
Tuesday, February 1, 2011
An Update from Clinic - It's Crunch Time

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.
Labels:
Blood,
CF,
Cystic Fibrosis,
Family Creation,
Hemoptysis,
Hospital Stays,
IVF
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An Update from Clinic - It's Crunch Time
2011-02-01T01:00:00-07:00
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Blood|CF|Cystic Fibrosis|Family Creation|Hemoptysis|Hospital Stays|IVF|
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John · 739 weeks ago
P.S. I am going to have my gallbladder removed this friday. I was wondering if you still have yours? I guess its pretty common for CFers to have this removed.
John
RunSickboyRun 96p · 739 weeks ago
I still have my gallbladder. They've identified some "sludge" in it but have never been too concerned.
kellie davenport · 739 weeks ago
RunSickboyRun 96p · 739 weeks ago
Jesse Petersen · 739 weeks ago
christy · 739 weeks ago
Camille Stellar Fontana · 739 weeks ago
Mandi · 739 weeks ago
Rita · 739 weeks ago
Ronda Dell'Ario · 739 weeks ago
RunSickboyRun 96p · 739 weeks ago
@w2joshland · 739 weeks ago
So...I understand schedule wise with IVF why it's important to collect your "fellas" so to speak. I understand that you want and will some day be a daddy. I understand that being there for Mandi and doing this together is important. But at what cost, Ronnie? How much damage are you doing to your lungs by no going in when you are coughing up blood. That is not a good thing. I understand not freaking out when there is a little bit of blood. I've been there. However when it's constantly happening for weeks, that tells me you need to go in. You could (and I say could because we both know we have no idea or control over what is happening sometimes, we just treat it) be causing major permanent damage to your lungs which could ultimately lessen your time with your child and your wife. Just being honest.
I also commend you for being honest and saying "do as I say, not as I do", but that seems to be the exact opposite purpose of RSR. Telling people to do one thing for a long time when in a situation, and then not doing that same thing when it comes up for you is...disappointing.
That being said...to each his own. I know starting your family is important and I can't say what I would do in your predicament. It's one of the reason I don't know if I could be a father. I would probably do the same thing. I can't say the discussion hasn't been had at my house. Ultimately, if the docs think you'll be okay, so go do what you need to do. You need to do what is best for you, just as we all do...CF or not. Just be careful, man. Life with your new child will be amazing, but you want to be there to experience it for as long as possible. I'm guessing your kid and your wife would agree.
My question is...and I know you don't care for this solution, but... why don't you try to get on home IVs until you can get into the hospital? I know there could be several issues with this that I have not clue about (insurance, time management, drug reactions with the IVF process, etc), but that seems to be a possible fix that you haven't mentioned.
Good Luck, Peaceful Things and Big Hugs to you both.
RunSickboyRun 96p · 739 weeks ago
I understand your disappointment, but one common theme to this blog is "owning" your CF and your decisions. I've never told somebody in this situation what to do because I've never spoken to somebody in this situation. However, I speak to a TON of CFers who simply choose not to do their treatments or attempt to exercise. I'll continue to beat the drum of taking care of yourself and not making excuses. Life is choices. If I get sick as a result of this it's nobody's fault but mine- not CF's, not my doctors', not my situation's- it will be entirely on me and me alone. I'm not a victim in this, I'm a willing participant.
@w2joshland · 739 weeks ago
Guess I felt like your blog today portrayed a different, and in your own words, hypocritical attitude from anything than I have ever read or shared on RSR regarding you thoughts on being proactive with YOUR personal CF care. Because you are a role model to a lot of people in the CF Community, something about your words just didn't sit right with me. Then again, this is your blog and I'm not judging. RSR a personal perspective, opinion, and journey of one individual with cystic fibrosis, just like mine and the thousands of others on the internet. You have the right to post whatever you choose and I respect your ability to do so honestly. As you said, you are a willing participant and not a victim. I never thought you were anything different.
Peaceful Things.
Mandi · 739 weeks ago
I will be honest, part of Ronnie putting it off by a week or so is because of me - although he'll never admit that. He knows how geared up and excited I have become for this IVF cycle. Not to mention it's a $15,000 process - so we are not only emotionally invested, but financially invested as well. If we're all being honest, I have a feeling that if I called it off and said, "go in, honey" he'd be there in a second. And I've half-heartedly made those comments, but he knows in my heart of hearts how upset I would be. When it's necessary for him to be in the hospital he goes in - it doesn't matter what is going on...he's been in over birthdays, valentine's days, anniversaries, when we closed on our house, when I first got the keys to our home, when we've had vacations planned, you name it...but it's a little different when it's not 100% necessary and we're just a few steps away from finishing something that we're very, very financially and emotionally invested in. All that said, if it were very necessary, it wouldn't matter how emotionally or financially invested we were - he'd be there.
If his doctors felt it was totally necessary to go in, we would have stopped everything and gone down - but with his doctors' lack of real concern, we figured we could push it from "Get in super early" to "Get it on the late side of ok."
Hope this helps clarify. I think this blog didn't do a great job really explaining the situation. Dang Ronnie and his vague writing ;-)
Big Hugs!
@w2joshland · 739 weeks ago
Based your story and the stories I've heard from other CFers, IVF is clearly not a cut and dry decision. Many issues factor into it and I can't even fathom how much you both have invested on several different levels. I don't know what it's like to go through the IVF process and all the large decisions/sacrifices that come with it. That would be pompous of me to pretend otherwise until I've gone through the situation myself. Even then, it's a personal decision. In the few times we've spoken, I know how passionate you are to start a family and I say more power to you. Live the dream and be happy. Your readers want the best for on all fronts.
Peaceful Things.
Frances Johnson · 739 weeks ago
Jo Goetz · 739 weeks ago
Emily · 739 weeks ago
I'm praying for you both. I know from experience that living with CF and having a family presents some very difficult decisions that need to be made at times and I will be praying for healing, wisdom and comfort as you go through the next few weeks.
Blessings,
Emily