Oh These Crappy Lungs

Today ended up better than it started. Before I even got out of bed this morning, I could tell I was already going to be short of breath again today. Great, I was hoping to have a better day. I got up and did my normal morning routine, made it to the chair by the bed and my O2 saturation decides to drop and I start to panic so here we go. I called my mom to "do something", she says "what do you want me to do" I said "call somebody". Okay, nurses and respirtory get in there and get me calmed down and my O2 back up by blasting me with O2 using the face mask instead of the nose prong. Whew, I made it through another one, but it shot my nerves! I was edgy the rest of the day and had to keep a close eye on my O2 so late in the afternoon I decided I wanted something for my nerves and the headache and the pain in my back from being tensed up all day. After waiting a good hour, I finally got the meds and another hour later I was feeling relaxed. My breathing was deeper and I felt better, finally. Just another day with crappy lungs. Gosh I hope this isn't going to be something I have to deal with daily. I've never been one to like taking pills that alter my mind, but in this situation I'll take whatever I can to get me through this ordeal. I'll deal with rehab once I can breathe again, lol!

SOB - It doesn't stand for what you think ; )

I am still short of breath. After the incident Friday ( see post below), I can't seem to get my air back. I haven't had anymore panic attacks, but I am still tethered to the short O2 hose so I can't leave the bed much. I've had to wear the O2 face mask also. It helps me to get higher liters of O2 without drying my sinuses out so much. I can't stay on it too long though because I am what you call a CO2 retainer. That is, I breathe in oxygen and expel carbon dioxide like everyone else does, but with my crappy lungs I'm not able to expel the CO2 like a normal person. Mine builds up in my body and if it gets too high it can kill a person, so it is a delicate balance of O2 mask and O2 canula. I'm trying to stay positive, but sometimes this disease just makes me so damn mad! I was feeling really good and hoping to maybe go home for a while next week, but now I don't know what the outcome is going to be. Just Breathe!!!

Taking My Breath Away..........

I have never been a person that couldn't handle stress, but when I can't get my breath it is panic mode for me. This is only the 2nd time it has happened and the doctors and nurses did a great job taking care of me. It started out this afternoon when I just started feeling short of breath and stuffed up feeling. My heart was racing pretty fast and I felt "on edge". My O2 sats was in the mid 80's and they usually run in the upper 80's to low 90's. I didn't say anything at the time just thinking it was the caffeine I had at lunch. After a couple hours and me getting up to walk across the room, I wasn't feeling any better and requested a breathing treatment. Afterward, my phone rang in the room and I was already sob and then I realized I had to pee so I cut the person off on the phone and basically threw the phone down and sprinted to the toilet, only I didn't make it in time and proceeded to start "right" before I sat down. Great! gotta clean that up. Well, then my pulmonary artery decides to spasm and when it spasms it clamps shut, shutting off the O2 to my lungs and I start heaving for air and turning blue. This is when the panic decides to start creeping into the scenario. I pulled the emergency help cord beside the toilet and when the person asked if I needed help all I could manage was "help me". That was all it took for people to come running into the room. There I was, sitting on the toilet turning blue, heaving my chest, and puffing for oxygen and not in a sexy sort of way, lol. They quickly turned up the O2 I was already receiving and I asked for a fan and it arrived. My O2 had fallen into the upper 60's to low 70's, not good. Somewhere in the chaos I managed to let them know to let the person on the phone know I hadn't died and to take a message and hang up the phone. It took about twenty minutes, two breathing treatments, and some calming meditation to get me calmed back down. That was enough excitement for one day. I was tired, had a headache, and just wanted to go to sleep. I survived another one. Whew! That was NOT fun! I can think of a million other ways to get attention in here and that ain't one of them!

Donate To My Lungs Fund

I'm not one to ask for charity. I've always tried to be independent, but sometimes a person just needs to get over it and realize it is okay to ask for help. I am currently waiting for my call to get my life back, which is, I'm waiting for my call for new lungs, in case you've just tuned into reading my blog. I decided to add a donate button to my page to help with travel/lodging expenses, etc. so any help will be truly appreciated. Some people may not realize how expensive a transplant truly turns out to be. It isn't just about the days leading up to the transplant or even the weeks afterward. It is a life changing surgery that will entail expensive anti-rejection drugs and numerous doctor visits for the rest of my life. I have good insurance, but even insurance doesn't cover everything. I am ready for this commitment. I just don't know if my wallet is, lol. Please do not feel obligated to help if you feel you cannot. The economy is tough for a lot of people now days and I wish my health could wait till things looked up, but sadly life doesn't work that way. God Bless You and Have A Wonderful Day!
Recycle Yourself, Be An Organ Donor!

