Breathing Deeply: My Life With Cystic Fibrosis

I'm HOME!

My attending Dr. took pity on me and said that for my mental well-being he was going to send me home. He said that I'll have to do 5 days of home IV therapy, but who cares? I'm THRILLED to be here. Everything happened all at once. It was like all of a sudden everything clicked into place and it was time to go home.

Home health care has already been here and there were no problems with them. I've made a ton of phone calls already to my relatives (who apparently read my blog now) to let them know that I'm free as a birdie.

God is faithful and He is good. He does not give us more than we can handle. He knew that I could not have handled another day as an inpatient. I'm thankful for His mercy and the way He provides for my needs. I'm also very thankful for all the support and encouragement I receive from friends on a regular basis. It's nice to know that I'm plugged in to such a great community.

After that crazy night with the hemoptysis, I'm happy to report that things are going MUCH better. I'm bored out of my gourd which is a definite sign that I'm ready to be set free. There are just a couple tests left to do.

Monday: swallowing study
I've been having trouble swallowing. It's like I can't make my throat do what it's supposed to. No matter what sort of food or drink it is, my throat just gets stuck. My dad has a similar problem, so it's worthwhile to see if I have it too.

Tuesday: spirometry
The all important lung function test to see that I've improved my FEV1. All the doctors and RTs say that my lungs sound much clearer and less diminished each day. I've been able to tolerate all the funky CPT positions, and they've been effective.

Wednesday will mark my 15th day in the hospital and my 27th day on IVs. They're saying that Wednesday might be the day I get to go home. My spirometry on Tues will be too late in the afternoon to get anything started for discharge paperwork. I'm hoping that I'll be able to go home without IVs. That's my big goal. I want to walk out of here without the dread and impending exhaustion of doing home infusions. We've had quite enough of that lately thank you.

Tonight I'm in good spirits. Brad came for a visit and brought me a Frappucino. Mmmm. Yesterday he went on a quest for a Krispy Kreme donut for me. I normally dislike donuts, but I figured with my weight as low as it is, I'd sooner eat a donut than drink Boost or Scandi.

My goal when I get home is to keep resting and work on eating more. I have a tremendous affinity for grapes lately, but those don't have enough calories. I'm looking forward to baked potatoes with butter, sour creme, veggies and cheese. That oughta help put some of that weight back on. I've got a long way to go--I lost 20 pounds. (YIKES)

Wish me luck folks; this could turn out to be a great week.

After such a great day yesterday I had a really rough night. About 8:30 I felt a pop and a gurgle and started coughing up blood. That hasn't happened to me in quite awhile, so it freaked me out. Fortunately the RT was just walking into the room, so we got things squared away pretty quickly. First they put an oxygen mask on me (the kind that looks like the ones in airplanes) just in case I had a pneumo. While the RT did that, the nurse paged the doctor who came in record time. He did a quick assessment then had me sent down for X-rays.

Riding in an elevator while being on oxygen and having just had a morphine shot makes for an interesting ride. Especially when the transporter doesn't know what floor you're supposed to go to. I was getting quite dizzy from going up and down. Finally I pulled the mask away for a second and told her we needed the first floor. She was really irking me. Her cell phone kept ringing and she kept shouting "hola" and "what's going on chica?" to all her buddies in the hall. Ugh.

The X-ray tech was nice. He knows me pretty well by now. I assumed the position for the first round of film. Ouch. Stretching my arms up over my head was quite uncomfortable. Then I did the pose where you hug the machine. Again, painful.

I mentioned yesterday that the doc wanted a CT of my sinuses. The x-ray tech noticed that and asked if I wanted to do that right then. I figured what the heck--it'll give me a chance to nap tomorrow instead of coming down again. By the time I was positioned on the CT table, I was getting quite drowsy. I was dizzy too since I had my hearing aids out. The scan only took 5 minutes.

Back in my room I still had to wear what I call "the platypus mask" with 100% oxygen. Then when the doctor saw my x-rays he said I could take it off, but sleep with the cannula just in case. So I did. I woke up way too early this morning (about 5:00) and couldn't go back to sleep. My chest still hurts a bit from whatever happened. I'm glad I didn't have a pneumo. They think that one of the sections of my lungs that has bronchiectasis just decided to spontaneously pop.

We're keeping an eye on things. They didn't want me to do CPT just in case. I'm glad my FEV1 was high enough yesterday that I can just coast today without the CPT. I'll have it again tonight though.

More to come...

