What the H@!% is Happening to Me?
- Shonna L. Tropf
- Feb 5, 2018
- 22 min read
Well, here we go! I've been warning you that we'd get to this discussion at some point. I'm giving all of you with queasy tummies the chance to bow out now. Even though until recently I was extremely unaccustomed and very uncomfortable discussing bodily functions with those closest to me, or even my doctors for that matter, I will include a few graphic pictures as well, I will not hold anything back in this post. From the beginning I've told you that my purpose for this blog was to provide information and education. So therefore, I will speak openly and frankly about everything that I experienced within my body during this big remodeling process. It's not a pretty picture that I will be painting for you, but it's a necessary one in order to provide you with the reality of going through a major surgery such as a tracheobronchoplasty.
Oh, What the Body Can Do . . .
When I stop to think about when I really lost control of my body it goes much further back than the TBM. The day I moved into the beautiful apartment directly above my beautiful little shop in a gorgeous Colonial house located on Main Street in St. Charles, MO is the day I lost control of every aspect of my life. I lost control of my finances. I lost control of my emotional and psychological well-being. I lost control of my health and of my body right then and there and have never regained full control of any of it - yet.
Over the last five and a half years I have struggled to grab hold of my life and health again. To say it's been a give and take scenario almost diminishes the fight that's fully encompassed me during this time. Every single time I felt as though I was making gains and ever so slightly turning the fight in my favor, I would eventually get suckered punched and be sucked right back in to the fight of and for my life. The cycle of being given the tiniest taste of health and finally feeling good only to have it inexplicably yanked from me was more draining than I can properly relay to you. Upon moving to Colorado and acclimating to the environment here, I could go for weeks and really feel good, feel like I was making headway in this ferocious fight for my life and health. And then seemingly out of nowhere, I was once again losing this unfair fight and pulled right back into the ugly, nasty pit of illness and despair. I had no control of anything at that point and just had to hang on and keep fighting as hard as I possibly could. Nonetheless, as hard as I was fighting there were days I honestly didn't know what I was fighting for anymore or why I kept at it.
There's no doubt in my mind, in the minds of my family, or in the minds of my medical team that toxic mold exposure directly lead to my TBM diagnosis. In previous posts I've already briefly discussed what living in a house with black mold did to me and how horrifically ill I was, one day I will write that entire story for you, but for now I want to focus on the complete loss of control of my body that I experienced due to the big remodel I had to undergo because of the TBM, and what I've experienced through the healing process from the tracheobronchoplasty (TBP).
TBM took the last vestige of my control away in October of 2016, but as far as the big remodel was concerned, I guess I really lost control of my body when I started the check in process several hours before my procedure was scheduled to take place. The charge nurse whisked me back to the OR prep area and had me change into the oh so stylish, rather airy, baby blue, cotton gown, which by the way seriously needs to be redesigned if any of you want to take on that challenge! Once I was changed the nurse popped back in and struck up chit chatty conversation while taking all of my vitals, asking a million and one questions while proceeding to hook me up to a million and one wires. And just like that I was confined to the hospital bed until they came to wheel me back to the ER.
During this process there is a revolving door of nurses and doctors who come in; each of them asking their own million and one questions. Did I mention how many times I had to tell them my name and birthday? If that information wasn't firmly ingrained into my brain before, it certainly is now! :) There was actually some lag time in between doctors and nurses, especially at the beginning because my surgery time was pushed back due to the surgery prior to mine was running over. My family and I made good use of this time and did some special bonding. Here's the picture to prove how we put this special time to good use!
It wasn't too long after this picture was taken that the anesthesiologist returned and told me the OR was ready and gave me the "happy" meds. Not long after is when I literally lost all control of my body and memory. I remember him pulling the rails up, unplugging my wires from the wall, and beginning to roll me away from my family bonding time. I think mom was crying. I didn't make it past the length of the nurses station before blacking out. No idea what I said or did during the rest of the ride to the operating room or being wheeled into the OR. I do vaguely remember seeing Dr. Meguid and one of his colleagues off to the side chatting and then complete and utter darkness - lights out!
