Hope Sinks

Remember my last post, when I was so full of hope and excitement that if I can get myself as fit as I can, my life could change.

In my head, I had visions of hiking, doing normal household stuff and running errands, going out socially for more than 40 minutes, and even feeling well enough to go on a vacation (it has been 11years…we have planned so many trips that we had to cancel because I had to go into the hospital or was close to it).

Then I got sick. Too sick to start working out. MRSA sick with constant fevers, cough, sinus issues, and fatigue. Oh and the Flu. I took the Tamiflu and also started antibiotics. By the end of week 2 on antibiotics, I told the doctor I wasn’t feeling quite better and that probably I needed another week.

I finished week 3, and felt marginally better. Stronger. And as fate worked out, the weather was warming up enough to use my treadmill in the basement (it is not heated).

Three days after finishing the antibiotics, I started coughing, but figured that it was just left over stuff from the recent infection.

After another three days, I suddenly began coughing uncontrollably, felt my fever coming on, was feeling very junky in my lungs, and I knew that my MRSA was ramping up again.

I spoke to my doctors on Monday, who put me on a different antibiotic, and tonight – 24 hours later, laying on the couch unable to sleep, coughing which sounds like a pipe has burst, and having to wear my oxygen (which is a huge bummer because it had been weeks since I needed it more than a few hours at a time).

In the meantime, several members of my family have had their own issues to deal with, and I find myself having difficulty keeping my head above water.

I am tired of being sick. I’m tired of coughing. I’m tired of fevers ravaging my body with aches. I’m tired of having to judge whether doing a little laundry is going to force me to nap for three hours later That day or have to rest the entire day tomorrow.

I’m sorry that this is not a positive sounding post, but it’s almost midnight, I feel too awful to sleep, and my mind is racing with all the things that I am probably never going to get to do. Thanks I’ve been trying to do for years, thinks that any 46-year-old should be able to do. I’m sorry that this is not a positive sounding post, but it’s almost midnight, I feel too awful to sleep, and my mind is racing with all the things that I am probably never going to get to do. Things that I’ve been trying to do for years, things that any 46-year-old woman should be able to do.

The cliché about having your health being everything, is so damn accurate that it hurts. And what makes it worse is that I am watching the world go by. Outside, kids are playing and people are walking their dogs. The movies and TV shows I watch because I’ve read everything that I have and honestly cannot concentrate on anything else at this point – keep telling me where to go for vacation, parties I should be attending every weekend, planning for summer, etc., On Facebook, and in articles, I get to read about life as a parent, exotic places to travel to, and the cool/ fun/ amazing adventure others are experiencing.

I feel like there really isn’t much more to look forward to, when every time I try to plan something, whether it’s to go to the store myself, to work out, or to do something big like visiting my in-laws, my health blocks me from having a life.

Losing hope again.

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Reclaiming myself

It’s been two years since I ended my three-month stint on the then-new CF drug targeted at my particular mutation(s). If you recall, I had a lot of side effects and medication interactions that forced me to call a cease fire.

I lost a lot of lung function during that time, and have not yet been able to get back to where I was, prior to the medication.

Now, it could have been coincidence. I could still have had the series of CF lung exacerbations and hospitalizations had I not taken the medication. I might still have ended up needing Oxygen at home after one particular infection flare-up, and still need it when I am sick. I might still have lost a lot of strength during those hospitalizations. And certainly, it had nothing to do with having Sepsis a year ago.

All of that, plus my existing CF complications, have driven my overall strength, stamina and unfortunately, my willpower, to an all-time low.

I have decided, however, that I am not giving in. Strength and energy have lost in this war. Now it’s time to go to battle to regain what I have lost. It’s time to reclaim myself.

I was never an athelete, but I had strong lower body muscles from dancing in high school, going through ACL reconstrtion rehabilitation, and doing Pilates for the past 20 years. I very suddenly lost my calves of steel during a September 2016 hospitalization, and my overall muscle tone disappeared.

