Clinic Recheck #1: One More Week of IV Antibiotics

Hello friends. 

I’ve been out of the hospital for about 10 days and the transition to home was much more difficult than I expected. I knew that I would be responsible for administering my medications, but I did not realize what a challenge every single other thing would be. 

Here’s my “perfectly adherent day:”

6 am - IV zerbaxa 

9 am - IV meropenem; albuterol/saline nebs and airway clearance; Advair inhaler; morning pills; sinus rinse; breakfast insulin; long-acting insulin 

2 pm - IV zerbaxa; lunch insulin; vitamins

9 pm - IV meropenem; albuterol/saline nebs and airway clearance; tobi neb; Advair inhaler; night pills; sinus rinse; dinner insulin

Other - EAT, exercise, secure portable oxygen, feed and pet cats, clean my body, change clothes, keep my kitchen clean, refill meds, work on disability paperwork, text friends, talk to family, schedule appointments, stretch, rest, relax… blog. 

Take the perfectly adherent day, which has not happened a singe time since discharge, add in a smattering of “other” tasks that need attention, but which I have not had the attention to devote to them, and you will quickly see how I have had not the time, energy or (frankly) the inclination to update my blog. I have one more week to go on these two IV antibiotics.

Symptoms

My main symptoms right now are still shortness of breath and fatigue. Even by the short trips between rooms in my house, I can tell that my breathing and stamina are a little better every day. However, they are merely the first grains of sand falling through the hour glass - I’ve fallen so far behind, become so deconditioned from six months ago that I’m constantly reminded of how long, slow, tiring and frustrating the journey before me will be. It’s too easy to minimize small progress, but that’s my lesson to learn right now: Stay focused, stay present, and keep trekking.

Hospital, Day 9

 I’ve managed to inch through recovery enough that the docs and I agreed to discharge me tomorrow. I feel confident I can manage most of my meds on my own at home, and I have a friend staying a day or so to help me with the house and everything else until my step mom can drive down from Cleveland to stay with me for a bit. I’m so incredibly glad she is able and willing to do this. Three cheers for Nurse Mary Ann!! (In addition to her caring nature and desire to help others, she’s a retired nurse  

I’m still walking and talking with difficulty from lack of breath. I’m resting and eating well, but as soon as I’m unhooked from my IV, I take the opportunity to walk some laps. KEEP PUSHING. It’s one of the few things I can control right now. 

It’s hard to tell if I’m “feeling better” than when I came in as my shortness of breath and anxiety became much worse while here. My chest does feel somewhat clearer, and I’ve gotten a lot of junk out! The anxiety has also been addressed adequately for now. I seem to be on the right track. If I didn’t think I was, I wouldn’t be leaving.

When the first antibiotic was started, I felt fevered and funky for a couple of days. When the second antibiotic was started, I had to adjust to having both on board for a couple of days. Today, the duration of my two antibiotics was moved from 3 hrs to 1 hr and 3 hrs to 30 mins in order to be easier for me to manage at home. I have not noticed particular symptoms so far, but I know my body still needs a lot of respect and caring from me as I continue to heal. BEST case scenario from treating this infection is that I’m able to reclaim some of my lung function and my shortness of breath and fatigue will improve some, too.

That’s all for now. 

L

Hospital Update, Day 7

 Hello friends,

You likely know what a fan I am of long-winded updates, but this will not be that. I'm writing this to start a central place to keep everyone informed with my situation, which has become quite serious very quickly. If you wish to follow, you may click the "follow" button all the way at the end of text on the right-hand side, and you will be automatically emailed new posts.

Summary: In January, my lung function started to decline. By March, I was officially diagnosed with chronic rejection. This is a terminal condition: some people last years, some last weeks. Treatment options have very low success rates. The only "cure" is getting another lung transplant. (Much more later on that.)

When I entered the hospital this time, my lungs were a little above the "transplant window," a decline which had happened rapidly happened since January; and, I was fighting off a bad infection with very resistant bacteria. Given that my number one symptom is shortness of breath, I was having terrible trouble "catching" my breath at times, no matter how zen I was. I'm frequently short of breath at rest. I am back on intermittent oxygen. I am doing four inhaled meds per day and airway clearance consisting of the vest, acapella, and dragon breaths. My lungs are constantly wheezy, and my chest frequently feels "super tight." I have started using a roller-walker to improve my walking. Breathing through a mask in the hospital is torture!! I am back to so much of a similarity to the things of end-stage CF that it's just eerie.

It took the teams four days to decide which antibiotic to use. After the one antibiotic was on board and being tolerated, and after waiting for more test results and team consultations, a second antibiotic was decided upon. In an abundance of caution, they decided to desensitize me to this second med - giving me a little bit at a time so as to ward off any potential allergic reaction. The process went smoothly.

There is much much more to tell, but this is a good start. I don't have the energy for more...

THANK YOU so much to those who have helped, called, texted, and contributed. It has helped so much. If you want to help more, here's what I need: you. Come visit, send a card or balloons or flowers. If your job allows, please see if coming to spend a few days with me may be helpful, or things like cooking meals, giving me rides, doing errands. Any way you could give of yourself is beautiful. I am going to need a lot of help and support in the coming weeks (months?). I will also unshamelessly accept money donations.

Address: 66 Justin Ct., Durham NC 27705

PayPal: laurapancoast78[at]gmail.com

Venmo: [at]Laura-Smith-895

Apple Pay: 919.605.7199

Anything else - please ask.