Many people have asked me how I got diagnosed with primary pulmonary hypertension. Instead of repeating myself numerous times I started writing my story. In 1992, my Aunt Rhonda was pregnant and started having problems with weight gain and breathing. In August of 1992 at 5-6 months pregnant she went into Deaconess Hospital. The doctor delivered the baby thinking the pregnancy was causing her problems. Within 24-72 hours from going to the hospital her body started shutting down. An autopsy was performed and PH was found. She was 24 years old.
Between 1992 and 1994, my Uncle Robert, Rhonda's twin, was diagnosed with PPH. I remember that he lost A LOT of weight and his lips were ALWAYS blue. I also know that my uncle didn't follow his doctor's directions. He didn't follow them because he felt that he had to work to provide for his family. He did not have medical insurance and because of lack of state funding for PH. In August 1994 at 27 years old he passed due to the PPH.
Sometime between 1992 and 1995, my Aunt Leona was diagnosed with PPH. I remember she had to take A LOT of medicines. She had good days and bad ones. In November of 1995 she had a double lung transplant. The lungs were from a 13 year old girl from New Mexico. The "new" lungs developed pneumonia, causing her to pass the first few weeks after transplant.
Since that time, we have found out the PPH is caused from genes from my grandparents. Their genes combined to form the abnormal or mutated gene that causes PH. My grandparents had 7 children, and 4 of 7 had or has PPH.
My Aunt Tina also was diagnosed with PPH she uses Flolan and Tracleer, and some other medications. When she was diagnosed she spent 28 days in the hospital and left with Flolan, oxygen, and a pump with medication for the heart. The doctors said she wouldn't live to go home. Now 8-9 years later she has Flolan and Tracleer and a few other medicines. She is on the inactive list for a double lung transplant. She is doing so well there is talk between her and her doctors about maybe decreasing the Flolan in hopes of doing away with it.
Now, knowing that PPH runs in our family, begins my own personal walk with PPH. I was 24 years old and pregnant with twins, making this my fourth pregnancy. I started noticing I was having problems with not being able to breath and hurting when I did. I couldn't do simple things like picking up my youngest child from his bed. I had blue lips. I lost my breath A LOT. After telling my OB/GYN at the next appointment, I was put on bed rest. The doctor looked into PH and was looking for answers to what might be causing my problems. Two weeks later I went back to the OB/GYN and he wanted me to get on EKG done and to read what my oxygen rate was at. I went in at Deaconess Hospital to do the EKG was normal, but my oxygen level was in the 70's. They didn't let me leave the hospital and I was admitted. That was on Friday. Over the weekend I gained a pulmonary doctor and a cardio doctor. They decided that I couldn't make it to full term with my pregnancy. Monday Jan. 20, 2003, I delivered my twins 2 months early by c-section. Before delivery we tried to do a right heart cath. and didn't have enough time.
I spent 2-3 weeks in the hospital during which I had MANY tests done. There were doctors called in from Mercy, Baptist, and OU Children's Hospitals. Ruling out PH with an angiogram, we weren't sure what caused the low oxygen rate. I went home on oxygen. 5 months later I went off oxygen and went back to work doing CNA work. October 2004 I begin work at Mercy Hospital in Their Convent. I took care of the Sister's who are unable to care for themselves. I started not being able to breath when doing simple things like vacuuming and walking. I had to sit and catch my breath. The patients I was used to lifting on my own I couldn't any more. I was tired and weak. During this time I started having abnormal female bleeding. I went into my OB/GYN, the same who delivered the twins. We tried to control the bleeding with 4 birth control pills per day. He said that a hysterectomy would be needed. During 1 month’s time I started having more problems with my breathing and it was that I had to rest more often and even taking a nap after work just to have energy to last thru the evening.
My OB/GYN wouldn't do the hysterectomy before doing a pulmonary and a cardio work up. I went back to the same doctors who I saw before. I went to the pulmonary doctor and did a 6 minute walk, a chest x-ray, and a breathing test. The doctor said it was either asthma or pulmonary hypertension. I was treated for asthma while setting up another EKG. A month later I was diagnosed with PPH. I then went to a doctor who treats PH and is with a transplant center. I did a right heart cath and had to stay over night in the ICU. 1 month later I started Flolan. So from Feb. 2005, to May 2005, was the wait for diagnose and treatment.
Around July 2005, I started having chest pain and found out that my gall bladder was enlarged and that I had 5 gall stones about the size of a half dollar. Now I needed my hysterectomy and my gall bladder removed. Yet I had to wait to where my dose of Flolan was stable and safe. In October, I went into the OB/GYN to get a pelvic ultrasound to find I had a 6.5mm zest on my right ovary. A normal zest every woman makes when cycling is about 2 to 3.5mm. I also wanted a mole removed that was showing signs of cancer. We found a doctor who was willing to work with my OB/GYN to do the gall bladder surgery. On Oct. 20, 2005, my 27th birthday, I went into have surgery. That was at 5 a.m. and later I was admitted to ICU because my blood pressure was not good. The next thing I knew is I having internal bleeding (the OB/GYN had said that a person with PPH would 98-100% have the chance of not making it if internal bleeding happened) and was off to an emergency surgery. A surgery I wasn't expected to live through.
I got into the OR and saw my mom's best friend's husband , a.ka. Uncle Russ, who is a sub tech. I knew when I saw him that everything would be okay. I stayed 1 week in the hospital because my body wasn't producing platelets. I also have had swelling in my belly and have had to get it drained twice. The first time we took off about 2-2 1/2 liters. The second time we took off 3- 3 1/2 liters. After this time my PPH became worse and I found out I was in need of a double lung transplant. While going thru the testing and listing process I was put on Revatio. Revatio was the medicine that could help with PH and help so well that I might not need a transplant. So far it has helped and I'm on inactive status for the transplant!! I have oxygen at night at 2 liters. I take Flolan at 40 nanograms in 24 hours, Revatio 20mg 3 times per day, 40mg of Posstium daily, 325mg iron daily, 10mg Lasix per day, and 100mg of Alcdtone per day.
Now, I am the assistant co-leader for the Oklahoma Support group and am getting ready to do a media thing with the makers of Revatio. I write to Members of Congress about once a month. I also educate my friends and family about PH. I use my story on my web page on my space. I am my support group's spokes person on PH Central. I haven't gone to a conference but am looking forward to going to the 2008 in Houston, Texas.
I also want people to know that I want to donate my PH lungs to help PHers. I believe that with donating the PH lungs to researchers would give more hands on to help with medications and one day a cure!!!
PH has affected my family for many years. As of my husband, children and in-laws, it affects us everyday. There are things we can't do. We have just learned to adjust and found other activities to do. My husband and I just bought a house 2 blocks away from his work and it's closer to my doctor's and other family members. I try to stay postive and take life one step at a time.
I want to wish everyone who visits this web site to help with PH awareness, Good Luck!!