Okay, so I’ve been in the hospital now since Wednesday, I think. I feel like I’ve been here forever. I think about people like my good friend and Ninja Warrior Writer Rissa Watkins, who had to spend over a month in the hospital for cancer treatment, and I wonder how folks handle it. I’m going absolutely stir crazy. The last time I was in the hospital, back in September, I was in for 6 days. But I felt so lousy then, I mostly slept, ate, slept, moaned and whined, and slept. But this time, I’m not feeling as bad… I’m sicker in one respect but feeling better in another, so I’m stir crazy. All they will let me do is sit in bed and watch TV. Well, I never watch TV at home… at least I have the computer, which is an absolute life saver for my sanity.
Plus, having the computer keeps me connected to you all… which, in case none of you know, means everything to me. I mean, literally, everything. Reading your comments here and on Facebook and on the forum actually make me feel better emotionally and brighten my day. You guys have no idea how much it means. Also, being able to hear stories from you guys of yourself or people you know who have tried the things I’ve got coming up helps too. I’ve been reassured that the Versed and Fentanyl sedation for the procedure I’m going to have on Monday will be super easy for me and I won’t remember a thing. Yay!
QUICK MEDICAL UPDATE – (yeah, right, like I can write anything ‘quick’)
So here’s the rundown:
INFECTION: The infections, cellulitis, in my legs that you guys might or might not have seen on Facebook turned out, fortunately, to be just simple staph infections. This is good news, because it means the antibiotics they chose to start with should work no problem, and we are already seeing some improvement–drastic improvement, really, but the edema is still pretty bad, which means I’m still in some pain. the wound that was a blood blister that several said looked like a gunshot has almost completely healed over now. It’s dry and itchy, but that’s a sign of healing, so we’re all good. You can see the before and after in the pic over there.
LUNGS: Well, the ventilation perfusion test was repeated. They did the test a month ago when I was here at the end of September, and they redid it two days ago. This is the test where they make me radioactive and I got that cool sticker that said I might set off alarms as a terrorist at the airport or something. The whole procedure is pretty interesting. First, you breathe in radioactive gas and then they scan you with a gamma camera that takes pictures of how the gas perfuses through your lungs. Then they inject you with this weird stuff that makes you radioactive too, and they see how much it goes through the body… well, this will show if there are embolisms — or is it emboli? The style guides are at home and I’m too lazy to look it up — anyway, the goal this time was to see two things 1) how much improvement was there from the last time and 2) were there new embolisms since I’ve been on anticoagulation treatment?
The answers? Yes, there was improvement but not as much as they wanted there to be and yes there were new embolisms. For those who are curious about what the acute problems I’m dealing with are, the part they are most worried about is this: Massive Multiple Bilateral Pulmonary Embolisms.
Here’s the scary part: these often kill people. When the doctor saw the scan, he was amazed I had not sounded worse, looked worse, and in fact, was actually still alive. So when I started throwing new clots even though I’m on blood thinners, he was pretty adamant about putting me back in the hospital. Sure enough, it was a good thing he did. I tell you, so many times I’ve had things that should have killed me… it’s a sobering but grateful acknowledgement. I’m very happy to be alive.
HEART: We asked if they were going to repeat the echocardiogram t see if the new clots had caused any additional problems with the heart. We don’t know yet if they will repeat it or not. The thought is that even though the clots are big enough to hit the lungs hard, with the blood thinners, they were probably small enough they didn’t do any further damage to the heart. I’ll update more when I know more about the heart, but my heart rate is still quite high when I get up and move around. Sitting in bed, though, it’s getting lower, even went into the 80s today, which is really good!
KIDNEYS: They are monitoring my kidneys very closely, because I’ve had some flank pain and both the Vancomycin and the IV Lasix flush through the kidneys. There was a little blood in my urine at one point, so let’s hope the kidneys hold out so they can finish making me better!
BACK: Of course, being in bed all this time and not being able to DO anything or even really move other than to go pee, the scoliosis and degenerative disc problems are causing my back to ache. Fortunately, we FINALLY managed to get a doc to listen to me about my at-home meds, and I have pain pills and muscle relaxers now too. Yay! That makes such a huge, huge difference in my comfort level this time compared to last time. Remember, last time I didn’t update or post much? Well, I felt so bad and was in so much pain I couldn’t even think. This time is much, much better.
So in general, I’m doing okay. I’m not out of the woods yet. My coumadin levels are still low. I should be at a 2.5 minimum, and they took me off the coumadin the day I came in, so I went two days without it. My levels dropped to 1.7 and then 1.3, and now they have me on 10 of coumadin in the evening, but they are also giving me two Lovenox injections twice per day. Let me tell you something, the Lovenox burns! the needle doesn’t bother me, but boy that stinging burn is not fun! To make matters worse, the shots go in my belly, and then my poor belly bruises so badly the entire thing is turning a deep, dark shade of purple, and I bleed for a long time afterward. My gown got blood stains on it (pout) and it’s one of my favorites. I’m pretty good at getting stains out though, so it should be fine.
WHAT’S THE GAME PLAN?
On Monday, they plan to sedate me with Fentanyl and Versed – one of them helps with pain and makes you sleepy and the other makes you sleep and amnestic, meaning, you won’t remember what happened. They then plan to insert a PICC line and then insert an IVC Filter. This filter is a tiny wire mesh filter that the doctor says is like the Chinese finger torture toys kids play with. IVC stands for inferior vena cava – and that’s a certain vein that is the main vein that blood travels through to get to the heart and lungs. The filter’s job is then to stop any DVTs/Blood clots that form below the abdomen and block them and hold them in place while the blood thinners diffuse them. When they are small enough to pass through the filter, they are no longer a threat to me. This is supposed to prevent me from dying a ‘sudden death’ due to a loose blood clot.
After that, we’ll know more. I’m for sure here until Tuesday, probably Wednesday at the very earliest, but I’m really putting a lot of energy into them letting me go home early next week. As long as everything goes well with the PICC and filter, there’s no reason I shouldn’t be able to go home and finish treatment from the comfort of my own bed with my own television and stuff and not have to be here where they wake me up every two hours whether I need it or not.
I ordered a mai tai when I first got here, and they have yet to bring it to me. I asked for a room with an ocean view (the ocean is right outside the window, but unfortunately, my window is angled so that to see the ocean, you have to sit on the ledge and lean over really far and then look past the wing of the building. But I do have a great view of the wall next to my window. It’s a pretty wall, as far as walls go, I guess. They change the sheets every day and give me fresh towels (yes, I get to take showers this time, yay!) and the food is decent, not great, but tolerable and a few things have been all right. I love the little juice cups. I’m a juice nut, so having unlimited juices is nice for me! There’s a Seattle’s Best coffee kiosk in the lobby area that opens at 5am, so I’ve had pumpkin pie latte and caramel latte so far. They are closed on the weekends though – what’s up with that? This hospital is so weird in that they close all sorts of stuff down on the weekends. For example, they can’t do certain procedures on weekends, like the PICC line or inserting a filter, unless it’s an emergency. Back home, one of the reasons you go to the hospital is BECAUSE they can do things on the weekends when other things are closed. Shrug. Just seems strange to me.
They are doing construction here too, still recovering after Hurricane Ike. They are finally getting their money in and are doing some awesome things to the hospital right now. Unfortunately, they are doing some of them right outside my 7th floor window. We had jackhammers the other day. Lovely! Fortunately, construction is another thing they don’t do on the weekends, so yesterday was more peaceful.
There’s a guy next door who is older, sick and doesn’t know where he is. He isn’t doing well, physically or mentally, so there’s been a lot of noise from him. What he does is takes his legs out of the bed and dangles them over the side then starts screaming, “Help! Help! Help! Help! Help!” over and over again. Then the nurse will come and say, “Joey, put your feet back in bed…” and he will laugh and scream, “Fuck you… get out of here…” and then he’ll put his feet back in bed. Then, about 10 minutes later, “Help! Help! Help! Help!” it’s crazy. Yesterday, he found the volume control to the television, and I got to listen to Mighty Mouse in between bouts of, “Help! Help!” He also tends to call to anyone who walks past the door, whether they work here or not. We overhear the nurse all the time saying, “You’re in the hospital, Joey… do you remember?” and of course, he doesn’t. He’s rude though, cussing at the nurses, making rude gestures, and reaching his hand down his pants type of stuff. Yesterday, he was throwing things in his room and we could hear it hitting the wall. Gotta love hospitals!
