Pretty crazy how many of you pay such close attention to what I write in my blog and just don’t scroll through to look at the pictures!!😜 Quite a few of you have messaged asking me about my follow up that I briefly mentioned in my last blog so figured I had better do a quick update!
I went in the other week for my routine pulmonary functioning tests as well as the six minute walk test….this time they had me use albuterol which I always enjoy…not really!
The results were bad…as bad as six months ago…but not worse…so consistently bad…which means that’s good for me!! Haha! I have had a tremendous about of chest pressure and pain, the sharp pain that shoots through the front of my chest to the underneath of my should blade. Shortness of breath and extreme fatigue have been challenging as well! I had also developed a nasty cough but thankfully it only lasted a few days and of course I used the excuse that maybe this is why I could have bombed my breathing tests, but my symptoms didn’t improve once I started feeling better.
So the doctor did have concerns of narrowing stents so I will see my heart doctor next month to reevaluate. But again, we’ve already decided that going in to open the pulmonary artery stents might not be worth the risk, especially since they narrowed so quickly after I first got them and then narrowed fairly quickly again after they tried opening them for a second time.
Orrrrr my symptoms could also be an indicator that my SVC stents might be closed again, which would be a bummer because they just opened them up back in July. BUT at least that is still an option and would provide some relief.
I did tell my doctor about our vacation and the amount of hiking I had done which he seemed pretty impressed that I had survived…that’s my interpretation haha. I mentioned to him that I definitely had some intense symptoms going on during our mountain stay which led to a pretty good conversation regarding oxygen. I apparently should have had it when I went hiking especially because of how high we were! And if we go to Colorado I definitely need to have it with me and was encouraged to call him! Oops, who knew?!
This led in to discussing whether or not I should be using oxygen at home. The doctor went on to say that I am very active for someone who has this disease and while I still have plenty of symptoms…I’ve done pretty well at fighting them. He explained that in a way my body is like a football player in training…extremely hard, to drop their oxygen so that their bodies can build the stamina to function and play ball in that condition…something like that…any of you coaches or football players might understand but not sure how many followers I have of them! Haha!
Basically, even though I have pulmonary arterial hypertension and some minor damage to my heart, my body is still fighting and the damage has not gotten worse from the activity that I am doing. It was decided that as long as my heart stays stable, I will not be put on oxygen…specific prayer for me right there please!!
It sure is hard to make it through some of the simple activities during the day, with fatigue being one of the hardest challenges but I am doing it. And if I get put on oxygen now, my body won’t have to fight as hard and I will lose some strength that I am slowly gaining. So of course I want my body to be as strong as possible…which means I just keep pushing on!
Other than that, nothing new to report!! I get my eye injection Friday…blahh!!! I go to Iowa City the following week for a second opinion then cardiology a few weeks after that!!
Thank you guys for always checking up on me! You have no idea how much a random “thinking of you” “praying for you” or even just a ” hey, how’s it going today” can mean!! Have a great week!