OUR JOURNEYS

Patient story

Nakia Allen

My name is Nakia Allen, I am 33 yrs old and have a 17 month old boy and I am also married. I was diagnosed with PPH in Sept 07. For about 6 months I had noticed a change in my body where I was tired all the time and I became short of breath by doing the smallest thing. I thought it was from chasing my son around. But it got worse, and it did so quickly. I began going to the doctor and complaining that I wasn't feeling well. The doctor at the time ran a blood test and sent me on my way saying he couldn't find anything wrong with me. I went home feeling frustrated because I know my body and know when something is wrong.

I started not being able to walk up stairs and began having pass-out spells. This landed me back in the emergency room where that doctor also ran blood tests and sent me home. Before I left I let him know that I was sick and I felt like no one was listening, so he gave me the name of another primary care doctor that I could see. I made an appointment with her and right away she was very caring. Her name is Dr. Hurley, and she began running test on me right away trying to detect the problem. At first we thought it was a thyroid thing because I have thyroid disease. But it still got worse, finally it got to a point where I was seeing her a lot and paging her on the weekends. Well one weekend it had got so bad my stomach began to swell, I could hardly walk or breathe, so I called her again and she said go to the hospital, we went and when I got there they thought it was my gallbladder, so they ran test and it wasn't. My doctor had them admit me anyway.

While I was there I got out of bed to go to the bathroom while walking in there I was having a hard time breathing, all I remember next is hitting my head very hard on the bathroom floor, I don’t know how long I was there but when I woke I had a huge lump on my forehead, I rang for the nurse and they ran in and helped me back to bed, that’s when they asked again what was I feeling before I passed out and I told them I couldn't breathe. From there they began running test on my lungs and heart and that’s when a very wonderful cardiac doctor by the name of Dr. Klemis came to see me and told me I had PPH. He told me my pressures were like 107 in my lungs and I had right heart failure, which would explain the stomach thing. He got me out of bed to walk and I barley made it out my room before my oxygen level dropped, right away I was put on oxygen and a right heart cath was done. I passed out 2 more times while in the hospital, I was no longer allowed out of bed without help. I also had 2 black eyes from the first fall. I was then started on revatio, digoxin, lasix, nifediac, and other meds for my thyroid and blood pressure. I was also put in contact with a wonderful pulmanary doctor by the name of Dr. doty.ALL 3 doctors are GREAT! they have taken such good care of me. I can call them at anytime if I have questions or concerns and they are always there for me. I am extremely thankful for them.

Of course I was devastated, my husband and I both. I was afraid of what the future now holds for me. I want to see my son grow up and see wonderful grandchildren, we cried for some days straight, all I could do is look at my son and cry. But then I started looking at all the wonderful people around me, my family, friends, pastors, and people I didn't even know began to pray over me, I turned my faith over to GOD, I told myself I was either going to give up or fight for my life, and I chose to fight. I started by taking my meds on time every day, keeping all appointments, first and foremost, got on my knees every night and during the day sometimes and prayed for GOD to heal me and give me strength.

Two months after my diagnoses I went back for an echo because I was feeling great and it showed my pressures were down to 35, and I went from a level 4 to a level 1, and now the doctors say I have a mild form of PPH. I know it was GOD who made me feel better and my wonderful doctors. I am also very grateful for all my friends and family who are very supportive. I don't know what my future holds, but with the power of prayer on my side I have hope for the future. Thanks for reading my story, and.......NEVER GIVE UP!

 

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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.