Saturday, January 6, 2018
Pole dancer
Katherine: *watching me maneuver around my IV pole trying to get stuff done without getting tangled in tubing* You give a whole new meaning to "pole dancing!"
Thursday, January 4, 2018
Prognosis and long-term planning
I had my follow up appointment last Thursday, and though the results were completely unsurprising, they were still pretty disheartening. Based on at-home readings on my hand-held peak flow meter, I was pretty sure my FEV1 (the primary lung function number we look at, which measures airway obstruction) hadn’t budged. And I was right. However, that is possibly/probably due to the fact that my lungs are still recovering from the respiratory virus. We decided to do at least another week of IV antibiotics and fluids while the viral symptoms continue easing, and added in some Prednisone to help open up my airways. If I still feel like I’m improving after that, I’ll keep going with yet another week of treatment to try to get me up to my best possible lung functioning. We don’t expect to see a HUGE difference, because in the last couple years I just haven’t been having a strong response to IV antibiotics. But I do typically have SOME response, and we’re pretty sure I can do better than I am right now.
The fact that I haven’t been responding to IV antibiotics, however, is an ongoing concern. My lung function has been declining pretty steadily and somewhat rapidly over the last few years, and we haven’t really been able to do much to stop it. It’s also been difficult to keep me feeling halfway decent between rounds of IV antibiotics. Honestly, I can probably count the number of weeks that I felt mostly functional in 2017, and 2018 isn’t shaping up to be much better.
I finally initiated a conversation about prognosis with my doctor. I already knew almost everything he had to say, but we hadn’t actually directly discussed it before now. Yes, my lung function is declining somewhat rapidly. No, there isn’t really much more they can do to slow it down. Yes, they are concerned. No, they don’t really know what else to do to help me feel better, aside from long-term steroid use, which may or may not help and could have some significant side effects. Yes, we may do that anyway, if that’s what I want.
We also discussed lung transplant planning. Many people seem to think that a lung transplant is the obvious solution, but lung transplants come with a host of potential complications and risk factors, and have varying degrees of success – if you’re even lucky enough to get lungs in the first place. Lung transplants are a last ditch effort when you’re out of options and running out of time – and I’m not there yet. Right now my FEV1 hangs out in the 50-60% range, and you don’t get listed for transplant until you’re under 30%. Recently I’ve been losing somewhere around 10% every 2-3 years, so I have some time until then. My doctor did say, however, that due to how rapidly I’ve been declining, they will likely start working on pre-listing procedures just before I hit 30% so that I’ll be ready to go as soon as I drop low enough.
Yes, this is scary. Honestly, I already figured most of this out (aside from the lung transplant details) around September, and have been mildly depressed since then. I had stopped seeing a therapist in 2016 because I was feeling good and no longer needed the support, but I am in the process of getting back into therapy. I need to process this next stage of illness, grieve what I’ve lost, accept where I’m at, and re-learn how to find the joy and meaning that I know still exists in my life. I went through this process when I first became disabled, and am fully confident that I will get back to happy-go-lucky, I-got-this, laughing-in-the-face-of-danger Eliana relatively quickly. And I’m sure I’ll need to go through this process again, and again, as I hit each new stage of illness and disability. And each time I will rock it and come back as strong as ever, mentally if not physically.
It's been a rough year. Despite the upbeat persona I try to portray, I am only human, and sometimes it gets to me. But it’s gonna be ok. I’m gonna be ok. And even when CF knocks me down, I still come up fighting. I got this.
The fact that I haven’t been responding to IV antibiotics, however, is an ongoing concern. My lung function has been declining pretty steadily and somewhat rapidly over the last few years, and we haven’t really been able to do much to stop it. It’s also been difficult to keep me feeling halfway decent between rounds of IV antibiotics. Honestly, I can probably count the number of weeks that I felt mostly functional in 2017, and 2018 isn’t shaping up to be much better.
I finally initiated a conversation about prognosis with my doctor. I already knew almost everything he had to say, but we hadn’t actually directly discussed it before now. Yes, my lung function is declining somewhat rapidly. No, there isn’t really much more they can do to slow it down. Yes, they are concerned. No, they don’t really know what else to do to help me feel better, aside from long-term steroid use, which may or may not help and could have some significant side effects. Yes, we may do that anyway, if that’s what I want.
