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.