What's Going On . . .

Happy New Year and hello friends! It’s been a while - again - since my last post. I should be more reliable with these updates than I have been and will perhaps make that one of my New Year’s resolutions. . . perhaps! :) Let’s see since my last post some things have changed, some things have leveled off, and some things have remained the same. So let’s just dive right in, shall we?

My gastric bypass surgery was May 7, 2019. It’s been a smashing success! I’ve lost close to 42 pounds at the time of this writing - depending on the time of day and scales used to weigh myself. Aren’t doctor’s scales always heavier than ours at home?!?! I am now in the weight zone where I lived prior to becoming mold sick and then eventually developing TBM. I should continue to lose a little more weight over the next few months. We are guesstimating it to be another 10-15 pounds. The trick to that will be staying off of steroids as much as I can!!!! Since May I think I’ve had about 5 or 6 rounds of the wonder drug since May, so that might be more challenging than not.

Most of my clothes are too big - even my undies! I can pull most of my pants right off my body with no problem. I guess that could make going to the bathroom a little easier! ;) My mom offered to take my pants up when they come visit in February. However, it’s to the point with most of them that they are just too saggy all over for that. Never fear, though, she is a whiz with a sewing machine, so I’m sure she’ll be able to work her magic on a few pair at least. My bras are also too big. I’ve gone down a whole size and cup size. In all the years of gaining and losing weight, I’ve never fluctuated with my bra size - ever. Those puppies remained steadfast and in the way! I really have to say I don’t mind losing some sizage in the bustage. Any woman who has sizage in her bustage knows exactly what I‘m talking about. Sorry about that guys, but they are just in the way and annoying more than anything!

I can see the biggest difference in my face, which is where I tend to lose and gain weight quickest. I can actually see my cheek bones through the chubby cheeks. I’m sure my aunt Connie is delighted about that. She used to be relentless about squeezing my chubby cheeks when I was young. Oh, I had to cut my hair off a couple of months ago, so that's a pretty big difference as well. One of the possible side effects of the surgery and my body adjusting to processing food and nutrients differently was hair falling out. I prayed this would not happen, but it did. In an effort to curb the speed of said hair falling out I decided to go with a super short, sassy new do. I like it well enough for now. Even though I do get a ton of compliments on it, I plan on beginning the long and arduous process of letting it grow back out soon. God help me - it's such a painful process!

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blue pants

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As to how I feel, well, that’s the best part! I love the fact that I’ve lost the weight I’d gained over the last few years from being so sick on on the seemingly never ending merry go round ride of steroids. Even more, though, I love that I have no reflux! None. Nada. Zip. Zero. Hallelujah!!! Reflux sucks! I had both acid and non-acidic. I was on the highest doses of prescribed antacids and over the counter antacids and the acid reflux was still not completely controlled. The non-acidic reflux was the worst, though; silent and deadly. I very rarely ever felt as though I had “reflux”, but I had uncontrolled non-acidic reflux due to my sphincter not closing properly and a hiatal hernia. It was constant and it was massively destructive. I’m here to tell you that we don’t give nearly as much thought to reflux as we should. When left unchecked it will destroy your body, and life, from the inside out. I’ve said it before, but it bears saying again, if you have reflux that is constant and uncontrolled go to the doctor. They can fix you!

The gastric bypass surgery eliminated the GERD, which was causing me to aspirate some not so nice stuff down into my lungs, which in turn caused all kinds of nasty breathing and health issues. In August I told you (and my doctors) that while I was feeling better I was in no way satisfied with my progress or where I was at physically. I was beyond eager to get back to a

healthy, normal life. My medical team told me that perhaps I was being impatient and not giving myself time to recover; after all I had been breathing pure acid down into my lungs and had been VERY, VERY sick for a VERY long time. I begrudgingly I knew that what my medical team was telling me had some validity, I just wanted so badly to be better right then and there.

Well now, a few months later, I can admit that they were right - to a point - I was rushing my recovery. That should be no surprise to any of you. I tend to push/rush myself just a little. Overall, I am feeling SO much better today than prior to this last surgery. Nonetheless, I am still not where I want to be, but I'm learning to be happy where I am. I've lost ALL of the weight I'd gained since acquiring TBM and being caught in a revolving door of respiratory infection and steroid prescriptions upon respiratory infection and steroid prescriptions. The constant burning and tightness in my chest are gone. The constant shortness of breath is gone. The constant soar throat and inner ear aches are all but gone. The constant clearing of my throat and coughing are gone. I have actual color in my skin again. My voice is stronger and clearer than it's been in a very long time. Every day I regain a little more energy and mental clarity. It is incredible to be able to say, "I feel good today!" and actually mean it. 😃

I still have many issues where breathing is concerned and I always will thanks to TBM - the fabulous gift that will keep on giving for the rest of my life. However, the issues that I described above are no longer naggingly constant or keeping me from being able to live a good quality of life. So, speaking of TBM, what’s up with that? SIGH!!!!!

