Hemoptysis in the Hospital

This has proven to be a different kind of hospital stay for me so far. Many of my stays are exactly the same in terms of how I feel coming in and how I feel going out. I have the usual chest tightness, increased cough, increased sputum, decreased energy, and the list goes on. Generally, I come into the hospital not feeling great in the first few days always have me feeling even worse due to the poison antibiotics running through my veins. After the first few days I start to incrementally improve over the course of the next two weeks usually to be discharged feeling like a million bucks.

This stay started out like so many before it but a recent turn of events have made it unlike any other.

On Wednesday night I was falling in and out of sleep watching Netflix. I woke up around 12:45am or so and decided to put the head of my bed down to be a little more comfortable. And then it happened, a feeling that many of my fellow cysters and fibros the world over recognize, the rattling of the chest and the gurgling in the throat. I knew immediately what is happening as it is a sensation I have felt many times before.

Only a representation of what I remember it looking like :)

I got out of the bed and walked into the bathroom and spit out a mouthful of bright, red, fresh blood directly into the toilet. I proceeded to cough up a generous amount of blood into the toilet before turning to the sink as the blood splashing upon the toilet water and dripping onto the floor was not painting a pretty picture. At this point there was blood on the toilet seat, on the floor around the toilet, in the toilet and on the walls near the toilet. As I was transitioning from the toilet to the sink I let out a cough that I couldn't quite hold in and blood spattered on the faucets and wall behind the sink. I leaned over the sink turned the water on and tried to clean as I coughed. I was doing my best to not get the blood everywhere, as evidenced by my hands which were now covered, but my attempts failed as the bathroom looked like a murder scene and I was the prime suspect.

In between one of my coughing fits I managed to press the call light to try to get some assistance. At this point I was feeling a bit lightheaded and worried that I wouldn't be able to stand much longer. I can't imagine what my nurse thought as she walked into my room well after midnight not finding me in my bed but instead covered in blood in my bathroom. If it's any indication her first words were, "Oh no!!"

Within minutes there was a rapid response team in my room. I stayed in the bathroom until the blood ceased and when I walked out and saw 8 people standing in my room or immediately outside of it and I said, “It's not that big of a deal guys!". I was sat down in the chair and the questions ensued.

Yes, this is happened before.
No. There hasn't been this much blood since 2009.
Yes, I feel lightheaded.
No, I don't feel dizzy.

Since the active bleeding stopped and my vitals did not look alarmingly bad, they just decided to order an x-ray and different blood panels.

On Thursday morning I felt like I had coughed up a lot of blood the night before.  I had body and joint aches and my lungs were experiencing a bit of pain.  I also sat up for the rest of the night as to try and avoid another bleed.  The rest of the morning was normal with doctors coming in and out of my room and breakfast nourishing my body. Then around 1:30pm or so, it happened again.

This time I grabbed a nearby bucket that they had given me the night before as I new they would want to get a measurement. The rapid response team was again called and as a result of my prior history and the fact that I had coughed up an additional 100 mL on top of the estimated 150 to 200 mL the night before, I was sent to the ICU for observation. They wanted to be sure I was in a place that I could get immediate attention if a massive hemoptysis visited me again.

After consultation with the pulmonary team and interventional radiology it was decided that a bronchial artery embolization (BAE) was needed. I've had two of these procedures in the past, once done to both lungs and once done to only one side (forget which one). I was admitted to the ICU on Thursday afternoon and wheeled down to have the procedure on Friday at 5 PM.

Not my lung. My bleed was from my left BA and they used foam and beads.

The procedure took about two hours to complete and according to the surgeon's notes and also the fact that I have not coughed up any more blood, it seems to be a success! I can will bleed again in the future and just pray that it will be at least another 6 years before it is an episode that needs to be addressed.

I was moved back to my regular floor late Saturday night and I'm very grateful to the ICU nurses who took care of me, the interventional radiologists who did my procedure, all those involved on the rapid response teams, my nurses and techs on 3NE, my pulmonary and CF teams, and all my family and friends.

Side Note: I have to brag a little bit about my family support. Mandi was at our home in Chandler when the second episode of hemoptysis occurred.  In fact, she happened to FaceTime me as I was holding the bucket of blood. The concern on her face was of course expected and immediate. I told her not to worry and that I would call her with an update. Before I had the chance to call, she let me know that the girls and her were on their way up to meet my in-laws at a halfway point between our houses. Eric and Nancy didn't think twice about taking the girls for an unknown period of time even though they had just picked up dear friends from the airport who were in town for a visit. I am so very grateful. I'd be remiss if I didn't mention that my wife ended up driving back to Phoenix the next day to get the girls and bring them back down the very same day. They arrived shortly after my procedure and were with me while recovering (Friday night) and the entire weekend. When my wife wasn't by my side, my mom was. And finally, I received many texts and prayers of support from my family and friends.

And finally, honor and praise to my Lord and Savior Jesus Christ who guided the hands of the IR team, protected my wife on the roads and sustained my health and spirit throughout the entire process. God is always good.