Last night I got some really decent sleep. I hardly moved at all during the night. I think part of it was the pain meds, but so what. I've been free of supplemental oxygen for 3 nights in a row now, which is definitely a sign of progress. The nurses said I had a bit of a sparkle back in my eye again today. I still don't feel completely well, but I do feel better than yesterday. I went for a pretty lengthy walk today to stretch my legs. I needed to get the circulation going because they were so cold! I have really low blood pressure, so I'm usually cold from the knees down, and on the tip of my nose. Brad on the other hand is always nice and warm. That's one of the things I like about snuggling up to him. Anywho, the resident (?) doctor came by today and said that my white count was 12 (compared to the 20 something it was before.) Normally white count is supposed to be between 4 and 11. He was happy with my progress. Later my CF doc finally popped his head in to see how things are going. He too said I was making good improvement but still had a way to go. He dangled the possibility of going home next week like a dirt farmer dangles a carrot in front of a donkey. Of course, it all depends on my spirometry. Today's spirometry was a nice jump up from the last. It was 1.83L! Hooray! I will have them again next Tuesday. By that time I'll have had 2 full weeks of antibiotic/antifungal therapy. There's also been some talk about a possible sinus surgery. I've had it twice before and it always made a positive difference. Today they ordered the CT scan of my sinuses. Who knows if or when I'll actually need to have a good clean out in there. All in all it was a decent day. Now I just need to get my weight back up. I'm sure that will come too once I'm back to my normal routine at home. I bulked up before without a single drop of Scandi (BLECH!) and I'm sure I can do it again. I've got a bunch of sticky buns waiting for me in the fridge at home for that exact purpose. Here I have some good snacks that my mom brought. Fiddle Faddle, Double Stuf Oreos and cheese and crackers. Soon 107lbs will be a distant memory and I'll be back to good ol' 125.

I'm really liking the doctor that I have (this week.) He's very good at answering questions and even lets me see lab results and treatment notes. I like knowing what's going on.

Today started on a rough note. They gave me a different medication for pain than they usually do, and it made me throw up. Ugh. The remedied this by giving me an anti-nausea medication. That put me to sleep for about 4 hours. It was a nice nap all in all.

One of doctors on the team said that every time she comes in here I'm sleeping. She said I should really try to get to sleep at a decent hour so I don't sleep all during the day. I told her that the medications I'm on for bipolar make certain that I'm asleep by 10 at the latest, and that it's because the nurses wake me up at 5:30 to tell me they're setting out my pills that I'm supposed to take at breakfast. Not to mention the fact that these are some hard core antibiotics, and that drains my energy too.

This afternoon we hit a good milestone. I came off the oxygen and at 95% on room air. I'll still wear it at night, but that's okay with me. I like knowing I can sleep and breathe easily.

All the stress of the last couple weeks has taken its toll on Brad. He's sick. I saw it coming a mile away, even though he was trying to hide it from me so I wouldn't worry about him. What a self-sacrificing guy. All the nurses comment on what a darling couple we are. I said "If you think we look look in hospital attire, you should have seen us at our wedding!"

I have a student nurse helping me out today and she's been really good. She asks me if I mind answering questions about CF and my meds; She does it in a way that makes her sound like she genuinely wants to learn about stuff. She just popped her head in here to say "goodnight" which I thought was really nice.

So things are on their way up, though I have a long way to go. There's no release date in site, especially since my FEV1 was so low. I'm curious about what it will be like tomorrow. I'll be sure to post about that.

I've been on 2L of oxygen since I got here. I can go for short walks without it (like to the bathroom) but that takes a lot of energy out of me. I'm on a massive cocktail of antibiotics--oral and IV. I was needing meds for pain at first, but I've gone nearly a whole day without needing anything like that.

My FEV1 is only 1.4L and my weight has dropped below 115. Not what I like to see happen. I look in the mirror and I see that my appearance matches how I feel--sick and worn out. Please don't worry about me though, I'm in relatively good spirits, and Brad is doing a great job of keeping me company.

I'll try to do better with the updates.

Hi Breathing Deeply readers… it's Brad (Lauren’s husband).

I just wanted to let you know that she's in the hospital again. The tune-up we started at home wasn’t working as well as we had hoped, and starting a couple of days ago she was having increased shortness of breath. This morning, one of the first things out of her mouth after I woke up this morning was “we need to go to the hospital.”

She was having a hard time breathing and walking, and due to some construction at our hospital she needed to walk farther than usual to get in to the emergency room. She never made it on her own power, though, as she ran out of breath and had to stop just inside the hospital entrance.