We also discussed lung transplant planning. Many people seem to think that a lung transplant is the obvious solution, but lung transplants come with a host of potential complications and risk factors, and have varying degrees of success – if you’re even lucky enough to get lungs in the first place. Lung transplants are a last ditch effort when you’re out of options and running out of time – and I’m not there yet. Right now my FEV1 hangs out in the 50-60% range, and you don’t get listed for transplant until you’re under 30%. Recently I’ve been losing somewhere around 10% every 2-3 years, so I have some time until then. My doctor did say, however, that due to how rapidly I’ve been declining, they will likely start working on pre-listing procedures just before I hit 30% so that I’ll be ready to go as soon as I drop low enough.
Yes, this is scary. Honestly, I already figured most of this out (aside from the lung transplant details) around September, and have been mildly depressed since then. I had stopped seeing a therapist in 2016 because I was feeling good and no longer needed the support, but I am in the process of getting back into therapy. I need to process this next stage of illness, grieve what I’ve lost, accept where I’m at, and re-learn how to find the joy and meaning that I know still exists in my life. I went through this process when I first became disabled, and am fully confident that I will get back to happy-go-lucky, I-got-this, laughing-in-the-face-of-danger Eliana relatively quickly. And I’m sure I’ll need to go through this process again, and again, as I hit each new stage of illness and disability. And each time I will rock it and come back as strong as ever, mentally if not physically.
It's been a rough year. Despite the upbeat persona I try to portray, I am only human, and sometimes it gets to me. But it’s gonna be ok. I’m gonna be ok. And even when CF knocks me down, I still come up fighting. I got this.
Wednesday, December 27, 2017
It's the little things
You know your life is weird when you get SUPER EXCITED about getting pre-cut, self-adhesive shower barriers to cover your IV instead of having to chop up plastic bags and tape them on.
Thursday, December 21, 2017
Going home!
I’m going home!
Even though I’m still having some lingering viral symptoms, I convinced the doctors that I’m better off recovering in the comfort of my own home. They can’t do anything for a virus anyway, so getting a good night’s sleep in my own bed is probably the best medicine. I’ll still be on IV antibiotics and fluids for at least another week, but I knew from the start that I’d be finishing treatment at home. I just didn’t expect to still be here over 2 weeks later!
Now that the port is healing up and has stopped hurting, I’m really appreciating it. My skin is a bit sensitive to tape, and I often had issues with the PICC line dressings. Part of the problem was that the tape was near the crook of my elbow, which meant it was constantly tugging and pulling as I moved my arm, sometimes causing welts. The port is so much more comfortable. I’m still a little itchy from the tape, but it’s way better than the discomfort around the PICC lines. I’ll also get to grab an IV free shower today, because they’re de-accessing (aka removing the IV needle from) the port before I leave, and the homecare nurse won’t be coming out to re-access it until about 7pm. So I’ll get a few hours of freedom that wouldn’t be possible if I had a PICC line.
I’m usually an incoherent mess after getting home from the hospital, as weeks of exhaustion come crashing in on me all at once. But hopefully I’ll be feeling much better after a few nights of uninterrupted sleep!
Even though I’m still having some lingering viral symptoms, I convinced the doctors that I’m better off recovering in the comfort of my own home. They can’t do anything for a virus anyway, so getting a good night’s sleep in my own bed is probably the best medicine. I’ll still be on IV antibiotics and fluids for at least another week, but I knew from the start that I’d be finishing treatment at home. I just didn’t expect to still be here over 2 weeks later!
Now that the port is healing up and has stopped hurting, I’m really appreciating it. My skin is a bit sensitive to tape, and I often had issues with the PICC line dressings. Part of the problem was that the tape was near the crook of my elbow, which meant it was constantly tugging and pulling as I moved my arm, sometimes causing welts. The port is so much more comfortable. I’m still a little itchy from the tape, but it’s way better than the discomfort around the PICC lines. I’ll also get to grab an IV free shower today, because they’re de-accessing (aka removing the IV needle from) the port before I leave, and the homecare nurse won’t be coming out to re-access it until about 7pm. So I’ll get a few hours of freedom that wouldn’t be possible if I had a PICC line.
