Tips for managing your medicines after transplant

Posted January 9th, 2017 by Be The Match and filed in Patient Stories
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Taking your medicines as directed after transplant is important for your health, but it’s not easy to do.

Calley and Greg, both transplant recipients, knew that taking their medicines correctly and on time was very important. We talked with Calley and Greg to find out what worked for them.

Ila Saunders, PharmD, BCOP, sees many of the struggles people have managing medicines after transplant. We also talked to Ila to get advice from her on behalf of the Advocacy and Policy Working committee of the American Society for Blood and Marrow Transplantation (ASBMT) Pharmacy Special Interest Group.

Consider the following tips, and pick which ones work best for you.

Tip 1: Use a pill case that fits your needspills-2_260x150px

Depending on your health and treatment plan, decide whether a daily or weekly pillbox is best. Sometimes after transplant people have prescriptions that change frequently. This may be especially true in the first few months after transplant, or during treatment for complications such as graft-versus-host disease (GVHD). If your prescriptions are changing often, then a daily pillbox may be best. “You have to fill a daily pillbox every evening and you’ll be better organized when there are frequent changes to your medicines,” Ila says.

Calley had her transplant 2 years ago and now she uses a large weekly pillbox. She says this is the main way she keeps track of what medicines she needs to take. “The pillbox I have is larger than a normal one – it’s actually bigger than a standard size piece of paper. With that, I’m able to plan on filling it weekly on Sundays, and then I don’t have to worry about remembering which pills to take when during the week. This also helps to plan when medicines are going to run out. I call the pharmacist on Monday if I know that my prescription will be finished by the end of the week.”

Though it’s convenient, there are risks with a weekly pillbox. “I have seen one too many weekly pillboxes pop open. Then it’s hard to accurately identify each medicine and put it back in the correct location,” warns Ila.

Tip 2: Create a color-coded chart or system to keep track of doses and symptoms

Many people find it helpful to keep a list of all their medicines for reference. A medicine list can also be a useful way to chart and keep track of your pills. These lists may include the dose, the time and date a pill was taken, and any symptoms you have.

After Greg’s transplant in 2009, he left the hospital with nearly 30 pills to take each day. To help him manage all of the doses, he kept a binder full of spreadsheets that he would fill out and follow. “In the spreadsheet that we created, I would include spaces to check-off a medicine after I took it. I found it to be like a little success each day I could look forward to.”

Tip 3: Get help from others pills-1_260x150px

There’s a lot to keep track of after transplant. Having someone to help you organize your medicines can take pressure off of you while you’re recovering. Ask your caregiver or other loved ones for help organizing your medicines, and taking them according to your doctor’s instructions.

Your transplant team can also help. For example, your transplant pharmacist can help you learn about your prescriptions, organize your pillbox, and give you a list of all your medicines. “Use a team approach! Use a system that works well for you and your loved ones. This can take the burden off of you as you recover,” Ila says.

Tip 4: Ask questions

There’s a lot to learn about your medicines. When you’re talking with your doctor or pharmacist about a new medicine, many people ask what the medicine is for and how much they have to take. You may also want to ask how to store it, if you should take it with food or not, and what to do if you miss a dose.

“I think that one of the biggest pieces of advice I could give someone is to listen to your body. If something feels off, don’t ever sit on it – there more than likely is something the doctor or pharmacist can do to either help or ease your mind,” Greg suggests.

 

Need more tips for managing your medicines? Talk to your doctor or pharmacist. Or call the Be The Match® Patient Support Center, which provides support, information and resources for patients, caregivers and families before, during and after transplant.

CONTACT THE PATIENT SUPPORT CENTER:
CALL: 1 (888) 999-6743
Monday through Friday, 8 a.m. – 5 p.m. Central Time
EMAIL: patientinfo@nmdp.org
LEARN MORE: BeTheMatch.org/patient

A transplant delivers a cure … and a new path in life

Posted January 9th, 2017 by Be The Match and filed in Patient Stories
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At 19 years old, Shane was making plans for his life, which included starting his second year of college. Then about a week before school started, Shane woke up feeling miserable. What seemed like a bad cold or the flu turned out to be something much more serious. Doctors found Shane’s blood counts were extremely low. He had aplastic anemia.