In a previous post I mentioned that upon awakening from the operation I was in just a tad bit of pain. Let's get real, it hurt like a mother f@&^$#*?#@!, bleapety, bleap, bleap, bleap. Searing, white hot pain ripped through the entire right side of my body. Any movement only intensified the pain that much more. I'm completely surprised that a few choice curse words did not fly out of my mouth at that moment, but as best I can remember all I said is, "It hurts, it hurts. Ow, it hurts." Repeatedly, with tears pooling in the corners of my eyes. Even though I had been given pain meds, had an epidural still attached to my upper back, and shown the magic pain button there was no control there. My mind and body had betrayed me yet again and totally succumbed to the pain that TBM and the big remodel had inflicted upon me.
At that point, I still had a catheter inserted, so I didn't have to worry about trying to get out of bed and make my way to the restroom. (Seeing as how I just can barely even bring myself to say the word bathroom should provide you with an indicator of how difficult it is for me to talk openly about such things as bodily functions!) I was supposed to have gotten up to walk around that night, but since my surgery was so late the nurses didn't make me get up until later the next morning, which was probably a good thing considering how many tubes I had coming out of me, how many wires were attached to me, and how completely out of it I was.
I had tubes and wires literally radiating in every direction from my body. This was the case for several days and it took two to three people to get me out of bed because of all those tubes and wires had to be moved around so that I could move around. I had to try to push myself up, mainly with only my left elbow because doing anything with my right side was virtually impossible due to the IV line and the shear pain it caused in my upper torso to put any pressure on that arm at all. Eventually I developed a "rug burn" on my elbow. For all of the pain I was in from the remodel, that little rug burn hurt almost as bad - no joke!
Getting back into bed was no easy feat either! I had to back up to the edge, and then the care providers would help lower me down and get me situated with as little disturbance to my right side as possible. Once they got me down into bed I would push myself, of course using that left arm and elbow onto the pillows. Sometimes, even though I wasn't comfortable, I would just stop and drop from the shear effort of just trying to get comfy. At times I had to seriously determine if getting out of bed was truly worth the struggle or if I could put it off for a while longer. Eventually as a few of the tubes were removed and I had a little more strength I figured out that crawling in to bed and then spinning around to get in to my resting position was way easier and far less painful than trying to scoot/push myself up.
I had a catheter, an epidural, four drainage tubes, oxygen, and electrodes either coming out of me or attached to me. For a day or two I even had three IV lines in me. The slideshow below shows you the first pictures taken not too long after I arrived in my private room from the ICU. You can see two large drainage tubes and the small tube which was connected to the JP bulb (This is the one that got to come home with me!) The red blotch that runs underneath my gown in the lower left corner of the picture is the first few inches of my incision - it goes a full 10" under my shoulder blade and curves around around it.
The next pictures in the series shows you a different angle, further around my back, of the tubes. The last picture shows you the rest of the incision as well as the epidural, which is on the left side of the screen and kinda of resembles smooshed egg shells. The last picture shows my very swollen hand after one of the IVs blew a vein. It actually only took a few hours for all of that leaked fluid to move out and the swelling to go down. . . So now that you see just a small portion of the tubes and wires, you can understand why it would take two or three people to maneuver me out of bed. We did it, though! Being up and about walking those laps around the 9th floor was mandatory. Ya know, I actually don't think I got any pictures of me being a speed racer around those halls; darn!
The larger tubes were drains for the entire area surrounding the incision, the rib removal site, my lungs, heart, and trachea/bronchi. The smaller tube that had the JP bulb connected to the end of it was drainage from my lung. The week I was in the hospital, especially the first four or five days after the remodel, it would fill up pretty quickly and and have to be measured and drained every time a nurse or care provider entered my room. They also paid close attention to the coloring and if any "abnormal" particles were found floating around in it. As long as it stayed clear, pinkish/orangish/reddish in color we were in the clear. If it turned milky or white, Houston, we had a problem. Praises to God, as the entire two and a half weeks that I wore the pesky little bulb the color and amount of drainage flowing from my longs remained right were it should have been with regards to how far away from the surgery I was.
