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!

Spirit animal

Is this my spirit animal? I saw this video on Facebook with the following (translated) caption:

"Even if you are at your worst with a single feather in your butt, naked and with nothing to do... Just be happy and enjoy life, because it passes too fast... "  Hopefully I still have more than a single feather in my butt though! 

Hanging in there

The good news is, I’m not in the hospital. The bad news is, the only reason I’m not in the hospital is that we’re not convinced it’ll do much good. The last few times I’ve been on IV antibiotics, I couldn’t maintain the improvement and tanked again a few weeks later. A few weeks of improvement isn’t really worth all the effort of being hospitalized and going through 3 weeks of IV antibiotics. On the other hand, my numbers have continued to slide and I’m feeling pretty awful now, so maybe it is time for a “tune up.” For now we started me on an oral antibiotic and a nebulized steroid, and I’ll go back for a follow up in 3 weeks.

Daily life is pretty difficult right now, since I’m very tired and get out of breath with just about any exertion. The funny thing is, I keep hearing from people that I LOOK great, so I guess at least I have that going for me. It’s actually a good lesson in not judging based on appearances, since we can’t necessarily tell what’s really going on beneath the surface.

I started doing some exercise at pulmonary rehab, and learned that I’m embarrassingly weak. I did about 10 minutes on the lowest setting on a seated elliptical, which was ok, but then I did 4 minutes on an arm pedal exerciser and discovered that my arms get tired very easily. I also had a PT assessment and she identified some weaknesses in my legs. Next week I will start doing exercises with the respiratory therapist AND the physical therapist at every session, so that should be exhausting. But hopefully it will be helpful!

En garde!

So this happened last weekend. I'm in the blue dress. I about died afterwards from the exertion, but it was 100% worth it! The referee was not thrilled that we kept going into fencing mode despite the strict "no stabbing" rule. You can take the girl out of fencing class, but you can't take fencing class out of the girl!

Rehab and prednisone and port consults, oh my

They tried to make me go to rehab, but I said… ugh, FINE.

(For my friends who are too frum for that reference, it’s from an Amy Winehouse song. Actual lyrics: “They tried to make me go to rehab, but I said no, no, no.” Fortunately I’m a bit more proactive about my health than Amy Winehouse, who died from alcohol poisoning in 2011.)

I had my first pulmonary rehab appointment yesterday. Sessions are about 2 hours each, 2-3 times per week. I’ll be doing a carefully crafted routine of aerobic and strength training exercises to improve my endurance and lung functioning, under the guidance and supervision of respiratory and physical therapists. I’m not particularly looking forward to this, but it would be nice to be able to manage everyday tasks a little more easily. Here’s hoping!

Overall things have been less than stellar since my last update. I went back on Prednisone, but this time it didn’t seem to have much of an impact, which was disappointing. The last couple weeks have been particularly difficult, as I’ve been very fatigued and short of breath. IV antibiotics have been mentioned as a possibility. On Monday I have pulmonary function testing and see my CF doctor, so we’ll see how that goes.

I’ve also been having lots of appointments lately, which is tedious. We’re still trying to figure out what to do about putting in a port. Due to my clot history, hematology recommended that I take a low dose of blood thinners as long as a port is in place. I’m pretty sure my CF doctors aren’t entirely thrilled with that plan, and truthfully neither am I. This is complicated by the fact that I have random episodes a few to several times a year where I cough up blood or blood-stained mucus. That has been happening since I was a kid, and episodes are usually slight and/or brief. Occasionally, however, they get a little more dramatic, and I had one of those a few weeks ago. I’ve also had multiple mild to moderate episodes just in the last few weeks, which is unusual for me. So there’s a little extra anxiety about going on blood thinners right now, since I’m already having bleeding issues. Good times.

Despite all this, I enjoyed the Jewish holidays, and managed not to pick up any respiratory infections while being around loads of people for multiple festive meals. I even danced a little on Simchas Torah. I’ve also continued getting out and about for occasional, random events, such as a Harry Potter trivia night (we ALMOST won!) and the Pennsylvania Renaissance Faire (thanks to kind friends who didn’t mind shlepping me around in a wheelchair). Hopefully pulmonary rehab will improve my energy and stamina so I can have more of these kinds of adventures!

More bureaucracy

This week I learned that Medicare is stupid.

Well, I actually learned that Medicare will not cover in-home IV antibiotics, and instead requires patients to be hospitalized for the duration of treatment. But I think “Medicare is stupid” sums that up fairly accurately. Welcome to bureaucracy: making patients miserable AND wasting exorbitant amounts of money all at the same time!

I will be spending the next 3 months researching Medicare plans and deciding which ones to sign up for by the time I’m eligible in January. Also, I am SO OVER doing massive health insurance research every. Freaking. Year. Especially since there’s a strong possibility that I will end up paying even more money for the privilege of staying alive once I switch over to Medicare. I really need a better hobby.

(I mean the insurance gymnastics, not the staying alive. Staying alive is a good hobby. I plan to do a lot more of that.)

As I mentioned in a previous update, I felt pretty good while hopped up on Prednisone. Sadly, the good times faded pretty fast once I tapered off it. I now have a lovely dry, hacking cough. My endurance is also slipping, and my pulmonary function numbers reflected that. The discussion now is whether to continue pursuing aggressive treatment with limited return, or to see what happens if we back off on the aggressive treatment. There are pretty much 2 possibilities with the latter option: 1) Nothing happens, I continue muddling through at my current functioning level, and we see if I can live with that; or 2) I start slipping even further, which would show that the aggressive treatment is helping to prevent things from getting even worse. I asked my doctor if we could delay this little experiment until after the Jewish holidays, and hop me up on Prednisone in the meantime so I can manage all the traveling and socializing and such. He agreed, so it’s back to the Prednisone life for me! Yay!

The current goal is to somehow make it through being around hoards of people over the course of various holidays without picking up any respiratory infections. Wish me luck!