Group News

Some doctors and people say that it is your attitude that makes all the differnce when it comes to dealing with a illness.  What do you think?  Can having a great attitude about your life and the things you have to go through make all the difference in your life?  I think so, for if it had not been for my attitude i would have not made it this far.  Laughter and peace in our life does release a lot of stress in our life.  In most illness it is the stress in our lives that upset the illness.  So sometimes go out with friends and try not to dwell on your problems, just have fun.  Go to a movie pick one that will make you laugh, you will be surprize how much wieght you can let go when you are laughing, dwelling on your problems will make you stress out.  One of my changes is how i feel about my illness. I tell myself and everyone who ask how i am doing is that "I have pulmonary hypertension it does have me".  Once you able to adust to that it can make all the difference in the world.  We should get up each day with a smile, happy to be bless to see another day.  We should also make the best out of that day like it would be your last.  What i mean is that we should always try to do the things we can do even if it take all day atleast you know it was you who did it.  Find hobbies that you would love to do or start back doing and complete them.  Whatever adjustment you have to do to get the job done do it.  Like i can't stand on my feet long because of swelling so i have and bar stool with wheels on them in the kicthen so that i can sit when i amd cooking or washing dishes, this helps me a lot.  one thing i don't do is complain about my illness or my life. it is my life what i have to go through my destiny. so why sit here and complain, where is it going to get me.  When i can go out an make a differents in my or someone elses life.  like we are doing now with this group sharing every information we can with each other.  and remember that it is your attitude that can help you or break you.  Get up every morning get dress like you are going some where and set goals in your life list the things you would like to do this year and try to complete them.  Start off with small goals one's that you know is easy for you to complete, this will keep you from getting upset and once those are completed work your way up to medium task.  You will be surprize how you will start to feel when you have completed something in your life.  When we were told what kind of illness we have they gave us the doom and gloom of what we can and can't do, they told us that we were very limited to do things. Which in some of us it is true,  just focus on taking care of your body and letting go of stress  laugh and play games with your family and friends go out take a vacation do the things you have always wanted to but didn't have the time.  That's all most of us with Pulmonary Hypertension has now is time.  Tell me what you think?

I am a 26 years old survial of ph, I was diagnosed with PH when i was 25 I was told that I would not live to to see 28. I did what everyone would have done, I cried and asked why me, it's not fair, because my daugther was only 6 years old at the time. I thought about who would take care of her.  Then I said that it has to be more than this. So I dried my eyes and went to the medical libraray in our city and look up all information i could on Primary Pulmonary Hypertension, because i had never heard of it.  After i did all the research i started crying again because look at what they said there was no hope.  But i wasn't going to except it. So i started changing my lifestyle, from the things i ate, i lost a lot of weight like the doctor ask me to do.  I quite smoking, and driniking alchohol, I even gave up getting pork and fried foods i focus on nothing but healthy things to eat.  I went to all my appointments with the doctor and listen to them as well as listening to my body.  When the weight started droping off, i started breathing better, i was still on oxygen but not as much.  Doing this help prolong my life until they was able to come out with new a better treatments, or drugs for Ph.  Just when i was about to say this is it, my doctor would call me and tell me that there was a new drug or treatment on the market and he wanted me to try it.  Sometime they would work and sometime they wouldn't but it would defenilty keep me until another came available.  When Flolan came available i was very confused i didn't know what to do, but i was my daugther that convicene me to go ahead, what did i have to lose she would say. i am glad i did because flolan change my life with ph.  after being on it i was taken off oxygen during the day, i only use it at night when i lay down. Being on flolan gave me back a protion of my life back, i was able to walk to the bathroom by self, i was so happy that i was able to do somethings on my own again.  Everyone in my  family was so happy, my daugther said, it gave them back a little bit of the mom she use to know.  just when flolan was taking it toll, you know the every 24 hour changing, and keeping the bag with ice. Them came along a new drug that is like a sister drug from flolan and it is call remoundin i love it because now i don't have to change it but every other day, and no ice pack. I had my up's and down's with ph but all in all i am very happy for being here and living a good life with ph.  my motto is "I have Pulmonary Hypertension, Pulmonary Hypetension dosen't have me. "  Onc you keep this in your mind and heart you will find out that you can make it through.  no matter what comes our way.  Every morning i get up i am thankful and when i walk up stairs, or stand long engouh to cook i am very grateful to be able to do that. I found out that I, We can Live with Pulmonary Hypertension and live a very good life.      surviing for 26years  gwen