Pulmonary Embolism? No Thank You.

IMG_2879

Hello again friends and fam.

This is a bittersweet post. If you follow me on social media, you know I’ve been having some trouble lately.

Two weeks ago from exactly today,  I was in Amarillo for work. My co-worker and I were attending an open house for a Pediatric Hospice center. It was such a cute place! This hospice center was in what used to be a bed and breakfast. We were on the tour and I had just climbed a flight of stairs when I couldn’t catch my breath. I stood there, huffing and puffing, and eventually had to bring out my Xopenex inhaler to help me catch my breath.

I honestly didn’t think too much about it. However, over the weekend, my shortness of breath became worse and it turned into chest pain and chest tightness. So Monday morning, I called my doctor’s office and told my nurse what was going on.

It wasn’t too long after that, my Nurse Practitioner, Cyndy called me and wanted me to start doing my treatments twice a day instead of once a day (which I had already started doing over the weekend). Wednesday (the day before Thanksgiving), she called back and asked if I had started on Spiriva, a bronchodilator that can help reduce flare-up symptoms. I said I had not. Apparently, they forgot to tell me they had called it in to my pharmacy. Haha, oops! So I picked it up and started it that day.

I gave Spiriva a few days to work, and when it didn’t, I texted my Nurse Prac and told her I wasn’t doing any better. My cough had increased, my breaths were shallow and it felt like someone was sitting on my chest. So, my NP called in a small dose of Prednisone, a steroid to help treat inflammation. We are always nervous for me to try new meds because I am SO sensitive to them. But, I was kind of excited to start the prednisone because I had noticed my appetite had decreased some and I knew steroids can cause weight gain and the munchies-all good things for me!

Sunday night, I was sitting on the couch doing my treatments. During my treatments, I felt like I had just run a marathon. I was breathing very fast and was unable to catch my breath for approximately 30 minutes. I became very concerned and knew that my NP had told me to go to the ER if it got worse. So, I called my mom in tears and told her what was going on. We decided I would not go to the ER; they would probably only give me a breathing treatment and I wouldn’t get any sleep there. Well, I ended up not getting any sleep anyway. Apparently, prednisone causes insomnia. Because I had received the steroid that afternoon and took it as soon as I got it, I was awake alllll night. It got better when I took the Prednisone in the morning 🙂

Monday, I had a dentist appointment for a cleaning and a filling. I walked in and my dental hygienist commented that I didn’t look like I was feeling good. I told her what had been going on, and she was great to inform my dentist that I was having trouble breathing. Before the filling, we checked my oxygen levels. They were hovering around 94%, which is still pretty normal, but for me, I am normally at 99 or 100%. My blood pressure and heart rate were high as well. All of this told me that my heart and lungs were working harder to get me the oxygen I was needing.

So, they put the nitrous mask on, and I do NOT like feeling out of it. Eventually, because I was laying down and was already having trouble breathing, it got too much for me and I started to hyperventilate some. Before he started the filling, my dentist took the nitrous off and gave me oxygen instead. This allowed me to calm down and bring my oxygen levels back up. It was not a fun experience.

I then let my NP know that I was still not doing well. We decided to wait until the next day (Tuesday) to see if I needed to come into clinic on Wednesday.

Well, Tuesday came around and I felt worse. So we decided it would be better for me to come into clinic and let them see me before the holidays.

**Side note: Jason and I bought a new car Tuesday night! I loved having my Toyota 4Runner, but we bought it when I was working at UMC every day. Since having my new job these last couple of months, I am in my car a lot more and have learned just how terrible gas mileage the 4Runner gets. So, we decided to trade it in for a car with better gas mileage. ENTER my new 2017 Nissan Murano! I LOVE it and am so grateful the Lord allowed us to get a car that will better fit me and my new job.

IMG_2876

Wednesday morning, my dad came and picked me up at 6:30 am. He got to drive my new car to Fort Worth (he said he really liked it). We arrived and ate lunch at the hospital cafeteria (I love their food). I then went for my chest x-ray. Afterwards, I went into my appointment.

My oxygen was 98%, but my heart rate and blood pressure were high again. My weight was 109.5 pounds, which was stable from when I was at clinic last month (THANK YOU TUBE FEEDING). Now, the next test really blew me away (quite literally, LOL). My lung function test was 99%. WHAT?! My last one in October was 98%. I couldn’t believe it. With all of the issues I had been having, I was sure it was going to be 20-30% lower. I started crying and my respiratory therapist had to calm me down. I told her what had been going on and how I had just been really nervous for my PFT.

