To Remember Me – I Will Live Forever please take a moment to read


I came across this short story, written by Robert Noel Test.

If you are still wondering if you should sign up to become and organ donor, please read this.  It might put your concerns into perspective.

To Remember Me – I Will Live Forever
by Robert Noel Test (1926-1994)

The day will come when my body will lie upon a white sheet neatly tucked under four corners of a mattress located in a hospital; busily occupied with the living and the dying. At a certain moment a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped.

When that happens, do not attempt to instill artificial life into my body by the use of a machine. And don’t call this my deathbed. Let it be called the bed of life, and let my body be taken from it to help others lead fuller lives.

Give my sight to the man who has never seen a sunrise, a baby’s face or love in the eyes of a woman.
Give my heart to a person whose own heart has caused nothing but endless days of pain.
Give my blood to the teenager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play.
Give my kidneys to the one who depends on a machine to exist from week to week.
Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk. Explore every corner of my brain.
Take my cells, if necessary, and let them grow so that, someday a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain agianst her window.
Burn what is left of me and scatter the ashes to the winds to help the flowers grow.
If you must bury something, let it be my faults, my weakness and all prejudice against my fellow man.
Give my sins to the devil.
Give my soul to God.
If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you. If you do all I have asked, I will live forever.

About the Author
Robert N. Test was one of the pioneers in promoting organ and tissue donations. In 1976, he wrote an essay titled “To Remember Me.” It was first published in The Cincinnati Post and later in Ann Landers’ column, as well as in Reader’s Digest.

Lynne

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Rainy day, time to jump in puddles


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There are times when I enjoy a rainy day.  Today, here in Massachusetts, it’s one of those days.

Rainy day’s remind me of when Lauren was in the hospital.  When it was raining she told a friend of ours Norm, that all she wants to do is jump in puddles again.  He talked with her for quite a while to boost her spirits and then told her when she gets out of the hospital they would jump in puddles together.

The day we were released from  the hospital, when we pulled into our driveway, there was a huge balloon saying “welcome home Lauren” and also they were tied to a pair of yellow rain boots.

I thought it was the most thoughtful gift.  Norm remembered the conversation and went out of his way to do this.

When we had a welcome home party for Lauren, now this was a big party.  We had it at a hall,( they donated it to us), I can say there must have been over 300 people who showed up.  When people enter, we brought the yellow rain boots and put them in the entry.  Those yellow boots mean a lot to Lauren.  They are now a reminder of how many people love her and of this special man who gave her encouragement through her journey.

So Norm, Lauren has her boots on today……..

Enjoy the day and when it rains, go outside and jump in puddles because you can.

Lynne

The weekend is here !!!!!!!!!!!!!!


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Time to relax, with a big cold one.

About 3 months ago the weekend really didn’t mean that much to me.  You see, I stay at home taking care of my daughter.  Even though she is 25 years old, I am listed as her caretaker.  Lauren has a form of MD, so she still isn’t as strong as she used to be before her heart transplant. As a caregiver for Lauren, the weekends don’t mean anything to me.  That part of my life is the same no matter what day it is.

But, now this is a big but, the weekends do mean, take some time for myself.  Couple of months ago, my husband blatantly told me I am entitled to enjoy the weekends.  He has been telling me this for a while, but I finally listened to him.  In that content, to me it means….no laundry, no yard work, no mopping the floors, no ironing, anything that I can get done during the week when he is at work, so on the weekend we can relax together.  It was hard at the beginning, but I put a schedule together on certain days, all the choir are to be done.

I can honestly say, I am not the type of person who knows how to relax.  I always have to be doing something.  I always felt guilty if I was just chilling out.  I had to learn, I’m entitled to relax just like everyone else.

So, I learned how to do this. Now I can sit by the pool with my husband, or watch a movie on a lazy Saturday.

