The Good, The Bad, The Ugly
- Shonna L. Tropf
- Oct 29, 2018
- 11 min read
Hello there! It's me again. I do hope this finds you all well and happy. It's been a few weeks
since my last post regarding my TBPiversary. It's now fall, the leaves changed from green to brilliant oranges and yellows - and have now mostly blown off the trees, scattering every which way in the wind. Several people have been asking how I've been and what's up with the next surgery, so I want to provide a few updates to share with you. I'll try to keep this post a little shorter than the last few have been.
You're welcome! :)
So now for the update, including the good, the bad, and the ugly! For the most part I've been doing pretty well. I had yet another upper respiratory & sinus infection. We still haven't nailed down why I'm so prone to them. The pulmonary department now wants to blame them completely on reflux. The GI department said that reflux is not completely to blame. So I'm stuck coming down with these infections every 5-7ish weeks. It really has not mattered what I've tried doing, if there's a whiff of a virus going around it finds me rickety split - I'm just lucky like that!
However, in the last couple of weeks I've decided to try to take more control of this situation. Here's what I mean. Earlier in the year I was tested for immuno deficiency. My levels were pretty low, but not in the red, critical zone. National Jewish does not believe in giving an immune system booster shot if your levels are not in the critical zone. I have several friends in my TBM support groups who encouraged me to ask about getting at least one of these shots to help kick start my immune system because they'd had them and were helped tremendously. I also met an immunology nurse who said that as low as my levels were and as often as I am getting sick that I was definitely immuno deficient. She was enfatic that one's levels did not have to be in the critical level for one to be deficient. She said that I would most definitely benefit from having the shot.
I now have an appointment today (Monday) with a new GP and this situation will be our first topic of conversation. I will ask for a review of my history and immune system levels and ask for either the shot or to be sent to a specialist who can do more investigation as to why I get so sick so often. Hopefully she'll just agree to give me the shot and I can be on the way to having a stronger immune system! Wouldn't that be amazing?
I also a had small case of pneumonia just a few weeks ago. I did not agree with the diagnosis at first because I have some scarring in my lungs in what I thought was the same place that the NP said the pneumonia was located. I had gone to an urgent care because my GP could not get me in that day and saw a provider I'd never seen before. The scars have been misdiagnosed a couple of different times so I blew off her diagnosis. She gave me some antibiotics and cough pills, which would take care of both infections, so I should have been good to go.
About three days later I woke up and immediately, before even opening my eyes, knew I felt like death warmed over. I still had my oxygen on and was having a hard time catching my breath. I had been desaturating all throughout the week, which for me is not a regular occurrence in when I'm at home, so I knew this go round was different than my normal respiratory infections and that something wasn't quite right. I was wobbly and unsteady as soon as my feet hit the floor. (Ok, so that happens every morning, but on this day is was extreme unsteadiness!) After brushing my teeth and getting Lani settled for the morning I taught my Chinese students and then went straight back to bed as soon as my last class was finished. When I woke up for the second time that day, I called my pulmonologist's office at National Jewish. They wanted to see me, but said I did not sound good at all and if I could not make it to Denver, which is an hour away from Colorado Springs, then to head to the ER.
I knew right then that there was no way I could drive to Denver. I reached out to just about everyone I knew, but they were all busy. I was debating about cancelling my appointment and heading to the ER, which is only three weeks from my house so I could walk, when a friend from church texted me and said that she would take me. I had not even called her! Another friend from church, whom I had asked, called her and said I needed help and poof, there she was! I could not have been more grateful for her. Folks, those are the types of friends that I've made since moving to the Springs 3.5 years ago. I know I do not express my gratitude for all that all of them have done for me to them nearly enough, but I do so appreciate each and everyone of them more than they'll ever know.
