Tag Archives: hospital

Coming Home

23 Jul

I haven’t updated in a little bit because things have been a little crazy. First, they’ve been trying to narrow down what I have and they have concluded that it’s a virus. I won’t go into detail about what it is for personal privacy reasons, but basically the only thing they can really do is treat the symptoms and let the virus run its course so to speak. Then, on Saturday, I was airlifted to a hospital closer to home. My mom works in affiliation with this hospital, so she was able to pull some strings and get things rolling faster. This does hit one of my Bucket List items, which was to ride in a helicopter. Unfortunately, I was sleeping the entire time, so I didn’t get to appreciate it properly, but I never made any specific stipulations on my actual Bucket List regarding being awake, so I’m counting it. When I got to the new hospital, things got crazy. I coded. Now I don’t know what all went on during the code, obviously, but I have some nice bruises and burn marks to remember it by. I got put on a vent for a short period of time, I was taken off of it that same night and just had the oxygen mask. Thank God. It was funny because I was toying around with the idea of DNR, and had I signed one of those puppies…well this post would be a little different. Nonexistent. But after all of that, I desperately wanted to go home and just sit outside. I’ve been cooped up inside for so long, I just wanted some sun and air and…non-sterile smells. I wanted to sleep in my own bed and maybe be able to sleep through the entire night. So my mom arranged for Home Health care, because she’s a Get-Things-Done type of person, and a few days later I was discharged into their care. It’s so so nice being home. My bed has never felt better. And it’s kind of a relief being here with my parents and my brother. We went to the Gardens and I took some great pictures. We walked around, and I used the wheelchair and oxygen only when I got super tired…which didn’t really take too long, but the point is that I was just walking around the gardens being normal, doing normal things with my family, and that made me so happy.

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Misery

18 Jul

Well…I have some kind of infection, the doctors haven’t figured out what yet, but they’re thinking a virus because the antibiotics haven’t knocked it out. My temp is still pretty high, and they’re using ice packs for it, and they’re freezing my butt off. I had some seizures, too. I’ve been having some pretty intense bouts of vomiting, and I can’t eat anything by mouth, so I’m on TPN again. I’ve been a little jaundiced, and I’m not having any urine output. Fluid is building up in my lungs, making it hard to breathe. I still don’t know why the stomach pain is so bad or what exactly is causing it now, but they’re giving me morphine every few hours, which is odd because I normally get fentanyl or dilaudid. But they’re pretty much keeping me knocked out all day, because when I wake up, it’s pretty much just miserable. Naturally, my mom freaked out and called a bunch of doctors she knows, and they’re trying to figure out what I have. My family caught a flight and they’re here now. My mom is trying to get me transferred home. Through all this, I did get a guy’s number, though. He was visiting the person next to me and said my smile made his day. That kind of made my day. There was this nurse, though, that would not smile for the life of him! I tried to get him to crack a smile because he just looked so miserable, but he just absolutely would not smile. Oh well. I tried. I called some people today and talked to them for a little while. I wrote some nice notes to people and listened to some music when I wasn’t sleeping. Today was difficult, but I tried to relax.

Aside 18 Jul

Today has been so scary and emotionally taxing, but I’m getting transferred back home soon, so I’ll get to see my parents and my brother.

I Definitely Overdid It

15 Jul

The stomach pain is worse now than before, and my fever got so ridiculously high that I was delirious and needed to go to the hospital, but couldn’t quite call, as I forgot the number for 9-1-1 >_<. I did manage to call someone who called for me. I was seeing things, but I really don’t remember it, and I guess I passed out. I don’t remember getting to the hospital, but I woke up in the hospital covered in ice packs and freezing my little patootie off. Even the saline was cold. I still don’t know what is causing this fever, but it needs to cut it out.

I Left.

12 Jul

Last night I went to the ER because I was in so much pain, I was vomiting blood, and I had a ridiculously high fever of 104. They were able to stop the bleeding, reduce the pain, and bring the fever down to 102, but the wanted to admit me. They put me on broad spectrum antibiotics until they figure out exactly what type of infection we’re dealing with here. But you know what I did? I left. I just…walked out. Enough of this crap. I wanted to go home. My friend, Kristi, is coming to visit me today and I wanted it to be a visit at my apartment, so I left. I’ll just take a bunch of Tylenol and hope my fever goes away, I guess, I mean what can you do? And I went to the pharmacy, I have antibiotics that were prescribed, I’ll take those. I want to be in my own bed, puh-lease! For at least a week, damn! Is that too much to ask? Seriously? It’s my birthday this weekend, can’t it please just be good, please?

