Okay, so I know I've been terrible about updating the blog lately. I really have no excuses for my bad blogiquette, except for the fact that I'm finally feeling good (actually, the right word might be "wonderful") and have been seriously enjoying the process of coming "back to life" after so many revolving door trips to the hospital and so much health drama. I guess actually living leaves less time for my blog than sitting in a hospital room does -- go figure -- but I think it's a sacrifice I can live with.
In other words, it's nice to finally be normal again (even if the definition of "normal" in this case includes jumping about 5 feet every time my phone rings b/c I think it might be "THE Call"). I'm still on IVs, but just Merrem, which I guess is the one antibiotic that seems to hit both my lungs bugs and the silly little critters that decided to infect my now absent port. My doctor and I had talked about stopping the drug on the 1st, which would be tomorrow, but seeing as my homecare company just delivered WAY more than one day's worth of new eclipse balls, I'm thinking I'm in this for the long haul. It's not particularly surprising -- there was some debate about whether I would need IVs for 4 weeks or 6 weeks to totally clear up this blood infection, and my guess is everyone's thinking better safe than sorry at this point. Hard to argue with that logic, believe me. Although considering I started the original lung IVs a week before we even discovered and starting treating the port snafu, I'm definitely feeling ready to be off of IVs sometime soon!
In the meantime, I think I have a little bit of port envy. I'm sure Freud would have a field day with that statement, but it's true -- I have rediscovered that I really, really, REALLY don't like PICC lines. Mostly this is just because I feel like I have to be more careful about my arm when a PICC is in than I ever did with my port (and for good reason: they clot easier and are more prone to infection). The big thing for me is my secret fear that this thing is going to actually rip out of my arm at some point, although that seems unlikely since it's actually stitched on there. (By the way, is that normal? I don't remember having stitches with my old ports -- 9 years ago, remember -- but this one definitely has two stitches connecting it to my arm right where the catheter leaves my body. It's annoying because they hurt under the dressing by pressing into my skin.) So yeah, in the upcoming weeks/months I have to decide if I want to 1) leave this PICC in for several months regardless of whether I'm on IVs the whole time and hope it lasts me to transplant (downside: annoying, plus have to deal with above-mentioned secret fear even while not on IVs, which seems unfair), 2) get this PICC pulled and get a new one if/when I need new IVs (downside: my veins are pretty much shot -- it took IR 3 hours to place this one), or 3) get a port until transplant (downside: I'm still a little gun shy on the port thing, just because of recent experience, plus it might have to come out with the tx surgery anyway, making it pointless?). Any suggestions out there from people who have been through this choice -- or something vaguely similar? All advice is welcome.
My other main focus right now (besides, you know, getting back together with friends and enjoying this great fall weather we've been having) has been on regaining some of my strength that I lost during this whole ordeal. It's fair to say lying around in a hospital bed, while sometimes good for your overall well being, is NOT good for your muscles. Seriously, for the first week I was out of there I would get tired after a 10 minute walk to the store -- and when I say "tired" I mean like 2-hour-nap-style exhaustion. Obviously part of that was just my body's need for continued rest since I wasn't totally healed yet, but a lot of it was just plain weakness, which I happen to think is both understandable and excusable after 4 hospital stays in as many weeks. Understandable, yes. Fun, no. So lately I've been trying to face the problem head-on and have gotten back in touch with my old friend the treadmill, as well as much outside walking as I can handle and my new favorite resistance training/core building exercise: gyrotonics. Love this. There is a great place close to my house where I can get private instruction a couple of times a week, and I'm totally addicted. Right now I'm going easy on the arms (see previous ramblings re: PICC issues, not to mention the surgery I had on the other arm a couple of weeks ago), but my legs and core feel amazing! You do work out with weights as part of this technique, but it's also very much about flexibility and working your muscles together as a complete system. I think of it as yoga meets pilates meets Sven the bodybuilder. Fun stuff.
The main difference in my exercise mentality over the past couple of weeks has been that the focus right now is on getting ME as strong as I can possibly be. I know that sounds really simple, but to be honest, for a while there after I heard the word "transplant" I wasn't really very focused on my personal well-being when I hit the gym. Weird, huh? Let me explain what I mean: I had heard so many stories (inspiring, to be sure) about people raising their lung function and getting off the list through exercise that THAT became my only goal. I was constantly waiting for some sort of "treadmill miracle" to take place that would somehow shoot my numbers up out of transplant range, banish all infection, and let me get back to a place where CF didn't always have to be such a huge obstacle for me each morning. But the fact of the matter is, the only thing I gained out of that whole thing was a sense of failure and a lot of panic attacks. (As an aside here, I'm sure it doesn't help that I'm a total "type A" personality and tend to be VERY hard on myself, and I'm also sometimes a rather unrelenting optimist, which is normally a great thing but here maybe led me to set my sights on something that wasn't entirely realistic for me.) The point is: I wasn't working out for me so much as I was working out for my NUMBERS -- and as anyone who's gone crazy trying to work out just to lose weight will tell you, it's a lot harder to really focus on getting healthy when you're too focused on a print out from some silly machine.
So now here's the deal: I would love to get off the transplant list, but I really feel that my best bet for doing so is to actually get transplanted. Don't get me wrong, I'd love to make these lungs last a few more years, and I do believe in miracles, but I also have faith that transplant will be a blessing and an opportunity sent from God, my donor, and a great team of doctors -- it will not be a failure on my part. Having realized this much is true (and, sheesh, it took me long enough), I'm going into this new stretch of exercise and life with the goal of becoming as strong as I can, whether that strength ultimately helps me to avoid transplant or to come through it that much easier when THE Call actually comes. And if the numbers on the machine never change for me again (or even if they go down), well, I'd rather be a strong and active 30% than a defeated and panicky one who wonders why she can't be a 35%. And right now I'm feeling strangely proud of all my cysters and fibros who push themselves to do what they can, because I'm more sure than ever that this game is about so much more than just the numbers.