I took a short nap while I waited for the doctor and my NP to come in. I was seeing Dr. Gilbey because Dr. Burk was not in the clinic that day. I had seen Dr. Gilbey before and I think he is a great doctor! So, when he had heard mine and Cyndy’s perspectives on what had been going on with me, we started talking about what to do and what could be causing it all.

Turns out my chest x-ray looked good, but he wanted me to get a contrast CT Angiogram done to check for blood clots (pulmonary embolism). All my symptoms lined up with this, so that was scary!

He also said it could be caused from aspiration (inhaling food into my lungs). I told him the issues I have with reflux and keeping my head of bed elevated when I tube feed at night (it is necessary to keep your head elevated at least 30 degrees to decrease the risk of aspiration). So, it could be possible that I refluxed and then aspirated on it and that caused my airways to be inflamed and caused the increased cough as well.

The third possible cause is the awesome Lubbock wind/weather. It’s Ginning season, so there could be an allergen that I inhaled that is also causing the symptoms. However, I’m not having any other allergy symptoms at all, so we didn’t really think this was the true cause.

So, I headed down to radiology to get the angiogram completed.

After registering, my dad and I were taken to a waiting room where I filled out some paperwork. A nurse came by to get me and we went to another room for him to place the IV where the contrast would go in.

Now, most of you probably know that I am an extremely hard stick when it comes to needles. So I let everyone know that and I make sure and tell them they are only allowed to poke me in my hands because there is nothing for them in my arms. Most of the time they try to argue with me and they want to look at my arms anyway. Hello, I’ve been doing this my whole life, I think I know best! So, I picked out a vein in my right hand and told the nurse he could use that one. He decided he would use a cool tool called VeinViewer that would allow us to see my veins! (pics below)

IMG_2883IMG_2882IMG_2881IMG_2880

He ended up using the vein I had originally picked out 🙂

He was good at his job though, because he got the IV with the first stick!

Then, my dad and I waited over an hour to actually go and do the test. We were brought into a room where this giant machine was (pic below).

IMG_2884

I laid down on the machine bed and they started flushing my IV with saline. IT. BURNED. So they called the nurse who had placed it back in and we took a few minutes to make sure the IV was working. They flushed over 30mls of saline through it and it had blood return, so we knew it was working. Eventually, the stinging went away and it was just a cold feeling.

Next, they laid me back down and the bed was moved to where my chest was in the machine so they could take pictures of the veins and check for blood clots. When they started the contrast, I just about jumped out of the machine. I screamed. My entire right arm was immediately in intense pain and I was crying and struggling even more to breathe. The nurse in the room yelled for them to stop the test and the contrast. They pulled the bed out and had me sit up so I could breathe better. They called in a radiologist to check my IV again. The nurse who had been watching the IV said that once the contrast went in, my hand had blanched and turned a completely different color. They had been infusing the contrast at 4mls/second, so it was decided that was too much for my venous system to handle and the rate was cut in half.

That made the test bearable and I made it through. By this time, it was about 4:45 and my clinic was closing. So we were told to stay in the radiology waiting room until we got the results. If it was positive for a pulmonary embolism, I would need to keep the IV in and be admitted. If it was negative, they could take the IV out and I could go home.

My dad and I waited 30-45 minutes for my Nurse Prac to call and tell me that I do NOT have a pulmonary embolism. The angiogram showed I have mild bronchiectasis, which is damage to the airways from CF. She expected to see this. It also showed I have atelectasis from mucus plugs, but this is normal for someone with CF. So the bottom line is, the angiogram came out normal for me.

So we think all of this is mainly caused from aspiration. THANKS A LOT REFLUX.

Dr. Gilbey recommended I switch from Ranitidine to Nexium to help with the reflux and to take Claritin or Zyrtec to help with symptoms in case the Lubbock weather is contributing at all.

So, my dad and I spent 6.5 hours at Cook’s to find all of this out. We got home at 11 pm last night.

I am so thankful I did not have to stay and be admitted, but man am I frustrated.

Writing this post this morning, I am still struggling to breathe. My NP called me to check on me this morning and thinks it will all go away with time. It probably will.

But please remember, I’ve already been struggling for two weeks. How much longer will I have to struggle to BREATHE? I have such a great care team in Fort Worth and I am so grateful for them. I just wish we could have found a quick fix.

Doing treatments three times a day did nothing for me, so I’m going back to my regular once-a-day regimen and I will see what happens. I’m going to pick up some Nexium today and I’m starting to taper off the Prednisone.

