In this episode, Peggy interviews Beth Ades, who shares her compelling journey after being diagnosed with Myelodysplastic Syndrome (MDS) in 2021. Beth's story begins with mysterious bruises on her legs, leading to a diagnosis that required immediate hospitalization and numerous tests. Despite a harrowing seven-month diagnostic process, Beth was eventually diagnosed with MDS and was told her only chance of survival was a bone marrow transplant.
Beth recounts the emotional and physical challenges she faced, including a life-saving transplant from a 19-year-old donor in Germany. The connection between Beth and her donor has evolved into a meaningful relationship, showcasing the profound impact of such donations. Despite the difficulties, Beth's experience has been transformative, igniting a passion in her donor to pursue medicine and advocate for bone marrow registries.
Post-transplant, Beth faced severe side effects such as mucositis, which she describes as far more than just mouth sores, but a condition affecting her entire gastrointestinal tract. Her proactive approach and close communication with her medical team were crucial in managing these issues. This acute GVHD passed, but she still deals with chronic GVHD in her eyes.
Beth also shares the wisdom imparted by her social worker about the challenging transition back to everyday life. The first hundred days post-transplant were particularly tough as she felt isolated from her family's ongoing life. However, the experience has given her a new perspective, emphasizing the importance of acknowledging and dealing with these emotional hurdles.
The interview highlights the concept of paying it forward, which Beth embraced through organizing blood drives and bone marrow registry events. Her husband also became involved by signing up as a courier for the National Marrow Donor Program, (NMDP) reflecting their deep commitment to giving back. There is also a tribute race car in the works, yet another way this family is raising awareness on and off the track.
Beth's story underscores the collective effort required in the transplant journey, from medical professionals to supportive family and community members. Her reflections on gratitude, finding humor in difficult times, and the importance of small comforts, like warm blankets, offer valuable insights for others navigating similar experiences.
Beth concludes with an inspiring note on the transformative power of her journey. She appreciates the profound changes it has brought to her life, stating she would choose her transplant life over her previous one despite the hardships. Her resilience and positivity are palpable, leaving listeners with a sense of hope and the importance of community support in overcoming life's toughest challenges.
Resources:
Beth's Bone Marrow Journey Facebook Page: https://www.facebook.com/profile.php?id=100077793195673
NMDP (formerly Be The Match): https://bethematch.org/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Beth Interview
Speakers: Peggy Burkhard & Beth Ades
Peggy Burkhard:
Hello everyone. So, today we have with us Beth Ades of Iowa. So, Beth was diagnosed with MDS in 2021 and she is going to share more about her story. Welcome Beth, how are you today?
Beth Ades:
I'm wonderful. Thank you so much for having me here, Peggy.
Peggy Burkhard:
Well, we are really thrilled to have you. So, Beth, let's get started. Why don't you take us back to your diagnosis and transplant story?
Beth Ades:
It was Monday, May 17th, 2021, and I went into the doctor because I had been having bruises on my legs. I couldn't remember getting bumped or injuring my legs whatsoever, and the bruises weren't going away. It was a Monday morning and my doctor decided to run a full CBC blood work on me.
I went back to work and later in the afternoon she called and said, “Beth, I'm very sorry to tell you this, but your platelets are critically low, and I need you to go to a nearby hospital, a larger hospital. I have a spot reserved for you in the emergency room. You'll be spending the night, and in the morning, you'll be having a bone marrow biopsy.”
First of all, I didn't know what platelets even were and I said, “Oh, but I feel fine doctor. And my daughter has her first softball game and her arts festival tonight, so whatever test you need me, I'll just go tomorrow.”
And she said, “Beth, I need to stop you right here. What I'm telling you is that if you have a driver right now who can take you, you don't need to go by ambulance.” And so, that stopped me, and I was in sheer panic. I didn't know what any of this meant.