Hemoptysis Episode and Children

Question:

I posted some questions on your blog a few weeks ago about how you manage having a baby with all the CF stuff. Thanks again for your response. : )

Here's another question: are you ever concerned about Mckenna's safety or your safety if you have a hemoptysis episode? For instance, if you were alone with her and you had a bad bleed? I have had periodic hemoptysis for nearly 20 years and had an embolization last year, but I still have random bleeds. For instance, last night I coughed up 1/4 cup, but I have no other symptoms of being sick right now. My husband and I have been discussing adopting a baby, but that does seem like a pretty big concern to me.

In addition, here's one more question. Do you feel safe traveling internationally if you are prone to bleeding? I have a lot of anxiety about it and don't really go anywhere too exotic for fear of an emergency. I saw that you went to Singapore, so I was wondering how you made that work.

If you could shed some light on how you deal with this scary and frustrating CF problem, I would really appreciate it. : )

.....

Answer:

I hope your Christmas season was a good one and that you are enjoying the new year thus far :)

To be honest, I've never been very concerned about having a massive hemoptysis and being alone with Mckenna. If it happens, it happens. There is always a neighbor or 911.

Bleeding on a flight is always a slight concern, but I do my best to avoid sudden movements as to control the already increased pressure in my lungs and I sit in the aisle. I used to prefer the window, but now I like access to the bathroom if and when I have a bleed. 

Most places have decent enough healthcare if you were to have an emergency. Singapore has top notch healthcare. I've also however spent a lot of time in China and they have no clue what CF is :)

Here's probably the best way to answer your question - I don't let my health dictate what I do or do not do. If I want to do something, I put myself in the best position to succeed, and I do it. I'm not going to let the chance of having a massive hemoptysis stop me from spending time alone with my daughter, or pursuing a family in the first place. I won't let the possibility of a bleed prevent me from seeing some of the most beautiful places in the world.

As long as I'm putting myself in the best position to succeed and working my butt off every day to be healthy, I'll reward myself with life!! :)

Hope that helps.

Hemoptysis Questions

Had a couple questions from a reader that I thought I would share regarding hemoptysis (coughing up blood). Hemoptysis does not happen to all CFers, but if it happens to you, it wouldn't be considered out of the ordinary. I answer all questions to the best of my ability - based on fact, combined with what I've picked up over the years and with a little dash of hoping I'm close:

What do you do after you've coughed up blood?

If I cough up blood I have a pretty standard routine...no pulmozyme for 24 hours. no vest for 12 hours. If clear for 24 hours I resume pulmozyme. I will exercise at 25% the day after the blood.

50% two days after. And if blood free, I resume all activity as normal the third day.

Hemoptysis seems to happen to me a lot at night time, is that the case for you?

It can happen because of the pressure change with laying down. Try sleeping propped up if you can...I've spent many nights sleeping sitting up!

Do your doctors know the source of your hemoptysis? I have bronchiectasis in my right upper lobe, and I understand that it is common amongst CF'ers, and my doctors believe that's what is causing the blood. Could you tell me more about bronchiectasis? Is it the cause for hemoptysis for most of us CF'ers?

Bronchiectasis is just a fancy word for damaged lung. Most all CFers have a varying levels of it and it really just a matter of when not if it will happen. That's what CF can do over time, damage lung tissue and airways. We must focus on doing everything we can do to keep our lungs open and clear. The more closed off and full of junk our lungs are, the faster damage happens.

Bleeding is often a result of infection or blood vessel thinning. Our vessels/veins have a tougher time getting blood to where it needs to go because of our damaged lungs and over time get bigger and thinner. If you look at them under CT, they look like big worms instead of how they should, spider webs or spaghetti noodles. As they get bigger, the walls of the vessels get thinner and are more apt to tear. When they tear, this can result in bright red blood coming from our lungs.

Thankful Thursday - No Morning Sickness

Know what time it is? It's thankful Thursday time! We checked into the Hole three weeks ago and it's time to celebrate a little thankful Thursday! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. as I mentioned, I no longer have the "linky tools" but I invite you to share your thankful blog in the comments section. Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for feeling good. I haven't had any major nausea yet, so that's a big one to be thankful about. I have some really minor nausea if I haven't eaten in awhile, or I eat a lot (especially of sugar), but nothing like what some people talk about. None of this feeling like I'm going to vomit or can't eat (I have the opposite problem, I can't stop eating!) But I am very thankful to be feeling so good.

I am thankful for Thai food. Last night we had Thai food for the second time since Ronnie's been in the hole, and man do I LOVE it! It always hits the spot. The best part is there's a great spot right by the hospital, so it's a quick drive to go pick it up. I absolutely LOVE asian cuisine, but I think Thai is my favorite. I am so thankful to spicy, flavorful food!

I'm thankful that I have a husband that takes care of himself. I must say, I was ready for Ronnie to get out Tuesday. I am ready to get back into the swing of things. But I would much rather push off the swing of things to have my hubby at 100%. But the best part is, he isn't just sitting around saying, "oh, I'll get better". He's been doing extra treatments and running/walking multiple times a day. I am so thankful that he takes such an active role in his health. (I'm also thankful that he can put up with my hormonal crankiness - which I tried to mask - when I realized that we may be here a while longer, and snuggling in our own bed would have to wait....he's such a trooper!)

