Anything is possible
heart transplant, inspirational story, organ transplant, motivational story, kidney transplant
Ever wonder what it is like to live on the Heart Transplant List?
"Strength in a Heart"
Diary of a Heart Transplant"- Book
An Amazon #1 Best Seller
Kindle Editions also
During our first journey on the heart transplant list, I turned my journal into a book to educate, inform and if you would like to know what it is like living on the heart transplant list, this is our story.
"Strength in a Heartbeat, Diary of a Heart Transplant" is a true count of what it is to be on the heart transplant list.
"It captivates your thoughts and draws you into each day, each battle and struggle. Not only do you begin to understand the magnitude of what's going on, it comes from a mother's perspective watching what her child is going through. You see the raw life in a hospital where day after day you see improvement only to take major steps back. You will be in awe of the human spirit, the strength of a warrior, whose thirst for life drove her through the day to day challenges receiving a new heart has brought. I encourage you to read this, to learn and understand the strength of our drive to live, to do more than survive, so when life knocks on your door (and it will at some point) you can know the strength to persevere is in there, it's locked inside, we just need the courage and strength to let our warrior come out to save us".
Even Rob Gronkowski aka GRONK from the New England Patriots football team is a fan. A great man who took time to visit us, and helped promote our book.
An inspirational story, no matter how many set backs, love and motivation got us through it. If you have read our story, thank you. Please spread the word. I published it to help others that are in this situation.
Let's start with this fact:
A heart transplant is not a cure, it's a new lifestyle.
My daughter had her first heart transplant on December 28, 2013. Also along with needing a new heart, Lauren also has a rare form of Muscular Dystrophy along with scolioses After months of living in the hospital, then eventually receiving a LVAD, Lauren received her gift of life, her new heart. After her transplant, Lauren had a very hard time in her recovery stage. Six months after her heart transplant she was finally released from the hospital. Lauren hit every obstacle that could happen. During that time I wrote in a journal, which I have published to help others that are in the same situation. My main purpose, to let others know they are not alone. Other's are going through this very hard journey. I was the mom that googled everything the Dr.'s talked about. My book will help you understand what to expect and how we survived living in the hospital. I have also included a section about what different hospital's offer example: meal vouchers, laundry facilities, parking passes plus many more.. Amazon Best Seller, motivational, inspirational true story.
" Strength in a Heartbeat, Diary of a Heart Transplant"
Jumping ahead, Lauren's new heart went into rejection after a few years. Lauren was placed on the Heart Transplant list again in December of 2017. On top of needing a new heart, we found out that Lauren also needed a Kidney Transplant as well. I offered one of my kidney's but was told both organs needed to come from the same donor. Back to living in the hospital waiting again so my daughter can live her life.
My daughter was blessed and received her new heart and kidney on May 17, 2018. Lauren's recovery went smother this time. We came home in June 2018.
Like I mentioned at the top, an Organ Transplant is NOT a cure, it's a new lifestyle not only for the patient but also for the caregiver.
The organ transplant recipient is given a new life, no more CHF (Cardiac Heart Failure) if you had the LVAD no more machine attached to you. Freedom.....but only to a point.
Let's talk....after an organ transplant your life is filled with a plethora of medications. Get to know your pharmacist, he or she will be your new best friend. To make it easier for you set up an appointment with your pharmacist to sit down and go over all your meds, so they can plan ahead to have your medication in stock for you. You don't want to ever run out of any of your life saving medications. Planning, planning, planning is key.
Next, your transplant team will keep a close eye on you. Biopsies, echoes, blood work, check ups will be part of your new life. Diet is probably the hardest obstacle you will have to adjust to. So so many no no's. Sodium is your enemy. This is where my daughter has her biggest dilemma. It probably seems like diet would be the easy part, but when you really need to look at everything you put in your body, it can be very frustrating. Education is key in this area.
Life after an Organ Transplant is also hard on the caregiver, parent or spouse. Just as the recipient, you are living in constant fear of complications and or rejection. The fear is real. It's part of our life now.
I can only speak for myself, but if I hear one more time "get over it, stop living in the past" I just want scream. What I am talking about is, for me personally watching my daughter fight for her life on multiple occasions, to be honest the last five years we have been in and out of the hospital. Living through two transplants is something you don't get over and I know I never will. Fear is always with me. I have been told I have PTSD, from living in the hospital for so long and seeing things that a parent should never see happen to their child. To this day, I feel like I am always on edge.