I’m usually an incoherent mess after getting home from the hospital, as weeks of exhaustion come crashing in on me all at once. But hopefully I’ll be feeling much better after a few nights of uninterrupted sleep!
Monday, December 18, 2017
Just kidding...
Things were going so well…
I was fever free Wednesday and Thursday, but it came back on Friday. Friday through Sunday I had on and off low-grade fevers, along with increased dry cough and throat/upper respiratory irritation. Due to this they did another viral swab, which finally came back today, and it turns out I’ve picked up a viral respiratory infection. It’s possible I caught it right before coming in and it just hadn’t incubated long enough to show up on the initial viral swab, but it’s more likely I picked it up in the hospital. Hospitals are notorious for spreading infections despite all their attempts to prevent it. I’ve been lucky until now, so I guess I was overdue for this.
The good news is, I’m already on IV antibiotics, so the infection can’t really trigger a CF exacerbation like it usually would. The bad news is, just like any cold, there isn’t really anything to do besides treat the symptoms and wait for it to pass. I’ll be contagious until I have 24 hours fever free. I was making good progress today, but tonight the fever returned, so the clock has reset. My throat has been killing me and my voice is completely shot, and the whole thing is wearing me out.
I also coughed up blood as soon as I woke up this morning, and my mucus was bloody through the afternoon, so that didn’t exactly help. On the plus side, I’m doing much better with eating, and actually managed a solid meal today. I’m also very grateful to Mirel Adler for finding and bringing me chicken soup, which has been good for easing my stomach back into real food as well as soothing my throat.
Despite all this, we’re still working towards sending me home on IV antibiotics sometime midweek. Fingers crossed!!
I was fever free Wednesday and Thursday, but it came back on Friday. Friday through Sunday I had on and off low-grade fevers, along with increased dry cough and throat/upper respiratory irritation. Due to this they did another viral swab, which finally came back today, and it turns out I’ve picked up a viral respiratory infection. It’s possible I caught it right before coming in and it just hadn’t incubated long enough to show up on the initial viral swab, but it’s more likely I picked it up in the hospital. Hospitals are notorious for spreading infections despite all their attempts to prevent it. I’ve been lucky until now, so I guess I was overdue for this.
The good news is, I’m already on IV antibiotics, so the infection can’t really trigger a CF exacerbation like it usually would. The bad news is, just like any cold, there isn’t really anything to do besides treat the symptoms and wait for it to pass. I’ll be contagious until I have 24 hours fever free. I was making good progress today, but tonight the fever returned, so the clock has reset. My throat has been killing me and my voice is completely shot, and the whole thing is wearing me out.
I also coughed up blood as soon as I woke up this morning, and my mucus was bloody through the afternoon, so that didn’t exactly help. On the plus side, I’m doing much better with eating, and actually managed a solid meal today. I’m also very grateful to Mirel Adler for finding and bringing me chicken soup, which has been good for easing my stomach back into real food as well as soothing my throat.
Despite all this, we’re still working towards sending me home on IV antibiotics sometime midweek. Fingers crossed!!
Thursday, December 14, 2017
Most festive room on the floor
Speaking of supportive friends, some of them visited the first night of Chanukah and decorated my room. They also brought an electric menorah and latkes and cookies. I’ve gotten so many compliments on how festive my room is – and people no longer express hope that I’ll be home in time for Christmas, lol! Thanks so much Sarah and Aliza Bienenfeld, Adi Shmuel, and Rivka Jungreis for putting some freilichen in my Chanukah!
I also made some pole people. Only 2 so far, but more to come!
I also made some pole people. Only 2 so far, but more to come!
Progress, and more Medicare madness
Things are finally heading in the right direction. Tuesday night was the first time in days that I didn’t have a fever, and I haven’t had a fever since. I also noticed that I was breathing a little better. The GI issues continue to be a work in progress, but are much better, and hopefully things will be back to normal soon. Between nausea and pain from the port, initially I was having difficulty laying down for chest PT. Things have been better over the last couple days though, so hopefully I’ll be able to work harder on clearing out my lungs. Right now it looks like I’ll be here through the weekend, but I should be sprung sometime next week.