Ronnie's List:

I'm very thankful that Mandi is able to be by my side every single day that I'm here in the Hole. I realize that some couples aren't as fortunate and I can of course see that making this time of our lives much tougher. Not only am I thankful for the simple moments we share together in here, but I'm also thankful that she's so willing to run and go get food when the hospital tray just won't cut it!!

Speaking of the Hole, I'm thankful that my PFTs didn't go down on my last test. Granted, they didn't go up like I wish they had, but I'll take a no percent gain over a ___ percent decrease everyday of the week. I'm hopeful that I'll start to feel back on top of my game in the next handful of days. For me, it's not about the numbers, but whether or not I'm to a point that I'm able to kick booty outside of this place.

Here's a repeat from last week, but it still holds very true for today. I'm thankful that there has been no blood. I've gone on some intense run/walks for the past couple of days, and so far, no blood. My goal was to put these lungs of mine to the test and I think I'm doing a decent job of doing so. I can't say that it will equal the workouts I have at home, but the fact that there is no blood so far is a good sign! Let's just hope that this trend continues.

So, what are you thankful for today?

Thankful Thursday - There Will Be (NO) Blood

Know what time it is? It's thankful Thursday time! We checked into the Hole two weeks ago and it's time to celebrate a little thankful Thursday! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. as I mentioned, I no longer have the "linky tools" but I invite you to share your thankful blog in the comments section. Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for my loving husband. He has been such a trooper. The Progesterone shots have left my butt feeling like there are GIANT Charlie Horses in each (zone) where he sticks me. He, being the loving, awesome husband he is, has been rubbing my sore butt for hours these last few weeks. I don't know who will be more excited for these shots to be over at week 8!

I'm thankful for my Grammy. She taught me a WONDERFUL trick - the rubberband trick. Since I'm still incredibly bloated (I think it's still maybe getting worse, they say it will start to get better at some point...just in time to actually start showing), she told me the most wonderful trick to make my pants "fit". You feed a rubberband through the button hole on your pants, and put both ends around the button. It makes it so I don't have to feel like a stuffed pig trying to get my bloated belly into my all too small waistband. I love the wonderful tricks that my Grammy teaches me!

I'm thankful that God answered our prayers and we're pregnant. This was on my list last week too, but I think I'm allowed to do it two weeks in a row, right? Pretty sure it merits two weeks in a row. I am just so thankful that we are pregnant and praying that we will be holding our baby(ies) in 9 short months. I never knew I could love little sesame seed(s) so much. I am so thankful that God has blessed us with this(these) baby(ies)!!

I'm thankful for exercise bikes at the hospital. Our hospital provides exercise bikes in the room if you want one. And man has it been nice. I'll throw on some sneakers, and sit and pedal while watching TV with my hubby. It's a great way to get my heart rate up a bit, tone my legs, and make my lungs work - plus is helps ward off the bed sores I probably would otherwise get while Ronnie's in the hole...seems like all I do at night is lay in bed!

Ronnie's List:

I'm very thankful that Mandi's belly is getting bigger! I know that it is no guarantee that we are still pregnant or that this whole thing is going to go off without a hitch, but it sure feels good to see it growing. Plus, I happen to think that there is nothing sexier than a pregnant woman, especially when that woman is my wife. I don't know what it is, but I've always been so drawn to that belly. I think it's because of the vast respect I have for a woman that can carry a human being inside her belly. Crazy!

I'm thankful that for the last couple of days, I've woken up feeling a little bit better than the day before. I never quite know when it's going to happen here in the Hole, but it's always a good sign. Barring any unforeseen circumstances and assuming I continue making the strides that I'm currently making, I fully expect to be outta here next week. I'm hopeful that the way I feel and my PFTs warrant a release (with the most important thing being the way that I feel).

I'm thankful that there has been no blood. I've gone on run/walks for the past two days, and so far, no blood. I told my doctors that my goal for this week was to try and make myself bleed by really pushing my lungs. I can't say that I've kicked it into overdrive quite yet, but the fact that there is no blood so far is a good sign! Let's just hope that this trend continues.

So, what are you thankful for today?

First Hospital Run

I've Sprung Another Leak!!

**Don't watch if the sight of blood makes you queasy**

Hospital on the Horizon

Today or tomorrow I'm expecting a call from the hospital. I knew this day was coming and I'm actually excited to be able to get in and get tuned up. As many of you know, I've had some issues with bleeding that unfortunately have made it almost impossible to exercise or even do my treatments at the level that I'm used to. After three weeks or so of this, you could understand that my lungs definitely feel different and more tight than there used to. Putting off hospital stays isn't something that is commonplace for me, as I understand the importance of putting my health first, but under the circumstances I'm able to forgive myself. I've been needed around here in the last couple of weeks and in my mind there really wasn't any way around it. Not only did I have to be around to do my part in the IVF process, but I also had to be here to assist Mandi in hers. And after the episodes we experienced after Mandi's egg retrieval, I'm sure thankful that I was around. There certainly are some times in life where you have to make tough decisions. In this case we're thankful that in the past three weeks I haven't felt like my health has taken a major blow.