I really thought I was a goner last night. I panicked. I get annoyed when people try to sell me on bull. I know miracles happen, I’ve been praying for one. But I also know that God created doctors and scientists who come up with medicines, and He made science, and these people are pretty smart. They may not always be right, but they’re right a lot. I hope for the best, but I also prepare for the worst so as not to be caught off guard. Few people will let me talk about it. They keep telling me I’ll be fine, but you know what? I’m not fine. I have a legitimate fear that I will die from this, and I feel like people are invalidating my feelings. Everyone acts like no that could never happen, not to me. I don’t want to die, but maybe I will, maybe I won’t. Hopefully I won’t, but there are two outcomes. I guess this is why I need a counselor. People say that we’re all going to die, and that I’ll die eventually, but I sure wasn’t planning to come this close in my 20s. There’s blood all over my bed. Last night was bad. I wish I knew what God’s bigger plan for me was. Everything is so uncertain right now. I don’t like this constant uncertainty.

Home Health Aide

10 Jul

I met my home health aide today. She’s going to come twice a week for now. She’ll do things like vitals and blood draws, helping me with personal hygiene stuff, maintaining my mobility and independence as much as possible with some exercises and stuff, pain management (super important), medication management, taking me to appointments, helping with food/nutritional needs, changing my bed sheets if I need her to…that one was a surprise, and keeping up with my medical record stuff so she can keep in contact with my onc. She seems really nice and I feel like I’ll enjoy spending time with her. Through the same program, they’re also offering me some other services like pastoral services, a physical therapist, their own social worker and patient advocate, a counselor, which I’ve been in need of even though I was turned off from the idea. I hope the counselor is good and that I click with them. I also hope they don’t try to give me any diagnosis of a problem that I don’t have like the last one who said she thought I had OCD. I swear I don’t…having some perfectionist tendencies does not make me have OCD. They offer some other stuff, too, but it was a lot to take in at once. Some other stuff is like bereavement and blah blah blah, but…yeah. I think I’ll benefit a lot from this extra help. It should hopefully keep me out of the hospital so often, goodness gracious! Ugh. And I think it will give my family some peace of mind knowing that there’s someone here to specifically help me.

Clinical Trial

9 Jul

I talked to my onc today. Good news, I’ve been discharged! I’m also getting a home health aid through Hospice. My onc is working on a clinical trial that applies to me and that I qualify for…and it’s enrolling now, and I decided to go ahead and let him enroll me in it. My mom would really appreciate it. It’s in phase II. They’re trying Sunitinib in combination with Gemcitabine, which means I’ll be back to getting chemo through an IV and not just oral chemo, though Sunitinib is an oral one. I’m not quite sure how I feel about this, but I figure I have nothing to lose, right? Well, nothing but potentially quality of life. But quality schmality (sarcasm). It’s good, because there’s usually something that excludes me from clinical trials, but this one seems to be a little broader, so I qualify for this one. The trial is at the hospital that’s a little further, but it’s only a 10 to 15 minute drive away as opposed to the one I usually go to, which is 4 blocks away. It’ll be worth it, though. At least there’s something new to be hopeful about.

Hospice?

5 Jul

I have some good news. Once I talk with the nutritionist, I’m getting discharged! My heart is looking good, and since I went yesterday, and my O2 sats are up, and I took a couple of laps around the unit, they’re gonna let me go! That’s really good, that’s great, but before that, I have a meeting with my social worker, Mags, and my patient navigator to talk about the benefits of Hospice. I talked with my onc already about the possibility of stopping treatment, but it’s something I’m going to have to think about for a while. I feel like Hospice would be super beneficial, but I can also think of some people who may be kind of upset if I choose to do that. Luckily, it’s not like I’m being pressured into making any kind of decision. I can think about it for as long as I want. It’s gonna take a lot of thinking and serious conversations, so I’m gonna talk to my parents about it in person when I go home. Also, Hospice has more than just a facility that you can go to, they have home health nurses and lots of other things that I’m gonna learn about today, so there’s that.

Painsomnia

3 Jul

I’m up again at the butt-crack of dawn because I can’t sleep. Hospitals are awful for sleep, and pain is hard to sleep through. The sleeping meds wore off, and it’s about time for more pain meds…I can tell. I have a fever and my blood pressure is really low now, go figure. My O2 sats are low, too, so more oxygen for me. Can’t really leave until that’s under control…and until I go…who knows when that’ll be. The physical therapy lady should be coming in this morning and making me do some laps, which I’m actually not looking forward to even though I really do wanna get out of this bed. The list of things I can’t eat has gotten even longer, so I mostly just have a short list of things I can eat for now. It’s really just liquid things, so by eat, I mean drink or slurp or however I choose to ingest it. That’s about all for this morning report.

Tired

18 Jun

Is this the fatigue they warned me about, the Ambien not wearing off as fast, or am I just more tired than usual? Not really sure. Either way, I’m incredibly tired. It was a huge effort to hurl myself out of the bed and into the shower this morning. I almost passed out in the shower, so I had to sit down.I hate my naked skin touching the shower, so this was a big deal to me. It was hard to breathe, and I was shaking. If the shower wasn’t on, I probably would have been sweating. Then, I threw up right there in the shower. Gross. I wish I could just curl up in my bed and forget everything ever at least just for one day. I also wish I wasn’t so cold right now. Why is it so cold in here?