Strength in a Heartbeat, Diary of a Heart Transplant, why I created my book


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      My book Strength in a Heartbeat, Diary of a Heart Transplant was created from a
journal I would write in when Lauren and I were living in Brigham and Women’s Hospital in Boston Ma. waiting for her gift of life, a heart.
So many people encouraged me to turn my journal into a book.  After a long thought process, I decided to do it.  My goal for publishing our story is to help other’s that are living in the same situation we were in.  To help them feel they are not alone.  When we were living in the hospital, many miles away from family and friends, I felt very alone, scared and always wondering what the day would hold for us.  Is it going to be a good day or bad day?  Sitting there watching my daughter connected to so many machines, always feeling like I just want to take her and go home back to our life before this all happened. Asking God, “why” and to please help her, give her the strength to get through another day.  A mother should never have to watch her daughter live this type of life.
When I finally decided to write my book, it was very hard.  I was reliving every day over and over again.  It took me two years to complete the process.  I found a great editor to work with to help perfect the final product.
So now the manuscript is now in book form, time to find a publisher.  I self published from the company Createspace.  This company took me through the process of creating my book cover and formatting my book the way I envisioned it.
I highly recommend this company if someone wants to self publish a book.
I released my book for sale in August 2017, since then it is now selling on Amazon, (paperback and kindle versions), Shop on the Pike Gift Shop in Brigham and Women’s Hospital gift shop and also Odyssey Bookshop.
I am hoping this book will help people understand the organ transplant process and the importance of becoming an organ donor.

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TO SUM IT UP:
I have slept in a hospital chair, window sills and couches.  Skipped meals and cried from fear.  I have become an expert on Lauren’s condition.  I am a strong advocate that had to make life changing decisions.
​    I am a parent of a medically complex Warrior !!!​Lynne Robitaille

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big day tomorrow


Tomorrow I am hoping all goes well, and I will have a big announcement to make!!  I have a meeting about my book “Strength in a Heartbeat, Diary of a Heart Transplant”.

Wish me Luck

Lynne

Meaning of New Heart=New Beginnings


New Heart = New Beginnings

I started this site after Lauren had her heart transplant and we were home.  I thought the title was appropriate.  New Heart is self explanatory, but New Beginnings takes on it’s own meaning.  I never knew what life had in store for us.  All I knew was we had a new beginning in life.

It has been a little over two years since Lauren received her new heart.  Medically Lauren is doing fantastic.  We have had a couple of bumps in the road, but Lauren being Lauren, she has tackled the obstacles and is moving forward in life.  I am so proud of the strength she has and is an inspiration to me and anyone she comes in contact with.  Lauren is now very active in the American Heart Go Red For Women Association and also Donate Life Organization.  Going out with friends, going to the gym, just living life.

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In my next post I have some very exciting news about what Lauren has been up to …….

In the past two years, New Beginnings has had it’s ups and downs.   When Lauren was in the hospital, as a parent you experienced and have seen things a parent should never have to go through, but when you don’t have a choice, you just do what you need to do.

For the past couple of years, this is what I would see in my mind:

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I was always afraid something would happen and we would end up back in the hospital.  Always afraid the heart would reject, then having to start the process all over again.  Hearing the sounds of the machines, nurses in the room all the time, sleeping on whatever is available.  A part of me always lived in fear, for my daughter and myself.  Not to mention, my husband who would travel every weekend to be with us.

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At the beginning, those feeling are so understandable.   When a parent see’s their child in this condition, words cannot describe an emotion you feel.  You just pray that this nightmare will be over soon and the two of you will be walking out the hospital doors soon.

Well, it’s been two years now and I can honestly say this vision is finally fading away.  Yes it took little over two years for me to believe that, that is our past.

I am writing this to release feeling that I have been harboring within me.  You can say this is my release of memories that have given me nightmare, anxiety and the past.  I need to put the past in the past and life for the future.

