It's nothing bad, I am just going to tell you exactly what happens when I go to the hospital and if it's something you can't take don't read any further, I have also added a picture of me in ICU when I look my worst so I consider it bad!
It was a beautiful Saturday morning did all the usual things (which isn't much) thinking about how nice my health has been and that I haven't been in the hospital yet this year it had actually been over 5 months since I was last in the hospital, a record of late, and I honestly started thinking maybe just maybe I was getting a little better, maybe I was actually going to get a little better! I knew I would never get back to where I was but I always hoped that maybe I would get a little better.
I took the dogs outside like usual, hooked them up to the leash in the yard so we all could enjoy the sun, sat down with my Sudoku book and thought, 'forgot the phone' should go get it, maybe in a min. then, out of no where (like always) I get this feeling, and only those who have experienced it know what I'm talking about, I thought, 'NO, this can't happen' I walked inside to get the cell phone and wait in the bathroom for what I knew was going to happen, I grabbed my phone, when I have a hard time breathing I usually have to go to the bathroom, weird connection I don't know why it happens so I sat down and started going (#1 and #2, sorry graphic I know) then, I coughed (again only those who have experienced it know) my mouth filled with blood, I stopped wiped quickly and then started coughing up blood in the sink, I called MH and told him to come home now, he already knows the drill, he knows I'm serious he knows what's going on I don't need to say more.
I don't know if it was because it had been so long since I had Hemoptysis (coughing up blood) or what but this time I felt different, more panicky, I also still had to go to the bathroom, I couldn't hold it in but I was still coughing up blood so I couldn't sit on the toilet, I actually started going in my pants!!!! it was the weirdest thing! I just knew I was in more serious trouble then I thought if I couldn't hold that etc.. so I called MH back and told him I was thinking of calling 911 (we have never done that in all the times this has happened) I asked him what I should do, I also just wanted someone there in case I don't know I collasped or something! I called the people upstairs but the line was busy (my husband was calling them at that moment) he thought I told him to call 911 so he called them because he didn't know our new address yet, they also came down and then my husband came home in record time and then just a min later the paramedics and fire people show up, by the time MH got home I had stopped coughing up blood I was just standing there making sure it had stopped etc... since the paramedics came shortly after I didn't have time to tell my husband what happened especially the 'accident' part.
The paramedics wanted me to sit in a chair, I thought about it for a min. I didn't want to sit down but I also didn't want to change right then and I also didn't want to stand anymore, if I didn't sit I knew they wouldn't leave me alone, I sat down! Have to tell them the history, they didn't know what Cystic Fibrosis was (don't blame them it's not common) blah blah, asked if I wanted to go in the ambulance to the hospital down the street I told them I have to go to the hospital an hour away because that is where the CF clinic is etc... they know more about my condition, health have dealt with me a lot etc... they advised to go in the ambulance since it was a long drive but it was up to us, I sort of didn't want to because I wanted to grab things but I also knew this wasn't like all the other times, I said okay (also because I've never had an ambulance ride so why not? even in these last days I'm still experiencing new things). I told my husband I just couldn't go to the hospital with pants like mine no way so we went in the bedroom and changed, oh my, all I can say is my husband is one amazing man, I am so so blessed to have him.
MH wanted to take a picture of me on the stretcher I said no, I don't want a picture of that, although I do kinda regret it. I did want to take a picture of inside the ambulance but I didn't have the camera or my phone on me. The ride up was boring, the siren is annoying, they really don't go that fast, they took the wrong road, you get a little car sick from looking out the back! Got there safe and sound so I'm glad.
Same old routine in the ER, long and you have to tell your story over and over and over, I have a letter from my Dr.'s that tells them to just take me to the ICU and that I will probably need to be intubated and embolized blah, blah... that's what happened, I don't want you to think I take it lightly, we know that with each hospital visit and especially intubation my chances of recovering get slimmer and slimmer, especially with this intubation I was a little nervous wondering if it was going to be the last time I saw MH or not. They finally did my favorite part...put me to sleep! they intubated me and embolized me that night, sorry when they embolize me they go in and put coils in my bronchial arteries where they think it is bleeding to clot them off and hopefully stop the bleeding. So now I have been intubated about 6-7 times and embolized 14 or so times.
Had a rough night that night I remember waking up and asking for my iPod so I could listen to music, they couldn't find it (MH had taken it home so it wasn't left there out in the open) so my nurse brought in a radio and turned it to country music (she asked me what kind) I don't know if it did any good but that was sure nice of her. They weaned me off the pain meds that made me sleepy that morning so that I could breathe on my own so they could extubate me, that is the worst part I tell you, so much pain and discomfort, not to mention that you are so so hungry! You have a big tube down your throat and it makes it hard to swallow and breath, they told me they would slowly move the machine down and that I had to breathe on my own for half an hour then they would pull the tube out, since I have done this a lot I knew that once the tube came out I could breathe much better but it still tested me.
That time is such a trying time, the whole time I thought what do the apostles and prophet do, how do they get through their pain and suffering? they have it, they are mortals still, some have experienced severe physical health problems, how did they do it? Even though you know it will get better it still is very hard to get through, and there was definately times that I told MH I didn't know if I was going to be able to get off the machine because it was really hard to breathe! Well like everything else it actually took an hour and a half to finally get the tube out!!!!!!! (makes me so mad, don't make promises in the hospital! that just hurts patients more!) yes it did help to get it out, I was breathing better, but still very painful and uncomfortable, and yes very very hungry.
