WOW! I can't believe that it has been over 6 months since I last wrote anything! Time just seems to fly by but I suppose I didn't realize just how much time flew by me this time!
Boy oh boy! Where to even begin?!
Back sometime around November(ish), I started noticing that I just felt "off." I couldn't quite explain it but I just felt different than normal, Pulmonary wise. It wasn't anything emergent, but enough that I could notice. I still had all of my baseline symptoms but I had new and worsening symptoms, that just weren't "normal" for me. My specialists and my parents could tell just by looking at me, that I just didn't feel/look like myself. I had my Complex Care Clinic appointment around the exact same time, so at clinic we decided to go ahead and admit me to the hospital for a "tune-up" because my body's "timeline" was looking like I would crash right around the holidays, so we were trying to avoid that at all costs! I stayed for several days to receive all my IVs/meds/etc... and then was discharged home. Although I didn't notice much of a change in the way I felt during this admission, but the hope was that the meds would kick in as I recovered in my own bed!
A few weeks passed, the holidays passed, and at the beginning of the year, my best friend, Charlotte, came out to visit! We had a blast and we just love the time that we get to spend together, because all the miles between us make it hard to get together every weekend like we want!
She was here for a few days when I tried to push my symptoms off to the side, again, because I just wanted to enjoy the time while she was here because it wasn't going to be for long! However, after a few nights of no sleep, because of how sick I was, I knew I had to call my specialists and let them know what I had been trying to avoid. We all agreed that the previous admission had "tuned me up" for the holidays but not for as long as they should of. It had only been a few weeks but, once again, I ended myself back in my "jail cell" at "prison NCH." Oh how sad of a time it was when we realized Charlotte's visit would have to get cut short! It was so not how we envisioned our time together, but just like one of the reasons she's my BFF, she understood completely that no one has any control over these chronic illnesses. It was the saddest send off we ever want to have with each other, and many tears were shed. ♥
Yet another admission had come and gone and that "off" feeling that had sort of developed sometime around November was still lingering, and to be honest, was quickly making me feel worse and worse. Despite these admissions, despite the medications, despite everything, I still could not pin point my finger on what I thought was going on.
My shortness of breath, chest tightness, wheezing, cough/forcefulness of the cough/mucus, and lung pain were just getting significantly worse and worse. Having dealt with several lung conditions for so long, I'm blessed in the sense that I am able to take in the way I feel and still carry on with life and be able to do what I need to do (for the most part). But, I just could not catch a grasp on how to handle worsening of these things and the new symptoms added on.
We found out that my lungs themselves were actually pretty stable- as far as no drastic amount of new scar tissue inside my lungs, or increased amount of fungus, etc... that would explain why I felt so much worse. But, we also found out that my lung function has hit an official all-time-low record! (Bad, terrible, horrid, frightening, no good news!)
However, my diaphragm muscles and all the muscles surrounding my lungs, rib cage, etc... had shown a significant amount of weakness in such a short period of time. Every time I took a breath in or out, my lungs were trying so hard to expand, but since my muscles were barely moving, my lungs just had bare minimum amount of room to move. With each breath I took in, it felt like I wasn't getting any air (even though I obviously was getting some). I was ready to take another breath in, for some more air, before I even finished breathing the air out from the previous breath. I could physically feel the muscles shaking and straining just by trying to breathe in. So many times I pulled each one of the muscles in my back out, that controlled my breathing, and that just made each of the next breaths, that much harder.
This was an extremely hard and challenging time (and still is) but even to this day, I will always be amazed at how hard, something so simple as breathing can be, but just how much it's taken for granted.
Of course, with all this going on, the back and forth from the hospital, Emergency Department, clinics, and admissions just made these many months all run together and I never know what day (or month) it is anymore!
(So here are just a few random photos from all the random admissions/adventures we had during this time-
you might have to click on the photo itself to see it's entirety. I promise I didn't chop my head off like it seems!)
you might have to click on the photo itself to see it's entirety. I promise I didn't chop my head off like it seems!)
Back in January, I also started back in a program called Cardio-Pulmonary Rehab. It's a program in which patients usually attend for 6 weeks. During that time they go 3x a week and see many different therapies: Respiratory Therapy, Physical Therapy, Occupational Therapy, Therapeutic Recreation, Massage Therapy, a Nutritionist/Dietician, and a Psychologist. I have participated in this program, I think, 4 times before. With all my medical conditions (most importantly my lung conditions) going to any program for therapies isn't an easy task. My lungs/heart must constantly be monitored which many places don't do!
After just one week in Pulm Rehab, I had landed in the hospital. I was forced to take a couple weeks off to give my lungs plenty of time to recuperate before going back. Unfortunately, that one admission gave us an insight to just how weak and sensitive my lungs were. This was going to be a lot harder than I thought!
About 5 weeks into Pulm Rehab I landed back in the hospital (one of the random admissions I've lost count of), go figure! What should have been the end of my program, was only the beginning. Once again, I was forced to take a little bit more time to recover post-hospitalization before I was cleared to get back into therapies. But once I was able too, I was right back in the gym (at the hospital of course) trying my darnedest to get stronger!
