OUR JOURNEYS

Patient story

Kim Craft

November 18, 2008

Hello. I was diagnosed with pulmonary hypertension in June, 2008. This came after 2 years of shortness of breath, weight gain due to intolerance to exercise, frequent chest pain, fatigue to the point that I took a nap every chance I got and was unable to care for my family let alone my own activities of daily living.

I kept going to my doctors and they kept saying I must get the weight off. I was so discouraged because I would try so hard and the scale would not budge. I was a nurse with 32 years of experience and half believed that I was "just out of shape".

I worked 12-13 hour shifts 2 days a week till June. On my off days I could barely get up often sleeping in the lazyboy chair. My family was supportive. I don't know what I would've done had they not been.

I had never seen pulmonary hypertension listed as a diagnosis and had to look it up when my diagnosis was given. You see my cardiologist told me "you have pulmonary hypertension" during the latter part of a cardiac cath. That was all the explanation I got-he left.

I was referred to a pulmonologist a week later - you can only imagine what I went through with the wait. I looked this up on the web and was thankful that I found the PHA association website. I was given much info from people who have gone through oh so much with this menace of a disease. I did see a ph specialist under the encouragement of the ph friends on this website. He was able to help my symptoms with medication.

5 months after diagnosis I have many more good days. In June I really didn't think I would make it till July. The shortness of breath was severe, leaving the house was dreaded since I could not breath in the humidity. My son's wedding was in June and I can barely remember it because I kept thinking I was going to collapse. I have sleep apnea and atrial fibrillation(which is controlled with meds) and I use a cpap machine to sleep at night. The doctors think my sleep apnea was caused by my obesity and sleep apnea. I never smoked or took illicit durgs, never had asthma. Never did I dream that I would have this.

When you see me park in a handicap parking spot you may not recognize me. You may think I don't deserve to park there, trust me looks are deceiving. You can't look at someone and know how sick they are.

I have learned to cherish each moment of my day, my family, my friends, each experience.G od's word says to Be still and know that I am God. Yes I give thanks to God because He is with me through it all. A lot of people are on oxygen, lung transplant lists and iv meds to give them hope. And yes we do have HOPE.

We need for people to be made aware of this ilness so more research can be done to find a cure. Now the only cure is a lung transplant and often a heart is needed as well. Go to the www.phassociation.org website and learn more about this disease. I am sure there are many people who have this that have not been diagnosed, meaning they do not have access to proper treatment. Please learn more and help us to have HOPE.

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.