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.
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)
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).
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!