Unfortunately, the admissions and my health set me back further than I realized. All the progress that we had made those last several weeks were gone. Honestly, it's heart-wrenching and difficult to work so hard at trying to get stronger just to have one minor event set you back even further than where you were before. It's like that saying "one step forward, three steps back." Or in this case: one step forward, 15 steps back.
But there was nothing anyone could do about it. What's done was done and the only thing I could do was jump right back in and fight my way back. As of right now [June (5 months later)] I'm still in Pulm Rehab and the plan is that I still will be for a while! While some days I think I'm making progress, the next day comes along to remind me "not so much." But baby steps are still steps forward, and someday I'll come out on top!
With all that being said, you would think this would all be barely enough for one person to handle, right?! I mean you would think, I thought so too. But my body did not agree with us! Still with all of this stuff going on (plus so much more I could never begin to explain) my body wanted to play the "who's the sickest organ party?"
As we all know (or most I'm assuming) I already have an illness called 'Gastroparesis', or GP for short. In a gist: it's a digestive system disorder in which my stomach is paralyzed and struggles (sometimes unable) to digest food and then push it through to my intestines. I had a Gastric Neuro-Stimulator/Gastric Pacemaker surgically implanted in my belly back in 2014 that has helped me to control certain symptoms such as nausea and vomiting.
On a certain, random, day a few weeks ago I sat down to eat dinner with my parents. I got a few bites in, to a meal that I eat often because my stomach is able to tolerate it, when I noticed that I just immediately felt really full. (This is one of the symptoms of GP.) I stopped eating and just shrugged it off to "it must not be a good belly day" and went to bed. I woke up the next day and felt the same way, just more nauseous than normal and had no appetite whatsoever.
The next few days passed and I still was not able to tolerate any food, and just a little amount of liquids. However, the water I was able to drink and keep down just wasn't enough and I could tell that my "chronically-borderline-dehydrated" body had already well crossed that line. My home health care nurse (who comes every week) immediately noticed the difference in the way I looked before I even got the chance to explain. My eyes looked like they sunk into the back of my brain, my skin was dry, and my lips were so dry they had split open and were bleeding. My resting heart rate was through the roof and even something as little as standing up, made my heart rate into the 200s. Typical me, trying to avoid the un-avoidable, knew I should have sought help before then.
I checked myself into the Emergency Department with the hope that I could receive some IV fluids, and IV meds to help perk me up again and return back home. But I'm almost 100% convinced that there is this secret rule amongst the ER doctors that "Kaitlyn will never return home from the ER but will ALWAYS be admitted." Yes, I'm convinced.
As you can tell, I clearly did not get to return home afterwards but was admitted back into the hospital. And with what perfect timing did my body plan all this? The day before my 20th birthday! WOO! Happy Birthday to me!
After a few days of being admitted, still not able to tolerate any food, liquids, or any of my oral meds at this point, the decision was made that I would need to have an NJ (Nasojejunal) feeding tube placed. This is a tube that is placed up my nose, down my esophagus, bypassing my stomach, all the way into my small intestine. Through this tube I am fed a formula 24/7 that contains all of the nutrients that I'm not able to get on my own. This is also a great way of making sure I get back on all the medications I need to be on. I converted (all of the meds that could be) the medicines to liquid form in which I just measure out the amount and push them through my tube as well, ensuring that they're being absorbed, which malabsorbtion of my meds had always been a question in the back of everyone's mind.
I know many people have questions, and many have already asked things such as "How long do I have to have this feeding tube?", "When can I get it taken out?", & "Can I still eat or drink anything?" etc... etc... etc...
This feeding tube is a temporary thing. I got it placed because I went 10 days without nutrition. When my bloodwork came back all out of wack, there was no choice but to place it because I needed to be receiving some type of nutrition, some type of way. This way, I'm able to receive all the nutrition I need without having to eat and drink to get it all. The hope is that after some time, I will be able to return back to eating and get my nutrition orally. My doctors, my parents, nor do I, have any clue when that will happen. Only time will tell. I'm still able to eat and drink as I want too/can handle. It's encouraged that if I'm hungry to sip on some water/Gatorade, basically anything. I'm trying my best to work on eating again but this is far from an easy task. Drinking a sip of water on certain days can land me in a bed on my bathroom floor, where as some days I can manage a few bites of a sno-cone or maybe a lollipop. It's all baby steps right now and my biggest goal is still just working my way up on my feed goal, which is how many mLs of formula, through my tube, my body gets an hour.
I hope that sooner rather than later, I'm able to get back into more and more oral intake, and eventually pitch the tube. But for now, I'm grateful that something like this even exists because it's helped me to feel human again, because who knew not eating and drinking for 10 days made you feel more of a zombie than a human being! ☺
This post was a little long, but I tried to summarize a little bit of what's been going on over the past 6 months that I have been neglecting my blog for! Thank you to all those who called/texted/checked-in on me while I've been absent. I tried to just deal with most of it myself and it was a lot to take in, and I wasn't necessarily ready to share everything but here's a little bit! Everyday is still a war and sometimes it gets a little tiring and a little too exhausting but I have a great support system and it means the world! ♥