Monday, September 20, 2010

"She's got the Jimmy legs"

Before I forget again... I've been wanting to ask, anybody out there on anti-rejection meds that has the "Jimmy Legs"? ...I am assuming that it is the meds, because since I have been out of the hospital I have kicked my poor cat twice now. (He does get very offended by this. When I jump out of bed to find him after, he turns his back to me for a minute or two, completely ignoring me, until I have apologized enough in kitty massages) I have also kicked my husband a few times... (ahhhh, no apologies there, he looks up confused and I just pretend I'm still sleeping. muwahahaha)

I've also got a mild case of the "Jimmy Arms". Yes -- they do have that too... but luckily for my husband, so far all I have done is wake up with my arm (or arms) outstretched, still reaching for something from my dreams. Speaking of my dreams... they have also been VERY strange and strangely vivid. Mostly high anxiety type dreams, usually consisting of me running, hiding, fighting, or very late to something... but maybe it is just me, not the meds so much... anybody?

Ok, I better get back to bed. I've got another MAG-nificient Monday tomorrow... errrr, today.

Wednesday, September 15, 2010

Blaaah Biopsy!

Yesterday was not only my second biopsy since my transplant, but it was the first time I have thrown up since the morning of my transplant. (Darn, back to day 1) It was definitely nerves plus the meds, less food in my tummy... They had gotten me prepared for the biopsy -- neck scrubbed down, towels placed around the spot, large sterile blanket placed over my entire body, with a hole on the neck area taped down... and then, blaaaaaaaaaaaah! All over the side of the bed. With me apologizing in between. After a few minutes of that, and some stuff for my tummy, I was ready for them to start all over again. Another 10 minutes (and about 20 more apologies) and it was time to give me the good drugs. hehee. I actually stayed awake during this one. The worst part of it was the shots of numbing medication to the neck, other then that, a little pressure and some strange movement in my chest was all I felt.
The results on the other hand... not as good. According to my docs. the Hepatitis C is beginning to affect Sally. I had been hoping for something a little less permanent, but I knew eventually the HCV would return. It is hard to take in, that possibly within the next few years I will need yet another transplant... If I am given that chance at all. I pray for Gods will to be done, but it scares me to think that Gods will may not include me being on this earth for many more years. I do know though, that the time my new liver has added is completely worth it, and a miracle in itself. My son will forever remember me and how much I love him. --I am definitely not saying my time here will be less then everyone else though, I can go another 5, 10, or 30 years with this new liver.There are also new treatments like I have said, though it may include the combination Pegalated Interferon and Ribaviran, it adds boceprevir, which can increase the "cure" rate from 30something % to over 70% for my genotype, and for that jump in percentage I am willing to go through the nausea, vomiting, headaches, hair loss, and fatigue again. But there are more treatments in trials, like INX-189, which may have less side-effects.Hopefully one of these will be a possibility for me soon, but for now, we will take it one day at a time and try to enjoy each moment given to us. :)

Monday, September 13, 2010

2 months down...50 years to go!

Well, I was hoping to be writing this anniversary post from my ETC room while eating my tacos and getting my Mag drip... but as it turns out instead, it will be a mag-nificent Tuesday...  though, it will include a not so fun biopsy, boooooooo.  My enzymes are still climbing, so they are going to do the biopsy as well as check the bile ducts for blockage, at which point they will put in a drain (if there is a blockage) So that is that... I do hope that they get my magnesium under control soon. I am starting to look like a scared Chihuahua... except, since my transplant, I have incorporated a new diet rule... Always order dessert, you never know when it might be your last day in here! (the hospital, that is... although I guess you could apply it to life in general, but then I'd be really chunky) Which I actually better stop anyways, because I have been in the hospital more days then not lately. :)