As a personal sidebar, I completely LOVE using the word "fibros." Cystic slang at its absolute finest (and most ridiculous).
Stay well everyone.
About Me
- Piper
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
Wednesday, September 30, 2009
Wednesday, September 16, 2009
Third Time's the Charm
Good news: the catheter is OUT!
Yep, afer 2 1/2 months of weird fevers, blood cultures every few days, over 6 CT scans of various parts of my body, countless x-rays, 4 hospital stays, and continuous use of one IV or another (aside from a brief 2 week break in there), the probable culprit is out of my body for good! I cannot even tell you how excited I am.
Of course, in true Piper style, I didn't make it easy on anyone. They were scared to put me under general, so the whole thing was under conscious sedation (apparently I told the nurses all about my sister's awesome fashion line -- how great of a little sister am I?). They cut open my arm in multiple places, clamped off a vein, removed the scar tissue, and then ended up having to literally "lasso" the catheter as it started slipping away into my heart. Wow. They thought the surgery would take about 20 mins to an hour -- it took over 2! But I have an awesome team, they got the job done, they did it safely, and I'm scheduled to finally go home tomorrow. Hopefully minus one very pesky blood infection.
I'll still be on lung IVs for a while, but hopefully not too long. This is week 3 and I normally do 3-4, so here's hoping I get to call it all quits after that. We're going to leave in my PICC for now, in part because it seems silly to get a new port when they'll have to remove it during transplant anyway. The other reason is that it took them 3 hours to place this PICC in interventional radiology (no joke) because my veins simply "do not do PICCs" anymore, as the radiologist said to me afterward. So it might be wise to leave this one in just in case I end up back on IVs in the next month or so. The other option is a new port, and while I'm not opposed, I am a little gun-shy right now. I think it's justified.
By the way, this is totally not to say CFers should avoid ports. Totally not. I LOVED mine. And it was great, for 9 whole years. It saved me countless PICCs (off the top of my head I can say that I've had at least 25 rounds of IVs in that 9 years, which is ridiculous -- most of them in the last 3), and a lot of pain. What happened to me with the stuck catheter was totally weird and very rare, so please don't take it as anti-port propaganda.
Okay, so other news.
1) I am now "officially" on O2 24/7. I say "officially" because I am actually still stating a little above 90 most of the time, but I desat with minimal activity (like walking around the apt), so my doctor placed me on 2 liters with instructions to use my judgment and be careful. It's a new development to have the script for the 24/7 O2, but it doesn't change much, since I was being pretty careful to use it with any real exertion anyway.
2) I have a Frequencer! This is a new airway clearance device that I asked my doc to look into and she, being amazing, got me a demo and then a free trial. I love it! It works like chest CPT only using sound waves that go through your body. You don't feel squeezing or beating, but then when you speak your voice vibrates just like the vest! You hold the little speaker over each part of the lung for 2 mins, just like CPT (front only -- it travels through muscle and gets both sides of the lobe), and it works wonders. I cough up tons every time I use it. Highly recommended to try out, especially for people who want a basically silent, tiny, and super effective alternative to the vest. I promise pics and a more in-depth post later.
3) Just an interesting tidbit: I just found out that my center is one of just a couple in the country currently experimenting with transplanting CFers directly off a type of artificial lung called ECMO -- basically a machine that takes blood out of your body, oxygenates it, and returns it. The idea is that the vent is problematic for CFers because you can't cough. So my center is experimenting with taking CFers who go into respiratory distress and weaning them off the vent and onto ECMO, and then actually taking them out from under sedation so that even while hooked up to ECMO they can cough and do some airway clearance. The idea is that the CFer will then be in better shape going into transplant and hopefully have better outcomes than off the vent transplant (though many of those turn out fine, it has to be said). I don't entirely get it, but it was offered to me as an option should things get that far (knock on wood). ECMO is sometimes used after transplant to help lungs that for some reason aren't functioning well in the first couple of days, but this is apparently a much more novel and experimental use. There has already been at least one success story here using the method. I haven't decided yet if I would go for this option or not, but I'm discussing it with my family now just in case. I just think it's crazy incredible what new things are developing in the world of CF lung transplants!
That's it. Thanks everyone for your thoughts and prayers -- they definitely came in handy to make this try a success!
Yep, afer 2 1/2 months of weird fevers, blood cultures every few days, over 6 CT scans of various parts of my body, countless x-rays, 4 hospital stays, and continuous use of one IV or another (aside from a brief 2 week break in there), the probable culprit is out of my body for good! I cannot even tell you how excited I am.
Of course, in true Piper style, I didn't make it easy on anyone. They were scared to put me under general, so the whole thing was under conscious sedation (apparently I told the nurses all about my sister's awesome fashion line -- how great of a little sister am I?). They cut open my arm in multiple places, clamped off a vein, removed the scar tissue, and then ended up having to literally "lasso" the catheter as it started slipping away into my heart. Wow. They thought the surgery would take about 20 mins to an hour -- it took over 2! But I have an awesome team, they got the job done, they did it safely, and I'm scheduled to finally go home tomorrow. Hopefully minus one very pesky blood infection.
I'll still be on lung IVs for a while, but hopefully not too long. This is week 3 and I normally do 3-4, so here's hoping I get to call it all quits after that. We're going to leave in my PICC for now, in part because it seems silly to get a new port when they'll have to remove it during transplant anyway. The other reason is that it took them 3 hours to place this PICC in interventional radiology (no joke) because my veins simply "do not do PICCs" anymore, as the radiologist said to me afterward. So it might be wise to leave this one in just in case I end up back on IVs in the next month or so. The other option is a new port, and while I'm not opposed, I am a little gun-shy right now. I think it's justified.