Unfortunately, on Tuesday I found out about yet another Medicare complication, which upended plans that I thought were finally settled. I had decided to get original Medicare along with a prescription and medigap plan. Totally by chance, during a discussion with a case manager about homecare companies and insurance coverage, I discovered that original Medicare will only cover feeding tube supplies if that is the person’s primary source of nutrition. My overnight tube feeds are not my only or even necessarily my primary source of nutrition, but they are an extremely important supplement that has allowed me to maintain a healthy weight. They also help me stay hydrated, which is hugely important. And they are NOT cheap.
I asked her to check whether the Medicare Advantage plans cover it, and yesterday she informed me that they do. So just when I had settled on plans and finished all my applications, I need to chuck it all and start all over again. I compared plan information yesterday, and today I have to call the companies to make 100% sure that they cover feeding tube supplies as well as home infusion. I also need to make sure that my providers in Philly are in network. And then I need to determine whether I can cancel the other plans that I JUST signed up for last week. I’m sure it will all be SUPER FUN and exactly what I want to do while recovering from a CF exacerbation.
Of course, all this coverage comes at a price… Literally. I will be paying a ton in copays for every appointment, procedure, and supply. I just won’t know how much I’ll be spending until I actually spend it, since it’s all dependent on how much treatment I end up needing over the course of the year. With the plans I had decided on before, I paid a set amount in premiums and only had copays for prescriptions, so I knew exactly how much it cost. With Medicare Advantage, I can guess how much I’ll be spending, but all I know for sure is the upper limit, because the medical out of pocket max is $6,700 a year. I hope I don’t end up going that high, but it’s a definite possibility. Also, that does NOT include prescription copays, which have no out of pocket max.
The whole Medicare thing has been extremely frustrating and upsetting, and I’ve cried more than once trying to figure out how to get my needs met without going broke. But I’m also confident that, one way or another, I will get what I need. That is mostly because I know I have a huge supportive network of friends and family who will help me out if we get into GoFundMe territory, as well as an amazing and generous Jewish community. I am so extremely grateful to know that I have such a strong safety net, especially since I know many people in this situation don’t have those resources. I would be a lot more panicked if it weren’t for that. Thank you for being awesome!
Unfortunately, on Tuesday I found out about yet another Medicare complication, which upended plans that I thought were finally settled. I had decided to get original Medicare along with a prescription and medigap plan. Totally by chance, during a discussion with a case manager about homecare companies and insurance coverage, I discovered that original Medicare will only cover feeding tube supplies if that is the person’s primary source of nutrition. My overnight tube feeds are not my only or even necessarily my primary source of nutrition, but they are an extremely important supplement that has allowed me to maintain a healthy weight. They also help me stay hydrated, which is hugely important. And they are NOT cheap.
I asked her to check whether the Medicare Advantage plans cover it, and yesterday she informed me that they do. So just when I had settled on plans and finished all my applications, I need to chuck it all and start all over again. I compared plan information yesterday, and today I have to call the companies to make 100% sure that they cover feeding tube supplies as well as home infusion. I also need to make sure that my providers in Philly are in network. And then I need to determine whether I can cancel the other plans that I JUST signed up for last week. I’m sure it will all be SUPER FUN and exactly what I want to do while recovering from a CF exacerbation.
Of course, all this coverage comes at a price… Literally. I will be paying a ton in copays for every appointment, procedure, and supply. I just won’t know how much I’ll be spending until I actually spend it, since it’s all dependent on how much treatment I end up needing over the course of the year. With the plans I had decided on before, I paid a set amount in premiums and only had copays for prescriptions, so I knew exactly how much it cost. With Medicare Advantage, I can guess how much I’ll be spending, but all I know for sure is the upper limit, because the medical out of pocket max is $6,700 a year. I hope I don’t end up going that high, but it’s a definite possibility. Also, that does NOT include prescription copays, which have no out of pocket max.
The whole Medicare thing has been extremely frustrating and upsetting, and I’ve cried more than once trying to figure out how to get my needs met without going broke. But I’m also confident that, one way or another, I will get what I need. That is mostly because I know I have a huge supportive network of friends and family who will help me out if we get into GoFundMe territory, as well as an amazing and generous Jewish community. I am so extremely grateful to know that I have such a strong safety net, especially since I know many people in this situation don’t have those resources. I would be a lot more panicked if it weren’t for that. Thank you for being awesome!
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