Activity

Carol, I’m so glad that you updated us. You have definitely been through so much lately. I hate to hear that you’re still having such a rough time.

I’m sure that requiring your oxygen 24/7 will take some adjustments. I hope that after a while using it all the time that you will see some benefits.

This forum has some awesome people here,…[Read more]

Hi I know I have been quite for a longtime have been going through a rough time on oxygen 24/7 hard adjustment for me as I guess it is for everyone.
I have to turn my whole life around.i want to thank the community for all their tips and comfort it has meant a lot. Brittany and Jen you both have been a life saver. Will talk later.

Carol

I was prescribed Adempas yesterday. Still haven’t figured out how I’m going to pay for it. I got pre authorization today but haven’t been told what my cost will be.

Great topic, Colleen. I have iron-deficiency anemia and require iron infusions. I see a hematologist and he does blood work and the infusions several times per year. I developed this after PH, but my Dad is anemic as well, so we are unsure of the cause. I have not had any issues with my treatments.

My hematologist did mention that my PH meds…[Read more]

Great article, Brittany! I definitely can relate. I try to be as positive as I can in front of everyone, they don’t see the pain, the fears, or. anxieties that I often deal with. Since I have started here in the forums and also writing, I have been more open to some extent. It is still tough when my old self was always the positive, happy Jen. I h…[Read more]

Colleen, your son was quite the advocate at such a young age. I am sure with the young kids going to school and events, this is a must. He is a lucky guy to have you. Was it difficult to teach this information at his age? I know even for us adult PH patients, often some are not as educated or self-advocating.

Mary, thanks for your tips. I am not on SubQ Remodulin so I was only offering Randy support from PHriends. I am glad that you explained it better from one who is eating with it.I know that site pain is no joke. I applaud y’all who tolerate it every day.

Great tip on CBD cream as I know many are using it to help in many ways. I am sure Randy is g…[Read more]

Hehe Brittany, too funny! That now reminds me of the “Milkshake “ song from Mean Girls. Hehe

Thanks, Brittany, I am sure you can relate. I know it is crazy the many “seasons” that our bodies go through. I already do Yoga and hope to start going to the gym some with my hubby. It may be baby steps, but I will definitely appreciate when my body becomes stronger.

Shannon, so glad that you updated us. I hate that you are still at the hospital. It sounds like you have a great medical team and family support. I know that helps a ton!

I am thinking that they may try and implant the pacemaker when you are there? I’m sorry for all of the issues but so glad that you went in and they are taking good care of y…[Read more]

Mary,
I think what you describe is just what I need to do. I am on my sixth day for this site but I have had to use ice to help get to sleep. My question is just how do you apply the CBD? Is it around the IV3000 covering or do you use that at all? I am experimenting with a very low dose of CBD on the site but I see little improvement.

Thanks
Randy

Wow Colleen,
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…[Read more]

Thank you so much for the advice, Mary ! I know it is appreciated. Where did you learn about the CBD cream? I know some people who make them and my massage therapist actually uses CBD and THC infused topical creams and they really help a lot , especially with that deep muscle type pain that is hard for any pain medication to control. I’m glad you…[Read more]

I wouldn’t do much for a klondike bar, but I’d do some shady stuff for a milkshake. By “shady” I mean walking the halls when I don’t really feel like it hahahaha! Definitely a motivator for SURE!

Jen,
I would really suggest to start slow and start building your confidence back a little at a time and building back your faith in your body. I know it can be so hard to trust something that has let us down so many times before. But when I started focusing on the small improvements or building my confidence back with doing things like yoga…[Read more]

Shannon,
We are always here for you! It definitely is hard being in and out of the hospital and sometimes feeling like you are in the hospital more than home. I hope you are doing things through the day to stay as busy as possible. I know it is easy to get a little cabin fever when in the room most of the day. I am hoping that the pacemaker they…[Read more]

That sounds great, I have never added sausage before! I have guests tomorrow sounds like a great idea!