s anything keeping them from doing the less invasive procedure. They can also inject dye through the tubing to see detail of the vessels. The surgeon will call my cardiologist and an interventional cardiologist (doc who does the cath) in order to fill them in and have me scheduled. The catheterization will be an outpatient procedure, and if they use a vessel in my groin instead of my neck, I’ll have to lay flat for about six hours.  

After those tests are run, then it’s back to the surgeon’s office to see what’s next. Until then, I just keep doing what I’m doing. I’ve attached a video of the surgeon’s explanation of my weird vasculature for your enjoyment.

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Saturday, February 6, 2016

It's going to get heavy for a second, folks.

As I’ve been going through the process of hospitalizations, tests, being out of work involuntarily, and having plastic tubing up my nose all day long, I’ve noticed a few things. I’ve been told several times that people don’t want to tell me things because I’m going through a lot myself and they don’t want to put any more stress on me. I gently remind them that my heart vessels are what are messed up, not my ears. I’ve always been someone who invites people to talk with me and get things off their chest. It’s never caused me undue stress and I’m honored to keep so many secrets for the people I care about.

With this clearly on my mind then (and now), I have invited friends, family, and even strangers to ask me anything… anything at all. You see, I’m not the only one undergoing a life-changing experience. Whenever something major happens to someone in your life, you are unwittingly, inadvertently, and sometimes unconsciously affected. I think of my parents, family members, loved ones, and friends who are going through their own thought processes much as I am. I didn’t expect the questions to come rolling in, but I was expecting the following from an RN colleague:

“As a nurse, does the fear of knowing everything that could possibly go wrong create anxiety or other emotions for you?

Christy, thank you for the question. I don’t know if I’m “normal” in the sense that I feel some of the anxiety alleviated by my somewhat limited knowledge of cardiac surgery, but I’m incredibly thankful for the knowledge I do have of hospitalizations, recovery, medications, infection risks, etc. I’m also grateful for knowing the physiology and anatomy of the heart, because when it was explained to me that I have the extra SVC which drains into the left atrium, it’s like everything made perfect sense in about three seconds.

With that being said, I did reach out to a friend who works in cardiac rehab as well as cardiac units, and she drafted an excellent and rather long, scary description of what to expect. (Thank you, Anna.) The first few weeks I was anxious, scared, and my mind would not stop working overtime. I researched and researched, reading stories, blogs, and medical websites. I did research online through medical and cardiology journals exploring potential cases of patients with what I have… and I only found two, one of which was similar but not totally identical. With the results of my recent CT angiogram, I have a bit of extra anxiety over the formation of my one left pulmonary vein (vessel which drains oxygenated blood from my left lung into my heart – usually people have two left veins) but will be addressing that as well with the surgeon this coming week.

I know of many things that could go wrong, but that doesn’t add to the anxiety for me. Every surgery has its risks, and open heart surgery probably has some of the most dangerous risks. I know that I will be under the best care with my cardiac and surgical team as well as my nurses, staff, and other team members including my primary physician and hospitalist. All I have to do is remember that it will hurt, but it won’t hurt forever and I just have to deal with it the best I can. Honestly, the thing I’m worried about the most is waking up on a ventilator.  

My emotions are all over the place. I go through sadness, anxiety, hope, happiness, loneliness, irritability, anger, etc. The past couple of days have been relatively good since I got the angiogram out of the way. I’m sure that I will be going through emotion switches all the way down the road, and that’s okay. Lately I haven’t been sleeping very well, but I can handle that.

 I try to get out every day for a mini-walk and to feel the sun on my face. I try to have nutritious foods through the day and drink plenty of water, but don’t beat myself up for enjoying the bad things once in a while like a chocolate milkshake. I’ve become used to the whirring sound from the oxygen concentrator and it’s like white noise to me, now. Right now I’m in the middle of a House marathon on the television and will get back to working on another paper for my class when I’m done with this blog entry. As normal as possible is what I’m shooting for.

Thank you for reading.

Rainbow outside my hospital room window the day I was told I was a mutant.

Wednesday, February 3, 2016

Jelly Beans and the Weird Side Effect of Contrast

So no matter how many times I have a CT scan with contrast, I still worry that it’s not just that I feel like I have peed myself, but that I actually have (I hate you, contrast.) I don’t know if any of you have had this experience, but it’s a little startling and you’re all, “OMG, I’m going to electrocute myself and the nurses and all the staff within forty feet of me and what a mess that will be.” Nope, just the stupid contrast making its way down to the well-vascularized areas. Super.  

With that being said, I’m happy to tell you that I passed my CT. My heart rate behaved itself and I didn’t even need the intravenous metoprolol to go along with my 150mg of pills. I loaded up on Benadryl for my contrast sensitivity and was just fine. By the time I got on the scan table, it felt like it was time to come off again. So, yay! Seems like so little time for that ENORMOUS 18 GAUGE IV NEEDLE!!! (See below. I teased that she had a choice between "water main" and "meh" and she wanted to provide me with absolutely every patient experience.)


The official scan shows, of course, that I have that silly superior vena cava going smack into my left atrium, and also have just one pulmonary vein on the left side (instead of the normal two) which is shaped oddly. I don’t know if there will need to be any sort of alteration for that. But, I have an appointment with the surgeon next week and hopefully we’ll really start moving forward on this. Because waiting sucks.  

The days go on. I still work on my Masters degree, play with the cats, drag around my portable oxygen, and enjoyed Del Taco french fries today. I don’t know what they do to those potatoes, it can’t be good for you, but I’ve been craving them for four days. I know they’ll have me on that CARDIAC DIET before I know it, and that involves no salt and limited fat and essentially not a whole lot of fun.  

Speaking of fun, let me introduce you to some of Jelly Belly’s new flavors. No, I have not opened this box yet. I’m afraid to. Canned dog food and lawn clippings, along with barf flavor and moldy cheese. My sweet friend, !!! CHRISTINE !!! visited yesterday and brought these along with other beautifully corny items. I think she’s sweet, and not trying to kill me. I guess time will tell, or I’ll go in there when I’m really needing sugar. I’ll let you know what happens, but if you don’t hear from me for awhile, it’s probably the stinky socks flavor (not kidding.) 

Also in the gift basket was a meditation elephant, teas, chocolates, a duck that quacks when you blow into its hind end (I can't make this up, people), a card regarding things you don't want to hear in the operating room, strawberry jelly, hard cider, a scrub brush for my back, adult beverage napkins, and lovely scented soap. I have discovered that my friends know me better than I do.

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Friday, January 29, 2016

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.]


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