News : Life-changing effort: How \'Pray PHor a Cure\' event is affecting Trudy Seidel

These are some of the live auction items for the Pray PHor a Cure event this Saturday.

The VS Vikings basketball team signed this glow basketball for the Pray PHor a Cure auction.

The Chicago Bears sent this photo for the live auction.

A variety of PH bracelets will be available during the Pray PHor a Cure event Saturday.

A photo of NASCAR Kasey Kahne is among auction items.

The Dallas Cowboys donated this basket; a Scheel's gift card is included.

Some of Trudy Seidel's 'PHriends' will join her at the Pray PHor a Cure event.

This is one of the items for the Pray Phor a Cure live auction.

Silent Auction: This collection of items can be bid on Saturday.

Two days before this Saturday’s “Pray PHor a Cure” fund-raising event that has already grown much larger than she ever dreamed, Pulmonary Hypertension patient Trudy Seidel of Vinton took a few moments from her busy week of arranging items for the auction and garage sale to share more of her story with Vinton Today. She also shared some thoughts about how her rare disease and the past few months in the spotlight have changed her life.

“It’s been an amazing adventure. I never planned for the event to be this big,” says Trudy. “I thought we would have an average-size garage sale with my aunts making some baked items.”

Instead, the response from friends, family, the Vinton community and several eastern Iowabusinesses has transferred Saturday’s event into a huge all-day fund-raiser with an auction of several unique items beginning at noon. Trudy and her family have so many items that they are now using part of a second building at the Benton County Fairgrounds.

A hand-made playhouse, picnic table and hope chest, countless craft items, gift cards, gift certificates, overnight stays at Iowahotels, and many more things will be available during the auction that begins at noonon Saturday. Many more items have arrived for the all-day garage sale. “Pray PHor a Cure” t-shirts have gone all over the U.S. and even into several other countries, including Canada, South Africa, Australia and Puerto Rico. Bracelets representing the event have also gone to many states and countries.

Need for PH awareness

The money raised will go to the awareness and research projects of the Pulmonary Hypertension Association, but Trudy’s other main purpose is to raise awareness of the disease among people who have never heard of it.

Trudy wants people to understand why she (and other PH patients) are using chest catheters and other devices just so they can continue breathing.

Being at the center of this effort has forced Trudy out of her comfort zone – and is pushing her into a new comfort zone as a spokesperson for a rare disease that has made Trudy the object of many curious stares.

“I'm not one who likes to talk about myself, especially if it’s not fun,” says Trudy. “And for sure I am not someone who likes to be asking for help.”

Trudy was full of self-doubt when she began planning Pray PHor a cure.

“My No. 1 question to myself was always, ‘Am I worth their time and energy?’” Trudy says. “Can I share the story of my disease? Is it important enough? It's not a disease anyone knows about, so I have to combine the facts that this is real, and that PH kills.”

A private person before her PH diagnosis, Trudy asked herself the question: “Do I have to open up more?”

She already knew the answer: Yes.

“I knew sooner or later the story would come to you or my mom would ask for it to be in the paper,” says Trudy. “That was a big step to take.”

Trudy’s first real public presentation was a profile in Vinton Today on April 4.

“Reading my story in Vinton Today was very nerve-wracking for me, knowing that more people would know this about me, even though that's what I'm fighting for – it’s crazy, reading my story through someone else’s eyes; it makes it even more real.”

Trudy struggled over the question of sending her story to area TV stations (she was featured as “Someone You Should Know” on KWWL this week).

“I knew that if they accepted my request, it may not be possible for me to make it through their interview – when my anxiety gets out of control, it affects my PH, which increases my side-effects which in the end could put me in bed for days. I knew that chance was high, but I prayed and prayed,” she says.

Trudy’s whole family, including aunts, cousins, mom, sister, and brother, along with all of her friends and “PHriends” – fellow PH patients whom Trudy has met in the past year – also prayed.

Trudy said that for the KWWL interview, it helped only Danielle Wagner and no one else was there.

