How this Couple Found Each Other Twice and the Challenges They Now Face


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In Philly on their 7th anniversary

The Bama’s. That’s what Belinda and Jimmy are known as in these parts by a mutual friend who introduced me to them not very long ago. I heard all about them; how nice they were, what their situation was, and of course that they were from Alabama. It was about two months ago when I first met the Powell’s (their actual last name) and it was clear why they were such a beloved couple. I had some knowledge of what was happening in their lives, but there was so much more. So, on this day of love, I thought it appropriate to bring you their love story and hope you’re inspired not only to spread some love, but to also help a very worthy cause and a great couple.
Thank you, Belinda Powell, for sharing your story and welcoming, with open arms, a second family and home in the city of brotherly love.

 

When did you and Jimmy first meet and where?
“We met at the boat harbor on the Tennessee river in Decatur, Alabama.”l

How old were you?
“I was 16, Jimmy was 20.”

Did you start dating at that time?
“Yes.”

Have you been together since?
“No.”

What separated the two of you?
“My Mother was a widow at age 23 with 3 children. When we got older, she decided to go to nursing school to make a better life for our family. When I was 15 we moved from Selma, AL to Decatur, AL when she received a grant to help with her nursing school tuition. I went to work and helped with my younger brothers and whatever she needed me to do. I met Jimmy when I was 16, we dated for 2 years…totally in love!! When my Mom graduated nursing school, there were nursing recruiters that came from all over Alabama to recruit nurses. My mother chose to go all the way to the opposite end of the state because that’s where she was offered the most money. I was 18 at this point in time and devastated…very upset with my Mom! Jimmy begged me to stay and marry him. He kept telling me ‘I was 18, I could do what I wanted’ but I didn’t feel like I could do what I wanted. I knew my Mom depended on me a LOT!! I couldn’t make myself do it no matter how bad I wanted to and no matter how heartbreaking it was for me and him; I just couldn’t make myself. He tried to get me to stay all the way up until the last night we were in Decatur before we drove off in the car and u-haul truck. So, we went our separate ways-married other people. He married someone that had 2 little boys that he adopted and loves just like he would have if they had been his own biological children. I also had 2 sons with my first husband. Many years went by and I found myself divorced after 22 years of marriage. When we reconnected, 27 years had gone by. It was crazy the way it even happened. I was going through my email account one night and ran across something called Classmates.com. Initially, I was looking to see who all from my school was listed on the website. I looked for a few friends and especially was looking for a very close friend named Tammy. I spent my last night in Decatur before we moved away at her house and Jimmy and I sat in front of her house in his car for hours talking and crying.
I noticed on “Classmates” that you could go to other schools and look people up. So, of course I thought about Jimmy and sure enough he was registered on the website! I couldn’t tell you how many times I started an email and deleted it but I finally hit the send button. The email was just a “How are you. How’s life treated you? Did you have kids?” And told him about mine. We emailed back and forth for a while, catching up on life. Then he asked in an email if he could call me and so we started talking on the phone some. Once we communicated through emails and phone calls we decided to meet each other for coffee. After we saw each other again it was like we picked up where we left off 27 years earlier. Almost one year after that we got married!”

So what year did you get back together?
“2003…married June 24, 2004.”

Things took a turn shortly after you were back together. Can you share what happened?
“Once Jimmy and I were reunited, I noticed that he wheezed a LOT. A whole LOT. I asked him what was up with all the wheezing and he replied “that’s just how I am”, to which I replied, “That’s not normal. What does your doctor say?” Jimmy then tells me his doctor said he had chronic bronchitis. So, the next doctors appointment he had, I went with him and he got his first inhaler which helped with his wheezing and he couldn’t believe how much better he could breathe. Time rocked on, Jimmy was asked to be in a study by his doctor which was a study on familial heart disease of men in the south. Jimmy’s doctor was also his Dad’s doctor who suffered from heart disease so his doctor thought Jimmy would be a good candidate for the study. Jimmy would just go by his doctors office periodically and get labs drawn for the study which was all he had to do. The screening process started for the study; first labs were drawn and came back: Jimmy’s liver enzymes were 4 times normal which eliminated him from the study but his doctor started trying to figure out why his liver enzymes were four times the normal level. While all this was going on, Jimmy and I were planning our wedding (we ended up getting married before we even found out why his liver enzymes were so high). Then, 4 months into our marriage and lots of labs and testing later, we found out why Jimmy’s liver enzymes were so abnormally high. We found ourselves sitting in the doctors office one September morning in 2004 being told that he had this rare genetic disease called Alpha-1 Anti Trypsin Deficiency…that there was no cure for and very little was known about the disease. The doctor went on to say that there was a treatment but it wouldn’t make Jimmy better and if he chose to take the infusions he could contract AIDS or HEP-C because it was a blood plasma product. Alpha-1 Antitrypsin Deficiency is a genetic disease that causes non-smoking emphysema and non-alcoholic Cirrohsis of the liver. We sat in that office and looked at each other, just like we did 27 years earlier, crying because we were going our separate ways only this time as newlyweds crying because of the unknown