On a different subject... I am becoming increasingly concerned about my sons womanizing ways. hehehe... You may have heard a few weeks back, when we went to the store to buy our bikes (I'll tell it again just in case) There happened to be a young girl (about 8 or 9) He started following her around the store... around and around and around - it was a small store... I'm not sure if he asked her name or if he just wanted to change it, but he announced that he shall call her "Flower" he then told her... and everyone else in the store that he came across, that she was pretty. Somehow, the lil' guy won her heart because before she left with her dad, she gave him a bead off of her charm bracelet... which he slept with that night (and to this day it sits on his dresser) I did later find out that he also calls my little sisters friend Flower (Sorry Susan, I guess it is just easier to call you all by the same name) but it doesn't end there... this last week we went out to dinner, and a couple with their young daughter sat down at the booth next to us. My son whispered to me "Can I sing a song to her" and pointed at the little girl. I told him that he could after he finished all of his dinner (which I figured, like usual, he would NOT do - I know, I am mean) However, on this night he must have been really hungry, or he just really wanted to get her attention, because he finished that meal! I apologized to them as soon as he stood up and got ready... saying, I bet you weren't expecting dinner AND a show. hahaha (nervous laugh). He then proceeded to sing "Another one bites the dust" while doing the robot and some break dance moves, until I finally told him that he needed to sit down. They didn't seem to be upset about this serenade, and it definitely got their daughters attention... but like I said, I am becoming very concerned. tehehehe

Wednesday, September 8, 2010

The Young, The Old, and The Sickies!

Now, don't take this personal... but I am going to reiterate this one more time. IF you are sick with a cold or flu, or have been in the last few weeks, (heck, I don't care if you just think you have allergies) show me the same consideration as you would a newborn babe... and stay away from me! This is a new found phobia for me, but with great reason! I must admit, though it may be the steroids talking, I have very little tolerance for people who do not show great concern for this -- and will make it known. 
A few weeks back, a patient in my transplant clinic came in (wearing a mask) with a woman sniffling and coughing like crazy, she however, was not wearing a mask. This bothered me... greatly. Never mind the huge signs next to a station of hand sanitizer and masks for your convenience that says "COVER YOUR COUGH" (which is actually in all hospitals and just common flippin' curtousy) But she had to have known how easy it is for us transplant patients not to get infections... her husband was wearing a mask for Gods sake. Still she sat down, with us transplant patients watching in terror. (hehehe) and me shaking my head in disgust. (I'm telling you... ROID-RAGE) however, I did nothing but continue to give her the evil eye every time she coughed. That is until she went to the bathroom while her husband went in to see the doctors... she came back and plopped herself right next to me. Her butt had not even hit the chair when I jumped up and grabbed a mask to put on. She at that point got the hint. (I'm guessing) because after at least a half of an hour of being there, and spreading her germs, she got up and got a mask for herself...(I would have loved it if all of us patients would have stood up and cheered) I know, I'm brutal -- and I have never been that way about these things until now.
Now, I know that most people are unaware of how bad certain infections can be to us transplant patients, or that like newborns and elderly our immune systems are so weak... They go around spreading their colds and flues like gumdrops and smiles (don't ask... I don't know where I come up with these things) ... they just don't think about it, know, or maybe even care. But for all my family and friends... (that read this) NOW YOU KNOW!! So remember, because right now, as I type this, it is 3:00 in the morning, and I have just been woken up for the umpteenth time... Why you ask? Because I am in the hospital again, away from my son, costing me money, and exposing me to even more infections. (And that I know because I had left 2 different waiting rooms while waiting for my room today (for 7 hours, but that's a whole other story) due to people coughing, sneezing, and just plain sick looking.) The reason for this hospital stay?? My AST/ALT levels have jumped up this time which could be due to A. rejection, or B. infection... but one of the first things my doctor asked me was. "Have you been around anyone sick" at which point I could have shot myself... or my in-laws. (Just kidding guys. I was very happy to see you, and had a lot of fun) Anywho, not placing any blame here... But they visited us over the holiday weekend from out of town, clearly infected with some bug...  and I'm telling you now again... every single one of you... I love ya's all to pieces, but if you have so much as coughed in the last few weeks, stay away until you are completely better... and if you are at all offended by this... just plain stay away! Ahahahaa. No, really though, even if we don't become deathly ill (which is sadly possible) the slightest infections can cause a rise in our blood work, which sends our doctors and us into panic mode. Even now, knowing that I probably just caught a cold, I am nervous and thinking, what if it's not a cold? Or, what if it is that I am sick, but it is something dangerous for me like CMV or Pneumonia? What if I have to be in here for days or weeks? What do I tell my son?... he worries. And, how long before I get sick of USC's tacos? Which besides their chocolate pudding and apple pie, is the only thing I really like. teheheee. I know... so many things... It's making me sleepy again. (Finally)