I don't exactly remember which day the first round of tubes were removed. It was either Monday or Tuesday. I was beyond excited to be losing them, or at least as excited as I could be at the time. They had to postpone the removal a day or two from when the doctors originally wanted to remove them due to the amount of fluid still draining and something they looked for in the daily blood tests they ran. One of the tubes felt like it rested against the front rib just under my right breast. There was nothing I could do to make that more comfortable at all. Moving the wrong way or coughing would cause the tube to rube long that rib, sending searing pain throughout that area. Not fun. So, on the morning I was told I would be losing two tubes, it was good. This picture shows you one of the tubes and the drainage container that measured how much fluid was still draining.
They pulled two of these out of that morning, but guess which one they did not remove. Yepper, the one resting against that rib causing all that uncomfortableness and pain. Never the less, that tube was eventually removed a couple of days later, providing some much needed relief from the rib rub - I don't mean the tasty kind either.
Wake, Pee, Pooh, Sleep, Repeat . . .
I probably haven't lived the cycle of wake, pee, pooh, sleep, and repeat since I was a baby, baby. (BTW, my mom may disagree with this, but I was a baby, I don't remember it!) But, yepper, that's pretty much how I spent my week in the hospital, with addition of those laps and many tests. Most of my life, I never really paid too much attention to my everyday bodily functions. I went just like everyone else, albeit I've never been quite as regular as most, but regular for me. I guess. There were occasional bouts of constipations here and there, but then again that's not uncommon at all. I do have friends, though, who were as regular as clockwork and could almost count the seconds from the time they ate until they would "go." I do admit there were times I was quite envious of their prized ability, and I do mean prized, because most of them had no qualms with discussing their body's functioning and were often quite proud of the fact they the worked like clockwork.
Nonetheless, when these types of conversations would arise I would retreat into the background in order to avoid having to engage in the topic or I would physically retreat all together. I just could not bring myself to talk about "such things." I wasn't even raised in a household where we would not discuss bodily functions, it was just something I was never comfortable discussing. I even tried to hide the fact that I got my period for as long as I could - it lasted all of a day, but I tried. On rare occasions, I would inevitably be drawn into such conversations, but could still barely bring myself to say such things as poop, in fact I still to this day I prefer the more gentler term of pooh and I rarely say the word pee for that matter. This never got easier for me as I aged. As I sit here writing this blog about bodily functions, it's still not easy for me, but let's dive in!
During my week in the hospital my bodily functions became a major topic of discussion, for everyone, no matter how many people were in the room or how uncomfortable I was with it. Every morning I was asked if I was having any issue peeing as well as how or if other things were moving yet and if I was having any pain or irritation while doing either. Eventually, as the week progressed, I did actually become more comfortable with a group of complete strangers, aside from Dr. Meguid, standing around with their little notebooks, pen in hand, staring at me while interrogating me on my peeing and poohing.
As for peeing, I had to pee in a lovely, white, very cold, plastic "hat" in order for measurements to be taken every single time a care provided entered the room. Each measurement taking session always seemed to have some congratulatory remark attached to it. Hhhmmm, ssssooooooo not necessary, but you know any praise one can get these days is much appreciated.
The issue with the hat is that I while I was being so pumped of fluids, I still had a seemingly mouth full of cotton and felt like I was completely dehydrated. I drank, and I drank, and I drank. I drank Turvis after Turvis of ice water. Apple juice, grape juice, orange juice, Diet Sprite, tea, . . whatever I could get my hands on I drank. Do you see where this is going? I drank, therefore I peed and I peed and I peed. Sometimes the little white hat would overflow - inciting more positive reinforcement. Another issue with the hat is that the care providers did not always empty the hat, making the measurements incorrect any way. There were also a few times that said hat was full when I was eventually allowed to hobble into the restroom on my own and would have to wrestle with my balance, the rollie cart hold the monitors, the tubes and the wires, all while trying to empty the full hat all at once. I hated that hat. Needless to say, I did not keep said cold, hard, plastic hat as a memento of my hospital visit.