So now it's just a waiting game. My CF team called a bed in for me today, but none were available. Apparently my hospital was on what they call “code purple”. Basically what this means is that they are not accepting any patients that are trauma cases. Believe me, I'm not sad at all that I don't qualify to be admitted. It actually worked out pretty well as I had a lot of catching up to do today as I just got back my computer and had fallen a little bit behind in my e-mails. I'm hoping that I can get in in the next couple of days because the sooner I get in the sooner, I get out. I'm also hoping that once I get in my lungs respond well to treatments and I am able to start exercising quickly. Obviously, we need to figure out the source of the bleeding and possibly do something about it before I'm really able to push myself. I'm counting down the days before that happens.

I'm also facing another interesting transition heading into this hospital stay. For the first time ever, I'll be seen by an adult CF team. My hospital was forced to develop an adult team as the adult population at my clinic continued to grow. It is understandable, as adults have separate issues, but that certainly doesn't mean transition will be easy. I've been building a solid relationship with my CF care team for the past 31 years and that isn't something that's easily replicated. It's going to take time, trust and an open mind to develop the kind of loyalty to this new team that I have for my old one. Luckily, I still see my peds team in clinic and they'll be updated with how I am doing. I'm actually looking forward to working with this new team as I really think my hospital has a good opportunity here to build a good adult CF program from the ground up. I'm looking at this as an opportunity to be part of something new and hopefully something big. Wish us luck!!

An Update from Clinic - It's Crunch Time

Yesterday, I had clinic for the first time since I got out of the hospital in mid-September. They'd like me to come to clinic more often, but with the frequency that I do clinical drug trials, I always have a pretty good idea of where I stand PFT wise. I don't know about all of you, but that's definitely the part I always look forward to come clinic time. I must add however that I'm certainly not doing what's best for me or best for my clinic. It's obviously a better situation if they're able to track me more closely and if you want to get down to the nuts and bolts of it - it's better for the center. Every CF clinic relies on outside funding to stay afloat, so the more patients they treat, the more money they get. If I'm not going to clinic, I'm not getting counted, therefore they don't get all of the money they deserve (do you see where this is going?). If they don't get the money they deserve, it not only affects me, but all of my great friends, including the doctors, at my clinic. Get it? Got it? Good!

As promised, I showed up to clinic yesterday looking forward to what they had to say. I've been off of my game for quite some time now because of all of the bleeding, so it's always a touchy situation heading in to see the docs in that condition. Like I told them, it's not that I feel terrible, it's that I haven't been able to "do me" for almost 3 weeks now. By that I mean I haven't been able to be as active and workout like I'm used to and it can obviously catch up in a fairly short time. I saw them 2 weeks ago (at a drug trial) and expressed to them that other than coughing up blood, I felt pretty darn good. I wasn't very tight, my cough was stable, my mucus was clear and my energy was up. Yesterday I had to report that the blood is still an issue and now the 3 weeks of not working out is starting to catch up to me. I find myself tighter than usual. My mucus is becoming thicker. My cough is deeper, yet it's harder to move the gunk out. The sucky part is, I don't feel it's a result of CF as much as it's a result of me not being able to keep CF in check. And that is very frustrating.

I'm a "let's solve the problem" kind of a guy instead of sit around and talk about it. This happens to translate very well to my CF life as I'm able to look back on the past and pick out stuff that's worked for me health wise and stuff that hasn't. Once I identify what works, I don't go on and on about what I should be doing or what I wish I would have done, I strap up my boots and I go for it. Right now, I find myself in a situation that I can't "go for it" and it pisses me off. My bleeding has become so frequent that I'm not able to do full strength Vest treatments. When I bleed, I stop Pulmozyme for a bit and I stay off 7%. Exercising is out of the questions. Do you see how this can be a problem? Talk about a better way to feel worse! Believe me, this is it.

Some of you are probably saying, "well, why don't you get your butt into the hospital then???". To you I say, you guys are 100% correct. I present myself as a no-excuses kind of a guy and I feel like a hypocrite for putting it off. But part of who I am is to be open and honest with this blog and use it as a way to hold myself accountable. An even bigger part of that is acknowledging when I'm going against my own advice and call myself out on it. So that's exactly what I'm doing. Let me be loud and clear, I should be going into the hospital and nipping this whole thing in the bud. I should put my health before all other things I have going on, because without my health, I have no other things. I should stop, listen to my body, and take care of this bleeding issue so I can get back on the road to booty kicking.

With all of that said, let me tell you why my hospital stay is being delayed. I want to be a daddy. Mandi and I have been going through the IVF process for a good two months now and it's getting into crunch time. "My part" is coming up in the next 10 days and I have to be available when I get the call. Depending on how Mandi's body responds to those big old shots we started giving her, I could be called for my sample anytime between February 5th to February 10th. It's kind of hard for them to take my baby batter out (if you were unclear) up here in Phoenix if I'm down in the hospital in Tucson. And even more important to me than that, 6 days after they get my sperm, they will be implanting an embryo into my wife. Every piece of my being wants to be there for her on our special day. I realize that the creation of our family is very unorthodox and it's not just a matter of a bottle of brandy and a hot tub, therefore, I want to be as much a part of this as possible. Make sense? Maybe not to you, but I know to us it's very important.

