-
Apart from managing PH, what’s another thing that you could use a break from?
We often find ourselves trying to do too much, pushing our bodies beyond limits and paying the price later. Balancing PH alone is challenging, not to mention other health conditions and the demands of life.
So, what would it be if you had the opportunity to take a break from something else besides PH? Let’s hear your thoughts! -
17 Replies
-
If I could take a break from something besides PH, it would be from heart failure and its symptoms. More specifically, from the daily things I have to do to stay out of active heart failure.
-
Hi @DeLois Tweedy, this is an excellent example of something many of us could enjoy a break from. I, too, have CHF and am grateful it is much better than when I was first diagnosed. But you’re right; it takes much work to keep heart failure at bay.
What are some examples of things you need a break from? For me, this would be fluid restriction and all three diuretics daily. I drink more than I eat, so staying within my limits is challenging some days.
I think chronic pain would be something I would LOVE to have a break from. It’s always there, no matter what day or my plans. Despite pain meds and other options, it never goes away. 💜
-
@DeLois Tweedy I was thinking back to when my son had PH and my first thought went to migraines. He was genetically prone to them to begin with but it was also a side effect of his many meds…so double wammie. He suffered with them so much!
But I didn’t think about heart failure. I think I tie that in with the PH but you are right. That is a big one! Cullen was on IV milrinone and when that was added to his IV Flolan it was hard!
So yes, I think Cullen would sympathize with your needing a break from Heart Failure! I wish so much for you that it could be a possibility.
-
Hi @Colleen, I bet using Flolan and adding the IV milrinone was challenging for Cullen at his young age. Did he have to carry two separate backpacks to school and everywhere he went? Or, was it that he could use one bag for both? You’ve probably shared before but I can’t remember anything lately!
Like @DeLois Tweedy , it would have been nice for Cullen to take a break from heart failure and yet another IV medication to worry about. My heart goes out to Cullen and you, too. I know you had to find creative ways to do the typical kid things.
I continue to be inspired bu you all. 💜
-
@jen-cueva he used one backpack. I got him a hydration backpack, took the bladder out and it held both pumps well along with ice packs for the flolan.
-
Aww, of course, @Colleen! You inspire me, my dear friend! I’m sure your creativity also plays and helped Cullen along this PH and transplant journey. He’s fortunate to have you as a mom.
I bet he will credit you for how resilant he continues to show he world he is! I text him last week, he must stay busy. He didn’t respond or maybe he got a new phone too and had no clue who I was, hehe.
Thanks for sharing this creative idea for cvarrying two IV meds at once!
-
@jen-cueva I’m sorry Cullen didn’t respond to your text. He didn’t mention hearing from you so tomorrow I will tell him to check his messages.
I can tell you he has been extremely busy these past few weeks. He has had 2 appointments at UPenn which he attended by himself. My parents are not taking care of themselves as they used to so he has been doing his best to help him, and he is in the middle of finals. Just found out he got a 100% on his big final assignment, which he thought he didn’t do well on. Always so proud of him.
-
Hi @Colleen, no worries; I figured Cullen has been busy adjusting. Like mom, I know he is probably stepping right in and caring for your parents the best he can. I am sorry to hear that your parents aren’t doing as much for themselves as they were. I know you are anxious to get to NJ, too. Any new updates on that?
I’m sure you are trying to get things taken care of with Aidan. How is he doing this week? How’s the pain? Are there any answers yet from those labs?
Also, kudos to Cullen on that 100%! I’m confident he will kick butt in his finals. I worry about him and hope he is taking care of himself, too.
Love, hugs, and prayers are coming your way, my lovely friend and FWW!😍
-
-
-
Right now I have had a bladder infection for over 2 weeks. I finished one course of antibiotics, with a bit of an improvement 2 days ago, but my earliest appt with my Dr. is Oct 12. I will try to go to a walk-in clinic tomorrow. If I hear running water I am in trouble…
-
Oh no, @Vicky Olsen, I’m sorry to hear you have a bladder infection. That can be so painful and frustrating, too. I’m grateful the first round of antibiotics helped a tad. But I do believe going into the walk-in clinic is a great idea. Maybe they can give you a stronger antibiotic or something to help you get through this stuggle.
My thoughts and prayers are with you. I realize how uncomrtable this can be to deal with. Please keep us posted.
-
@Vicky Olsen ack! A bladder infection is miserable! I’m so sorry you are dealing with that! I don’t know if I would wait until that appointment. A walk in clinic might be a good idea. Sounds like you need more time on antibiotics and without them I would hate for you to go back to how sick you were before the first round of them. Please let us know how you are doing.
-
-
I would like to take a break from the rain and dark. We have had a wetter than usual summer. Did have some nice days though and they were appreciated.
Got spoiled with all the summer sunlight. Now it’s dark when we get up……don’t like that. Only have around 11 hours of daylight now…….down from 19 in June. Yeah I know…..you guys down in America deal with that all the time. By the time we leave in December it will only be between 5 and 6 hours.
-
Yes, although we need the rain here, I feel like SD has been wetter than usual this past year. I also enjoy the longer summer days. Y’all have even more hours of daylight there than we do, @Roger Bliss.
It’s dark when I get up and dark usually before we finish dinner recently. Hope you get a break from the dark wet days for a bit.
The wet darker days are something I could use a break from, too. Thankful for the sunshine and being outside as I type this message.
-
@Roger Bliss rain and dark can wreak havoc on the emotions and the mind. I hear you! Doesn’t it also make you feel more tired than usual? That is what I struggle with most during the darkest days of winter.
-
-
Jen,
Yeah I know you guys are going through the same thing. You didn’t get spoiled on the light last summer. Some people up here have problems with the dark when it gets down to a few hours a day. We call it cabin fever. Some use full spectrum lighting which seems to help.
Colleen,
You can call me a whiner. People in the PNW not only have darkness year around and I hear some get webbed feet from all the rain. 😉
-
Hey, @Roger Bliss, I have to laugh at the cabin fever comment. I say that if we get rain a few days. I am spoiled and accustomed to being outside in the fresh air and sunlight. So, without a day of sun and light, I go nuts! I don’t blame those of you over there who don’t care for the few hours of light per day.
Many people use light theraphy to help boost their moods in the winter. Thanks for sharing , Roger. Take care.
-
@Roger Bliss, haha! My son lived in Louisiana for a year, and he said they get way more rain than Seattle. But luckily having lived in the PNW since he was 3 he was webbed feet ready! 🤣
-
Log in to reply.