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Dear Abbey — An Australian Profile in Courage


Abbey Jones of AustraliaAbbey Jones is a lovely 21 year old woman who lives in Sydney Australia but Abbey doesn’t have the life of other 21 year olds because  she has an almost unpronounceable disease. It’s called  Bronchiectasis, a malady that seriously affects a person’s breathing.  Some say that the only way to explain what it’s like to have Bronchiectasis is to try breathing through a drinking straw all day and that’s what you would feel like on good days.  Cystic fibrosis causes about a third of all bronchiectasis cases in the United States.

According to the American Lung Association Bronchiectasis is a condition in which the lungs’ airways are abnormally stretched and widened. This stretching and widening is caused by mucus blockage. More and more mucus builds up in the airways, allowing bacteria to grow. This leads to infection.

Bronchiectasis can develop at any age. It begins most often in childhood, but symptoms may not appear until much later. Bronchiectasis can occur as part of a birth defect or as a result of injury or other diseases, like tuberculosis, pneumonia and influenza. It also can be caused by a blockage in your airways due to a growth or something you inhaled as a child such as a piece of a toy or peanut.

Bronchiectasis cannot be cured. But with proper treatment most people with bronchiectasis can live a normal life.  That last sentence may be true for some, but it sure hasn’t been true for Abbey.

When you look at the picture to the left  you would not suspect a thing is wrong with Abbey but this picture was taken on one of the few furloughs she’s had from the Intensive Care Unit which seems to be where she spends a good deal of her young life.

Abbey’s Bronchiectasis is further complicated by a rare form of asthma and she is subject to getting pneumonia quite frequently. I have only known Abbey for a few months and in that time she has had pneumonia twice and has only been out of the hospital for about three weeks.

Abbey and I met on Facebook. While she is not on a transplant list now, she has a keen awareness of donation/transplantation issues and is very familiar with almost all lung diseases.

Abbey prefers the picture above but this picture is one she also posted.Abbey Jones of Sydney Australia It is a the way she looks most of the time, connected by a serpentine maze of cords and tubes and wires and who knows what technology…but it keeps her alive and and her mind and imagination are always at work.

Like anyone with a debilitating disease Abbey has down days but for the most part her spirit is good and she talks about what she is experiencing.  Abbey has a blog.  Below are a few of her entries.  I think they will tell you a little about this brave, upbeat and inspirational young woman.   World…Meet Abbey Jones.

Spirometry

Posted on May 19, 2012 by

There it is, that little piece of equipment that will make or break.
That grey box labelled “cf clinic” i’ve gotten to know far too well- it defines me.
Its sides are curved for comfortable handling- if only it helped.
Buttons on its suface, my known of by heart MR number jabbed in – failure and decline.
Physio’s flick through years of results- finding a once healthy and satisfying FEV1 of 3.4L
As if the numbers weren’t enough. A small screen on top graphs the badness.
You can pinpoint it on the graph- a sharp dip, the exact moment airways collapse.
THEN just to throw in your face how much you suck- it shows your graph next to the ideal.

I look down at you, hoping i have what it takes to get a decent figure.
If i can do this- i get to go home.
A take the biggest breathe i can and blow into the white tube within you with all i have.
I can hear the rumble of rubbish in the bottom of my lungs as a try to squeeze out every last bit of air.
My face gets redder as i try harder. You keep beeping.
I wait for you to process. If only i could tweak something within you to show me something good.
Waiting, Waiting, Waiting.
BAM. FEV1- 1.49L
“try harder”

The Reality

Posted on May 19, 2012 by

I hear you from a mile away; I hear the badness,

I hear the thumping of the physios; the buzzing of the nebs,

And your laugh- although crackly and wheezy- full of joy.

You’re kept up night after night coughing;

You struggle day after day to walk up the 5 flights of stairs to your classroom.

Slowly- but surely- you are dying.

I can tell you are young; I can tell you have CF.

I can tell all this before you even open the curtain; because I have heard it before.

I watch you give it your best to make that spiro spit out a good number,

I watch you use PEP for until you are red in the face just hoping it will make a difference.

Ultimately though- both you and I know that your life will be cut devastatingly short.

All you can do is hope- hope that one day there will be a cure;

That one day you can live just as long as those who aren’t affected.

You share so much joy; it’s as if you have to fit it all into a shorter life span.

You share with others the kind of joy that comes with knowledge;

Knowledge that we should live everyday as if it is our first- not our last.

You know it’s the “hello’s” that are more important than any “goodbye”.

The transplant might kill you, it may give you 5 more years,

Yet unfortunately, In the end, CF is too strong, it thinks it has won the battle.

But you- you are the one that beat CF- you never let it stop you living life to the fullest.

For now, just keep breathing.

But when you are tired; when you can’t take it anymore- sleep, sleep forever and eternity in peace;

And say a big hello to a world so amazing you could never have imagined.

65 Roses

Posted on May 19, 2012 by

Living with cystic fibrosis is hard, uncomfortable and timeconsuming. A life potentially dominated by endless tablets, nebs, hospital admissions and physio; just in an attempt to extend the lifespan of the lungs.