So there you have it, an update from clinic. As always, could be better, but it could be worse. I'd love it if you guys could keep us in your prayers for the next few weeks. Please pray that my bleeding lessens and that my health holds up until I can get into the Hole. Also, please pray that the rest of this IVF process goes smoothly and, God willing, we're able to start our family. Thank you guys so much for your support, your prayers and the continued reading of this blog.

Freak Things Happen

So today Mandi and I were running around to doctors appointments, relaxing and, of course, observing MLK day the best that we could. Earlier in the day we had a fertility appointment to make sure that Mandi's eggs were still looking good and to go over how to give the shot that looks like a horse tranquilizer (I'm kidding, it's not that bad). We were also able to sit down with the doctor and go over some details about the whole process, which I'm sure we'll get into with you guys soon here on the blog. Just as a teaser though, stuff like how many eggs to fertilize, how many embryos to "put back" and what to do with the embryos we don't use at the moment. So as you can guess, it was quite the conversation, but we'll save it for another time.

Back to the part when we got back from the appointment. Wait a second, first let me set this up a bit. I've been feeling great. Mandi and I have been eating better. We've gotten back into the gym. We're getting back on track with exercise. I'm doing my treatments consistently and faithfully. I've noticed that my cough has decreased over the past couple weeks and my mucus has gotten lighter. All in all, no complaints, and I'm feeling pretty good. Now, I said all of that to say, today I coughed up blood, and a lot of it.

It was the weirdest thing. We pulled into our garage and just as I was getting out of the car, I felt it. It's a certain rattle that we get in our chest just before the blood comes up to play (you CFers know what I'm talking about). I walked out of the garage, coughed and spit. Sure enough. Bright. Red. Blood. I immediately made a dash for the bathroom sink because I didn't want to stain my rocks in the front yard! :) I coughed and coughed and coughed, each time bringing up the good stuff. There are different kind of coughing up blood episodes, those that just make your mucus a bit red and those that look like a murder scene. With each cough, blood splattered into the sink, and I'll I could do was hope that my aim was good. About 5 minutes and 1/2 cup of pure blood later, it stopped.

Ok, now what's the point? The point is, stuff happens. Stuff happens that we can't explain. Good stuff happens. Bad stuff happens. Life would certainly be a lot easier if we could explain everything, but it'd also be pretty boring. In this CF life, unexplained stuff can happen often. I think the key though is not what happens, but how we react. I didn't panic. I didn't get mad. I didn't stress out. Stuff happens. Stuff happens and we move on. Sure, I adjusted my treatment regiment today to try to prevent more blood, but other than that, I wake up tomorrow and I move on. I'll make sure to get four treatments in. I'll make sure to pay close attention to what my lungs are saying. I'll let my doctor know what's up on Wednesday when I have my (drug trial) appointment. Other than that, I do nothing different. I've been good lately about doing what I have to do to kick some CF booty. Faithful with my treatments. Faithful with exercise. Freaky stuff can still happen.

So I move on.

Workout Week In Review

Here's a little update about my workouts this last week...

Monday - I had a short walk, short as in 15 minutes, before my Pulmonary Function Test. They also sprang me from the Hole on this day. Yippee!

Tuesday - First day out of the Hole, so I wasn't expecting much. We decided to really push and run/walk a preselected route in which we did not know the distance. It went better than I expected it to go.

Distance: 2.35 miles Time: 40:00 Pace: 17:00

Wednesday - Selected a new, shorter route with the hope of improving my pace. Had some blood issues about 2 minutes into the run, but it never got that bad so I pushed through. This was a sprint/run/walk and I improved my pace by almost 2:30 minutes!

Distance: 1.8 miles Time: 26:00 Pace: 14:27

Thursday - Decided that I would sprint/run/walk the same route with the hope of bettering my pace from the day before. Mission accomplished.

Distance: 1.8 miles Time: 22:23 Pace: 12:26

Friday - Last workout before the weekend and this one was a doozy. I accompanied Mandi on her 4 mile run...but let me point out that I was on a bike. Nevertheless it was a 44 minute bike ride followed immediately by a sprint/run/walk of my own. I didn't really know what to expect, but I must say, I was pleased with the results.

Distance: 1.8 miles Time: 20:52 Pace: 11:35

All-in-all it was a great week for me. Only had one small bout with hemoptysis that seemed to just take care of itself. I was able to improve my pace everyday which I am very proud of. I'm hoping the trend will continue.

By the way, I also track all of my workouts on a site called dailymile.com. If you'd like to become my friend on there so we can challenge each other and hold one another accountable in our workouts, go to http://www.dailymile.com/people/RonnieS to join and become my friend!

First Run in a Long Time

Today Is the Day!

Today's the day that I start training for my half-half-half-marathon (for those of you doing the math at home, I believe that's around a 5k...at least that's my hope!). I haven't been able to run for the past few months, at any real pace, because of some bleeding issues. The hope is that they've been resolved during this hospital stay and that I'll be able to start pushing it again. Now, I don't want you guys to get the wrong impression, I certainly haven't been sitting on my booty for the past three months. There were still daily bike rides, walks and trips to the gym, but I was just never able to really take it to the next level. Every time I would put A LOT of strain on my lungs, Mr. Hemoptysis would knock on the door. That can happen. I understand that it can happen, but I don't like it. That's one reason I was so excited for this trip to the Hole. I knew I needed it, not only for my lung function (which by the way has almost returned to my year high), but also to get me back into the position to run again. I may hate running more than anything else in the world, but I still miss it.

