tag:blogger.com,1999:blog-173069592012-04-27T08:47:53.102-07:00This page is my online journal of my victories and challenges that are part of the day to day life of an active, thriving adult with CF. It is also a place where I will post articles, information and links of particular interest on the topics of CF, air quality and related health news. I believe firmly that God is my constant source of strength and hope; I have come this far by faith.Unknownnoreply@blogger.comBlogger430125tag:blogger.com,1999:blog-17306959.post-46124462836412719742010-04-02T16:35:00.000-07:002010-04-02T16:37:35.759-07:00

If anybody's still checking this page, I wanted to point you to a post I wrote on my own blog about an award that was presented recently in Lauren's memory:Remembering Lauren-Brad

augmentedfourthnoreply@blogger.com7tag:blogger.com,1999:blog-17306959.post-8588679512665116712009-11-04T15:25:00.001-08:002009-11-04T17:41:22.840-08:00

After 29 years of battling CF, Lauren passed away yesterday afternoon (November 3).She was a strong woman who, unfortunately, lived in a weak body.-BradP.S. In lieu of flowers, please make a donation to the Cystic Fibrosis Foundation in her name:http://www.cff.org/great_strides/LaurenBeyenhof

augmentedfourthnoreply@blogger.com32tag:blogger.com,1999:blog-17306959.post-6429046034413906882009-10-28T10:34:00.000-07:002009-10-28T10:36:21.584-07:00

Lauren got a quick sedation break this morning, so I was able to say "hi" and feel her squeeze my hand. She's getting better slowly but surely, though the c.diff is still present and she's still on the vent. We still have a long way to go...-Brad

augmentedfourthnoreply@blogger.com10tag:blogger.com,1999:blog-17306959.post-16282126422894043152009-10-26T17:37:00.000-07:002009-10-26T17:38:19.882-07:00

Hi all,Lauren has been in the ICU for a week now, and this morning her blood CO2 levels were so bad that she had to be intubated. It's definitely helping, but of course such a drastic step is evidence that she's not doing well.She's also got c.diff, and (though the UCSD center has accepted her) she's not yet on the transplant list because there are too many other things going on right now.Please

Unknownnoreply@blogger.com13tag:blogger.com,1999:blog-17306959.post-52631688947820031572009-08-29T09:05:00.001-07:002009-08-29T09:05:59.737-07:00

Quick update... Lauren is doing much better now. She's still in the hospital and on 4LPM with an oxymizer, but the last several days she's been wide awake, lucid and pretty normal (as opposed to the major confusion and disorientation brought on by lack of oxygen and beginning-of-antibiotics medicine head at first).Unfortunately her port got infected and they had to take it out. They weren't able

Unknownnoreply@blogger.com11tag:blogger.com,1999:blog-17306959.post-61980431257493212692009-08-22T09:53:00.000-07:002009-08-22T09:54:32.964-07:00

Hi all,I just wanted to let you know that Lauren ended up in the hospital again. We were actually in the process of transplant evaluation (for double-lung), and during our meeting with one of the nurse coordinators of the transplant program Lauren de-saturated pretty badly; we stopped the meeting and rushed her downstairs to the ER.That was a really scary day. She's doing a lot better now, but

Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-17306959.post-16563245026806247062009-07-14T21:26:00.001-07:002009-07-14T21:49:25.927-07:00

It's been nearly 3 weeks since I was admitted to the hospital. It's been quite a ride. I've had some really great nurses and one or two duds. Thankfully I've been getting all my meds on time, with the exception of some forgotten insulin one afternoon. (But that's another story completely.)By the way, Hi Kelly, it's Tuesday!I saw my CF doc today and he said he's going to change up my antibiotics a

Unknownnoreply@blogger.com8tag:blogger.com,1999:blog-17306959.post-32214624804553985212009-07-05T14:52:00.000-07:002009-07-05T15:13:10.391-07:00

Six years ago today Brad and I embarked on our marital journey together. Hand in hand we spoke our vows to one another, our hearts beating wildly at the anticipation of married life. We trembled with joy at the gift that God had given us--the gift of our relationship. We couldn't imagine then how fulfilling and wonderful that would truly be.Six years ago the day was a flourished frenzy of photos