The questioning of the pooh situation, was perhaps the most foreign and downright uncomfortable for me to have to discuss openly - with strangers no less! Had I not been so hyped up on pain meds I could never had tolerated being asked about how things were flowing in front of a group of strangers. I would have just shrunk right into the bright white bedsheets, hoping no one would seem my bright red skin of embarrassment. However, I was a little more than loopy, so I actually didn't care. By Monday or Tuesday I still had not had a bowl movement, which became of the utmost importance to everyone taking care of me. I was pretty bloated, but again, other than the pain on my right side, I really wasn't feeling too much at all and honestly had not noticed that I had not gone - nor did I care that I had not gone.
That particular morning Dr. Meguid announced to me and everyone else in the room that morning that we were going to get this situation taken care of today. OK! An hour or two later my nurse for the day, did I mention that said nurse was a man, came in to deliver my suppository. He helped me get out of bed and asked if I needed instructions or help with inserting it. Uh, no . . . . actually, hell no! I'm pretty sure my face was several shades of deep, deep red, by then. I told him that I thought I was pretty sure I could handle it and was good by myself. I think he was relieved - I know I was relieved that he didn't insist on helping me! He told me that I would need to keep it in at least 10-15 minutes if I could because the longer it was in the better it worked. He handed me the little cup and discreetly slipped out of the room. Whew! I do remember feeling extremely relieved that he left.
Now, confession time. I had never had to use a suppository - ever - so I wasn't completely sure what he meant when he said I had to try to keep it in as long as possible and I sure as heck wasn't about to ask. However, it did not take long for me to figure out what he was talking about. It meant I had to do some serious bootie clinching if I was going to keep that little white filmy thing inside of me long enough for it to do the most good. Oi . . . . It worked. Everyone on my team was overjoyed and told me how great that was for me. Okie dokie then! Under normal circumstances I would have totally shrunk right into concrete walls trying to get away from their praises for this, but again looniness is good for somethings I guess.
The doctors and nurses continued to keep a very close watch on that situation and did everything they could to ensure that things continued to come out alright. They did not. You may or may not know that opioids are a major source of constipation. My intestines decided they REALLY wanted to hold onto everything I ingested as tightly as they could. I was already bloated and heavy from the surgery and TBM in general (weight gain is one of the symptoms), so adding in some serious constipation to the mix was exactly what I did not need, which by the way, lasted weeks after my hospital stay had concluded. I would go, or actually not go, for days and days. When I saw Dr. Meguid and his partner Katy for my first post-op I had not had a BM in over a week. They both were extremely pained for me; the looks on their faces said it all. I, on the other hand, was still high as a kite and really not feeling too much at all. My belly bothered me because it was so distended, not because I felt that much pain in that area of my body. The two of them said they were going to make sure I had enough stuff to counteract the Oxy. Boy did they ever!
They sent me home with five prescriptions to help with the constipation. Not even kidding! I had to take some or all of these medications over the next five or six weeks. As long as I was taking Oxy, even if it was just one dose at night, then at least one of these handy dandy little items was taken along with it and for the next several days. Even though I have not had to take an Oxy in quite some time, my system is still not back to normal - or at least what I knew my normal to be.
I told Dr. Meguid and Katy that for as much as you hear about opioid addiction in the media these days the one thing you do not hear about is how constipated those addicts are! I mean seriously, you never hear about that part of being addicted to this crap (that's my official term for it!). There must be a lot of constipated addicts walking around out there if my experience was anything to go by. Maybe if they warned more people about how bloated their tummies would be and how painful being that constipated is, then more people would proceed with caution when taking Oxy. Those were just my drug-addled thoughts at the time, but you never know, maybe I'm on to something with this. It might be worth a shot. It's some nasty stuff and when not taken as prescribed and not taken with the utmost of care it can lead one down the darkest of roads that, sadly, many never return from.
Since the big remodel, I have continued to struggle with being "normally" regular. I have to actually pay attention to the amount of time between each movement or before I know it it's been a week, or even two, and I am miserable. I'm not sure if others who have major surgeries such as this have experienced the same issue or not, but it's a pain in the rear - litterally!
