Climbing back up the Mountain

I was discharged from the hospital 10 days ago, after nearly 3 weeks of intense antibiotic and airway therapy for a lung exacerbation due to Cystic Fibrosis.

It was the sickest I have ever been in my entire life – and I have had some doozies over the past several decades.

And it isn’t over yet. 

Since coming home, I had to get used to being on oxygen full-time. I am hoping and praying that I will not need it indefinitely, and that it is just a matter of recovery. But in the meantime, I depend on a machine to create the O2 and recieve it via a nasal cannula.

At home, I am attached to this…


But we bit the bullet and decided to get a portable Oxygen concentrator to allow me to leave the house without those heavy canisters. It runs on electricity and batteries, and when fully charged, lasts 8-9 hours (based on the amount of oxygen I need right now).


With batteries, it is about 7 pounds. It seems a whole lot better than worrying about filling canisters and having enough around.

I do have a giant canister that lasts about 6 hours, in case of power outage, sitting in the corner just in case. 


I have some more tests to get done this week and will see my CF doctors next week to see how my lungs and kidneys are doing. As soon as my creatine levels are back in a healthy range, I am going back on inhaled Coliston (the last resort antibiotic) for a month or so, to try to keep one particular bug from blowing up again.

My priorities now are getting stronger, trying to regain some of the 8 pounds I lost, keeping my lungs as clear as possible, resting, and tryig to do some “normal” things. Folding laundry, fixing a meal, walking to and from the kitchen to keep my water bottle filled…seriously, I have to super hydrate, so I fill it up every hour or so.

Then there is the very important task of reorienting my kitties to a mommy-ruled domicile. Daddy has a tendency to spoil them when I am not around! I admit that it has been hard not to spoil them since I came home – I missed them so much!!

I am also dealing with a lot of conflicting feelings – gratitude over my recovery, fear about how sick I was, dread that this isn’t the worst I will face, but joy that right now, I feel safe and relatively comfortable.

I just have to remind myself from where I’ve traveled. And that my husband and family are here to help me along this journey.

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Relinquishing Control in the Hospital

I just received a letter in the mail which included a six-page questionnaire about the care I received while in the hospital for 2 weeks in September.

They ask questions about the care I received, the hospital environment, my hospital experiences, tests and treatments, etc.

I am under no delusion that my care is very complex. At home, I manage 15-20 medications, test and monitor my blood sugar for diabetes, and perform airway clearance (lung therapy). It’s not just a matter of taking a bunch of pills each day. Many of them have to be taken at specific times, in relation to waking up, eating, performing certain activities (like driving), avoiding potential interactions, managing treatment side effects, etc.

So when I’m admitted to the hospital, I have to turn in all control to a series of more than a handful of different departments to manage.

Every hospitalization is a challenging experience. I’m awakened early (sometimes 4am) to get blood taken, doctors from 3 or 4 different specialties visit me daily, each asking all of the same questions, poking and prodding me according to their focus. I feel like I have to give up agency over my own body. I succumb to the authority and power of mostly strangers. Continue reading

The Anatomy of an Interruption

There I was, getting better from my recent lung infection, when the other part of my body that Cystic Fibrosis likes to mess up – my belly – decided to stir up some trouble.

I was seriously at a point in my life where I was beginning an “overhaul” of me – ToniV. It sounds silly, but a few days prior, I had actually taken a poster-sized foam board and outlined my plan for overhauling 7 areas of my life. 

Some of the Gastro Intestinal problems that patients with CF can face, that I have, include Pancreatic Insufficiency (the mucus blocks digestive enzymes from leaving the pancreas), CF related Diabetes, GERD, chronic Distal Intestinal Obstructive Syndrome (called DIOS, which is frequent bowel blockages caused by mucus and poor digestion), Chronic Pancreatitis, and Gastroparesis (slow emptying gut). Continue reading

Back at the Hospital…

I am on day six of yet another stay at “Club Med”.

“Club Med” is how many Cystic Fibrosis patients affectionaty refer to the hospital.