With that being said

Enjoy your WEEKEND

LYNNE

Echo Donate Life


Please take a minute to read this post……

ECHO, which stands for :  Every Community Has Opportunity

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The Association for Multicultural Affairs in Transplantation (AMAT) Teams Up with Donate Life America (DLA) to Launch New National Observance: Donate Life ECHO

(Richmond, VA—July 6, 2015)—The Association for Multicultural Affairs in Transplantation (AMAT) and Donate Life America (DLA) are joining forces to launch “Donate Life ECHO,” a new national observance designed to reach multicultural communities. ECHO, which stands for: Every Community Has Opportunity, is being launched to bolster engagement with African American, Asian/Pacific Islander, Latino, and other multicultural communities.

The new observance, ECHO, has two objectives: one is to focus on the power of sharing one’s personal decision to register as an organ, eye and tissue donor with members of one’s community; the second is to encourage registered donors to ask members of their personal networks and extended communities to register as donors. Through the ECHO concept of reiteration and repetition—with people sharing the life-affirming message of donation within their community—more lives will be saved and healed.

“This strategic initiative is about empowering individuals to echo the message of donation throughout their respective communities, while building momentum together,” said Remonia Chapman, president of AMAT. “We are delighted to collaborate with DLA for this groundbreaking effort to equip people from all backgrounds with a host of culturally relevant tools and resources that have been designed to foster meaningful conversations and personal testimonies about the vitally important health topic of organ, eye and tissue donation and transplantation.”

The two-week observance will be held during the second and third full weeks in July. This year’s inaugural observance will be held July 12 – July 25. ECHO is not intended to replace current programs and commemorations; rather, it offers a new mid-year opportunity with tremendous social media and community potential. As nearly 60 percent of the current U.S. transplant waiting list is comprised of ethnically diverse patients, the need for increased education efforts and new strategic approaches is a critical step toward increasing the number of registered donors in multicultural communities.

David Fleming, DLA President and CEO, added: “DLA is excited to be working with AMAT on this new observance, which has the potential to reach specific communities in an innovative way. It is no coincidence that the words ‘community’ and ‘opportunity’ both include the word ‘unity,’ as together, we can create lifesaving change. This transformative observance highlights that great good that can come from sharing the importance of registering as a donor with our family, friends and communities.”

The new observance will be translated into multiple languages, including Spanish. Done Vida ECO, which stands for Esperanza, Comunidad y Oportunidad, translates to “hope,” “community,” and “opportunity.” Together, AMAT and DLA will offer a Donate Life ECHO digital toolkit that will include: social media banners, graphics, talking points, and an array of resources that can be customized for specific audiences. To learn more, visit: http://www.amat1.org/programs/echo and http://www.DonateLife.net/echo.

About the Association of Multicultural Affairs in Transplantation (AMAT)
AMAT was established in 1992 to address the increasing need for organ and tissue donors in the multicultural communities while simultaneously offering support, shared expertise and professional development opportunities for its members as they save and heal lives. AMAT is a self-sustaining, self-governed organization operating solely on voluntary contributions from individuals, corporations, and other affiliated organizations. For more information, visit: http://www.AMAT1.org.

About Donate Life America (DLA)
Donate Life America is a 501(c)3 not-for-profit alliance of national organizations and Donate Life State Teams across the United States committed to saving and healing lives through increased organ, eye and tissue donation. Donate Life America, with the help of its corporate partners, is dedicated to spreading the word about the importance of being a registered donor so that others may live. For more information, visit: http://www.DonateLife.net.

Media Contacts:

AMAT
Ayanna Anderson, Public Relations Chair
aanderson [at] dnwest [dot] org, Ph: (510) 251.7003
Donate Life America
Aaron Kelchner
akelchner [at] donatelife [dot] net, Ph: (804) 377.3584

Friendships, old and new


Friendships……we all have them.  Some are close and some are distant.  Some are family members and some are people you haven never met face to face.

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When I think of all the friends I have, my mind thinks of everyone I care about.  I am blessed to be able to say that my husband IS my best friend.

I have 2 girlfriends that I have been friends with for over a decade.  We may not talk everyday or even for weeks, but I know they are there for me and I will always be there for them, no matter what.

