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!

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!

Eclipse

At least 28 hours on the road. Over 1,300 miles traveled. Nearly 7 hours outside in the scorching summer sun.

2 and a half minutes of totality.

ABSOLUTELY WORTH IT.

There is simply no comparison between seeing a partial eclipse and seeing totality. My reaction to watching the progression of the eclipse was, “This is so cool!” My reaction to totality was, “OH. MY. G-D.” Pictures and video can’t even begin to capture the experience. For one thing, capturing picture or video in low light conditions is extremely tricky, so most don’t accurately convey the colors and lighting involved. But even the most accurate image in the world can’t convey what it’s like to look up and see a black sun hanging in the midafternoon sky.

My mom and I arrived at our chosen viewing location, a large state park with sprawling open fields in Vonore, Tennessee, around 9am. We walked around to see the area before settling under a tree and trying to stay as cool as possible in the sweltering heat. There was an increasingly festive atmosphere as more and more people arrived, along with food trucks and even a live band. Strangers chatted with their new neighbors, comparing travel times and sharing viewing tips. A brother and sister sitting near us had a magnificent telescope, which they happily shared with anyone who was interested. Everyone was excited to share this unique life experience together.

Thanks to the last-minute purchase of a tripod, a telephoto lens for smartphones, and eclipse glasses, I was able to get some great pictures of the eclipse progression. As more and more of the sun was covered, every beam of sunlight turned into a mini-projection of the eclipse, creating dozens of eclipse crescents on the ground where the light shined through the leaves of the trees. As we got closer to totality, the quality of the sunlight changed from white midafternoon brightness to the darker yellow you see before sunset. The temperature began dropping, and the light continued fading, until the last sliver of the sun was finally gone.

Shortly after 2:30pm on what had been a sunny, sweltering August afternoon, the world abruptly sank into twilight, that in-between sort of darkness you see after the sun has gone down but before full night blackness has arrived. And in that twilight sky, the sun was a black hole cut out of the heavens, with a beautiful ring of white light blazing around it. It was an overwhelming and awe-inspiring sight that cannot truly be described.

Unfortunately, my camera setup failed during totality, and I was far more focused on actually experiencing the event than on trying to adjust my camera settings. I also tried to record my surroundings before and during totality, but my camera hiccupped and the video didn’t save properly. However, I was able to record the last sliver of the sun disappearing, which then includes some fantastic audio of everyone’s reactions the moment totality arrived.

It’s easy to take the sun for granted in its endless consistency. It always travels a set course, it always radiates heat, and its appearance always stays within very set parameters. Except during a total eclipse, when everything about the sun is completely backwards. Knowing the scientific reasons behind the eclipse doesn’t change the experience, which feels as though the fundamental laws of nature are being upended. And upending the laws of nature is the very definition of a miracle.

I am beyond thankful for all the things that came together to make it possible for me to experience this. In particular, I am so unbelievably grateful that with all the health problems I’ve been having, my current period of decent health came at exactly the right time to allow me to trek across the country for this incredible life experience.

Baruch atah Hashem Elokeynu melech haolam shehecheyanu v'kiyimanu vihigiyanu lazman hazeh.

Blessed are You, L-rd our G d, King of the Universe, who has granted us life, sustained us and enabled us to reach this occasion.

Progress and fun plans!

Yay steroids!

After a couple weeks on a lot of Prednisone, I’m feeling much better and my numbers are back to baseline. Since I’ve been on a higher dose for longer than usual, my doctor wants me to taper off very slowly to reduce the chance of reacting negatively. So I’ll still be on Prednisone for a few more weeks, and hopefully will continue maintaining my lung function once it’s stopped. Prednisone is notorious for miserable side effects, but it just seems to make me normal: Instead of being hyper, I’m just less fatigued. Instead of being ravenous, I just have an almost normal appetite for a change. I think Prednisone kinda works for me! Too bad long term steroid use isn’t actually good for you.

They finally removed the PICC line, which was a big relief! We discussed possibly getting a port placed, but first I need to have a consult with hematology to make sure they think it’s safe, given my clot history. I also still need to find a pulmonary rehab, which admittedly I haven’t put much effort into. Though I am GREATLY appreciating the fact that I can mostly walk and manage day to day activities again, I’m still slow and easily winded, and can probably be doing at least somewhat better. Hopefully pulmonary rehab can help me bump things up to the next level.