So… when the nurses walk in and ask, “Why aren’t you asleep?” you tell them, “Uhm, because you won’t quit coming in my room!” Turns out they are required by their policy to visit the room once per hour, whether we need it or not. Most nurses don’t wake us though. Good nursey!
So after a rough day, when I was trying to decide what to do about the filter and the PICC and stuff, I told Lynn I was a wimp. I said, “Man, can you imagine if something really serious were to happen to me?” She died laughing… I’m thinking this IS pretty serious, eh?
The transportation people at the hospital are the ones who take you from the room to have procedures or tests done, and they are usually young, mostly uneducated or students, or a few who don’t speak great English. But one of the little guys who was taking me the other day decided to race Lynn down the hallway. She got to running behind him. It was hilarious, but dammit, the woman kept up with the young’un!
Speaking of Lynn, I can’t tell you all how wonderful it is to have a friend like this woman. If I could give a special gift to each and every one of you, it would be that you have at least one person in your life as amazing as she is to me. She never complains. She steps back when others step forward and she steps forward when I need her. She is kind, calm, compassionate, a good advocate… she keeps up with things for me so I can focus on other things. She has stayed here with me the entire time, hasn’t left my side once unless it was to go get me something I wanted. She’s made sure my every need is taken care of, and she’s even kept track of my fluid intake and output – the means, she’s been measuring my urine. It’s truly friendship and love when someone is willing to measure your pee!
I know she’s exhausted… but she’s not complained once. Not even once. It’s not like she HAS to be here. No one, myself included, would blame her for going home, or going to work or even just needing to get out for a little while and take a break, but she’s ever vigil. She’s sleeping in the chair by the bed, which is kind of a nice chair – I’ll have to get a picture of it. They have cots too, but the chair is actually more comfortable from the looks of things. The room is tight in here with all our stuff, but it’s not super tiny and at least it IS a private room. I would not, absolutely NOT be able to handle a shared room right now. No f’ing way.
So anyway… I just really needed to give her kudos because she’s amazing. I am so blessed to have so many people who love me so much, and while I know I don’t deserve it, I’m so grateful for it. So very, very grateful. Ever since I was a little girl, I’ve wanted a best friend like you read and hear about in books and TV… I finally have one! Thank you, universe! But more importantly, thank you so very much, Lynn. I love you, Buffy!
NANO NO GO
So how’s NaNo going for everyone? It looks like this will be the first year since I started NaNo that I won’t finish it. (pout)… I think I have a good excuse though… whattaya think?
Anything else? Ask questions if ya want.. a few of you were emailing me, so thanks. I got some awesome ecards and some gorgeous flowers from Jennifer Wright, Diane Y and Elizabeth Grace. They are simply gorgeous. Diane’s roses are HUGE white roses that are the most fragrant roses I’ve ever smelled. When people walk in the room, they comment on the scent, that’s how strong they smell. They are divine. I can’t wait to use my smiley mug – it was a mug I really, really wanted, and what means more to me about this mug/flower combo from Jennifer Wright and her family is that she actually saw that on my Facebook feed and remembered! How sweet is that? And Elizabeth Grace’s arrangement is quite unique… you’d have to see it in person to do it justice: first, it’s sort of exotic, which I love, but more than that, it’s like it’s three different arrangements in one. When you turn it, each side of it, which is sort of triangular, has a different ‘style’ to it, but then, the three styles all work together to make a cohesive bouquet. It’s hard to explain right, but it’s really quite unique and I love it! Then Diane got me balloons too, a round mylar and a big butterfly!
I need to name the butterfly and the mug smiley. I love the smiley too, ’cause it makes me think of the forum, where we have the best smilies on the internet!
Thanks for the love, the friendship, the prayers, the positive energy, the Reiki, the comments, the encouragement and more. You guys sustain me in ways you can’t even imagine.
I love you all! Keep reading and I’ll try to keep writing….
Love and stuff,