This is becoming a bad habit. I was just here in May for pneumonia infections and IV antibiotic treatment, as well as last December, and June, and 3 days later, back into the hospital for an intestinal blockage a week later…

You get the idea. Continue reading

The Price of a Few Months’ “Life”

As if my body somehow can read a calendar, I am back in the hospital. I have been averaging an inpatient stay for IV antibiotics every six months or so, and I was last inpatient in December, so it’s about time.

Things Start Brewing

It was only two months after my last hospitalization when I started feeling sick again. It started as a sinus infection – the same mutli-resistant bugs that colonize in my lungs also live in my sinuses.

Three weeks of oral antibiotics didn’t work, so I ended up needing an antibiotic rinse for another few weeks. During that time, the bacteriae in my lungs started florishing, and over the next month or two, we exhausted all of our other options.

I visited my CF clinic several times in the past month to check my lung function, and each time, my numbers went lower and lower.

Decision Time

By the end of April, my FEV1 – a measurement of how much air I can blow out in one second – was down nearly 30% from December.
I was coughing more, had increased junk in my lungs, and got to the point where I was sleeping contantly.

I called my doctors on Monday and they decided to admit me the following day. I had to wait until nearly 8pm for a bed, but started IV antibiotics immediately.

A huge challenge lay ahead of me, however. My doctors usually prescribe three IV antibiotics – medications that are very toxic to the veins. Instead of “regular” IV lines, called “peripheral lines,” we need to use an IV that goes into a much larger vein.

Among the few options I had was a PICC line, an IV that is tunneled into the upper arm and threaded though a vein that empties near the heart. The kind that I use is stitched in place, and has two lumens (tubes).  Another benefit is that the nurses can draw blood from it – like a spigot, which would mean I wouldn’t have to get stuck several times a day.

A PICC line can last several months, which is useful because I am on these antibiotics for 2-3 weeks at a time. However, because of damage to my veins from previous blood clots, inserting a PICC line is more challenging.

It is inserted under x-ray, in the Interventional Radiology department. In addition, due to the amount of work and time involved, I receive “conscious sedation” – a combination of pain and anxiety medications – to make the process less painful and scary for me.

The biggest hurdle is getting on the schedule. I woke up Wednesday morning hoping to get it placed, but I got bumped.

Playing the waiting game.

The next hurdle is dealing with the delicate “regular” IVs and having blood drawn several times a day until I get my PICC line. The smaller veins in my hands/wrists were getting irritated and flimsy. I was running out of places to stick.

The aftermath of several blood draws and a blown IV .

On Thursday, they attempted to place the line, but couldn’t get the line in after nearly 3 hours of work.

Attempt #1 failed.

 

I was despondent.

I was told that they would try again on Friday, and I waited impatiently. I was miserable. Since Tuesday, each morning, I had to abstain from food and drink after midnight because of the sedation (aspiration of food and drink is possible when sedated).

Friday came around and I was starving, getting dehydrated (which makes it harder to place IVs and draw blood), and completely exhausted.

Was it ever going to happen?

As the day went on, I kept getting mixed reports that I was on the schedule. Finally, a note popped up on my calendar slating my PICC placement for 6:15pm. Six o’clock came and went. 7pm, too.

Interventional Radiology department (IR) rarely places PICC lines at night or on the weekend unless there are emergencies, so I was getting really worried that they’d bump me again.

Wasn’t this urgent?

I needed these medications and I was quickly losing access options!! I was at risk nutritionally and feeling really scared.

Around 8:15 pm, as I was frantically texting my husband and a few of my CF friends for support, there was a knock at my door.

A transport rep showed up at my door, ready to take me down to IR. I couldn’t believe it!

My chariot awaiteth.

I was wheeled downstairs, moved, and prepped.

For some reason, instead of trying to place a line in my right arm, they decided to try my left arm again, requiring the doctor to perform an angioplasty. They blasted and plowed their way through my clotted vein, finally achieving success after 2 1/2 hours.

Scary looking, but a success!

 

Despite medications and numbing shots, I was very uncomfortable and scared. I must have reactively winced a dozen times.

But it was finally done. No more pokes for the rest of my stay (as long as the PICC line remains functional)!!

