Tag: health update

First Trimester Recap- Week 1 to Week 13

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I consider myself one of the lucky ones looking back on my first trimester. Really, I don’t think my first trimester could have gone any smoother than it actually did. I believe everyone around me has lovingly been a bit surprised by that fact as well–I know I am not the only one. If I am being brutally honest, I thought those first 13 weeks would be a sh** show, and I had realistically prepared myself (and Peter) for the shower of preemptive baby poo coming our way. My initial thoughts: First trimester horror stories + CF = I am going down. Way to have any confidence in your abilities, Janeil. ☹

The reality was I was very aware there were women who spent the first three months with head hanging over the porcelain throne. Honestly, I thought with all the morning coughing I do, I would spend my fair share of time locked in the bathroom with my supreme gag reflex. Instead, I celebrated every time I puked because I knew that was just part of being wonderfully pregnant. I thought with already underlying chronic fatigue, the first trimester would wipe me out completely. Again, that wasn’t the case either. I felt an influx of energy and used that timely wisely. I worried about making it through the first trimester with no IV antibiotics to avoid exposing my developing babe to the harsh drugs. No harsh antibiotics here (minus my necessary daily ones)! I did it! I made it through the first trimester, and I did it with relative ease and healthy lungs!

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So, I consider myself extremely blessed because I know I fall into the minority group of “easy first trimesters”. Maybe the first trimester was so enjoyable because as Peter so eloquently put it, “You are used to feeling crappy”? Better yet, maybe it was all the prayers, support, and well wishes we received lifting me up to a healthier place? Either way, I truly felt great, hungry, a normal amount of tired, avoided IV antibiotics, and more excited with each passing week while baking that babe. Amen! My subsequent thoughts: I would do that 1,000 times over again!

Here’s a little more about my comfy and joyful first trimester being pregnant with cystic fibrosis:

Finding Out: I guess when you are so in-tuned with you body like I am, the benefit of having that connection is finding out you’re pregnant freakishly fast. At just 3 weeks 5 days pregnant, my body told me, “Get up out of bed and go take a pregnancy test because you are pregnant, girl!” And my body was right! Cue tears and hyperventilation.

I told Peter the next day and he was overcome by shock, just as I was. I think we both expected our TTC journey to play out differently and had our doubts we would ever be successful. The stats were not in our favor: about 1/3 of CFers need assisted reproductive technology to conceive and about another 1/3 only conceive after a year or more of trying. So to find out we made a human early on was very much our own little miracle! Overall, the first trimester felt long because we found out we were expecting so early, but it was incredibly joyful.

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OB Visits: Because my pregnancy is considered high-risk due to cystic fibrosis and also cystic fibrosis related diabetes, I am being monitored entirely by a Maternal Fetal Medicine (MFM) doctor, basically an OBGYN with extra training to handle complicated pregnancies. We decided a normal OBGYN just wouldn’t know what to do with me, and I am ok with that! The following things typically happen at my appointments: I usually get an ultrasound to make sure baby is growing correctly (it’s crazy to see the changes so far– the above ultrasound is 9w6d and 8w6d respectively), we go over my medications to make sure there have been no changes and everything is still safe to take, we go over my blood sugar numbers and adjust insulin as need, we discuss how my lungs are doing, and we discuss my weight gain. Starting at 20 weeks, I will get a growth scan at every appointment to continue to monitor baby’s growth. And from there, we see how things progress and adjust my care as needed!

CF Visits: I am also seeing my CF team on a more frequent basis to make sure I am the healthiest I can be during this time. As usual, I do a pulmonary function test (PFT) to determine how well my lungs are working, discuss my weight gain and calorie intake, adjust my medications, discuss my energy levels and other symptoms, and do a full physical exam. Surprisingly, my PFTs have gone up from 64% to 67% in the first trimester. YAY! Of course, everyone from my team comes in to see and touch my belly while asking all about my exciting pregnancy! I love my CF team so much and their constant support and detail to my care during this time is such an encouragement. I know this pregnancy feels like a huge victory for them as much as it is for me, and I hope I can make them proud by being a healthy mama!

