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An Open Letter to My Dying Lungs

Dear Lungs ~

I am SO sorry for what you are going through. You have worked SO hard and SO long to get to where you are, and I hate that you are suffering now. To be honest, I can't believe we've made it this far together.

You have been my constant worry since you first started having problems. Back in the "good 'ol days" it was easier to bounce back into action after a setback, but as the two of us have aged, things are a bit more complicated than they used to be. To know that you are in constant pain and that every day is a challenge really hurts me to my core. I just want you to know one thing though: I will be with you every step of the way.

We have had many, many years of wonderful experiences, like when we used to play volleyball and basketball, or when we would go for super long bike rides around Sioux Falls as kids. Swimming at the Y or those hot summer days when we went to the local pool. Or even those days when we would take a run just after a rain shower, just to smell the freshly rinsed world around us.

Let us not forget the beautiful sounds you used to help me make when we could sing, and the people who's lives you've touched by doing so. We were able to comfort the ones we love when they needed it and that is something you cannot put a price on.

Now, I know that I haven't always been a good friend, and for that I am deeply sorry. There were times when I was completely selfish and intentionally put you in harm's way just to follow my own agenda. There were times when I didn't hold up my end of the deal, or do everything within my power to help you. I ignored your pleas until the absolute last minute and I often let you get so sick that drastic measures had to be taken. I've even gotten mad at you and blamed you for our situation, as if there was anything you could do about it. These things have left you scarred by our shared experiences. I truly apologize for being a selfish child and a rebellious teenager.

It might seem like too little too late, but I want you to know that when my maturity finally caught up with me, and the gravity of the situation finally made sense, I went out of my way for you. I did everything within my power to help you when you got sick, and to attempt to keep you from getting that way. I even packed myself up and left the comfort of home, everyone and everything I knew, to travel to the other side of the country and the Great Unknown just so that you might get a chance to stay with me longer. I am grateful and SO thankful that my plan has worked for as long as it has.

I know that every single day presents new (and old) issues, but there is nothing to fear. I know that this burden has become cumbersome, but the two of us are stronger because of it.

You have taught me many things throughout the years. I guess the biggest thing would be to never take a breath for granted, because the next one may not come so easy or without a price. I feel that because of your struggle, I am a stronger person. Through all of your adversity, I have benefited in ways that most would not be able to see or even comprehend. You have shown me what a true "warrior" is and how the human spirit can embody the essence of strength and perseverance.

We've had a few scares here and there, but I don't want you to worry. I want you to focus on doing what you need to do, and leave the really hard stuff to me.

Our time together has been invaluable. I cannot express my gratitude for the things that you have helped me achieve in this life. It saddens me deeply to see you go, but I know that there is no other option. You have put on such a brave face for so long, people would scarcely believe me if I told them everything you and I have been through. I want you to rest now, my friend. The end is almost near and your work is almost done.

Thank you for beating the odds we were given at birth. Thank you for showing me (and the rest of the world) the type of person I am capable of being and becoming, and the type of life that can be led despite those odds. Most of all, thank you for living this life with me.

Your most grateful friend,
~Eyva






Feb. 7th, 2014

This past week has been a little emotional for me. Everything that happened last Saturday night is still not over in my head. The trauma from that event is enough to scar just about anyone, and it really tests my strength on many levels.

For anyone who doesn't know, I had another big bout of hemoptysis.

Here's a small chain of events: On Friday night, I got all excited because I got the notion in my head to start making gift cards. It's crafty, it's something I can do with little movement, and I'm really good with my hands, so it seemed like a good idea.

So Mark and I set out on our shopping spree. It consisted of Office Depot and Michael's Crafts. Office Depot went fairly quickly, but Michael's is a wet dream for anyone doing crafts, especially SCRAP BOOKING. There is shit for scrap booking all over the place. The second I walked in, the first thing I ran into was the giant bin of yarn that was half price because they want to get rid of it. I want to jump in it.

After all the bargain crap, the scrap booking stuff starts. Making cards uses basically all the same materials. So, we dove in head first.

Because of my O2 hose, and my obvious lack of easy mobility, I collect many stares. Most people don't mean to, and they catch themselves and quickly look away. Most of the stares I get are from children. They haven't yet learned that staring is impolite (or their parents haven't taught them) and can make people uncomfortable. I tend to get panic attacks when I go to places with a lot of people, usually it the grocery store, but it's basically any store now.

So, I had to fight through a couple near-panic attacks. I also get really overwhelmed when there is a bunch of stuff that I want to look at and I know that it takes physical exertion and stamina to do these things. I always feel like I'm dragging Mark around and torturing him by making him shop with me. Thankfully he was with me and is able to calm me down and make me smile again. He has the ability to make me feel like we are the only ones there. :)

Saturday morning around 9am, I woke up bleeding. I coughed a few times and then it was "go" time. I coughed out probably 6-8 tbsps. It stopped, so I decided to go back to bed and take it easy. I woke up an hour or so later and things were fine again. Then, sometime between 3p and 4p, I coughed out more blood. This time, it was only a couple tablespoons and it was darker, so I thought it was old blood from earlier and that things were clearing up.

Around 9:30p, I was laying on the living room floor playing Diablo III and I just exploded with cough. I jumped up and hauled ass to the kitchen where I would spend the next ten straight minutes bleeding from both my mouth AND my nose.

I've coughed out a lot of blood in the past. I coughed out about 40oz in a five day period. This time, it was easily 20+ ounces within 15 minutes. Ten minutes straight of coughing and spitting, hovered over the kitchen sink.

It wouldn't stop. I couldn't stop. It just would NOT stop coming. It was SO forceful and violent that it was coming out my nose. That has never happened.

There are very few times in my life where I've actually thought that I might be in danger of not making it, and I'm sure there are numerous times where I shouldn't have made it, but this was different. This is the first time where I actually thought that I might be seeing that last things I'll ever see, or trying to say the last things I might ever get to say.

I get emotional right now because I can remember Mark hugging me and us telling each other that we love each other. I was fighting a panic attack the entire time. When I panic, my heart rate soars and then pumps more blood, which is exactly what I didn't need. In the past, when I would cough up blood, I would always talk myself down and was always able to calm myself. I couldn't do it this time.

I don't really know how to explain what it's like to realize your last moments. I assume that it must be what drowning victims felt like. Essentially, that's what I'm doing. You get to the point where you feel like it's never going to stop. It was never going to stop and I was going to die right there on the kitchen floor in Mark's arms with Luna yelping and trying to jump on me. Knowing other Cfers that have died due to hemoptysis doesn't help.

Scared doesn't even begin to describe it. I was so beyond fear and processing what was happening that I kinda lost my senses. The coughing had slowed, Mark had already contacted the Pulmo on call at UCSF and had gone to get the car, and all I could think of was that I was going to the hospital so I better get my chargers and a pair of undies and some toiletries ready to go. I was roaming around with a large plastic cup of blood in my hands, pausing to cough into it and then looking for my stuff. Leave it to me to be in a situation where I'm possibly losing my life and I'm worried about packing my shit. My stupid brain.

