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07/13/2007 10:13 PM

I have PAH and looking for friends with the same.

Heartbrknnov3
Heartbrknnov3  
Posts: 4
New Member

[b][i]

My name is Angel, I am from Va I am on here looking to find friends on here who have PAH as well. To know how you are copeing and to have support through all this..

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08/01/2007 10:45 PM
mimi
mimi  
Posts: 12
New Member

hi, dear i also have this disease

08/05/2007 09:39 PM
Katrina13
 
Posts: 26
New Member

I could use a friend or two

06/14/2008 06:03 PM
briannasmom
briannasmom  
Posts: 6
New Member

My daughter is 8 with this disease.

07/23/2008 06:16 PM
cicero28374
cicero28374  
Posts: 451
Member
I'm an Advocate

Bad news is my specialty. As the old country song goes if not for bad news I'd have none.

In 2001 I had surgery for an abdominal aneurysm and was given the drug Trasylol, to reduce bleeding. I guess it did so I had kidney failure and am on dialysis.

Thought that that was not too bad, just expensive and a time sync 5 hrs 3 days a week and it would be more except I live close to the center.

In Jan I started feeling weak and short of breath, and got the Dx in July. Understand it may take years in some case so I am lucky. Severe is the adjective he used, not at all qualitative. Fired him on the spot.

Now looking for a Dr at UNC or Mayo in Fl.

I only have the advice I use in dialysis: help somebody else and you'll feel a lot better. I help patients into and out of their chairs. I help them build their 'nest', get the TV connected, right channel, hook up the ear phones, make sure they have the right dialyser, put their blankets around them the way they want, put snacks close by and any other thing they need and cannot do for themselves. If they want I read a devotion to them, or sing a song with them or talk about stress or whatever.

Don't know what to do in this arena yet, but I'll find my place.

Always be positive, never negative, it'll kill you and chase away friends.

Just remember that we can deal with this. We can smile and we can help each other.


02/07/2009 03:20 PM
invealna
invealnaPosts: 11
New Member

Hi Angel (beautiful name by the way). Last year I was diagnosed with severe PAH and was actually told I probably wouldn't live long since heart & lung transplants are not available in my country. It's been a year now and guess what...? I'm doing pretty darn well. I can even exercise moderately without passing out. I'm not the kind to say "there are others in worse condition..." because frankly that doesn't make things better for you or me. What does make thiings better is accepting the cards you've been dealt and making the best of it. Remember that this place is full of friends. Pura Vida ya'll.

05/22/2009 07:51 AM
Fritz
Posts: 6
New Member

Blink Hi Angel, lovely name, I too have PH. It is a bummer!Sad But, first you have the best friend you will ever need, which is Jesus. But I must say, it is hard for family or friends to realize how you feel or understand. My husband keeps telling me I'll get off oxgyen soon, on 7/24. I have found when you are tired--rest! I have found little ways to make my oxygen more comfortable, I wear my oxygen off the back of my neck, instead of the front, that way it hangs down my back and not under my chin. I also use a smaller canuala, the number is 1616,it is smaller and not as noticable on my face (day time use only, you can't sleep with this canula it is too small and the air will hiss). I don't carry a oxygen bag, I put the oxygen in a large printed pocket book or any bag that I can find that is comfortable and pretty. I have put a wire container with drawers beside my commode, I keep my underwear and nightgown in it. That way, it is easier for me to get dressed and not as stressful. Find anyway you can to help yourself, and please don't be afraid to ask for help with your family. My husband puts my shoes and socks on every morning. This is a great help Cheerful Just a few tricks can help you along the way. God bless and don't forget to always look UP! Kissing Smile Smile Tongue

05/22/2009 08:00 AM
Fritz
Posts: 6
New Member

Something I forgot to add, when I cook I always make an extra dinner to freeze. Many evenings I'm too tired too cook, sometimes to eat. I also keep lots of fruits and veggies to snack on or to make a quick salad for a meal. I try to think ahead (that is when my head is clear)and be a step ahead of myself.

05/22/2009 07:46 PM
stacenewbie
Posts: 24
New Member

Your freezing a meal idea was helpful. Sometimes its little things like that we forget to maybe to to make a day easier. I was diagnosed with PH two months ago and at first my world was turned upside down, but thankfully my case is not very severe but I was finding that some days I feel great and then the next I may feel extremely overwhelmed and tierd. I thought maybe I was doing something wrong on those days but after comming to this site Im learning that maybe thats just the nature of the disease, its learning how to make yourself rest and take it easy on those days. If you have any other little suggestions I would be greatful! Im 37 and a single mom of a 16 year old boy so Im trying to keep things somewhat normal for him.

Thanks for posting something positive and God Bless!


05/26/2009 06:55 AM
Fritz
Posts: 6
New Member

Bless your heart, considered yourself hugged! It was hard enough for me at 62, I can't imagine how I would feel at 37. I have found the days when I feel good, don't over do it! Make sure you rest! I work, then rest, then work some more. I try to remember to try to relax. I find laughing is a good thing. I tape the British comedies, like Last of Summer Wine, Keeping Up Appearance, and when I'm feeling down, I turn on one of these shows. They last only 30 minutes and I find myself laughing out loud.Laughing Prayer is my first help and by your post, I don't have to tell you that. Are you on oxygen? If so, I have some tips on that can help you. Don't be afraid to ask friends and family. I always hate to ask for help, but I have found, I have too. I have a wire unit with drawers beside my commode, I keep my underwear in it, that way I can get dressed and save a lot of energy. I use a chair in my shower, I found that sometimes it helps to sit down when I take my shower. I try to lay out what I'm going to wear the night before. I also have made my dinners a lot less complicated, lots of salads with a grilled meat, I let my husband grill the meat, then I only have to do the salad. I bet a 16 year old would help his mom if she asked and praise him how good it is. Inform the family how debilating this disease can be. I know my family refused to believe me or they just didn't want to accept that I have something that can't be operatered on and make it better. When I know I'm going out in the evening, I come home and rest, or rest extra that afteroon. I still go to work everyday and the first thing I do when I come home is REST! That's right the key word is rest. God bless and take care. ccfWink Smile

Post edited by: Fritz, at: 05/26/2009 07:07 AM

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