Tuesday, February 1, 2011

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.

Comments (19)

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Man Ronnie looks like your caught in between two major issues. How has your PFT been? I would say if you are able to keep it in check then maybe you can hold off on the hospital stay. Just remember to "listen" to your body and you truely are the one who knows how you feel. Man I don't know what sounds worst in terms of pain....the baby batter extraction or the hospital stay. Well wishing you and Mandi the best!!!!

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
1 reply · active less than 1 minute ago
My Fev1 was 65% two weeks ago which is about 10% off of my 2010 high.

I still have my gallbladder. They've identified some "sludge" in it but have never been too concerned.
hey guys! I am lifting both of your bodies up in prayer!! We serve a God who is so powerful and I am praying he will work little miracles in your lungs this week(shoot not little BIG why put God in a box right). I am praying in faith!!!! I know what you mean about wanting to be there for Mandi. Jason was with me for our adoption and implanting our little embryo and it was AMAZING to be apart of so we are praying you are able to be there for all of it and that the Lord would not only stop your bleeding but thin out your mucus and loosen up your chest as well as do some healing work on your lungs!! Praying in faith my friends for you guys during this exciting time! Super excited for you guys during this time knowing a ton of what you are going through! Sending our love and prayers!!!
1 reply · active 739 weeks ago
Thank you Kellie.
Hey! Lungs! STOP BLEEDING!
We did fertility stuff (not IVF, tho). So, I know where you are coming from. Hope all goes well and you guys get preg the 1st go round!
Figured I'd answer this for you :) I think the predicament stinks big time, and I have asked him several times, "are you SURE you don't NEED to go in?" But honestly, we've come a long way with this IVF process, and we can't delay the cycle, we would have to end it - which would mean the last month of meds would be wasted, and we'd have to start all over. It is a possibility that he could go in after they take his "contribution", and I could find someone else to take me to the egg retrieval and transfer. I'm ok with going to the transfer alone, but I would be really sad if he couldn't be at the transfer, I hate to think I would "get pregnant" without my husband there. So we're going to try to keep him as healthy as possible to hopefully keep him out the extra few days. All that said, health comes first. And if his doctor said, "I really think you should come in NOW" then we would have cancelled the whole cycle - but the docs seem to think he'll be ok waiting a few weeks!
Prayers being said for you and Mandi and hopefully a new little one!!!
Ronda Dell'Ario's avatar

Ronda Dell'Ario · 739 weeks ago

Praying for both of you. CF sure isn't easy, but God's bigger than CF!!
1 reply · active 739 weeks ago
Thank you for your comment Josh. If I, or my doctors, thought for one second that I was taking a big risk by staying out, I would go in in a heart beat. My doctors exact words were "I'm of course no fortune teller, but your risk for a massive bleed is minimal". One issue is that I'm not showing a whole lot of other signs that would warrant treatment. I don't have a huge increase in coughing, mucus, etc and my mucus is still clear to yellow. They don't believe that I have a large scale infection going on. They even debated doing an embolization on an out patient basis, but decided the risks (becoming sicker as a result) weren't worth it.

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.
I totally agree, Josh! I think Ronnie maybe didn't do a very good job exposing what his doctors opinion and suggestions were in this instance. Ronnie always goes into the hospital on the WAY early side of necessary. The second he feels anything he goes in - often earlier than his medical team would say, "ok, it's time to come in." In this instance, he he pushing it out by a week or two from when HE would have wanted to go in. His doctors said he's still moving air well and his symptoms, other than the blood, have not increased. In fact, his doctor said the amount of blood he's coughed up wouldn't warrant an embolization even. Also, he says he hasn't exercised in 3 weeks - but he's referring to his typical routine - we have been doing light excising - we walk about 2-5 miles a day. So we are trying to do what we can.

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!
Frances Johnson's avatar

Frances Johnson · 739 weeks ago

Ronni and Mandi first you both are in my prayers. Second what a predicament to be in for you both (this blog actually brought tears to my eyes because I can tell how much you both want this). Just wondering what if anything they suggested to do in the meantime to help with the bleeding and to help you be you?
My prayers are for you and your wife and hopefully soon to grow family. My daughter past away in 1999. I think you 2 thought alike. I would like to talk to you on the phone some time if possible in the midst of your hectic life.
Hey Ronnie and Mandi-
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

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