His doctor immediately admitted him to the hospital. After trying another treatment first, transplant was Shane’s best hope for a cure. He had his transplant just a few months later. His recovery hasn’t been easy, but his transplant journey led him down a new path that he now loves.

Here are Shane’s own words on how he found his new path:

Shane, transplant recipient

Shane, transplant recipient

“When I found out I had aplastic anemia it came as quite a surprise. I was a very active person, and I’d felt fine until I woke up one day with a fever and sore throat. Recovery from transplant has definitely had its ups and downs. Six months after my transplant, the steroids caused me to be about 60 pounds heavier than I’d ever been. I had some skin issues that fortunately did not turn out to be GVHD. I was going back to the hospital about once a week for checkups. It was hard to deal with.

“I was used to being social and active, and I was stuck in the house. I couldn’t be in the sunlight and I was uncomfortable in my own skin. We had to be careful with who came to see me because my immune system was still recovering, but it helped to have visits from friends.

“I didn’t always deal with the emotional aspects of recovery very well. Looking back, I should have taken better care of my mental health and reached out to a counselor or someone who could help me.

“Finally in September, I was able to start volunteering at my local community arts center again. It was a saving grace to have some responsibility outside the house. But at the same time, I was dealing with another disappointment. I couldn’t go back to college because of setbacks in my recovery. Thinking about going back was what had kept me going. I took it pretty hard, but the arts center scheduled me for more time and took me on as a volunteer intern, so that helped.

“I also started tutoring adults working on their GED. And I started volunteering at a local crisis center. Over time, the crisis center offered me a paid position. Now 3 years after transplant, I’m doing pretty well. My anxieties aren’t about my transplant anymore but like those of any 23-year-old asking, ‘What am I going to do with my life?’ I don’t feel alone anymore in feeling like, ‘What’s next?’ I love my job at the crisis center, and I’ve discovered that this is the type of work I want to keep doing in my life.

“My life took a different path than I expected, but it’s led to something good and I’m thankful for that.”

_____

While recovery is different for everyone, most people will have one or more setbacks.

Here are 2 strategies others have found helpful to cope with setbacks:

  • Meet with a counselor or therapist
  • Talk about your recovery with other transplant recipients ─ at your hospital or through Be The Match®

Have questions about recovery and want to talk with someone who’s been there? Our Peer Connect program can help.
We’ll put you in touch with one of our trained volunteers — who are transplant recipients and caregivers — to answer your questions and share their own transplant experiences. The program is available to both transplant recipients and caregivers and we will do our best to find someone that most closely matches your situation (based on age, disease, etc.) Talking with other transplant recipients and caregivers can help answer questions such as:

  • How long did it take to recover?
  • What is your life like after transplant?

Volunteers are available to talk by phone or email. Request a connection now.

“Thank You Will Never Be Enough”

Posted November 10th, 2015 by Be The Match and filed in News
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Dalton(R) family_Sandy-Jared_100Sandy and her husband Jared try not to take anything for granted. They believe that even the most trivial things, like walking outside or going to the store, are moments to be grateful.  “You value life so much more when you have watched someone fight for theirs,” said Sandy. Since their son, Dalton was eight weeks old, Sandy and Jared have watched him battle for his life and, ultimately, win.

When Dalton was only two months old, he started to experience frequent bacterial and skin infections. After months of appointments, which produced few answers, doctors finally learned that Dalton’s symptoms were a result of a much larger issue: a genetic immune system disorder called severe combined immunodeficiency (SCID). The diagnosis was very scary; Sandy and Jared were told that if untreated, babies with SCID usually die within a year.

Dalton(R) with Dennis(D)_348Dalton’s best hope was a marrow transplant. Unfortunately no one in Dalton’s family was a suitable match. Dalton’s doctors then turned to the Be The Match Registry to find an unrelated marrow donor.

Thankfully, Dalton was lucky. Multiple matches were identified and shortly after, Dalton’s doctors requested additional testing to determine which donor would be his best chance for survival.

Before his transplant, Dalton underwent eight days of high dose chemotherapy to prepare his body to accept the new donor cells. While Sandy and Jared knew that a marrow transplant was Dalton’s best hope, watching their child suffer was emotionally taxing. For Sandy, the 100 days post-transplant were “the scariest and most stressful of my life,” she said.

After a long recovery, Dalton was finally able to return home. “You look at him now,” said Sandy, “and you would never know what he has been through. He has gained weight and has his hair back. He is making up for lost time!”

Dalton(R)-44Without a transplant, Dalton might not be alive. This September at the Be The Match Annual Gala, the family got the opportunity they had been waiting for – the chance to thank the stranger that saved their baby’s life. For the first time, Dalton, Sandy and Jared met Dalton’s marrow donor, Dennis, a fire chief from Boise, Idaho and got the chance to thank and hug Dennis for the gift he gave Dalton.

This Thanksgiving, Dalton’s family is thankful for Dennis and all Be The Match supporters.  “Thank you will never be enough,” said Sandy, “but it is all we have. It comes from the bottom of my heart.”

This Thanksgiving, you can help give a child the gift of life by supporting the life-saving work of Be The Match. Your gifts help more patients get the marrow donation they need.

*If the donor center allows and both parties consent, a donor and recipient or a recipient’s guardian must still wait one year before they can exchange contact information and meet in person.

Skin GVHD: How to spot and tips to manage

Posted May 14th, 2013 by Be The Match and filed in Patient Stories
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Dr. Stephanie LeeGraft-versus-host disease (or GVHD) of the skin is a reality for many transplant recipients. As a common side effect of transplant, it can affect many parts of the body. Do you know how to spot skin GVHD? Do you need advice for coping with the ongoing management of GVHD? Dr. Stephanie Lee and Everett, a  transplant recipient, offer insights and advice to help.

What you should do once a month
Whether or not you’re currently experiencing GVHD symptoms, it’s always important to look for changes.  “The sooner we can treat your symptoms, the better. We want you healthy,” says Dr. Stephanie Lee, Professor of Medicine at Fred Hutchinson Cancer Research Center.

“Once a month, stand naked in front of a mirror and look at your body. Feel your skin. Look for changes. You know your body better than anyone else,” she says.  “If you notice anything unusual, tell your doctor right away.  Don’t ignore early symptoms of skin GVHD, which can include: a rash, itching, thickness, tightening, burning (in rare cases), or problems moving joints.

When it just won’t go away
Everett has been managing chronic GVHD of the skin for the past ten years. While his GVHD has not been severe, it’s certainly been an ongoing challenge. He experienced a defining moment many years ago with his doctor. “After a frustrating episode with my GVHD, I asked if she could just fix it and she said, ‘No. You have this.’ That’s when I really understood that this is something I would have to manage for life.”

Everett, transplant recipientEverett explains that the appearance of his GVHD— loss of pigment (dark and light lesions) on his face, legs and feet—can be uncomfortable at times. He works in sales and often has face-to-face interactions with clients. “It can be an issue,” he says, “People can tell something is going on.”

Scenarios like this can be difficult, but Everett says, “I’m grateful that I have the type of personality that allows me to stay positive and not sweat the small stuff.” He encourages others to have a positive attitude and to work closely with their doctor. “If you can, stay with the one doctor. And always follow doctor’s orders.” Through a referral from his transplant doctor, he’s had the same dermatologist through it all. This relationship has helped him learn to manage his GVHD in new ways, like trying different lotions and ointments prescribed by his doctor.

Dr. Lee agrees that GVHD can be challenging, but working together with your medical team and following precautions like avoiding the sun can make all the difference. “Patients can become frustrated with long-term management of GVHD— especially if treatments aren’t working as well as they once did. But don’t give up. Talk to you doctor and let us find what works best for you,” says Dr. Lee.

Team up with your doctor to find the best treatment
“Many treatments are available but it comes down to what works best for you. Sometimes that means trying different treatments regimens—what works one day may not work as well next month, so tell us how things are going and we can keep trying new things together,” Dr. Lee says. “If a treatment is not working well—don’t try to adjust it yourself, that could be dangerous. That’s what we’re here for—to help you stay healthy and feel better.”

Learn more tips to help prevent and manage GVHD or share your experience with GVHD below.

Craving connections after transplant: young adults reach out to peers for hope and healing

Posted May 14th, 2013 by Be The Match and filed in Patient Stories
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Matt, transplant recipientMatt’s Story

Adulthood on hold
Matt was on his way to adulthood. He had just graduated from college, was working at a bookstore, considering law school and was enjoying life with his  girlfriend, Cori. That’s when he got the news that changed everything.  He had cancer and needed a transplant.  Suddenly, life as he knew it was put on hold.

“The world was in front of me. You go from being a carefree 20-something, to thinking you might not make it the next two years.”

In an instant, Matt’s plans for the future changed. Instead of hanging out with friends, he was living with and relying on his mom.  He and Cori were spending more time as patient/caregiver than as boyfriend/girlfriend. “We used to spend our weekends going out with friends. Instead, we were at home and she was cleaning my port. It was hard to accept that this was my new reality.” Matt said.

Finding new ways to connect
During Matt’s treatment, his life was consumed with medical appointments and procedures. His friends were enjoying their lives and moving on. “I couldn’t relate to them anymore and I lost many friends. That was isolating.”

Matt had to find new ways to connect with people who could understand what he was going through. He started reaching out to others through adolescent and young adult (AYA) support groups where he found others he could relate to. Without having to explain, they understood his experience.

“Oregon Health & Science University (where he received his transplant) has a great AYA program. I was fortunate that my doctor was so involved in the AYA cancer community. He helped me connect with others like me, and that was extremely helpful. Participating in activities like the river rafting trip was really important for my recovery. Not just physically, but being able to find your new normal–finding fellow survivors who have gone through similar things–is a way to kind of regain your sanity,” Matt said.

Matt’s advice: “It can be lonely, but you are not alone. Find others in the same place as you. Find new friends who understand your story.”

Reclaiming his adulthood
Today, Matt and Cori (now his wife) are enjoying their 30s. They spend time going to movies and meeting friends for dinner.  He says the transplant experience made him see things differently. “It forced me to grow-up and offered a perspective you can’t buy. So I think I have an appreciation for my life and just everything that encompasses that is really priceless.”

Watch Matt’s full story on Insights eCommunity >

 

Kayla, transplant recipientKayla’s Story

Kayla was a senior in high school having fun with her friends and planning her future when she got sick. She was thankful for the gifts of love and support she received from her family, but she was missing something: her friends. She had many friends, but they didn’t stay by her side during transplant. “I would pick up my phone to find someone to call. There was no one. It would have been nice to have some friends to lean on,” she says.

“My mom was there to hold my hand, which made me feel secure. My cousin prayed for me constantly, made me laugh even when I was exhausted, and kept my spirits up. My pastor’s wife kept me wanting to fight, even when I was tired and down.  The nurses also made me feel like they really cared if I survived. Their words of encouragement helped me to understand what was happening to me and what to expect during my treatment,” Kayla says.

Finding peer support
Kayla found peer support through social media. Through Facebook pages like Be The Match Patients Connect and Insights e-community, she found other patients she could relate to and who understood what she’s been through.

Kayla’s advice: “You are not alone. Reach out. Try to contact other patients. It’s helpful to talk with others who’ve been through transplant.  They can relate because they’ve been there.”

The new me
“I just recently started nursing school in January and completed my first semester with straight A’s. Being a patient has motivated me to want to be a nurse because I will truly understand exactly how the patient is feeling. I will be a bone marrow transplant nurse in 2015! If I hadn’t gotten sick and gone through transplant, I would have never gone to nursing school. It’s amazing how things seem so broken for so long when you’re sick, but if you just hang in there, all of the broken pieces come together into something bigger and better than I could have ever dreamed of. I am well on my way to making a difference in the lives of future transplant patients.”

“Transplant changed me completely,” she says.  “I am slowly finding the ‘new me’ and realizing I am in a different place in my life now.”

Join Kayla on the Insights e-community. Start a discussion that matters to you.

 

Social support: tips from Insights e-community
It can be hard for others to see someone they care about go through something so difficult. You may find that some friends will distance themselves, while others are with you every step of the way. Both are normal responses to a stressful situation. Find ways to communicate openly and honestly with your friends.

Know your risk factors for developing heart problems after transplant

Posted February 5th, 2013 by Be The Match and filed in Patient Stories
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Certain types of treatment before your transplant or complications that happen after transplant can sometimes increase your risk of heart problems. So what can you do now? Dr. Saro Armenian explains some of the signs and symptoms you should be looking for, the questions you should be asking your doctor, and what you can do now to improve your heart health.

Q: What effect does my treatment before transplant have on my heart?

The treatment you received before your transplant has just as much of an effect on your heart as the transplant itself. Treatments before your transplant that increase your risk of heart problems include: chemotherapy with a group of drugs called anthracyclines (doxorubicin, daunomycin, idarubicin, epirubicin) or past treatment with radiation involving the chest wall.

It is very important that you know the types of chemotherapy or radiation you received. Most transplant centers can give you a summary of your treatment history. This is a good way for you and your doctor to talk about any long-term effects that your treatment may have on your heart health.

Q: Could my personal or family health history have an impact on my heart health?

As a transplant recipient, risk factors like diabetes, hypertension, and abnormal cholesterol (that shows up after transplant) can also increase your risk of heart disease. These risk factors, combined with transplant-related treatment, can put you at a greater risk for heart issues. You should tell your health care team if there is a family history of cardiovascular disease such as heart attacks, strokes, or heart failure.

Q: What are signs and symptoms of heart problems?

Symptoms of heart problems for transplant recipients are the same as the rest of the population. Symptoms include, but are not limited to: shortness of breath, dizziness, lightheadedness or near-fainting, chest pain, swollen ankles or feet, unexplained cough and wheezing that will not improve with time, periods of heart racing or throbbing, or periods of irregular heartbeat.

Let your healthcare team know any time you have any of these symptoms or if you’re worried about your heart health.

You may not have obvious symptoms, but abnormalities can show up on routine tests, like an echocardiogram (ultrasound of the heart), EKG, or blood tests.

Q: If I have any of the symptoms mentioned, what heart problems could I have?

Blocked or scarred blood vessels of the heart (coronary artery disease), weakening of the heart muscle (cardiomyopathy or heart failure), irregular heart rate or rhythms  (arrhythmias), problems with the valves within the heart (valvular problems), or scarring of the sac around the heart (pericardial disease), are all things to watch for. These health conditions are often life threatening and are one of the leading causes of death in long-term survivors of transplant.

Also, GVHD medications such as cyclosporinesteroids, and other groups of medications increase the likelihood for premature heart disease.

Q: What tests should I have to find out if I have any issues?

A good starting point is making sure your doctor has a detailed history of your health, including symptoms, family history and medications you’ve taken. Also, you’ll want to get a physical exam that checks blood pressure, heart rate, and your heart and lungs. Lastly, some doctors may want to do follow-up tests such as x-rays, echocardiograms or an EKG.

Editor’s note: Post-transplant guidelines from Be The Match® provide screening and preventative steps for transplant recipients. For your heart, the guidelines recommend:

  • Checking for heart and blood vessel risk factors, such as high cholesterol, high blood pressure, obesity, history of smoking
  • Discussing a “heart healthy” lifestyle (regular exercise, healthy weight, no smoking, dietary counseling)
  • Receiving early treatment of risk factors such as diabetes, high blood pressure and high cholesterol
  • Find out if you need to take antibiotics before a dental procedure to prevent a bacterial infection.

Q: Are young transplant recipients also at risk for heart issues?

