Are any teens or young adults going to summer camps this year? What about vacations? What’s on your summer schedule before Fall rolls back around?

@jenc I happened upon this column recently and thought about re-sharing the topic too. Maybe it’s a sign that someone here could really benefit from these tips.

What I appreciate about Serena’s 7 Life Hacks is that she backs up the advice we have all likely heard before, with relatable experience and realistic options. She offers more of a… Read more

This is an older post but offers some helpful tips. I love the late Serena’s name for “birdbaths.” My late grandmother taught us it was called a “spit bath” hehe. I think Serena’s choice of titles sounds better. I have had these spit or birdbaths on many days. Have you found these partial bath life hacks?

Self-care is another important… Read more

Hey teens and young adults, school is winding down. What are your plans for the summer? Do we have any high school or college graduates to celebrate in the next few weeks?

We want to support you and hear how you’re doing as a teen and young adult with PH.

Thanks, @colleensteele, I know several young adults and teens with PH. I’ve suggested they join us, but not many want to join. I think at their age, they are busy with school, college, life, and being a teen.

But. I’ll continue to share with them. I’ve learned and continue to learn and be inspired by these teens and young adults with PH.… Read more

Just sending this reminder out that we welcome teens and young adults to the forums. I encourage you to share the forum link to young PHer’s you might know who could benefit from the support and information we share here.

Another important ti]opic as we deal with the possibility of other variants as some are preparing to head back to school. For those with school-age children, will they be attending in person as this year starts next month?

How do you feel about this? PLease share your thoughts on this important topic.

In my experience we all have something we can either relate to or learn from other PHer’s, no matter the age gap. Do you know a teen or young adult living with PH who could benefit from the PH forums? If so, send them a link and invite them to join us.

This has to be a huge stressor for those of y’all with kids in schools. This is affecting the public and private sectors. Let’s not forget those in college. Here in Texas, I heard that they are having a huge meeting later today to make some decisions within the Houston school district.

This must be overwhelming and stressful for everyone.… Read more

Hi,@colleensteele, your house always sounds fun-Hehe. I bet trying to stay quiet as your hubby is working, and the boys Are trying to do Zoom classes. I can picture it all now, your calm voice yelling out as a reminder to keep quiet.

I can imagine the auto classes are challenging to do online. Are they finished for the year? Or, are they… Read more

@jenc my boys are young adults in college and this last semester was completed on-line. My youngest has expressed frustration with effectively asking questions and getting helpful answers when not directly in the classroom. Some things aren’t as easy to teach and learn through the use of Zoom, especially in the automotive field.

The… Read more

I saw this link in NY Times this morning and wanted to share it here. Although the call is over, you can listen to it here. I can only imagine a teen with their already increased emotions during this lockdown.

Take a listen and share your thoughts. What tips can you share that have been helpful with your teen during the lockdown?

Too funny @brittany-foster, I love that! Fat and sassy is what I will be for sure. Of course, when I cannot get out and get things, I want everything except what I have at home. -Hehe

@colleensteele, did you make your treats? I like Brittany’s thinking; if you dip fruit into chocolate, it becomes healthy. I think all things are healthy… Read more

Colleen,

That sounds fun and really easy to make!! If you just concentrate on the fruit inside the chocolate coating you can pretend it’s healthy too. Anything is possible when you believe it is LOL! I like to dip treats in chocolate and find it pretty relaxing to stir the chocolate and let it harden over whatever I am dipping into it. I… Read more

@jenc I don’t know about you but I would classify eating baked good as an extreme sport. It takes effort, determination, and practice LOL. But seriously, I saw a meme that was a news interview and on top of it said “what are you planning on doing during the quarantine” and the woman said “just sit around eating bread and desserts and getting… Read more

I’m really not much of a baker unless you count the cookies I bake with the store bought pre-made cookie dough. However, this whole situation made me remember something my mom use to have me make with her when I was really little. We use to make chocolate covered frozen bananas with sprinkles (or jimmies which is what we call them in NJ).… Read more

Great points, @brittany-foster. I love cooking and have some fantastic dessert decorators out there. I am not the best in this area, although I can make it taste good. It may not look pretty, hehe.

I do like to be creative about once a week when making dinner. I need to start back again as I would try one new recipe per week.

My daughter… Read more

@jenc I really wish that I could just go to town with baking and cooking right now. But with the virus that I have going on, I just need to keep my distance from a lot (especially food that other people will be eating or that I will be taking bites of!) I definitely don’t want to do anything to make things worse for me or for the people around… Read more

Such a great question, Colleen. Unlike, Brittany, I am so not creative. I do like to journal and write. I think that having some creative outlet is important for everyone, even more, important for teens with PH.

Like Colleen says, I love the homemade special gifts from the heart. I often write and frame letters on a nice background and… Read more

Brittany, the gifts we make are the most special. How great is it that something you really enjoyed making is probably going to be something that your cousin will keep and enjoy for the rest of his life.