By the way, this is totally not to say CFers should avoid ports. Totally not. I LOVED mine. And it was great, for 9 whole years. It saved me countless PICCs (off the top of my head I can say that I've had at least 25 rounds of IVs in that 9 years, which is ridiculous -- most of them in the last 3), and a lot of pain. What happened to me with the stuck catheter was totally weird and very rare, so please don't take it as anti-port propaganda.
Okay, so other news.
1) I am now "officially" on O2 24/7. I say "officially" because I am actually still stating a little above 90 most of the time, but I desat with minimal activity (like walking around the apt), so my doctor placed me on 2 liters with instructions to use my judgment and be careful. It's a new development to have the script for the 24/7 O2, but it doesn't change much, since I was being pretty careful to use it with any real exertion anyway.
2) I have a Frequencer! This is a new airway clearance device that I asked my doc to look into and she, being amazing, got me a demo and then a free trial. I love it! It works like chest CPT only using sound waves that go through your body. You don't feel squeezing or beating, but then when you speak your voice vibrates just like the vest! You hold the little speaker over each part of the lung for 2 mins, just like CPT (front only -- it travels through muscle and gets both sides of the lobe), and it works wonders. I cough up tons every time I use it. Highly recommended to try out, especially for people who want a basically silent, tiny, and super effective alternative to the vest. I promise pics and a more in-depth post later.
3) Just an interesting tidbit: I just found out that my center is one of just a couple in the country currently experimenting with transplanting CFers directly off a type of artificial lung called ECMO -- basically a machine that takes blood out of your body, oxygenates it, and returns it. The idea is that the vent is problematic for CFers because you can't cough. So my center is experimenting with taking CFers who go into respiratory distress and weaning them off the vent and onto ECMO, and then actually taking them out from under sedation so that even while hooked up to ECMO they can cough and do some airway clearance. The idea is that the CFer will then be in better shape going into transplant and hopefully have better outcomes than off the vent transplant (though many of those turn out fine, it has to be said). I don't entirely get it, but it was offered to me as an option should things get that far (knock on wood). ECMO is sometimes used after transplant to help lungs that for some reason aren't functioning well in the first couple of days, but this is apparently a much more novel and experimental use. There has already been at least one success story here using the method. I haven't decided yet if I would go for this option or not, but I'm discussing it with my family now just in case. I just think it's crazy incredible what new things are developing in the world of CF lung transplants!
That's it. Thanks everyone for your thoughts and prayers -- they definitely came in handy to make this try a success!
Tuesday, September 15, 2009
Surgery Fun Tomorrow
Well, I've been home for exactly a week today, and I officially go back into the hospital tomorrow. Not for a tune up though (still on at-home daptomyacin for the blood infection and merrem for the lungs). This time it's for surgery.
Yep, fingers crossed, we're finally going to get rid of the rest of that blasted port.
Basically, I've been running low to mid-grade fevers since I got home, and while we're pretty sure part of that was from the lungs (which had to be off all anti-pseudomonals for a few days due to bad kidney functions after the polymyxin), we still think part of it is from that lingering port/blood issue. But having gone in twice prior and failed to remove the catheter -- once in his office with lidocaine and once in the OR with lido and "twilight" sedation -- because the darn thing is fused to my vein in the armpit/shoulder area, the surgeon is going to take a more aggressive approach this time.
The plan is to go in through my armpit (sidenote: not sure if this means through the actual "pit" itself, or if it really means a bit higher -- better shave just in case!) and clamp off the offending vein on either side of the scar tissue. Then he'll be able to cut in there with a tiny incision, dislodge the catheter, and then hopefully pull it out no problem (the port itself is already gone) and sew up the vein.
Yeah, you read right: sew up the vein. Vascular surgery is amazing.
Anyway, because I'm thin enough for the surgery to be rather close to the surface (thanks, CF!) and because I have crappy lungs (um, thanks again, CF?), we're going to do this whole thing under "twilight" sedation once again. So I won't be asleep, just very, very loopy. And normally that means that I would be able to just go home when it was all over, but my CF doc wants me in the hospital for one night just in case. I'm not making any protests there.
One night to (hopefully) set this whole thing in order and get rid of the mystery fevers of 2 months and counting once and for all sounds pretty damn good to me, thanks very much.
Not particularly excited about the whole process, obviously, but I feel blessed to have such a competent team, and I'm super happy about not having to risk the breathing tube at this point in my CF life. Avoiding the vent is key right now and I've been promised that if my O2 drops below expected levels they'll do a type of blowback O2 (where they literally blow it into your mouth with a machine) and try basically everything else before they do a tube. But I've had conscious sedation plenty of times and never needed more than my nasal cannula, so I'm just going to stay focused on that. It also apparently says all over my surgical instructions "no general!" and "no intubation!" -- or so the nurse told me on the phone.
Hopefully I'll be able to update tomorrow from Columbia and let you all know that things went smoothly and that the little bugger is finally OUT! Everyone seems confidant, and I trust this surgeon a lot, so I'm anticipating a good outcome for sure.
Thoughts, prayers, intentions, and good vibes are always welcome in the meantime, though!
Yep, fingers crossed, we're finally going to get rid of the rest of that blasted port.
Basically, I've been running low to mid-grade fevers since I got home, and while we're pretty sure part of that was from the lungs (which had to be off all anti-pseudomonals for a few days due to bad kidney functions after the polymyxin), we still think part of it is from that lingering port/blood issue. But having gone in twice prior and failed to remove the catheter -- once in his office with lidocaine and once in the OR with lido and "twilight" sedation -- because the darn thing is fused to my vein in the armpit/shoulder area, the surgeon is going to take a more aggressive approach this time.
The plan is to go in through my armpit (sidenote: not sure if this means through the actual "pit" itself, or if it really means a bit higher -- better shave just in case!) and clamp off the offending vein on either side of the scar tissue. Then he'll be able to cut in there with a tiny incision, dislodge the catheter, and then hopefully pull it out no problem (the port itself is already gone) and sew up the vein.
Yeah, you read right: sew up the vein. Vascular surgery is amazing.