SO. Please, please continue to pray for me. I am feeling a little disheartened by all of this and that I’m back home with the same problems. Praying for answers and that all of these issues go away.

Thank you all for your support and encouragement. It means the world to me!

Advertisements

When Life isn’t Fair

Since I was little, I’ve always loved to write. My family can attest to that. Since I started this blog a few years ago, I’ve found healing when I write. Whether I write it all out and don’t post it, or if I’m journaling to God, or if I write and do post it, I always find healing. Today is no different.

We’ve all had those days where life just isn’t good to us. Where it’s hard to get out of bed in the morning, or you lay in bed crying your eyes out.

I’ve had a few of those days recently.

If you follow me on Facebook, you may have read a post I posted this past Saturday evening. I got a call from my mom that night telling me Christian Lincoln had passed away suddenly. I was heartbroken. I couldn’t breathe. You see, Christian had cystic fibrosis, like me. She had just gotten out of the hospital not long ago. She was my cyster.

Not only was she my cyster, but she was also my great cousin. We told everyone we were cousins, because what is a great cousin anyway? We weren’t close like you would think cousins would be. That’s due to us both having this same disease. As most of you probably know, people with CF can’t be around each other in order to keep the other safe from any bugs growing in their lugs. We’re contagious to each other, but not others. CF is an isolating disease.

When someone with the same deadly disease as you passes, it’s a feeling like none other.

Memories flooded me.

When I worked at UMC as a dietitian, there would be times I saw Christian in the hallway or the cafeteria from afar. We would wave and smile at each other, and move on. One time when she was in the hospital, I brought her chocolate cupcakes and had one of my fellow dietitians deliver them to her room while I waited outside. There were a few times when Christian was admitted to my floor. Of course, I couldn’t go and speak with her, but I had one of my interns or my fellow RD’s visit with her and make sure she was okay. We texted about her wedding plans and we texted when she was in the hospital.

Since we never hung out in person, I won’t physically miss her presence.

But, I’ll miss that someone to talk to. That someone who knows exactly what I go through because she went through it too. I’ll miss her positivity when I was in a negative state of mind.

At her celebration of life today, many people there talked about CF. There was a poem read about CF that hit home for me. I wish I could remember it so I could recite it here.

Anyway, the point is, when someone you know dies from CF, it’s really hard not to picture yourself in their shoes.

It’s hard not to see yourself and imagine that you’re next. It’s hard to realize that you have the same disease that took another’s life.

But I can’t keep thinking like that. There is a positive side to this negative tragedy.

Christian went to heaven and I know she has perfect lungs and can finally breathe normally. Now I’m jealous! She got to meet Jesus and is not feeling anymore pain. Praise God!

So, when life isn’t fair, let’s remember that there’s always a silver lining. There’s always a positive outlook, you just have to find it.

{Fall}ing for My New Job, Lung Function and Life Expectancy

Autumn colored maple leaf

It’s that time again; time for the quarterly health update via my blog. Plus a few other things too 🙂

Before I go into my appointment details from last week, I’d like to tell you about what’s been going on in my life.

A  few months ago, a fellow registered dietitian in Lubbock contacted me about a job opportunity. This job opportunity turned into me traveling to Dallas for a job interview, and me accepting the job just a few days later. It was a whirl-wind!

There are many positive things about this new job, a few of which are better pay, more flexibility (allowing me to truly focus on my health) and just a better package overall. But, the best part is, I educate patients and caregivers of patients with feeding tubes on their supplies, formula and everything in-between. Part of my job is sales, which I never thought I would do as an RD. But, I’m selling Epic, the company I now work for. I sell something people need to live. I’m selling what I can do for the patients and their families and I LOVE it!

It has definitely been a transition going from working as a clinical dietitian to this new job, where my title is Clinical Liaison (CL). Basically, I am the in-between for patients and facilities. I meet with doctors, social workers, case managers, nurses, medical assistants, nurse pracs, etc and build relationships with them while telling them how I can help them.

Again, it has been a transition. I am the only CL in Lubbock and I cover Amarillo as well, so there is some traveling involved. My boss is also in Austin, so it’s been different trying to figure things out for myself. Thankfully, there are some really awesome people in the Lubbock and Amarillo Epic offices that have been very helpful!

I have had a few “set-ups”, where I have been able to educate patients and families about their feeding tubes, pumps and supplies. It is truly “my happy place”!

Now for details on my clinic appointment!