All For Coffee.....

Today I ventured out of my room in search of coffee. I have a need for coffee when I am in the hospital more than when I am at home. I don't know why, it's just something I like when I'm stuck here. I've been trying to get out more to keep my strength up. I figured I could make it to the McDonald's that is located in our hospital. The only problem is, it is located a long way from my room, probably a good quarter mile if measured. I'm pretty stubborn so I decided to head out, just me and my O2 tank. I let my nurse know that I was going out for a bit and to the elevators I went. I got on the elevator and went down to the 1st floor where the main lobby is. That was my first rest stop. Good grief, it'll take an hour to get there at this pace. I sat down, got my breath, let my heart rate slow down, then I was off again, slowly. I made it about halfway there and stopped in the middle of a long hall and did the same thing I had done in the lobby, minus sitting down, and waited to calm down. At this point I'm thinking I should just go back to my room and forget it, but again, I am stubborn so I pushed on. I will not be defeated! I finally made to McDonald's and had to stand back from the order line to catch my breath. I almost wasn't even in the mood for a coffee anymore. I just wanted to lay down and cool off, lol. Well I made it this far, I might as well order it, so I did. I also decided to reward myself with an M&M McFlurry, hee hee. I got my coffee and mcflurry and found a table to enjoy my ice cream. I was thinking about my journey back and was wondering if I could find someone to carry me on their back, back to my room. I decided that was too close of contact with someone so I thought about asking someone to roll me back in a wheelchair, then I said what the heck, I made it down here I can make it back. Slowly, I made it back the way I came with my coffee in hand. I got to my room, sat down, cooled off, and enjoyed that cup of coffee even though it took a lot out of me to get it. Whew! Who knew a cup of coffee could be so darn tiring. I think I need to get a coffee pot for my room and save mcdonald's as a treat that my family brings to me when they visit.

Road Trip to Duke

It looks like I may be taking a road trip in the near future. My doc wants me to consider being listed at Duke University in North Carolina. Duke has a track record for having a short wait time on the transplant list. Apparently I'm too fragile to even go home now. I may never go home again. This is a reality that hit me last night. If I go from the hospital I'm in now to Duke, I may not ever come back home. It is a harsh reality. Scary, but true. It's not something that will keep me from going. I'm ready for my chance at a new life. The way my health is now is not living. It won't be easy for my family to re-locate, but it can be done. I've had my evaluation at the transplant center in Alabama which is in drivable distance from my home, but hey, if the average wait is 6 mo. to 1 yr. or longer, I may not make it till then. I think I'll take door number 2. As of now I'm just waiting to find out just when my chariot will arrive..............

Must Get Out!!

Well I've been sitting in the hospital room for over two weeks now. I finally got one of my doctor's to approve me getting a portable O2 tank so I could get out of this room! I am in isolation because of the crud in my lungs being resistant to most all meds. It is contact isolation so no one needs a mask. It is only if you come into direct contact with me, so people wears gowns and gloves only. I'm not going outside my room to spit on people, come on?! It felt good to get out of the room over the weekend. It felt kind of strange, but maybe that was because I wasn't used to walking any amount of distance. I had some adjusting to do. I was weak and tired. How am I actually improving my lungs with only antibiotics if I'm not exercising them also? I'm going to make a point to get out everyday now and at least make a loop around the wing I'm in.

I Just Want To Breathe!!!

I'm still in the hospital. My breathing seems to be on some kind of a re-lapse. It is shallow again and I feel like I can't cough anything up. The doctors have lowered my steroids, but are going to be uping them AGAIN. I don't know. They ask me my opinion of what I think could be done. Are you kidding me? Don't ask ME how. Isn't that why YOU went to medical school? I understand they don't know what to do at this point, except for a lung transplant, but they concentrate too much on getting someone out the door rather than letting them stay without feeling urged to leave. I'm here, fix me. I know Here is what I do know; I like being on the steroids for my breathing. I hate being on the steroids because of insomnia, weight gain, and an insatiable appetite. If I give you my opinion of what to do for me, give me more steroids! I'd rather be able to breathe than be skinny at this point. Ha. Ha. You asked. I know that won't happen. Steroids, the great drug that isn't so great for the body. I'm hungry and going to find a snack.......