Anyway, because I'm thin enough for the surgery to be rather close to the surface (thanks, CF!) and because I have crappy lungs (um, thanks again, CF?), we're going to do this whole thing under "twilight" sedation once again. So I won't be asleep, just very, very loopy. And normally that means that I would be able to just go home when it was all over, but my CF doc wants me in the hospital for one night just in case. I'm not making any protests there.
One night to (hopefully) set this whole thing in order and get rid of the mystery fevers of 2 months and counting once and for all sounds pretty damn good to me, thanks very much.
Not particularly excited about the whole process, obviously, but I feel blessed to have such a competent team, and I'm super happy about not having to risk the breathing tube at this point in my CF life. Avoiding the vent is key right now and I've been promised that if my O2 drops below expected levels they'll do a type of blowback O2 (where they literally blow it into your mouth with a machine) and try basically everything else before they do a tube. But I've had conscious sedation plenty of times and never needed more than my nasal cannula, so I'm just going to stay focused on that. It also apparently says all over my surgical instructions "no general!" and "no intubation!" -- or so the nurse told me on the phone.
Hopefully I'll be able to update tomorrow from Columbia and let you all know that things went smoothly and that the little bugger is finally OUT! Everyone seems confidant, and I trust this surgeon a lot, so I'm anticipating a good outcome for sure.
Thoughts, prayers, intentions, and good vibes are always welcome in the meantime, though!
Friday, September 11, 2009
Like Riding a Bike
Well, I'm home! Back to my apartment, my much-missed windows (currently coated with a not-so-much-missed rain, but what can I say -- even drizzle looks gorgeous against the New York City skyline), my favorite junkie snack foods, my bed, and, of course, my adorable Sampson. Best of all, I've been home for three days already and, while we did have one small scare due to a nasty fevers and nausea combo pack that sent us back up to Columbia Pres for a pow-wow with my amazing team and a possible admission, I dodged that bullet with only some blood draws and a promise to spend a lot of time putting hot compresses on my much-abused arms. So that means we're now facing my first weekend home from the hospital since . . . well, since it was actually summer.
And yes, we're all quite happy with the situation, thanks for asking.
My dad is here now because he's been making a very admirable effort to be out here as many weekends as possible, given that now both his daughters AND his wife more or less reside here full time. It's so awesome to have the whole family around, to be honest. When I'm sick, it just makes me feel safe and cozy to be surrounded by all these people taking care of me. And when I feel better, we get to enjoy the city as a family, walk the dog, or Erin and I go out and live our normal lives and leave my parents to get a little, um, alone time. After all, that does seem only fair when your spouse of over 35 years lives in another city halfway across the country.
So anyway, my dad's out, and he's actually brought with him a little toy: one of his old mountain bikes. Now, first let me explain that growing up in Colorado there were a couple of things my sister and I were doing from about age 2, and the top slots on this list were skiing and bike riding. It's just a Colorado rite of passage, I guess, kinda like turning 16 and immediately learning how to control your car in a white-out blizzard, or going to your first Broncos/Rockies/Nuggets game and learning what it means to unconditionally love something that will continue to break your heart. Repeatedly. It's just something you learn to live with.
So I wasn't really surprised when my dad turned up at the apartment with a lightweight, dirt-encrusted, spike-wheeled mountain bike to be the partner of the heavy-set, stylish city cruiser bike (with a basket for Sammy of course!) that my mother and I had purchased a couple of weeks before. Nope, I had expected that the day would come when my family would transplant at least a little of our Colorado-ness to the urban mountains of New York City, and a mountain bike seemed the perfect way to meet that expectation.
I just didn't expect to (nearly) fall off.
In my defense, I was riding the city cruiser, on a Manhattan sidewalk, WITH the (very nervous) dog in basket. I was definitely multi-tasking, simultaneously playing the roles of the apologetic rude pedestrian misusing the sidewalk, the overly protective dog mama comforting her rather stunned little guy, and enthusiastic Coloradoan anxious to feel the wind in her hair after a good four to five years without any reason or excuse to ride a bike at all. A strange combo, sure, and one that I can assure you nearly killed me, my puppy, and several unsuspecting New Yorkers out for a stroll, who were, perhaps, accustomed to dodging tourists in Times Square but were far less prepared to dodge wobbly bicycles on Canal St.
It was a beautiful, slightly horrifying moment. The good news being that I, my puppy, and my bike all made it home in tact and surprisingly un-traumatized.
All that was, of course, several weeks ago (back when it was actually summer, and pre-hospitalpalooza 2009), but it's been on my mind for the past couple of days, and for one very legitimate reason: for the first time in 9 years, I have a PICC line. And I have to re-learn how to ride it, so to speak.
To be honest, I thought it would be really easy, kinda like the mistake with bike. I remember PICCs as being relatively unobtrusive little buggers, something I chose to do away with more for the convenience of the port than because of any inherent flaw in the original product. And then my port finally went kaput after 9 years (and by "kaput" I mean "got infected and had to have two attempts at surgical removal, both of which were unsuccessful given that the thing has attached itself to my vein in my upper arm and flat-out refuses to leave") and I was left with no option but peripherals and PICCs. Needless to say, after the 14th infiltrated peripheral (leading to two infections), I was more than ready to give the PICC the old college re-try.
And so far it's been great. Really. I mean, forget about the fact that the supposedly 15-30 minute procedure with IR to get the thing in ended up taking three hours because my veins are particularly small and unwilling (they had a lot of these things in the pre-port years), because after that I've had no problems. And for that I count myself REALLY lucky, because apparently in the past 9 years I've become something of a PICC idiot.
Yesterday at clinic I was scolded for not wearing a proper "sleeve" over the PICC, although I had managed to secure it so that it wouldn't be pulled out, far more than I ever would have done with my port tubing. Nope, apparently that's not enough, I was told, and vague memories of some sort of mesh, tube-sock-like material came rushing back to me. Oh yeah. Next I was asked when the dressing was changed post-insertion, and I told my doctor that I was under the impression I had a week (standard dressing change time for a port access). Wrong again. The PICC, I'm told, requires a dressing change within 48 hours of insertion, after which one can resume a weekly schedule. Huh. Well, live and learn.