So, my husband rushed to pick me up and we drove the almost hour to the nearby hospital and got checked in and I spent the night and had my first bone marrow biopsy the very next morning. But the results of the bone marrow biopsy were inconclusive. They didn't point to any one thing.
So, we started with more and more testing. And during that time, not only did my platelets keep dropping, then other parts of my blood were dropping. So, my red blood count, my white blood count, my hemoglobin, all of those were dropping, which started then requiring me to get platelet transfusions and blood transfusions.
And I remember a conversation that I had with my dad so distinctly, he's a physician, and it was about two weeks after the first initial that something was wrong. And my dad said, “Beth, doctors are some of the smartest people in the world and hematologists are some of the smartest doctors, and there's a chance that they might not ever figure out what's going on with you.”
So, he explained that there's all these different blood cancers and blood diseases, and he made a reference to this large wall that all of these cancers and diseases could be. And he said with each test, they're narrowing their search just a tiny little bit to really hone in on what's going on.
And I think my response was something like, “Oh, it's been two weeks. It's been forever. I'm sure they're going to figure out any moment now what's going on with me.” But that wasn't the case. So, my doctors in Iowa soon referred me up to Mayo Clinic in Rochester, Minnesota, which is about two and a half hours away from my home.
And I met with a few different doctors and departments there and teams. And at seven months I got the diagnosis of MDS or Myelodysplastic Syndrome.
Peggy Burkhard:
Wow. So, it took seven months to diagnose you, huh?
Beth Ades:
It did take seven months. And let me tell you, that was a very lonely and scary time for me. And it was filled with emergency rooms and hospitalizations and transfusions all during the time. So, honestly, when I got the diagnosis, it was a relief. It was like, “Finally, there's a name to it.”
Peggy Burkhard:
Answers.
Beth Ades:
Yes. And so, after it was like, “Okay, there's a name, now what? Now what do we do?” And my doctor said, “Well, your only chance at survival is a bone marrow transplant.” They tested both my sisters; I have two sisters.
One was a match; the other was a half match. And then they also started the worldwide search. They found a perfect 10 out of 10 match in Germany. She was a 19-year-old and she said yes and donated her stem cells.
Peggy Burkhard:
That's amazing. Have you had the chance to meet her yet?
Beth Ades:
Not yet. We found each other's information out at two years and so, we email all the time. I would say maybe at least once a week. Actually, as we're recording this, today is her birthday, so she's turning 22 today.
And we have plans to meet, but there's a lot of logistics that go along with that. But I'm certain someday it will happen.
Peggy Burkhard:
Oh, my goodness. Well, happy birthday to your donor. This is incredible.
Beth Ades:
Thank you.
Peggy Burkhard:
I am guessing you two are going to meet.
Beth Ades:
I definitely hope so. I want her to meet me and my husband and my daughter and just see what she has done. And also, it's changed her life. She's in college and she's going into medicine. And she's been giving speeches at her college about getting on the registry. And so, it's had a huge impact in her life and her family's life also.
Peggy Burkhard:
Wow. Was she always going into medicine?
Beth Ades:
I don't know that for sure, but she said that she definitely felt the passion for it now. And actually part of her clinicals are through graft versus host disease patients. So, she's been seeing firsthand what some transplant patients have been experiencing.
Peggy Burkhard:
This is incredible. I love it. Thank you for sharing that. We don't talk about the donors enough sometimes, so I think it's such a great shout out and it's so important to remember that they're giving the gift of life.
This is great. I want to hear more about your donor in the months to come and keep us posted on that. Okay Beth? Maybe we'll have her on the show sometime. That would be really neat.
Beth Ades:
That would be awesome.
Peggy Burkhard:
Or maybe both of you together.
Beth Ades:
We'll be there.
Peggy Burkhard:
Great. So, Beth, we're going to move on. This season's all about the side effects of transplant. So, share with us some of the difficulties that you had. What are some of the areas that you struggled when you got home?
