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Today at lunch Ronnie and I were just discussing the busy couple of months we have coming up in our lives. My brother, Josh, is getting married, Ronnie goes out of town to speak at an event in Albany, Ronnie needs to get in for a tune up, we have wedding prep, our wedding, and our honeymoon. We had tentatively thought through timing of it all, but we hadn't talked about it all since Ronnie's trip to Albany was scheduled. As we started chatting, we began to realize it was going to be a TIGHT squeeze to get Ronnie's tune up in. Josh's wedding is March 28th, and he is standing in it, so he can't go in until after their wedding. Then, Albany is April 16-17th, which means he can't go between Josh's wedding and Albany, because that's only 2 weeks. We get married May 22, which means if he goes in after he gets back from Albany, and stays 26 days (4 days under his typical stay). That would get Ronnie out 1 week before the wedding, just enough time to help with last minute plans and moving all of our stuff into his condo or into a new house (details on the house hunt possibly next week). Talk about a TIGHT squeeze. If anything goes slightly wrong while he's in, it could get interesting for the wedding day. But, we need to do it that way. The hospital stay needs to happen, so we're going to make it happen, and trust that everything will go smoothly.All this to say, we truly believe that hospital stays are IMPORTANT. It is CRUCIAL to be proactive and not reactive when it comes to taking care of CF. Could we push off the stay? Yes. Could that result is him getting sick and causing irreversible damage? Yes. Is it worth that? NO. A little frustration and a little uneasiness about timing and scheduling is well worth preventing potential, long term damage. I would love Ronnie to be around the month before the wedding to help with last minute planning, errands, moving, etc. I will be forced to do a lot more work, and potentially all of the work, but one month of more work on my end and missing my fiance is well worth maintaining his good health and lung function. So I'll take it. Ronnie is being proactive and not waiting until he's really sick to go in, so it's likely that his stay will be nice and quick, and he'll be out and feeling awesome for the wedding and honeymoon. So we're going to work really hard this next month so he goes in as healthy as possible.
Logging you in...
Brandi · 786 weeks ago
Shannon · 786 weeks ago
Shannon 30 w/cf
Jesse Petersen · 786 weeks ago
The thinking here is that they don't want you in the hospital unless your life depends on it that moment because they don't want any exposure to MRSA. 'Sup?
RunSickboyRun 96p · 786 weeks ago
I've never responded to home health like I do to the hospital.
My docs are not huge fans of home health.
A big thing for me getting better is rest. I don't have the discipline to rest a home :)
I already have MRSA :)
One of the days I'll probably give home health another spin, but today will not be one of those days....
Ronnie
Jesse Petersen · 786 weeks ago
RunSickboyRun 96p · 786 weeks ago
unknowncystic 11p · 786 weeks ago
I'd like to suggest a future post from you. Can you get your cf team to give an explanation of this four-month rotation you're on? It's interesting. I've never really heard of it before. My docs are the opposite. I have to be dying before I go in for IVs. Are yours concerned at all with resistance? I do get the logic of maintaining lung function because the day is coming when we're going cure this disease and we'll all be stuck with the lung function we have at that moment (kind of like a game of musical chairs - when the music stops . . . ).
So, if you can shed more light on the logic of this strategy, I'd be interested in knowing more. Also, you remind me of all those great characters in prison movies - the ones who get put in solitary for six months but take it like men and pop out stronger than ever. 26 days in the hospital? YOU'RE THE MAN!
bankrgrl · 786 weeks ago
Kristi · 786 weeks ago
Jesse Petersen · 786 weeks ago
Since the 7th grade, we've done home health. Man, have things ever improved. I used to need a portable syringe pump to infuse my meds over a period of time, but now the latex balls are awesome and can slip in my pocket and I leave the front of my shirts untucked. I've even been on IVs and my immediate family didn't know, because the system is THAT good.
Why don't I go into the hospital? Several reasons on this end:
1) I've had a full-time job since I was 18 (I'm now 31, married, and have a mortgage, yikes!). I just can't take the time off to go into the hospital or I'd lose everything.
2) The doctors here are really big on keeping us out of the hospital because of MRSA. I already have a pretty heavily resistant pseudemonas. My treatment they put me on IVs with now is tobramyacin Q24 and Dorabax Q8. I'm definitely losing some hearing qualities after so many rounds of tobramyacin. I'm never on more than 2 weeks unless the gram-positive and gram-negative bacteria start to fight in a teeter-totter effect half-way through treatment. Then I'm on for 3 weeks total.
3) I just can't rest in the hospital. The nurses piss me off (do you really need to wake me at 1am and ask me if "sleepy sheet marks" on my skin during the night is normal for me?) and need constant attention to make sure they don't kill me. I also don't get any good food there. I lose weight every time I get out... after the IV fluids get flushed out and I return to a normal state of hydration.
I think it's cool to see the various treatments people have and figure out which are because of doctors and which are due to the genetics involved.
Summer · 786 weeks ago
RunSickboyRun 96p · 786 weeks ago
hattie · 786 weeks ago
are you starting to feel crummy again?
or do you go in for automatic tune ups at a schedualed amount of time, even if you are not feeling bad?
RunSickboyRun 96p · 786 weeks ago
hattie · 786 weeks ago
do you have a port? or do you get a picc in every time?
RunSickboyRun 96p · 786 weeks ago
Laura · 786 weeks ago