To all my friends that I have pushed aside, I am sorry.  My breaking point was when Dean, Lauren and I took a trip to Florida for my sister’s birthday.  My mother was there and I can say we got into a conversation about Lauren and how I have been feeling and acting.  She told me I probably need counseling, to help me.  I got upset and said I didn’t.  Well, after that conversation, I did a lot of soul searching and my mother was right.  I didn’t get counseling, I thought long and hard about how I have been acting.  I had to realize Lauren was OK.  She wasn’t going to be rushed to the hospital.  Lauren is 25 years old and she doesn’t need her mother worrying all the time about her.  Lauren needs to be 25.

Since realizing Lauren is OK, I have been able to think about my life.  I need to reconnect to friends I haven spoken with in quite a while.  Need to focus on my husband more.  Lauren is 25, so my husband and I can start doing more things together as a couple.

With this say, Lynne is moving forward, thanks mom for opening my eyes

Surgery again in our household, Lynne’s story


Yes, I’m having surgery tomorrow morning.  January has been a hell of a month for us.  I’ve taken take of my daughter now it’s my turn to take care of myself.

About 8 weeks ago, I started to experience pain in my back that traveled down into my right leg.  Didn’t think much of it, until it started to get worse with no relief.  I finally had to call my Dr.  A couple of years ago, I was experiencing lower back pain.  I was diagnosed with Degenerative Disc Disease‎.  I did physical therapy and it went away.  But now it is back.

First they tried me with 800mg of ibuprofen.  The pain just kept getting worse.  Then they gave me prednisone which is a steroid for 5 days.  Nothing.  After that I received muscle relaxers to help.  This was around Christmas time now.  I can honestly say, it ruined my Christmas.  I had a couple of mimosa’s in the morning trying to enjoy my Christmas morning with my family, but it is true you cannot mix booze with muscle relaxers.  Let’s just say, I worked so hard to have a beautiful Christmas for my family and it did not turn out that way.

Went back to my Dr. and now they had me go for an MRI.  At this point the pain was just ongoing.  Every moment of the day, it has been getting stronger and stronger.  I cannot sleep, and if I do I end up waking up around 2-3 in the morning with pain that I have to stay up.  Laying down makes it throb more.  When I had the MRI done, it was so painful.   I could not lay still, my back and leg kept going into spasms.  I had to just bite down on my lip and keep telling myself you can do this.  The whole time I was having this done, I kept thinking about my daughter and all the procedures she had to endure.  If she could go through the hell she went through, then I could do this.

Results from the MRI came in. I was on the phone with my Dr. and she said “normally I would have you come into my office to talk, there seems to be a mass on your spine”.  I really wasn’t sure I heard her correctly so I said to her, “are you saying that I might have the C word. (I couldn’t say the word).  She wanted me to see an Neural Surgeon.  I just sat there and cried, I felt like my whole world just ended.  About an hour after I got off the phone with my Dr., my phone rang and it was the surgeons office calling.  They wanted me to come in that day.  Now I was really scared.  Called my husband  and he was home before I could get myself together enough to be able to talk.  We went to the office and to our relief, it is not a mass.  I have 2 herniated disks that is hitting my sciatic nerve and the image she saw was my bone protruding out a bit.  We scheduled the surgery but it was going to be 3 weeks away.  So for the last 3 weeks I have been living with a pain I wouldn’t wish on anyone.  They have me on percocets to help with the pain, but it is really not touching it.  This is how bad the pain is…Dean and I were invited to go to the Patriots playoff game.  Great seats so there wouldn’t be that much walking.  At first I said no, I was afraid I wouldn’t be able to walk it, but then said the hell with it, I can do this.  Well, I only lasted till half time.  Thank God we had a hotel room close to the stadium.

So tomorrow hopefully I will be able to get rid of the pain I have been living with.  When we went to the hospital with Lauren I actually had to use a wheelchair, I could walk the hospital.  I am very nervous about having back surgery, but I have no choice at this point. I guess it’s Lauren time to step up and take care of her mom for a bit.

So to all my friends out there, if you haven’t heard from me in awhile, this is the reason why.  Just staying in and trying to find positions that try to make me comfortable.