So, on our way to Fort Worth, I mentioned to Jason that I thought I had forgotten to tell anyone (besides work) that I had a doctor appointment that day and that I was going to Fort Worth….oops. I got in trouble for that one later!

But, the fact that really no one knew about it meant I hadn’t been worrying about it, which is great! And I was right not to.

I was up 2 pounds to 109 pounds, oxygen was 99% and my PFT (lung function test) was 96%! My last one in July was 97% and the one before that (my best one) was 98%, which shows my lung function is stable. Can I get an Amen?

The dietitian met with me and we discussed something I have been very excited about: Relizorb.

relizorb

Most of you know that with cystic fibrosis, we are unable to digest our food normally and therefore have to take enzymes with high fat meals/snacks. These enzyme capsules that I swallow contain various enzymes specific to breaking down carbohydrates, lipids (fat) and proteins. In Relizorb, it only contains the enzymes necessary to break down fat.

When I tube feed at night, I have to take enzymes before and after to help digest the nutrients in the formula, just like with any other food I eat. I typically take 4 enzymes before I tube feed, and 4 more when I wake up and the feeding is complete. Because Relizorb only contains lipase enzymes (enzymes needed to break down fat), I will still need to take 2 enzymes before and after tube feeding to help break down the other nutrients. Now, that really may not seem like a big deal, and honestly it’s not! I told my dietitian that I don’t need the Relizorb, but would like to try it just for the experience. She agreed, it’s a great idea!

This is how Relizorb looks when hooked up to the tube feeding line; personally, I will have 2 cartridges piggy-backing each other since I take in so much of my formula, TwoCal HN

I got a call just the other day from the Relizorb team and received more information on the cartridges. My CF care team is taking care of the paperwork so I can hopefully get the cartridges soon!

Experiencing new things with tube feeding is so helpful to not only myself, but I think it is helpful for others as well. Especially since I have this new job!

Well, that’s just about it on my life currently. Jason and I are having a blast in marriage, as always! And I am so grateful that the Lord has blessed me with this new job in a field I never thought I would be in, doing what I love, and being able to get more sleep and focus more on my health. I am blessed!

ALSO! If you haven’t already seen from my Instagram and Facebook post, the North American Cystic Fibrosis Conference just happened this past weekend. It was during this conference that they announced that they average life expectancy of someone living with CF has been increased from 37 years to 47 years old!!! I am beyond ecstatic! Most of you know that when I was diagnosed almost 24 years ago, my life expectancy was 18 years old. As you can tell, that number just continues to go up.

Growing up, I’ve always been told that I will most likely die from CF. It may not be any time soon, but I was told that would be the case as I got older. Now, with my lung function stable at a high number and the life expectancy going up, it’s really hard to see that happening. I can actually see a full life ahead of me. I can see myself growing old with Jason and watching our grandkids grow up as well. It’s something most CFer’s don’t get to do these days.

So, thank you to everyone who has donated to Team Jordan in the past years and donated to the CF Foundation through events, like the CF Taste Tour (see a picture below from this year’s event), etc. Because of donors like you, the CFF has the money to fund research for a cure. Because of you, I am confident we will find a cure! The Lord really is so, so good.

22496218_10214703137837313_2120113013677031580_o

Mom and I at the Lubbock Taste Tour!

It’s Not Just About the Lungs

Well friends and fam, here’s the blog post you’ve been waiting for! The past few weeks, I’ve been feeling more tired than usual and short of breath. For me, feeling short of breath is completely not normal. When the fatigue set in and was not alleviated with 7-7.5 hours of sleep every night (my normal amount of sleep), I knew something was wrong.

But that’s not all.

Right before I got married, about a year ago, I started having some bleeding, pain and straining with my bowel movements. Yeah, yeah, that’s gross. But it’s real life and honesty is my best policy.

Immediately, I called and spoke with my nurse who told me it was most likely internal hemorrhoids and recommended a stool softener. At the time, I was in a place where I was not about to add more medications to my daily regimen. I still am, for the most part. But, I chose not to take the stool softener and just drink more water/eat more fiber. The bleeding and pain went away within a couple of days.

Unfortunately, I had bleeding/pain/straining a few more times over the last several months. The third time, I added the stool softener and saw a dramatic improvement, especially since I had also been having constipation, which is very common in CF patients.

I’ve always tried to keep my bowel movements normal with drinking plenty of water/fluids during the day and consuming plenty of fiber with the fruits and vegetables I love so dearly. I’ve said this before, but sometimes, CF doesn’t care when you do things the right way. It has it’s own way of thinking.