So I have decided the one thing I can do that can help support my body and improve my energy and strength is a solid commitment to fitness. I used to be a gym rat, but too-frequent infections, symptoms – pain and nausea – from chronic pancreatitis, and side effects from several medications, have collectively rendered my gym membership useless.

So I’m starting from scratch.

It all starts with walking. I need to build up my cardiovascular system to get help my lungs and strengthen my legs. I will then return to light-to-moderate weight training to increase my overall muscle mass and give me that strength boost hat I currently lack. And then move onto hiking outside. Maybe on the flats, but getting my groove on – outside in the Vitamin D and fresh air – will be amazing.

Yeah, I’m sure I’ve written about this stuff before, but I feel that so many of my systems can benefit from this new commitment. I have to do this. So I got out my whiteboard and started writing down all the possible benefits.

  • Better moods. Helping my depression and anxiety.
  • Strength to carry me when my lungs are working harder when sick.
  • Conditioning. Keeping my heart pumping efficiently.
  • Lung clearance. Nothing like a good cough to get that junk out!
  • Digestive support. Keeping things moving.
  • Energy to live. Housework, socializing, driving. Holidays.
  • Confidence. I’m tired of being weak and on the sidelines, feeling unworthy to contribute.

I am going public with my plan for accountability.

I may not move mountains, but at least I will be able to climb a few hills. And to me, right now, that can make all the difference in the world.

Waving the White Flag

Tomorrow, Tuesday, my doctors are admitting me for severe lung infections due to my cystic fibrosis.

Interestingly, it has been eight months since my last admission. I have been taking oral antibiotics to treat my MRSA infections, but after three months and several courses of these antibiotics, my lung function continues to drop and I continue to be actively sick. Aside from the MRSA, I have a handful of other bacterial strains that often Colonize CF lungs.

What stinks is that every time I go on antibiotics, I would start to feel a bit better, but within a week of finishing my 2 to 3 week course, I get sick again. I have to say it’s really hard to know when to wave the white flag and admit to my doctors that yes, I do need their intervention.

I will get a PICC line IV (long term, semi permanent) inserted into my arm or chest, which allows medication to go into my bigger veins were they won’t irritate the smaller veins closer to the surface.

The PICC line is usually a double lumen kind, which means that there are two tubes entering my vein so that I can have two medications or fluids running at the same time.

I will likely be taking a cocktail of three IV antibiotics, each with their own schedule.

Considering one of my medications runs for 12 hours a day, there are two other medications that have to run on their own schedules, and I usually receive IV fluids 24 hours a day to protect my kidneys, both IV lines are close to constantly being used.

Hence is the typical process of the 2 to 3 week hospitalization for a CF lung exacerbation.

It’s uncomfortable on so many levels, it can be painful, I get a lot of undesirable side effects, and I become sleepless and invariably stressed out. I feel bad for my nurses and my physician team because I get very emotional when I’m inpatient.

Depression and anxiety make things worse, as it does for many CF patients. Imagine being stuck in a 10 x 10 room, being allowed to leave the room only when scheduled for a test, having to eat, sleep, and do everything else from a lumpy bed in a tiny room with a window that often faces a bleak city scape. Oh, and going no longer than 10-20 minutes without someone walking into my room.

Despite all of the things I can and often do go wrong, however, I know that I am going inpatient to get better and to slow down the progression of the past few months. I am to the point where even getting up to shower by myself is a huge challenge, let alone being able to do do anything like cooking or cleaning or the basic stuff that people do when they live their lives.

So for the next few weeks, I will be doing everything in my power to stay calm and sane. I still have this option in my arsenal, so I am thankful. Not ready to think ahead to a point when no more antibiotics work for my bugs. Until then, I continue to fight.

Ten-Week Update

Over the past two months, I have been recovering from a 3-week stay in the hospital for lung infections due to some pretty serious bugs which are tough to treat. I also ended up with a blood infection, and my kidneys suffered some damage from the strong antibiotics I had to take via IV.

