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How do you keep warm?
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@la66reyes I cracked up laughing when you mentioned your cats because I meant to mention my dog. She likes to sleep under the covers and will curl up against my stomach. I have a cat too but my husband is his “person”.
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Haha, @la66reyes, I bet that your cats do keep you warm. I call our mini schnauzer, Sasha, my snuggle bear. Like Colleen, her person is my hubby if he is home, though, lol.
It sounds like you have lived in some interesting places, Liz. That is cool. Are you near Bakersfield, then? I lived in small-town outside of Bakersfield in like 6th-7th grade, so a few years ago.
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Jen Cueva yes my Drs are in Bakersfield…I got dogs too . Big ones ????
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I live in Illinois. The down comforters can be pricey but I watch for sales and use coupons. I do have a lighter weight one because you can layer just like I do for clothing. Yes, I can get hot at times so that is when I throw off a layer.
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@jblum the down comforters can be pricey. Our was a wedding shower gift from my in-laws. We’ve been married for 25 years so the comforter was replaced a long time ago and I haven’t invested in a new one yet.
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I like to cuddle-up every night for TV. I have a night gone on with a sweather and jammie bottoms. I use a blanket all over. I turn into a mummy in my lounge chairs. I keep socks on my feet and the blankie tucked around my feet and doubled over around my hands. As soon as my hands are warm, the rest of me seem to be nicely “done” so my shoulders and upper arms come out.
anne
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I find it nearly impossible to regulate my body temp. I am always one extreme or the other. It seems I will be freezing one moment without any way to shake it and the next moment I feel like my body temp is so hot I feel like I have a fever. No matter if I’m feeling hot or cold though, my feet always seem to feel like they are frozen. Living in Douth Carolina doesn’t help though as right now we start the day in the 30s and around 4PM it’s almost 70. For the most part I’m freezing when I wake up, hot all day, cold when I lay down, sweating in the middle of the night and wake up freezing again. Lol
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@whit1236 I use to always be cold but now I’m more like you. I’m often one extreme or the other and it changes throughout the day, so I sympathize. Do you have heart issues with your PH? The cold feet can be a symptom of that but then again, so can vasodilators if you are taking any. How are you doing otherwise?
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@colleensteele I was just diagnosed with IPAH almost exactly a year ago (FC 3) and at the same time I was told I am also in right heart failure, I have a hole in my heart (which shouldn’t pose any significant additional risk) and that I have Mixed Connective Tissue Disease. I was in the hospital for just over a month and by the time I got out COVID had started to take over so short of an emergency it’s hard to get in with a doctor. So I feel like I’m learning about PAH and heart failure on my own. My body has seemingly gone haywire though since my diagnosis. I had to have all of my teeth removed because they said my body was not healthy enough to maintain them and after the surgery my Lasix stopped working so I had 2 ER visits directly after the surgery. My body has also started getting these open sores and bruising without any explanation. Is it typical to have a ok many issues at the start of this whole thing? Like I said I’m having to learn all of this in my own so I’m not really sure what to expect and what’s cause for concern. It kinda makes me hyper-aware of every single thing that happens with my body which can be both good and bad. Sorry for such a long response, just trying to thoroughly explain the situation. ???? Thanks for reading my short novel!
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@whit1236 no such thing as a long response. Please share as much as you want and need to.
My son eventually developed right heart failure as well. Has your doctor discussed Milrinone with you? You might not need it yet but in case it comes up, my son was treated with that. You can go home with the Milrinone pump and live your life…my son still went to school. He had both the Milrinone pump and a Flolan pump. Just sharing to give you some hope.
Are you on any blood thinners that could be causing the sores and bruising? I assume you have mentioned these skin problems with your doctor. Have you been checked for anemia? Just brain storming for suggestions of what might be causing this. What type of PH treatments are you on and are you seeing a PH specialist?
It is common to have another disease prior to PH or develop co-existing conditions prior. You say you are hyper-aware but I say you are being a strong self-advocate. That being said, do try to set time aside each day to clear your head. Enjoy something that you know will distract you. Life isn’t just about quantity, but quality. I wish you happiness as well as good health.
You might like to skim through the following post regarding dental issues. https://pulmonaryhypertensionnews.com/forums/forums/topic/do-you-have-dental-issues-related-to-diuretics-or-ph-meds/
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