So here's what I'm asking you to do. I WILL go for a run later on today. Can you check in with me before you go to bed and call me out? Make sure I run today? There's no doubt in my mind that I will lace up my shoes and run, but in the off chance I need some extra motivation, I want to know that you guys will kick my butt if I don't.

Thanks guys!!

The Evidence of Blood Splatter

I don't really know how to say this without it sounding really strange, but if I turn up missing tonight and they suspect foul play, Mandi is not involved. Strange enough for you? Maybe I should take it from the top...

So this probably all started last Monday as Mandi and I recommitted to working our butts off in the gym. This includes morning walks, lifting weights at the gym, running and increasing our overall activity. This is good for us on two fronts: one, for obvious reasons, it's a good thing for my health and two, it gets us out of the house in which we seem to be in all day. Not that I mind, since it's actually what I prefer, but I must admit, we can get a little bit of cabin fever after working out of the house every hour, of every day, of every week, of every month. We've actually found a little local coffee shop, called, wait for it, "The Coffee Shop" which Mandi LOVES to hang and work out of. It is definitely a cool place to get some stuff done, but obviously at 1.85 a cup, we can't make it a daily habit. So anyway, I'm getting a bit off track, so let me get focused again...

...and I'm back. Last week I had a bit of hemoptysis before my clinic appointment. My doctor and I weren't very concerned however cause I'm doing well symptom wise on all other fronts and was just starting my Cayston, so we figured, if there was a bug going on, the Cayston would kill it. Now fast forward a week or so after that appointment and I had another bout with hemoptysis. And then finally, let's bring it all of the way to tonight, another episode. What's a little strange is all of these episodes have happened while I've been standing straight up. You say, why is that strange? Well, because 9 out of 10 times I'll start coughing up blood while laying flat on my back and usually in the middle of the night. So, it's a little strange that these have come while either walking around, or like tonight, making my nightly vanilla latte. I assure you, I'm not overly concerned, it's just a bit strange.

There could be a very logical explanation however, actually, could be a couple of them. First, I really think my rib injury set me back a bit and may have led to the irritation that has caused the bleeds. I know at times, I'll take a deep breath and can actually feel my lung rubbing up against my ribs. Can that cause hemoptysis? I don't know, but I wouldn't bet against it. Here's the other and most likely scenario though, it's probably the exercise. We've been hitting cardio hard and that's made me open up parts and use lobes that probably haven't been worked like this for a while. Today in fact I absolutely went all out on the elliptical and haven't challenged myself like that physically for quite sometime. So, if I were a betting man, I'd blame it on the exercise. That's not to say anything is going to stop, but it will certainly change tomorrow. I'll have to back off just a bit and make sure everything is all healed up before I push it again.

This brings me back to my first statement, Mandi is not guilty! I say this because we are big "murder show" buffs. On our DVR, 90% of it is First 48, 48 Hour Mystery, Primetime Crime, Dateline, etc. On most of the shows, what dooms the husband or wife when their significant other turns up missing is microscopic blood spatter. We just got done watching one in which they convicted a husband that was totally and obviously innocent, so it got me thinking...If I turn up missing, the cops are going to find a ton of blood splatter all over our bathroom. You may even find some on her clothing because she was standing right next to me and rubbing my back as I was coughing my brains (or my lungs) out. So, if you're reading this, she didn't do it, she's completely innocent.

Mandi, if you're reading this, don't get any ideas just because I've given you an alibi :)

There Will Be Blood

Yesterday was a good day! It started off with a morning walk in which I painted the city streets gold with my mucus (although it was actually pretty clear). I can't stress enough how good it feels to get a walk in first thing in the morning. I know I sound like a broken record to you regular readers, but if you're thinking about starting an exercise program to improve your lung function, start there! You'll never cough up so much mucus!! I was just chatting with a fibro over on CysticLife who just made a morning bike ride part of his routine and he is AMAZED at the difference in how he feels the rest of the day. I just think it's so important to get the mucus up and out that has just been sitting there as you sleep at night!

Jezzabel and I also had a great time down at the wash! It was hotter than normal so she didn't have her usual stamina, but it was still a good time. We did a couple of sprints together and then apart from her trying to chase down a bird, it was pretty uneventful. Actually, I just thought of something. While in the wash I picked off a cuticle from my right pinky finger. It proceeded to bleed like CRAZY. We're talking blood dripping from my finger crazy! Anyway, I made my way back up to Mandi's house and proceeded to convince her and her mom that I had gotten bit by a snake while trying to protect JBell. They bought it hook, line and sinker.

