Feeling good

I saw the doctor on Friday, and my numbers were actually slightly up from last month. I’ve also been feeling noticeably better and a little less short of breath recently. We usually do 2-3 weeks of IV antibiotics, but since this didn’t seem like a full-blown exacerbation and I was feeling decent, we decided to set me free. The nice thing about the port is that setting me free is a far less weighty decision, because if we decide I need more hydration or antibiotics we can easily re-access the port and resume treatment at any time. I am SO glad I decided to get it!

I’ve been feeling pretty good for me, and have been walking and tolerating activity better than I was a few weeks ago. The biggest issue right now is exhaustion. I’m still on prednisone, which has been making it difficult for me to stay asleep. And of course I didn’t sleep well while on IVs, because I had to run infusions every 8 hours. I recently realized that between hospitalizations, rounds of home infusion, and prednisone, I haven’t gotten a full night’s sleep on any sort of regular basis in 2 and a half months. I’ve also been having uncomfortable bloating due to the prednisone, which isn’t helped by the fact that prednisone is also giving me the munchies. So I’ve been exhausted and uncomfortable, which is super fun. Fortunately, we finally started tapering the prednisone down this week, and hopefully things will get better as I move to lower doses. Unfortunately, we have to taper very slowly; partially because I’ve been on it for so long, but also because I have a history of falling apart as soon as the prednisone is stopped. Here’s hoping it goes better this time around.

I survived my first day back at pulmonary rehab! More than survived, actually; my heart rate was significantly lower and more stable on Monday than it had been the previous weeks. We’re definitely easing me back into things, but I am feeling better and expect it to go well. And hopefully I won’t cause any more dramatic scenes any time soon!

Happy birthday to me

On my 30^th birthday, I wrote this: laughteristhebestchestpt.blogspot.com/2009/02/on-cystic-fibrosis-and-birthdays.html

Nine years later, things are a bit different. I’m a little less triumphant, and a lot more tired. But I’m still here, still moving forward, still laughing, and squeezing as much living as I can into the space around the medical drama and new limitations. And always, always proudly proclaiming my age, refusing to hide from it, and embracing the magnificent blessing of every single birthday.

Next year will be a big one! So many people hide from 40, mumble it under their breath or amputate a few years in embarrassment. NOT ME!!! I want to have a big blowout birthday bash! It occurred to me recently that all too often people only make the effort to get together for a funeral. What a waste! If there’s gonna be a great big reunion with all my friends and family, *I* want to be there for it! So this is your official announcement to start planning for next year. I haven’t figured out what I’m doing yet, but I would LOVE for some of my more far-flung friends to come celebrate with me. I don’t care when the party happens, as long as I can fit in as many of the friends I never get to see as possible. Far-flung friends, please let me know general time frames that could work for you so I can find a time when the most people will be available.

Feel free to suggest venue ideas. I’ll need to be close to Cherry Hill/Philadelphia, since I can never predict what my health will be like. And I’d like to do something more fun than just a meal if possible, but also not too loud so I can actually talk to people. I also obviously can’t really afford any of this, so if anyone wants to contribute to the cause definitely let me know.

I just finished one birthday and am already looking forward to the next one. Here’s to a full year of joy and celebration!

Home!

Home at last!

Almost there!

We’ve reintroduced two of my nebulizer meds and things are going well, so as long as I remain drama-free overnight I’ll be able to go home tomorrow. It’s tricky, because on the one hand they want to hold off on meds and treatments that might irritate my fragile airways, but on the other hand I need those treatments to clear out mucus and prevent infection. I actually started to get more congested after just two days off my regular treatment regimen. I’m still withholding some treatments until at least Sunday to give everything more time to heal, but I’m already feeling better with the two meds we added back in. I’ll be on an IV antibiotic and fluids for the next week to reduce and prevent infection, and I definitely need to take it easy and be careful for the next few days, but I am very much looking forward finishing things up in the comfort of my own home!

E-A-G-L-E-S EAGLES!

I may not be able to go to the parade, but thanks to Katherine I can celebrate right here! I applaud her perseverance, as finding anything Eagles green or football themed yesterday was no small task! We're ready to watch the parade from the comfort of my hospital room!

Drama

Well that was dramatic.

Overall, things have been holding steady the last few weeks. I couldn’t quite get my health back to where I was a few months ago, but despite the ongoing fatigue, elevated heart rate, and shortness of breath, I’ve mostly been able to manage daily living activities and chores as well as get out and socialize a bit. I’ve been working on adjusting to my new baseline, figuring out my limits, and learning how to accommodate them. Obviously I would love to feel better, but I’ve been getting by and doing ok.

On Monday I went to pulmonary rehab and had a typical session, though I was extra tired after being up late celebrating the Eagles Super Bowl win the night before. As soon as I got into my car to go home, however, I suddenly started coughing up blood. I almost always keep a specimen cup with me in case of bleeding to keep track of how much I bring up, which is important information for my doctors. I usually only bring up 10-20 mL, maybe 30 mL if it’s a REALLY bad one. But this was much worse. When I’d filled half the cup with no signs of stopping, I decided I needed help, and went back to pulmonary rehab. They were predictably freaked out and called an ambulance, which I pretty much expected. Fortunately the bleeding slowed down right after I got back inside, and had stopped by the time the EMTs arrived. Unfortunately, I had coughed up 85 mL of pure blood within about 5 minutes, which was pretty scary.

I called my doctors, and they said that much blood is an automatic ER visit. Since the bleeding had stopped, and the ambulance could only transport me to a local hospital which would not be able to cope with the intricacies of CF, I decided to have my mom take me into Philly so I could go straight to HUP. Unfortunately, the ER was jam packed, and despite my Super Dramatic Cup O’ Blood it took almost 6 hours just to get out of the waiting room. Then it was nearly 6 more hours to admit me and get me into a room upstairs. After a long, hungry, exhausting, and exasperating night, I finally got to my room at 6am and grabbed a few hours of (interrupted) sleep.

There isn’t really much they can do for bleeding, unless it’s extreme and/or won’t stop, in which case they have some fun and exciting intrusive treatments they can offer. Since my bleeds have all been self-contained, we aren’t going there. Right now they’re mostly monitoring me, since I’m at higher risk for an uncontrolled bleed right now while things heal. There was some talk of a bronchoscopy to go into my lungs and look for trouble spots, but they’re holding off on that unless I have another bleed in the next couple days. We temporarily suspended some of my daily treatments to prevent additional irritation to my airways, so the goal for tomorrow is to start re-introducing a few and see how I tolerate them. If I can get back to my regular treatment routine without incident, I should be able to get out of here within the next few days. Fingers crossed!

I was seriously considering going to the big parade on Thursday, but clearly that’s off the table now. It’s probably just as well, since from all reports it’ll be a crazy mob scene, and I can’t imagine trying to maneuver the wheelchair through that chaos would go very well. I am very grateful, however, that I got to have a great weekend filled with friends, family, and fun before all the medical drama went down! And the hospital staff enjoyed my still-green Eagles hair, which I didn’t have a chance to wash out before being admitted. It was getting pretty gross so I washed it out today, but maybe I’ll make an Eagles themed Pole Person to replace it!

Speaking of Pole People, enjoy the latest additions!