If I thought about all the ways I could die from this disease, severe hemoptysis is probably the most shitty of them all. At least in other situations you lose consciousness first, but no, not hemoptysis. Yet in the back of my mind I keep thinking "this is how it has to happen". I keep thinking that I have been set on this path and the means to an end are extreme, but they are what they need to be in order for me to get there. I just need to find the silver lining in this. There has to be SOMETHING good that comes from this. I'm hoping that it speeds up the listing process and the tx team sees how dire my situation is getting. We all agreed that the chances of my surviving another serious bout like this is pretty slim.

So, my coughing fit ended just before Mark and I left for the E.D. at UCSF. He wheeled me in there and I was fighting back tears and a panic attack the entire time. I have to admit that I was not very thrilled about even being there, but I was less than thrilled about what happened when I got there.

You would think that if you went to the E.D. and told them that you have an end-stage lung disease and you are coughing up HUGE amounts of blood, that they would be a little quicker on their feet when it comes to getting you to a room and getting you properly assessed. Apparently not these people. We literally sat there for 15 minutes waiting for the clerk to find my file on the computer and he never could. He asked for my ID and shit too. I don't think he understood what was happening or what had happened. Even the nurse that was back there behind him looked a little concerned, kinda like "shouldn't we be processing this person into a room by now instead of letting her sit in the waiting room crying into her cup of blood?" He never could find my file so we had to start a new one.

I just hate going into the hospital anymore because they don't take care of me as good as I do at home. With them, my meds are always given late. They are always bothering me in the middle of the night. I can't do my midnight Ensures there because they can't leave enzymes by the bedside, which is complete bullshit. I've been doing this shit for 35+ years, I think I should be trusted with my own freaking medication. Same crap goes with my insulin. There's nothing like being absolutely starving, having your food come, and then having to stare at it for another 20 minutes waiting for the nurse to get there with both your enzymes AND your insulin. God forbid they forget one of those things too. It really is enough to make you rip your hair out.

I absolutely hate being second guessed by nurses too. If I refuse something, it means I REFUSE. Don't try to talk me into it or warn me about it, I know the consequences and repercussions. I AM A PROFESSIONAL PATIENT. I literally do this shit for a living. And just because you've "never had a patient do _____ before in all my nursing career" doesn't mean that there isn't a first time for everything. I administer all of my drugs and I access and deaccess my own port. I do all my own nasal and throat swabs and I place my own feeding tubes when necessary. When I tell you that something isn't going to work, like puncturing veins, I know what the fuck I'm talking about because I have lived with these veins for a LOT longer than YOU have. If you have some weird way that you like to do things because "it always works" for you but it makes me nervous and I can already tell that it's NOT going to work, then we aren't doing it your weird way. Especially when it comes to my veins. You get ONE try. If you start digging around in my arm, you are FIRED, and you better go get someone who's better than you, you know, like a PHLEBOTOMIST.

Nothing against my nurses, most of them are awesomesauce, but there are the random few that just ruin it for everyone. If I were ever to become a speaker in regards to Cf, I would speak to medical professionals about their bedside manner and how to interact with professional patients.

Anyhow, I survived my 6 days in-house, and now I am home doing home IVs for the next week. Since my lungs are so crappy, I can no longer do the Vest, which is what I used for airway clearance. I got this cool new device called a frequencer, it basically shoots low vibration sound waves through your chest. It's pretty awesome so far. Unfortunately, I only have it for about a week, as they are trying to prove to my insurance that I need this thing because I'm pretty much out of other options. So this one was loaned to me by the rep from the company. It's so small and quiet, I want one so bad!

Sadly, along with these embolyzations seems to come the most horrific chest muscle/nerve pain I have ever felt. We don't really know if it's related to the embolization or not, but it's debilitating. I can't even take a deep breath (not that I really can anyways). It's is the same pain that got me kicked off the list at Stanford that they refused to medicate me for. At least the docs at UCSF are more understanding and are willing to treat me properly so that I can work through this and get past it.

I'm going to start rambling now, so it's time to go. Love to you all. :)

~E




It has been one crazy hospital stay this time. There have been many things that I did not anticipate. I was apprehensive coming in this time because I think I let myself believe that I could take care of myself out of the hospital indefinitely until I get the transplant. I do IVs at home and I take care of myself better than anyone else ever could (at least, when I am conscious). At the hospital, I have to wait for people to bring me my meds, and they are not always on time. Sometimes the pharmacy doesn't send meds up on time, or at all. I never have that problem at home.

I also have to wait for food to get here. I don't mind, but at home, I can eat whatever and whenever I want. I also have the comfort of my own bed and all my own germs as well. I miss the nighttime snoring in stereo from my boyfriend on my left and my puppy on my right. I miss my happy hugs from Mark every evening when he gets home from work. We hold each for a few minutes, just to be close to each other. Physical contact is limited for me due to my limited lung capacity.

Then we talk about each others' day and how we are doing. Sometimes we sit on the couch and talk, all the while being attacked by a spastic Luna, who is so excited that she literally explodes (read as: pees all over the place).

I miss my exploding-with-happiness puppy. I could go down and check the mail and when I come up, she'll act as though I have returned from the dead. I miss her constant vigil over my whereabouts, and her tenacity to get into the bathroom when I am in there regardless of a almost closed door. Her nose is going to push that thing open if it's the last thing she does. And if it's all the way closed, she will be diligently perched on the rug just outside the door, awaiting my extraction. She will sit there and stare me in the eyes until it is time for us to walk into the next room, in which she will be overjoyed to be in and bring me a toy to play with. I hope she is enjoying her time with her Uncle Bob and he with her. She really is a joy to be around. You will never find a more loyal friend/ground worshiper than she. If she likes you, she will follow you anywhere.

I was admitted to the hospital through the Emergency Dept. here at UCSF. I came here at 5pm Monday night. I laid on a gurney in the E.D. for 8 hours before they were able to finally move me to a room. While I was in the E.D., there were many blood draws and other tests as well. I went to my room around 2am. We were still waiting for the order that allowed the to access my port. After we got the order, it was already 4:30am, and I had been awake the entire day. I told them that if I had known it was going to be such an ordeal, I would have accessed myself at home before I came in and saved myself the headache.

I only slept four hours that night. It really was NOT a good time.

I wasn't really getting well with the drugs they were giving me. We were still waiting on the sputum culture results to see which bugs were resistant and which were susceptible to the list of drugs available to me. By Wednesday, I began responding positively to the meds and things were beginning to look up.

Thursday night/Friday morning around 3:30a, I awoke to a very familiar sound and sensation: the gurgling of blood in my lungs and the subsequent drowning sensation. My urge to cough produced my nightmare. Beautiful, bright, brilliant red blood. Eventually, almost 2/3s of an 8 ounce SOLO cup, not to mention the stuff that I coughed into the little plastic trough they give you. Oddly, my first thought when I saw it in the cup was to take a picture of it.

I was going to post a gruesome photo of the carnage, but apparently Livejournal doesn't think I should have access to it right now, so I will spare you all the visual. It's not pretty.