There's a few other weird features of this PICC, if you ask me. It definitely looks different from the old PICCs I remember as a teenager. It has no clamp, and I'm not sure if that's a new feature or just something I got used to with the port tubing, but it sure feels weird to me. Even the dressing used is different, with a sort of slit in edge of the tegaderm to allow the PICC to pass through. I don't know if any of this is standard, but I know it's all pretty new (or new again) to me.
I guess the next few weeks will tell if having a PICC is truly like riding a bike, but so far I have to admit that I see the similarities. You can grow up with it, hold onto it as long and as hard as you can, but there will probably come a time when you decide to move onto something else for a while, be it out of necessity or just plain choice. And then someday you might find yourself suddenly faced with the prospect of trying again, despite the fact that it's been years, and everyone (your CF doctors or the pedestrians on Canal St) is going to expect you to be able to handle the reunion, for your own sake and for theirs.
And you will handle it all, eventually. Because a few wobbles and even a sudden gasp or two are just fine, so long as everyone gets home safe.
And yes, we're all quite happy with the situation, thanks for asking.
My dad is here now because he's been making a very admirable effort to be out here as many weekends as possible, given that now both his daughters AND his wife more or less reside here full time. It's so awesome to have the whole family around, to be honest. When I'm sick, it just makes me feel safe and cozy to be surrounded by all these people taking care of me. And when I feel better, we get to enjoy the city as a family, walk the dog, or Erin and I go out and live our normal lives and leave my parents to get a little, um, alone time. After all, that does seem only fair when your spouse of over 35 years lives in another city halfway across the country.
So anyway, my dad's out, and he's actually brought with him a little toy: one of his old mountain bikes. Now, first let me explain that growing up in Colorado there were a couple of things my sister and I were doing from about age 2, and the top slots on this list were skiing and bike riding. It's just a Colorado rite of passage, I guess, kinda like turning 16 and immediately learning how to control your car in a white-out blizzard, or going to your first Broncos/Rockies/Nuggets game and learning what it means to unconditionally love something that will continue to break your heart. Repeatedly. It's just something you learn to live with.
So I wasn't really surprised when my dad turned up at the apartment with a lightweight, dirt-encrusted, spike-wheeled mountain bike to be the partner of the heavy-set, stylish city cruiser bike (with a basket for Sammy of course!) that my mother and I had purchased a couple of weeks before. Nope, I had expected that the day would come when my family would transplant at least a little of our Colorado-ness to the urban mountains of New York City, and a mountain bike seemed the perfect way to meet that expectation.
I just didn't expect to (nearly) fall off.
In my defense, I was riding the city cruiser, on a Manhattan sidewalk, WITH the (very nervous) dog in basket. I was definitely multi-tasking, simultaneously playing the roles of the apologetic rude pedestrian misusing the sidewalk, the overly protective dog mama comforting her rather stunned little guy, and enthusiastic Coloradoan anxious to feel the wind in her hair after a good four to five years without any reason or excuse to ride a bike at all. A strange combo, sure, and one that I can assure you nearly killed me, my puppy, and several unsuspecting New Yorkers out for a stroll, who were, perhaps, accustomed to dodging tourists in Times Square but were far less prepared to dodge wobbly bicycles on Canal St.
It was a beautiful, slightly horrifying moment. The good news being that I, my puppy, and my bike all made it home in tact and surprisingly un-traumatized.
All that was, of course, several weeks ago (back when it was actually summer, and pre-hospitalpalooza 2009), but it's been on my mind for the past couple of days, and for one very legitimate reason: for the first time in 9 years, I have a PICC line. And I have to re-learn how to ride it, so to speak.
To be honest, I thought it would be really easy, kinda like the mistake with bike. I remember PICCs as being relatively unobtrusive little buggers, something I chose to do away with more for the convenience of the port than because of any inherent flaw in the original product. And then my port finally went kaput after 9 years (and by "kaput" I mean "got infected and had to have two attempts at surgical removal, both of which were unsuccessful given that the thing has attached itself to my vein in my upper arm and flat-out refuses to leave") and I was left with no option but peripherals and PICCs. Needless to say, after the 14th infiltrated peripheral (leading to two infections), I was more than ready to give the PICC the old college re-try.
And so far it's been great. Really. I mean, forget about the fact that the supposedly 15-30 minute procedure with IR to get the thing in ended up taking three hours because my veins are particularly small and unwilling (they had a lot of these things in the pre-port years), because after that I've had no problems. And for that I count myself REALLY lucky, because apparently in the past 9 years I've become something of a PICC idiot.
Yesterday at clinic I was scolded for not wearing a proper "sleeve" over the PICC, although I had managed to secure it so that it wouldn't be pulled out, far more than I ever would have done with my port tubing. Nope, apparently that's not enough, I was told, and vague memories of some sort of mesh, tube-sock-like material came rushing back to me. Oh yeah. Next I was asked when the dressing was changed post-insertion, and I told my doctor that I was under the impression I had a week (standard dressing change time for a port access). Wrong again. The PICC, I'm told, requires a dressing change within 48 hours of insertion, after which one can resume a weekly schedule. Huh. Well, live and learn.
There's a few other weird features of this PICC, if you ask me. It definitely looks different from the old PICCs I remember as a teenager. It has no clamp, and I'm not sure if that's a new feature or just something I got used to with the port tubing, but it sure feels weird to me. Even the dressing used is different, with a sort of slit in edge of the tegaderm to allow the PICC to pass through. I don't know if any of this is standard, but I know it's all pretty new (or new again) to me.