During that visit in August with my pulmonologist when I expressed such displeasure with my progress, Dr. Stepp recommended that I see an intervention pulmonologists as well as my surgeon, thinking it was time for a bronchoscopy to see how/if the TBM has progressed. In late November I finally saw Dr. Al-Zubaidi, an interventionist. My visit with Dr. A was both

good and not so good. I'll start with the good. He was awesome (and very easy on the eyes - made the not so good stuff a little easier to take!). He had thoroughly reviewed my entire case history and was amazed at how much I’ve gone through the last few years. "You've really been through the ringer." Why yes, yes, I have been. He asked me what I wanted from my visit and I explained that I've been frustrated with my recovery and feel like it's more or less leveled off. Yes, I feel better, but no, I'm no where near my old self - which I've been told all along that I would eventually be able to get back to her; or at least pretty darn close. I just wanted to know what we could do to stave off episodes of collapsing, acute bronchitis, viruses that linger for months, etc. I didn't want this to be my normal. He listened very intently and asked great questions. He was very kind, appropriately empathetic and very pragmatic/realistic - just what this doctor needed.

This is where it got very, very real and very, very hard to hear.

Folks I have tracheobronchomalacia - YAY ME!!! I am recollapsing, which we've known about for right at a year now. There is NOTHING else at this point that can be done to repair/fix it. Period. There are no real preventative measures to be taken to stop its progression or to stop these awful episodes from occurring; only ways to try to calm them and keep me comfortable while they last. Most of the things he suggested I do I already do, so he said do them more. Be proactive. Instead of nebulizing once or twice a day, nebulize three to four times a day (at about 10-20 minutes a pop). Instead of wearing my CPAP only at night or when I’m in full on respiratory distress, put it on and wear it as soon as my chest begins to feel tight or I experience shortness of breath (it’s not a portable machine). Do not miss doses of my Advair and Spireva. Use my rescue inhalers and oxygen as much as needed. Whatever it takes to make my breathing easier just do it. He even inquired as to why I do not have standing prescriptions for antibiotics and prednisone - uh, no thank you! My answer to that was because most of the crud I contract is viral and the antibiotics do nothing and steroids - well, they’re steroids and I want to stay off of them as much as possible.

He did say I should really start focusing on strengthening through cardio - like be fanatical about it. This will help my cardio system pick up some, but not all, of the slack when my respiratory system goes all amuck. He also said that he realized that telling me to do cardio was much easier than actually doing it, acknowledging that he had absolutely no idea what it felt like to try to breathe while doing cardio because he did not have a respiratory disease.

Thank God for this man’s candor and realness - I loved him!!!! Additionally, he said that for as severe of a case as I am, (remember I was at 99% collapse pretty much all the way down the trachea into the bronchi stems) that ANY improvement post tracheobronchoplasty is considered a success and that where I've been able to get to is pretty damn good. He then said I should NEVER have been promised a life remotely close to preTBM - ever. He then even admitted that they need to do a better job of preparing patients for living life with this glorious disease and not over promise what it could be. Aw man, music to my ears people!!! I’ve been saying this from the get go. I’m not pessimistic about my prognosis, in fact just opposite. However, I needed someone to be REAL with me and I so appreciated him. Dr. A was more real about what it is to live with TBM than ANY other doctor I’ve worked with. It’s not an easy disease. It brings with it a lot of very hard days and heartache. But there have been many beautiful things that have come from it as well, which will be the subject of my next blog.

After apologizing multiple times for not being able to offer me anything new and telling me things that he was sure I did not want to hear, he referred me back to my surgeon, saying he felt strongly that it was time for another bronchoscopy in order to see just how much more collapsing is going on and to what degree of collapse it is and that I should not let anyone other than Dr. Meguid touch me with a scope because they could end up doing more damage than good. My last CT showed over 80%, but the bronch only showed 40ish%. Dr. A felt that there's a good chance the collapse is really on the higher end now, but also reiterated that there's nothing else that can be done. He then stated, "You're way too young to be dealing with all of this." No shit Shirlock! But guess what, I am dealing/living with it and age has nothing to do with it! (I really hate when people say that to me!!!! It's as if they think being 10-15 years older will make TBM any easier to live with!)