Once the NP I was seeing examined me and reviewed the files from the urgent care, she actually confirmed that there was a small pneumonia. She said that my scars are in the middle lobe and the out of place spot was in my lower lobe. (My mistake! I knew that they were in the middle lobe, but felt so bad that my old brain wasn't working too well!) So there you have it - I had my first case of pneumonia. Yay me! I've dealt with some pretty serious coughs during the last few years, so the cough was nothing new nor nearly as severe as the TBM cough. What was annoying was how much and for how long it completely zapped me of energy. I had always heard that it takes quite a while to recover your energy after a bout of pneumonia and now I can testify that that is definitely the case. Good news, though, I'm feeling better now and praying that I do not hit 12 visits to the ER in one year before the end of October. I'm sitting pretty at 11 visits and am pretty sure I can make it!
For the last several months I've been going to respiratory rehab. Within a couple of weeks I
started to see and feel a difference in how I felt and was breathing. Now, 10 weeks in to actual therapy (I've missed a couple of weeks due to the being ill - that should not come as a surprise to any of you!) I go three days a week for 90 minutes. It's a lot, but so worth it. I am able to work out more at home and have resumed taking Lani on walks at least 4 days a week (We'll get back to 7 at some point!) I feel as though I have increased my lung capacity and do not get as short of breath as I used to. I've increased the amount of weights I use from 3 with my arms and 4 with my legs to 5 and 6 respectively. I can now do 60 steps on each leg, up from 20. Lastly, I can do over 2000 steps on the elliptical at varying speeds between 7 and 10 in 20 minutes. I still have two weeks left and think I'll be able to make further improvements as well. Once rehab is officially over, I will continue to go two days a week to work out on my own and with other respiratory patients. I'm so thankful to all of the therapists I've been able to work with and all of the other patients I've met there. It's a fun group we have, but more importantly it's a super encouraging group that supports each other and celebrates all the little things we've accomplished!
I also finally got my CPAP about a week and a half ago. I have to be honest, I didn't notice much of a difference in my energy level immediately as some of my friends had said I would. However, I am feeling a difference now. I do have more energy and am not dragging all day long now. Within a few days I started dropping weight. WOO HOO!!! Depending on the time of day I weigh myselfI've lost 5-7 pounds in the last 1.5 weeks. Considering I've gained between 25 and 30 pounds over the last two years I think that's a fantastic move in the right direction. I barely recognize body sometimes when I look in the mirror these days.
The dietician I met with a couple of weeks ago said she would wager that the bulk of the weight I gained was primarily due to the sleep apnea and not just the rounds and rounds of steroids I've endured, especially considering where I've put the weight on - right around my mid section. She informed me that she's worked with patients who've gained upwards of 100 pounds in a year (Can you even imagine?!?!) and have not changed anything in their eating or exercise habits. It's all the sleep apnea. She said that we are just now truly beginning to understand just how important and significant that sleep is for us. Because we didn't get much sleep or even food 50,000 years ago our bodies hoarded fat around our mid sections in order to have a reserve to draw from as well as to protect our internal organs. Not sleeping well due to apnea causes the body to automatically hoard fat in our mid sections; exactly where we do not need it! Folks, a lesson for you is to get your sleep! It's uber important for all aspects of our lives.
Now as for my upcoming surgery. . . The week before last I met with National Jewish's general surgeon to discuss my surgical options for correcting my GERD (aka, reflux). I truly liked Dr. Emily Speer a lot. She was actually prepared, having reviewed my case history and had a plan in place before entering the room. That was very impressive! She was very thorough and explained several different procedures and why they would or would not work for me. I, too, had done my research and already had a good idea as to the procedure I thought she would recommend and which one I absolutely did not want. She did recommend the procedure that I had anticipated, which by the way two of my other doctors there had already suggested would be the best one for me.