Unknownnoreply@blogger.com9tag:blogger.com,1999:blog-17306959.post-81533972260309145492009-07-04T18:59:00.000-07:002009-07-04T19:18:56.543-07:00

Just because I'm in the hospital doesn't mean I can't have my very own little celebration for the 4th. Tonight I ordered cheeseburgers and ice cream for dinner, topped it off with a cold ginger ale and half a pint of milk. Mmmmm, tasty. I don't know if I'll be able to see any good fireworks from my window, but that's okay. I usually associate this holiday with fun family time, and since I got

Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-17306959.post-64926720090109609962009-07-03T19:44:00.000-07:002009-07-03T20:09:45.260-07:00

Over the last couple years that I've been in and out of the hospital, I've struggled to make use of their limited Internet connection. Imagine the scene: hooked up to oxygen and an IV pole, I precariously balance my lap top on any surface that seems sturdy and attempt to browse the web. Sometimes I would have tremendous luck and would be able to send and retrieve emails, do some work, and maybe

Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-17306959.post-85273759390067497532009-06-19T10:15:00.000-07:002009-06-19T10:23:51.802-07:00

The last couple days I've been sleeping on and off as the pain medication takes hold. I didn't know I could hurt this much and NOT have it be post-surgical pain. Every movement I make somehow manages to concentrate itself around my sore rib. It's so bad that I'm not doing my vest right now, which is a bummer because that's such a critical part of my health care. Fortunately I do have a hand-held

Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-17306959.post-86340945698779955362009-06-15T20:22:00.000-07:002009-06-15T20:46:50.429-07:00

This weekend, Saturday actually, was quite a busy one. Every five years for my grandparents' anniversary, our whole family gets together to take a portrait. This year the designated "call time" was 8:00 am. Brad and I had driven up the night before and stayed at a Holiday Inn. It turned out my cousin and her family were staying there too. It was fun to see them for a few minutes before all the

Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-17306959.post-5515280365464811352009-06-11T13:01:00.000-07:002009-06-11T13:45:52.326-07:00

Last night I had my first CF Clinic visit since my hospitalization in April. I have been feeling so good lately that I wasn't too worried about it. Mostly I was curious about how my lung function test would turn out. I was so glad to see my FEV1 up over 1.8L. The last time my LFTs were done I only got 1.54L. For those of you who keep track of percentages and not volume, that means my lungs had

Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-17306959.post-21623476825391930182009-06-08T14:23:00.001-07:002009-06-08T14:35:25.816-07:00

A few weeks ago I returned to the gym for the first time in months. I was a little apprehensive about how well I'd be able to keep up, not to mention what sort of routine I'd be able to keep. When I started my FEV1 was holding steady at 1.6. Not bad, but not good either. My trainer devised a series of exercises that would open up my chest muscles and strengthen my back so that I could breathe

Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-17306959.post-86405907338979593042009-06-01T18:37:00.000-07:002009-06-01T18:52:48.069-07:00

Today was a good day. I began my morning with a trip to the gym to work with my personal trainer. He's aware of my unique needs because of having CF, and he's designed a workout that will really help increase my lung function. I'm already feeling a difference after being stretched out. I tend to hunch my shoulders because I'm a bit barrel-chested. The exercises I did today opened me up and really

Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-17306959.post-59110991340599029392009-05-30T20:06:00.000-07:002009-05-30T20:22:12.672-07:00

Today was definitely a "May Gray" day. (hehehe, that rhymed.) I slept in this morning for a change, probably due to the medication we restarted to help me sleep. Outside it wasn't quite drizzling, but it wasn't dry either. The air was a cool 65 degrees and droplets condensed on the car windows as I drove to the grocery store.SIDE BARI love going to the grocery store. Unfortunately, I forgot to

Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-17306959.post-84902874224457335782009-05-29T19:41:00.001-07:002009-05-29T19:58:07.862-07:00

I'm very much out of the habit of writing. The last major writing project I did was to write nearly a month's worth of devotionals for "Anchor" before being hospitalized. I haven't worked on my book, my other blogs or written any articles since then. I used to challenge myself to write an essay (or article) each day. Perhaps that's the sort of thing I need to get me back to where I'm used to

Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-17306959.post-66400366457114300202009-05-27T09:16:00.000-07:002009-05-27T09:26:14.729-07:00

People have been calling and emailing me worried that my lack of blogging was an indication that I wasn't doing well. The reality is quite the opposite. I'm happy to report that I've been feeling pretty good lately and have been doing things other than blogging. I've been sewing sundresses for Kelly's twins for starters. Over the long weekend Brad and I spent time with family relaxing in Palm

Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-17306959.post-44404907420296561712009-04-12T12:21:00.000-07:002009-04-12T12:24:24.627-07:00

Matthew 28 (NIV)The Resurrection 1After the Sabbath, at dawn on the first day of the week, Mary Magdalene and the other Mary went to look at the tomb. 2There was a violent earthquake, for an angel of the Lord came down from heaven and, going to the tomb, rolled back the stone and sat on it. 3His appearance was like lightning, and his clothes were white as snow. 4The guards were so afraid of him

Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-17306959.post-78937346084651004302009-04-11T14:50:00.001-07:002009-04-11T14:50:47.745-07:00

Okay, so I've gained about 25 pounds on prednisone, and of course 80% of it in on my belly and the rest is on my face. Most of my clothes are uncomfortable and as I've mentioned before, people keep asking me when I'm due.A couple weeks ago I bought 2 pairs of maternity pants. Yes, you heard me. Maternity pants. God bless whomever invented these things. They're soft, comfortable and best of all

Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-17306959.post-28811930885863510632009-04-08T15:00:00.000-07:002009-04-08T15:09:17.269-07:00

Yesterday my PFTs were as good as I had hoped they'd be. I was hoping for a 1.6 on my FEV1 and I got a 1.6L! YAY! My improvement on my FVC (the total amount of air I can take in and breathe out) was WAY up too and the doctors were pleased. Yesterday they told me that if I made enough improvement they'd dishcharge me. I'm happy to report that I am blogging from the comfort of my own home. It's so

Unknownnoreply@blogger.com12tag:blogger.com,1999:blog-17306959.post-24543888504433370932009-04-06T21:57:00.000-07:002009-04-06T22:07:34.362-07:00

Today went fairly well. I had more energy than I've had in awhile. Good energy too, not the nervous, restless prednisone weirdness. More than the energy, I had a HUGE appetite. I think I ate too much today, but my blood sugars all stayed pretty normal. All that is except the one test I took after eating a bag full of yogurt covered pretzels. (mmmmmm!)Brad surprised me with a lunchtime visit. I

Unknownnoreply@blogger.com8tag:blogger.com,1999:blog-17306959.post-23910454675942235952009-04-05T17:37:00.001-07:002009-04-05T17:44:30.779-07:00

I think I'm at the point where the prednisone is really making me stir crazy! I'm "wired and tired" as my cf pal Katrina would say. I feel like resting, but I can't really sit still when I do. It's annoying. Mom and Dad came for a nice visit today. We went for a fairly decent walk and sat downstairs in the lobby for awhile. I had a chance to stretch out on one of the couches down there. Too bad

Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-17306959.post-64003378377166011842009-04-04T09:52:00.000-07:002009-04-04T09:57:15.061-07:00

It hasn't yet been a week, but since I've been here so much lately it feels like so much more time has passed. I'm so sick of being here. I'm lonely, tired, and bummed out a lot of the time. The days are slow and the nights are long. I just want to be at home with Brad doing normal things like making dinner and feeding the rabbits.I am making some progress though. My PFTs yesterday show some

Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-17306959.post-52389485289185203432009-04-02T09:38:00.000-07:002009-04-02T09:53:14.618-07:00

When I visited yesterday, Lauren looked the best she had in at least a week. (In no small part due to her previous visitor, I'll wager.)She's on IV Tobramycin and Meropenem, as well as inhaled Colistin. We've been trying to avoid Tobra for the longest time because of the effect it has on her hearing, but it's worth trying given how crappy she feels. They'll just need to be really careful with the

augmentedfourthnoreply@blogger.com4