Now that I’ve been on the stool softeners about a month and a half and have seen improvement, you can imagine my surprise when the bleeding, pain and straining returned with intensity this past weekend. So Monday morning, I called my nurse again and told her how I was feeling-tired, crappy, short of breath-and asked if there was something else I could do to help with GI symptoms. She let me know she would call me back after she talked to my team.

Later that afternoon, I got a call from my NP’s cell, which is never a good sign. I answered and she let me know they wanted me in clinic the day after next. I was shocked. It’s been a long time since I’ve been asked to come into clinic earlier than expected. I spent the next day mentally preparing to be hospitalized for IV antibiotics. Jason and I packed an overnight bag with everything we needed, anxious for the next day to come.

We headed to Fort Worth early Wednesday morning, ate lunch at the hospital, and went into my appointment not knowing what to expect.

My weight was down, but only by a pound, which surprised me. When I did my PFT, I blew a whopping 97%, down only 3% from my last PFT 2 months ago. I had expected a 10%, or even a 20% drop with how I had been breathing lately. My respiratory therapist commented that I “have something in there”, but it didn’t seem to slow me down.

It was definitely an awesome, God thing that my PFT was so good, but I have to admit, it really confused me. Why am I short of breath? Why I am tired?

When Dr. Burk came in, I relayed all of my symptoms to him. He wasn’t too concerned, looking at my numbers. He commented on how good my cough is. When we talked about my fatigue, he gently reminded me that living with CF is and can be exhausting.

Not what I wanted to hear.

I wanted a solution. I wanted to hear that he knew how to fix it.

That’s not what I got. What I got, was, rest.

Me? Rest?

I’m a go-getter. I work harder than anyone so that CF doesn’t stand in the way of me achieving my dreams. I thrive on being busy and getting things done. I love being productive!

I’m still learning though, that God created rest, and therefore, it is good.

“The Lord replied, ‘My presence will go with you, and I will give you rest.'” Exodus 33:14. Something I re-posted from Proverbs31 ministries the other day said, “Rest isn’t just what God did. Rest is who God is.” God rested, so shouldn’t I?

So, I’ve decided to start pursuing rest, intentionally. Unfortunately, this means more time at home and less time outside of the house. It means not overdoing it and putting my health, and not my social life, as my first priority. I’m excited to pursue rest, but I know it will be hard.

So now, back to the GI symptoms.

Since we were all sure I had internal hemorrhoids, my doctor made sure to check. Unfortunately, he didn’t find any. So then he made the recommendation that I see my gastroenterologist about getting a colonoscopy. He said the bleeding could be coming from a polyp in my colon, or from a rectal fissure tear. He isn’t sure exactly.

It also seems that my weight has hit a plateau. Of course, this has all been thanks to the problems with my possible gastroparesis (my stomach doesn’t empty like it’s supposed to). I haven’t been able to tolerate 3 cans of formula, only 2. My doctor asked if I could bolus feed to get more formula in a shorter amount of time. Unfortunately, I learned a long time ago that I throw up every time I bolus feed. So, Dr. Burk suggested I complete a gastric emptying study with Dr. Hancock, as well as the colonoscopy, to check whether or not I have gastroparesis for sure.

I was apprehensive about doing the study, because I’m unsure if it would change how I am currently treating my symptoms. But, Dr. Burk says that if the gastroparesis gets bad, I may need a tube in my jejunum (small intestine), rather than the one I have now in my stomach. This is because with J-tubes, the gastroparesis wouldn’t bother me, or how much formula I could tolerate, so I could gain weight, rather than be stable at where I am at. Sounds like a good thing, right?

I have a different opinion.

They don’t make buttons (like what I currently have) for J-tubes. Meaning, if I got the J-tube, it would stick out a good few inches. A literal tube would be hanging from my stomach.

Example A:

Related image

Nope. No thank you.

I’m truly not very self-conscious about my button. It’s close to my skin, it doesn’t bug me and it doesn’t restrict the type of clothes I wear.

But this? Not close to my skin. It hangs down and would definitely restrict the type of clothes I wear. I know I would be self-conscious about something like this.

So I’m going to visit Dr. Hancock tomorrow afternoon about the colonoscopy and gastric emptying study. I’m not sure what will happen after that. My mind can jump to all kinds of conclusions and assumptions. But, I always try to keep in mind that my God has me. He has a plan for me. If that means having a tube hanging from my stomach and wearing loose clothes, then so be it. If it means continuing to live my life, in spite of CF, I can do that.