My daughter, Lauren calls me her best friend.   We have been through much together.  Not only mother daughter stuff, but just hanging out together.  I feel we have a very special relationship.

Then I have special neighbors I call friends.  Again, I can say I am very blessed to live in the best neighborhood in the world.

And now I have many new friends, that I have met writing this blog.  I can honestly say I know people all over the world.

 When I meet  someone who has gone through some life experiences similar to mine, there is a bond we share.  Then a friendship begins.

In writing this post, I  would like to say, it really made me stop many times to   think of everyone I love, family and friends.  I would not be the person I am today without them.

Much Love, Lynne

Being totally exhausted


This is how I feel today….

Exhausted

Have you ever felt this way?

I know that most of you answer yes to this.  It is normal, life is exhausting.  Being physical or emotional or at times just both.  Today, I’m emotionally exhausted.  The last couple of days did me in.

Sometimes I just sit back and think, oh you are stronger than this, hell you spent almost 2 years living in a hospital with your daughter.  Seeing my husband only on weekends, then dealing with watching my daughter at the beginning get weaker, then after the transplant watching her struggle to get better.

The nightmares do not go away, they fade, but they are always there.  Whenever Lauren has a procedure done, it takes so much out of me.  I say to myself, “I can’t do that again”, but if I needed to, I know I would be able to find the strength.

All the news was good, so it’s time to take a deep breath and take a little time for myself.  I think I only need an hour or two.  Maybe, I need to watch a good Life Time movie to relax.

All of our lives are different, some the same in ways and others totally different, but I do know we all get emotionally exhausted at times, no matter who we are.  And I guess that’s ok.

MAKE THE MOST OF TODAY AND TRY TO MAKE TOMORROW BETTER.

Thanks for listening

Lynne

Today is the waiting day, Lauren’s biopsy results……….


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Yesterday, Lauren had her heart biopsy.  Off to Boston.  Her last biopsy was 3 months ago all  good.  Lauren had her heart transplant on Dec. 30, 2013. Since the transplant she has had 2 slight rejections, the dr.’s told us that is normal.  Well, it might be normal to have a slight rejection, those are the words you do not want to hear.  They needed to adjust her medication to correct rejection.  The rejections were at the beginning of her journey after transplant, we haven’t had one in a while.  Thank God.

If you read my last post, it explains the biopsy process.  When a body receives a new organ through transplant it will always see it as a foreign organ.  That is why a recipient must always take rejection medication every day.

So anyway, it was a long day yesterday for Lauren.  Biopsy, echo, then a visit to the clinic to talk with the dr.  From what they saw everything looks good.  Her pressures where a little high, but they always have been.  After the biopsy, they send it to the lab and check for rejection.  That process takes 24 hours.  So, by the end of the day we will receive a phone call with the news.  Please, say a prayer…no rejection.

Lynne

Heart Transplant Biopsy Overview Why & How


Right Heart Catheterization with Heart Tissue Biopsy
(Heart Biopsy, Right Heart Cath with Biopsy)

Procedure overview

What is a right heart catheterization with heart tissue biopsy?

Right heart catheterization (often abbreviated as right heart cath) with heart tissue biopsy is a procedure in which tissue samples are taken directly from the heart muscle. This procedure may be done to see if the heart tissue is normal.

In a right heart cath, the doctor guides a special catheter (a small, thin tube) called a pulmonary artery (PA) catheter into the right side of the heart and passes it into the pulmonary artery, the main artery carrying blood to the lungs. As the catheter is advanced into the pulmonary artery, the doctor measures pressures in the right atrium (right upper heart chamber) and right ventricle (right lower heart chamber). In some cases, the doctor gives IV heart medications during the right heart cath to see how the heart responds. For example, if the pressure is high in the pulmonary artery, the doctor may give medications to dilate, or relax, the blood vessels in the lungs and help lower the pressure. Several pressure “readings” will be done during the procedure to measure your body’s response to the medications.

