Inspiring words from Trudy Seidel, a PHriend. Trudy is an amazing woman who raises thousands of dollars for PH research, so little is known about the disease except that it is almost always fatal. I wanted to say that Trudy works tirelessly for the cause, but there is no such thing as tireless when you have PH - tired is a way of life. God bless you, Trudy.
Idiopathic Pulmonary Arterial Hypertension and I have been enemies for 2 years today.
Realistically, IPAH had entered my life 18 months prior to this 2 year anniversary. Even more accurate is April 20th, the day I was given the diagnosis of the incurable disease PH (Pulmonary Hypertension). That day means little to nothing to me.
April 15, 2012, was the day I left Vinton, Iowa, by ambulance headed to the University Hospital. 2 years ago today, I left my 4 children, 2 of which were only 1 1/2 years old and 13 years old. I was taken away from them not knowing if I would ever see them or hold them in my arms again. I was so scared and I couldn't get my prayers to God, I felt blocked.
I've been through a lot of unpleasant and scary things, but this was beyond words and I couldn't grasp logic in the fear. I then spent a week not knowing what was wrong or if I was going to live. Then, 5 days later at 11pm, I was told that indeed I was dying, but with treatment I could buy time. My doctor later told me had I waited even 2 more weeks not seeking medical attention, my chances wouldn't have been good and most likely nothing would have worked.
I was released after 2 weeks with a tube coming out of my chest with an IV pump hanging from it. My mom, Bonnie Deutsch, who had sat tireless for 2 weeks at my bedside, witnessed things no mom should see or hear, called constantly on my sister and family to pray and heal me. Without her in my life today, it wouldn't be as livable as it is.
The night I was released my sister and 2 girls came to TAKE ME HOME, well, to my sister's home so she could help me and just be with me, because I needed her. Only about 18 months earlier she also picked me up again from a hospital, when she and my brother in law, my nieces, and daughter Jacey came to take me and newborn Jolie home with them. My sister again knew I needed her. Life is crazy, that was a lot more fun than this more recent hospital discharge.
I was so happy to be alive as my pump of life made noises, I cried off and on as we drove to her house, she's my logic, my person to shoot life straight for me and keep me going, she's my sister, Shawna Kurth. She married an amazing man, Tim Kurth, who had to deal with me the first morning of waking up being out the hospital and starting my new normal. He walked in his daughter's room where I had been sleeping, I was in tears with my medicine bottles in front of me, my pump next to me and I said, "I don't want to do this, I don't know how". He just held me and let me sob for a long, he's my 'strong tower'.
Later, I went home with my girls and new normal and tried to figure out this new life I had been given. I'm still not sure of my new normal as it changes a lot or what all this new life holds for me, I don't think it's for me to figure out anymore.
I'm at a place today that I'm okay with really, I'm not always happy and I still feel sick a lot, but it's livable. I've thanked God many times for my life, for letting me stay with my family longer, I've even thanked him for PH in a way, it's shined a new light on me.
I am only able to feel this way about PH, because of a man who fought so hard against PH. I read and seen a write up about Annie Whitaker's son Tim. This man, this angel was whom I wanted to become. I wanted to see the world through his eyes. Tim had already passed away, when I had read about him, but i see him in my mind so clearly.
The afternoon I read of his story, I honestly thought I can't ever get to that point. Granted, I was only a few weeks into the diagnosis and at home alone with a 2 yr old. I'm sure at that moment I walked by my computer, I had just come from getting sick in the bathroom for my 100th time that day.
His story just came, I had gotten lost in a site and he was just there so I read all about him, his hospitalizations, medicines and meds he couldn't get in Australia or that cost so much. I read of Annie's grief in trying to help, more trying to save him as a mom would. He was so close to his family and there was so much love going between all of them.
Tim wasn't a complainer, he was a fighter, a survivor for a long time against PH. He lost his battle to this horrendous disease, but it wasn't just his fight, his mom is still hot on the fight against Pulmonary Hypertension.
Annie is not alone in this fight, it's our fight, it's everyone's fight who has PH, its every person's fight who loves or cares for someone with PH. It's a fight that we won't lose, we are rare, but we are strong and United in the battle for our lives.
Happy Anniversary PH, I'm still here fighting and I am so much better than I was at our last Anniversary, but not as good as I will be on our next Anniversary.
Please visit here amazing testimonies of Heaven and Healing, and more info on PH.
