Anything is possible
heart transplant, inspirational story, organ transplant, motivational story, kidney transplant
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.
Strength in a Heartbeat, Diary of a Heart Transplant
Read our personal journey on the heart transplant list