Friday, 24 October 2014

PHighter Friday: Donna

 I had my son in April 1988. He was 4 weeks premature because I had pre eclampsia. He was perfect though. I was very lucky. When he was 3 months old I traveled with my parents to Hawaii to visit my brother and his baby girl. She was born 2 weeks exactly after my son. We were there for 2 weeks.  One day while we were there, my brother, his wife, and I decided to climb Diamond Head.  We were climbing and my sister in law was just bouncing up the volcano.  I was having a rough time and said, well, I can't blame it on just having a baby because she just had one too. Then we finally got to the top and there were about 30 stairs straight up and I looked up and said. What's wrong. I can't do this. But my brother was very patient and I finally got to the top and the view was GREAT.

Came back home, very difficult marriage.  Very difficult. I got sick and couldn't shake the cough so I was sent to a pulmonologist, he gave me inhalers to treat me for asthma.  That didn't work, 2 weeks later I went back and he added more inhalers and did a chest X-ray. He remarked about this big thing on top of my heart but he didn't know what it was. Took the X-ray to the radiologist at the local hospital. That dr said ah that's normal.

Later that year, I was going through a divorce and the doctors I worked for ( I was a nurse), thought my racing heart was from stress so they gave me something for stress. That didn't help my heart slow down so they thought I had Mitral valve prolapse. They gave me a Beta blocker. This was in November 1991. I started the Beta blockers, now no one checked me for anything. I passed out one day at work so they sent me for an echocardiogram.  That didn't show mitral valve prolapse so they sent me the next morning to a cardiologist. I was put on a treadmill and within 3 minutes my heart was racing to 180. They pulled me off immediately. The sweet doctor said "I can't be positive but I think I know what is wrong with you, but you need a right heart cath." Okay this is getting scary but I was young, healthy, free of my horrible ex husband, there couldn't be anything bad.  A couple days later I had my heart catherization, my mom and pastor was there. Well, the weirdest thing happened- my mom acted as if she had been crying and said she was going home to take care of my 3 year old, my dad had him.  Weird, because my mom had never left me in the hospital alone. That evening my best friend came and brought me a beautiful long, lacey, cotton night gown.  So sweet- but unnecessary, I was fine. Then my brother dropped by with a hairbrush, magazines, and chocolate.  That should have sent off warnings but it didn't. Ignorance is bliss at times

The next morning the nurses came and took me for a pulmonary function test. When I got back to my room, my mom was there and my doctor. Mom had tears in her eyes and Dr. Fonenot said down on my beside and said " you have primary pulmonary hypertension ". I said "okay, how do we fix it?"  He said "we don't." I said "okay." He said "it's not okay, you will die in the next 2 years without a heart lung transplant." I laughed and pulled the covers over my head. I looked out from the covers at my mom and she was crying, my doctor was crying.  Okay- this is real.  All I wanted to do was go home and hold my son tight.

The doctor called the next day and said he had found a center that would do my heart/lung transplant in Birmingham Alabama. Wow. That close? About a week after my diagnosis it hit me, I was dying and soon. I cried a couple hours, got down on my knees and asked God to take care of my baby boy.  We scheduled the appointment with UAB in Birmingham for December and  my mom, dad, baby boy and I went to meet Dr. Bourge, the transplant doctor.  He agreed with my local cardiologist and scheduled me for a transplant evaluation for the first full week of January 1992

January came and all arrangements were made for my hospital stay that would take a week. The transplant team had made mom reservations at a hotel close to the hospital and even made arrangements for the hospital day care to keep my son during the day so mom could be with me.  We arrived on Sunday and found the daycare so mom wouldn't have any trouble finding it the next morning.  We found it easily enough but pulled up to the door and they had a sign on the door that they had chicken pox.  We had no choice, we had to leave him there and get exposed.  I was admitted and went through so many test, was told I needed to loose about 10 pounds because I needed to be the size of a 12 year old boy. The tests were never hard but always invasive. They drew around 20 tubes of blood a day. More radioactive tests than I can remember. My veins were so sore and I was so tired and got sick from all the dyes they used. Then on Thursday, the chaplain came in to see me, I had already seen psychiatrists, but they brought in the chaplain, he was one of my old pastors.  I felt so blessed and that I was doing the right thing. On Friday morning I had another right heart catheterization  and the most wonderful thing happened. My pressures were half of what they had been in November.  The Procardia was working. Yay!  The next day we came home with a plan. Low fat, low sodium diet and walking daily. I stopped dying and started living. I dropped the 10 pounds then 10 more. I looked and felt great.