I guess the next few weeks will tell if having a PICC is truly like riding a bike, but so far I have to admit that I see the similarities. You can grow up with it, hold onto it as long and as hard as you can, but there will probably come a time when you decide to move onto something else for a while, be it out of necessity or just plain choice. And then someday you might find yourself suddenly faced with the prospect of trying again, despite the fact that it's been years, and everyone (your CF doctors or the pedestrians on Canal St) is going to expect you to be able to handle the reunion, for your own sake and for theirs.
And you will handle it all, eventually. Because a few wobbles and even a sudden gasp or two are just fine, so long as everyone gets home safe.
Saturday, September 5, 2009
All About Me
So things are moving right along towards transplant over here in Columbia-land. My score has increased quite a bit lately because of increased O2 needs, lower PFTs, poor weight gain, and a decrease in my 6 minute walk score. They actually think they may have lungs for me here in the next couple of months -- some people were even talking as if I might get transplanted during this hospital stay. Yowza. I'm definitely on board, and I have a huge amount of faith all of the sudden that this is right, things are falling into place to give me a second chance at life for which I will be forever grateful, and that God and the Universe and Columbia Presbyterian will bring me these lungs at the exact right moment for me. I'm definitely ready to breathe and be back to my old, energetic, happy, excited, optimistic, hyper, "normal" (haha) self. I'm just so grateful to even have the chance at that sort of opportunity.
In the meantime though, I'd like to go home. I mean, not to sound snippy or anything, but this whole hospital and failed surgery thing is getting old. Luckily my sats and energy levels are up, and my fever is down, so my doctor is on board with letting me go as soon as they place the PICC line. Unfortunately (there is always an "unfortunately" in the hospital -- have you noticed that?), the PICC and IR teams are out until Tuesday, so that's the earliest I'm gonna get it placed it looks like. Long weekends are so much fun for the outside world, but in the hospital it tends to just mean 3 days of not seeing your doctor and not being able to move forward, which is frustrating. My poor arm has blown through 8 peripheral IVs in three days and is swollen up like a basketball. Hopefully tonight they'll at least be able to get permission to use my left arm, which so far has just been recovering from surgery and resting. I think it's about time it started pulling its weight around here, although it points out that for the past 9 years it's handled all the IV work. What a complainer!
Not much other news. My blood infection is clearing up and I've had a couple of negative cultures. They're still worried that it will come back as soon as they stop the dapomyacin, but if that's the case then I can either: 1) have vascular surgery in my shoulder under "twilight" sedation to remove the rest of the catheter, or 2) go on oral abx to control the blood infection until I get the transplant, at which point the catheter will be removed anyway. I think we're probably looking at option 2, but I'm pretty fine with either at this point. It kind of creeps me out to have that catheter still in me without the port, but whatever. I guess it's not as though I have to see it, right? And it just adds to my awesome "sickgirl" powers, I'm sure.
Speaking of power, I'm really really trying to keep my strength up and regain what I lost. When this blood infection hit, it made me more or less catatonic for a couple of days, and when you're already on prednisone that will wipe out muscle mass pretty quick. I felt like I was dreaming when my doctor suggested that I spend "a little time every day" sitting up in a chair to keep up my strength. Sitting?! I asked if I could walk the hall and she seemed a little concerned but of course said yes, and even offered me a walker! Well, I'm proud to report that after several days of walking laps up and down the ward, today I used my pass and walked OUTSIDE, down the block, around the corner, and down through another building to get to the hospital courtyard. Granted, once there I promptly fell asleep and proceeded to nap sitting up for the next half hour or so, but then I got up and walked back, with a short detour to the vending machines. No, it wasn't the workout of my dreams, but it was something, and I got fresh air, and to be honest it was all I had in me for now. I've also been spending time sitting int he lounge, and I plan to walk some more laps this afternoon. It's not great, but it should hold me until I can get back to my treadmill on Tuesday!
The one great thing about the hospital on weekends is fewer people come into your room and but you for random reasons. I've had my CPT for the day, done most of my IVs, and seen allt eh residents covering for my doctors, so for the first time since I got here I think I can actually shut my door, get out my book, and be as antisocial as I please.
Which is exactly what I plan to do.
In the meantime though, I'd like to go home. I mean, not to sound snippy or anything, but this whole hospital and failed surgery thing is getting old. Luckily my sats and energy levels are up, and my fever is down, so my doctor is on board with letting me go as soon as they place the PICC line. Unfortunately (there is always an "unfortunately" in the hospital -- have you noticed that?), the PICC and IR teams are out until Tuesday, so that's the earliest I'm gonna get it placed it looks like. Long weekends are so much fun for the outside world, but in the hospital it tends to just mean 3 days of not seeing your doctor and not being able to move forward, which is frustrating. My poor arm has blown through 8 peripheral IVs in three days and is swollen up like a basketball. Hopefully tonight they'll at least be able to get permission to use my left arm, which so far has just been recovering from surgery and resting. I think it's about time it started pulling its weight around here, although it points out that for the past 9 years it's handled all the IV work. What a complainer!
Not much other news. My blood infection is clearing up and I've had a couple of negative cultures. They're still worried that it will come back as soon as they stop the dapomyacin, but if that's the case then I can either: 1) have vascular surgery in my shoulder under "twilight" sedation to remove the rest of the catheter, or 2) go on oral abx to control the blood infection until I get the transplant, at which point the catheter will be removed anyway. I think we're probably looking at option 2, but I'm pretty fine with either at this point. It kind of creeps me out to have that catheter still in me without the port, but whatever. I guess it's not as though I have to see it, right? And it just adds to my awesome "sickgirl" powers, I'm sure.
