CF DR update

So I had my usual every other week appointment with my CF doctor (now that I'm on IV's and the transplant list, they like to keep a really good tab on me!). Nothing really new except that I am finally going to be set up with an insulin pump, something that has been talked about for a few months now, until the whole getting on the transplant list took precedence. I'm still on 6L of oxygen, except this past week I feel like at certain times I need even MORE than that to feel comfortable, especially if I start coughing and can't catch my breath. I've been having really bad pain sporadically in my chest, I think it's more pleuritic, but nonetheless it HURTS and its kills when I have a coughing attack. I was prescribed Lidocaine patches, which so far are doing nothing! Percocet helps, but I think with the impending transplant they don't want my body to be used to a certain amount so that post-surgery I'll need even higher doses of pain meds. I didn't even do a PFT at the office. I have my transplant appointment next week where I need to do another PFT, EKG and 6 min walk test, so I think that's good enough. My entire body has been aching lately. I don't know why. It's my chest (obviously) and my lower back (I think that's from carrying the 6lb liquid oxygen backpack around whenever I am out). I've been having random feelings lately about what if I don't make it to transplant. I've mentioned it to my mom, but everyone tells me I'm crazy and that it's coming. However, it's a REAL possibility. There are so many people who die waiting on the list. I know that I need to be positive, but some days it's just REALLY hard.

Still on IV's

I went to the doctor's the other day and of course not much has changed. She said that I am definitely heading in the right direction and that my lungs sound much better now than when I was in the ICU two weeks ago, but they are still not great. Let's face it, that much I knew. I feel horrible still. For a few days I was able to sit at rest without oxygen but all of a sudden I need it 24/7 again. I am so exhausted I find myself sleeping whenever I get a chance, which isn't often with the medication schedule I am on. My weight has fallen again to 97 pounds which isn't horrible - but right before this hospitalization I was actually up to 110! I was able to wear all of my old jeans and it felt amazing. After my hospitalization in July/August I had slipped down to 88 pounds and was wearing a size 12 from the little girls store Justice. I am going back to the doctor again on monday and we will do a PFT, XRAY and decide whether or not to stay on IV's. If I continue, I will most likely look into going on short term disability for work, which is the last thing in the world I want to do. However, I know that I really need to just think of myself and put my health above everything else. I know what I need to do, it's just so hard when the majority of your life CF never interfered and now that's all it seems like it's doing. Well that's it for now, I am going to try and get some sleep. Good night all!

Frustrated ..

So my friends it's super bowl sunday. While I am not an avid football fan, I must say I usually enjoy watching the game for the funny commercials, and of course the awesome food! I was supposed to go over to Joey's house and watch with his family - but am home instead. Last night I actually did my meds a little early so I could get a good night sleep. Well after laying in my bed wide awake for about 3 hours I decided maybe I would be more comfortable on the couch. My puppy Chloe followed me downstairs and laid next to me. I don't know if it's the steroids or what - but my head felt like it was so tired and the rest of my body felt like it just couldn't stay still. After a few hours of getting up and repositioning myself even my puppy got annoyed and slept on the floor next to me. At 8am when my alarm went off to start my morning meds - I was STILL awake.
Tomorrow marks three weeks on IV's (TRIPLE antibiotics, steroids and fluids PLUS two oral antibiotics). While I am healthier than I was in the ICU just a few weeks ago, I feel I am really lagging on the recovery part. I have managed to go parts of the day without wearing oxygen and feel okay, but if I walk even 10ft I get so short of breath and need oxygen immediately. My o2 sats drop to the 80's and my heart rate sometimes hits 160-170. This is NOT OKAY.
I really wanted to return to work this week but I don't see that happening at this rate. I am so torn whether I should just go out on disability or maybe give myself one more week. Problem is, I've already been out three weeks AND used all of my remaining vacation and holiday time. I am in the negative when it comes to sick days.
I don't know if maybe I'd be better off back in the hospital, where I don't have to worry about hooking myself up to all of these medications at crazy hours or whether I should keep fighting from home. I'm just so exhausted and I want to feel better.

Study drug visit, IV antibiotics, and Bone Density - OH MY!

So yesterday I headed into the city for another Vertex study drug visit. The visit consisted of PFT's, blood work, EKG, a sweat test then I was given a meal and 30 minutes later I took the Vertex pill. I've been sick for a few weeks now with this lingering cough and I'm on vacation from work for a week so my doctor and I decided to start home IV's. I'm definitely not sick enough where I need to be hospitalized. This is more of a "tune-up" I would say. So my sister accessed my port the other day and last night I began what I hope is only two weeks of IV meds. Here's to beating the change of weather and staying healthy!!

Yesterday after the study visit was over, I stayed and talked to my doctor. There are a bunch of new things that I am going to begin in hopes to improve my lung function and over all well being. For starters, I am going to start acupuncture again and make sure that I make it there every week so I can feel the full effect. I started last year - but my insurance at the time didn't cover it - and to be honest I couldn't afford what it cost plus the hassle of getting into the city every week. I did feel it helped though, so I am going to give it another go! My doctors offices are finally moving across town into a new building and she said there's an amazing gym there and a fabulous pulmonary rehab that I would probably benefit greatly from. I am going to try and schedule both acupuncture and pulmomary rehab on the same day so I can just make a day of it in the city once a week!

Next week I am finally going for a bone density scan. I regret that I haven't gone earlier because I really feel that I have some issues now. I have random bouts where my hands and feet just lock up. If I'm holding something tiny, such as a pen my hand usually drops it. Whatever this is - I want to get to the bottom of it - because it hurts like a bitch when it happens and it can really affect my career.

Oh and I ordered the new washable vest, in PINK of course! Can't wait til it's here - I'll put up some pictures!

Did I just jinx myself?

I find it rather odd that today I am on the phone with my doctor discussing my very gross, thick, green mucus when just about two weeks ago I was posting about how good I was feeling lately. I'm not superstitious by any means - but maybe I did jinx myself. My 02 levels are down again - 90% on room air and my heart beat is fast (138bpm) and my cough is, well it's productive and definitely needs some high potency medications.

I am actually on vacation from work starting tomorrow for an entire week. I guess it's good that I am going to nip this in the bud and not have to take anymore time off from work. I also feel like maybe someone is playing a trick on me. Like they knew I had a weeks vacation coming up - so instead of letting me just relax and enjoy - they had to make my lungs revolt so that I have to pay very special attention to them while on vacation.