My parents and my son and I spent a week at the beach just tanning, playing, fishing. Enjoying each other and life.  I was working again as a nurse and doing great. The death sentence hung over us but I wouldn't let it dominate me. The next weekend after coming home from the beach, a really good friend asked if I wanted to go out dancing on Saturday night, sounded good.  Mom and dad were watching my son. Well, I was coming out of her hall and this man walked in the front door and we just stared at each other.  He was a cowboy, I was a tiny woman with a big smile. We both will tell you- it was honestly love at first sight.

We started dating immediately and he was wonderful with my son. We had been going out a couple of months and my mom told me that I needed to tell him about my PPH (pah), so one night we stayed up all night and I finally got up the nerve to tell him I was dying and he held me and said " I already know, Ruthie told me".  My friend. Haha well we dated a while, I had a right heart catherization every 3 months.  Since there were no medications for pulmonary hypertension we had to keep a close eye on my pressures. 3 days before Christmas, Milton, my cowboy, took my son to see a movie in Mobile.  That night after I got off work, Milton asked me to marry him. I asked if he was sure because at the time we thought I only had 1 year left to live.  He said he wanted to marry me even if he only had 1 week left with me. We were married in June 1993.

I continued to have heart catherizations every 3 months. In 1995 I had a punctured lung during one of my heart Caths and I spent a week in the hospital with a chest tube. Horrible pain. I was still holding okay on my PA pressures, they stayed in the upper 40's.

Life was good for a long time, except for all those heart Caths. Somewhere along the line I was put on Coumadin and then lasix. Decided I didn't want to find a different doctor. Dr. Bourge and I didn't really get along all that well. I am a people person, he wasn't. Great doctor just not for me. So I was sent to Nashville and saw a wonderful PH group at Vanderbilt.  I had a bubble study there and they were convinced I had a hole in my heart and they could fix my PH. Wow!  After all this time we had hope. They sent me downstairs to a pediatric cardiologist who showed us what he would use to repair the hole in my heart. So the next morning I had an 8 hour long heart cath looking for a hole in my heart. After all that we were back to my original diagnosis of idiopathic pulmonary hypertension.  I couldn't keep going to Nashville, it was just too far away. So I found a doctor in New Orleans. The closest one yet.  I liked him and I had started getting worse. Luckily Tracleer had just come out so he added that to my calcium channel blocker.  That started working and I was doing better. Then he got an offer he couldn't refuse from Houston so he moved and I was without a doctor. I asked his nurse about someone and she told me about a Dr. DeBoisblanc. Thank goodness, he goes by Dr. Ben. We met and it was a perfect doctor/patient match. He was all about my quality of life like I was.

I started getting sicker again and he had heard about trials of Viagra, so we talked my insurance company into getting me Viagra. They sent me 3 months worth of that golden medication. Haha joke. I started taking it and the headaches were horrible, they just got worse and I started vomiting daily. Talked to Dr Ben and he said to stop taking it.  He was trying to keep me off IV medicines. Then sub-q Remouldin came out and he said. You'll love this. No IV. So my local cardiologist worked with him to get me the medicine. I went in the hospital to get started and trained on it. Everything was good for 24 hours and I got to go home. At the 25 th hour the site pain started. Oh no this is awful. On the 3rd day it got better, then I had to move it and titrate up my dosage.  Here we we again. The worst pain ever.  Then it would get better, then I'd have to start over again. It got so bad I started vomiting all the time again. I only got out of bed to vomit. It was awful. So 4 months of that and Dr Ben looked at me and told me to stop that medicine. He said this is not quality of life. Well then, Ventavis came out. Big bulky pro-dose machine that had to be plugged it. Every 2 hours I had to inhale the Ventavis   No side effects and between Ventavis, Tracleer and Norvasc I was doing great. Then we took a direct hit from Hurricane Ivan and were without power for a week. We had to use an inverter in the car so I could do my Ventavis every 2 hours.  Finally the little portable inhaler for Ventavis came out and I was one of the first people to get it. That made life so much easier.  I stayed on these medications until 2007. I started getting worse again. So as soon as Letairis came out I switched from Tracleer to Letairis .  The Tyvaso came out and my local cardiologist told me it was only 4 times a day.  So I changed from Ventavis because I felt like it would be easier for me. I responded really well to Tyvaso and loved how easy it was to me. I have beed on Tyvaso, Letairis, and Norvasc since 2007.

This is the year 2014 and in November that will be 23 years since I was given 2 years to live. I still have my original organs and hope I always will. I have still avoided IV medications but now there are 3 different ones available if the need arises

I still live my life to the fullest. I get tired more but I am now 53. So is it my PH or is it my age?  Who cares. I am going to live to be an old lady. My son is 26, I've been married to my cowboy for 21 years. I have cows, horses, goats, chickens, a cat and a wonderful Boston Terrier that is my little boy. Haha

*Editor's note: you might recognize Donna's story from my previous post where I posted this video of Donna who shared her PH journey with a local news station (video below.)

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