Speaking of power, I'm really really trying to keep my strength up and regain what I lost. When this blood infection hit, it made me more or less catatonic for a couple of days, and when you're already on prednisone that will wipe out muscle mass pretty quick. I felt like I was dreaming when my doctor suggested that I spend "a little time every day" sitting up in a chair to keep up my strength. Sitting?! I asked if I could walk the hall and she seemed a little concerned but of course said yes, and even offered me a walker! Well, I'm proud to report that after several days of walking laps up and down the ward, today I used my pass and walked OUTSIDE, down the block, around the corner, and down through another building to get to the hospital courtyard. Granted, once there I promptly fell asleep and proceeded to nap sitting up for the next half hour or so, but then I got up and walked back, with a short detour to the vending machines. No, it wasn't the workout of my dreams, but it was something, and I got fresh air, and to be honest it was all I had in me for now. I've also been spending time sitting int he lounge, and I plan to walk some more laps this afternoon. It's not great, but it should hold me until I can get back to my treadmill on Tuesday!
The one great thing about the hospital on weekends is fewer people come into your room and but you for random reasons. I've had my CPT for the day, done most of my IVs, and seen allt eh residents covering for my doctors, so for the first time since I got here I think I can actually shut my door, get out my book, and be as antisocial as I please.
Which is exactly what I plan to do.
Thursday, September 3, 2009
To My Darling Sampson
Hey Sammybear, it's your mama writing. I'm pretty sure you haven't learned how to read or use a computer in my absence (although if you have, MAJOR props go to grandma for her puppy-training skills), but I still just couldn't resist the chance to send you a message.
Now before you even say it, I know I'm in the doghouse (yes, pun intended) for my recent extended absence. I know that being gone for 5 days and then coming home for one ridiculous night before leaving AGAIN for another week is hardly good puppy-mom etiquette. And while I know you're enjoying having both your grandma and grandad in town for a while plus extended visits with Aunt Erin, I also realize that it just plain sucks when your best friend and playmate goes totally AWOL. You're such a sweet puppy, Sam (random rocket-science experiments aside), and I'm so sorry that I keep having to leave you.
The problem this time, just so you know, was the port. You know that thing in my arm that means the nurses have to come once a month and you get to root around in their bags for fun things to chew on? Yeah, well while you're off snacking on rubber gloves and stethoscopes, the nurse is busy taking care of my port-a-cath, a permanent IV line running from my arm to my chest which has now become infected. So on Tuesday when they sent me home because my lung infection seemed under control, they had no idea that I was going to crash very suddenly overnight because of a full-on systemic infection from the line. Neither did I, and of course, neither did you. You were just happy, like any good dog would be, to have your rightful human home and back where she belongs.
And speaking of back, Sammy, I really am. As in, back in the EXACT SAME ROOM. I wasn't even gone 24 hours, so they managed to put me right back where I came from, which is nice because it kind of feels a little more homey. Only not really homey because, of course, you're not here. (Note to self: speak to hospital about establishing designated "shorkie visiting hours.") But yeah, anyway, back to why I won't be home sooner . . .
See, once they decided my port was infected yesterday, they sent me to have it taken out. So I went down to the procedure room and got all numbed up with lidocaine and they opened up my arm and started to remove the port. Sounds pretty simple right? Pop out port, pull out catheter, sew up patient. Granted, it's not quite as easy as it sounds, I'm sure, but still, none of us were anticipating any problems.
But then again, it is your mama we're talking about, Sammy, so maybe we should have been better prepared for total ridiculousness.
Step 1 went fine - the port popped out no problem. Step 2, on the other hand, not so much. The surgeon tried to pull out the catheter and I told him I felt a pain in my back, so he stopped. When he stopped, the catheter literally sprang back into my vein, sort of like a vacuum cord when you hit the "automatic retract" button. Weird. Okay then, so he tried again. Same thing. Seriously, the thing was stuck. Solution? Tuck the port back into the arm and proceed directly to step 3 (sew up patient), and then schedule port removal in the actual OR for the following day. And I wasn't too upset about it. After all, if I'd been happily nesting in some place for 9 years, I probably wouldn't want to leave either.
So today I had surgery in the OR to get my port removed, sort of like when you had surgery to get your . . . well, you remember your surgery, Sampson. Anyway, unlike you, I was able to remain awake for my surgery, but I was given some fun sedative drugs that made me nice and talkative to the surgeons. This time the plan was a bit more complex: open up arm even farther, remove port, try again to remove catheter, if that fails, slide larger catheter up around current catheter in attempt to gently dislodge catheter from vein, sew up patient.
Well, they tried Sammybear, but it still didn't happen. Turns out this baby is stuck to my vein with some serious scar tissue way up in my shoulder, and the only way to remove it would be through full on surgery (sorta like what you had) only no one wants to do that to me because of the risks associated with putting a CFer on the vent. So I'm kinda stuck for now with an infected catheter in my system (they did, interestingly, remove the actual port -- just snipped it off and put something on the catheter to keep it from sliding into the vein). The good news is that the infection is strep, not staph or pseudo, so it's very treatable and I'm already responding to the additional antibiotic they've started me on to attack the bug. So the infection as it stands now isn't so much dangerous. The bad news is that they can only use this antibiotic for 4-6 weeks, and after that they'll take more blood cultures. Since the catheter is still in there, though, it's likely that the infection will reoccur, in which case we're either going to have to decide how to treat it (we could alternate antibiotics, maybe) or go ahead with the removal. If I can somehow deal with this until transplant then they should be able to just remove the catheter once they're already inside there. Fun, fun, huh Sam?
Anyway, in the meantime I'm getting meds through a lame-old peripheral IV line in my hand. I've already blown one, and my left arm is out of commission until it heals from surgery in a couple of days, so let's hope they can find enough veins in my right arm! You'd have fun with me, Sammy, I have tubes everywhere! On Tuesday, once they're sure the infection is under control for now, they're going to give me an old-fashioned PICC line so that I can keep doing these IVs without continuing to blow veins left and right. And the good news is, once the PICC is placed then I can FINALLY get home to you! I know you can barely contain your little puppy self with all the excitement!
