"The Summer When Everything Changed," by Linda Martin

In the summer of 2016, Linda Martin received a call from her husband that changed her life forever.

Transcript

It's almost hard to believe now, but the summer of 2016 was a game changer, a life changer. Everything in my life had sort of fallen into place.

The summer of 2016 was amazing. My kids were grown, I was an empty nester. My older daughter had two beautiful boys. My son had one beautiful baby girl. My younger daughter had just gotten married a few months before. We had just sold our company and my husband and I had gone to Europe for a celebration trip.

As we had planned, he went right to Florida to our home and I went to Chicago where I was so excited to babysit my new baby granddaughter.

So, I'm in Chicago and I had just put my baby granddaughter June to sleep, came downstairs to relax after the trip. I was a little bit jetlagged and the phone rang. It was my husband calling.

I was like, “Hi. It's great to hear from you. I'm having so much fun.”

And he said, “We have a problem.”

I was like, “How could we have a problem? We just got back from vacation. We couldn't possibly have any problems yet.”

He said, “Well, I just had coffee with Kim and Kim said that she had gone to the doctor with Amy.” Amy is our younger daughter. She had just gotten married, as I said, a few months before. Was doing great.

Amy was sick, so Kim had accompanied her to the doctor and came back. Amy had said, “Don't tell Mom. Don't tell Mom.”

True to her word, Kim did not tell Mom. Kim told Dad.

So Dad was calling me to say, “I've got some bad news.”

But we didn't even know what the bad news was yet. All we knew was that Kim said, “Dad, I went to the doctor with Amy. She has something called chronic pancreatitis, but that's not what I'm worried about. Dad, Amy is dying.”

I was just speechless. How could this happen? I had just seen her a few weeks before.

Then I thought about it. I had not seen her a few weeks before. I hadn't seen Amy for a few months. She had gotten married, she had gone on her honeymoon. She and her husband were busy and happy. I hadn't seen her for a few months, but, as far as I knew, she was fine.

And, suddenly, I'm back from vacation, I'm babysitting my granddaughter and she's dying? And what is chronic pancreatitis? I never heard of it. None of us had ever heard of it.

So, I said, “Well, we have to do something.”

My husband said, “Obviously, that's why I'm calling you. You are the someone who does things.”

And I said, “Yeah, but I don't know what this is.”

So, we hung up and agreed that the next day we would talk again when we could make some more sense of it and I could talk to Amy and reveal that her sister had told us what was going on.

And so I hung up the phone and I did what every mother does when she has no idea what's going on with her kids but she knows enough to be worried, sat down on the floor and I Googled.

I Googled chronic pancreatitis. What was it? How could she be dying? I found out that she might not be dying, but chronic pancreatitis was associated most commonly with alcohol abuse.

I kept reading article after article after article about alcohol causes pancreatitis and then pancreatitis evolves into chronic pancreatitis only in some unlucky people. Apparently, my daughter was one of those unlucky people.

I thought, “Well, I think I saw her have a glass of wine at her wedding,” and I know she occasionally has drinks. She's 40 years old. She's had a drink before, but she's not an alcoholic. She has never abused alcohol. This just didn't make any sense to me whatsoever.

I didn't sleep at all that night. I did a lot of Googling. I thought, “I just don't get it. I just need more answers. I need to find out who's an expert in this sort of thing.”

The next day, of course, I talked to Amy and my daughter Kim. Amy said, “I don't know. I've just been really sick, Mom. I've been so sick I just didn't want to tell you because you were so happy. You were going on vacation and I knew you were babysitting. I thought there's time. When you get home, I'll tell you that I haven't really been feeling very well.

But then Kim convinced me to go to the doctor and my doctor gave me a referral to a GI. We went to the GI. She took some scans and then she said, ‘You've got a big problem. You have what I think is chronic pancreatitis and you've had this for a really long time.’”

And Amy said, “So I said, ‘So what do I do,’ and the doctor said, ‘Just stop drinking.’”

And my daughter Kim said, “That's exactly what she said, Mom, and she said it even meaner than that. So we left and we were in tears and we didn't know what to do. And so chronic pancreatitis, and we need to do something.”

I said, “Okay. We're going to figure this out. There are people that know what this is all about. There are doctors who are specialists. We're going to find them, we're going to take you to them. I just don't know what to tell you. But, Amy, have you been drinking a lot?”

She said, “Mom, yeah, I drink occasionally. I have a glass of wine occasionally. You know I don't drink that much.” And she said, “I was so mad at the doctor. I said, ‘But I don't drink,” and she said, ‘Don't lie to me, young lady. Just stop drinking.’”

I said, “Okay, okay. We're going to figure this out.”