When I first came home – for the first time on home oxygen – I was not prepared for how difficult the recovery journey would take.

The ride home from hospital

I had lost significant muscle tone and overall physical strength. I had sapped most of my reserves of hope that I would ever be “well enough” again. I was also on 2L oxygen 24/7.
It was through sheer stubborness, plenty of crying sessions, dozens of prayers for healing and courage, that mentally, I could get through this experience.

Physically – well – we are not quite there yet. The good news is that I only need Oxygen for extreme exertion (such as going grocery shopping, driving, etc.), I don’t need my husband’s help to shower, and I can now cook a few days a week.

I just began driving about 2 weeks ago – my upper body strength wasn’t much to begin with, but one morning, I decided that I was going to run errands by myself. Good thing I brought along the portable O2 concentrator because I ended up having to sit on the floor at the store to rest. But I made it to the pharmacy as well, and carried in and put away all my purchases. It took 2 days to recover, but it began getting the ball rolling.


I actually felt well enough to celebrate Easter and Mother’s day – holidays that fall into one of the times of year that I am sickest.

Mother’s Day with one of my Godsons

The best medicine – one of my cats!

Ken and I at Easter…a rare sunshiny day! My rock!

Unfortunately, I have had to miss some other important family events due to my chronic issues and how strong/not strong enough I felt on those days, which were very difficult. And my CF is trying to take me down again with some very unpleasant belly problems. But my doctor is on top of it and trying to keep me out of the hospital

As spring turns into summer, I hope to enjoy life more, and maybe even have some energy left to enjoy friends!!!! Wouldn’t that be wonderful???

I have to say, if it weren’t for Facebook, I would not have the support and encouragement that I have. Even though I don’t much get to see friends, those who really care have made themselves known. Prayers, memes to make me laugh, cards, care packages, letters – the love behind it all empowers me to keep pushing, to keep fighting.
There are so many people I want to thank, and cannot possibly type that long right now, but you know who you are.

Remember that the smallest victories can make the biggest impacts!

Ask Me Anything!

Are you curious about somethinng in particular regardig Cystic Fibrosis?

Have you ever wondered what it’s like to experience a certain test or treatment?

Do you have any questions about living with a chronic illness?

If so, I am opening up my blog for the next week or two and will be collecting questions and trying to answer them.

Please note that I am not a doctor, cannot make diagnoses, or suggest medical treatment, but I can share my personal experiences.

So if there is something you want to know about me and/or Cyatic Fibrosis, please leave your question(s) in the comment section and I will do my best to answer them.

I am lookong forward to hearing from you!

~ Toni V 

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.

Where do I go from here?

NOTE: There is a medical photo of an IV that may upset some readers. If thhis makes you uncomfortable, please do not continue.

Wow, where do I begin?

I am at the end of day 12 in the hospital. I knew that it was coming, my doctors have been trying to get me back in here since November because my infections kept flaring up.

First few days…most of which I do not remember

It’s always hard to tell when to pull the trigger and make the decision to come into the hospital and go on IV antibiotics.

Two and a half weeks ago, however, this flareup came on fast and furiously, and it was the Pseudomonas aeruginosa bugs that were in charge this time. These are the big bad bugs that I can no longer treat with oral antibiotics. So I have to go on at least two IV antibiotics for those strains, as well as an additional IV antibiotic to treat my MRSA.

Since my last hospitalization in September, I had been on oral antibiotics for my MRSA almost consistently. And now, everyone else wanted to come out to play.

When I was admitted, my inflammation levels were the worst that I have ever experienced. It freaked out my medical team. 

There is a number that they look at that can measure information, called C Reactive Protein. 

Normal range is 0 to 10. When I was admitted, I was at 156. Twelve days later, it is finally in the 20s. Getting closer.