Wish me luck

Lauren told me, “you got this mom”.

Love Lynne  1437940979_love_valentines_day_11

Sum up Lauren’s last surgery


2 years after my daughter Lauren had heart transplant, in January Lauren had her yearly biopsy.  The biopsy came back no rejection, but they found she had  an arteriovenous (AV) fistula  which is an abnormal connection between an artery and a vein. Normally, blood flows from your arteries to your capillaries to your veins. After meeting with a Vascular surgeon, they scheduled surgery to correct the fistula.  Since Lauren’s transplant her blood flows have always been high, but the Dr.’s didn’t seem to concerned to much about it.  The main concern was the body wasn’t rejecting the heart. The surgery was scheduled a couple a weeks ago at Brigham and Women’s Hospital in Boston Ma.  We were told the surgery would be around 2 hours and they were going to admit Lauren in the hospital over night just for observation.

My husband Dean and I were nervous about Lauren having to go through another surgery after everything she has been through, in the back of our minds we knew there are always chances of complications with any surgery.  Not to mention how Lauren felt about another surgery.  The three of us talked and agreed it was going to be a quick surgery, and also Lauren wanted to be able to see some of the wonderful people that helped her get through her life changing experience again.

Every time I go back to Brigham’s I have anxiety, to many memories of when we were living there.  My husband has a wonderful way of keeping me and Lauren calm to get through it.  We are two lucky women to have him in our lives.

We arrived at the hospital 6:00 a.m., Lauren’s surgery was scheduled for 8:oo a.m.  When they took Lauren in, they told my husband they would be in contact with him with updates while we sat in the family room waiting.  After a couple of hours they called and said she was doing good, relief was all we felt.  You see, every time  she  has had surgery there was always complications so in our minds it was always there.  Well, this time was different.  To sum it up, Lauren’s surgery ended up taking 6 hours, not 2.  The original ultrasound showed one fistula, but they found 3.  They were able to fix 2 of them only, Lauren was in surgery to long and they didn’t want to keep her under any longer for safety reasons.  We were shocked to find out she 3.  The surgeon told us her blood pressures did improve enormously.  With all the procedures she had in the past couple of years, we were told they were really not that surprised, but it was something they didn’t expect to have to do. By 6:00p.m. we were able to see Lauren in the recovery room.  We were then told, her room wasn’t ready yet, it would be another couple of hours.  All we kept thinking was, OK it’s over and our daughter is going to be alright.  Big relief.

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So back to waiting.  Give my husband the remote and he’s a happy man.

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Lauren was suppose to stay in the Shapiro Building, but they didn’t have any rooms so they moved to the Towers Building.  I kept thinking Lauren was going to be upset, we never stayed there and she wouldn’t be able to see any familiar faces.  Come to find out it didn’t matter.  Lauren was so sick during the night, throwing up from all the meds she was given.  The room we stayed in was in the Pavilion Suites.  They really upgraded her.  This floor is for celebrities or you have to pay big time to be able to stay there.  Talk about a hospital room.  Imagine this, hardwood floors, cherry trim all around.  The menu could have been from a 5 star restaurant.  She deserved it.  But she didn’t know where she was until the next morning when she woke up.

This is how they served the meals, room service style.  Lauren’s breakfast.

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That morning we told Lauren about what happened during her surgery.  She was shocked to find out she was in surgery for 6 hours and she had 3 fistula’s instead of one.  Lauren did have quite a few visitors from the Shapiro Building that took care of her.  They found out where she was and everyone kept saying “wow, how did you get this floor”.  It made her feel very special and she was able to visit with old friends.

It was a long trip for my husband and I, but the end result was Lauren was doing great now.  Sore but good.  They took great care of her and we were told they are not concerned at this time about the last fistula they could not repair.  Maybe down the road, but not at this point.

It has been two weeks since her surgery, last Friday the three of us got back in the car and  had our appointment with Lauren’s surgeon for a follow-up.  All is good.  Lauren is still sore, but we were told it is normal healing.