Yes. Because transplant recipients are at a higher risk of developing heart disease than the general population, it can also occur at a much younger age. The process of developing heart issues can increase because you had pre-transplant treatment and may have other risk factors.

The good news is that younger patients who take charge of their health can really reduce their risk with lifestyle changes and medication.

Q: How can I keep my heart healthy as a transplant recipient?

You can cut down your risk of heart problems by not smoking (or quitting if you currently smoke), maintaining a healthy body weight, limiting fat in your diet to  no more than 30% of calories, and exercising regularly for at least 30 minutes on most days of the week.

If you have heart risk factors such as hypertension, diabetes, or abnormal cholesterol, make sure your primary care doctor keeps an eye on your blood pressure, blood sugars and cholesterol levels.

Q: What are ways I can be proactive about my heart health?

It’s a good idea to maintain regular contact with your healthcare team, so that you can have routine screening for early heart disease. By finding any issues early, you can minimize the risk of life threatening heart problems.

Keeping your relationship strong when your spouse is your caregiver

Posted February 5th, 2013 by Be The Match and filed in Patient Stories
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Wendy and Clark have a lot to celebrate these days – 25 years of marriage and Wendy’s upcoming 4th “new” birthday.
 
Clark was Wendy’s  primary caregiver as she battled ALL and MDS, and during her double cord transplant in the summer of 2009. As husband and wife, they are now back to enjoying hiking, spending time with friends and going to church.

Whether you are a patient or a caregiver, you know that going through the journey of a life-saving transplant affects your relationship with the other person, for better or worse.

Wendy and Clark say they are best friends and love spending time together. How did they manage the patient/caregiver dynamic as a married couple? How did they make it through years of chemotherapy  and a transplant to arrive at a relationship that is stronger than ever?
 
The patient: Wendy’s perspective
The hardest part about balancing the roles of patient and spouse was realizing how much my role as a wife changed.  Before transplant, I felt equal to my husband in every way and now I did not. I felt weak, less than. My husband absolutely did not make me feel that way – it was all me. However, when you can’t do the same things you used to do and need to be taken care of, it affects how you feel about yourself and the most important relationships in your life, like being a spouse.

I think the patient/caregiver dynamic will always be part of our lives to some extent, but it lessens more and more as time goes on. Clark will always be more protective over me and my health because of my diagnosis and transplant, but I’ve been able to manage all aspects of my health care by myself for three years now and it is no longer a daily issue. Clark would tell me over and over again my only job was to recover and get better.  In that sense, he made it very easy for me. He wasn’t expecting me to play the same role I had before I was diagnosed. However, there are times when, as a patient, you don’t want to be in that role – you want some sense of normalcy. You just want to be a husband or wife. That is why communication is very important.  You need to let your spouse know, in a loving way, of course, that you don’t want to feel like a patient all the time. At some point you want to start taking on the spouse role to feel normal and productive, and as a distraction from being a patient.

The biggest issue for me is understanding how to deal with my emotions. It is better than what it was early on, but he still has to help me out in that area on occasion (as well as seeing a counselor, occasionally). It’s important that we both feel like we can communicate freely. We each talk about our fears, frustrations, disappointments, anxieties, grieving. Each person can then appreciate what the other is going through. Many times, we are both feeling the same way. Then we can help each other and not feel so alone. In the process we became closer.

Another part of communication that few people are willing to talk about is sex. Things change after diagnosis and transplant. Talk to your doctor or a certified sex therapist (we found one who was excellent) if there are any issues in that area for either partner. That can strengthen a marriage greatly and enhance communication, self-worth and happiness.

There are a few strategies or ideas that have helped us keep our relationship strong. For example, we make time to do things that don’t revolve around anything medical; take a walk, watch a movie, play a game or go out with friends.  As equally important for us is prayer and worship time together. Slowly introduce tasks that the patient can do to contribute to the daily running of the household (paying bills, fixing dinner, doing laundry) so that the patient feels productive and needed. Consider asking friends and family to help with daily chores (grocery shopping, cleaning, medical appointments) so that there is more time for relationship time. Talk to each other frankly about needs and expectations.  Get outside help if you need it – from a counselor or pastor. 

