(Fair warning, this is probably the longest blog post I've written to date.)
To refresh your memory, back in mid-August I posted a health update, explaining my appointments with a new Pulmonologist (for a second opinion) and an appointment with my pediatrician, for an attempt to help get me back on the road to feeling a little bit better than I did at the time.
Very shortly after I made that post, things quickly started to go downhill. We will just refer to this as the "start" of my most recent health downfall. After weeks, on what we call my "last resort" medications, not helping as well as they should of been and have in the past, I earned myself a weekend stay in the not-so-relaxing "Hotel" Nationwide Children's Hospital. Thankfully, I was able to be admitted to the floor, avoiding the ICU. My body just needed a weekend full of IV medications, because all of the additional oral medications that I was on, just didn't quite do their job. This admission didn't last too long and I (spoiler--) thought I bounced back pretty quickly.
The day after I got discharged, I had a bunch of appointments. One of those appointments was meeting with my Allergist/Immunologist. He wanted to repeat my Pulmonary Functioning Tests and the results were not what we were expecting. Normally after an admission, the inflammation markers inside of my lungs drastically decrease (which is what we want). This is all just due to the IV medications that I receive when I am inpatient, but still, we'll take it! However, this time my inflammation markers actually increased, to the highest they have ever been! At the same time, my lung function had increased a little, (considering it didn't have much room to decrease pre-admission) but no where near the range that I have in the past. I was feeling relatively well, as much as I could be considering I was still getting over my hospitalization. He was a little lost, and wanted to repeat the tests again in a week, and prolonged the taper of my "last resort" meds in hopes that it would help a little bit more.
Then, about two days after my appointment or three days after my discharge, I noticed that I began to, once again, feel the exact same symptoms that landed me in the hospital in the first place. Unfortunately, this was also the same time that my primary/main Pulmonologist was also leaving the country. So the care fell into the hands of my Immunologist/Allergist. (Along with my "secondary" Pulmonologists, which are what we call the Pulmonary doctors who take over my care "just in case" when my primary one can not, because I know every single Pulmonary doctor at my hospital and vise versa.) My Home Health Care nurse, who comes to my house every week, came that week and did not like the condition I was in, nor did she like the fact that, my very stubborn self, remained to stay at home, instead of making my way back to the hospital, as she felt I already should have done.
But, like I said, my "very stubborn self" felt like I didn't "need" to go back to the hospital yet. So instead of listening to the instructions of my nurse and the on-call Pulmonologist who was "waiting for me in the ER", I wanted to call my Allergist/Immunologist to inform him as to what was going on (though my other doctors already keep him in the loop), but mostly just to see if there wasn't absolutely anything else we could try doing, outpatient, before I go to the Emergency Room, because once I go there I am always admitted when it comes to my lungs. Fortunately, he did have one last trick in his back pocket to try but only if I promised that I would go straight to the hospital if I didn't significantly improve. [Unfortunately, this happened on a Friday, so I needed to make it over the weekend (when there are no doctors around, except on-calls) to Monday, when I would come for an appointment to see my Allergist/Immunologist and repeat the same tests.]
Over the course of the weekend, I didn't necessarily "improve" but my condition didn't worsen either. So I was able to make it to Monday, YAY! When the weekend came to a close and Monday rolled around, I went back to the Allergy/Immunology clinic to repeat my tests and wait for my doctor (whom I love dearly). He came in with my results, and they were heart-wrenching. My inflammation markers were shockingly, much higher than they were even from the week before. (when I broke my record, which is not a good record to break.) My lung function had significantly dropped AGAIN. My specialist was completely dumbfounded as to how fast my body was crashing. His biggest confusion was the amount/dosage of the medicines that I was taking that didn't even seem to phase my body. He said, if the medicines were indeed actually helping, despite my body still being very sick, was actually more worrisome to him, because he wouldn't even want to know how truly sick my body was before we increased and added the other medicines. After clinic, does anyone want to guess where I fell down a rabbit hole into? *Ding ding ding* The hospital, once again.