Here are a few good pages to read on keeping us patients healthy after transplant... I suggest you read it if you know a transplant patient too (like me) so that you know the do's and don'ts. Some of it is just common sense -- at least for us, but some of it, I hadn't even thought of... Like for us patients that are also parents. Contact your kids school faculty and let them know that you need to be contacted if any communicable diseases are going around. That's a good one.
USC's - Avoiding infection after transplant &
DukeHealth - preventing infection (This one says after lung infection... but I liked it for the examples)

By the way... I googled getting sick after transplant and got over 3million hits... which leads me to believe that this is no laughing matter. Please respect us sickies, and don't take it personal. It's not that we despise you... just what you're carrying. :)

I'm thinking that my next investment is gonna be in one of these bad boys... with a shirt that says "I wear this for my protection... not yours!" ahahaaa.

Thursday, September 2, 2010

You're not better yet??

I think that every single sick person wishes at one point or another that the way they feel could be seen on the outside, whether they have liver disease, cancer, or fybromialgia... it doesn't matter, every sickie experiences AT LEAST one roll of the eyes, sigh, or question that leaves us feeling misunderstood and a bit like a drama queen. Most of my life has consisted of these, and even now after months of collective hospital stays, close calls, and 7 surgeries, I still get the feeling like some people look at me with doubting eyes that say "You're not better yet?"
In all situations, no matter how hard I try, the need to validate myself results in a somewhat defensive explanation of what is going on in my body at that specific moment (which is usually waaaaay to much information) hehee. Even now, less then a month and a half post transplant, I find myself explaining that my new liver isn't even completely grown... my 20something pills have side-effects... my magnesium is constantly low enough to cause seizures... and most recently, that my last procedure to check for Ovarian Cancer has left me with a constant cramping (which I find ironic since I don't even have a uterus to cramp up on me) --Try explaining that one to the naysayers... ahahaa. Either way, I can't win because after explaining myself, I feel like I am just whining anyways. So instead, I find myself pushing myself a little harder then I should, not mentioning when I hurt, and even flat out lying when certain people ask me how I am feeling.
Some of this could be my own insecurities. I am definitely questioning my own healing process... it feels like it is taking way to long, but then I need to remind myself that I could be one of the many that are still in the hospital one month post transplant, or that I would still be waiting had I not had my living donor. (That one gives me chills... had it not been for Nancy, I may not have even been here to write this) So no matter how long it takes, and no matter what others say, I just need to take it one day at a time.
I was told once that when you're sick you get about 2 weeks of attention (I'm adding understanding and patience) by others after surgery/sickness, and I completely agree. Though I understand that our care takers and others close to us become frustrated and burnt out... just remember, we feel the same... only every second of the day. There is no escape for us, and add that to the frustration of being in constant pain or not knowing when the pain is going to begin or end... We are likely to be a little short fused.
The only advise that I can give to those that deal with us sickies is to remember things like "The Spoon Theory" and I know I have mentioned things not to say to a sick person... but I found this little thing on what you maybe should say. (Notice how they don't ask if we want any help... they just ask when)

--10 things to say to a sick friend

And for us sick ones... give others the benefit of  doubt. Most people are trying to help, no matter how they approach it. Just because we are sick, doesn't give us the right to treat people meanly... remember that our true selves only come out under extreme pressure, everything else is what we paint for others. In other words, everyone can be a great person on vacation when times are good... but it is what we do in times of trial that show who we really are.