Daily weight ins is part of a transplant's routine. This is a way we know if Lauren is putting on fluids. (Fluid build up is common) Two weeks ago, I noticed Lauren's weigh was going up almost every day. Flag for me. Noticed she was taking a few more naps, Flag for me. My anxiety is starting to grow. We call her team, they order blood work. Next thing they are on the phone with us and they want to admit Lauren into the hospital. This is life..... You never know when or why, but without notice your living in the hospital again. For me, in my mind I see all the bad things that has happened to my daughter in the hospital. Thinking can't my daughter get a break, Lauren was hospitalized for five days on this trip. I guess we did get the break I was hoping for. Nothing life threatening. Lauren was given IV Lasix to help her body rid the fluid that built up.
Below is the medical protocol after an Organ Transplant.
PROXIMITYWithin the first three months post-transplant, we ask that families stay within relatively close to the hospital. Transplants are at their highest risk for death or major complications within this time frame, so it’s important to stay close enough for clinic visits and in case there is an emergency.
During the 3-12 month post-transplant time period, families stay within four hours of the hospital. This proximity is a precaution to make sure that if complications were to arise, you could be safely transported from your local hospital to your own. We also ask that any vacations you might take happen within four hours of the hospital so that you’re close enough in case of an emergency.
After the one year mark, families won’t need to stay within a certain radius of the hospital. The likelihood of significant complications decreases after this point. However, we can always recommend a vacation location with a close local hospital in case there is an emergency or illness while on vacationing.
CLINIC VISIT AND EXAMDuring clinical exam, our heart transplant physicians will: listen to his heart to make sure that it’s not making any additional sounds that could indicate rejection; listen to his lungs to ensure there is not extra fluid on the lungs that could suggest a negative side effect of the medications; examine his liver to make sure it’s not enlarged, which could indicate that the heart is not functioning appropriately; look at his lymph nodes, which can be indicators of an immune system response. A pharmacist will also review your medications with you and determine if there are any side effects and adjustments that need to be made.
BIOPSY AND CARDIAC CATHETERIZATION (CATH)In order to biopsy (remove a tiny pinhead size of tissue) the heart, we will need to perform a cardiac catheterization procedure. Our pathologists will review the tissue to make sure that there are no signs of rejection, and our catheterization physicians will be checking to make sure that your pressures within the heart aren’t abnormal, which can be related to rejection.
* At the one-year mark and every subsequent year, we will also do a biopsy and cath to check coronary arteries. The narrowing of the coronary arteries, or coronary artery disease, is one of the biggest risks of heart transplantation and often the cause for re-transplant.
ECHOCARDIOGRAPHY (ECHO)You will frequently receive echocardiograms to ensure that there have been no acute changes, no signs of rejection, and the heart is squeezing appropriately.
LABSWhen we draw blood, we will be running labs to check on many different things:
5.0 out of 5 starsWarrior Girl held on top of the rock of her mother's strength
It captivates your thoughts and draws you into each day, each battle and struggle. Not only do you begin to understand the magnitude of what's going on, it comes from a mother's perspective watching what her child is going through. You see the raw life in a hospital where day after day you see improvement only to take major steps back. You will be in awe of the human spirit, the strength of a warrior, whose thirst for life drove her through the day to day challenges receiving a new heart has brought. I encourage you to read this, to learn and understand the strength of our drive to live, to do more than survive, so when life knocks on your door (and it will at some point) you can know the strength to persevere is in there, it's locked inside, we just need the courage and strength to let our warrior come out to save us.
When we think about getting ready for Christmas, we find ourselves running around looking for the perfect present's, trying to turn our house's into a winter wonderland, for all to enjoy. Then our thought's drift to the cooking and baking that needs to be done. Most of us, not all, but I really believe most of us make lists on top of list around our calendar to ensure everything is done on time.
This is the first christmas that our family will be home, not in the hospital for Christmas. Last year, we were very fortunate that Lauren's transplant teams allowed us 2 weeks to be able to go home for Christmas. But, of course we had to leave the hospital with equipment and a visiting nurse every day. Lauren had to stay on her medication through a central line and also had to wear a life vest.
This year is so different. Lauren's new heart and kidney are doing great. We did have a little bit of a scare last month, but luckily they caught it early and it was a medication change.
As some of you may know I have not been feeling well the last couple of months. Intestinal problems. I was so scared I was going to be the one in the hospital this holiday season. Over the last couple of months my doctors did work diligently trying to figure out what was wrong with me. I am happy to report we finally received a diagnosis, I have Microscopic Colitis. The reason I say happy, is because myself and my family we were thinking the worst the C word. This type of Colitis is not curable but can be controlled to a point with medication. I have since, join a support group for this condition. Knowledge is key, and to be able to relate with others is a comfort. Now we can start moving forward in our lives as a family.
