Vegan: The Good, The Bad and The Bad

Well friends, most of you have probably been wondering how my vegan journey has been going this past week. Let me tell you, it’s not.

I was SO excited to try going vegan! I read a post from a fellow CFer via the Cystic Fibrosis Foundation, which you can read here, and it was really encouraging. If you know anything about what I’ve been going through CF-wise recently, you know I am tired all time and my digestion is terrible. These two things are what going vegan was supposed to help with.

What is “vegan”, you may ask? Basically, it means no animal products. Some may call it a plant-based diet. No meat, cheese, milk or dairy of any kind, no eggs, fish…you get it. Of course, there are vegans who eat eggs or fish, these are called ovo-vegetarians and pescatarians, respectively.

Since I have CF, I have to get a lot of calories, fat and protein. Thankfully, I’m a dietitian and have a good idea of where to get these things from. Avocados, nuts, nut butters, quinoa and nutritional yeast, to name a few.

As a dietitian, I’m not a fan of any diets. None. I do think some of them can help you lose weight quickly, but it’s not healthy and most are not sustainable. I think you have foods that you eat usually, sometimes and rarely. So for me, going vegan felt like I was going on a diet. Which of course, I did not like.

However, I thought, even if it doesn’t work out, I can at least maybe feel like what it would be like to go on a diet, and I can relate more to my clients/patients.

I told Jason my plan, and he immediately asked, “Do I have to go vegan too?”

I am not a mean wife, so I told him he did not have to, he may just have to cook his own meat, which he agreed to.

So last Saturday evening, we made the menu for the week like we normally do and Sunday after church, we headed to the grocery store. ePA3MF7HTJSU1s3OfbDXyw

Y’all, I was SO pumped! We bought fruits, vegetables, peanut butter, nutritional yeast, chickpeas, tons of beans, and several other items. We only spent ~$124, which is typically what we spend anyway, give or take. We even went to Sprouts afterwards and I was able to find some vegan cheese, vegan “butter” and even…vegan chocolate pudding!! If you know me, you know I LOVE chocolate pudding, so this was exciting for me!

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**Spoiler Alert: vegan chocolate pudding is chunky and gross.

Now, I’ll take you day by day and tell you what I ate.

SUNDAY:

  • Breakfast: We had not gone to the grocery store at this point, so I had my usual Chocolate Carnation Instant Breakfast with 10 oz. Fairlife and 10 oz. Whole Cow’s Milk
  • Lunch: We decided to finish off our leftovers from the day before-chicken and veggies
  • Dinner: First Vegan meal!! Jason grilled corn on the cob and zucchini, and I heated up refried beans (vegan) and corn tortillas. We had tostadas and they were delicious! Even Jason really loved this meal.

MONDAY:

  • Breakfast: You probably saw my facebook/instagram post of my green smoothie that matched my scrubs…lol. It was made with spinach, almond milk, avocados and pineapple. It was GROSS. But I drank most of it to have something higher in fat to take my Symdeko medication with.

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  • Lunch: I was in the process of smashing some chickpeas to make vegan “tuna” salad, all the while trying not to puke, when my mom called. God bless her. She says, “Would you like some vegan Chick-fil-a?” I almost cried. “YES!” I cried. I threw the smashed chickpeas away. Didn’t even get a picture. So gross. I had nuggets and fries instead.

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  • Dinner: I’m honestly not sure why I thought this would be good. But I wanted to make something Jason could enjoy. So I made vegan broccoli and cheese soup. How? Cashews. We blended veggies and cashews and some other yummy items in a blender. Yea. Then stuck some broccoli in it and called it broccoli and cheese soup. GAG. Jason actually ate a whole bowl and called it “not bad”. I had one taste and I just couldn’t. Karli, my younger sister came over and she had cereal for dinner. We threw the rest out.

TUESDAY:

  • Breakfast: Jason and I tried a new smoothie that a friend had sent me. It contained almond milk, ice, 1 banana, 1/2 avocado, raw cacao, almond butter and flaxseed. It wasn’t terrible, but it wasn’t good either.
  • Lunch: I didn’t have time to cook anything, so I went to Chipotle and ordered a salad with sofritas- Chipotle’s tofu. It was okay. Would have been better with chicken lol.
  • Dinner: We had already planned to go to Alamo Drafthouse to see Ocean’s 8 for date night, and I was not about to be vegan here! We love their loaded fries and it was Taco Tuesday. So I participated without guilt!

WEDNESDAY:

  • Breakfast: No more smoothies. I stuck to an apple with peanut butter and it was fantastic!
  • Lunch: I didn’t have anything to take for lunch, and I was just about done with the vegan thing, so I had chicken tortilla soup from UMC’s cafe (it is SO good) and veggies.
  • Dinner: We were supposed to have black bean enchiladas…but I still wasn’t feeling vegan, so we decided to go to Timeless Cafe and use our Groupon (really good food if you haven’t been!) I got honey mustard pork chops and a zucchini/corn medley. Oh, and we got mozzarella sticks. YUM.