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Morning Sickness: I had a touch of morning sickness up until about Week 8 but focused on keeping my stomach filled to help with the nausea and random vomiting, and it worked! After Week 8, the sickness was gone and there were only random moments of feeling queasy. I felt my morning sickness was very tolerable and ultimately, I knew I had the skills to deal with it (vomiting isn’t really a novel thing in CF).

Appetite and Cravings: Smoothies, fast food (Chick fil A, Taco Bell, etc), pizza, tacos, fresh fruit, cheese danish, different cereals, raw carrots, and brussels sprouts were some of my cravings. Basically, any time I overheard talk about food on the radio or while eavesdropping on a private conversation, I needed said food item ASAP. Pregnancy cravings are really just a step up from my already CF-induced food cravings. Poor Peter has spent a lot of time driving me to different food establishments, but he has always been a good sport about it!

Weight Gain: From December to Week 13, I gained around 8lb (104lb to 112lb), which was very desirable since I was struggling with poor weight gain during the holiday season. My goal is to eat an extra 300- 600 calories a day on top of my minimum ~3000 to 3500 calorie demand to gain between 28 to 40lb. Geez! I just keep telling myself, “Food is fight. Food is growth.” I believe I can get there slowly and surely, and so far I have! I think my healthy weight gain has been the most shocking aspect of this pregnancy so far. Eating appropriately and seeing such fantastic results on the scale is such a foreign concept to me in my normal CF life. As an result, I am so thankful I am putting on the weight we both need to stay healthy, and I am slowly learning to love my new maternity body that can’t fit into any of my previous clothing.

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Fatigue: My fatigue level from the beginning to Week 13 was very normal for me, even less burdensome than normal. There were days were I felt I had more energy than usual and was wondering when the impending fatigue would hit. There were also days were I napped and felt refreshed, and then days were I was tired. Overall, I personally feel CF-related fatigue is much more intense than pregnancy-related fatigue but that just might be me. Hopefully this energy will continue to transcend through the second trimester and beyond!

Other Pregnancy Weirdness: I had your usual cramping and twinges for the entirety of my first trimester. I now realize that all that stretching and pulling was needed because I started to show fairly quickly and developed a bump around Week 9 (and, I know it’s almost anatomically impossible at that point). People kept telling since I am petite, there’s nowhere to go but out. ☺ Who knows! I just went with the bump and embraced the congratulations and belly rubs from strangers.

With all the stretching, I experienced my very first round ligament pains pretty early on around Week 8 during hard coughs. I felt sharp pulling and tightening on the sides of my belly after coughing and then the pain would relax after a few seconds. My MFM agreed such strong coughing can definitely tighten all those muscles surrounding your belly causing sharp pains, and that I better get used to it. I am used to it at this point.

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CF Weirdness: The number one CF/pregnancy question I was asked after announcing we were expecting was, “Can you still use your Vest twice a day for 30 minutes for airway clearance?” The answer is yes! It won’t harm the baby a bit and is an especially important tool to keep my lungs as clear as possible. Eventually, I will have to unclip the bottom buckles to fit my giant belly and possibly have Peter “clap” me to target my lower lobes (form of airway clearance that looks like pounding with cupped hands) but for now, it’s all Vesting. Some women even say their babies are comforted from the shaking and noises of the Vest after delivery because they were so used to hearing it in the womb. ☺

I think the baby will also be used to my coughing, or at least I hope so. On my 12 Week ultrasound every time I coughed, the baby did a little squirm, floated up, and then back down from the force of the cough. It made me laugh and feel a bit bad for the disturbing poor thing. Eventually, baby will learn coughing is just a thing mama does, along with many other weird CF things.

That’s a wrap, people! Thank you for all your prayers and encouragement. I am happy to report how well babe and I are doing so far. Please let me know if you have any questions about this special pregnancy and I would be happy to answer!

