June 21, 2021 at 12:53 pm #30858
Here in the PH News forums, we are always excited to watch our PHamily grow. So we are happy to have so many new members within the last few weeks.
Some come in and read first before they are comfortable to post. But never hesitate to reach out to me or @colleensteele if you have questions about the forums. We want this to be an enjoyable experience and for everyone to feel welcomed.
Let’s welcome @scoop6470, @sueb, @jleslie, @ajankowski, @bakingkate, @perilous, @sandy2gmail, @stefanie, @eitan-armonlin-health, @cindy2021, @autumn2021, and @grandmadaley to the forums. I hope that I did not leave anyone out.
If you have not yet, please introduce yourself a little. Here are a few suggestions to help get you started.
Your name and location?
Are you a patient or caregiver?
How long ago were you diagnosed with PH?
What PH medications are you currently on?
Do you have any questions for our members?
We look forward to learning more about your PH journeys. If y’all have any questions about the PH forums, please reach out to me or @colleensteele.
June 21, 2021 at 1:49 pm #30861
Welcome to the PHamily everyone! I know it’s not one you would have chosen but you will come to appreciate that we have each other.
June 29, 2021 at 5:25 pm #30967Diana ShirleyParticipant
Hello I’m Diana I live in Keysborough Melbourne. I was diagnosed with COPD about 5 yrs ago, I have been short of breath about 10 years ago After a night in ER a cardiologist phoned me and suggested some tests Test after test led to right heart catheter and my diagnosis about 4 months ago My pressure is 27 and I have been taking Ambrisentan for a month So far a small benefit I hoped for Taladafil but my cardiologist believes an almost 80 yr old who can’t walk and talk at the same time would not impress the government I have been improving nitric Oxide with beetroot powder and doctors suggest I continue taking it and that I find a walking companion who walk at my pace
September 14, 2021 at 9:01 pm #31833Aunt LizzieParticipant
Hi Diana Shirley – Was interested to see your post. I’ve been on Ambrisentan for several years. Was diagnosed with PH late 2012 then had 2 stents and a pacemaker a couple of months later. Your pressure at 27 I thought was normal, so your breathing problems may have another factor operating. My pressure was 53 – very serious – and is now about 40, but I am surprisingly well. It was suggested at one stage that I take tadalafil as well, but as I am so well I saw no reason – especially after researching the side effects. Aint PBS and Medicare wonderful?! I’m in Sydney so keeping well isolated at present. You stay safe. Cheers.
August 4, 2021 at 4:01 pm #31351
Jen asked for more info on the personal side — I’m guessing this is the right place?
At any rate, I’m a retired Navy wife, my husband was a 30 year career man.
The horses were my favorite thing from childhood on. We raised a couple, showed several and just simply enjoyed the creatures. My last horse, was retired and at age 27 was humanly put down as a result of some serious digestive issues. He was undoubtedly the love of my love. A sweeter animal there is not to be found. He was my dressage horse.
After we retired we settled in Virginia and I suspect this is the end of the line for me.
We saw much of the USA and had a four year tour in Iceland. That’s enough winter for a life time I’d say.
September 15, 2021 at 1:28 pm #31842
@indihomaaol-com we have many members here who have a military background. My husband was a nuclear engineer on a sub but was on desk duty and about to get out when we met. He was hit head on by a drunk driver and seriously injured. That put a quick end to his military career. My father-in-law is retired Navy. My husband experienced all the moving around as a kid. He was actually born in Hawaii because that is where his dad was stationed at the time. My dad is a retired Marine but he was out by the time I was born. Thank you and your husband for your service. Needless to say, I have much respect for the military.
I have such a soft heart for animals, so reading about your horse made me tear up. The death of a pet can be a heartbreaking loss.
So glad you made your way to the forums. I hope you will find it welcoming and helpful here.
September 15, 2021 at 2:53 pm #31844
Thank you Colleen, so very sweet of you to take the time. Right now things are abit unnerving, hopefully they will get better. See the pulmonary doctor on Tuesday, counting every minute.