I went home to process all Dr. A had said. I wasn’t sure how I should feel. I did know it was a relief for a doctor to be straight with me and to pull no punches. I am a very pragmatic, pull no punches, give me the good the bad and the ugly kinda gal. He was very positive in recognizing all I've been through and just how far I've come, but also very real about what the future holds for me. The main thing I can do with this information is to start letting go of the idea that I just need to keep waiting/being patient with myself, because I'm going to get better with time. The reality is that I will never again run into my old self, who I've been looking for around every corner for the last several years. She is gone for good. It's time to face the fact that this is my new normal. I just have to figure out how to truly live with this version of me and let go of all of those hopes and expectations I had of what was to come when I found my old self. I can now stop being upset with my body for not being where I want it to be. I can grant myself the grace that I so desperately need.

On New Year’s Eve I saw Dr. Meguid, surgeon extraordinaire. Our visit went much the same way as with Dr. A. He fervently wished he had better news for me, but strongly felt as though I’ve leveled off and that where I am now is my new baseline. He expressed that he truly wished we had been able to get me beyond this point, but even with correcting the reflux I’m still in the same place health-wise where I was a year ago when I saw him and that’s indicative that this is going to be my normal. I cried a lot. He cried a little. He did not feel as though there was a reason to do a bronchoscopy at this point, primarily due to the fact we already know I’m collapsing again and that I’m in such a bad exacerbation at the moment that the bronch would actually make my breathing worse. Did I not mention I’ve been sick for about 6 week now?

I have been in an exacerbation since the week before Thanksgiving that just will not let go! We all know this is nothing new for me, though. I visited the ER, where I was diagnosed with bronchitis and given antibiotics and a lot of steroids. I’ve since developed a nasty sinus infection and was treated with yet another round of antibiotics. Had I not already been going to National Jewish to see Dr. Meguid on New Year’s Eve, I would have ended up right back in the ER again - it was that bad. Nothing has worked and I am now thinking it’s feeling more and more like RSV, which you may or may not remember I had for nearly 5 months last year. So not fun! I asked him if he’d test for it, but he said they don’t really do that and it’s viral any way and nothing to do for it but wait it out. Gotta love the ol’ viral infections - I know they LOVE me!

Both Drs. A and M told me I should cherish the good days I have . . . I will let that dangle there with all that went unspoken.

The harsh, hard to hear, sad reality is that TBM is progressive and degenerative. From knowing my body so well, I know that there has been some progression and that there will continue to be progression; it’s inevitable. That does not mean I’m giving up or just going to curl up and wait for havoc to be wreaked from within. Giving up is not in my DNA. However, I do have to accept my body and myself where we are now and the fact that this is my new normal. Yet again, I can let go and grieve my old self and the life that was and was not to be. I can now look forward to the life that is and will be without being angry or continually frustrated at my body for not reaching the level of health it had prior to TBM (and mold, let not forget what got me here). Acceptance does not mean giving up. In fact, I think it means just the opposite. For me it means I am finally free to move forward and try to figure out how to live in the space I am now. I have many more thoughts on this subject so be looking for them in my next blot - it’s going to be a good one I think!

I’m learning to take things slower - well slow for me, any way! At the strongly worded advice from my medical team I given myself time to let my body heal and recover from being traumatized with one ailment after another or one major surgery after another over the last several years. I do continue to push myself, because that’s what I do - I know no other way to be - but I also allow myself time to rest. I’ve learned without the periods of rest the various illnesses and exacerbations are that much more worse and frequent. I’ve discovered there are a lot of really good shows/movies on Netflix and Amazon! :) I am working on the cardio stuff - slowly. As soon as this exacerbation calms I will seriously dive in. I miss hiking something terrible and need to get out there in those mountains soon.

I cannot put into words how grateful I am to everyone who's walked this journey with me. As always, thank you so much for all of your love and support. I know I don't see most you very often and many of you I've never met in person, but I feel your love and the countless prayers you've lifted up for me. They sustain me through this journey. I am truly grateful for all of you and for each and every breath I am blessed enough to take. Thank you for caring and being part of my journey. Blessings of love, grace and mercy to you all. 🙂🙏💜