Indirect measurements of pressures in the left side of the heart can be made by inflating a small balloon at the tip of the catheter as well. The pressure detected in front of the balloon is known as the pulmonary capillary “wedge” pressure (PCWP), or pulmonary artery occlusion pressure (PAOP). The cardiac output, or the amount of blood pumped by the heart per minute, is also determined during a right heart catheterization.

The biopsy portion of the procedure is usually performed at the end of a right heart cath. The doctor inserts a special catheter with a small tool called a bioptome into a vein, usually in the neck, and passes it into the right ventricle. Under X-ray guidance, the doctor uses the biopsy catheter to take tissue samples usually from the right ventricle. The tiny pieces of heart tissue are sent to the lab to be examined under a microscope. Special doctors, known as pathologists, will examine the tissue under a microscope for evidence of infection, inflammation, and abnormal cells.

Reasons for the procedure

A biopsy may be done to:

Diagnose of the cause of heart failure or heart disease, such as dilated cardiomyopathy caused by bacterial or viral infection or restrictive cardiomyopathy that can be caused by many different pathological processes. Knowing the cause of heart failure can help to determine the treatment plan.

Evaluate heart tissue after a heart transplant to make sure that the body is not rejecting the transplanted (donor) heart.

A right heart cath with biopsy may also be necessary as part of the evaluation before a heart transplant. Pressures in the lungs need to be as low as possible in order for a donor heart to work as well as possible. Excessive pressures will make it difficult for the new (donor) heart to pump effectively. A right heart cath will help to see if pulmonary pressures can be decreased with special medications (vasodilators) to ensure successful transplantation.

Your doctor may have other reasons to recommend a right heart cath with biopsy.

Risks of the procedure

Possible risks associated with a right heart catheterization with biopsy include:

Bruising of the skin at the site where the catheter is inserted

Excessive bleeding because of puncture of the vein during insertion of the catheter

Pneumothorax (partial collapse of the lung) if the neck or chest veins are used to insert the catheter

Perforation of the wall of the heart after pieces of tissue are removed from the ventricle (the lower pumping chamber of the heart)

Other rare complications may include:

Abnormal heart rhythms, such as ventricular tachycardia (fast heart rate in the lower heart chambers)

Cardiac tamponade (fluid buildup around the heart that affects the heart’s ability to pump blood effectively)

Low blood pressure

Tricuspid valve damage (the valve on the right side of the heart)

Infection

Air embolism (air leaking into the heart or chest area)

Blood clots at the tip of the catheter that can block blood flow

Pulmonary artery rupture (damage to the main artery in the lung, which can result in serious bleeding, making it difficult to breathe)

Nerve damage

For some patients, having to lie still on the cardiac catheterization table for the length of the procedure may cause some discomfort or back pain.

There may be other risks, depending on your specific medical condition. Be sure to discuss any concerns with your doctor before the procedure.

Before the procedure

Your doctor will explain the procedure to you and offer you the opportunity to ask any questions that you might have about the procedure.

You will be asked to sign a consent form that gives your permission to do the test. Read the form carefully and ask questions if something is not clear.

Notify your doctor if you are sensitive to or are allergic to any medications, latex, tape, or anesthetic agents (local and general).

If you are pregnant or suspect you may be pregnant, you should notify your doctor.

Notify your doctor of all medications (prescription and over-the-counter) and herbal supplements that you are taking.

Notify your doctor if you have a history of bleeding disorders or if you are taking any anticoagulant (blood-thinning) medications such as warfarin, aspirin, or other medications that affect blood clotting. It may be necessary for you to stop some of these medications prior to the procedure.

Notify your doctor if you have a pacemaker or an implantable defibrillator (ICD).

If you have an artificial heart valve, your doctor will decide if you should stop taking warfarin prior to the procedure.

You may be asked not to eat or drink anything after midnight or within eight hours before the procedure.

Based upon your medical condition, your doctor may request other specific preparation.

During the procedure

View of man’s chest and a close-up image of the heart showing position of catheter.
Click Image to Enlarge
The right heart cath with biopsy will be done in the cardiac catheterization lab or in a special department. In critically ill patients, the test may be done in the intensive care unit (ICU). A right heart cath may be performed on an outpatient basis or as part of your hospital stay. The procedure may vary depending on your condition and your doctor’s practices.

