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Patient story

Gina Tackett

"My doctor started me on blood pressure medications and said I should be fine. However, the shortness of breath continued and I could hardly care for my newborn, I attributed this to the fact that I was simply out of shape since I had gained 65 pounds during the pregnancy."

Hi, my name is Gina Tackett and I have primary pulmonary hypertension (PPH). I live in Little Rock, Arkansas and I was diagnosed in July of 1993. I was in perfect health and became pregnant with my second child at the age of 26. The pregnancy was very difficult compared to my first during which I had no complications. I struggled through the second and during my final month my blood pressure became dangerously high. The doctor recommended we take the baby and he said this would resolve all the issues I was having. We induced and my daughter was born Feb. 9, 1993. However, I did not get to see her as I suffered severe bleeding and elevated blood pressure and remained in intensive care unit (ICU) for several days. Finally, four days following delivery I was released to go home with my new baby thinking everything would be fine.

After recovering from the birth my condition became worse. I suffered from extreme shortness of breath and my blood pressure continued to be elevated. My doctor started me on blood pressure medications and said I should be fine. However, the shortness of breath continued and I could hardly care for my newborn, I attributed this to the fact that I was simply out of shape since I had gained 65 pounds during the pregnancy. It continued to the point that on July 3, 1993 during the night my infant woke up at 2:00 a.m. for a feeding, I got up to prepare a bottle and as I bent over to get her out of her crib I passed out and quit breathing. My husband called 911 and I was transported to the local hospital.

"I was completely devastated. They told me my only hope was to seek a lung transplant as soon as possible. I probably had about six months to live."

Over the next three days they conducted every test under the sun and came to the conclusion that I had PPH. They told me that unfortunately this was a very rare and deadly disease for which there was no treatment or cure. I was completely devastated. They told me my only hope was to seek a lung transplant as soon as possible. I probably had about six months to live. My pressures were 93 at that time. I went home and cried a lot. The thought of never seeing my child grow up was the most devastating thing I could imagine. After many dark days of crying and utter depression I decided to start making calls to major transplant institutions thought the country. The statistics were horrible. I was devastated.

Then, in August of 1993 I received a call from a Dr. Stuart Rich, with Rush University in Chicago, Illinois. He told me he was given my name by the transplant coordinator. He was told that I was diagnosed with PPH and seeking a transplant. He urged me to come to Chicago to see him for an evaluation before I considered transplant. He said he had been treating PH for many years and had one of the largest programs in the country for treating PH patients. I was very skeptical since I had seen four doctors who all had come to the conclusion I would die without a transplant. He urged me come be evaluated. He told me he had options other doctors could not offer. After agonizing and simply struggling to breath daily I decided it was worth a shot to hear his opinion. I traveled 12 hours to Chicago to Rush.

"He said I was out of options and I would die without Flolan. It seemed so overwhelming--I could not imagine how I could live like that. Finally, I decided it was a sacrifice I would have to make if I wanted to be here for my daughter."

Dr. Rich conducted all the usual tests. While in in the catheterization lab, he gave me calcium channel blockers and praise the Lord I actually responded. Flolan was not available in 1993. He started me on Procardia and all the usual drugs Coumadin, Lanoxin, diuretics, etc. I returned home and continued to see improvement my pressure dropped to 35 after a year. I was feeling better, breathing better and had a new lease on life. I truly believe the Lord stepped in and led me to Dr. Rich.

In 2001 my disease had progressed and the Procardia was no longer working. Dr. Rich told me about Flolan and I told him I would rather die than be connected to a 24 hour intravenous (IV) medication. He said I was out of options and I would die without Flolan. It seemed so overwhelming--I could not imagine how I could live like that. Finally, I decided it was a sacrifice I would have to make if I wanted to be here for my daughter. She needed me. I agreed. I once again traveled to Chicago to initiate Flolan therapy. I arrived and was admitted. They called in the special procedure team to insert a peripherally inserted central catheters (PICC) line to start the drug. I was sitting on the bed as they were inserting the PICC line and suddenly things took a turn for the worse. I fully coded. I have no memory of the events that took place, but I woke up in the ICU an hour later. They successfully brought me back and got the PICC line in and the drug was started.

"I am so thankful to Dr. Rich he literally saved my life. I have been stable for many years and can do most anything I want..."

I was very lucky again the Lord was with me. I spent 14 days in the hospital fighting side effects, learning the mixing technique and learning to walk and eat and take care of myself. It was the most traumatic time in my life. I was terrified of the mixing process never thought I could do this on my own. I returned to Arkansas and began my new life with Flolan. It took time, but I am currently on 27 ng/kg and have been for 11 years.

I am so thankful to Dr. Rich he literally saved my life. I have been stable for many years and can do most anything I want except climb stairs. I added Revatio to my medications in 2004 and am able to live a normal life, the only thing I can’t do is climb stairs. I returned to Chicago in December 2011 and did over 15 minutes on the treadmill. Dr. Rich said he could not ask for better results.

"I live life one day at a time and am thankful for every day. My daughter is 18 now and I am so thankful to be here to see her grow up. I never thought that would happen. I am considered a long time survivor and that is a miracle."

I live life one day at a time and am thankful for every day. My daughter is 18 now and I am so thankful to be here to see her grow up. I never thought that would happen. I am considered a long time survivor and that is a miracle. There are no pulmonary hypertension (PH) doctors in Arkansas, so I continue to see Dr. Rich. He is the most compassionate doctor I have ever had the privilege to be associated with. He saved my life and I am grateful he gave me my life back. PH is a terrible disease, but now I just feel thankful for each day. Mixing is second nature I think I could do it with my eyes closed at this point and a small sacrifice considering that I have been able to watch my child grow up. In 1993 they told me that would never happen.... Well, never say never. I remained on calcium channel blockers for eight years and then the disease progressed as expected.

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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.