After that harrowing experience, I managed to fall back asleep for a couple hours. They moved me to the ICU where they are better able to respond to me should I begin to bleed again.

With Haemoptysis, the worse your lungs are, the worse the episodes can be. I had haemoptysis a few times when I was 17 years old, and it was kinda freaky, but didn't surprise me. I went into the hospital, treated the lung infection and everything went fine for many years after that. It didn't really start up again until I was 29 years old. THEN it was frightening. It was MASSIVE compared to anything I had had in the past, and that freaked me out.

In 2007, I managed to talk my doctors out of a bronchoscopy and subsequent embolization after having severe haemoptysis for more than five days and having it completely diminished by IV antibiotics in the hospital. Surprisingly, I bought myself a few years without any issue. I only recently (as of late 2011) began to have increasing bleeding episodes. In my case, it can be either two tablespoons or eight ounce cups. Regardless, any amount is frightening, especially at this stage of my disease.

On Friday, my doctors came in and told me that they need to embolize. They showed me the CT scan of my lungs and it was just sad. Mark and I were both kinda shell-shocked at everything that was happening. I started to cry. Mark knew why I was so afraid. The last embo I had didn't exactly go very well and I was in the hospital for seven weeks and knocked off the transplant list. Those were the exact fears that I had this time, except I worried about getting ON the list and not knocked off.

I cried. Then I cried some more. I cried when Mark was holding me and saw how hard he was trying to hold back his own tears and put on a brave face for me. He was telling me that this time would be different. THIS time, I am healthier going into it than I was last time. THIS time, I am at a different place with a different team that has PROMISED that my pain will be taken seriously and managed well afterwards.

I was SO scared when they wheeled me in there, I was shaking.

I don't remember getting put under. I don't remember anything until I was back in my room. I knew that Mark was there. I think he came over to me. Apparently, I had him call my mom and I talked to her on the phone. I have absolutely no recollection of that conversation, or any conversation prior to about 9pm when Mark left for home.

For someone in my position, with my condition in the state that it is, I worry about strange things, like the welfare of my puppy and my home. People would think that I would have more troubling worries, like not being able to walk to the bathroom without getting winded, or having a coughing attack and very nearly passing out, but no. I worry about my home and home life. On Thursday afternoon, I was actually set to go home either Friday or Saturday. Then Thurs. night/Friday morning happened and blew my plans to bits.

I like to think that fate had me in mind and that this is the Universe's way of telling me that I need to stay here longer, for some reason. I'd like to think that it chose for this to happen to me NOW, before they let me go home and before Mark left for two weeks. Because if this had happened while I was home, by myself for two weeks, things would be a LOT more worse for the wear. Luna wouldn't be taken care of by Uncle Bob, and I would have been left weak and unable to get myself to the hospital, and probably would have had to call for an ambulance. I know that I would definitely be in dire straights.

I'm thankful that people have been so helpful to us during this time. It's been extremely stressful and that's exactly the last thing that I need.

Earlier today, it was thought that I would go home tomorrow. As it turns out, they have decided that it would more beneficial for me to stay in here than it would be to go home and care for myself on home IVs. The timing of the IVs is every six hours and that is just too difficult for one sick person all by herself to do. I don't mind so much. I'm just happy that THIS embo turned out a LOT better than the one last year. I'm thankful that I am able to walk around and use the bathroom like a normal person, and not lying in bed, immobile for a week due to pain. This is heads above the treatment I received a year ago. Makes me feel a little regretful that I didn't just come here in the first place.

If I never went to Stanford though, I never would have met the wonderful people that I have met. I'm thankful for that and the experiences that came from going there, but I feel like I am finally in the place I am supposed to be.

Things at this hospital have not been easy going. I've had numerous mistakes happen. I've been given the wrong food and put on the wrong diet numerous times. This place is new and these people have never taken care of me, so it's new for all involved. I don't have the beautiful views or weather that Palo Alto has, but I'm willing to give that up for big screen tvs and showers in every room. The food is 20 times better as well, which says a lot, for a hospital.

I've had a few slip-ups with medication, but nothing that causes great alarm. Mostly things like timing and dosage. Everyone I've met is pretty nice and personable, even the doctors. It just seems like there's less ego involved here. I also found out that UCSF has better transplant numbers than Stanford.

UCSF has been FAR more detailed than Stanford was as well. They actually required the liver biopsy PRIOR to getting listed for a new one, which ended up proving that I DO NOT need a liver at this time. I'm happy that UCSF has been more thorough. I'd rather have the testing done and address the problems beforehand than have something pop up and get blindsided.

So, it looks as though I will be here for the next week and Mark will be gone until the 20th. Luna will be with Uncle Bob until either Mark or I can get her back. I honestly can't wait to get home and get back to something resembling normalcy.

~E



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Worst Hospital Stay in a VERY Long Time

I knew that I should have gone with my gut instincts when I was speaking to the pre-op intake nurse on the phone on Monday.

She told me NOT to bring ANY of my drugs in with me, that they would be taken care of AFTER my procedure.

I barely even know where to begin with this. I'm SO upset by the lack of communication between the liver team and my Cf team about what was happening with me that I don't even know who to be mad at and why.

Ok, so, to start, I'll tell you what was SUPPOSED to happen. I was scheduled for a vascular liver biopsy at 9am Wednesday morning. A vascular liver biopsy basically means that instead of the old fashioned way of biopsying the liver by jamming a large needle between the ribs, they can now go in through your jugular vein and access the liver through the superior vena cava.

Sounds fairly simple, as far as procedures go. The whole actual procedure should be done in about ten minutes. More time is spent prepping than actually DOING the job.

In order for ANYTHING to go near my jugular, I NEED to be sedated. We found this out the hard way with my most recent attempt at a heart cath. I have such a bad panic attack that I can't stop heaving. Note: with a heart cath, they can't sedate you because they are measuring the strength of your heart and sedation changes the way your heart behaves, ergo a false reading.

Now, being that my disease is so advanced, putting me under general anesthesia is not an option. The next and only time I will ever be able to be put under completely will be for transplant. That being said, my options are slightly limited. I have to have what is called "conscious sedation". This is so that they can ask me to do things and I can understand enough to comply to commands, such as "turn your head" or, as I had to do with the liver biopsy, "take a deep breath and hold it in."

The usual cocktail for "conscious sedation" is generally a combination of Versed and Fentanyl. Versed is a benzodiazepine, a sedative with hypnotic, muscle-relaxing properties. Fentanyl is an Opioid pain killer. So basically, I'm sleepy and can't feel much.

I've had this cocktail before. Last September, when I had to have both lungs embolized. It worked WONDERFULLY, as I do not remember the procedure, nor was I in immediate pain FROM the actual procedure (that would come later).

If it were in my power, I would give a serious negative review for MANY people involved with what happened to me yesterday. That being said, there were also many people there who were just trying to do their jobs and were kinda thrown in the situation the same way I was.

