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Libby replied to the topic Where is the Strangest Place You Had An IV Placed? in the forum Diagnosis Information and General Questions 3 months, 3 weeks ago
Brittany- I, too, have had several in my head as a child. I have four very large “cut down” scars from them literally cutting the skin to expose the vein from when I was young. They rarely do cut down anymore. Now days my hand or wrist area is the go-to.
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Libby started the topic Your VO2 stats in the forum Exercising with PH 4 months, 3 weeks ago
I am wondering if anyone knows what their VO2 stats are during an exercise test/exercising? I was reviewing some detailed notes from my doctor of a stress test I had done back in January and if I’m understanding it correctly, I’m a little horrified. 😛 Your VO2 is how much oxygen you can take in at peak exercise. So I’m 25 years old and at the…[Read more]
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Libby replied to the topic Do you Have Low Blood Pressure? in the forum Side Effects and Symptoms 4 months, 3 weeks ago
Interesting you bring this up because last time I was at the doctor’s office for just a primary care check up, they commented on some unusually low blood pressure. Low for me, I mean. Usually I’m around 110/65 or 70. At my last visit in June I was 94/60 and they showed some concern. My heart rate is also pretty low, although not too low. It’s…[Read more]
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Libby replied to the topic Dealing With Well Meaning Advice and Comments in the forum Mental Health 4 months, 3 weeks ago
I hate it when people listen to a watered down version of my health issues (because a detailed, accurate description would probably short circuit their brain 😀 ) and they respond with “….but you look so healthy?” As if I’m lying to them.
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Libby replied to the topic Choosing a Medical ID Bracelet and What to Put on the Tag in the forum Diagnosis Information and General Questions 4 months, 3 weeks ago
LOL not a bad suggestion Colleen 😀
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Libby replied to the topic Interesting Article/news story in the forum Awareness and Advocacy 4 months, 3 weeks ago
Great article Brittany, thank you! What’s even more frustrating is when your health issues are congenital and you know about them, so it’s only reasonable to believe your symptoms are related to your already-existing issues but your doctor deems them ‘unrelated’.
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Libby started the topic Interesting Article/news story in the forum Awareness and Advocacy 4 months, 3 weeks ago
Hi all – this article popped up on the news and even though it’s not directly related to PH, what this woman has gone through I am sure resonates with all of us quite a bit! I really feel for her and her experience of brushing her symptoms off as “stress”. Happy reading!…[Read more]
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Libby replied to the topic Choosing a Medical ID Bracelet and What to Put on the Tag in the forum Diagnosis Information and General Questions 4 months, 3 weeks ago
To me it’s a catch 22 with medical bracelets or something that goes in your wallet. Since the installation of my Melody Valve, my doctor gave me a plastic card (looks like a credit card) that apparently a medic/doctor could scan and get info, but since it’s in my wallet, I don’t forsee anyone being smart enough during an emergency to find my…[Read more]
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Libby replied to the topic Blue feet in the forum Side Effects and Symptoms 4 months, 3 weeks ago
Thank you for the responses gals! I apologize for a bit of a duplicate topic, as I missed the Cyanosis thread 🙂 Yeah my doctor is aware that I get purple feet but it seems relatively new that it continues to happen with the warmer weather now too. I live in Washington and we are only just now experiencing some weather that resembles summer and my…[Read more]
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Libby replied to the topic Does anyone get cyanosis with PH? in the forum Side Effects and Symptoms 4 months, 3 weeks ago
I get purple feet and knees! And those little red circles you mentioned Brittany, sort of blotchy-like.
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Libby started the topic Blue feet in the forum Side Effects and Symptoms 4 months, 3 weeks ago
I have always gotten purple/blue feet when I’m cold due to poor circulation. I believe it’s called rheinauds (sp?) disease? However, it used to only happen when I was cold but I have been noticing lately that despite it being very warm outside (75 to 80 degrees) my feet have been turning purple while I’m sitting down for more than about 10 minutes…[Read more]
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Libby replied to the topic Birth Control options with pulmonary hypertension in the forum PH and Co-Existing Conditions 4 months, 3 weeks ago
I used hormonal birth control pills from age 17 to 23 and had NO idea it wasn’t recommended for heart patients. No one ever told me this, I found out after reading the warning label out of boredom. LOL I got off birth control because it was causing me to have weird PMS cycles and no sex drive at all. For a while I used the Daysy, a European device…[Read more]
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Libby replied to the topic Does going into the hospital NOT as a patient trigger anxiety? in the forum Mental Health 4 months, 3 weeks ago
I feel heartless for saying this, but quite the opposite for me. I am SO used to hospitals, needles, surgery, etc. that it almost feels comforting and I don’t get worked up easily. I feel bad for my husband if he ever needs to go to the doctor just because I know he hates it but I am much calmer about it than he is.
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Libby started the topic Melody Valve in the forum PH and Co-Existing Conditions 4 months, 3 weeks ago
Hi all – I am sorry if this isn’t an appropriate post for this forum since it’s not exactly PH related. If so, please delete. I had my pulmonary valve replaced 2.5 years ago with a mechanical valve called a Melody Valve. They are supposed to last between 3 to 5 years, but I’ve heard of some lasting up to 10 years. I was just wondering if anyone…[Read more]
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Libby replied to the topic Who Has PH Along With Heart Conditions/ Heart Disease? in the forum PH and Co-Existing Conditions 4 months, 3 weeks ago
That’s exactly right Brittany! I hate the ‘wait and see’ approach too only because you know it’s inevitable and all the well-wishers in my life always tell me ‘maybe you’ll never need it done! Maybe your valve will last forever’. Honestly I hate it when people try to be positive about my health issues, only because it feels like a minimization…[Read more]
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Libby replied to the topic Anyone diagnoised with Group II Pulmonary Hypertension in the forum Diagnosis Information and General Questions 4 months, 3 weeks ago
Hi Brittany – yes that is exactly the case for me regarding the meds! The doctor says that some of the PH meds can interfere with my heart so it’s better just to let it be. I was only diagnosed with PH 2 years ago which boggles my mind. I’ve had CHD obviously since birth and since they are so complicated, it’s amazing they didn’t find it earlier.…[Read more]
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Libby replied to the topic Who Has PH Along With Heart Conditions/ Heart Disease? in the forum PH and Co-Existing Conditions 4 months, 3 weeks ago
I also have heart disease as the cause for my PH. I was born with ASD, VSD, pulmonary stenosis, pulmonary atresia, dextacardia, situs inversus, congenitally corrected transposition of the great arteries, absent pulmonary artery corrected by surgery with a shunt, absent pulmonary valve, pulmonary and tricuspid valve regurgitation at around 30% ,…[Read more]
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Libby replied to the topic Anyone diagnoised with Group II Pulmonary Hypertension in the forum Diagnosis Information and General Questions 4 months, 3 weeks ago
Hi Mandy – I’m sorry to hear of your new diagnosis. MY PH is caused by LHD. I have a laundry list of heart defects.
-Pulmonary stenosis
-Pulmonary atresia
-ASD
-VSD
-Pulmonary Hypertension
-Congenitally corrected transposition of the great arteries
– Born with absent pulmonary artery, corrected by a shunt
– Tricuspid and pulmonary valve…[Read more] -
Colleen Steele and
Libby are now friends 6 months, 3 weeks ago
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Libby started the topic what indicated you had kidney issues? in the forum Side Effects and Symptoms 6 months, 3 weeks ago
I have seen a few posts recently about kidney issues as a result of PH. I am just curious what clued you in (symptoms and signs) that your kidneys were under the weather?
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