Why, hello there!

It's been a long time since I've actually blogged and I keep telling myself that I need to get better at this.

I think the last thing I posted was a video from the hospital after a seven week stay. That was the longest, most difficult hospital stay I have ever had. Considering that I grew up in a hospital, that says a lot. At that time, I was working my way back to getting back on the transplant list. That never happened. In fact, Stanford decided against giving me a transplant all together.

I'm still being seen in their clinic for the time being, but I have taken my case to UCSF and am currently doing some required testing and hopefully they will soon present my case. I am a tricky transplant, and I'm not even sure that UCSF has ever done a double lung/liver transplant before. Whether or not they have ever done one before makes no matter to me. Someone has to be first, and I don't mind that at all. The two surgical teams are top notch at what they do. They will have to carefully choreograph the exchanging of teams in one operating room, and it will be a tricky dance. I hope they are ready to Tango, because I know I am.

Even though I am in this REALLY shitty situation, as I have been my entire life, I still feel blessed. Not everyone in life gets to have the insight that I do. Some never have it. That makes me sad. I think about all of the choices I've made (the good and the bad), all of the situations I've been in, and all of the people I have known in my life and how it has all led me to this place, at this time.

Sure, there are things that I wish I had or hadn't done, and things that I would do differently. We all have those moments. I am thankful that mine have led me to the place that I am at, the people I know, and the person I am with.

I have been forced to face my mortality head on. I have been forced to accept that my time here is possibly coming to an end. I cannot possibly describe to you what it is like to have to come to terms with your own death. I am planning for two outcomes: living and finally being able to breathe again for the first time in decades, or dying, and making all of my funereal arrangements ahead of time in order to lessen the burden on my loved ones.

Speaking of arrangements, I plan to be cremated, so I contacted the Neptune Society to get an info packet. Oddly enough, they actually called me on my cell phone to follow up. They were asking me things as though I were planning a loved ones death. When I mentioned that the planning was for my own departure, her tone quickly changed. She was very polite, almost saddened, and told me that if I had any questions to please feel free to call. I think that most people don't really know how to react to someone like me. They don't expect someone my age thinking of such morbid things.

For the first time in my life, I've had to seriously consider what would happen if I die. I've had other scares in the past, but I was young and more tenacious. Oddly enough, it's a liberating feeling when you finally decide that you are okay with dying. You finally have clarity about what has to be done and can stop your mind from being clouded by emotion. Granted, you have to work through emotion to get there, but once it's out of the way, things become so clear. I feel like I have focus on what has to be done, and I will be okay with what ever outcome there is.

Anyhow, life here has had some pretty big changes. Mostly the whole switching hospitals thing. And we got a dog. She's a four month old Maltipoo named Luna. She's pretty much doubled in size since we got her in January, so she's up to about 8 pounds (about 3.5 kilos). I call her my little gordita. :)

She has been a TREMENDOUS boon to both mine and Mark's psychological well being. She's a typical puppy, super naughty, bites and chews everything, sometimes poops or pees in the wrong places, and barks, yelps and whines whenever she's left alone, but she is so much love. She brings such joy and meaning to my days. My depression has been greatly alleviated just by having her around. I'm still medicated, of course, but she has had an amazing effect on both Mark and I. Best decision I've made in years.

So, I know that I should probably go to the hospital soon. My chest is tight and breathing has become extremely exhausting. I don't feel sick, just full of crap. I have been avoiding the doctors for some while now. I'm just sick of it at the moment. With all the crap that I went through and am going through, I just get so tired of tests and doctor appts and filling prescriptions and blah blah blah... My job is very tedious and I NEVER get a day off.

I have to wake up at a certain time every day in order to take my meds and do my breathing treatments. I never get to sleep in or be lazy. I can't skip treatments like I used to because I actually CANNOT breathe without them. I set an alarm for four hours after I go to sleep in order to wake up, take 3 enzymes, slam an Ensure and fall back asleep. Sometimes I can fall back to sleep, sometimes I can't.

All I'm saying is that it just gets old. I do all of this just to keep taking another breath. There is no longer any time for me to do much else other than my health maintenance. My life is very sedentary at the moment. I walk when I can, to get some exercise. I play with Luna. I do puzzles and sometimes do mosaics and crochet. Sometimes I try to bake or cook something, but even that is rare these days.

So, this is my life. Sitting here in Limbo, so to speak. Mark and I are doing well. We try to go on little adventures on the weekends, just to get out of the house and get some sun. The weather is starting to get really nice here, so it's fun to go outside and watch Luna romp around in the grass. We are hoping to introduce her to the ocean soon. Watching her play is almost magical. It's hard not to smile or laugh when you see her.

Sorry if this post has been somewhat depressing. I'm not really meaning it that way. Love to you all. <3

~E




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Today I am having one of those "I hate life" days. I just can't get over the lack of energy I have to do ANYTHING most days. I don't feel like the Remeron I'm on is really doing anything for my depression. It seems like all it does is give me the shakes and makes me a zombie in the morning.

I can't get over how bad I physically feel after seven weeks in the hospital. The embolization really fucked me up. It seriously feels like my lungs are glued to my ribcage. I can feel them twitch and pop everytime I move a certain way or breathe a certain way. It really disgusts me sometimes. When I lay down at night and listen to my breathing and I can't make the "snap, crackle, and pop" go away. Drives me nuts.

Life really has gone to shit and it's hard for me to focus on the good things I have when the shitty things are SO in my face. Even though I'm at home, I still can't sleep through the night. I have to set an alarm and wake myself up so that I can drink a supplement and try to gain weight in my sleep. It's really getting ridiculous.

I'm Debbie Downer tonight, but I've been trying to be positive for so long, I think I deserve to be a little negative once in a while and share my feelings on how this shit REALLY blows. I mean, REALLY REALLY BLOWS. People tell me that I'm strong and courageous, but honestly, I don't feel that way. ANYONE would be doing this if it were handed to them, and many, many people have. I don't feel that this is any different that what all my other Cfers have gone through.

It looks horrible on paper. TRIPLE ORGAN TRANSPLANT. Triple. As if the double-lung wasn't scary enough. I think my liver just felt left out or something. Apparently my kidneys were just dying to join the party as well.

I went to Cf clinic yesterday. My lung function is at 24%, which is right around my baseline of 25%, so that's good. No word back yet on what my Createnine level was from the bloodwork, I'll call tomorrow and find out. They weren't too thrilled to learn that I had lost weight since leaving the hospital, but I expected that to happen as well. At least it appears that my nighttime feedings are paying off. I dropped to 105lbs, held steady there for a few days and then started climbing upward again yesterday, so we'll see how this goes.

I wish I could figure out why I'm having such a shitty mood day today. Nothing special about today aside from any other day. I don't like being this way. I lash out at people that I love when I'm like this, and I can't afford to do that. I have a shortage of people here.

I think I just hate being so immobilized and trapped here. I'm trapped in my own body and there are so many things that I used to want to do, but now I look at them with heavy eyes. EVERYTHING is a complete task. Showering, eating, putting clothes on, sitting down, getting up, getting out of bed, getting IN to bed... It literally takes me about five minutes to catch my breath after getting into bed and getting into a somewhat laying down position.

I'm just hating life right now and I'm tired of fighting. I wish there were some sort of respite, but there is nothing in the near future. I'm afraid this is an uphill battle for quite a while. I really can't wait until it's all over with. At least the really hard parts.






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