Activity

Brittany I hope you can answer this question for me…. I read an article regarding PH and how PH warriors are worried about dying and how people say to them that “we are all dying” and how there is a difference in having a chronic illness and being worried about death and being healthy and thinking about it. Do you recall such an article or am I…[Read more]

Thanks for the info Rebecca!! I’m seeing my GI doc next week and will bring up these meds. Vasodilation happens all over our bodies with our PH meds and that wreaks havoc with most of us. My GI says my colonoscopy looks like NO other patient as he can visualize each and every blood vessel in my colon. No WONDER why I suffer so much! My UC isn’t…[Read more]

@normarg That is great ! I know that people really do appreciate the work that goes into something hand made. I received a hand made heart pillow that was crocheted for me after my open heart surgery and it is one of those things that I will keep forever. Those heart pillows helped TREMENDOUSLY during my recovery.

@cynthia-winston I have trouble with bloating due to digestive issues. My GI doctor said that sometimes when the diaphram doesn’t move as well or when the lungs are restricted it doesn’t create enough space in the stomach and it can get bloated like that. But that is part of my particular condition. Do you see a GI specialist? IF you are seeing a…[Read more]

A quilt isn’t really “finished” until it has a label with dates, person making, where made’ and bits of any info that you think one should know – the label is usually sewn onto the back – and some people make fantastic “work of art” labels.

I’m following this, because oxygen delivery has been my biggest hurdle. Some mention “raised diaphram”, what is that and what are the symptoms. Anyone have stomach bloating related to food and breathing issues?

Colleen,

That sounds awesome but it probably realistically wouldn’t happen lol! I do like the style of the bike though. I like bikes outside especially because it is an activity to do that is easily adaptable with my oxygen on my back. I usually enjoy doing workouts at the gym and just have my oxygen next to the equipment. I find that a lot of…[Read more]

Colleen,

This is pretty cool ! I have been on a bike for two before but we both had to pedal. It was when we were exploring an island together. I am sure you have seen that bike that just looks like 2 actual bikes together. It definitely helps when someone is able to take over and literally pull more weight.

Jo Ann,
Unfortunately sometimes we have to learn the hard way about those that have the most knowledge about certain things. Sometimes I feel like the doctors may not know all the things a respiratory therapist or physical therapist are able to tell you. It’s best to get the information from those that you trust to have the most knowledge…[Read more]

I know what you mean. I, too, have to wear panty liners all the time and take three Immodium A-Ds every day, sometimes need more.

Brittany, I read this after posting about the bike chair for special needs. I don’t know how expensive those bikes are or if you can find a nice used one but maybe that would be exercise you can enjoy. If your fiance is willing, maybe you can ride ride the bike while he walks next to you and then you could sit in the chair and he can ride you back…[Read more]

Jo Ann, living with PH is hard enough but struggling for advice and support from the people and places that are supposed to help must be so frustrating. You are to be commended for not giving up and advocating for yourself more than you should have had to. I know the oxygen delivery people can be helpful but the office and therapists should be as well.

I am on 5l 24/7 on a concentrator and 6l at night and outside on pulse on d tanks with activity. Agree that first time oxygen users (me in June despite nearly 5 years of breathing difficulties attributed to a raised diaphragm) get very little guidance. Best for me was a 24 session pulmonary rehab program suggested by new pulmonologist…and…[Read more]

Jo Ann,

What is the reasoning behind the differences in the blood pressure from the right and left arm? I had this at one point and it was due to a condition called subclavian steal syndrome. It was more than a 20 pressure difference between both sides. It caused me a lot of migraines and dizziness because of these fluctuations. I ended up…[Read more]

@ripple76 I can relate to what you are saying. I sometimes go along with my day thinking that I am doing okay and hanging in there but then when I have doctor appointments for various reasons I am reminded of my health and the state of my health in the present moment. It is hard when the brain is telling me that I’m one way but my vital signs or…[Read more]

@margie-novak thank you so much! It actually really ended up going okay! Aside from the GI issues that I had while there (which I have even when I’m home). The bus travel was a little difficult because it wasn’t a non stop bus ride. I am sure there may be some stations that are non stop from Philly to wherever without a layover, but from…[Read more]