So as you can see, CF isn’t always about the lungs. Sometimes, it’s about the GI system too, and this is something I am just starting to truly learn.

I’m grateful for your constant prayers and loving support!

 

Antibiotics: Hard Pills to Swallow

These last couple of weeks have been a doozy for the Robison household. A couple of weeks ago, I came home from work with a constant need to pee. I would pee, and five seconds later I felt like I needed to go again. I felt a lot of pressure in my lower abdomen as well. I didn’t have to google the symptoms to know what I was experiencing-my first urinary tract infection (UTI).

The next morning, I woke up with blood in my urine. It freaked me out, to say the least! As soon as the CF clinic was open, I called to let my nurse know. It wasn’t long before I had a urinary analysis scheduled the same day.

I had started taking over-the-counter Azo pills to help with the symptoms, so my pee turned bright orange. The next day, my nurse prac called to confirm the UTI and to talk about treatment options. See, I am very sensitive to medications, but especially antibiotics. When I have a CF exacerbation, I am normally placed on ciprofloxacin and bactrim. With UTI’s, cipro is a common antibiotic that is given. However, if taken too often, I can develop a resistance to it and it won’t work for me for anything. So our next step was Amoxocillin/Augmentin. My nurse prac was nervous because of my sensitivity, so she cautioned me to carry benadryl with me in case something happened.

I started the augmentin, and a couple of days go by before my nurse prac calls me again to tell me I am growing E. Coli in my urine. I was floored. She said it was very common, and was unsure on what caused the UTI. She asked how I was feeling-I told her I was back to my normal self and all of the symptoms were gone. She said that was good, but augmentin is actually not resistant or effective against E. Coli. But, because of my sensitivity to medications, she said we would keep me on the augmentin and just do a repeat urine analysis at the end of the two week antibiotic stent.

I have been on culturelle (a probiotic) for a few months now.  Unfortunately for me, even a week of augmentin is not good for my gut. This past Friday, I started having on and off stomach cramps. They weren’t too bad. By Monday night, I was on the floor, in tears, with severe cramps. I couldn’t move. They would let up for a few minutes, but then I was back on the floor, doubled over in pain. On top of that, I had been experiencing severe diarrhea all weekend. Thankfully, Jason was home to help me to bed. We considered the ER, but we knew it was the augmentin. I texted my nurse prac to let her know what was going on and see if she had any advice. She told me to stop the augmentin and to call Dr. Burk in the morning. She told me that the symptoms I was having were typical of augmentin.

Jason held me as I attempted to fall asleep.

The next morning, I woke up with cramps-not as bad as the ones from the night before, thankfully. I went to work with my heating pad and called and spoke with my nurse. She spoke with my doctor and told me to watch the symptoms since I stopped the augmentin.

The cramps have ceased, I’m just waiting for the diarrhea to do the same. Before the UTI, I had started having other issues with my digestive system that I also spoke to my nurse about. So today, I bought colace, a stool softener.

These may seem like small issues, and really, they are.

But when you have CF and know that these are common issues for other CFer’s, it’s a hard pill to swallow when you experience them for the first time. You see, I’m already on two other antibiotics chronically, meaning I don’t have a choice. One I’m taking to decrease the inflammation in my lungs, the other I take every other 28 days to help with lung function. So you can imagine what adding a third antibiotic does to me.

Sometimes, CF is a tiring disease to live with. I’m tired of worrying about what new meds will do to me. Sometimes, I’m just plain tired.

This past weekend, Jason was at a bachelor party, so I ran a lot of errands by myself that Jason and I normally do together. I came home from going to the grocery store and was wiped. I woke up the next day with sore EVERYTHING. It was quite comical, but again, a little hard to swallow.

Cystic fibrosis is a progressive disease. You can’t stop it. No matter if you do everything you’re supposed to. People die. Now, that’s a lot for just a blog post, I know. But it’s the truth. Unless a cure is found, CF will most likely take my life one day. Of course, I plan on doing everything I can to stop that, and that includes keeping a positive outlook and trusting in the Lord and His plan for my life.

P.S. I did my repeat urine analysis yesterday, so let’s hope the E. Coli is gone!

What It’s Like to Be the Partner of Someone Living with CF

IMG_1657If you aren’t already aware, May is Cystic Fibrosis Awareness month. Originally, I was going to have this post include 31 facts about CF (one for every day of the month). But, I decided I wanted to do something more unique, I just wasn’t sure what. Then, I came across a post where a fellow CFer did an interview with his girlfriend about how CF affected her, and thought this was a perfect idea!

