August 15, 2019 at 10:35 am #19126Brittany FosterKeymaster
I find myself getting caught up with side effects that are an unpleasant part of medications. It’s easier to focus on that especially when it feels like it takes so long sometimes to find the right dosage or medication that works for you.
For my PH I am treated with medications for my heart, lasix, bipap, and oxygen with activity. If I don’t do my treatments I can feel a difference negatively in my body. Something that my treatments help with are: being able to breathe better without feeling so constricted or tight in my chest, doing more activity during the day without feeling as much of a “crash” as I once did. I also feel a difference mentally because I am able to get better sleep and having better oxygen definitely helps my brain function without the mood swings from fatigue.
How has your treatment plan impacted your life in a positive way? What treatments are on you? How long did it take to feel the benefits of treatment?
August 15, 2019 at 12:51 pm #19135Colleen SteeleKeymaster
Great topic Brittany! In regard to both his PH and post-transplant treatments, just the thought of any new treatment would often make my son stressed because it was inevitable that there would be side effects of some sort. As he got older he handled the anxiety by extensively discussing the pro’s and con’s of the treatment with his doctor. He has always come around to agreeing with treatment because he trusted his doctor’s and knew that if he could get past the side effects, feeling better in the end would be worth the trouble.
One treatment that stands out in my mind as something he really didn’t want but it did end up helping him a great deal, was IV milrinone for heart failure. He was already on IV Flolan and adding milrinone meant adding a pic line and another pump to his backpack. He was really upset by this, but he braved the new treatment. It took week’s for him to feel a difference which caused more stress because he thought he went through with it for nothing. However, once it “kicked-in” he did feel a big difference and it definitely helped keep him stable until transplant.
Supplemental oxygen was something he tried for a long time to do without, but once he finally gave in to using it not just at bedtime, but during the day too, he acknowledged how much he really did need it.
Post-transplant, breathing treatments/nebulizers are not his favorite thing to do. It’s a pain to make time for them and it makes him cough, however, he knows it’s helping his new lungs and he does often feel refreshed after the treatments.
He’s had some aggressive treatments post transplant that were really hard to get through but it stopped the progression of rejection and if he has to do them again, he will.
I hope you continue to benefit from your treatments!
August 16, 2019 at 6:12 am #19149Brittany FosterKeymaster
He really has been through so much. I know that being compliant with treatments isn’t always easy. I’m sure talking about the pros and cons of everything with his doctor really helped a lot. I like to have these types of conversations and reminders of why I need something. For me, it’s about having that feeling of authority over my own body and feeling like I AM The one making the choice to take it or do the treatment. Knowing the benefits helps me, but sometimes just “knowing” something helps isn’t enough for me to want to do it. This is usually when I get a wake up call from my own body telling me “okay enough is enough, get it together !” I’m sure he has had these moments too. It’s only normal
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