Today I had a clinic visit. It was hard. I think it was the most emotionally exhausting appointment I have ever had. I decided to transition from my pediatric pulminologist to an adult pulminologist. There were many factors that went into my decision that I won't discuss here, but I thought long and hard about the transition before deciding to take the plunge. Today was my last appointment with Dr. Bob, who I have seen for over 20 years. There were many tears...mine, not his. Mostly from frustration...a few from sadness. I know I can't be fixed, but I at least want to be heard. I am at a turning point with my health and I am excited and scared about the next chapter all at the same time. That's all I have to say about that...
So we have a plan, sort of. I was wrong about culturing MAC. MAC is Mycobacterium Avium, which derived from birds. My Mycobacterium Abssessus is a whole different strain. It turns out it is the worst of the mycobacteriums. If to treat and how to treat is controversial. My new doctor, we'll call him Dr. Dazzle is very aggressive. To say that I like this approach is an understatement. After he introduced himself he said that together we were going to work on keeping my PFT's baseline for the next 50 years. We will not tolerate drops...not one bit!
That being said, we decided that we will move forward with kicking this mycobacterium's ass. First things first, we need a second positive culture result. I gave my lovely "sample" and will follow up with another appointment the Friday after next. Then we're really going to lay it all out there.
What I do know is that I was wrong about the treatment, in a bad way. It turns out that 2 of my 3 drug sensitivities are IV drugs. Therefore, what I imagined would be 12 months of easy peasy oral antibiotics, may be 12 months of IV antibiotics. It may be more like 3 or 6 months, since IV's are so much more potent than orals, but in any case, it's going to be a more difficult path. I wasn't at all prepared for that news. I wasn't prepared for the news of another hospital stay and PICC line. I wasn't prepared for the fact that I am likely going to have to take short-term disability from work for who knows how long. I wasn't prepared for the emotional transition process. I just feel ill-prepared.
I am, however, prepared to feel well again. I am prepared to give myself the rest and care that I need to heal, if that's possible. I am prepared to fight for every single percentage point of lung function. If for the next year I have to Vest, neb and infuse multiple times a day to win this battle, then that's what I'll do! And Dammit, I'm going to try to do it with a smile on my face! I'm sure that will be the hardest part... Fifty years from now, Dr. Dazzle and I, as a team, are prepared to say that I was able to beat the odds. Then, all of our hard work and effort will be rewarded with more hours, more days, more breaths...
14 comments:
First I am happy to hear this new doctor is so aggressive and ready to kick ass. That's how my current doctor is and my health is doing the best it has in some time. I still have my downs but they are a lot less worse than before I started seeing this new doctor.
Secondly just know that we are all here for you. You aren't on this difficult path alone! Keep fighting Cyster! You have got this!
Love ya!
Stacey,
My heart is hurting for you. I don't want to scare you, and I know that all cases aren't the same, AND I also know that treatment has come a long way since my transplant almost 9 years ago.
I had M. Abscessus pre-tx. I was on IV meds for it for 2 1/2 years until my transplant (I had a 3 week break during that time, but unfortunately the myco just came right back during that 3 week respite). It's definitely a tough bug, but like all opportunistic infections, it will play out differently in different people! And I'm praying that number 1.. it won't show up again in your culture, and number 2.. if it does, it can be treated and will not affect your lung function at all!!!
The very good and positive thing Stacey is that this myco is NOT like Cepacia, in that it only affects the lungs, and therefore will not be present after a lung transplant. I know that's something that is very far off for you, if at all, but letting you know that having this isn't a hopeless situation.
SO, so many hugs for you!!! You are very tough and positive, and that, more than anything will help you fight this! XOXO
I'm about in tears because I totally understand your frustration...been there, done that. I'm so happy that your new doc is more aggressive. I think that the adult docs have to be more aggressive. We're getting older and the bacteria/infections get harder to treat, especially like the one you have. You can do this!! You have a lot of people who will help you through it.
Much love!
Stacey, you're in my thoughts and prayers.
Although you did not ask for my opinion, I think the transition is a good move. Change is always hard, but I think this will be worth it! Let's talk about if there is any way I can help. Hang in there!
Love your attitude and I love your new doc. Too many of us get suckered into the mentality that dropping in lung function is "ok" and "just what happens". Hogwash! Sure, it may happen, but it will happen with me fighting tooth and nail to make sure it doesn't. I'm always here if you want to chat cyster :)
Stacey,
When you feel broken, I feel broken. You have been my mirror and when you hurt, I hurt. But we have the opportunity here to make this better. You will overcome this. I'm always here for support, if you need someone to talk too.
Colleen
stacey,
i am SO sorry to read about the myco -- i know how frustrating these rarer and more aggressive bugs can be, and it breaks my heart that you and your family have to go down this road. on the other hand, i'm so so so impressed (words can't even express) at the way you are gearing up to face this challenge. i think we all know that there are no guarantees with this disease, but when we go at our goals with our whole selves and never stop fighting, we at least give ourselves the best chance possible.
sending SO much love and light your way, cyster. we're all here for you 100%.
much love,
piper
I switched doctors in March. It was the hardest choice I ever made. But it was one I HAD to do. I moved 350 miles away from the doctor I had been seeing since I was 5...24 years. I definitely know it was a smart choice, but a couple of weeks ago when I was in the hospital it was the strangest thing not seeing him everyday. He was great about making his rounds daily, no matter the day or holiday. I miss seeing him and getting his advice. But I know I did the right thing.
Sometimes you just have to do what is best. And it sounds like the new guy is going to be amazing and take wonderful care of you, and really what more can you ask for right? :)
That long on IVs would drive me batty, but I'm glad you're making the choice to go for lung function. I would be making the same choice if I were in your shoes.
Are you willing to consider a port for being on IVs that long? It really helps lead a more normal life of showers and de-accessing for special occasions, but you ARE stuck with it afterward.
I am praying for your success!
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Colleen
First of all I am so sorry that you have this horrible bacteria in your lungs! I also want to let you know that I really like, "Dr. Dazzle's" approach, it sounds exactly like my personality! I wish my docs were more aggressive about my lung function, I feel like they don't take me drops in lung function seriously. Last time I was in clinic I had a 13% drop and they did not one single thing! I tell you this so you can be thankful for what you do have :)
I personally love your "kicking this mycobacterium's ass" approach! I'm so sorry for what it means though to you physically and emotionally. I'll pray for you and your sweet family, Stacey.
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