Thankfully, it was right as several nurses were showing up for the day, and also as one of her favorite RTs was on her way out after a night shift. These great ladies all helped her get oxygen and a wheelchair and got her over to the ER without her lifting another finger (or foot).

Anyway, the oxygen and IVs (they changed the cocktail a little bit from what she'd been taking at home) seem to making her a bit better, though it looks like she might have pneumonia again. The brightest spots of the day, though, were seeing familiar faces. In addition to the RT who helped her in the morning, one of our favorite nurses was taking care of her after she was admitted.

Anyway, please keep her in your prayers. We're hoping she'll be able to kick this odd exacerbation and come home soon!

Labels: health

Today's one of those days where I feel like the treatment is actually worse than the disease. I'm still itch free, so I'm trying to focus on that and be glad. It's the other side effects that are giving me a rough time. The colistin has made my fingers, toes, mouth and scalp quite numb. I'm having a hard time walking around without stumbling. Every time I stand up I can't see for at least 15 seconds. It feels like an eternity. My blood pressure has always been low, so that's probably what's causing this.

I'm so tired these last few days. All those strong drugs pumping through my system are really doing a number on me. I take cat naps all day, and then at night I conk out for lengthy periods of time. The most troubling thing is that even though I'm eating, my weight is awful. I can't wait until I get more lung function back so I can work out harder again. I need to rebuild that muscle mass.

When I'm in the middle of IVs, it's always hard to look to the future with optimism. In the midst of all these nasty side effects, it's difficult to envision a more stable health status. I worry about how much longer I'll be able to work. I know it's not productive or healthy to worry about things that are out of my control. That's something I need to work on in my spiritual life.

I know God is always faithful, and I also know that he doesn't always let us in on his plans. We just have to move forward with faith. My husband is great at reminding me of that. Whenever I get caught up in worrying, he brings me back down to ground level and tells me to calm down. I love that aspect of our marriage. I'm so blessed to have Brad with me on this journey.

Yesterday I called the doctor to ask if there was anything else I could try for the itching. They said to try Tagamet. I thought that was sort of weird, but I was desperate. I bought some of the stuff and gave it a whirl. During dinner last night (corn dogs...mmmmm) a feeling of relief completely washed over me. Brad said that my expression totally changed.

Since the itchiness had left, I had a wonderful night of sleep. I don't even remember falling asleep. I just remember how good it felt to be in bed and not dread the feeling of the sheets against my legs and arms.

I was looking up the ingredients of Tagamet to see what it was that makes it work that way. Turns out it's an H-blocker (the H stands for histamine.) Although it's marketed mainly because of the other properties that make it great for managing heartburn and stomach acid, it's great as a mild antihistamine. I even found an article that mentions that Tagamet is good for CF patients because it helps keep the stomach acid under control so that pancreatic enzyme supplements can work more effectively. I'm looking forward to that aspect of that.

As far as the other side effects of the meds go, those are actually minimal compared to what I've experienced before. Usually by now I'm loose as a goose. Now I suspect that maybe by having the high fat high protein diet in the hospital, I'm getting more fat than my body can handle. Strange food always does a number on me, so I think that by being at home and eating my usual foods, I'm doing a lot better than if I had been in the hospital.

My FEV1 has reached a bit of a plateau at 1.8L. That's definitely an improvement from a week ago. I don't have the same ache in my chest as I once did either. Things are looking up!

I like that the antibiotics always seem to turn things around for me, but what I don't like are the icky side effects that go along with them. It's almost tearfully frustrating sometimes. Like last night. I am itchy from head to toe, and nothing brings relief. I've tried a hot bath, cold bath, oatmeal bath. I've taken sleeping pills and antihistamines. I've tried sleeping on the couch upstairs, downstairs and in my craft room. Soft pajamas, coarse pajamas, no pajamas. Nothing makes a lick of difference.

So today I'm sleep deprived and cranky, bordering on being downright unpleasant. My ears are ringing from the antibiotics. My fingers, toes and scalp are numb from them as well. My good humor is wearing thin, but could be better tomorrow.

There is a bright spot in all this and that's the simple fact that I get to do this round of treatment in the comfort and privacy of my own home. I'm not restricted to eating my meals between the hours of 7am and 7pm. I don't have ask for help to take a shower. I'm not pestered at 5:30 a.m. by an internist or resident who needs to ask how my night was before s/he meets with an attending physician.

