Saturday, July 28, 2012

Well, I'm back

That is, back in the hospital.

Yes, dear friends, your's truly has gone from new port procedure on Monday, home, and back to Winter Park Memorial in five short days.

What a way to ring in the one week anniversary of being listed for transplant.

Long story short (or I guess short story, made even shorter) I was discharged from the hospital on Wednesday, had my usual day of feeling crappy the day after, and by Friday night was headed back across town to the hospital after an evening/night of coughing up more blood. Its safe to say these 'ol lungs of mine are wearin out quickly.

So here I sit, watching WPMH's version of cable, which features about 10 channels all about the hospital and its hospital network, Florida Hospital, 6 channels featuring the 2012 Olympics and about 5 other channels that never have anything decent playing. Luckily the Food Network is one of those few so all isn't a total loss. Well, unless you're scouring the hospital food menu while Giada cooks up one of her amazing italian dishes and all you're left with that comes close to it is the hospital spaghetti. Which in all fairness isn't half bad but still - you know you'd rather eat Giada's version.

But I digress.

Last night ended with Chris driving me, kicking and screamin as usual, to Winter Park Memorial Hospital around 3ish this morning. After we managed to get past a terribly unpleasant woman - Vicki, RN - at triage, we settled down to await the usual assesment, xrays, breathing treatments, etc in our quartered off section of the ER. It always amazes me how they insist on me doin a breathing treatment first thing. Like they assume thats not going to be my first go-to treatment when flare ups like this come along. Its CF, people, not IBS. I head straight for the Albuterol, not the Imodium.

At any rate, we proceeded to be entertained (and equally grossed out) by the neighbor sharing the other side of the thread bare curtain separating our pen from the one next to us. For hours, the 70 year old man next to us requested (very loudly) a "pee jar," explaining, to no one in particular as the nurses were doing a fine job ignoring him most of the evening, that he was on Lasix (a diuretic) and when he had to go, he had to GO and that he prolly wouldn't make it to the bathroom. I can't tell you how excited I was to have a chance to maybe experience THAT. I was tempted to start helping the man out after the first hour, holding on to all the restraint I had in the world just to keep myself from yelling out "for the love of all that's holy, please, someone get the man a pee jar!" Finally a pee jar was mercifully delivered, at which time the requests for tissues began. Apparently at some point during the begging for the pee jar, this man had developed quite a bit of mucus, mucus which was seemingly coming out of this man at an alarming rate which if a tissue didn't appear soon, he would be forced to spit it on the floor. Thankfully, one of the nurses responded to this request quicker than they had the previous, I suspect in an effort just to shut him up rather than the fear of him hockin a lugy on the ER floor. Welcome to hell.

By 7am I had to send Chris home since he had to be at work at 8:30am without having slept a minute the last 24 hours (at the time this is being written, he is officially running on 36 hours of no sleep). God bless that man. Honestly, he is way to good for me. At this point, I'm shuttin down. I'm tired, in pain, and just over it. I laid curled up quietly holding back tears for the better part of an hour. Its at that point my mom's sister Patti showed up and the flood gates opened. After a good cry, a phone call to the parents followed by another cry, and a total of 9 hours in the ER, I was FINALLY told they had a bed ready for me. Just in time for lunch.

For the next few hours I settled in - ate lunch, talked with doctors, couple more blood draws and caught up on the IV meds I missed during my stint in Orlando's version of Alcatraz. Our current treatment plan is some modifications to some medicines that seem to be thinning my blood too much, upping my Vit K and ordering a consult from the hematologist for tomorrow since latest blood work has come back showing a low platelet count. Not something that is unusual for me, but something we're hopeful will slow down or stop these bleeds. We're hoping that all these small changes in my treatment will give my lungs a break for a while so I can focus on regaining my strength and packing on some of those ellusive pounds I'm always chasing after. If this doesn't work, the next step is another bronchial artery embolization, which Dr. Layish really doesn't want to do right now.

And thats where we're at. Im tired, sore, and need a nap.

So now, I'm going to ask for what we always ask for. Your thoughts and your prayers. I'd like to ask for you to specifically pray for my husband Chris. He is amazing. His strength, patience and positivity is amazing. I truly know that without him, I wouldn't be here today. He needs your prayers for strength as he travels back and forth from the hospital, work and our house surviving on just a few hours of sleep at a time. He saves my life everyday, in one way or another and I am so thankful he's mine. Please pray that he knows everyday how much he means to me and my family and that even though I may not say it everyday, that he means more to me than anyone ever could and that his sacrifice, his dedication to me and to us never goes unnoticed.

Thank you for all the love you have shown to me, Chris and my family. Its holding us up and carrying us through this journey. We appreciate every text, call, email, and post that shows us that we are not going through this alone. Please know that each one does not go on noticed. And please keep them coming...this journey has - God willing - just begun.

Much love...E


  1. Erin, you have become such a strong example to me and to others. I know you are in pain, frustrated, anxious and yet you fight. You are courageous, determined and kind to all (save those #@&% nurses who wouldn't find the old man a pee jar!)! Damn, girl, you got the stuff!
    Of course, you, Chris and your entire family remain in my prayers and in the prayers of my prayer group. The service at church tomorrow will be dedicated with special intentions for you and your lung transplant - knowing that God can and does move mountains. Bless you, Erin. If I ever face anything near as intense as this, I prayer I can be as brave and positive as you are. Thank you and Good Night - may streams of angels bring you a restful sleep. Lovingly, Joyce B.

  2. I wish so much I could wave a magic wand and remove all of this from you. I talk about you all the time and your amazing strength. Your husband's strength is pretty flippin' awesome too. As always, you'll be in my prayers. You've got this girl. I can't wait to see you on the other side of it all!!!

  3. Erin, sending prayers to you, Chris, and your family. I'm amazed, that through all of this, you maintain your sense of humor! What a gift! Keep smiling, and keep the Faith!

  4. love you sweets...thinking of you always. xoxo...tara

  5. We saw Jillian, the girls, and your parents tonight at El Ran. Thought of you and instantly said a a quick prayer. Thank you for giving me something specific to pray for, many prayers are continuing your way! -Kellie

  6. Erin, this is Lynn (Mary Anne's sister from NY). You have been in my thoughts and prayers. Please know that you, Chris and your family have prayers coming from all over! Your blogs are so inspirational! Please take care, Lynn & family.