My second admission lasted about a week and half, but was a pretty productive one. Thankfully, I was able to be directly admitted so I was able to avoid the hassle of the germ-filled Emergency Department. The beginning of this admission I was pretty sick, and we had to reevaluate my condition, making sure I was "stable" enough to remain outside of the Intensive Care Unit. We started intense medicine regimens, throwing all the medications and treatments we could think of, to prevent my body from crashing any more. On day three, I noticed that my stomach (which we all know already has its issues) started acting up again. I ignored it as much as possible at first, because with certain treatments we had running, tend to upset my digestive tract. Usually, I wait it out for a few days and it slowly starts to come around again. However this time, it just seemed like my G.I tract took a nap, but just didn't want to wake up. My heart (which I am blessed to have that one organ ticking perfectly fine, having no cardiac conditions or issues) wanted to join the party, in which I call "The Malfunctioning Organ Party." This was a little worrisome, because I have had no prior history with my heart. I had several tests, and we repeated some of them, and no one could really seem to figure out why I was having "sinus brady" or bradycardia (abnormally slow heart rate). For several days I was woken up every hour (it seemed like) when I would actually fall asleep, by nurses, Cardiologists, Respiratory Therapists, etc... because of my heart rate (HR) and how scary low it would drop. Even when they made me wake up, stand up, or do something in my bed to make my heart rate jump up, it wouldn't. Bradycardia can sometimes be "normal" for some people, but it's definitely not my normal. It was actually opposite, because with my lung conditions I tend to run higher, or have tachycardia (abnormally high heart rate). We tried some medications in hope that those would increase my heart rate, but those failed as well.
Meanwhile, my lungs were slowly, but surely, improving a little each day. The medications were working and the treatments were improving my lungs, while making several other organs "join my party." We changed many medications while inpatient and started on a new medication regimen that I would continue outpatient. This new list of meds is one they have tried on several other patients whom have a disease called Cystic Fibrosis or CF but have shown significant and steady improvement in their lung function. So it was most definitely worth a shot to try, even if it is adding many more meds to my already extensive list.
(For those of you wondering, no, I do not have Cystic Fibrosis. However, both my brother and I have been tested numerous times for this disease, as their was very high suspicion we both had this disease when we were younger and growing up. The tests themselves actually came back positive, but the genetics did not. Therefore, thankfully, we did not have CF. But, when my health drastically declined five years ago, it all started with my lungs. I then developed secondary lung conditions, which are most commonly seen in patients who have Cystic Fibrosis. I also have other symptoms and conditions which are too, mostly only seen in those with CF. So as I do not have the genes, and am not "labeled" as a Cystic Fibrosis patient, my doctors specialize in CF and I am on certain CF treatments and medications.)
A few more days have passed in this most recent admission, and the concern for my digestive tract and heart now became bigger. My heart rate would become so worrisome that I had such a hard time sleeping, whether it was multiple high-pitched alarms going off, nurses and/or doctors shaking my arms and waking me up, or Cardiologists, residents, and other technicians, coming into my room in the most odd hours to observe me and perform the most random tests. (Or they seemed random to me because of the times they would do them.) As for my digestive tract, my pacemaker was still awake and on (we double checked), but my gut was just barely moving. I went about eight or nine days of no oral intake and was reaching the end of my "time-frame" when the several new motility medications we added, finally kicked in, allowing me to at least keep up with part of my nutrition via Ensure. (Yuck! So not my food or drink of choice, lol.)
After a week and half inpatient, I was finally able to come home. My lungs were in much better shape than when I had arrived and I was anxious to continue the new regimens at home to see if they would indeed have a promising outcome for my lungs as well. We all felt as if my digestive tract just needed more time, but as long as I kept up with a little Ensure and water, my motility meds would continue to work. As for my heart, it improved a little bit and wasn't as scary or worrisome. I had several new appointments scheduled but we felt good that I could see them outpatient instead of waiting around inpatient!
(It has been two weeks since I was discharged and as of right now- I have developed a few more concerning symptoms that will just have to wait and be a part of my next update, because I have many appointments over the next few weeks and hopefully I'll have more detailed information about all of that, next time. My lungs are still hanging in there, and we're waiting on some tests to come back for an additional lung disease, that they have a high suspicion for as well.)
As for my life outside of health related things, on the last weekend of September I was able to take a trip to Pittsburgh (which is about the halfway mark) between me and my best friend Charlotte. We were able to attend a Beads of Courage event! (I included the link, if you click on the words 'Beads of Courage' for those of you who don't know about that amazing program.) Such a memorable time with the both of us and our moms. We had a lot of laughter and tears, because of laughter! So thankful for the both of them! Can't wait until we can once again, get together again!!
During the first week of October, I was able to spend a couple days in Michigan where my aunt and uncle live. I love spending time up there and with the both of them, as since they live out of state, I don't see them as often as I'd like!
I included some pictures from my adventures, below: