Anything is possible
heart transplant, inspirational story, organ transplant, motivational story, kidney transplant
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.
"Shop" Brand New Page was created and posted just a couple of days ago. Lauren and I have been working with a company in designing an organ transplant lapel pin. A lot of time and love went into the design and we are very proud of the product we have created. We created a Heart, Kidney and Lung lapel pin. They are called
"Miracle Guardian Angel Wings"
Wear your Miracle Wings to show your support for a friend or loved one waiting for their miracle, the gift of life, an Organ Transplant. If the Gift of Life has been received already, wear your Angel Wing Pin to keep your Guardian Angel close.
Measures : 1 1/2 length, 1/2 wide Lapel Pin style, Comes with backing and delivered in a sachet bag for gift giving.
Perfect for coats, handbags, hats, anywhere you would like to keep it close to you.
Looking for a Medical Fundraising Idea
Miracle Guardian Angle Wing Pins are perfect for a medical fundraising. Great way to show support, and can become a conversational piece to help you raise medical funds.
Special fundraising pricing available.
Fill out contact page with your info and I will be happy to discuss your fundraising pricing.
You hold your family together. Your energy seems boundless; your commitment is palpable. I was convinced that you could do no more and then you agreed to become a family member caregiver.. Now your work is never finished. When she cries out to you in the middle and you respond, with patience and kindness. We call you a family caregiver but this label doesn’t feel quite right—you say you are a mother, wife, sister and daughter first. It is clear that caregiving is in your soul, but it does not define you.
You are tenacious but humble. You ask for nothing in return for your efforts but your face lights up to small gestures of gratitude. You demonstrate compassion in the face of constant exhaustion. You cook, clean, transport, and translate. You reconcile and administer medicines, pay bills, act as health care proxy and power of attorney. You maintain a career despite spending as many hours each week managing family and coordinating care as you do at work. You prove that grace is not just a word but a state of being.
Increasingly, you compromise taking care of yourself, always putting others first. Your fatigue has led to poor eating habits and weight loss. You are becoming more isolated from friends and family. You recently expressed your loneliness and I am concerned about what that implies. You will always trade things most precious to you in favor of those you love, who always seem to need more.
You and 44 million of your fellow caregivers around the country are the foundation of our healthcare system, providing over $500 billion each year of uncompensated care. Without that commitment, our very society would be in peril. As Americans, we all owe you a debt of gratitude.
I am proud to know you. Thank you for your service to our country.
Thomas P. Riley
Chief Executive Officer and President Seniorlink
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.
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.
Happy National Caregiver's Month
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:
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.
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.
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.
Lauren speaking at the
Strength in a Heartbeat, Diary of a Heart Transplant
Read our personal journey on the heart transplant list