You will be asked to remove any jewelry or other objects that may interfere with the procedure. You may wear your dentures or hearing aids if you use either of these.

You will be asked to remove your clothing and will be given a gown to wear.

You will be asked to empty your bladder before the procedure.

An IV line will be started in your hand or arm before the procedure for injection of medication and to administer IV fluids, if needed.

You will lie on your back on the procedure table.

You will be connected to an ECG monitor that records the electrical activity of the heart during the procedure using small, adhesive electrodes. Your vital signs (heart rate, blood pressure, breathing rate, and oxygenation level) will be monitored closely during the procedure.

Sedation is generally not required for this procedure, but you may be given a medication to help you relax.

If the neck vein is to be used, you will be asked to turn your head away from the insertion site to help the doctor locate the proper location to insert the catheter.

Sterile towels will be place over your chest and neck if your neck vein is used.

If your groin is used, sterile towels will be place over the groin area.

The skin over the insertion site will be cleaned and numbed with a local anesthetic. A small needle will be used to find the vein and then a thin tube called a catheter will eventually be inserted into the vein. You may feel some burning or stinging when the numbing medication is given and some pressure when the needle is used to puncture the vein.

An introducer sheath (a slightly larger, hollow tube) will be placed into the vein first and then the biopsy catheter will be inserted through the introducer. You may feel some pressure as the introducer is placed. You may hear sounds as tissue samples are taken from the heart, but you should not feel any pain. Only a very small amount of tissue is taken for the biopsy.

You may feel a pulling or tugging sensation when the tissue sample is obtained.

If a right heart cath is done at the same time, a PA catheter will be placed through the right atrium, right ventricle, and into the pulmonary artery. Heart and lung pressures will be measured. Special medications may be given through the IV to evaluate the heart’s response. It may take about 30 minutes to monitor the heart’s response to the medications.

Once the tissue samples and heart pressure information has been obtained, the catheter and introducer will be removed, unless your doctors decide you need additional monitoring in the ICU.

After the procedure

In the hospital

Medical staff will put pressure over the insertion site for a minute or two to make sure that you are not bleeding. If the catheter was placed in your groin vein, pressure will be placed over the insertion site for a few minutes longer.

If the neck vein is used (most commonly), you will be allowed to sit up comfortably. If the groin is used for the procedure, you will have to lie flat in bed for a few hours so the puncture site can heal properly.

You can eat and drink normally after the procedure. The nurse will monitor the insertion site for bleeding and check your blood pressure, heart rate, and breathing while you recover. Let the nurse know if you have any chest pain or difficulty breathing.

The biopsy samples will be sent to a lab for final evaluation; this may take a few days. Your doctor will discuss the results right heart cath and the plan for treatment if needed.

The length of time you will be required to stay after the procedure will depend on the location of the insertion site. If a neck vein is used, you may be discharged very quickly if bleeding from the site stops within a few minutes. If a groin site is used, you will be kept for a few hours to make sure bleeding from the site has stopped.

At home

Once at home, you should monitor the insertion site for bleeding, unusual pain, swelling, and abnormal discoloration or temperature change at or near the insertion site. A small bruise is normal. If you notice a constant or large amount of blood at the site that cannot be contained with a small bandage, or dressing, notify your doctor.

It will be important to keep the insertion site clean and dry. Your doctor will give you specific bathing instructions.

You may be advised not to participate in any strenuous activities. Your doctor will instruct you about when you can return to work and resume normal activities.

Notify your doctor to report any of the following:

Shortness of breath or difficulty breathing

Fever and/or chills

Increased pain, redness, swelling, or bleeding or other drainage from the insertion site

Coolness, numbness and/or tingling, or other changes in the affected extremity

Chest pain/pressure, nausea and/or vomiting, profuse sweating, dizziness, and/or fainting

Your doctor may give you additional or alternate instructions after the procedure, depending on your particular situation.