The picture on the left is Aubrie Starr, the one on the right is Alexah. Both are far too young to have a fatal disease like PH, but they do. There is no cure for PH short of a heart/lung transplant and by the time you qualify for that, it is often too late.
Please pray for a cure for PH, pray for Trudy, and pray for these two precious little girls. #PH
Idiopathic Pulmonary Arterial Hypertension and I have been enemies for 2 years today.
Realistically, IPAH had entered my life 18 months prior to this 2 year anniversary. Even more accurate is April 20th, the day I was given the diagnosis of the incurable disease PH (Pulmonary Hypertension). That day means little to nothing to me.
 |
| My wife, Pat, and I in shirts designed and marketed by Trudy |
I've been through a lot of unpleasant and scary things, but this was beyond words and I couldn't grasp logic in the fear. I then spent a week not knowing what was wrong or if I was going to live. Then, 5 days later at 11pm, I was told that indeed I was dying, but with treatment I could buy time. My doctor later told me had I waited even 2 more weeks not seeking medical attention, my chances wouldn't have been good and most likely nothing would have worked.
I was released after 2 weeks with a tube coming out of my chest with an IV pump hanging from it. My mom, Bonnie Deutsch, who had sat tireless for 2 weeks at my bedside, witnessed things no mom should see or hear, called constantly on my sister and family to pray and heal me. Without her in my life today, it wouldn't be as livable as it is.
The night I was released my sister and 2 girls came to TAKE ME HOME, well, to my sister's home so she could help me and just be with me, because I needed her. Only about 18 months earlier she also picked me up again from a hospital, when she and my brother in law, my nieces, and daughter Jacey came to take me and newborn Jolie home with them. My sister again knew I needed her. Life is crazy, that was a lot more fun than this more recent hospital discharge.
I was so happy to be alive as my pump of life made noises, I cried off and on as we drove to her house, she's my logic, my person to shoot life straight for me and keep me going, she's my sister, Shawna Kurth. She married an amazing man, Tim Kurth, who had to deal with me the first morning of waking up being out the hospital and starting my new normal. He walked in his daughter's room where I had been sleeping, I was in tears with my medicine bottles in front of me, my pump next to me and I said, "I don't want to do this, I don't know how". He just held me and let me sob for a long, he's my 'strong tower'.
 |
| Trudy (right), sister Shawna (left), and brother Josh |
Later, I went home with my girls and new normal and tried to figure out this new life I had been given. I'm still not sure of my new normal as it changes a lot or what all this new life holds for me, I don't think it's for me to figure out anymore.
I'm at a place today that I'm okay with really, I'm not always happy and I still feel sick a lot, but it's livable. I've thanked God many times for my life, for letting me stay with my family longer, I've even thanked him for PH in a way, it's shined a new light on me.
I am only able to feel this way about PH, because of a man who fought so hard against PH. I read and seen a write up about Annie Whitaker's son Tim. This man, this angel was whom I wanted to become. I wanted to see the world through his eyes. Tim had already passed away, when I had read about him, but i see him in my mind so clearly.
The afternoon I read of his story, I honestly thought I can't ever get to that point. Granted, I was only a few weeks into the diagnosis and at home alone with a 2 yr old. I'm sure at that moment I walked by my computer, I had just come from getting sick in the bathroom for my 100th time that day.
His story just came, I had gotten lost in a site and he was just there so I read all about him, his hospitalizations, medicines and meds he couldn't get in Australia or that cost so much. I read of Annie's grief in trying to help, more trying to save him as a mom would. He was so close to his family and there was so much love going between all of them.
Tim wasn't a complainer, he was a fighter, a survivor for a long time against PH. He lost his battle to this horrendous disease, but it wasn't just his fight, his mom is still hot on the fight against Pulmonary Hypertension.
Annie is not alone in this fight, it's our fight, it's everyone's fight who has PH, its every person's fight who loves or cares for someone with PH. It's a fight that we won't lose, we are rare, but we are strong and United in the battle for our lives.
Happy Anniversary PH, I'm still here fighting and I am so much better than I was at our last Anniversary, but not as good as I will be on our next Anniversary.
Please visit here amazing testimonies of Heaven and Healing, and more info on PH.
The picture on the left is Aubrie Starr, the one on the right is Alexah. Both are far too young to have a fatal disease like PH, but they do. There is no cure for PH short of a heart/lung transplant and by the time you qualify for that, it is often too late.Please pray for a cure for PH, pray for Trudy, and pray for these two precious little girls. #PH
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