THURSDAY:

  • Breakfast: My trusty apple and peanut butter.
  • Lunch: Leftovers from Timeless Cafe and veggies and fruit!
  • Dinner: I had a work dinner at Funky Door and I ordered the Chardonnay Chicken. I had hummus with veggies and their delightful cheese sticks as an appetizer, plus chocolate fondue for dessert.

FRIDAY:

  • Breakfast: You already know. Apple and Peanut Butter.
  • Lunch: Jason made me a delicious salad with spinach, sunflower seeds, shredded cheese and chicken. I added grapes. Plus balsamic vinaigrette. I also munched on veggies and fruit.
  • Dinner: Jason and I went to Sonic around 4:30 because we really wanted a late afternoon snack. I had mozzarella sticks and we shared a large order of chili-cheese tater tots with jalepenos. I ended up taking a 3 hour nap and not having dinner. I did drink a tall glass of hot chocolate later in the evening to take my Symdeko with.

SATURDAY:

  • Breakfast: officially given up on being vegan.Went back to my regular carnation instant breakfast with Fairlife and cow’s milk.
  • Lunch: Jason made chicken, hashbrowns and veggies.
  • Dinner: Jason made steak, sweet potatoes and a large spinach salad.

 

So there you have it. Honestly, it may seem like I didn’t try very hard. I think I could have tried harder. But really, I love dairy products SO much and I rely on them for the majority of my calories, fat and protein. It was so hard to stay away from cheese and chocolate pudding. I do really like almond milk though.

How did I feel during the week?

I probably can’t give a good answer to this since there was not a single day that I went completely vegan. I did have regular bowel movements, but I’ve had regular BM’s for a few weeks before trying this. I still had gas and some bloating, but not much. The fatigue? Honestly, I think that’s mainly related to the sleep disorder my pulmonologist thinks I may have.

So as you can see, being vegan is not for me. I’m proud of myself for attempting it and going vegan for at least every breakfast and trying some new things. I’m really proud of Jason for unintentionally going vegan with me when I did. But it was not worth it for me.

I don’t crave vegan foods. Except for fruits and veggies, which is great, but they don’t have calories or protein! I noticed my appetite decreased and I didn’t eat as much this past week. I felt nauseas every day and even had headaches every day because I wasn’t eating enough.

Obviously, this wasn’t for me and I’m okay with that.

I’d also like to point out that I still tube fed every night, and my formula is not vegan. Vegan formulas are available, but the maker of these formulas have made another formula that I have tried and the fiber source did not like me. Lol.

I love cheese and dairy products and that’s okay. I really love chocolate pudding and I’m so glad to have that back in my life! And hey, if I decide to have some vegan meals in my life, cool! But as far as making it an every day, all the time thing? No thank you.

I’d like to take a moment to say thank you to everyone that was so supportive and encouraging. I got so many texts, comments and instagram messages and I was truly grateful and overwhelmed. Y’all are seriously so awesome!

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The One Where My GI Tract Hates Me

Hey friends! It’s that time where I update you on my most recent clinic appointment and let you know what’s been going on in my life recently.

Jason drove me to Fort Worth this past Wednesday for my first CF Clinic appointment of the year. I worked pretty much the whole way up while Jason drove and I annoyed him with my music choices 😉

We always eat lunch in the hospital cafeteria. Their pasta is literally so, so good. We didn’t have much time to eat lunch in the cafeteria because we had a late start that morning.

For the past month, since two days before I received my new G-J tube, I have had these really terrible stomach cramps. I get them randomly, but they can last anywhere from 10 minutes to hours on end. I can’t figure out if there is anything that triggers it, but with the cramps comes really bad diarrhea. Yea, it’s fantastic.

So of course, the night before we head to Fort Worth, the cramps hit. When I wake up the next morning, they are still there. I’m in terrible pain and can barely bring myself to get dressed. But I finally do, and before I knew it, I was throwing up. I have no idea why or what caused that, either. But after I was done, I felt better and the cramps were gone, so we left for Fort Worth with a puke bag in hand!

I managed to eat almost all of my lunch (I had to finish in the exam room) and was still feeling good. They took my weight, blood pressure and oxygen levels-all were great. My oxygen was 98% and my weight was up 2 pounds from 109 to 111. Woohoo!

My nurse, Candace, came in and asked how everything had been going. We went over current medications and I told her all about my stomach cramps. We also talked about a co-pay assistance program that I had been trying to get on for my Tobi Podhaler. This is a medication that I take for 28 days every other month to keep lung infections at bay. Well, I called my pharmacy mid-January to get it for February and the co-pay was a whopping $3,000. Yep. That’s THREE zero’s that you see. So I said “No, thank you” and told them I would wait to order until I could get the co-pay assistance. Well it finally went through 2 weeks later and I just got my Tobi today (Saturday)-thank you Candace for ensuring everything went through okay!