Speaking of Oxy & Then Some . . .
I've been mentioning throughout the last three blogs the pain meds I was on during before, during, and after the tracheobronchoplasty. Those medications were such a large part of the procedure and healing process that they bare revisiting. In fact, on the very first meeting I had with Dr. Meguid he said one of the most important aspects of this procedure was the pain management. We had to keep ahead of it or it could become unbearable (he was so right on that aspect!).
While in the hospital I was on a pain drip. It was my best friend for a week. Every nine minutes I could hit that magic pain button and have a dose delivered directly in to my blood stream. I suppose for the first half of the week I did not hesitate to hit that little button as often as possible. There were times when I hit it way before the nine minutes were up. The darn machine would just menacingly beep at me, warning me to drop my hands and back away from the button! However, as the week progressed I did not have to hit the button nearly as much.
You all know I was allowed 10 milligrams of Oxycodone every four hours. In the middle of those four hours I rotated Tylenol and Ibuprofen. Most of the time I only took 5 milligrams of the Oxy, but would definitely take the full 10 if I needed it. I HATE Oxy and how it makes me feel detached from everything. It takes away what little precious control I had over my body and decimates it. Dr. Meguid and I had the discussion of why so many people became addicted to it. He said because not everyone was like us. Some people didn't want to be in control or be productive in their lives and actually liked the fact that that Oxy allowed them to lose all control. Nope. Not. For. Me!
Now for confession time number two. As much as I hated taking Oxy, I hated missing a dose even more, especially during those first few weeks. I didn't take very long past the time the dose was due for me to notice. If I ignored it and kept on doing whatever it was that I was, or was not, doing, I would end up in some serious pain. Pain so intense it would take me right back to the night I woke up from my TBP. After getting home I only forgot to take extra doses with me once when mom and I would venture out. I learn pretty darn quickly from my mistakes and try very hard not to make them again!
Previously I mentioned that after my stint trial I was sent home with 100 doses of of liquid Oxy. After this surgery I was sent home with 100 more Oxy pills. I was loaded up and ready to tackle any pain that was headed my way. I opted to take the liquid Oxy, which lasted most of the seven weeks I was off from work. The rest of the pills has slowly trickled down one by one during the last several month. At first I thought I thought it was pretty silly that I had been given so much, but as it turned out I used almost all of it during those first couple of months. I was grateful for those 200 doses of Oxy as they were more than enough to get me through the worst of the pain.
In addition to the Oxy, I was given Gabapentin to ease the nerve pain that resulted from the rib removal. I was taking 300 mg three times a day. This dosage continued for several weeks until we started weening me off of it several weeks later.
Like the Oxy, I could not miss a dose of this stuff. Missing a dose of this stuff was decidedly worse than missing the Oxo. The nerve pain was what caused the most intense pain of all - that dang rib again! The first time I missed a dose I was in tears within an hour due to such ferocious pain ripping through my side. I definitely remember what that pain felt like - there was no beautiful bouncing baby on the other side of that pain to make me forget it. From then on out I had spares with me at all times.
I've been trying to ween off of the Gabapentin. During my last appointment with Dr. Meguied he said I should be off of it as soon as possible. However, one of his assistance said I may need to be on it for nine months to a year. As I was weening off of it I did have a couple of more incidents of that ferocious pain roaring back in, which let me know my body was not ready to back off of it. My initial break from it was quickly followed by a nasty sinus infection that dropped into my chest and stirred up all kinds of coughing fits. I lasted all of two days free of it before I had to open up the bottle and pop a pill or three. I continued to have to take it for the next several months, Eventually, getting down to one pill a day. A week ago I ran out and did not want to refill the prescription of 540 pills, so I am trying to go without it.
However, as I am still troubled by a deep, chronic cough, which we are investigating at National Jewish, I am thinking I'm going to have to fill that silly prescription after all. Every time I cough I have double over, grab hold of my chest and right breast in order to reduce the intensely painful cough reverb making its way through my body. Even with that, the cough is extremely painful. Additionally, my right side, especially my sternum and breast, has become increasingly painful to touch. I'm beginning to think that Dr. Meguied, God love him, was a little optimistic on how long I would need to be a Gabapentin pill popper! At least it's not Oxy and one day it will fade . . .
