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.
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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.
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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:

• Kidney function: the medications can affect the kidneys. We are checking to make sure that the medication levels are high enough to prevent rejection but low enough to not injure the kidneys.
• Immune system response: transplant medications can negatively affect your  white blood cell count, which can make more susceptible to infection and rejection.

            Understand that a heart transplant comes with a lifestyle adjustments.

                  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.
           

             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.
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 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.

            My daughter Lauren,  had her heart and kidney transplant on May 17, 2018.  The first 4 weeks after transplant, she needed to have biopsies every week. At this time Lauren needs to have her biopsies once a month.
         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.
       Schedule for biopsies after transplant:

• Month 2 post-transplant — every other week.
• Months 3 to 6 post-transplant — once a month.
• Months 7 to 12 post-transplant — every other month.

             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 this last one.                                                                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 medication changes.  They are doing blood work now every week, with medication changes to much rejection meds could hurt other organs, which could cause so many new problems.  If the medication changes don't work, then Lauren would have to be hospitalized to have her blood filtered to clean out the antibodies.  Hospital stay could be 3-5 days.

Below is a grading of biopsy rejections:
 **Grading rejectionThe 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.

• Acute Cellular Rejection (ACR)
  0 = No evidence of rejection (NER)
  1R= mild rejection
  2R= moderate rejection
  3R= Severe rejection.
• Antibody-mediated rejection (AMR): Is a type of late or chronic rejection.  It represents a continuum of humoral responses to the cardiac allograft. AMR is diagnosed by both the biopsy and by the detection of antibodies specific to the donor in the blood.

              Transplantation is the act of transferring cells, tissues, or organs from one site to another. The malfunction of an organ system can be corrected with transplantation of an organ (eg, kidney, liver, heart, lung, or pancreas) from a donor. However, the immune system remains the most formidable barrier to transplantation as a routine medical treatment. The immune system has developed elaborate and effective mechanisms to combat foreign agents. These mechanisms are also involved in the rejection of transplanted organs, which are recognized as foreign by the recipient's immune system.
         Understanding these mechanisms is important, as it aids in understanding the clinical features of rejection and, hence, in making an early diagnosis and delivering appropriate treatment. Knowledge of these mechanisms is also critical in developing strategies to minimize rejection and in developing new drugs and treatments that blunt the effects of the immune system on transplanted organs, thereby ensuring longer survival of these organs.

           I have to say this, when we found out Lauren's biopsy came back with rejection, called AMR, we were scared.  And when we were told Lauren might have to be hospitalized, PTSD set in.  I kept thinking, what do we pack, how long will we be there.  I know what the Dr's say, but we know how things really happen.  3 - 5 days could lead to 10- plus days.  Also I have been trying my best to take care of things around the house, if I'm not going to be here.  As you all know, when Lauren goes into the hospital I go with her.  It's a scary and lonely place to be.  We travel as a team.  
             We are home, and the plan is to stay here for now.  Lauren is having her next biopsy in three weeks.  Pray for no rejection.  

             Now onto a new subject, me.  I have been experiencing some stomach issues for the past month. I have had complete blood work-up, urine and stool tests.  Yesterday I had a CT Scan done, just waiting for results. At this time, I have no idea what is going on with me.  Hopefully some answers soon.  Time to take care of myself.

            I have added a new page to my website,  Care & Support.  This page is dedicated in helping families with their medical fundraising needs, please check it out.   When being diagnosed with a life threatening illness is one thing, then to add the financial burden, can really put a family over the top.  Every little donation helps.