After speaking with Candace, I went and did my Pulmonary Lung Function Test (PFT). I put the nose clips on my nose and put the hand piece in my mouth. I breathed normal for a few breaths, took a deep breath, and blew out as hard as I could and for as long as I could. When I finally breathed in, I needed that air so bad. I coughed until my lungs hurt-what a work out! I then proceeded to do that two more times. Each time, I got 95%. My last PFT in November was 99%, so it had gone down some, but 95% is still pretty good!

While we waited for my dietitian to come in and speak with me, I made sure to cough up a small amount of mucus in my “mucus cup” so they could do a sputum culture and check for anything growing in my lungs we didn’t already know about.

Esther, my dietitian, came in and we talked all about my cramps, constipation and my issues with remembering my enzymes.

So, here’s some information that you may not have known previously about CF. If not, it will be a refresher 🙂

For a large percentage of us living with CF, our pancreatic ducts are blocked by mucus, so the pancreatic enzymes that are normally secreted in you when you eat, are not secreted in me. Therefore, I have a hard time digesting food and getting the nutrients I really need (one of the reasons why it’s hard for us to gain weight). So, we take synthetic enzymes with high-fat meals and snacks to help us get those nutrients and calories.

I will admit to anyone that I have always been terrible at taking my enzymes. ALWAYS. But I never seem to really have the issues that come with forgetting to take them. Symptoms include: greasy stools, gas, bloating, stomach cramps, etc. Sounds so fun, right? Well again, I don’t really have these issues, otherwise I would probably remember to take them!

So when I tell my dietitian that I’m having these issues, and I explain the enzyme thing, she assumes it’s because I don’t take the enzymes. But like I said, I’ve been terrible at taking enzymes for 24 years. We decide maybe I am using a “bad” bottle of enzymes. They could have been stored improperly before I got them, so she suggests switching to a new bottle. We also discuss ways to help me remember my enzymes. So far, it has worked! I keep baggies of enzymes on top of plates, bowls, and cups to help me remember and I haven’t missed any doses so far. So maybe we will see some weight gain as well!

We also discuss a new probiotic. I take culturelle on the reg to help regulate my GI tract. So I told her I feel like I’m wasting my money since it doesn’t seem to be helping. She agreed it could not be helping. So she gave me a sample of a new probiotic that has strains specifically for those of us living with CF! I’m excited to see if they help or not.

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We also discussed my water intake. I typically drink 30-60 ounces of water, plus about 30 ounces of other fluids during the day. She wants me drinking at least 80 ounces of total fluids during the day, so I am working on that! I already carry a water bottle around with me wherever I am, I am just being more conscious of drinking from it.

The last thing we discussed was my constipation issues that I have had for a few months now. If you haven’t noticed, GI issues are a common thing for those of us with CF. Like for reals. I have been taking a stool softener for a couple of months, and it seems it has just stopped working. I was afraid she would ask me to start drinking Miralax… and she did. I haven’t tried it yet, but I bought some today so we’ll see… yay.

Then, Dr. Burk and Cyndy, my NP came in. The first thing they asked me was whether or not I have had the flu. I told them I had not! They were excited to hear that and said that literally every other CF patient they have seen has had it. I’m keeping my fingers crossed I don’t get it!

Dr. Burk was not at my last appointment when I was having the major breathing issues, so we pulled up my CT scan and Dr. Burk showed it to Jason and I. It was so cool!!

I got to see the veins in my lungs and what the contrast had shown was going on. He noted a small node on my left lung, and says he’s not really concerned about it, but that we would take another look at it at my yearly appointment in April. He was very happy with my weight gain and my PFT, and he agreed with my dietitian’s recommendations, so he said, “Okay! See you in three months!”

Jason and I grabbed our stuff and headed to check out. The only Wednesday Dr. Burk was available in April was the 25th-the day after my 25th birthday on the 24th. Since it is my yearly appointment, Jason and I will have to drive down on my birthday on the 24th and spend the night since I will have my Oral Glucose Tolerance Test early the next morning. So we have decided we will make it a birthday trip and eat at some of my favorite places while we are there.

One thing we didn’t get a lot of answers on at my appointment was my recent increase in coughing at night. I wake myself up during the night coughing more often than not recently, and not only that, but it wakes Jason up as well.

**Side Note: If you don’t know my husband well, he is a grumpy person when he hasn’t had his 8 hours of sleep, so the coughing isn’t greaaat for our marriage, but he is taking it well 😛

Anyway, I have also been working out 2-4 times a week recently with Tone It Up, so I’m hoping this helps me get more mucus out since I cough more when I work out. Please be praying the coughing goes away soon so we can sleep through the night!

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For those who have asked, I have almost had my new GJ Tube a month, and everything is going really well! I have had zero reflux with the new tube and the new reflux medication I am on, and I am still hungry during the day. I did have a clogged tube a couple of weeks ago, so I am learning how to better care for my tube and, in turn, help my feeding tube patients better care for their tubes!

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Pulmonary Embolism? No Thank You.

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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.

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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)

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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).

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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!

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

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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.

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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:

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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!