Anything is possible
heart transplant, inspirational story, organ transplant, motivational story, kidney transplant
For an organ transplant recipient, this is only the morning dose needed to keep your new organ healthy and your body from rejecting. Please continue to read this post, it could save your life or a loved ones life.
My name is Lynne Robitaille. My daughter received her first heart transplant in December of 2013. Unfortunately Lauren became sick again which affected her kidneys as well as her new heart. Eventually, Lauren was blessed and received her second heart and kidney in May of 2018.
Lauren is 28 years old and has lived a life I would never have dreamt. The past six years has basically been living in and out of the hospital. Months and months of hospital living waiting for her gift of life and then recovering was never easy. But she is a fighter and never gave up. She has way to much to live for.
This post is being written to help bring awareness in the importance of taking your medication every day as scheduled.
An Organ Transplant is NOT a Cure, it's a New Lifestyle.
Resonantly I have heard of two transplant recipients who has died due to NOT taking their medications. Yup, they stopped taking their rejection medications because it has been years since their transplants, and we're feeling great.
My heart broke when I heard this news. Yes people do stop taking meds when they start feeling better, but it must be done under a doctors recommendations.
An organ transplant recipient, can NEVER NEVER NEVER stop your rejections meds. You will be on them for the rest of your life. One patient was a lung transplant recipient who stopped taking the medication because she was feeling great. By the time she was admitted into the hospital, unfortunately it was to late. She was in total rejection and their was nothing that could repair her lungs, and eventually died. She could not be placed back on the list, for reasons not complying with her transplant team.
I felt the need to share this. Personally myself, I can say I am always checking with my daughter "Did you take your pills" is something I probably say to her once a day.
So the moral of this post is
NEVER STOP TAKING YOUR REJECTION MEDICATION, IF YOU ARE FEELING GREAT THE MEDICATION IS WORKING........
Please the word....
As I mentioned yesterday, we were going to get Lauren's biopsy results late yesterday afternoon. It was around 5:30 when the hospital called. Lauren said to me "mom Boston is on the phone". Lauren put it on speaker so we all could hear the news.
Lauren is still in AMR rejection....... I try to study as much as I can about different rejects, but we found out yesterday Lauren is in AMR1. Last biopsy she was in AMR2. I wasn't aware there were two types of AMR. AMR1 is better than AMR2, so our thoughts and the doctors it's not getting worse, moving towards the right direction.
On Wednesdays, the transplant team meets for their big meeting, so we were told they were going to discuss Lauren's case. We were also told that they need to wait for the results from UCLA about the special blood test that was flown out to them. The need to identify what the antibodies are that are putting Lauren into rejection.
So with all this said, it was good and bad news. Just need to stay positive, and move forward with life.
Thank you everyone for your prayers and concerns.
Love Lynne & Lauren
"After 2 months of living with antibody mediated rejection & taking oral chemo meds.. it's time to find out if this ticker still has 'rejection' or not and what the next step is"!
Today is the waiting game day. Yesterday Lauren and I went to Brigham & Women's Hospital in Boston Ma. for her heart biopsy, clinic appointment and echo.
My daughter Lauren, had her heart and kidney transplant on May 17, 2018
During the biopsies, they take a tiny piece of the heart muscle and look for signs of inflammation or rejection. This is the only way doctors can tell early on if your body is rejecting your donor heart.
After you have a biopsy, you will receive your results 24 hours later. You always pray for no rejection, but there are times when that is not the results you receive. Lauren's biopsy have all came back a 0, no rejection until last October . There are different stages of rejection. Lauren's came back as an AMR, antibody-mediated rejection. First time with a AMR rejection. After everything we went through over the past 5 years, I thought we knew mostly everything about transplantation and rejection. Totally wrong. I know as much as I needed to know, we never heard of AMR. So it was back to studying. I wanted to share some of the information I found. Treatment right now is adding a medication called METHOTREXATE.
***Methotrexate tablets are used alone or together with other medicines to treat several types of cancer such as breast, head and neck, lung, blood, bone, lymph node, uterus cancers, and severe rheumatoid arthritis.
****Methotrexate oral solution is used to treat acute lymphoblastic leukemia (ALL) in children, and help manage polyarticular juvenile idiopathic arthritis (pJIA) in children who had other treatments that did not work well.
*****Methotrexate belongs to the group of medicines known as antineoplastics (cancer medicines). It blocks an enzyme that is needed by cells to live. This interferes with the growth of cancer cells, which are eventually destroyed by the body.
Below is a grading of biopsy rejections:
**Grading rejection The pathologist, the medical Doctor who reviews the tissue slide for the diagnosis of rejection rates the presence and severity of rejection based in the International Society and Heart Transplant scale.
Antibody-mediated rejection (AMR)
Rejection refers to the organ recipient's immune system recognizing a transplanted organ as foreign and mounting a response to it via cellular and/or humoral (antibody-mediated) mechanisms. Routine endomyocardial biopsy remains the criterion standard for monitoring for such rejection. This process involves sampling of the right ventricle using a bioptome, and a pathologist evaluating the tissue. The concept of rejection is not unique to cardiac allograft transplantation and, to a varying extent, occurs in all forms of solid organ transplantation
Cardiac transplant rejection manifests in 1 or more of the following 3 ways: acute cell-mediated rejection, antibody-mediated rejection (AMR), and allograft vasculopathy.
Since Lauren has been showing AMR rejection, the doctors have scheduled a special blood test that will be done during the biopsy. The tube for this blood test needs to be personally handed to the doctor in the procedure room. It will then be flown to UCLA for examination. There are only a few institutions in the country that preforms this special test. This test was ordered by Lauren's kidney transplant team.
If we receive the news today that Lauren is still in AMR rejection, the team of doctors will discuss Lauren's case Wednesday during their transplant team meeting to put together a plan. They have mentioned the next step could be Plasmapheresis, which would be a hospital stay, possibly a week.
What is plasmapheresis? Centrifugation spins the blood for plasmapheresis.Pheresis, or apheresis, describes any process that removes the blood, filters and retains elements of it, then returns the blood to the body. Platelets, red blood cells, white blood cells, or plasma may be separated.
The procedure is performed using a machine that removes small amounts of blood at a time.
There are two ways to separate the components of blood:
So much information.......
We will probably hear back from the doctor's later this afternoon with results. Pray, pray, pray for
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.
Strength in a Heartbeat, Diary of a Heart Transplant
Read our personal journey on the heart transplant list