Beth Ades:
So, mucositis is something that I struggled with, and I do remember my transplant team telling me about mucositis. And I remember my initial thoughts were thinking, “That sounds uncomfortable,” mouth sores.
But I am here to tell you it is so much more than mouth sores. It literally starts at your lips and runs all the way through your GI tract. So, even after my conditioning and my transplant, I was released for about one week and then I was re-hospitalized for one week with mucositis.
Peggy Burkhard:
But you've got through it and is it a problem anymore?
Beth Ades:
It is not, no. It did heal up. It did take some time, but luckily as soon as it was to the point where I thought, I need to talk to my transplant team and tell them about this, they admitted me right away, which was really the best thing we could have done because we tackled it right away.
Peggy Burkhard:
Again, that importance of nipping these things early, it's a common theme throughout the season. So, Beth, the first hundred days, I am so intrigued by this, you mentioned the wisdom of a social worker, so let's talk about that.
Beth Ades:
Sure. My first hundred days, I lived in Minnesota, so I was in another state and luckily my mom lived with me during the week and then it was a change of guards. My husband took care of me during the weekend. So, I had wonderful caretakers.
But it was extremely difficult. I didn't see my daughter throughout that whole time for those 100 days. So, I was very excited to come home, and we had wonderful social workers and one of them told me, “You know, Beth, you're about to go out into a world that's figured out how to get along without you.”
And that was really hard to hear, but I did need to hear it because when you're in transplant after transplant, you're so consumed with everything that you need to do. Lab work, doctor appointments, transfusions, infusions, you're doing every single thing that the doctors want you to do. It is 100% your life. It's almost like a whole different world that you're living in for those a hundred days.
And so, when my doctor said, “Yep, you're well enough to go home, congratulations.” I came home and I realized that everyone else's lives continued on. Because they have to. That's the way that it goes. But I felt like mine had stopped.
So, for me it was a transition period to feel like I was rejoining basically the land of the living. And I hope that other listeners can know that that's okay if they're experiencing that same thing where you feel like my life has stopped and everyone else has had continued, that's completely normal from what I experienced.
Peggy Burkhard:
What a great reminder for people so that they don't feel alone in that. I'm just imagining how your daughter felt when she saw you. That must have just been the best. How old is your daughter?
Beth Ades:
Now, she's 15. So, she was 13 at time of transplant. And I did get a weekend release to come home over Mother's Day and that was … oh, that was so special. That was the best Mother's Day ever.
Peggy Burkhard:
And it probably will always be the best Mother's Day ever, I'm sure.
Beth Ades:
Agreed. Yes.
Peggy Burkhard:
Oh, Beth, I love your energy. Thank you so much. So, you did struggle with some graft-versus-host disease, is that correct?
Beth Ades:
Yes, that is correct.
Peggy Burkhard:
How has that been for you?
Beth Ades:
So, I've had both acute and chronic GVHD. So, I had acute GVHD in my liver and on my skin. But again, it was telling my doctors right away, “Hey, I have a little rash with bumps on my legs.” And they got me into a specialist right away who got me on treatment. So, we did nip that right away.
However, the liver, it lingered for a bit, which also delays getting off the anti-rejection medicine, which also delays being able to get your vaccines. So, it was at 18 months when I started getting my vaccines. And actually, last week I just completed the last of my series for vaccines.
So, we celebrated hard with getting those vaccines. So, as far as acute, that's where it stopped. But I do have chronic GVHD in my eyes. The oil glands in my eyelids have stopped working, but I've worked with my GVHD ophthalmologist, and we have a really great plan.
But I have to tell you that if I even miss one of my treatments, my eyes let me know it. So, it is definitely probably going to be a lifelong issue, but it's manageable.
Peggy Burkhard:
We hear that often. You're not alone in that. It's very common. So, Beth, when I met you, oh, I love this. You had talked about this need to pay it forward, we do hear this often. In your village of support, will you address that for us, please?