Every family has their own traditions for the holiday's. The picture's above are from one of our family traditions. Dean, Lauren, Maddie and myself get our Santa hats on to go pick out our Christmas tree. This year our granddaughter Maddie picked out our tree, after that we headed over to Dunken Doughnuts for hot chocolate for our drive around our community to look at all the decorated house's. I have noticed it's fewer houses, than it used to be, but there are still quite of few of people that go all out and put on a beautiful light show. Maddie is so cute, before we left the house she gave us the run down on what we were doing. She said "this is what we always do". Priceless......
In the past couple of months I have added a couple of new pages to my website.
"Care & Support" This page is dedicated to families that have a medical fundraiser. I created this page with the main intent to help others get the word out about their fundraising venture. Advertising is so important, so I thought my website's following could help in sharing their fundraisers. It is only for medical fundraising needs. So so many people need help. When we were in that situation, it is a very humbling experience, but living in a hospital or if it the bread winner in the family that is sick, the bills do not go away. I would like to think this is a small way I can give back, to be able to help others. Feel free to check out the page and maybe help a family in needs. If you know someone with a medical fundraising page, please fill out my contact page and I would be happy to post it.
"Shop" Brand New Page was created and posted just a couple of days ago. Lauren and I have been working with a company in designing an organ transplant lapel pin. A lot of time and love went into the design and we are very proud of the product we have created. We created a Heart, Kidney and Lung lapel pin. They are called
"Miracle Guardian Angel Wings"
Wear your Miracle Wings to show your support for a friend or loved one waiting for their miracle, the gift of life, an Organ Transplant. If the Gift of Life has been received already, wear your Angel Wing Pin to keep your Guardian Angel close.
Measures : 1 1/2 length, 1/2 wide Lapel Pin style, Comes with backing and delivered in a sachet bag for gift giving.
Perfect for coats, handbags, hats, anywhere you would like to keep it close to you.
Looking for a Medical Fundraising Idea
Miracle Guardian Angle Wing Pins are perfect for a medical fundraising. Great way to show support, and can become a conversational piece to help you raise medical funds.
Special fundraising pricing available.
Fill out contact page with your info and I will be happy to discuss your fundraising pricing.
You hold your family together. Your energy seems boundless; your commitment is palpable. I was convinced that you could do no more and then you agreed to become a family member caregiver.. Now your work is never finished. When she cries out to you in the middle and you respond, with patience and kindness. We call you a family caregiver but this label doesn’t feel quite right—you say you are a mother, wife, sister and daughter first. It is clear that caregiving is in your soul, but it does not define you.
You are tenacious but humble. You ask for nothing in return for your efforts but your face lights up to small gestures of gratitude. You demonstrate compassion in the face of constant exhaustion. You cook, clean, transport, and translate. You reconcile and administer medicines, pay bills, act as health care proxy and power of attorney. You maintain a career despite spending as many hours each week managing family and coordinating care as you do at work. You prove that grace is not just a word but a state of being.
Increasingly, you compromise taking care of yourself, always putting others first. Your fatigue has led to poor eating habits and weight loss. You are becoming more isolated from friends and family. You recently expressed your loneliness and I am concerned about what that implies. You will always trade things most precious to you in favor of those you love, who always seem to need more.
You and 44 million of your fellow caregivers around the country are the foundation of our healthcare system, providing over $500 billion each year of uncompensated care. Without that commitment, our very society would be in peril. As Americans, we all owe you a debt of gratitude.
I am proud to know you. Thank you for your service to our country.
Thomas P. Riley
Chief Executive Officer and President Seniorlink
This is a letter I received, and would like to extend it to all my caregiver friends. When we think about being a caregiver for a family member, most jump right in, without thinking of all the responsibilities and yes, the work it takes to care for a medical family member. It is over whelming at times, but we just keep going.
I would like to reach out to all caregivers and give them a big hug and say you are doing a very selfless act of kindness. The world needs more people like YOU!!!!!
I have met so many wonderful caregiver's though Facebook groups. Sometimes you need to talk with someone you don't know. To be able to relate to your circumstances when you have no more gas in the tank.
This is my daughter Lauren, I am her craregiver. This picture was taken last November, at the International Miami Book Fair. I am her number one cheerleader at all times, and I can say that she is mine when I need it.
After we returned home from this trip, Lauren went into heart failure.
We spent the next six months in the hospital, waiting for Lauren's second heart transplant plus a kidney transplant.
Our book "Strength in a Heartbeat, Diary of a Heart Transplant" is our story of living on the heart transplant list in the hospital, then needing a LVAD to transplant. We wanted to help other people understand what life is like living in the hospital on the transplant list.
To all Caregiver's please always remember how special you are.
If you find you need to talk, remember Facebook has some very compassionate, caring groups out there. I belong to quite a few. Sometimes they help me and then there are times when I can help someone.
Happy National Caregiver's Month
Strength in a Heartbeat, Diary of a Heart Transplant
Read our personal journey on the heart transplant list