After I agreed to that procedure she then dropped the bombshell that she could not perform
that particular procedure due to my insurance - she did not work with that plan (sigh). WTH?!!? Figures. She did, however, ask me if I had a hospital preference so she could refer me there. I chose UC Health Denver, which is where the big remodel took place. She thought that was the best choice since the doctor that she did her fellowship under was there. She said there were three doctors in that practice and that all three were amazing. I actually trusted her opinion. Once our meeting was over and she made some additional notes she sent my file straight over to UC Health. I called, made my appointment, and went to a informational seminar on this past Thursday, which was a little overwhelming. I did like the doctor that I met there, so that's good! I go on November 2 to meet the other folks on the team, spend some serious time with the doctors and to formally start preparing for the next remodel I have to undergo. Man, I'm going to practically be a whole new person on the inside once this is completely!
You may be wondering what procedure we settled on. Due to several mitigating factors and
several additional gastro intestinal symptoms that I'm experiencing, it's a quite a bit bigger procedure than I had anticipated or wanted. I'm still processing having to endure yet another major surgery and am not quite ready to talk openly about it just yet. Once I fully reconcile what's about to happen to me I will of course write about it and give you as much information about the procedure and I learn. I hope you understand and allow me the time to completely comprehend and understand this next phase of my journey back to health.
I will share with you that I thought I was OK with the prospect of having this procedure before meeting with Dr. Speer, yet once our meeting had concluded I felt like a wrecking ball had taken aim at me and knocked me through a solid concrete wall. I was just sad; really, really sad. In that moment I was completely drained, void of all thought, emotion, energy and worst of all hope. Just about everyone on my medical team had been telling me what a magic bullet this procedure was going to be, fixing all of those continuing ailments that I have been inflicted with over the last year. They all said that once we got my reflux under control that I would be as good as new, I would feel SO much better, and that I'd be able to get back to living a normal life. Um, yeah, that may not actually be the case. Dr. Speer, bless her for this, was completely up front and said this is in no way was a magic bullet as much as she wished it was. She was very forthright about what it would and would not help. I so appreciated her for that. However, she did say that my quality of life would definitely be improved - I'll take it!!! As I've mentioned before, I had such high hopes about what the big remodel would do and how it would restore my health and life and we all know how that's turned out thus far. (Let me stress, though, that the TPB DID help my breathing and reduced the painful, body-wracking cough and I am SSSOOOO thankful for that!) I have been, and still am, cautiously optimistic about what this next procedure will do for me. I now know that I have been right to be so cautious. I'm not a negative person by any means. However, I am extremely pragmatic and need the good, the bad, and the ugly presented to me and that's exactly what Dr. Speer did.
Thankfully the deep sadness I experienced only lasted a few days. You all know that I truly believe you have to let yourself experience every single emotion that comes with life - the good, the bad, and the ugly. The key is to just not live in those sad, dark moments. Take your moments, even if they last a few days, and then pull yourself up and get back to counting all of your blessings and living with a grateful heart. My mom asked me why I was so sad when I knew this was coming. I'm not sure I explained myself very well, or that I even could explain it. I did not expect to experience such deep sadness about this. It really came out of the blue. All I could muster was that I am just tired. I'm tired of it all. This was definitely not they way I had planned my life or expected it to turn out. Nonetheless, it's the life that I have and even in those dark, sad days, I no longer take the breaths that are such precious gifts for granted. I look around at my lovely little cottage home, at my family, at my friends, at this spectacular place I am fortunate enough to live in, and know that I am blessed beyond measure. I KNOW that and I never want to lose sight of that fact. God knows what He's doing with my life. He knows what he's going to use me for once I do get tweaked a bit more. He, like my friends and family, has my back and is walking this journey with me. Can I get an amen? :)
I think that's about all I have for you now. I told you this one would be shorter! I'm still hanging in there and plugging through day by day and breath by precious breath. I encourage you all to stop for a minute and just take a deep breath, really filling your lungs to the tippy top and thank God that you are able to do so without effort or struggle. Easy breathing is such an amazing gift that we all too often take for granted - until we cannot do it without having to think about it or work at it. As always, thank you for your time and for traveling on this journey with me. Blessing and grace to all of you!
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