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.

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!

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!!

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!

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!

Ported up and in the hospital

So I’m not exactly having my best week ever…

On Wednesday I had the port put in, which ended up taking longer and being more painful than I expected. If you’re medically squeamish, you may need to skip the rest of this paragraph. To put in the port, they made an incision at the base of my neck and put a catheter into one of my jugular veins (insert Timon from The Lion King shouting “Go for the jugular, the jugular!” here). They made another incision just below my collarbone, and inserted an access point under my skin that IVs can go into. So I now have a weird hard lump under my skin about the size of a marble, which I’m sure is totally attractive and not at all freakish. They tunneled the end of the catheter under my skin and connected it to the access point. And then they sewed me up and sent me on my way.

We didn't do general anesthesia, because my lungs typically have difficulty recovering from that. Instead it was sedation and local anesthesia. It was kinda interesting, because initially I was mostly awake and thinking somewhat clearly, I just couldn’t be bothered by anything. It took some time for the doctor to come in and start the procedure, so I started “testing” the sedative by thinking about upsetting things and seeing whether they bothered me. I then wondered if I could desensitize myself by thinking about upsetting things while I was all calm under sedation, and train myself to not be upset by them. Apparently even under sedation I’m both a dork AND a social worker. I can’t decide if that’s pathetic or impressive.

Unfortunately, for some reason they decided that the appropriate pain medication for being sliced up and horribly bruised is… Tylenol. Which was NOT cutting it. Little hard to sleep when you hurt every time you move.

They didn't have a room for me at the hospital on Wednesday, so I ended up going home. I think that actually may have been for the best, because I was able to spend my first night of post-op misery in the comfort of my own bed. I was admitted on Thursday and got started with IV antibiotics and fluids, and nebulizers/chest PT 4-5 times a day. Unfortunately, I started running a low-grade fever shortly after being admitted, and it hasn't gone away. For some reason my oxygen level has also dropped, and I now get winded from even the slightest exertion. I’ve also been dealing with some GI issues, so I’ve been very nauseous and barely able to eat. And I’m coughing up lots of thick, dark mucus, which is important to get out, but the getting it out part is not so fun. Coughing + healing incisions + nausea is not a pleasant combination. Thankfully, the pain started to ease off on Sunday, so that’s one less thing to deal with.

Right now I’m still in the hospital, still feverish and congested and nauseous and a little sore. I had hoped I could get home for Chanukah, but that’s looking unlikely. I might make it home for PART of Chanukah, but definitely not the first few days.

So that’s my story. I’ve been tired and cranky and haven't even bothered making Pole People yet. Hopefully things will settle and I’ll pull myself together to make some soon. I have a reputation to maintain!

Port placement, hospitalization, and Medicare planning

I felt slightly better over the last few weeks, but didn’t see a huge improvement, and my numbers stayed about the same. My doctor isn’t in a hurry to do a round of IV antibiotics, but since I’m heading in that direction and my insurance will be changing in January, we decided to get it out of the way sooner rather than later. We discussed the port situation, and she thinks that the risk of bleeding in my lungs while on blood thinners is more dangerous than the risk of a clot, particularly since I’ve continued to have episodes of bleeding during the last few weeks. The whole thing is really a guessing game, since there’s no way to figure out how likely one outcome is over another. So we’re just going to go for the port without blood thinners, and of course monitor for clot symptoms.

I’m scheduled to have the port placed on Wednesday afternoon. It’s an outpatient procedure, and I don’t want to deal with another PICC line beforehand, so I won’t be admitted until afterwards. Hopefully they’ll have a bed for me that afternoon or evening so I can go straight upstairs after the procedure. Some people try to score reservations at fancy restaurants or hotels… I get excited about a room at HUP. At least my room is probably cleaner!

I’m a little anxious, partially because this is an unfamiliar procedure and I don’t know how it will go, partially because it’s unclear how much benefit I will end up getting. Since I haven’t been getting much benefit from IV antibiotics, the biggest advantage of the port may be that we can easily access it and do a round of at-home IV hydration to help loosen things up and clear out my chest whenever we want. Hopefully that will help me feel better between hospitalizations without having to go through all the drama of getting a PICC or being admitted.

In other news, Medicare in New Jersey sucks if you’re under age 50. If I get original Medicare, I’ll also need a Medigap plan to pay for the 20% that Medicare doesn’t cover. There are many different types of Medigap plans, however in New Jersey if you’re under 65 you can only get Medigap Plan C. Additionally, after hours of frustrating internet research and phone calls, I’ve learned that if you’re under age 50 there’s only ONE company that offers Medigap coverage in New Jersey. Between the Medigap premium, prescription premium (Medicare Plan D), and outpatient medical premium (Medicare Plan B ), I’ll be paying about $400 a month for health insurance. The other option is a Medicare Advantage plan, which is basically a Medicare HMO that bundles those plans under one provider. They have lower premiums, but high deductibles and copays – and with all my hospitalizations, specialist appointments, tests, and procedures, I’d end up spending even more over the course of the year. Additionally, since it’s an HMO, I might have trouble finding a plan that will allow me to cross state lines for treatment in Philadelphia. It’s been SUPER FUN figuring all this out over the last few weeks. I feel like I should be offering classes or something now that I have all this newfound information.

Oh, and none of this even accounts for prescription costs, because EVERY Medicare plan has exorbitant prescription copays when it comes to specialized CF medications. We’re talking several thousand dollars per year for my daily treatment routine. The only reason I’m not completely panicking is that there are patient assistance programs that should cover most of my prescription copays. If they don’t… well, I haven’t needed to start a GoFundMe yet, but I’m keeping it in mind in case things get desperate. Here’s hoping it doesn’t come to that.

Staying on my Healthcare Marketplace (aka Obamacare) plan isn’t an option, by the way. Even if the ACA wasn’t in the process of being dismantled, once you qualify for Medicare you no longer qualify for ACA subsidies, so my premiums would end up being just as expensive as Medicare.

So basically it’s been thrill a minute around here. I sure know how to party!