“Well obviously I talked fast, but I usually do,” Trudy recalls about her time in front of the camera. “There was so much I wanted to say; it was like my brain was in a horse race. I was really nervous before, but it got better during the interview; I could tell that I was finally able to say what I wanted and I felt relieved that my words and message about PH were going beyond BentonCounty.”

Her time as a spokesperson for this rare disease has given Trudy a renewed confidence and sense of purpose.
“It's been a year since I have felt worthy, or felt I had a place in the world – or maybe I had just lost my sense of pride in myself,” says Trudy. “When even the smallest things or abilities are taken away from you, you don't value yourself so much. I wasn't an active member of society or even in my home.”

But now, she says, “That sense of accomplishment has come back, and it’s a great feeling. Because of my lung disease, I have to try a hundred times harder now than others, so to me the smallest of small victories are huge.”

Regarding the fund-raiser and its mission, Trudy says: “Things fell into place so easily, things that were hard to do but they came easy. I think I've made some great steps in providing awareness in Vinton and surrounding towns. I hope local medical clinics and employees can learn and understand what PH is and they can be able to help us, instead of making us feel alone when we walk in a clinic and have to explain PH to each new person who has no idea what it is or how to treat it. At least maybe they will be open to learn what PH is and give me some respect as a PH patient that I do know what I’m dealing with, that I'm not making it up, that they can't see that I am sick even if on the outside I don't look sick, and acknowledge or try and learn from it. PH isn't going away, its here to stay – there are more than 30,000 of us, although the doctors just haven't diagnosed all of them yet.”

Living with PH

“I've had anxiety issues for some time, but this last year they have tripled. I used to be concerned with people seeing my chest and catheter – I did and still do get a lot of stares. But it's OK now, it no longer matters how people perceive me based on my medical devices. I have come along way since last year, when I was so embarrassed that I had the catheter and an IV pump bag. Don’t get me wrong – it’s not fun to carry all the time but I'm more used to it now.”

While Trudy says that some PH patients are not healthy enough to do what she has done in the past few months, she is doing very well, thanks to her medicine and her support team.
“Right now I feel good enough to help myself and help the others who suffer from this.” says Trudy. “My accomplishments were much bigger than I ever expected, but my mom, Bonnie Deutsch, and my sister, Shawna Kurth, have kept pushing me. Since January, they have lived, breathed and slept Pray PHor a Cure with me. It's been a lot for the three of us.

Recently, Trudy’s aunts and uncles joined the crew, and her dad has gotten even more involved. Many other people have also joined the effort.

“Friends have come and surrounded me with love, help, and support, and people I didn’t know have given to me,” says Trudy. “I've witnessed a lot of good in people. The world may be looking like a harsh place. It's just seems that all the good ones are in Iowa, in Vinton. The love and compassion for another human being is here. You just have to look for the good in people.”

Many helpers, much faith

When she first asked a few family members and friends if they wanted to be included, Trudy explained her health issues and how with her disease and I needed help to do it. “There was no chance that it would work without help, not even a small chance,” she said. “I knew my message to them on Facebook had to be real.

That meant that her story “had to be the whole truth – the unpleasant parts had to be shared...along with my tears. I today still get emotional trying to tell others what, why and how this happened and see if they will help.”

While thanking her family and friends, Trudy also repeatedly thanks God for his help.

“Because of prayer I made it, actually we all know that prayer and our Savior is why I'm still here – God wasn’t ready for me to go to Heaven yet. He had some work for me to do. I believe I'm here today to bring PH to the surface to give it a name – maybe even just in Vinton or BentonCountyor central, IowaI'm not sure. What I am sure of is this: By the Grace of God there hasn't been one major or really even a minor complication or health problem that has come up.

Looking forward to breathing easy again

Trudy remains optimistic, but does say she will enjoy next week when she can rest from the long hours of preparing for Saturday’s event.