I woke up super early so that I would be on time for this appointment. I wanted to get it over with and get back to my hospital room so that I could heal and get the hell out of there. My biopsy was scheduled for 9am. I arrived at the hospital at 7:45am. You would think this would be enough time, right? I sat in admissions waiting room until almost 9am. I was a little worried because nothing had been done except they scanned my insurance cards.

FINALLY, transport comes for me and we head to the I.R. floor (Interventional Radiology). I get changed into a gown and go into pre-op/post-op. I meet my nurse. Her name is Anne, she is Russian, and has the demeanor of a Russian Drill Sergeant. She ascertains that I have a port. I tell her that I will access my port. She says no. I say yes. She says that only she can access my port. I tell her that only I can access my port.

**crickets** **staring and long silence**

She then says okay, but in her MANY MANY years of being a nurse, she has NEVER encountered a patient that accesses their own port. I tell her that I am the only person who has EVER accessed this port, even the day that it was placed. I have a fairly old port, it is almost 6 years old, I have ZERO margin for error. If I were to let someone else access it and they screw up, I would literally have their head. If I am the only one accessing it and it gets screwed up, I am the only one to blame.

So, Ann doesn't like me at all now, and it's obvious in her lack of communication and anything to even do with me from that moment on. Wonderful. I overhear someone come in the room and ask if I'm ready to go. Of course, I wasn't because I still had to access my port. I get it done and literally sit there for an hour, waiting for someone to take me somewhere or even tell me what the hell is going on. Nothing. FINALLY, around 10:30a, I get wheeled into the O.R.

I meet with the radiologists that are going to be doing the job. I meet the anesthesiologist. Seems like a nice guy. Sidenote: I love how San Francisco is such a melting pot. One nurse was an old American lady, the other was a young Vietnamese guy, my radiologist was British, and my anesth. was German. Not to mention Ann the Russian Drill Sergeant.

To the point: I FELT EVERYTHING. They put lidocaine in my neck to numb it so they could insert the tube, FELT ALL OF IT. I felt the tube sliding in and even kinda "sticking" on my dry skin. Perhaps I should have mentioned that Lido only works on me for a VERY short period of time. I'm not remembering much about what's happening around me, but I remember all the feelings I had. I remember German guy asking me if I was okay and if I could feel anything. I remember crying and telling him yes. I also remember crying when they were either putting the tube in or pulling it out, telling them that I feel it in my neck and I feel it going down. I eventually even felt the pain in my liver where they took the three samples from. THAT pain went away quicker than the neck pain.

I don't remember them putting the bandage on my neck, or being wheeled back to the post-op room, but I remember waking up in there with such a horrendous literal pain in the neck. I was crying, actually sobbing and holding my neck because it felt like if I didn't hold it in, it would explode.

I looked over at the woman laying on the gurney next to mine. She had this look on her face like "holy shit, what did they do to YOU?" which was then followed by the "glad I'm not in YOUR shoes" look.

They called in the docs and told them what was happening. Apparently, they had given me some Propofol and Fentanyl in the O.R. After getting back to post-op recovery room, the nurse gave me some more Fentanyl because of the amount of pain I was in. It didn't seem to be working. And this is all given intravenously, so efficacy is immediate.

The nurse called the doc back in and I was still wailing in pain. Out comes the Dilauded. Holy crap does that stuff ever have an immediate body-numbing effect. You literally feel it overcome you like a wave. Sadly, it dulled the pain by about half, but not all the way, which is fine by me. I was sore, but not sobbing in pain anymore.

All of this happened around noon. I sent my first text to Mark at 11:54am. I have no idea how long I laid there wailing, but I don't think it was too long. Sadly, I would wait in the recovery room until 4pm before they decided to move me to what's called "Limited Stay Unit." Basically, for people that only need to be observed for 24 hours.

This is the part where I really start to question what's happening to me and why. The LSU is a ward-type setting; a giant room with beds all separated by curtains. Anyone with Cf will tell you that we absolutely CAN NOT be put in this type of setting. We are ISOLATION ONLY, due to our increased risk of catching infectious bugs and diseases. Someone forgot to mention this to ANYONE I spoke to yesterday.

A doctor from the liver team came and spoke to me immediately after arriving there and I asked him why I was being put here and told him that I need to be in a private setting due to the risks involved. He had absolutely NO CLUE what I was talking about. Apparently, he didn't even know that I had Cf. At least, he acted like he didn't.

By this time, I'm getting pretty irate with all the shit that's going on around me. I've already had to go over my med list with about 6 different fucking people, AND, I had been ordered not to have any food after midnight the night before the surgery. So, when I woke up that morning, I didn't get to have my coffee. I didn't get to have ANYTHING. Even after the procedure, I was only given 4oz of apple juice and 4 saltine crackers.

Mark got off work around 6:30p and I had sent him a text, telling him that I desperately needed food and asking for KFC. My wonderful knight in shining armor brought me up two bags of food around 8pm last night.

So, I'm sitting in this "ward" and no one is able to do anything for me. I had been told NOT to take any of my oral meds, and the last breathing treatment I had was at 6:30a. that morning. I have some meds that require me to take them at the same time every day for efficacy issues, such as my long-acting insulin. I didn't get ANY of these things there.

I end up not being moved to a private room until 8:30pm. So, I sat in the recovery room for 4 1/2 hours, and the ward for another 4 hours. I finally get to my room and it's more of the same shit with the next round of people. I'm not allowed to eat the chicken I just got until my blood tests come back, and even when they did, the fucking liver team orders a NON FAT DIET. For a Cfer. WHAT THE FUCK? Seriously.

I looked at the nurse and I told her that I am eating my goddamn chicken and if anyone has anything to say about it, I'd like to see them come in here and take it from me. She was a cool nurse and very empathetic. She kinda laughed at that when I said it. I was completely serious too. It had been more than 24 HOURS since I had eaten, and unless you are supplying me with some sort of other nutrition (IV or feeding tube), letting a Cfer go that long without food is dangerous, for their health and mine. I know for a fact that I lost a few pounds because of that shit.

On top of it all, I basically had to BEG them to get a respiratory therapist to come give me a simple treatment. Something that I am supposed to have every four hours, was done at 6:30am and 9pm.

And the doctors wonder why I tell them that I can take better care of myself than the hospital can. At least I would have administered my meds and did my treatments on time. This possibly cost me some lung function, not to mention being in a room full of other sick people, separated by nothing but a few feet and half a curtain.

Worst night of sleep in a hospital in a long time as well. People wanting to come in and check my freaking blood sugar every other hour. Someone opening my damned door to "check on me" every hour. The room I had was directly across from the rooftop that seemed to contain everything mechanical the entire hospital needed, making it sound like someone was warming up a jet out there. Serious neck pain and the feeling that every time I cough (which was often, seeing as I hadn't had a damned breathing treatment) my freaking neck was going to explode.

