New Territory…

I finally have a little bit of information to share with you in regard to our next steps!

First off, Monday was my appointment for the female issues I’ve been dealing with. And from my sarcastic post on Facebook the other day, you can probably gather that my appointment did not go well!

All of the treatment options they had me try, are not working! I have gotten a lot better at being patient with new doctors but this clinic I have no one specific doctor and simply see whoever is working that day. This was my third appointment and my third different doctor. It was very evident that they had not even looked at my chart because when they tried prescribing me something else, I reminded them I was on Plavix and questioned if this med would interact with it. He looked at me and asked “do you have medical issues?” So yeah, that’s when I began repeating in my head “respond with grace, respond with grace!”

I now have to go back to them in a month to do yet another ultrasound as well as to discuss surgery. They are concerned about doing this procedure due to my health problems, especially with my breathing issues because I would be put under. They plan to look into my situation further and assured me that they will have more answers for me the next time we meet.

But for now, I guess that whole situation is the least of my problems.

I heard from Dr. Thomas today and he first explained that he would like to do a bronchoscopy to get measurements and figure out just exactly how narrow my airways are. Due to them being my smaller airways, he is not sure if stents can even be placed so his plan is to dilate and try to open them up with ballooning to see if that relieves some of my issues. Then after getting measurements, they will try to find stents that are small enough to put in my airways…if that is an option.

I had been feeling better, to the point that I stopped using my nebulizer. And while my cough had let up, I know that doesn’t necessarily mean my situation is better!

And then just like that, this morning I had a ridiculous coughing spell, resulting in me getting sick and losing my voice…so needless to say I’m using the nebulizer and inhaler again😕😷

At this point, I say just put me under and line up the doctors! Thomas can do my airways, Rossen can do my heart and whoever can do the procedure for the other issues! 😁😜

I am waiting to hear back from Dr. Thomas in regard to some questions I had. He would also like to do the procedure on February 26th and apologized for it taking so long as he is in a different department so that’s the soonest he could see me. But, due to that being so close to Rare Disease Day, I have asked when the next available day would be to do this procedure as I do not want to miss this event! I also asked him just how many of my smaller airways are narrowed as he had reported to me that there are some “potential targets” he would like to try to open up by ballooning.

So enough with that…Tim hasn’t appreciated my humor with this so I will move on to bigger and more important things…RARE DISEASE DAY on February 29th at the State Capitol!!! 

I am attaching the link for you to sign up and attend! Scroll down to Iowa and sign up for the event at the State Capitol in Des Moines! We want the room to be packed so please consider coming to learn more about why this day is so special to us! And remember, I will be doing a brief little five minute speech as well😳

And then also, anyone who has read my book…please don’t forget to leave a review on Amazon!! More reviews the more advertisement Amazon gives us and with it being February, no better time than now to push any information that we can about this disease!! Here is the link for that as well 🙂

I know you all continue to pray for us and they sure will be appreciated for us now as we head in to the next few weeks! Thanks everyone and enjoy the upcoming weekend! 


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