“One of these days I will ‘breathe easy,’ again. “I just have to have wait,” Trudy says. “This event will soon be over and I can recuperate, but I will continue my fight against PH every day. I have a long fight ahead of me. I have to fight for my life and for each breath I take.”

Trudy: ‘Always a fighter,’ says sister

Shawna Kurth has stood with Trudy through a variety of difficulties, including the Flood of 2008 and the wind storm of 2011. She has been a main part of Trudy’s support team since her PH diagnosis 13 months ago.

“My sister has always been a fighter – not in the physical sense but in the fact that life hasn't always been easy for her,” says Shawna. “She has had to overcome a lot of obstacles in her life that others haven't been faced with. For 43 years she has fought many uphill battles. Then last April PH came into her life. Now not only does she have to deal with the challenges that life and 4 kids give her, she now has to fight to survive.”

With her faith and help from family, Trudy has always been able to deal with challenges head-on and rise above them, says Shawna.

“But PH is a different challenge. It's not one that she or her family can change on our own. It's a disease that was misdiagnosed in her hospital visits – a disease that took the Universityof Iowa13 days to diagnose. It's a disease where treatment is still new, where there is not a cure. It's a disease that is bigger than Trudy is. My private 'fix it myself' sister can't fix this. She stepped WAY out of her comfort zone in organizing the Pray PHor a Cure fundraiser.”
Shawna has seen first-hand how difficult is has been for Trudy to adjust to having PH, especially while raising four children including infants.
“It's been really hard for her to leave the house this past year,” says Shawna. “During the day she is home alone with her little girl, who was 1 1/2 when Trudy was diagnosed. It's a hard age to parent when you are healthy.”

Shawna also describe’s her sister’s daily PH routine:

“Trudy wears a 'pack' 24 hours a day with an intravenous line going into her chest. Many times her daughter would run up and hug Trudy and smash into her chest. She has to carry her pack everywhere she goes. It's in the way when she cooks, sleeps, showers, hugs her children, etc. She mixes her IV medication every day and has a back-up mixed and kept in the refrigerator. She is not allowed to leave her property without the pack she wears ANDthe spare pack/bag in the event the one she is wearing fails. The spare pack must also be kept cold which requires ice packs. Between the energy it takes to get the medication ready, not being able to breathe when she walks more than a couple hundred feet and not feeling like she could protect her daughter if needed in the outside world, it's far easier to stay home. Unless you are close to our family, you would not have known she was sick.”
Despite these challenges and restrictions, Trudy had to get out of the house to share her story – and the story of PH patients – with the Vinton area, says Shawna.
“In order to bring awareness and raise funds for treatment and hopefully a cure, Trudy had to let her hometown of Vinton know she was sick with an incurable disease,” says Shawna. “She had to step out on faith that our community will rally around and love her enough to help her fight this fight. Once she started to inform others about Pulmonary Hypertension, she could no longer pretend things could ever go back to normal. It took a year of sadness, anger, fear, and lots and lots of feeling sick for her to remember how strong she really is. She has reached out to the PHAand through Facebook networking found others who are fighting this same fight. She now no longer feels isolated and alone in battling PH. Trudy has contacted PH warriors around the world and made a video that will be played at the fund-raiser to help people put faces to the names of her PHriends. She has met other Pher's who are coming to the fundraiser, from Arizonato Iowa; Iowa City, Mason City, even Brandon. There are other Iowans who thought they were alone in this until my sister brought awareness.
“PH has changed my sister. While she can't physically control her body and her daily PH symptoms, she can control how she reacts to it. Instead of allowing PH to define her, she is defining it. Since being diagnosed she is far compassionate and loving towards others. She is willing to come of out her comfort zone to fight for herself and for all the other PHriends she has made along the way. More important than all that, having PH has increased her trust in the Lord. While we don't know why He chose this journey for her we know He is always good and faithful. Not only is she fighting for a cure, she is giving the Glory to God which ultimately is what our lives here are all about. As hard as life with PH has been, PH has also blessed her beyond measure.”