BTW, the above picture was just part of my morning ritual for many weeks after coming home. In addition to the pictured meds, I had inhalers, nebulizer treatments, oxygen, as well breathing tools/exercises I had to do. Vitamins and supplements were not allowed prior to or just after the surgery for fear of adverse interactions with all of the other meds I was being given. Several of these meds had to be taken more than once a day. As a matter of fact, I still have to take quite a few of them and will most likely have to take them through the end of time.
Embracing the Scars. . .
Hmmmmm, the scars. Let's talk about the scars. There are so many of them, both mental and physical from TBM and the big remodel. As for the physical scars, the few people I've shown them to cannot believe how clean they are and what a great job the medical team did with stitching me up. Some have even commented that if I had to have scars as large as these, then at least they look great. At this point, I don't think so. If they were on your body, you may feel the same way.
I know I should embrace them in all of their puffy red glory simply for the fact that they represent a map to easy breathing street, or at least easier breathing street. Even nearly five months out from the big remodel I cannot view them in that manner. They are still extremely tender, puffy, and bright, bright purplish/red. When I accidentally rub my hand over one of them, whether it be to reach a niggle of an itch or apply lotion after a shower, I still quickly withdraw my hand and wince at the sharp pain that's concentrated in the red puffiness.
I know that I should be thankful to have them because so many people go undiagnosed or for one reason or another do not qualify for the tracheobronchoplasty. I am extremely grateful that I was a candidate for the TBP and that the healing process itself is going reasonably well (sort of), but at the moment I try as hard as I can to avoid them - touching or looking. I've never been completely comfortable with my body, so having a huge gash and several puncture wound scars marring my side and back hasn't exactly been a confidence booster. Or, perhaps I'm more vain that I ever considered myself! :) Or, maybe I still cannot wrap my mind around what a serious procedure this was and that I may never regain my true self. Whatever the reason may be, even as I know they exist and will always mar my pale, pale white skin, I will continue to keep them covered (aside from the pictures above taken a month or so after the TBP), protected not only from prying eyes of strangers who would not understand their placement on my body, but from my own eyes and that ever-weak and fragile ego of mine.
When it comes to the emotional scars, I've had lots of time to think about them. I think I've even developed some insight into what they may mean and how they may impact me. Some wounds are still forming, cutting quick and deep into my psyche. The scars from these wounds are fresh and raw with the horrific wounds barely healed over. Confession number four, some are not healed over in the least, but we'll get to that in a later blog post. The older, less noticeable scars are still very much in existence, but do not stand out as the fresh ones do. These are the trickiest scars of all, however. Just as I think they have fully healed and faded away, clearing my psyche to make room for even more wounds caused by other life events, they suddenly come whooshing back, flooding my psyche and wreaking all kinds of havoc with my emotions and frame of mind. Then there are the little, insignificant scars that exist, but I don't pay too much attention to them because they don't hurt like the other scars. I do have to remind myself that these pesky little scars can be pretty darn tricky as well if not properly tended to. These are the scars that amass over time, one by one. Each little scar leaving its mark while waiting on that next little scar to join it, eventually forming a large mass of scar tissue that may be the most damaging of all the scars. You see, as this huge lump of tissue develops over time it becomes hardened and corroded, making it that much more difficult to cut away in order to leave a fresh, untouched area of the psyche that so desperately needs a new start. .
As for the regaining of "my true self," I am slowly coming to terms with the fact that the life I was creating for myself here in my new home of Colorado may be gone forever or at least irrevocably changed forever. My next blog post will delve more deeply into the the mental impact of TBM and the big remodel. Hopefully it will be insightful and helpful to you as well as even more healing to me as my journey, not to mention my big remodel, continues. Hopefully the next post will come a little quicker than this one! Until then, thank you for taking the time to share in my journey. Take care and blessing to you all.
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