They let me eat some applesauce/saltines/and jell-o that evening, applesauce never tasted soooooo good!!!! I ate four containers, I don't think they realized how much I was eating because I got some before the nurse shift change and then after plus I had one of the nurses aides get me some, hahaha, I also had two glasses of juice and two jell-o's oh and 6 packs of saltines (you know the ones that have two crackers in them) what a wonderful dinner!
Another bad night (okay there never is a good night in the hospital I will stop saying that). I hate being so tired, but then when you don't feel good it really doesn't make a difference. They moved me out of ICU on Monday that was nice, less wires a little more freedom a much better view. Things were going well and I started talking to the dr.'s about going home on tues. (got to start early I always say) well, that night I coughed up more blood, called MH he came back, not much to do but hope that it was leftover or something, if it happened again they would probably start all over with the intubation and surgery again.
At about 3am I turned over and I think I felt a little pop but I definately felt my lung start to hurt really bad, I couldn't move to the side etc... I told the nurse, I think I even specifically called her to tell her (and ask for pain meds at the same time) but on a scale from 1-10 I gave it a 9, which I never do, even when I'm coughing up blood I am never a 9, so if you know me at all that would have been a red flag, I told the dr. in the morning and the thought occurred to me that I should get an x-ray, didn't mention it to them, as the day wore on it was getting harder to breathe, I was getting pain meds so the pain wasn't as bad, although I still kept it at a 6-7, but it just started getting really hard to breathe, you could totally tell I was panting etc... so finally at 3pm they took an x-ray and then boom things started happening, I had Tension Pneumotherax (a life-threatening crisis) what had happened was a cyst burst and air was pushing my lung which in turn was pushing my heart over so I had air filling between my lung and the lung wall, so they had to put a chest tube in asap, my husband saw the x-ray and he said it was incredible the dr.'s were amazed at how far over my heart was, not good.
I was nervous about a chest tube, I had one after I got my lobectomy last feb. but they put it in after surgery so I wasn't awake! but they did a great job, couldn't have been better, afterwards I did feel a release and could finally breathe deeper but then I had a sharp pain! So I traded in my suffocating pain to a sword in my side pain! I could breathe better but at a big price! they hooked up different pain meds, the one with the button I had to remember to push every ten min. that pain med. was better but I didn't like that I had to remember to push it a lot. Finally started feeling better, eating good, sleeping bad, they couldn't give me any sleeping meds while on these pain meds, and can I just tell you how uncomfortable the beds are! If you have a friend that is going to be in the hospital for awhile please go to wal-mart and buy them an egg crate, they are cheap and make a HUGE difference, also some cheap pillows because the hospital ones are plastic and make you so sweaty (so is the bed that is also why the egg crate is so nice, then you aren't sweating all the time) I finally wised up and asked my parents to get me an egg crate and pillow two nights before I left and it made a HUGE difference, thank you so much to them.
Like my one post said I even got a computer two days before I left, now I know how to get one and next time hopefully will get one sooner (see again, still learning something new). Friday they clamped the chest tube off to see if I would be alright and did x-rays, they took the tube out that afternoon but wanted to keep me overnight just to make sure (even though I really wanted to come home I knew that was the best thing) they always take forever to discharge you and especially on sat. I didn't get out of there until the afternoon, they wanted another x-ray to make sure there wasn't more air etc... I wanted it just as much as them because I don't want to go home and have problems breathing but come on, move it people!!! Also on friday the day it was getting hard to stay I got a card 'or good mail' from a fellow blogger, it lifted my spirits so much, she didn't know I was in the hospital it just happened to come at the right time, thank you so much. Also my sister didn't send my birthday box on my birthday but it happened to be a good thing since we ended up moving and then the day she sent it I went in the hospital but that ended up being good because I got it in the hospital, I have never gotten a package while in the hospital it was so nice!
I don't mind the hospital when I am sick and really need it, when I couldn't breathe I didn't mind being there with a chest tube in, but when I am telling the nurses when to bring my meds what to do etc.. then I feel I need to go home because I take care of myself there anyways, the only thing the hospital is doing for me then is making me lose weight and sleep, none of which I can afford!
It's still been rough at home I lost more lung function and ability to do stuff, have had trouble sleeping, we just recently tried the bi-pap last weekend, that hurt my face soooo bad!!!! I took a two day break to see if it really did help me or not, I will try it again tonight and conclude the verdict.
Everyday is a blessing, I'm grateful so much for my husband and family for their support and love. I love reading blogs and wish I had more blog friends, wish I was a better blog friend! I am trying to post better and more personal on my blog so you can get to know me better, well you can't get much more personal than this post!!!
Here's my ugliness!!!!!
2 comments:
Ro, you are so amazingly strong! I know that these tests arent fun but it is the refiners fire. You are so much more incredible than you even can comprehend. My prayers are with you.
I so sorry you have to go through all this pain. Please call me. I dont have your number any more. Im here local I could help with something I sure. Please call.
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