As for the future of the port (and the fun nurses with their magic bags of chew toys), well, I may or may not get a new one. They don't want to put a new one in if the old one is going to be a continued source of infection because it would just infect the new port (sort of like why they do double-lung transplants in CFers). So if in 6 weeks or so after I'm done with all the IVs the blood cultures come back clear and they think the old catheter is clear of infection, I can get a new line placed pre-tx. Otherwise, no dice. And they also seem to think I'll be transplanted sooner rather than later at this point, so it may not even be a major issue, since all ports would have to come out during transplant anyway.
So that's the story, Sammybear. I miss you madly, but hopefully now that we finally have this a little more figured out I'll be able to come home to you a much happier, healthier, and spunkier Piper.
And I'm sure you're already plotting some creative ways to keep me busy.
Now before you even say it, I know I'm in the doghouse (yes, pun intended) for my recent extended absence. I know that being gone for 5 days and then coming home for one ridiculous night before leaving AGAIN for another week is hardly good puppy-mom etiquette. And while I know you're enjoying having both your grandma and grandad in town for a while plus extended visits with Aunt Erin, I also realize that it just plain sucks when your best friend and playmate goes totally AWOL. You're such a sweet puppy, Sam (random rocket-science experiments aside), and I'm so sorry that I keep having to leave you.
The problem this time, just so you know, was the port. You know that thing in my arm that means the nurses have to come once a month and you get to root around in their bags for fun things to chew on? Yeah, well while you're off snacking on rubber gloves and stethoscopes, the nurse is busy taking care of my port-a-cath, a permanent IV line running from my arm to my chest which has now become infected. So on Tuesday when they sent me home because my lung infection seemed under control, they had no idea that I was going to crash very suddenly overnight because of a full-on systemic infection from the line. Neither did I, and of course, neither did you. You were just happy, like any good dog would be, to have your rightful human home and back where she belongs.
And speaking of back, Sammy, I really am. As in, back in the EXACT SAME ROOM. I wasn't even gone 24 hours, so they managed to put me right back where I came from, which is nice because it kind of feels a little more homey. Only not really homey because, of course, you're not here. (Note to self: speak to hospital about establishing designated "shorkie visiting hours.") But yeah, anyway, back to why I won't be home sooner . . .
See, once they decided my port was infected yesterday, they sent me to have it taken out. So I went down to the procedure room and got all numbed up with lidocaine and they opened up my arm and started to remove the port. Sounds pretty simple right? Pop out port, pull out catheter, sew up patient. Granted, it's not quite as easy as it sounds, I'm sure, but still, none of us were anticipating any problems.
But then again, it is your mama we're talking about, Sammy, so maybe we should have been better prepared for total ridiculousness.
Step 1 went fine - the port popped out no problem. Step 2, on the other hand, not so much. The surgeon tried to pull out the catheter and I told him I felt a pain in my back, so he stopped. When he stopped, the catheter literally sprang back into my vein, sort of like a vacuum cord when you hit the "automatic retract" button. Weird. Okay then, so he tried again. Same thing. Seriously, the thing was stuck. Solution? Tuck the port back into the arm and proceed directly to step 3 (sew up patient), and then schedule port removal in the actual OR for the following day. And I wasn't too upset about it. After all, if I'd been happily nesting in some place for 9 years, I probably wouldn't want to leave either.
So today I had surgery in the OR to get my port removed, sort of like when you had surgery to get your . . . well, you remember your surgery, Sampson. Anyway, unlike you, I was able to remain awake for my surgery, but I was given some fun sedative drugs that made me nice and talkative to the surgeons. This time the plan was a bit more complex: open up arm even farther, remove port, try again to remove catheter, if that fails, slide larger catheter up around current catheter in attempt to gently dislodge catheter from vein, sew up patient.
Well, they tried Sammybear, but it still didn't happen. Turns out this baby is stuck to my vein with some serious scar tissue way up in my shoulder, and the only way to remove it would be through full on surgery (sorta like what you had) only no one wants to do that to me because of the risks associated with putting a CFer on the vent. So I'm kinda stuck for now with an infected catheter in my system (they did, interestingly, remove the actual port -- just snipped it off and put something on the catheter to keep it from sliding into the vein). The good news is that the infection is strep, not staph or pseudo, so it's very treatable and I'm already responding to the additional antibiotic they've started me on to attack the bug. So the infection as it stands now isn't so much dangerous. The bad news is that they can only use this antibiotic for 4-6 weeks, and after that they'll take more blood cultures. Since the catheter is still in there, though, it's likely that the infection will reoccur, in which case we're either going to have to decide how to treat it (we could alternate antibiotics, maybe) or go ahead with the removal. If I can somehow deal with this until transplant then they should be able to just remove the catheter once they're already inside there. Fun, fun, huh Sam?
Anyway, in the meantime I'm getting meds through a lame-old peripheral IV line in my hand. I've already blown one, and my left arm is out of commission until it heals from surgery in a couple of days, so let's hope they can find enough veins in my right arm! You'd have fun with me, Sammy, I have tubes everywhere! On Tuesday, once they're sure the infection is under control for now, they're going to give me an old-fashioned PICC line so that I can keep doing these IVs without continuing to blow veins left and right. And the good news is, once the PICC is placed then I can FINALLY get home to you! I know you can barely contain your little puppy self with all the excitement!
As for the future of the port (and the fun nurses with their magic bags of chew toys), well, I may or may not get a new one. They don't want to put a new one in if the old one is going to be a continued source of infection because it would just infect the new port (sort of like why they do double-lung transplants in CFers). So if in 6 weeks or so after I'm done with all the IVs the blood cultures come back clear and they think the old catheter is clear of infection, I can get a new line placed pre-tx. Otherwise, no dice. And they also seem to think I'll be transplanted sooner rather than later at this point, so it may not even be a major issue, since all ports would have to come out during transplant anyway.
So that's the story, Sammybear. I miss you madly, but hopefully now that we finally have this a little more figured out I'll be able to come home to you a much happier, healthier, and spunkier Piper.
And I'm sure you're already plotting some creative ways to keep me busy.
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