And the icing on the cake? My stupid tv didn't even work. So I couldn't even relax and just get lost in a program for a while, or learn about the day's happenings. Both my phone and iPad were either dead or dying, so nothing to do there. I just decided to lay down and try to go to sleep, but even the people there didn't want to let me do that. What sucks is that I wasn't even on IVs, so the nurses had no real reason to come into my room other than to look at me and make sure I was still breathing and not bleeding all over the place. Then, some freaking nurse's aid came in at 12:30am and wanted to get my weight. I told her that they got my weight when I got there and to get the hell out and stop bothering me.

How the fuck do they expect people to heal if they won't let them rest??? This is one of my BIGGEST complaints about hospitals. They have all this "protocol" to follow and someone gets the ingenious idea to add something ridiculous to that list every year, or so it seems. One of the most recent is that they have to check on the patient once an hour.

Tell me how badly that would bother you if you had someone come in EVERY HOUR and ask you if you are okay and if you need anything. Why even have a call button? If I fucking need something, I will call you.

I can understand having this in place for people that need it, like people prone to falling, or those that are REALLY ill, but for a Cfer, this is definitely NOT ideal. If I were THAT ill, I'd be in the ICU. Until then, leave me the fuck alone.

Sorry about the cussing and the rant, I've just had a REALLY horrendous 30 hours. And I don't know why I even bother calling Yellow cab. Unless you schedule a pickup online a day in advance, their drivers seem to have NO CLUE where anything is. That's another rant that I won't start.

My poor pup Luna had to spend all day by herself. Mark had worked from 6am until 8pm, and I had left at 7:30am, so she was home for over 12 hours by herself. She did end up stressed out and pooped on the area rug, but thankfully, this was the only surprise she left us. She's not destructive, and she has plenty of toys to play with. I found out that when she's here alone, she basically runs from room to room looking for us.

She literally exploded last night when Mark came home, and today when I came home, she was so excited that she couldn't even breathe. She must've thought I died or something. Pee and fur EVERYWHERE, just flittering around me and scratching at my legs, trying to climb up them. It was instant puppy attack.

So, thanks for letting me rant about my horrible experiences. I guess that the procedure went just fine and we should have results back in the next 48 hours or so. Crossing my fingers that my cirrhosis isn't as bad as we think and that I WON'T need a new liver!

Love to you all :)

~Eyva



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Life with End-Stage Cystic Fibrosis

I started writing this about a month ago and was trying to put a comical spin on what my daily life looks like. Some days are better than others, some are worse. It balances out. :)



On any given day, I take 30-40 pills. Most of these are digestive enzymes to help my body process fats and sugars properly. The others are various vitamins and antibiotics to help stave off lung infection, along with liver medication and psych meds.

I do four to five breathing treatments a day. The morning and bedtime treatments take an hour each, and the others are usually 20-30 minutes. I can't really do much of anything during treatments because I am literally tethered to these machines by 3ft hoses.

My throat is always some level of sore due to coughing so much.

I can't swallow properly. I found out that it's possibly the portal hypertension I have but was told that it is more than likely because I am old. At least, old for a Cfer.

I have never been able to envision myself being an old person. It is very strange to think that things are now happening to my body that for once, are NOT due to Cf, but due to getting old. Oddly, this makes me happy.

My heart is Tachycardic (beating too fast). This is because I don't get enough oxygen to my extremities or organs, so it's trying to compensate by pumping more blood. Thankfully, I have a really strong heart.

My fast heartbeat and the amount of energy I exert from coughing and just trying to breathe makes me very tired. I usually sleep 9-10 hours a night. Sometimes I even nap during the day.

75% of the time, I cannot breathe out of my nose. 25%, I can't breathe out of my mouth. It works out.

My sinuses are completely full of mucus and are putting pressure on my head.

The last time I had sinus surgery to help deal with the pressure was 1995 and I nearly died of Toxic Shock Syndrome due to improper care, which has made me extremely leery of getting another surgery of the kind.

When I had Toxic Shock, I couldn't eat, everything tasted like metal. I spiked a fever that eventually topped out around 104.8 degrees. I lost 25 lbs in 5 days, I would randomly pass out VERY slowly, starting by losing my hearing and then my sight and then falling over. I could no longer walk on my own. I was in the ICU for 7 days and could only move my head. I lost all the skin on my hands and feet and I developed a cardiac arrhythmia that eventually went away. I had severe iron, potassium, calcium and protein deficiencies. Before TSS, I weighed 130 lbs. I haven't been able to climb above 115 lbs since.

Because of my nose being obstructed most of the time, my sense of smell comes and goes. Mostly goes.

When I cough, 90% of the time I pee myself a little. Sometimes a lot.

I constantly pull muscles. Mostly abdominal, but sometimes intercostals, and the occasional glute (yes, sometimes I pull my ass).

A Charley horse in the ass is really painful.

I have coughing fits that bring me to the point of almost passing out.

I am always one coughing fit away from a migraine-level headache.

I have proven, on more than one occasion, that it IS possible to cough, sneeze, cry, snot, drool, burp, vomit, piss, AND fart at the same time, while driving a car down the freeway. I have friends who can attest to this, as they have witnessed it.

I wear oxygen 24/7 at such a high rate that the hissing noise in my nostrils sometimes keeps me from falling asleep.

I have some of the biggest boogers I have ever seen come out of a human.

I have to clean the boogers out of my nose 2-4 times a day. The irritation causes a lot of bleeding and I often have to wedge tissue up my nostril. I then wedge my nose hose in there too for good measure.

Sometimes it's so hard for me to breathe that I have to sleep elevated because laying flat causes a coughing fit.

My breathing is such a task that I am gasping for air any time I eat or drink, which then causes me to burp a lot because I swallowed all that air.

Every time I eat a normal sized meal, the food pushes up on my diaphragm, making it extremely hard for me to breathe (this is why when I am sick, I have to chose breathing over eating and therefor I lose weight).

9 times out of 10, my cough will trigger my gag reflex.

If I have a bad coughing fit after eating food (which happens 50% of the time), I will vomit in my mouth, and because I can't afford to lose any of those valuable calories, I have to swallow it back down.

I set my alarm for four hours after I go to bed so that I can wake up, swallow some enzymes, slam an Ensure Plus or two, and go back to sleep. I do this every night in order to try to gain weight.

People with Cf usually burn twice as many calories as our healthy counterparts. To counteract this, we have to have a really high daily calorie intake. Usually between 3K and 4K.

I am proof that highly processed foods make you gain weight.

Due to Kypho-Scoliosis, my spine, neck and shoulders are completely fucked up. I would be like a jigsaw puzzle in a Chiropractor's nightmare.

Because the bone structure of a person with Cf is mutated (I blame alien genetics), my head does not sit like a normal person's does. Instead of being like an i, where the spine goes up and a head sits on top, my spine is more like a c, where the head sits forward on the spine, giving us the beautiful physique of Quasimodo.

Also because of the Kypho-Scoliosis and the placement of my head, my Trapezius muscles are constantly tensed due to attempting to hold my head in place. It is a constant battle with gravity.

I am in some sort of pain everyday. Usually, it's a culmination of lung, chest cavity (usually the pleura), muscular, arthritis and digestive tract pain. Or any one or combination thereof. I can usually handle it during the day, but after about 10-12 hours, I can't take it anymore and need to take a pain pill.

