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Yes, I do get cyanosis at times due to my PH. I have had it off and on since I was diagnosed (actually before). I have discussed this symptom with my PH doctors and they are aware as this is an ongoing issue.

My cyanosis presents itself at times by pale grey or bluish lips, fingertips, toes, feet and even around my knees at times. Most often it…[Read more]

I agree, Colleen, we need more of those wholesome family TV shows.

Charles, I’m glad that you popped in and offered your thoughts on journaling . It is good to see a male perspective here. I look forward to hearing more from you .

I know that Utah has come up in discussions throughout support groups that I follow. Some doctors have flat out suggested there PH patients move from there because of the high altitude. However, I know a family who stayed and managed. If somehow your body adjusts enough without adding to progression then I guess I wouldn’t move either. That would…[Read more]

Good wholesome TV! We need more shows like these!

Thank you Charles and it’s great to hear a man’s perspective on journaling! You are welcome voice here on the forums and it’s good to hear that the experiences of others are making a difference for you too!

I love the suggestions @vanessavaile! There 20’s are quickly approaching so maybe they will find some inspirations from these works. Both my boys have a gift for writing so I’ve been surprised that they haven’t pursued keeping a journal. Maybe it’s time to revisit the suggestion with them.

Ah Jen, he’s had so many different tests and procedures over the years that sometimes I can’t keep track of them all. The dexa scan sounds familiar. I think he did have that done, it actually might have been the main one that informed us that he was done growing.

In regarding yours and Brittany’s IUD comments, I wanted to mention that it’s one I…[Read more]

I know a young woman who had PH and immediately after transplant her weight dropped dramatically. Apparently she was retaining a lot of fluids prior. I think because my son’s heart was so damaged by the time he was diagnosed his struggle was always trying to gain weight. Sometimes he would fluctuate a little and he would feel frustrated because…[Read more]

Sometimes my son’s lips would look a bit on the bluish side but usually his would go a very, very deep red and his lips would swell when his oxygen dipped or he was having other symptoms. Just like you it was often a tell that we needed to monitor him because when his coloring changed, if he wasn’t already having issues, he was about to. I did…[Read more]

Haha, I love, “ Feuding with the Fosters” …yes, it’s us three girls , definitely feuding as well.

We do have a half brother but we don’t claim him and didn’t grow up with him in our house. Sorry,if that comes off a little harsh.

Ughhh, sorry Brittany! I know the extra fluid can make us miserable.

On a positive note, breakfast with your boyfriend, Yay!

I, too, have been up and not in the recliner with my feet up. I was outside in the heat some Saturday as well, so that makes me swell more.

Yes, increased activity definitely causes me to have more fluid retention.…[Read more]

I know right….ahhh the joys of womanhood….

I know you’re not using the IUD for birth control but since it’s for the hormones, I’m not sure exactly how long it will release hormones. I know it depends on the type, but some I know were 5-10 years. Since it’s placed to help decrease the risk of uterine cancer , I would ask your Gynecol…[Read more]

Jen,
3 girls in your family too ? Did you have any brothers? My family just has the 3 girls . We always joked about needing our own reality show when we were growing up. Instead of “Keeping up with the Kardashians” reality show it would be something like “Feuding with the Fosters” hahaha!!!

Charles,
Thank you for your positive feedback on the forums ! I agree that information like this that is supported by articles is very helpful for many of our members here. I know that I personally appreciate it and it’s always refreshing for me to know that I’m not alone in this condition and that I can come to a safe space like this and just…[Read more]

I’m actually going through the same thing right now and am up 4 lbs overnight ! I KNOW it’s definitely not related to what I’m eating and I am moving around a lot more and just being on my feet more through the day sometimes really makes me fluctuate. With increased activity I also get more retention! There is some increased moisture in the air…[Read more]

Never TMI for me, Jen! Don’t worry, I have literally been through it all so I can understand. Yikes about the pain though. Definitely not looking forward to having it changed out but I have had mine for over 5 years. I don’t use it for birth control purposes so I’m curious about asking my doctor if I could wait a little longer to have it removed.…[Read more]

Brittany, coming from a family with 3 girls, I’m sure that my Daddy and Stepdad both felt outnumbered on more than a few occasions, lol

These fathers definitely need recognition and love to show just how much we do appreciate them. Man, I know that myself and my sisters’ names were on many grey hairs of our fathers. Hehe

It sounds like y’a…[Read more]

Hey Collen, it is my a great experience that journaling is helpful to us somehow. I just shocked after seeing the article. It is outstanding and very beneficial to all of us and feels proud to become a part of this forum.
Thanks a lot.

Let’s try this again, I was typing earlier and not quite awake, I guess. I must have accidentally hit a button and “ poof” went my comment.

Yes, Brittany, it’s a very tough balance and for myself there is not much room to teeter with. I also love watermelon and pineapple. Just last week, I was reminded from my PH nurse that I need to cut bac…[Read more]