Sending love and light,

J and Babe

Health Update: Physical Therapy, Orkambi & IVs

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This week was filled with appointments, decisions, and rearranging of medications.

On Monday, I graduated from physical therapy after eight weeks! Wahoo! How pumped am I to stop paying to workout early in the morning on my day off? The answer: So pumped. Really, PT was an excellent experience, and I am excited that it helped minimize the pain in my back from coughing and daily living. In PT, the therapists and I started with aligning and stretching my shoulder blades to achieve better posture by opening up the chest. I was taught different exercises to strengthen the shoulder, arm, and chest muscles that hold a lot of tension from coughing with the help of weights, bands, and foam rolls. Lastly, we worked on cough technique to better engage my abdominal muscles and keep my back straight, instead of contracting and rounding the shoulders on every cough. (CFers- bend forward at the hip instead of the middle back when coughing. You will feel like a new person!)

PT was also a humbling experience to say the least. In the midst of the coughing, sweating, and soreness, I recognized how simple movements and mindfulness of body placement could ultimately heal an aliment I never thought mendable. I am so thankful for the therapists’ expertise and advice. It felt wonderful to treat an issue with positive results and therefore, gain a sense of control in a body that sometimes feels wildly out of my control. Plus, there is nothing more humbling than a high school gentleman watching you do “pelvic tilts” on an exercise ball. Yes, it looked just as provocative and cringeworthy as it sounds, but I could only laugh at the ridiculousness. All in all, I highly recommend physical therapy to all my cysters and fibros out there and to anyone who is suffering from daily pain with little relief.

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On Wednesday, I headed to CF and CFRD (cystic fibrosis related diabetes) clinic with the wonderful company of my dear best friend and cousin, Cara. I told myself going in that I had no expectations as to what my PFT (pulmonary function test) or the plan of action would be. I have learned over the years to go into appointments with little expectation, that way I am able to focus on the positives of a bad appointment or celebrate the victories of a good appointment without feeling weighed down by disappointment. I knew I had been fighting a low-grade fever, increased cough, and fatigue (an on going problem for the past 5 months) but was unsure of what my doctor would say. My PFT was only down a bit- 65% and still one of the highest numbers I have seen in the last 12+ months. Those high numbers are very encouraging, and I still don’t believe this is reality when the respiratory therapist reads off the score as I catch my breath posttest.

The conversation between my doctor and I became increasingly complicated as we discussed my symptoms, life on Orkambi (a drug which targets the cause of CF), and the options available. In early December, I took myself off Orkambi for about a week (whoops) and realized how much better I felt without the drug. I had an inkling Orkambi was to blame for my level of fatigue, aches, tightness, and shortness of breath, even though the tests showed clinical improvements within my lungs. When Cara asked what I felt like, I told her, “Every morning, I wake up feeling like I lived another day in my sleep. There is no break in the fatigue.” Eventually, I was faced with a difficult decision: a) Stop Orkambi and risk losing lung function but feel better in the near future, or b) Continue Orkambi and keep my lung function but feel poorly as I do as a result of the side effects. What would you do if faced with this decision?

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Ultimately, I felt stressed making this choice. I didn’t want to disappoint Peter or my family who felt an immense sense of hope as a result of Orkambi. I didn’t want to be the patient that discontinues a drug thousands of CF patients wish they had an opportunity to be on. More importantly, I didn’t want to risk the possibility of never gaining that lung function back. However, quality of life has always been my top priority, and we agreed that if I am not able to enjoy the benefits of Orkambi after five months because my days are overwhelming burdened by fatigue and aches, what’s the point? So, for the time being, Orkambi will be removed from my list of treatments and I’ll go without.