I sat down with Jason a couple of nights ago and asked him 10 questions. It’s hard to get Jason to open up sometimes, so I did my best to encourage him with his answers when necessary 😉

So, here is Jason’s perspective on what it’s like to be a husband to someone living with CF. Enjoy, and happy CF awareness month!

  1. Do you recall when I told you about my Cystic Fibrosis? What was your reaction when I told you about having my CF?

I remember it was a long time ago. I’m pretty sure I didn’t have a big reaction because I didn’t know what it was. We were just friends at the time, but I remember asking you questions about it and you pretty much told me the basics.

 

  1. How does my having CF affect your life? How do you feel it affects decisions you make or feelings you have on a day-to-day basis?

Obviously it’s a big factor in my life because I need to provide for you. So I’m always thinking about insurance, jobs and making sure I encourage you to do treatments and eat more-stuff like that-but not be over-bearing. I have to think about certain aspects if we are going on a trip or things like that. Sometimes it makes me scared if you’re sick or not feeling good.

 

  1. What are the hardest and best parts about my having CF?

The hardest part is the fact that you will always have it and you will always have to take extra care of yourself and that it can hinder things you want to do. The best part about you having CF is all of the opportunities that you have received to help others and encourage them. That’s pretty cool.

 

  1. What is something you wish I would do differently in sharing my life with CF?

I don’t know. Ever since you got out of school, you’ve been really good about everything. You’re really good at taking your pills, doing your treatments and doing your tube feeds.

#winning

 

  1. What do you think is the most important part of being a partner of someone living with CF (or any chronic disease)?

You have to always be supportive and you have to trust that they know best, most of the time.

 

  1. How do you stay positive in facing life with me having CF? Are there tools or strategies you use?

I just remember that you’ve had this for a very long time, but that you’ve always had pretty good health, which is nice. Prayer and leaving it in God’s hands helps cope, as well as the fact that you take good care of yourself; I don’t have to worry too much.

  1. Am I the first person you knew with CF?

Yes, for sure.

 

  1. What advice would you give someone who is starting out in a relationship with someone with CF?

Don’t let it be a detriment to how you view the person. Talk with them about the illness and ask how it affects their life. Ask how they feel it limits them or doesn’t limit them, and make sure you understand the disease.

 

  1. How do you tell other people in your life about me having CF? What have people’s reactions been?

Whenever it comes up and I have to tell people, I normally just briefly explain it-the breathing issues and GI issues. Most people don’t have too big of a reaction because most people haven’t heard of it.

 

  1. What impact has my CF had on your life? Have you had to change your life at all to accommodate certain aspects of CF?

I take off of work to drive you to your doctor appointments and I have to make sure we are being diligent about saving money for health insurance, medications and clinic visits. A big thing is that we are thinking of adopting instead of having our own children.

 

After going through these questions with Jason, he made me realize just how much he truly cares for me and loves me. What a blessing to have this man for my husband!

IMG_1831

Peace Like a River

il_570xN.1063735674_nbx7A hymn that often comes to my mind is one that I write about often. But I never get tired of it! “It Is Well with My Soul” by Horatio G. Spafford is one of my favorites. Horatio was a very successful businessman in Chicago who has a story much like that of Job’s. His only son died right before a financial disaster. He then planned a sort of vacation for him, his wife and his four daughters in Europe. Plans changed when he had to stay in Chicago for a few days longer, so he sent his family ahead of him and was expected to follow a few days later. Unfortunately, the ship his family was on was struck by an English vessel and sank in 12 minutes. The Spafford daughters did not survive. Mrs. Spafford was able to send her husband a message letting him know that she was alive, but their daughters were not. Horatio wrote this memorable hymn on his way to meet his grieving wife.

“When peace, like a river, attendeth my way,

When sorrows like sea billows roll;

Whatever my lot, thou hast taught me to say,

It is well, it is well with my soul.”

I love this story. Horatio lost all of his children, and in the midst of grief and despair, he still chose to praise his Savior. This is the hope for my life; that no matter the situation or circumstance, I also choose to see it through the Lord’s eyes.

As I have matured and grown older, I feel I become better at this. Living with CF, it is hard to take any day I have for granted. I have learned to see living with this terminal illness as a blessing. Because I trust in the Lord and His plan for me, I feel peace a lot of the time.

Just this past week, I had my yearly appointment at Cook Children’s with my CF care team. Although I go to see them every three months, the yearly involves seeing more people, running more tests and just generally spending more time at the hospital. As you can imagine, this might be a time when my peace might falter. But honestly, I felt a lot of peace before the appointment.