Beth Ades:
Of course. So, for the first time in my adult life, I was on the receiving end of help, and I needed help with everything. From chores and groceries to blood and everything and stem cells and I really felt a lot of guilt with that. I just felt like I had put so many other people out or put hardships on them.
And so, when I got home after my 100 days and I started feeling better, I really felt like, “Oh, I just need to pay people back.” And I was wearing myself out trying to do that and trying to think of different ways to do that.
So, I needed to shift my focus and pay it forward rather than paying anyone back. And we've done lots of different ways to help pay it forward. So, on my first re-birthday and my second, I hosted a blood drive with a bone marrow registry event. So, that was really, really rewarding to be able to do that, to help all those others.
I needed more than 70 transfusions and I know that there's a huge need and shortage of blood. And so, to be able to be able to live long enough and to celebrate that and help the next person that needs the blood was really special to me.
Also, my husband just signed up to be a courier with the NMDP, so that means that he will physically transport the transplants whenever and wherever he's needed. So, that training will be sometime later this year. But he loves to travel and so this is a wonderful fit for him.
Peggy Burkhard:
Wonderful.
Beth Ades:
And another thing that we're doing is my husband drives a race car as a hobby. And so, this year we decided to do a tribute car to both LifeServe, who is the blood donation centers in Iowa, Nebraska, and South Dakota and also, to the NMDP because without all of these people, I wouldn't be here today.
So, we are just trying to raise awareness and educate people with things that we're already passionate about like racing. So, the car actually just got done and we're ready to get it on the track very soon.
Peggy Burkhard :
I love this. We're going to have to have a picture of that car somehow in the show notes or a link so that people can check it out, wow. And as far as the courier goes, I know someone that does that, and it is super rewarding.
She's done it several times. I've actually thought maybe someday I would like to do that. I think it is just an incredible gift to do that for someone. And to be on that plane with those cells, maybe your husband could share with us after he's got a few under his belt what that experience was like.
Beth Ades:
He would be happy to, he's so excited to start this. And it was something that I didn't realize that was done for me, that every single transplant as it's being flown, that someone is physically holding onto that for you, which is incredible. And I hope someday I can find out and maybe meet my carrier for my stem cells.
Peggy Burkhard:
Yeah. What a great idea. This is terrific.
Beth Ades:
There's literally been hundreds of people that have helped me live to today between the doctors, nurses, hospital staff, insurance angels, other transplant patients, my family, my friends all the community, everyone behind the scenes that makes it run smoothly. I want to say a huge thank you because it does take a huge village.
Peggy Burkhard:
That is for sure. So much good in the world, the ripple effect. We sure need that these days. Could you share with listeners what you strive to do post-transplant?
Beth Ades:
Sure. The ripple effect. I am so inspired when I learn of someone who decided to donate blood for the first time or those that have shared with me that they joined the Bone Marrow Registry. A friend of mine just donated her hair, another is crocheting hats for cancer patients. And I just think about the ripple effect.
So many of the times after we do something positive or volunteer, we don't hear about the person that receives it. And so, there's a huge ripple effect, I believe, with any good that we do. And I just feel that there's so much good in the world.
Peggy Burkhard:
Beth, you are a burst of inspiration today. I think we all need this, and we so appreciate you, Beth. So, Beth, I want to hear more about pearls. This is an interesting thought. I never knew this. Share please.
Beth Ades:
Well, Peggy, you asked me for my pearls of wisdom, and I just had to literally take it to pearls. So, I am pretty much obsessed with pearls ever since my first pearl party in the fifth grade. But now for the first time, I feel like I really understand them.
An oyster that has not been wounded does not produce pearls and a pearl is actually a healed wound. So, I feel like this is so representative in the transplant world. That grit that forms its way into a pearl.
The transplant patients, we are all made up of that grit. Whether we knew that we had it in us or not, we definitely do. And so, now we get to enjoy that pearl after transplant, which is this gift, this life that we've been blessed with.