Like the Heavens Opened

I slept like a log Friday night, and woke up Saturday morning finally able to eat breakfast for the first time since I had come into the hospital. Pancakes and bacon never tasted so good!

I am thrilled to finally have a PICC line, making it much easier to get my antibiotics and for the nurses to draw my blood twice a day.

Thank you, God for helping me hang onto the last drops of faith and patience I could find, my amazing nurse, my doctors who harassed IR, my hubby/family/CF friends who kept me sane and entertained.

The Blessings Keep Coming

Another bonus of this hospitalization is that from now on, CF patients will be cared for on a particular floor. That means continuity of nursing staff – the nurses will see us much more frequently, building more experience with CF patients, thus creating an all-around better patient experience.

The Nurse Manager even remembered me from a 3-week hospitalization from fall 2012. She gave me this cute little bear for the nurses to sign!

I have already seen and felt the positive changes taking place as a result. Today, I walked 5 laps around the unit – a total of 1,650 steps, and when I got back to my room, Father Jeff was waiting to give me Communion. I am feeling very loved and lucky today!

And by sheer coincidence, a fellow CF patient – a.k.a. a “Cyster” (a word we use to refer to other women with CF) – is in the room right next to me. I recognized her cough and sent a text message to her, asking if she was in the hospital and on this floor.

This is the third time we’ve been hospitalized at the same time, so it was a crazy coincidence!

And, yes, it’s possible to recognize someone by their cough!

Although we’re not allowed to hang out or be near each other due to contact precautions, we can wave to each other and have quick doorway conversations.

Thankfully, we can send text messages to one another!

It’s nice to have someone else in the trenches with me (although I hope she feels better ASAP!!).

Lastly, and most importantly, I am thrilled to notice overall improvement since the week began.

My cough has decreased, I am getting more junk out, I have more energy, and I feel like my lungs can hold more air. I am sure that my doctors will repeat my lung function tests sometime in the next week, so I really won’t know how far I’ve come until then.

Although the week was pretty brutal, I am glad that all of this work is beginning to pay off. I view this hospitalization as an investment – if I want to have a fun summer, I have to pay the cost. It sometimes doesn’t seem fair, but that’s the way my life works.

The Anatomy of a Hospitalization

I just got back from five days in the hospital. I thought I’d share exactly what goes into a typical hospitalization for me.

I had been sick for about two weeks when I called my doctor this past Monday morning. We had tried several different medications to treat my lung infections at home, but when my heart started overworking itself to compensate for my sick lungs, I knew where I was going.

As always, I tried my best to avoid going into the hospital, but I reached a point where there was nothing left that they could do for me at home.

Another Day in Paradise

This was a particularly inconvenient time because Ken and I had planned (what was going to be) an amazing night in Boston – seeing Billy Joel play Fenway Park. I couldn’t have imagined anything more exciting than this event. Anyone who knows me knows how much I love Billy Joel, and at Fenway, well, you couldn’t get much closer to a perfect night. So when it became clear that I needed IV antibiotics, I had to buck up and accept that we’d miss the show. (I’m so happy that we were able to sell the tickets to a friend who is also a huge Billy Joel fan. News flash – they had an amazing time!!)

Me and my stuffed dog. He's a great arm rest!

Me and my stuffed dog. He’s a great arm rest!

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Making the Decision to go on IV Antibiotics

In the next week, my doctors will likely admit me to the hospital for Intravenous (IV) Antibiotics.

People often ask me, and even in discussions among other CF patients, “when do you know it’s time?”

CF patients tend to colonize bacterial infections that grow and even thrive in tiny recesses of our dark, moist airways. Over time, these infections learn to resist antibiotics to the point where only a few medications work, and those medications only come in IV form. I do my IV antibiotics either in the hospital, at home, or via a combination of the two.

During a typical course of IV antibiotics, I take 2 or 3 different medications for a 14-21 days. Sometimes, I only go into the hospital for 3-5 days and finish the course at home using a PICC line. However, If I am very sick, they may keep me there for the entire time, providing various levels of care and monitoring.

What I get to "look forward to soon - "the view from a hospital bed.

What I get to “look forward to soon – “the view from a hospital bed.

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