In the spirit of feeling better, I suddenly decided on Sunday that I want to see the full solar eclipse. Fortunately I come by my crazy honestly, and with minimal effort my mom was persuaded to join me. We somehow managed to score a hotel not too far from the zone of totality, so on Sunday my mom and I will hop in the car and drive to Tennessee for a hastily planned road trip. We can’t remember the last time we took a vacation together, so it should be a fun adventure! Wish us luck!

Fail

Well that was a fail.

Right after my last update, I started running a low grade fever. My cough also increased and I became more short of breath. By the time I saw the doctor last week, my pulmonary function numbers were basically back to pre-hospital levels. I wasn’t surprised, based on how I was feeling, but it was still disheartening. I also saw a physical therapist and tried a brief stair stepping exercise, which I couldn’t even finish and found completely exhausting. Apparently that was surprising and I shouldn’t be this short of breath, even with where my pulmonary function numbers are at. Clearly IV antibiotics didn’t accomplish much, so my doctor thinks it’s less about infection and more about inflammation and air trapping. Air trapping happens when inflammation and/or mucus starts blocking off small airways and air can’t be easily or completely exhaled. The leftover air keeps the lungs inflated and makes it harder to inhale, causing shortness of breath. Air trapping is also the kind of thing that can start to snowball once it starts and be difficult to get back under control.

The problem is there’s no quick and easy treatment for air trapping. Additionally, the last few times I’ve tried steroids for inflammation we didn’t see a significant response. This time we’re trying a stronger, longer dose of steroids, and looking into pulmonary rehab. Pulmonary rehab, like most forms of rehab, isn’t exactly a good time and requires a lot of effort. I’m not looking forward to it, but then again I don’t really enjoy not breathing, so I guess it’s the better option. I’m still trying to find a local (aka not Philly) pulmonary rehab program, so if anyone is familiar with any please let me know!

We also decided that the antifungal treatment wasn’t making any difference in my symptoms. It was definitely effective in terms of eradicating the aspergillus, but clearly that didn’t actually impact my lung functioning. So we gave up on that and stopped the antifungal medication.

I still have the PICC line, but it’s pretty much at my discretion at this point. I did ask to increase the IV fluids for a bit to help keep things loose in my chest, but I’m running out of patience and will probably have them pull the PICC this week. My skin never does well with tape, and I’m at the point where I don’t feel like dealing with rashes and blisters for such little return anymore. At least that will be one less annoyance in my life!

Getting there

As of last week my pulmonary function numbers were back to baseline, though not QUITE at their highest. I wasn’t feeling as good as I usually do after 3 weeks of IV antibiotics, but my doctor didn’t think it was worth doing an additional week, since I did improve and the standard for treatment is 10-21 days. We decided to keep the PICC line in for 2 more weeks though and continue IV hydration as needed. If I maintain lung function after 2 weeks, we’ll pull the PICC line; if I start to slide, we’ll look into putting in a port, which is a surgically implanted, permanent IV. The advantage of a port is we can easily access it whenever I need IV hydration or antibiotics without having to put in a PICC line every time. The disadvantage is that it has a risk of blood clots, just like a PICC line, and everyone is anxious after the blood clot drama in December. Even if I hold on for the next 2 weeks though, I’m pretty sure I’ll be getting a port sometime soon. It’s just not feasible to keep putting in a PICC line every few months, and the port will be far more convenient.

I’m still very tired, though my endurance seems to be slowly improving. My new thing is I’ve been getting a lot of headaches recently, which isn’t fun. I don’t know if it’s because I haven’t gotten allergy shots while sick and seasonal allergies are creeping back up on me, or if my sinuses are acting up again and it’s time for another round of sinus surgery. I’ll be resuming allergy shots soon, and if that doesn’t help I’ll follow up with my ENT.

Despite all this, I’ve been fortunate to have a bunch of visitors, and have been able to get out occasionally for some low-key fun. Hopefully I will continue feeling better and will manage to be a semi-normal person for at least part of the summer. My recovery has been slower than usual, but I AM recovering, and hopefully I’ll be able to stay away from respiratory infections and hold it together for more than a few weeks this time around. Fingers crossed!

Homeward bound!

I'M GOING HOME!!!!!

Ouch

Last week they somehow managed to mistake me for a pincushion. At one point I actually had 3 separate IVs, which I’m pretty sure is my all-time high, and honestly seemed a bit excessive. A friend looked at my arms and commented that I was rocking some hardcore body modifications. Forget about piercing the skin, I go straight for the veins! Maybe I’ll start a new trend!