Life As I Knew It

I thought I might need to put an update of what is going on with me, since I'm the one that created this blog for friends and family. :) I've just been reflecting on my life and wondering how did I get here? I don't mean in the hospital on Iv's, I mean for my CF lungs to be so bad that I am on a list for a double lung transplant. When I was in my 20's I used to always have the mantra "CF won't kill me, it will just aggravate me the rest of my life". I also said I never wanted to get a transplant. Back then I was working, spending time with friends and family, shopping, just living life. Now I am just existing. It seems like so long ago. It makes the decision to have a transplant much easier when you get to the point that your everyday life has come to a halt. Some of the things I miss is being able to visit friends and family. To be able to get out of my house is a treat in itself these days, but I don't have the energy most days. I save outings for doctor appointments. I miss shopping, even grocery shopping. I remember when I COULD grocery shop I thought I hated it. Now I long to have those days back. To be able to "run to mom's house". Although I never actually ran any step of it, I could jump in my car and go without worrying about becoming too tired from having to sit down many times, in the process of getting dressed, to catch my breath back even though I was wearing oxygen.

There are a lot of things I miss and I believe I will be able to do again. I may receive a call for lungs today and it may be a year from today and it may never come. No matter how this journey ends, I will have no regrets.............

VIP Treatment?

As the day wears on I am sitting here contemplating what does someone have to do or be to get VIP service when inpatient in a hospital. I understand there are many people more important than me, but at this hospital I should be considered a VIP patient everytime! I've been trying to get moved to another room since I arrived here Wednesday. I have been complaining about my room being HOT. I have never had a room quite like the sauna this one gets to be as the sun falls in the Western Sky and beams right into my room. I finally got one of the nurses to bring me a fan to help cool it off in here. For anyone who has ever had serious breathing problems knows what I mean when I say "my thermostat is stuck on high". I am always hot so when I'm sick and my breathing is even worse than normal I want to be somewhere COLD. This room is not it! My primary doctor came to see me this evening and checked to see about changing rooms (since there is no word on when I'll be getting out of here). Turns out, there are empty rooms on my floor, but no rooms "available" because there is a VIP on this floor. WTHeck? As many years as I have had to come up here to the doctor, stayed in the hospital, and how much money has this place made from my insurance companies over the years? Oh yeah, I think I should be considered a VIP. Can someone please block off the rooms around me so I won't be disturbed, lol!

My World Today

Well I have managed to stay out of the hospital for two months now, but my luck ran out Wednesday, the 5th. It's no surprise. I don't even fight my doctor on the subject anymore. When I was healthier and working I would refuse to come into the hospital. I would take IV's at home and take them to work with me, no problem. Now, I'm just thankful to be able to get dressed everyday without losing my breath.

I remember when I was younger and in the hospital I would get so angry and hostile with the staff in the hospital when I was inpatient, the number one reason being sleep disturbance. Now that I am older and have spent much more time in the hospital the past 8 months than I used to spend in as many YEARS, it has become quite comical to me. I know us CFers have all experienced it to some degree at some point, but last nite was the nite that would never end. I went to bed at 12, which is my normal time even at home. At 1:30 am I had an iv antibiotic given to me, no problem, didn't have to be disturbed too much. Then at 2:30 I was awaken to do a breathing treatment. Come on, I'm breathing fine without it. If I take a breathing treatment in the middle of the night then I start coughing and can't go back to sleep! Then at 3 am the nurse returns and starts another iv antibiotic. To top that one off, the nurse also had to draw blood to check the levels on one of my meds. At some time in between all of the other in and outsI know someone came in and checked my vitals. Lets see, around 5 the resident doc stuck his head in the door to get a report for the big dog (doctor) that comes around later with the whole team of little ducklings (interns) following behind him, lol. I did get served breakfast early today. I didn't even know when they brought it in, it was on my tray when I got up at 7:30 am.
{{Yawn}} I think I'll try to get a nap before everyone starts working their way back down the hall again.