I do want to say how very thankful I am for the opportunity to take Orkambi for the past five months. It really is a fascinating (and ridiculously expensive) drug that allowed me to cough less, use less insulin, and obtain better lung function. I can’t believe we are at this point in the advancement of CF research, and it is a time filled with so much hope. My doctor ensured me that numerous innovative drugs are coming down the research pipeline, and one of those drugs may be the perfect fit for me in the future. For now, I can enjoy the days while I wait and know that I have tried all the options available to me with a peaceful heart. I am thankful for such a great and supportive care team who continually reminds me that how I feel is more important than a number on a screen.

Now, the goal is to “reset” my body to determine what my daily baseline looks like without the effects of the drug and after the help of IV antibiotics. I definitely didn’t expect to be on IVs again this soon since I last had them in October/November. With the fever, cough, and fatigue, they are warranted. Truthfully, I am relieved, though. I can’t wait to see who I am without the weight of Orkambi and with the help of IVs to nudge me towards a version of myself I almost forgot existed. Goodbye, fatigue and grumpiness!

So, here we go again- no Orkambi, on IVs, and working to feel the very best I can.
I am snuggled in my bed, and 2016 is certainly starting out with a bang.

Health Update

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Last week, I went to CF clinic and followed through the motions that have become second nature: check-in, put mask on, sanitize hands, get vitals and sit down to do pulmonary function tests (or PFTs). I wasn’t expecting much since I have had two colds and 21 days of oral antibiotics in the last six weeks and had prepared myself mentally for a hospital stay and IV antibiotics. After my first blow and subsequent coughing attack, I was told I blew a whopping fev1 of 71%! I don’t think I will ever experience that level of shock again in my lifetime and I want to publically apologize to my PFT lady who I told to “shut up”. I WAS SHOCKED. I also apologize for telling you, “not to joke with me like that”. After I regained my composure, I asked her to look through my records to see the last time I blew in the 70s, and she responded that it was more than two years ago because those numbers weren’t even recorded on the card. SHOCKED. Then the mental light bulb flicked on and I knew this was the doing of Orkambi. To go from 54% in July to 71% in October could only be the work of the recently developed revolutionary drug that treats the cause of CF and not just the symptoms. I also believe it is my dedication to compliancy and the work of all those people praying for me on a daily basis- I feel your support, thank you. I walked out to the waiting room to tell my mom who had come along and she jumped up to hug me while the secretaries and nurses all clapped and cheered. It was a TV sitcom moment and I teared up a little, of course.

My first question as my doctor walked into the exam room was, “Why do I feel so sick if my lung function is so high?” It is true that the last few months have been difficult. I am constantly battling fatigue and for the first time, I am admitting that I have chronic pain everyday. I haven’t felt like myself lately, but a much more stale and weathered version. Most nights when Peter gets home from work, he finds the cat and I in bed resting and exhausted from the day endured, forgoing the preparation of dinner. I have essentially become non-functional in the evenings due to pain and fatigue and we planned to remedy that. Our action plan included a referral to physical therapy for chronic pain due to coughing, to stretch and strengthen the muscles in my back and chest. That referral alone gave me hope that I would feel better soon. We had further labs drawn to make sure we weren’t over looking an obvious issue that could explain the fatigue. Also, I received my flu shot (PSA: Get your flu shot! You are not only protecting yourself but people like me who would become life-threateningly sick from the flu. Just do it, pretty please. Ok, preaching over.). My doctor also suggested a hefty round of IV antibiotics to placate whatever bugs were sucking my energy. She agreed that I am more than qualified to start IVs at home without being admitted to the hospital for 48 hours. THANK YOU! I always thought that 48-hour policy my hospital instated was ridiculous and I am glad she decided to step outside the box for her patient.

And so, here I am a few days into treatment and feeling the effects of the drugs. My weekend consisted of sleeping in my own bed, receiving psychiatric therapy from my cat, using hot packs to ease pain and only stomaching Chick Fil A and Mac & Cheese. I can’t help but feel happy and hopeful though amongst the achiness and coughing. I never, ever thought I would see the 70s again and that just shows that I have been dreaming too small and my faith too little. Time to celebrate with another round of breathing treatments and limitless episodes of Friends!