As usual, things are moving slowly. But, they ARE moving. My chest is a little less tight and my airways are a little clearer. Lately it’s been taking 3 weeks of IV antibiotics to bring me back to baseline, so that’s what I’m expecting this time around as well. However, I will NOT be hospitalized that entire time. My goal is to get out and set up on home infusion before Shabbos. Fingers crossed!!

The Pole People return!

The latest batch of Pole People!

One foot in front of the other

At a doctor’s appointment last month, we agreed that I was kind of hovering on the edge. Not terrible, not great… I could go back on IVs, or continue with the prednisone and oral antibiotics and come back in a month. I chose the latter, and by the end of May I was actually feeling significantly better. I was breathing and walking more easily, and even got out to enjoy a couple day trips without the wheelchair. I stopped the prednisone last month, and the oral antibiotics a week into June, thinking I had actually managed to avoid an exacerbation this time.

Last week, the other shoe dropped. After being off antibiotics for a week, my endurance started slipping again. I quickly resumed taking them, but a couple days later I suddenly started running a fever. By the end of the weekend the fever had settled, but my endurance was shot and I was dealing with miserable coughing fits and loads of upper respiratory irritation. Of course, I can’t just follow standard illness models like a NORMAL person. If I was a normal CF patient, I’d be horribly congested – but I’m not. If I was a normal asthmatic, I’d be wheezing – but I’m not. I’m just in this bizarre no-man’s-land of shortness of breath and upper respiratory irritation and dropping pulmonary function numbers. I wouldn’t want my doctors to get BORED or anything! The oral antibiotics and prednisone clearly aren’t cutting it, so we’re busting out the big guns, and I’m heading back to the hospital for IV antibiotics and hydration.

Honestly, I was not my usual Zen, happy-go-lucky self last night. Since December I’ve been going in the hospital and on IVs every 3 months, and not actually feeling that stellar during a lot of the time between admissions. It’s draining and, frankly, frightening. I’ve known since I was 15 that CF is a progressive illness, and the fact that I’ve made it this far is truly miraculous. I am so thankful for all I’ve managed to accomplish in 38 years despite – or possibly because of? – this disease. I am so very grateful that even though I’ve become disabled and had my life turned upside down, I’m somehow coping with it more calmly and gracefully than I ever thought was possible. But still, putting one foot in front of the other, day after day, while feeling awful is exhausting, and watching this snowball pick up speed is scary.

The one person I desperately wanted to talk to last night was… Mikey. How did you do it, I wanted to ask him? How did you get through this for so many years with a laugh and a smile and a Day By Glorious Day? What is your secret?? Tragically, CF took Mikey away from us a long time ago, and I can only learn from his example without hearing his advice. But, I guess, maybe, I’m already doing it. I keep putting one foot in front of the other and not giving up. I keep squeezing as much life as I can get out of the healthy moments, and even some of the not-so-healthy moments. It may feel like my world keeps getting smaller, but I’m still managing to live within it. And, most of the time, I’m still laughing.

Sometimes, it doesn’t feel like enough. But, hopefully, it will be.

Here we go again

Well, this time I made it over 3 weeks off IV antibiotics before catching a cold. Fortunately, this infection seems less intense than the one I had in January. The congestion isn’t quite as bad, and I haven’t really been feverish. It did, however, move into my lungs, and I’m dealing with a fair amount of chest congestion, upper respiratory irritation, and fatigue.

I almost always have a bottle of antibiotics on hand, so this time I started taking them as soon as I got sick, before I even spoke to my doctor. My doctor then added a second oral antibiotic, and told me to stop the blood thinners a few days early and start taking the anti-fungal medication to treat aspergillus. Hopefully the antibiotics will help prevent CF-related bacteria from getting completely out of control while my body fights off the viral infection. I’m cautiously optimistic that I won’t end up in a full-blown CF exacerbation this time, since I started antibiotics right away and my endurance is still pretty decent. Fingers crossed!

Fortunately, before getting sick, I was able to make my annual trip to visit the Yolkut family for the 12th consecutive Pesach. Anna and I were roommates in college, and during chol hamoed our other roommate Sarah came down from Cleveland to visit. It was the first time all 3 of us have been together in YEARS! I’m so glad I was able to be there for a great roommate reunion!