Pain pills can and will make you constipated.

I have such loud Tinnitis that sometimes it literally blocks out all other sounds for a few seconds. Sometimes it keeps me from sleeping as well. I also think that I hear phones ringing when they aren't, and hear other "bell" like sounds. I've also lost 2 pitches of sound.

I cough up something red every other day. Most of the time, my mucous has a red tinge to it.

Coughing up a mucous plug is really painful for me. The biggest one I've ever coughed up was just a couple weeks ago and it was an inch long. It opened up a lower part of my right lung. I could actually feel the difference.

I have small bouts of hemoptysis, usually as I am laying down to sleep. I am thankful that they are small because they didn't used to be.

Because of numerous severe hemoptysis episodes, I had to have both lungs embolized. This is where they go in and basically "glue" the rupturing blood vessels (and associated bronchi) closed. I lost over 10% lung function because of this.

When I was embolized, they "glued" too close to a major nerve bed and I now have permanent nerve damage on the entire left side of my body. It feels like pins and needles, especially when touched.

I shoot two different types of insulin every day. One basal (long acting), one analogue (immediate). Sometimes I start crashing and the only thing my stupid brain can think to say is "UH OH!" repeatedly. Diabeetus blows.

Mark now knows what to do when he hears me say "UH OH!" repeatedly.

Everything I have wrong with me is due to having Cf. I have Cf related Diabetes, Cf related arthritis, Cf related liver disease, and Cf related sinusitis. If I didn't have Cf, I'd probably just have Asthma and Hay fever like my dad did.

I have to save up energy to do simple things, like shower or load the dishwasher.

When I was recently in the hospital, I nearly passed out in the shower twice due to blood sugar crashes. This has given me an irrational fear of showering, not all the time, but most of the time. I'll go days without bathing, it's not pretty.

I have a small panic attack inside when I see a staircase or even a slight incline.

On top of taking care of myself, I have to take care of my dog Luna. She's pretty awesome, but she has needs too, and I am usually the only one around during the day to fulfill them. I'm extremely happy that I got a small dog. She is a wonderful companion and has greatly improved my quality of life. Plus, little dog = little poops. Not much mess to clean up.

Everything I put in my mouth has to have calories in it. (Insert dirty jokes here)

Going outside is considered an Extreme Sport for me.

I can no longer patronize grocery stores. I have found them to be huge germ havens and usually become very ill after being in one. Mark is gracious enough to fill our grocery list every week. I am also lucky that our main grocery store offers home delivery, should Mark not be around to go.

If I didn't have to go to doctor appointments, I would only leave my house twice a month. Maybe.

One of my big O2 tanks lasts me about 3.5 hours. One of the small ones lasts 26 minutes.

I live on the second floor of our building. This doesn't help get me out of the house more. Oxygen tanks are heavy. I am weak.

I order everything online. Literally EVERYTHING, from dog shampoo to pie filling. Amazon Prime is awesome.

Hugs to you all. :)




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Wowsers. Today has been a REALLY long day for me. It is pretty rare that I am out of the house for longer than a few hours, so being out of house for seven hours was a doozy!

I'm okay with it though. Mark and I headed to Marin for a while. We stopped and got some Mexican foods (Flautas!) and then had to head back to the city for my 2pm appt for massage. It was the first professional massage that I have had in YEARS. I went to see a student, her name is Heather, and she is WONDERFUL, and super sweet too. We hit it off right away. She went easy on me and thankfully so. I almost fell asleep on the table. I left there feeling totally relaxed and calm and just happy over-all. I was happy about how I felt, I was happy about meeting a really good MT that turned out NOT to be a horror story, and I was super happy about having another appt booked for next week.

I know that it will take a few sessions to get me feeling good and having less pain. She released so many toxins back into my system that I have been feeling dizzy/light-headed, and feeling like I need to vomit. That's one way of knowing that she a good MT! lol

I haven't written in here for quite a while. I'm not sure why. There have been a few occurrences but nothing outrageous. Mark had to go to work in L.A. for 12 days at the beginning of the month, so his wonderful supermom Fina came to stay with me during that time. She is such a sweet, wonderful lady, I couldn't have asked for a better companion for that time. We went shopping up the street and she bought me a shirt, and she even convinced me to buy a maxi-dress. My first ever. I am very happy with it. :)

As far as my health is going, I'm still breathing. I have pleuritic pain every day now. At least I think it's pleurisy. Sometimes I get really stabby pains that feel like they are deeper, like inside my lung. I just say that it feels like my lungs are dying a slow death.

I was having small bouts of hemoptysis at night, usually right after I lay down to go to sleep (I always have a coughing fit when I try to lay flat, this triggers the bleed). I decided to stop doing my Pulmozyme inhaled med at night, to see if it was the catalyst. Sure enough, no more night bleeds. But also, no more 2 doses of a mucolytic a day to help thin the mucous.

I had a clinic visit with the transplant team. I just need to see a Dentist (which I have scheduled for later this week) and that should be all they need from me at this time. After that, they review my case and decide whether or not we will go forward with the transplant. At that time, if they decide yes, I will meet with the Live trans team and be evaluated by them. I'll do whatever tests they need me to do, and possibly a liver biopsy, and then hopefully they will concur with lung docs and I will be RE-LISTED FOR TRANSPLANT! All my appendages are crossed, but I honestly think I got this. :D

I've been doing a lot more crochet as of late. I learned a very valuable lesson about the types of yarn you use. I have decided that I will not use anything that I wouldn't want for myself. I have an empty Etsy store that is just waiting for stuff, so I am being a busy bee and trying to get things made! It's funny, I opened the Etsy store in January 2012 and never did anything with it. Now, since Mark's mom was here, I have really been focused on making things that are really nice and actually USEABLE. I'm also looking into doing Amigurumi (Japanese for "small toy"). My mind just runs with it when I get on the subject of crochet.

Mark and Luna have been well. Bloons is always a treasure, I can't even imagine my life before we got her. She does some of the smartest things I've seen a dog do, and then she follows it up with some of the stupidest shit I've seen a dog do. She is usually hours of entertainment.

After my massage today, Mark and I went over to his brother's house to visit with him and his fiance. We stayed for a few hours and had some really great conversation. It was really fun and I hadn't seen them in a while.

I'm still feeling nauseous and am wondering if I should even attempt to eat, since I am hungry. I worry about the vomiting thing though.

Well, I am off for now. Hopefully next time I won't wait so long between posts. Love to you all. <3

~E



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May. 10th, 2013

So tired and drained from the events of today. I awoke at 5:45a after about five hours of sleep. I couldn't get my mind to settle last night, I was very anxious about the appointment this morning.

I had an appointment at 7am today for a right heart catheterization. I have a nasty history with this procedure. Basically, what it does is measure the pressure of the pulmonary artery and whether or not the Tricuspid valve between the right atrium and right ventricle is working properly.