What is happening now with Jimmy’s health?
“With the diagnosis of Alpha-1, Jimmy had to medically retire from GE Appliance in Decatur, AL and begin getting weekly infusions and regular appointments to see his doctors at Vanderbilt in Nashville, TN. For 7 years he was under the care of a hepatologist and pulmonologist that had experience with his disease. Even with the weekly infusions, Jimmy still continued to lose lung capacity. April of 2010 Jimmy’s doctors at Vanderbilt put him through liver transplant evaluation which they thought would cure him and stabilize his lungs. The end result was that he was told by the liver transplant surgeon he would never be able to get him off of the ventilator because his lungs were to far gone. This meant we would have to find a transplant center that did the combination double lung-liver transplant- a rare transplant that has only been performed less than 100 times in the world! So, our journey then led us to Penn Transplant Institute which began with our first appointment in October of 2010.
Jimmy went through the liver and lung transplant evaluation in December of 2010 and for the next 3 years we drove back and forth from Alabama to Philadelphia to see lung and liver transplant doctors every 6 months and between that, we went to Nashville to Vanderbilt to see doctors there. May of 2013 we were told to come back to stay (in Philly) to be listed. He couldn’t get the transplant at Vanderbilt because his lungs were too far gone, so had to find a place that did the combination lung and liver transplant.”

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The Gift of Life House

So, you’ve been in Philly since 2013? Where have you been staying and what is the status of Jimmy’s transplant?
“No, we lived at the ‘Gift of Life Family House’ from the summer of 2013 until Fall of 2014. Then the transplant doctors allowed us to go home and stay on the list if I could get air transportation in a 4 hour window to get him to Philly if organs became available. We would still come back and forth to see transplant doctors and get his tests done here in order to stay listed.

Jimmy’s Mother died while we were living at Gift of Life Family House and we had to Skype the funeral. His dad started going down hill [as well]. That was one major reason we wanted to go home-spend time with him which we did. He died April 2015.

We came back September 13th (of this year), thinking for a week of appointments and that’s when they found the Melanoma and we’ve been here since then.”

So now he’s battling melanoma! What does that do to his chances of getting the transplants?
“He is off the list for 2 years but will still continue to be under the care of both teams until he can be listed again. He’s high risk for liver cancer because of his disease so he is screened every 6 months with MRI for that.”

This has to be a tremendous strain….between him losing his mother while he was here and then losing his father, all the appointments and setbacks! Have you ever felt robbed, having all this happening after you finally found each other again?
“I would be lying if I said no but at the same time I’m thankful he’s still with me. I mean he is the LOVE OF MY LIFE!! I do what I have to do … A lot of things…between taking care of him, taking care of my Mother as well. She battled liver cancer for 2 years and I was her primary care giver (that was before we started the transplant journey. She was diagnosed in 2006 and passed away in 2008. And I had breast cancer in 2007).”

That is way more than one person should have to bear! You certainly have been put through the ringer. Yet, having met you a couple of times, you don’t strike me as someone that has let this all beat you down. What gets you and Jimmy through? What positives have you taken from all of this?
“Live each day as if it were your last!!! Learned that as a child… losing my Dad at age 6. It’s the way I’ve always looked at life. Know what is important in life, which to me are all the people you love. Relationships.”

That’s definitely a good outlook.
In the meantime, while Jimmy is being treated for the melanoma and awaiting to be put back on the transplant list, living at the Hope Lodge and not being able to work, there must be struggles, financially. What can people do to help?

“We are staying at Hope Lodge for Cancer patients. We will hopefully get to go home for a while soon but will have to still travel back and forth to see docs at Penn.
(Expenses include) Medical expenses, co-pays, traveling back and forth to doctors, medicine. One co-pay for his infusion medicine, that he gets weekly, is $200.

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Jimmy cooking for the Gift of Life House

Traveling back and forth from Alabama to Philadelphia, almost a thousand miles one way, for 3 years-sometimes staying in hotels for 2 weeks at a time depending on test, procedures and appointments is expensive. The medical/prescription costs are just part of it. Moving away from our home, lodging, food, transportation to ongoing medical appointments, etc, has created a financial burden that is impossible to imagine. Even at a reduced rate of $40 a night at the Gift of Life Family House -that’s $1200 a month for 15 months.

Jimmy will continue to be under the care of the lung and liver transplant teams and dermatology teams. Now, we will have to start traveling to Birmingham, AL to UAB to see lung transplant doctors there, in the event that Jimmy gets in trouble with his lungs and we have to get somewhere fast.”

Being Valentine’s Day, and having gone through all of this, what message would you want to give to people on this nationally recognized holiday about love?

“The message about love I would like to give people is simple……
A TRUE LOVE STORY NEVER ENDS.”

If you’d like to help the Powell’s, please click the link to make a donation. We thank you in advance.

 

https://m.youtube.com/watch?v=wYsaosI26oQ and https://m.youtube.com/watch?v=lCW0gutkGzs (to learn more about Alpha-1 Anti Trypsin Deficiency)

Previous stories about Jimmy and his journey:
http://articles.philly.com/2014-02-10/news/47171540_1_transplant-jimmy-powell-donor-program
http://6abc.com/archive/9520438/
http://articles.philly.com/2015-04-02/news/60724455_1_lung-liver-transplants-transplant-list-liver-donors

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