Typically, after the first few days of antibiotics, I start to show some progress, but my numbers really weren’t going down. So my doctors repeated tests on my bugs, which basically involves me coughing up mucous and then putting it in a petri dish to grow it and see which anabiotics kill it. 

It turned out that one of them was now resistant to one of the medications I had been taking for an entire week. So they had to start a new medication for me, one that I have only had once in the past, but I had it via nebulizer, inhaling it instead of receiving it in my vein.

So I had a new drug added to my cocktail, and stopped the one that wasn’t helping.

Colliston is an old antibiotic that is rarely used these days because of its effects on the kidneys and how hard it is on the body. However, it is the only antibiotic to which one of my bugs will respond. It is a last resort.

My “jetpack” – the unit attached to the wites attached to me, monitoring my heart

 

The good news is that it started to work, the bad news is that it’s affecting my heart. So I had to stop taking a bunch of other medications that can cause the same heart injury, which sucks because they control a lot of the more unpleasant side effects of heavy duty IV antibiotics.

I also came into the hospital with a possible blood infection. I have had three series of double blood cultures and it appears to have subsided thanks to one of the IV antibiotics that also treats my MRSA. There’s a possibility that perhaps I did not have a blood infection and that one of the blood samples was simply contaminated, but they cannot take that chance and not follow protocol to the end.

So here I am…typically I would be close to discharge around The two week mark, but my doctors have shared that this is not going to resolve as quickly and smoothly as my other flareups.

PICC line with double lumen, so I can receive two medications at the same time

I am facing additional time with my PICC line, which makes me nervous because I have had three separate blood clots as a result of picklines over the years. It’s also very uncomfortable and limits a lot of things including the way I sleep, using my arm, etc.

I have also been on oxygen and might not be off of the oxygen when I leave, whenever that is. I am trying to wrap my head around the fact that I might have to go home on 24/7 oxygen. Hopefully it would be temporary, but with CF, you never know what’s going to happen.

In my head, I realize how very very sick I am – how sick I was – and how far I have to go in order for my lung function to increase. But my emotions have been riding a roller coaster that has not stopped since before I was admitted.

Yes, my inflammation numbers are going down. I am feeling a little bit stronger each day, and I actually was able to start walking in the hallways again. But I’m dragging my IV pole, my oxygen tank, wearing a heart telemetry monitor, and taking very small, very calculated steps.

This is not how I imagined progression of cystic fibrosis.

I have felt things that I’ve never felt before. Physical symptoms. Fears. Abject uncertainty.

I am 45 years old and I have cystic fibrosis. According to all of the statistics, I really shouldn’t even be alive. Perhaps that’s what’s making this harder, having beat the odds for so long and feeling confident about that, and now feeling so vulnerable and fragile.

It breaks my heart that my husband has to see me go through this and feel helpless. It hurts that I am more of a patient then a partner at this point in our lives together. I hate that my niece is a nephews have to see me so weak. I hate that my mother cries because she feels guilty for passing on this gene to me. And now that my sisters have had to help bathe me because I could not do so myself.

But on the other hand, I am more grateful for every breath that I do have. I have felt love with my husband that carried me in the most desperate moments I’ve ever experienced. I have also opened up and let my family see me vulnerable and allow them to help me. I have also allowed myself to ask for prayers and positive thoughts online. Are used to be embarrassed and felt like I was throwing a pity party, but I realize that shared experiences are why God put us on the earth together. 

Don’t get me wrong, I am not thankful for cystic fibrosis in any way, shape, or form. But I am thankful to God for every joyful moment.

I am offering my struggle to God as my penance during this Lenten season. I usually don’t talk a lot about my faith, but I know that I am still here for a reason and that God is not done with me yet. I pray for strength, courage, grace, and to still think of others, even when I’m hurting. 

I apologize for the babbling nature of this post, but there’s just so much that I needed to share. I don’t know where this path will take me in the coming days and weeks and months. I have to be patient and take each moment as it happens.

Thank you for spending your time reading my story.