There are a few different ways they can do this. There's the Femoral artery (the groin), the Radial artery (the wrist/forearm), and the Aortic artery (the jugular). The forearm was out for me because my arms are so scarred up from years of pokes and PICCs. The Femoral is less ideal because I would have to be kept at the hospital lying flat for four hours after the procedure. So, that left me with my neck.

A little history: I had this procedure done in August 1999 as part of a 5-day transplant evaluation at the U of M, Minneapolis. I did not live in Mpls at the time, so I had driven myself to the cities and stayed at a hotel by myself, all while riding a shuttle to and from the hospital for tests for five days straight. They literally saved the worst thing for last. On the fifth day, the only thing I had to do was a heart cath. I had never had one of these done before, so I didn't know what I was in for.

Everyone knows I used to be a singer. My throat is VERY valuable to me at this time. Most people also know about my claustrophobia. So, I found myself on a metal table, head turned to the left, with a MASSIVE metal X-ray "disc" smashing down on my face. Then, a doctor who apparently had very little patience that day, was attempting to access my jugular with a fairly large needle. It took him FOUR punctures to get it in. Granted, the jugular is basically wrapped in fibrin and difficult to stab.

They didn't give me any sort of anesthesia, due to it dropping the blood pressure and them getting inaccurate readings. So, what they do is inject Lidocaine as a local. It may numb it a bit, but you can still feel pressure. I then start having a small panic attack and tell him that it feels like he is stabbing my throat. I asked him a few times if he was stabbing my throat. At one point, I was beginning to sob and he then proceeds to YELL at me that "it's not in your damned throat, just calm down."

At which point, I'm freaking out internally and holding my breath as much as possible, and thankfully, he had finally accessed the vein and they were getting readings.

Afterwards, I had to do some blood work. I went and they took about a pint of blood from me, gave me apple juice and graham crackers and a foot in ass out the door. I could hardly stand while waiting for the shuttle to pick me up. By the time I got back to my hotel room, I called my father and he could barely recognize my voice through the uncontrollable sobbing. It was not a very fun day. I was in a strange city, by myself, I knew NOBODY there, and my nearest family were 4 hours away.

So, back to today. I'm already freaking out in the waiting room and I haven't even seen a nurse yet. I tried to maintain composure enough to change into a gown and get an IV placed while going through my med list. Then I start getting anxious. My hands start fidgeting and my breathing gets shallow. One of the attendings came over and introduced himself as Ziggy. He was pretty nice. He tried to calm me, gave me a half milligram of Atavan (which didn't do shit), and asked me what I wanted to listen to in the procedure room. I told him Johnny Cash. :)

I had little bouts of freaking out that would come and go. Then, it was go time. They had sterilized the area around my neck and had placed a cloth over part of my right cheek. The Dr. came in and at this point, I'm back to fidgeting and shallow breathing. I think I was mostly upset because nobody was talking to me, telling me what was happening. All I got was "Okay Eyva, this is just the Lidocaine injection."

In my mind, there were quite a few steps that they had forgotten to tell me. So, it was like I'm laying there and they are setting up, and then BAM! There's a freaking needle in my neck.

The very second he started injecting that burning, stinging nightmare that is Lidocaine, I lost my shit. My heart rate jumped up about 30 beats, I was doing some sort of scream/wail combination, and my chest was heaving. When that happened, I think it kinda freaked the Dr. out because he's nervously telling me that I have to calm down and try to breathe normally and try to stop heaving. Yeah. Good luck with that.

The danger was that he still had the needle in my neck and there is a risk of puncturing the upper lobe of the lung. Since I was in a full on panic attack, there was nothing he or I could do, so he had to attempt to pull the needle out with the hopes that I wouldn't heave and shove it back in.

People came in and tried to calm me, but then I heard them say that they were cancelling the procedure altogether. Second wave of losing my shit ensues.

In my mind, I was convinced that my transplant eval was hinged on this procedure, and that if they couldn't do this, they would refuse to list me. I'm not sure if I had one long panic attack with a slight intermission, or two panic attacks where the first one was just a preview of the second disaster that was to come.

Thankfully, they were able to call the trans. doc and tell her the situation. She agreed to just let me get a contrast ECHO and they would determine from the ECHO whether they think I really need to get a heart cath. I wish they would have told me the options before. I think that my fear of this procedure was a bit underestimated.

I'm not saying that anyone was at fault, I think they just wanted to spare me from having to do more than one test, which is common sense. I just wish that there had been a dialog before hand and maybe I could have been given a choice.

Anyhow, Mark and Luna had been in the waiting room the whole time. After we left the hospital, I got to go get doughnuts. :) We were both pretty starving, but Mark was able to get something to eat at the hospital. I wasn't allowed any food since midnight, so I was STARVING by the time we got home around 12 noon.

As I have been sitting here tonight, I started emotionally processing what happened today. I began to feel ashamed that I'm no longer the "tough girl" I used to be. I remember laying there on the table and imagining my dad standing there, holding my hand and being like "it's okay baby, you can do this. You gotta suck it up and keep going." Even that didn't help. I guess I just feel like that stone wall that's been hacked at and hacked at for so long that it's finally crumbling.

I hope that the ECHO comes out okay. I hope that I don't have to go through any more nasty procedures. I just want this part to be over with so that I can just be on the list and be happily (nervously, anxiously, excitedly) waiting for my miracle.

Jesus, if I have a panic attack at a heart cath, I'll probably just pass out when I get "the call".

Until next time....

~E



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Happy Birthday to Me....

Well, I made it to 35. Not bad, I guess, considering they told my parents that I wouldn't live to see 10 years of age. I joked with Mark earlier that it's no wonder that I'm so rotten, I'm 25 years past my expiration date!

Birthdays aren't what they used to be, at least not for me they aren't. I guess I'm officially "middle aged". I definitely don't mind this. Considering how many of my friends will never see this age, I am feeling blessed.

This day has been a roller-coaster, physically and emotionally. Physically, I was out and about in the car by myself earlier and I made the silly mistake of leaving the house without checking the trunk to see how many (if any) full O2 tanks I had. We usually have two big ones and a small one back there. Sometimes, when I swap out the tanks, I forget that there are EMPTY tanks in the trunk and I forget to ask Mark to swap them out for fresh tanks. This was the haps today. I ran out of O2s while I was down in San Carlos near Mark's work.

I'm on 4-5 litres per minute, which burns through big tanks in about 3.5 hours. I went to swap tanks and saw that I had nothing but empties. Mark left work early to drive us home. I was passing out in the car. Lack of O2 will do that. The oxygen in your blood is measured as O2 saturation levels in %. Normal levels are obviously 95% or greater. When I have no oxygen, my sat levels are upper 50s to lower 60s. It gets a little scary.

Also today, I had the wonderful joy of going to UCSF and getting my blood drawn for lab work. I was told by my tx coordinator to make sure they gave me a certain form for a specific test. Of the THREE checkpoints I had to go through before actually having a needle in my arm, NOT ONE of them had a clue as to what I was talking about. I ended up having to call the tx coordinator and have her speak to the phlebo taking my blood. So, what should have only taken half an hour, ended up taking three times as long and forced me to miss a different doc appointment and I had to reschedule. I was NOT HAPPY.