Peggy Burkhard:
That is terrific. Thank you for sharing that. I did not know that, and I learned something new. So, Beth, tell us how life is different today.
Beth Ades:
Wow. There really is not one area of my life that hasn't been touched since my transplant journey. If I'm going to be completely honest, I would choose transplant life any day over my previous life.
Peggy Burkhard:
Huh. Okay. Explain that.
Beth Ades:
It was hard. It was very difficult. I'm not going to say that it wasn't, but it's so rewarding. I see things differently now, and I appreciate so many things. I just completed a virtual 5K race a few weeks ago, and I used to be a half marathon runner. So, a 5K really used to be a warmup for me.
But to be able to take those steps now is so rewarding. I think back to all the days in hospital beds. And after transplant I was so weak where I couldn't walk. I was in a wheelchair for weeks, and now I'm out running. It feels fantastic.
And every time I am out on the trail, I think about all those hard days. And about, boy, if I would've known at that point on those really tough days that I would be out running on the trail again, it would've just really changed things for me. So, I'm very grateful.
Peggy Burkhard:
And I'm sure someone listening is going to realize that they too will be in your spot soon enough. We hear a lot about the fatigue. Was the fatigue real rough for you?
Beth Ades:
It very much was rough. I was already just so depleted the months leading up to transplant, just being so low on blood. Where I couldn't do a flight of stairs without blacking out. So, I was already pretty low to begin with. And then after transplant, I was very weak, and I had so much fatigue.
It was maybe five weeks I was in the wheelchair where I just didn't have enough strength to even walk. But slowly but surely, well, the first day, we walked out to the end of the driveway and back and then to the end of the street and back.
So, it's really focusing on getting in those steps as much as possible, especially on the days where you feel, well, not overdoing it but also trying to be as active as you can.
Peggy Burkhard:
And being kind to yourself on the days that you're not feeling it. Was that hard for you to do as a mom? Were you able to take the breaks that you knew you needed?
Beth Ades:
Well, that's a good question. I didn't allow myself to take those breaks. I really pushed on, which of course then furthered the fatigue. So, that's I think, one thing, listeners: it's okay to take the breaks, to take the naps, be good to yourself.
On the really hard days, another thing that I did is I would … before I went to bed at night, as I was saying my prayers, I would focus really hard on finding three good things that happened that day. Some days that was a challenge, but I could always find three.
Because I knew for myself that if I was focusing on the negative, that was such a slippery slope for myself. So, I do that even to this day, I'm still focusing on at least three things that went well for the day, three victories. So, that's another thing that I believe in, and I strive for each day.
Peggy Burkhard:
Beth, it shows in your attitude. I wish that everyone could see your beautiful smile and just the energy that you bring forward, you are really something. Thank you so much for everything. Any parting words? I think you gave some great pearls. (laughs) Anything else as we wrap this up?
Beth Ades:
One thing that my family and my caregivers and my friends, we tried hard to find some humor each day. I think it was Gilda Radner that said, “Humor equals tragedy plus time.” So, we tried to keep things light and fun as much as possible that really helped get us through on the hard days.
Another thing, one of the small luxuries in the hospital is warm blankets. I feel strongly that if someone offers you a warm blanket, that you always take it. I told my husband, “When we get home, we need one of those blanket warmers.” Because it was the one thing that I always looked forward to on those hospital days was those warm blankets.
Peggy Burkhard:
And did you get one when you got home?
Beth Ades:
He got me a heated blanket, so he's still pretty good to me. I'll take it.
Peggy Burkhard:
That works. Beth, well thank you so much. It has been such a pleasure talking to you. And I want to stay in touch on your donor and the race car and everything else. Thank you.
Beth Ades:
Wonderful. It would be my pleasure to stay in touch with you, Peggy. And I just want to thank the National Bone Marrow Transplant LINK for the opportunity to share my story with you today.