Thank you Brigham and Women’s Hospital for taking great care of our daughter again.

With much love

Lynne, Dean & Lauren 1437940979_love_valentines_day_11

Spoke to soon yesterday, problems with medication


Yesterday, was how can I say was stressful.  Apparently the medication that was given to Lauren for her pneumonia did have an interaction with her other meds.  Lauren was very sick during the night, throwing up after taking the second dose.  There is a big lesson here.

I let me guard down.  Over the years I have learned, Dr’s. are not always right.  The quote “medicine is a science”, keeps popping into my head.  What works for one person doesn’t always work for the next person.  Everyone is different.  Yes, you need to trust your Dr., but there is nothing wrong with questioning their decision.  Before Lauren took the antibiotic that was subscribed to her, I should have done a little more homework on the medication first.  After doing so, I found that it interacts with a couple of her medications that she is presently on.  One being one of her rejection meds.  Not good.

These are the medications that Lauren takes every day, so keeping track of them could be like a full-time job.  When a new medication is introduced into the list, homework is a must.

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Lauren has Dr.’s here in Chicopee and also in Boston.  So yesterday, we had them do a conference call to each other to decide what is the best solution on how combat the right medication to clear up the pneumonia.  The whole time in the back of my mind I kept saying (please, no admission in the hospital).   The decision was made, they prescribed her prednisone. Prednisone is a corticosteroid. It prevents the release of substances in the body that cause inflammation. It also suppresses the immune system.    Lauren was on that medication at the beginning after her transplant, so I knew that it would not interact with any of her other meds.  Prednisone is a very strong steroid.  They only prescribed it for 3 day.  It has some strong side effects.  One to mention is shakes.  So the sooner Lauren is done with it the better.

Now this is important, I need to share.

When we were speaking with her Dr. here in Chicopee yesterday morning, explaining how Lauren felt, and after I looked up interaction with the medication they prescribed this is what the Dr. said to us.  “What pharmacy did you go to, it should have come up in their system with all the medication you take”.  It was told to us, it is a two point system.  First one is what a Dr. prescribes, then the pharmacist is the second to check if this should be prescribed.  I guess it is a good system, but before taking any new medication, you should personally question everything.  Inside I feel like I let my daughter down.  Between the two of us, this will never happen again, God willing.

When you are prescribed any type of medication from your Dr., question it.  What works for one person may not work for you.  We are all individuals, no two people are alike.  Here’s another quick tip.  When you go to the Dr’s., they are on a time schedule by law.  For an office appointments they are only scheduled 15 minutes per patient.  That is what the insurance companies allow.  Don’t let a Dr. rush you if you have questions.  The insurance companies dictate to the medical community to some point how to run their practice.  Don’t let them rush you out if you feel confused or if you have questions.  Remember you are the important person in that room.  It’s all about you. Get the right facts and information.

Lynne  1437940979_love_valentines_day_11

Parent’s experience PTSD: Post Traumatic Stress Disorder


I came across this article written by Barb Roessner.  For awhile I was starting to think I was just crazy or weak.  PTSD : post traumatic stress disorder is real.

Living in the hospital with my daughter for close to almost a year and a half, was very hard.  Always wondering and worrying with fear, no privacy and being closed in.  All my freedom was taken away. After writing that sentence, all I feel is guilt.  Oh my Lord, how my daughter must have felt.  As a parent, I had to be the strong one for Lauren.  I had to keep a smile on my face with tears from inside.  When she was feeling down, I would do something crazy, like just break out in a dance just to try to make her laugh.  She would say to me “your nuts mom”.  Now when I think of it, I guess I was nuts.  I was trying to cope with our situation also.

This picture was taken when we were watching a patriot’s football game.  I was rubbing Lauren’s feet to make her more comfortable, and I was wearing my Patriot’s hat.

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Living Life

PTSD is so real.  There is not, one day that I do not have a flash back or memory though about what has happened.  Some people say to me, you need to move forward.  I am, but the memories do not go away.  I guess I’m always afraid of going back.