Finally, I wrapped the day up with a nice run. It felt 1,000,000 times better than yesterday, but it was not without a slight hitch. My lungs felt great. My legs felt great. And I was keeping a nice pace. Problem was, about a mile into the run I had a very hard cough that ended up producing some blood. I kept running to make sure it wasn't a fluke, but after 3 more gobs of blood and mucus came up, I decided to slow it down to a walk. Hey, it happens. No reason to panic or get upset. I just made sure that I continued to cough until all of the blood was cleared and then I'll be back on the road tomorrow. This is just one of those times not to make a mountain out of a mole hill. Blood happens. Deal with it and then move on :)

Thanks again for all of the encourage words yesterday guys!! It really pumps me up and motivates me to get all of my workouts in!

My First Experience with Hemoptysis

**Reposted from August 2009**

I present to you the first edition of First Friday. I believe this idea came from Casey who wrote a blog about his CF "firsts"(click here to view) a couple weeks ago. Here are some examples of other's "firsts" blogs (that sure was a lot of the letter "s" at the end, how far off was I grammatically?) from Piper, CysticGal, Chrissy and Megan (if I missed yours and you'd like to be included, please shoot me an email and I'll add it).

What I've decided to do is highlight ONE of my CF firsts every Friday and try to capture exactly what happened and what I was feeling in that moment. It can be very scary experiencing something for the first time, so hopefully you guys can use this and other CFers' blogs as resources when those times occur.

My first bout with hemoptysis reared it's ugly head at about age 12. I distinctly remember coughing up so much junk that I ran to the toilet to spit it out. Now, for me, that was a big deal. Back then it didn't bother me at all to swallow mucus that I had coughed up from out of my lungs. Today, it's a different story, and I try to spit it out into a tissue (or on my floor). But this particular coughing festival produced much thinner mucus than I was used to and it did taste a little different than normal, plus, it was filling up my mouth. So I ran to the toilet to spit it out. Low and behold, my mucus was red. First I thought, "man what did I eat that made my mucus so red". Remember, I was a kid, a healthy kid, and hemoptysis wasn't even in my vocabulary.

As I leaned over the toilet and continued to cough up that lovely warm red stuff, it hit me, "Wait a second, it looks like blood and now it tastes like blood, hmmmmm, it must be blood!" Here's the deal though, I didn't panic. I don't know why and I still can't fully explain why I don't panic now 17 years later when I'm coughing up CUPS of blood (although I admit, coughing up multiple cups of blood while in CHINA, didn't produce the calmest of emotions). Back then, I remember thinking "this is kind of cool". I don't even think I told my mom or grandma (I was at her house when this happened) about the episode. I'm not a big fan of having people (especially my mom) worry about me. I do however know that people (especially my mom) worry about me already without bringing anything else to the table.

What's strange, is I didn't have another case of hemoptysis until well into high school or maybe even until college. After the age of 20 though it was pretty common for me to have a bout or two in between hospital stays. I would usually cough up around 1-4 tablespoons per bout. In recent history, I've been embolized twice for the hemoptysis, in November 2005 and February 2009. Both procedures were considered a success and I had very little bleeding between the two embolizations. Since February's procedure I have coughed up blood twice, but it was very little and during a run.

So there it is, my first experience with hemoptysis...wanna tell me about yours????

PS- I'm hoping to get no responses because none of you have ever experienced coughing up blood :) I can hope right?

The Ebbs and Flows of Running

We can't always predict how our workouts are going to go from week to week, but what's important is that we keep moving forward. Sometimes we can let what should be a small setback turn into a large one. It's so important to set your goal and do absolutely whatever it takes to accomplish it.

I'm Sick and it's My Fault

So I head in for some PFTs today (just as a formality) so I can get myself a bed in The Hole ASAP. I've definitely taken a hit this last month with my overall health. If you remember my post from last week, my PFTs were also down about 10% from last month and I'm having hemoptysis. I knew that I was going to have to get in sooner rather than later, but I was hoping to hold off until after Thanksgiving. It's gotten to the point though that I know damage is being done and now I just have to nip it in the bud. The biggest problem has been my lack of energy. And with me, a lack of energy can be a killer...well, let's hope it's not that bad :)

Everything kind of slowly goes downhill when I start missing my runs and workouts. With all of the traveling I've been doing lately, my schedule has been all over the place. I mean, I brought my running shoes to Dallas with me, but did I use them? NOPE. And that's completely on me. I can't blame lack of time. I can't blame weather. I can't blame how I feel. There's nothing to blame but the guy I see in the mirror everyday. Cause here's the deal: I've managed to run when I had even less time, there was worse weather AND I felt even crappier. So there is only one thing left to blame: Ronnie. I've made choices over this last month that have allowed my lung function to slip. I could have pushed harder. I could have scaled back on work. I could have went to bed earlier. There's a million things I could have done differently, but I chose a different way.

Now I have another choice to make: I can sit here and sulk and wonder how things would be different without CF or I can learn from how I'm feeling right now and realize that I don't like it and I CAN control the outcome next time. I'll pick option number two. If I sit around and wonder why, I'll be wondering the same things on my death bed. I don't see the point in asking a question that really doesn't have an answer...and to be frank, if it did have an answer, I wouldn't care what it is. All of this "feeling sick" crap is what actually makes life even more interesting for me. With everyday that passes, I'm learning a little more about myself and my opponent. The fact that I get to face a "challenge" everyday is something that I thrive on. It drives me like you would never believe to prove all of the statistics, numbers and nay sayers wrong. If I lose this challenge, I can guarantee you it won't be Cystic Fibrosis' fault...it will be mine.