I was in complete stupor. I didn't know what to do. I kept Googling, I kept looking for where are the experts and it seemed like there were none. Where was the research going on? There was none. Where was there drug development going on? There was nothing. There was just article after article that said, “Alcohol causes pancreatitis and pancreatitis leads to chronic pancreatitis, which leads to diabetes and, eventually, to pancreatic cancer. There's a lot of pain involved and it's a debilitating disease that's progressive. There's no cure and there's no treatment. There's nothing you can do.”

So, we said, “Okay, this is who I am. I fix things. It's like there's a problem here. We have to solve the problem. We just have to find the people.”

So in my Googling, I had found a press release from a woman who said, “I think I'm going to start a nonprofit organization called Mission: Cure to find a treatment for pancreatitis. My brother has chronic pancreatitis. There are no treatments. There's no cures. We need to do something and I'm going to start a nonprofit.”

So, I got in touch with her and said, “I'm coming to New York to meet you.”

And I sat down with Megan Golden, who was thinking about starting an nonprofit, Mission: Cure and said, “I need to do this with you. I just sold my company. Nobody's doing anything. We have to do something. We have to find a solution for this.”

In the meantime, my daughter is getting sicker and sicker and sicker. She's in the hospital every few days and then maybe a week goes by, back in the hospital, back in the ER. They give her fluids, they give her pain meds and they send her home, say, “There's nothing we can do.”

So, we just continued down this path, trying to find somebody who is learning something, doing something, and, eventually, got in touch with a couple of doctors that were working on pancreatitis.

Eventually, I learned that the University of Minnesota in Minneapolis is the one institution in the entire world that treats chronic pancreatitis and had perfected a procedure called a total pancreatectomy with islet transplant that was a huge surgery to remove the pancreas and four other organs. It was the only treatment, and is today, for pancreatitis. There are still no drugs, no treatments, very little drug development pipeline, a little bit more research after the last seven years of Mission: Cure, but still no real treatments.

But my daughter was getting sicker and sicker. Amy was in the hospital, eventually went into sepsis. The doctor in the hospital said, “Do you know any place that knows any more about this disease, because there's nothing else we can do to help you? I want to just discharge you and you can go find someplace that can treat you better.”

Amy called me from the hospital and said, “Mom, I'm being discharged.”

I was like, “Oh, Amy, that's great news.”

She said, “No, Mom. They said I'm in sepsis. There's nothing they can do for me and they want me to go find someplace else.”

So I went and picked up Amy, we flew to Minneapolis and she got a full assessment there. Together, we sort of just wandered through a jungle of information that we had no idea what it was about, but eventually decided that this tremendous surgery was the only possible solution for what had become 24x7 nonstop pain.

In the ensuing time, Amy had lost tremendous amount of weight, was surviving on little Boost cans of protein drink. It was the only thing she could keep down. And she had no life. She had previously run a software company and had to go on disability, quit working because she was in bed, in pain 24/7, and losing weight and, as my other daughter said, about to die.

So she made this terrible decision that was to have these four organs removed in this total pancreatectomy solution.

In November of 2018, finally the surgery gets scheduled. Amy has the surgery and, ta‑da, no pain. She can eat anything she wants., It was a very long recovery, but life was back. Amy had a life again.

All of that is just amazing. It's like the highs and the lows. She's dying. No, she's not dying. I'm going to have to live with a disability all my life. No, I'm actually going to have to go find a job again. And how do I as a mom support all of these roller coasters of things going on in my daughter's life?

In the meantime, her husband left. Amy is all by herself now. So, we make it through all these things. And while chronic pancreatitis is not a death sentence, people don't generally die from it, it robs you of your entire life.

But Amy had this surgery, a surgery that's full of risk, left her as a fully diabetic and taking enzymes with every bite of food for the rest of her life, because the pancreas does two things: it makes insulin and it makes digestive enzymes. Without a pancreas, you need to do both externally, which she was doing.

But she was getting her life back, went back to work, when, suddenly, the complications started coming in. And because of years and years of misdiagnosis and a very long journey until she was finally diagnosed, she had had so much inflammation that she had robbed her bones of blood supply and had had to have two hip replacements, followed by complete and total kidney failure and is now back on disability and going back in to try to correct some of the scar tissue and other problems. Now, she's back into complete lack of ability to keep down food, vomiting back in the hospital, off and on, over and over again.

This story is one that has so many highs and so many lows. Through the last seven years, my daughter has gone through what seemed to be a cure, at least a treatment that took away chronic pancreatitis. She does not have chronic pancreatitis. She doesn't have a pancreas so she can't have pancreatitis. But it isn't a real solution.

We so need therapies. We so need to find pharmacological solutions so that children and adults who get pancreatitis don't have to go through this life‑changing surgery that is not a panacea, and shouldn't have to continue to live with the suffering, the digestive issues and the terrible pain with the only solution to go through this 15‑hour under general anesthesia surgery that doesn't end in Happily Ever After but just in some different manifestations and complications that Amy will have to deal with the rest of her life.

Thank you.