To this day I still have a hard time going to a store, I can only stay in there for a short period of time, then I start to have anxiety, I do not like to be in close places anymore.  Also, I have a hard time leaving my house.  My house is my security.  When I am home all is well.  I know with time, it will get better but that saying “NO PLACE LIKE HOME” is so true.

Can Parents Experience PTSD from Their Child’s Heart Condition?
Written by: Barb Roessner

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When most people think of post-traumatic stress disorder (PTSD), they imagine military veterans returning home from combat. Soldiers have been so exposed to human tragedy, their minds become conditioned to fight or flee, and surprising things—a firework exploding, someone dropping a book on the bus—could transport them back to the battlefield without warning.

People with PTSD may have trouble sleeping and struggle with constant anxiety. They feel like they’re on alert every second and struggle with memories of the traumatic events that are vivid enough to feel as if they’re happening to them again, according to the U.S. Department of Veterans Affairs.

But PTSD doesn’t just affect veterans. It can develop in individuals who have experienced any type of trauma—including parents who are watching their children struggle with a serious heart condition.

No, they are not in the midst of violence. And no, they are not bearing the medical burden of the heart condition. But the parents feel the agony of their child’s illness as if they are going through it themselves. They may always fear a meeting with a doctor, having heard the worst there before. Or they might forever associate their child crying in the night with a moment when the disease was especially trying.

Honestly, I think all families of kids with heart conditions have PTSD to varying degrees.

Think about it: the official definition of PTSD from the American Psychiatric Association doesn’t only include those who experience the trauma, but also those who witness it.

For families whose children have serious heart conditions, the parents’ stress level is high and rising all the time. We have cared for some families in which one or both of the parents sought treatment for PTSD. This usually happens during the waiting period: that time between being placed on the heart transplant list and actually getting a heart.

During that period, parents are on edge. They are constantly wondering when or if their child will receive a new heart in time. Then, they are faced with close calls that trigger their stress level to spike even higher, including:

Stroke
Kids with complex congenital heart conditions are at a higher risk of stroke. And not just 1 stroke, but they are at higher risk for recurrent strokes, according to a July 2012 study in the journal Annals of Neurology. Because their hearts are not functioning at their best, blockages can sometimes prevent blood from being pumped to the brain. Just like when anyone else has a stroke, this could cause serious disability or be life-threatening.

Cardiac arrest
Sudden cardiac arrest is a technical way of saying that the heart stops functioning. Congenital heart diseases—namely cardiomyopathy—are among the top reasons why children go into sudden cardiac arrest, according to a March 2012 study in the journal Pediatrics.

Extended waiting
Children listed for a heart transplant are more likely to pass away waiting than people waiting for any other type of solid organ transplant, according to a February 2009 study in the journal Circulation. As time goes by, the wait wears on parents, and it doesn’t get easier. That could be because one of the key risk factors for PTSD is feeling powerless, according to the U.S. Department of Veterans Affairs.

Then, there’s all the other complications that can happen. Some children have to have limbs amputated because of poor blood circulation. Some parents have literally watched their children stop breathing, turn blue and then had to entrust them to doctors and machines on faith that they’ll see them alive again.

For parents in any of these situations, when it’s a child—your child—you might as well be in the throes of a violent assault. The stress response is about the same.

I’ve only mentioned the medical complications. Let’s not forget about the strain on marriages, the financial burden that leads some families to bankruptcy and the issues that can arise with other children.

Why Addressing PTSD is So Important
The long-term issues of unchecked PTSD are serious, mainly because a prolonged fight or flight response is so taxing on the body.

Think about it: Your body is gearing up to protect itself from what it perceives to be an attack. The heart rate spikes to get more blood to your muscles, according to the National Alliance on Mental Illness.

Breathing speeds up, sometimes to the point of hyperventilating. Blood sugar spikes. If the body experiences this stress response too much, it could develop into long-term problems with high blood pressure.

This article is so true.

If you know someone who is in this situation please pass this on.  They are not alone.

Lynne 1437940979_love_valentines_day_11