I always liked to do crafts. Especially some canvas painting along with using glue or a hot glue gun with add ons in the picture. For example, for my cousins 1st birthday I made his initial out of small buttons glued onto a canvas that I painted a background color. There’s always some cool canvas ideas on Pinterest to copy. I’m not creative… Read more

Summer just flew by as usual, didn’t it? Have you or are you about to return to high school or college? Share with us your first week back experience. Did everything go well, especially in regard to your health, or were there struggles? Have a great school year!

Hey Colleen,
Really good topic! I think that growing up with a CHD allowed my sisters to see what I was going through from a young age. But that did NOT go without sibling rivalry in one way or another. I think the hardest thing is the time that my mom takes with me in the hospital. I know that my sisters had to do many things alone that… Read more

Hi Colleen,
Hard to even think about the fact that I started college 10 YEARS ago! I really seems like yesterday. I feel like my experience might be different from others though. I went to Providence College which was about 20 minutes away from my mom’s house. I lived on campus. At the time, the only thing that I was aware of having was… Read more

Will you be starting out as a Freshman in high school or college in the Fall? If so, what are you doing to prepare for that in regard to your pulmonary hypertension? Have you notified the school of your health concerns and how did they react? What are they willing to do to help you and your needs? What are your biggest concerns in starting… Read more

There are no IEP or 504 plans in college. If you attend college how concerned where you about this before you started? Where you able to work out accommodations with your college and if so, what are they and how do you make sure that they are enforced?

Thanks Brittany for your input! My son’s care is no longer PH but transplant. I think with that there is a thicker line dividing pediatric and adult care. Luckily his doctor’s have said they will keep him as their pediatric patient until he is 21, as long as he remains stable. If things get complicated then he might have to make the… Read more

I have transitioned, but still work closely with my children’s team. I am actually getting my most recent surgery for my heart at the Children’s hospital. I know a lot of my friends with congenital heart defects and with PH that had it as a child, still receive their care at the children’s hospitals. In Boston Children’s , they have an adult… Read more

Deja,
Wow I’m really glad that you were persistent in trying to find out what was going on. I am treated with heart medications similar to what you are on because my heart rate went from being abnormally slow and needing a pacemaker to all of a sudden very fast with a higher than usual for me blood pressure. These were all signs that my heart… Read more

Hi Deja,

Thank you for joining our forums and sharing your story. My goodness, you have been through a lot in the last few months! I hope that you continue to respond to Calcium Channel Blockers and your condition improves. I don’t think you need to be nervous that you won’t make it (that anxiety in itself can cause heart palpitations)! It… Read more

Hello I’m Deja. I recently had a baby on June 29, 2018 and then started to experience bad heart palpitations. While I was in the hospital I ended up having an emergency c section and my heart rate wouldn’t come down! I couldn’t lay down without putting my head up and I just didn’t feel normal! Went home and that’s when the palpitations were… Read more

I hope that one day your boyfriend quit once and for all. I really wish him to find inner strength to do it. And I hope you will definitely help him!
Everyone can do anything!

Thank you for the encouraging words Thanush. It’s true that emotional help must be beneficial. As with trying to break any addiction, unpleasant emotions seems to come more to the surface and you have to face them head on (which is extremely difficult, but possible !) I’m glad your body was able to get used to its “new normal” without… Read more

I really understand your boyfriend!
Yes, the emotional side of quitting is very difficult to overcome. You are stressed and cannot calm down all the time. Everything irritates you. When you are looking for something to distract, it works not longer than for several hours (in most cases, less). So, sometimes, you need professional help like… Read more

Thanush,
Thank you so much for sharing your own story with us. I personally have never smoked but really admire those who quit and are trying to quit. I know it isn’t easy on anyone (even those who are supporting those who quit). My boyfriend has tried to stop numerous times. He has a motivation to stop , but the anxiety, anger, and stress… Read more

Hi,

I agree with you that smoking is a harmful habit and it has nothing good for our health. I believe that there are no reasons to start smoking. For my shame, however, I smoked for 5 years. I am not proud of it, and I’m thankful to my family and friends who’ve supported me when I decided to quit.

My quitting adventure started from… Read more

My veins were trashed after weeks on peripheral IV antibiotics post-transplant. The VeinViewer is cool, but what really worked for me to get IV’s in was an ultrasound machine that can really see the diameter of veins deep beneath the skin. It’s so cool!

I agree! Something that is easy to explain to others instead of getting into all the medical terms that would most likely go over my friend’s heads lol! I also talk in terms of how much battery is left for the day or fuel. Like for example I’ll say something like “I’m running on E right now” and they get the hint that I’m completely wiped !

I love the spoon theory! I wrote a column post about how it relates to my life: “Life with More Spoons”. It’s such a simple way to explain pulmonary hypertension and associated fatigue to my friends without going into all the details of the diagnosis.