I believe a relationship can’t help but change after an experience like this. For us, thankfully, it deepened and strengthened our relationship. We know what each is made of now. But it does change the dynamic. We view life differently now. We have experienced life changing drastically from one moment to the next – never to be the same. That changes a person and a relationship. We make and think of plans differently; there is always a caveat. But it also makes us appreciate each other and every moment we have together and every special occasion, even more. We try not to take anything for granted and be very grateful.

The most special part was seeing my husband take on roles that he really hadn’t before, and that just deepened my love for him. For a while, he had to do everything, and he did it all without complaining. He demonstrated his love and commitment to me by doing all the mundane (and extraordinary) things on a daily basis. He was living out the vows he had professed to me 20 years earlier – in sickness and health, good times and bad.

 “The line between caregiver and spouse would blur frequently. I would be flushing her picc line one minute and the next minute discussing what to get our dads for Father’s Day.”  
-Clark, caregiver

The caregiver: Clark’s perspective
The line between caregiver and spouse would blur frequently.  I would go from being a caregiver to being a spouse back to a caregiver in the same hour. It all depended on what needed to be done.  I would be flushing her picc line one minute and the next minute discussing what to get our dads for Father’s Day. It is hard to distinguish why you are doing or saying a particular thing.  Am I making dinner and doing the dishes as a spouse or a caregiver?

It was a little different for me because Wendy was diagnosed with ALL and two years before her transplant she went through HCVAD (a type of chemotherapy regimen) for eight months.  The chemo was eight rounds, which required hospitalizations for 5-10 days.  The caregiving role after the transplant was not that different from the caregiving role during HCVAD.  Of course, I had no idea what was ahead of me as a caregiver. I was totally unprepared. 

For me the hardest part of our dynamic was knowing when to be a caregiver and when to be a spouse.  There were times when my wife needed one over the other. Today, I would say my role as a caregiver decreases every day. From 2007-2009 I was an active caregiver, but now it is more passive. But I think it will always be part of our relationship.  When you are a caregiver for someone you have committed your life to it is hard to erase that thought pattern.  Although as time goes on it becomes less and less of a thought pattern.

Communication is an excellent way to maintain a healthy relationship.  Making time for each other is also very important.  We walk every day together and talk about what is going on in each other’s life.  Even though we now have a new normal we still have a normal life, we do the things we did before the transplant.

If I could say anything to other couples in this situation, I would tell them that I know it is hard but do not let the disease or transplant define who you are or who you are married to. This is just another bump in the road of life. I know it is a big bump but you can make it. There is a light at the end of the tunnel and it is not a train.  Life will get back to a new normal and the roles of caregiver and patient will fade with time.

This experience has caused us to deepen our relationship and love for each other and there is a sense of satisfaction knowing that we went through hell together and ended up closer than before.

Who is your caregiver? And in what ways did your relationship change? Share your story 

Be The Match Foundation kicks off patient assistance campaign

Posted November 17th, 2009 by Be The Match and filed in Patient Stories
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As of Tuesday, more than 5,700 new marrow donors joined Be The Match Registry as a result of the Joey Stott story featured on ABC’s “Extreme Makeover: Home Edition” this week. Before Joey’s cancer diagnosis and subsequent marrow transplant, the Stott family had purchased a farm and made efforts to ‘go green,’ opening a local farmer’s market. A fire made their old farmhouse unlivable. This devastation happened on top of financial hardships that the Stott’s endured from uncovered transplant-related expenses.

In an effort to raise $1 million to give bone marrow transplant patients like Joey one less thing to worry about, Be The Match Foundation collaborated with “Extreme Makeover: Home Edition.” A campaign for patient assistance funds was created and officially kicked off during Sunday’s episode.

For more information about the patient assistance funds visit http://bit.ly/c5Blf

To view Sunday’s episode of Extreme Makeover:
Home Edition go to http://bit.ly/3U5WAQ

To join the Be The Match Registry go to www.marrow.org/join