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.
Strength in a Heartbeat, Diary of a Heart Transplant
Read our personal journey on the heart transplant list