I’m well aware that spending the first few days of Pesach with loads of children is probably why I’m sick now. I knew going in that it was a risk, I tried to be careful and washed my hands a lot, but clearly it wasn’t enough. But, I have no regrets. Managing chronic illness is always a balance between maintaining your health and living your life. Sometimes you fall off the edge in either direction, and that’s OK. Sometimes I cancel or avoid activities in order to protect my health, and sometimes I knowingly expose myself to risks in order to do things I enjoy and be with people I love. Living a completely cautious life would be unfulfilling, and living completely carefree would be foolhardy. I try to find my way somewhere in the middle.

Hopefully the antibiotics will keep me from falling off the cliff this time around, and hopefully treating the aspergillus will eventually have a positive impact on my overall health. And hey, no more blood thinners! Now I can do all the high risk activities! Bungee jumping, anyone? 

Almost there

My cough is easing, my endurance and energy are improving, and overall I feel much better than I did a couple weeks ago. My pulmonary function numbers, however, barely moved. We didn’t really expect them to though, since the same thing happened in December: I got significant symptom relief, but limited pulmonary function improvement. We’re going to do one more week of antibiotics to solidify things, and then start working on long-term plans. The first step is seeing whether I maintain my health once the antibiotics are stopped, or if I fall apart as quickly as I did last time. I’m hopeful that I’ll do better this time as long as I don’t catch another cold like I did in January. So if you have any respiratory infections, please stay away from me!

I need to stay on the anticoagulant for another month once the PICC line is pulled to make sure I don’t get another clot, and then we’re going to work on treating the aspergillus and seeing whether that makes any difference in my pulmonary function. Here’s hoping I can keep it together until then, and that aspergillus is actually the culprit so that I’ll see improvement once it’s treated!

Home sweet home

My meds are stabilized and they're sending me home on IV antibiotics this afternoon. Looking forward to a quiet, uninterrupted night's sleep in my own bed!

Back to the hospital

The good news is, I’m doing better than when I was dealing with a cold in January. The bad news is, I never quite managed to fully recover. We tried oral antibiotics, we tried Prednisone, but they didn’t seem to have a significant impact. I’m basically back where I was before going on IVs in December: daily coughing fits, low endurance, fatigued, and just kinda slogging through day by day.

For the last few months my doctors have been discussing starting treatment for aspergillus, a fungal infection that has been in my lungs for decades. The thing with aspergillus is that it doesn’t necessarily have any symptoms or impact, and there’s no way to know whether or not I’ll get any relief from treating it. It’s also not a quick fix, and will take months of treatment. However, aspergillus can slow response to treatment during CF exacerbations and impede full recovery, so it COULD be a factor in my recent health issues. All plans were put on hold when I got the blood clot, however, as the medications to treat aspergillus interact with the blood thinners that I’m still on due to the clot.

By the end of this month I should finish up the blood thinners, and we can get to work on the aspergillus. In the meantime, however, I’m feeling pretty crummy – so we’re gonna go for another round of IV antibiotics and try to get things back on track before then. I’m heading to the hospital whenever they have a bed for me, hopefully later today. We’re also going to work on an ENT consult to see if my sinuses are contributing to my health issues, as well as a glucose test, because apparently untreated CF-related diabetes (CFRD) can cause respiratory problems. Fun fun!

Here’s hoping we get some answers and effective treatment options soon. And that I manage NOT to catch a cold as soon as I finish IVs this time around!!

Another infection

I wish I could say that everything has been great since I stopped IV antibiotics a month ago, but that would be a lie. I made it about a week and a half before coming down with a cold. For a normal person this would be a minor inconvenience, but with my compromised lungs any respiratory infection has the possibility of setting off a CF exacerbation. I was hopeful, however, that I might be able to weather it without major complications, since I had just completed a round of IVs and in theory I was at my strongest.

Unfortunately, I was wrong.

The infection moved into my chest and triggered the CF exacerbation I was hoping to avoid. I started oral antibiotics almost 3 weeks ago, but through last week I was still having coughing fits every day. I was also running a low-grade fever most of the time and my doctor wasn’t sure why. To add insult to injury, I’ve also been struggling with gastrointestinal issues, so eating has been difficult. And coughing doesn’t exactly help with nausea.

Overall it’s been a really exhausting month, but I FINALLY seem to be making some progress. Though I’m still congested, my cough seems to be easing, and so far today I have not had a fever for the first time in ages. My stomach is still sensitive, but it’s gradually settling down and I’ve been able to eat a little more easily. Hopefully things have finally turned the corner and will only continue improving.