Emotionally, as far as turning 35, I'm neither here nor there. I can't think of anything negative about getting older. Of course, I miss my youth and wish that I had my old body back, but these are normal things that I think every 35 year old woman feels.

Unfortunately, today I learned of the death of one of my Cf friends. She was someone I had met maybe five years ago at the U of M Fairview hospital. Her name was Tiffany and she was ten days shy of her 25 birthday when she passed on April 20th this year. It's always hard for me when a fellow Cfer dies, and it's exceptionally hard when it's someone I knew in person. Her mother Cyndi had to make the most horrific decision to unplug the machines. There was nothing more they could do. They had tried everything but she never woke up.

I always put myself in those situations. I think I might speak for a lot of Cfers when I say that it is always in the back of our minds. When we see a fellow soldier fall, we kinda just know that it will eventually be our turn. It comes for us all, and the Cf will eventually win. I pray for all of my fallen friends and hope they are finally free.

I didn't do anything special today. I went to McDonald's and got what they pass off as a chocolate shake and a large order of fries. They skimped on the fries. Jerks. Luna was with me all day and she was doing pretty good. We were going to go to a park and eat, but that's when I ran out of O2s. Ever since we came home, I've pretty much just been hanging out. Mark is so sweet. He's been randomly telling me "Happy Birthday!" all day long and he'll come over and give me a hug and a kiss. I'll probably just end up ordering a pizza and sitting on the floor watching a movie. Birthdays aren't at all glitzy and glamourous for me anymore. I'm just thankful I made it this long with all my original parts. :)

I love reading all the happy bday comments on fb, and the phone calls I've received. Thank you to everyone for all the well wishes, they are greatly appreciated. Love to you all.

~E




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A bunch of sickos around here

My title might be a little misleading. lol. It seems both Luna and Mark have colds. Well, Mark more than likely has a cold and is doing his best to stay away from me as to not spread the ickies to me.

Luna had a vet appointment today. I am SO proud of her, she is one tough little cookie (like her momma!). She got her final PARVO booster and her Rabies shots today. I have noticed for about the last month or so that she has this strange cough/hack thing that she does every once in a while. I noticed that she was doing it more when she exerted herself or when she would eat or drink.

I seriously worried that she might have what's called "collapsing trachea", it's very common in smaller breeds. I also thought that she might have kennel cough, but thought that would be strange since she has been vaccinated against it, and is rarely outdoors, let alone around other dogs.

The vet checked her out and said that her trachea seems to be fully intact, so that was a relief, and the cough may just be a cold or allergies. She said I could give her a little bit of baby Benadryl if it gets noticeably worse, or I could also give her some baby cold medicine. I just have to keep an eye on her to make sure that she doesn't get worse. My little trooper.

I had a pretty good day today. The weather wasn't that bad, just a little windy. Luna has a new harness (having the leash connected to her collar can cause her trachea to collapse and I'm trying to avoid that), and she's doing really well walking on a leash. She just needs to get used to being around other dogs.

I shit you not, she is my little guardian to a T. We were waiting to be seen and there was a little Chihuahua that wanted to come over and visit and Luna wasn't having it. She started growling and did a really quiet bark. She's super protective of me. So, I had to get on the floor and approach the Chihuahua myself and show Luna that it's okay to make new friends. When we were checking out, a HUGE German Shepard came out of a room and walked passed us and sat by his owner. Little Luna started growling at this horse of a dog that could literally swallow her whole in one shot. I just laughed.

I was supposed to grocery shop today, but after the vet, neither Mark nor I were feeling up to doing it. He's been super tired because of his ickies, so we just came home and rested.

Not a super exciting adventure today, but I felt like sharing a story about my super cool dog. :)

~E





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Tough Day...

I've been having a really tough day today with my emotions. For some reason, I am REALLY feeling the absence of my father. I've felt like he's been around me, but I wish I could just dial his number and have a conversation with him again.

My father could be a really mean person. I mean REALLY mean. I'm not going to go into details, but my childhood was less than stellar to say the least. My earliest memories of him are not good ones. It took many years for us to reach a place where we both came to understanding each other, at least I did. As I got into my 20s, I started to really see my parents for the people they were. Not as my parents, but as singular humans.

It couldn't have been easy for my dad when he got my mom pregnant. I was not planned, and neither were any of my three older siblings. My parents were only 22 when I was born. I was my father's first child and my mother's fourth (she had been married twice before my dad). My dad, feeling that he had to do right by my mom, decided they would have a shotgun wedding and he would move her and the three kids out of Florida and up to South Dakota, where he grew up and where his family were.

I can't imagine what it must've been like, 22 years old with a wife, four kids and a mortgage. I think of myself at 22 and it just amazes me. I think he held a lot of resentment towards my mother and her three children. Not that it was her fault and not his, but I think he resented her for simply being there.

Don't get me wrong, my father loved my mother very much. There were many happy times as well. Unfortunately, the bad eventually outweighed the good and they separated after ten years.

Without going into detail, I know that my dad felt bad about how things had turned out between them. I think he had wished that I could have had a more traditional style family life, for whatever that means. I know that he had been worried about how their divorce would affect my views on marriage. At the time, I didn't think much of it, but as I look back on my own relationships, I see the damage that it had done. How my parents' relationship had affected how I would view the dynamics between a husband and wife, or two partners.

I think it took a long time for him to come to terms with who he was and where he was at in life. I think he had finally been able to find happiness with his new wife and his job and what his life had turned out to be. We had finally been able to put aside all the bullshit from our past and become friends.

On October 14th, 2003, my dad had woken up having trouble breathing. His throat was swelling closed, so he was rushed to the hospital where they admitted him. I happened to be in town at the time, so I stopped up to see him at the hospital that night. He told me that he had been bitten by a spider in his sleep and he was more than likely having a reaction to the venom. He said they were keeping him there to do some testing to find out what it was.

It was a strange site, to see this big man lying there in a hospital bed, being vulnerable. I had never seen him in such a state. Our roles were now reversed, and it was MY turn to visit HIM in the hospital. I wasn't ready for that.

They tested him every which way they possibly could. Finally, the results came back that he had AML. Acute Myeloid Leukemia. And it was too late for my father.

They attempted chemo to induce remission, but he was so far gone that his body was now only producing leukemic blood cells. He died November 12th, 2003 at 10:30am. He was aged 48 years and 5 months to the day.

Everything afterwards is all a blur anymore, but I remember it well. I felt bad because I didn't cry. I couldn't. It was all so surreal, it didn't feel like I was awake. I wanted it all to be some horrible dream that I could wake up from.

It doesn't feel like it's been almost ten years since his passing. I was only 25 when it happened. I feel like he and I had just gotten to a great place in our relationship and then he was gone. He was always a voice of wisdom for me. I could talk to him about anything and he always had great advice to give. I so wish I had that now because I could really use some good sage knowledge right about now.

Before I start to ramble, I'm gonna cut myself off and head to bed. Dad, I love you and miss you and think of you every day. Always will. Until we meet again...






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