September 16, 2021 at 10:25 am #31851
Hi @indihomaaol-com, I am sorry to hear that you are having a rough season. I hope that your pulmonary doctor will have some suggestions that may help you get through this challenging season.
I like to think of things like seasons, which reminds me that if I’m in a rough spot now, the season will change soon. I am sending you extra love, hugs, and prayers from Texas.
How can we best support you at this time? Please update us when you are feeling up to it.
August 5, 2021 at 12:59 pm #31362
Wow, @indihomaaol-com, thank you, and you’re husband both for your service. My husband is also a Veteran of the Navy. Unfortunately, we did not travel as much as you, but he served about 7 years.
He was stationed in Coronado, CA, for the most part. I miss that area so much. WE are now in Texas. He did many East and West pack tours.
Iceland sounds interesting.
I hate to hear about the loss of your beloved horse. Horses have been such a therapeutic thing for many who have the joy of spending time with them. Growing up, I was around some and a pony that my Pawpaw had for us. Sadly, I recall we found him dead in the pasture eaten by a wildcat one morning.
You found the perfect place to add some about yourself. Thanks for sharing some of your stories. They say Virginia is for lovers; I have never been, but I see in pictures some beautiful areas.
How do you like it there?
August 5, 2021 at 1:46 pm #31367
Virginia is lovely — our area is growing by leaps and bounds so it takes awhile to see the lovely countryside.
I’m with you — I absolutely loved San Diego. We got to stay there a whole 11 months before moving on. Bummer.
August 10, 2021 at 10:24 am #31419
Hi @indihomaaol-com, I bet the fall season is gorgeous in Virginia. I loved San Diego, too. But I also love fall, and of course, in SD, neither here along the Texas gulf coast has these seasons.
Virginia is certainly a place I would like to travel, so many places on my travel list. Thanks for sharing your thoughts on Virginia.
August 10, 2021 at 12:52 pm #31424
Yes, the fall season is worth waiting for. The nights are cool and the daytime tress are really beautiful.
Is there someplace I can find some recipes for folks like us. Met with a PA in cardiology yesterday and they are a very “plant” based practice. She ruled out all meat and dairy products, and no salt as well. Hum….. Oh well. Looking for suggestions in that area. Will see a pulmonary doctor tomorrow and see what he has to say. I’m beginning to think there isn’t much experience in pulmonary hypertension here. Joy.
August 11, 2021 at 10:33 am #31439
Hi @indihomaaol-com, the fall season sound awesome there!
I don’t n know where in Virginia you are located, but I know a few PH centers are in VA. One is Inova, which I have heard great reviews about. Here is a link there and one other PH center in VA. There are a total of 4 PH centers in VA. You can view them as you see the map from the links.
About the diet that they suggested. We do have a diet sub-forum. I will look there. I only know a few PH patients that tried plant-based diets. The majority are told a low sodium diet, so maybe they want to see the other specialist.
I love veggies, but cutting all of those items out for me would be a challenge.
I can feel your frustration about the lack of knowledge about PH. Were you see by any of these 4 locations? It would be in your best interest if not. These PH centers see PH patients and stay up to date on the newest treatments and breakthroughs.
Have you started this diet? Or are you holding off until you see the specialist?
August 11, 2021 at 10:47 am #31440
Saw my pulmonary doctor today. According to all the test results my PH is very low. He feels that at this time we can deal with it locally. Going to INOVA would be a bear of a drive for an old lady like me. Doctor is well aware of the PH Centers and has good thoughts about them. UVA at Charlottesville, is closer, with back country roads, but still 63 miles from me. As far as the diet is concerned — I’ll make some adjustments along the line, but I’m in no frame of mind to give up meat. My COPD meds will be changed to a nebulizer delivery system. Both cardiologist and pulmonary doctor think this is the right way to go. Will follow up in two months to see how the meds are doing. Will be starting pulmonary rehab asap. Sitting around for the COVID 14 months hasn’t done any of us any favors. Ahem. I will do another VQ scan as soon as the local hospital starts doing them again, the ventilation part was stopped because of COVID — duh??? Whatever.
Thanks for the thoughts.
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