Usually, Jason and I just make a day trip to Fort Worth. But I am required to do an oral glucose tolerance test (OGTT) at this yearly exam, so we spend the night the night before. The OGTT test is done to test for diabetes, or even just the risk of diabetes (pre-diabetes) and is done very early in the morning (mine was at 6:45 am) because you have to be fasting for it to be done correctly. They take your blood when you get there for that fasting blood glucose, you drink an orange drink that is 75 grams of carbohydrates, wait two hours, and then they take your blood again. It is joyous.

The past couple of years, I have learned what to do before tests like this to get my blood flowing so they can get blood in one stick and it not be an issue. So Jason and I woke up around 5:15 the morning of the appointment and I worked out in the hotel gym (Jason watched, haha) so my blood was pumping.

Once at the lab, the phlebotomist printed out all of the orders for each test they wanted done. She took a total of 9 vials of blood from me to check my vitamin levels, etc. I also did a urine analysis.

During that two hours of waiting for the second blood draw, I was able to take a nap. I was grateful for that little bit of rest!

The second blood draw was complete in just a few minutes, so Jason and I were then able to head back to the hotel for a late breakfast.

We ate lunch in the hospital cafeteria like normal. They have this amazing pasta dish that I get every time! Once done with lunch, we headed to my appointment. My weight was down a few pounds, but once I did my PFT (lung function test), things were looking up! I blew a whopping 100%! Normal PFT is 120%, and I haven’t had this high of a lung function in about 5 years. I was blown away (pun intended).

I met with Dr. Cox, an endocrinologist due to my thyroid levels being high at my last appointment. She had looked at blood work I had completed a week before, and determined that the first test was just “funky” and that I didn’t need to worry about hyper-/hypo-thyroidism. I was relieved!!

My nurse checked my blood sugar level, which they don’t normally do, and it was 57, which is pretty low! I was feeling shaky and a little dizzy, so it made sense I was low, but I wasn’t sure why since I had just consumed a lunch full of carbs about an hour before. They didn’t seem too concerned about it, so we went on with the appointment.

I met with my dietitian, who was concerned because of the weight loss. I had switched to the new Peptide-based Kate Farms formula and was unfortunately, having a LOT of GI issues-stomach cramps, diarrhea and the like. I was really upset about it, because Nutren 2.0 had given me a lot of reflux and nausea, and the Kate Farms formula was really helping with that. But, my dietitian and I determined it wasn’t worth it if I was losing the weight. So I am now on TwoCal HN, which is the equivalent of Nutren 2.0, it’s just made by a different company. So far, so good!

I wasn’t able to see Dr. Burk, so I met with another doctor, Dr. Gilbey, and my NP Cyndy. Jason and I had previously chosen to talk with them about taking me off of the antibiotic that I had been on the last 6 months, seeing as how it is expensive and easily causes GI issues. Dr. Gilbey and I agreed that I could trial being off of it, but that if things got worse, I would get back on it. Jason and I decided we could live with that.

I also requested a new portable vest! This is something that I had previously been looking into. My current vest is great and works fine, but I am required to be hooked up to it in one spot for twenty minutes. Now, this may not seem like a big deal; but to someone who has to do this every single day, plus other treatments and live a life, it’s a bigger deal than you may think. So, the new portable vest would run on batteries and would allow me more freedom while doing my treatments. I hope to get it this summer!

A few other people on the care team came to speak with me about making sure my medications were affordable, new research and trials I could participate in. Soon I was allowed to leave and go and do my chest x-ray. The x-ray took maybe 5 minutes, and then Jason and I were headed home.

Last week, my dietitian called to let me know my vitamin levels had come back and were actually high. She wondered if I had been eating a lot of foods rich in fat-soluble vitamins, and I told her I was. She decided I should take my multivitamin once a day instead of twice a day and we would check levels again at my next appointment. My nurse called later to let me know that my chest x-ray was normal, but that my OGTT was a little abnormal. My fasting glucose level was normal, but my two-hour glucose was high, which indicates an increased risk for diabetes. This is not something I am worried about though, as this has been the results of my previous OGTT’s over the past few years. I’ll always have an increased risk of diabetes while I have CF.

So now you know how my last appointment went. As you can see, I really had nothing to worry about, so I am so glad I trusted in the Lord and chose not to worry! I am learning to trust in the Lord and His timing with all things. I hope that it will always be well with my soul; no matter if I have peace, or if the sea billows are rolling.