Down, but NEVER Out!

So as many of you know already, I took my PFTs again yesterday. Would you like the good news or the "bad" news? I'll go ahead and give you the "bad" news first. My PFTs were down. They went from a FVC of 83% and an FEV1 of 68% to 73% and 60% respectively. Now, here's why I say "bad" news. I of course never ever like it when my numbers go down, but this can actually be explained.

I just ended a cycle of TOBI. Want to guess what my PFT numbers were after my last cycle? If you guessed almost identical to what they are now, you'd be correct. When I blew my PFTs out of the water last month, I was on my off month of TOBI. So what does this mean? Well, one of two things: it's either pure coincidence or TOBI bothers my lungs while it's in there killing the bugs. I'm going to have to go with what's behind door number two Pat! I always feel a little "off" during my TOBI months. I'm usually achy, have hot flashes and generally feel more tired. It also probably didn't help my numbers that I was traveling so much this month and I hacked up some blood last week. So, that's the "bad" news.

Good news you ask? Like one of my Facebook friends said, this gives me the opportunity to "recalibrate and recalculate". I love that by the way Kelly! That's the first thing I thought when I blew those numbers (not in those exact words of course, those are yours). I was thinking, alright Ronnie, let's figure out what you did or didn't do this month that you did or didn't do the month before. Where do I start? Like I said, I was traveling a lot this month. Traveling means less consistent exercise, less consistent treatments and less consistent sleep. Well I'd say that's enough to send my lung function down 10% right there! Now it's up to me to make a new battle plan for this month and stick to it. No excuses!

I never take these "bumps in the road" lying down. If CF raises me some bad PFTs, I'll re-raise him with more exercise. If CF raises me with tiredness, I'll re-raise him all-in with increased treatments (Sorry for the poker analogies). Point is, I'm willing to do whatever I have to do to maintain and increase my lung function. I know that the investments I make now, will pay off in the future. For me this month, it may mean a hospital stay. If we're going to be honest, my doctor wanted me to get a bed in The Hole tonight. He's concerned with my drop in lung function + hemoptysis + other symptoms. Unfortunately, I can't go in tonight. I'm traveling to Dallas on Friday to be part of the CF Concert Series. If I get more sick by making that choice and pushing off a hospital stay, then it's on me. I'll have nobody to blame, including Mr. Cystic Fibrosis, but me. When it comes down to it, life is choices, and I am alone responsible for every one that I make...

...but yeah Dr. Martinez, I'll take that bed next week!

Remember to BREATHE

The photo above is of my CF Awareness bracelet

To be quite honest, when I work out, I often forget to breathe. But that's the whole point isn't it? At least for me it is. I'm trying to challenge my lungs and force them to take in more air than they're used to. While I'm running, Mandi will wave her hands around to get my attention (so I can remove my ear buds) and then make these huge breathing motions while telling me to get my breath under control. It really helps. Often times, I think it's still a mental block that "tells me" that I can't possibly get in any more air. I think to myself, "man am I tight, it feels like I'm in a bear hug" and the conversation ends there without me actually trying to take in a deep breath. When Mandi forces me to focus on my breathing, all of the sudden I can take big ol' huge breaths. Now, it's hard and it is often followed by a ton of coughing and mucus to follow, but again, that's the point right?

Many other people could answer, "you know, all of this painful coughing, I'm not doing it for my health" (in a snide kind of tone), but of course, we (CFers) are in fact doing it for our health. It's painful and it's not fun, but at some point you just have to make the decision that you'll go through some pain in order to get some lung function back, or at the very least, stop the plummeting PFT numbers. While you're doing it though, just do me one favor, remember to breathe. Your lungs will thank you for it.

Thursday: Walk 2 minutes, Run 5 minutes (4 cycles)

Friday: OFF

Saturday: Biceps and Back (no running due to hemoptysis)

Sunday: Pool games and breathing exercises in water

Monday: OFF (Travel and clinical trial)

Tuesday: Walk 2 minutes, Run 8 minutes (3 cycles)

As you can see, it was kind of a funky week. I started coughing up blood during my run on Thursday, but it was streaked with mucus, so I wasn't very worried. By the time my run was over, about 25 minutes later, the blood had stopped and my mucus was back to yellowish-clear. It wasn't done rearing it's ugly head however as I woke up around 3am Thursday night with a mouth full of blood. I coughed up about 2-3 tbsp of pure blood that night and have felt a little off since. I took off my other running day to let my lung heal and recover. Whenever I have a hemoptysis episode of pure blood, I usually feel sick for a little bit. I'm not quite over it as of yet, but I'm on the up and up. During my clinic appointment on Monday, my doc asked if I wanted to come into the hospital for a quick burst of antibiotics. He's worried about the drop in my PFTs (almost 10% in 10 days) and my drop in energy. I politely declined and told him I would fight my way back. I'm confident that after giving myself a few days to recover and then getting back on track with my workouts, I should get my numbers back up. I go back to clinic on September 11th, so only time will tell. I'll of course keep you guys posted!

To see pics from previous weeks, please click here, here and here.