Weighing the good and the bad is something that seems to happen naturally just by living each day with CF. There's always a good and/or bad aspect of the disease that's ruling at any given time. Right now it's my lungs that are bad, while my bowels are good. My sleep is bad, but my appetite is good. Somehow it all balances out and creates the portrait of a day in my life with cystic fibrosis. I hate cystic fibrosis, but I love the life I have. How's that for a paradox?

We started IVs on Thursday evening when Brad came home from work. The Coram guy was noticeably more professional than the last time, which was good. I'm on 3 meds total. Colistin, Ceftaz and Levaquin.

I definitely am feeling the side effects of all these potent drugs. I've reached that "tune-up slump" phase where I'm just really tired. Yesterday was great though. I woke up when Brad did and made us Belgian waffles with strawberries. We exchanged cards and gifts over breakfast. I gave Brad a DVD and a nice silk shirt to wear that night for dinner. He gave me REAL PEARL earrings! I was so surprised! I thought dinner out to Cin Cin was my gift. Wow. The earrings are beautiful. I think I've mentioned before that Brad has a "thing" for earrings.

It was so clever how he picked them. He said he realized that he hadn't gotten me any "real" jewelry since our wedding. (I don't mind that at all. I'll shop at Claire's boutique any day for jewelry.) So, he went through my jewelry box and noticed that I didn't have any pearls except for a ring my grandma gave me in 8th grade. They were wrapped in a little silver box shaped like a heart. I can't get over it!

We sat around for most of the day and just watched movies on our Netflix instant queue. We watched a chick flick (Far and Away) and an action movie (Vantage Point). The day was actually very restful. At 5:30 we got ready for dinner. Boy did we look good! I should have had someone take a picture of us, but I forgot.

The restaurant was as wonderful as the last time we went. They were very generous with the bread basket; they even brought us an extra one when I asked. Hehehehe. Gotta get those calories somehow. I loved dipping the bruschetta in the olive oil and balsamic vinegar. Our meals were perfect, and for dessert we shared tiramisu. It was a very lovely evening. I couldn't have asked for a better day.

Today I slept late and lounged around the house. I've been moving between the upstairs couch and the downstairs couch. We have an IV pole set up in both locations to make things easier. Brad is doing a phenomenal job of being my nurse. The first thing I saw on our anniversary morning was Brad hooking up my IVs. I smiled to myself and thought "now THAT is love in action."

5 years together and every year gets better. We are so thankful for the things we've learned about ourselves and each other. We've weathered some pretty intense storms together and come out the other side looking more beautiful than ever. God is faithful and gives us so many reminders of what true love really is.

The human comedy is always tragic, but since its ingredients are always the same - dupe, fox, straight, like burlesque skits - the repetition through the ages is comedy.

Although some of the big-time life decisions that I make are different from those of my friends with CF, that doesn't keep me from sharing in their joy to some extent. I may not always agree with why they make their choices, and I don't always understand their reasons behind them, but that's not for me to decide.

One such issue of lung transplantation. I am not in favor of it for myself. I don't wish to trade one set of serious medical issues for another. I couldn't face the possibility of organ rejection, or of any number of complications that may arise from the procedure. The people I know who have had transplants have had experiences that vary across the board. One person has had multiple transplants as her new set of lungs has fallen victim to rejection. Another young woman has is now battling cancer (some sort of transplant related leukemia--something I had never even heard of!) Yet another young woman is, at this moment, undergoing one of the riskiest types of lung transplantation imaginable due to the severe deterioration of her existing lungs.

From what I can tell, lung transplantation is not all it's cracked up to be. The odds of still being alive 5 years after transplantation is only 50%. Not exactly impressive odds. Also, in the United States, patients have to foot the bill themselves for their transplant. Some say you can't put a price tag on a second chance at life, but apparently you can. How is a person with CF, who is obviously so sick that they need new lungs and is unable to work, supposed to come up with the money for a transplant? The very idea boggles my mind.

Instead of raising money for a transplant, I'm raising money to help find a cure. We need to cure CF, not just pretend we can fix it with a transplant. The Cystic Fibrosis Foundation is the leader in funding independent research to develop life-prolonging medications and treatments for cystic fibrosis. They pay for research that the government won't. Please consider donating to the CF Foundation on my behalf. Someday CF will stand for Cure Found.

Please donate to the Cystic Fibrosis Foundation

I haven't done much creative writing for awhile now. Today I took on a writing challenge to describe my life in poetry form. You can tell by reading it that I'm still struggling with depression, but that I'm improving. The poem is kind of "rhymey" and it's iambic, so it's a little singsongish. Nonetheless, here it is.