What people manage to achieve despite the odds that are stacked against them is astounding. Recent research has lead to medication breakthroughs resulting in significantly increased life expectancy.

The 25th of May marks “65 Roses Day” where fundraising takes place and awareness of the condition is increased. The story of how the day came to be called “65 Roses” is really sweet and something I wanted to share:

65 Roses is what some children with CF call their disease because the words are much easier for them to pronounce. Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation USA in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary’s 4-year old son, Richard, listened closely to his mother as she made each call. After several calls, Richard came into the room and told his Mom, “I know what you are working for.” Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had Cystic Fibrosis. With some trepidation, Mary posed the question, What am I working for, Richard?”

You are working for 65 Roses,” he answered so sweetly. Mary was speechless. She went over to him and tenderly pressed his body to hers. He could not see the tears running down Mary’s cheeks as she stammered, Yes Richard, I’m working for 65 Roses.”

Blown Away

Posted on May 18, 2012 by

You take my breath away.
You leave me speechless.
You teach me what no one else can,
Yet I’d not recommend you even to the devil himself.

I hate you, I really do.
But I love you- I promise.
You’re special, very special.
So very special that I can’t make sense of you.

You’ve changed me,
You’ve given me insight,
You’ve granted me understanding
But please- I’ve had enough.

Please, just once- let me blow you away.
May you float among the clouds.
Me free of you, you free of me.
Just the way it is meant to be.

Abbey’s blogs can be found at  http://takemybreatheaway.wordpress.com/ Abbey has a page you can visit,too it is http://www.facebook.com/groups/411648502237896/?fref=ts

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

 Espanol

Bob Aronson Newheart de Bob es un receptor de trasplante cardiaco 2007, el fundador de Facebook, casi 2.500 Iniciativa miembro de Trasplante de Órganos y el autor de la mayoría de los blogs de donación / trasplante.

Puede comentar en el espacio proporcionado o por correo electrónico sus pensamientos a mí en bob@baronson.org. Y – por favor, difundir la palabra acerca de la necesidad inmediata de más donantes de órganos. No hay nada que puedas hacer lo que es de mayor importancia. Si usted convence a una persona de ser donante de órganos y tejidos puede salvar o afectar positivamente a más de 60 vidas. Algunas de esas vidas pueden ser personas que conoces y amas.

Por favor vea nuestro video “Gracias desde el fondo de mi corazón Donante” en http://www.organti.org Este video fue producido para promover la donación de órganos por lo que es libre y no se necesita permiso para su uso.

Si quieres correr la voz acerca de la donación de órganos personalmente, tenemos otra presentación de PowerPoint para su uso libre y sin permiso. Sólo tienes que ir a http://www.organti.org y haga clic en “Life Pass It On” en el lado izquierdo de la pantalla y luego sólo tienes que seguir las instrucciones. Esto no es un espectáculo independiente, sino que necesita un presentador pero es profesionalmente producida y sonido hechos. Si usted decide usar el programa le enviaré una copia gratuita de mi libro electrónico, “Cómo obtener un pie” O “que le ayudará con habilidades de presentación. Sólo tiene que escribir a bob@baronson.org y por lo general usted recibirá una copia del mismo día.

Además … hay más información sobre este sitio de blogs sobre otros donación / trasplante temas. Además nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos Cuantos más miembros que obtenemos mayor será nuestra influencia con los tomadores de decisiones.

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Transplants — With An Emphasis on Recovery (by organ)


The organs most commonly transplanted are Heart, Kidneys, Liver, Pancreas, Lungs and Intestines.  The entire process of organ transplantation is traumatic, from the time you are diagnosed  through the evaluation process, your time on the waiting list and finally recovery from the surgery.   If you are told you are going to need an organ transplant you are also being told that your life is about to change dramatically.

THE DIAGNOSIS

When you are diagnosed as needing a transplant you are being told that there are no good recovery alternatives for your disease.  It is likely that most of them have been tried.  While the physician is unlikely to tell you that your days are numbered you will probably hear that you that you have an end-stage disease.  That’s Dr. talk for, “You are dying.”  Getting that news is a traumatic event and you may need to discuss it with someone or even get professional help.

In order for your medical team to determine if you need a transplant you will have to undergo a thorough physical and mental evaluation.  Before they do that, though, there is a critical questions that must be answered,  “Do you have the financial resources to pay for a transplant should they find that you need one?”  If you cannot answer that question affirmatively a hospital social worker might be able to help but your chances of getting a transplant will be delayed until that single question gets a positive answer.  Once answered, though, the evaluation process begins and you will embark on an unprecedented medical voyage.   Among other things they have to determine  that you are a good surgical risk.

In addition to assessing  your physical condition, the team will consider  your attitude and psychological state among other factors. Donated organs are a rare commodity, so doctors don’t want to proceed unless they are sure that a patient is physically and mentally prepared for both the procedure and for life following it.  Your transplant team will also want to ensure that you have a competent caregiver,  someone you can depend on to watch over your recovery.  This is a key element of the process, you simply must be able to show that you have a caregiver who will make a significant investment of time as you regain your strength so you can return to a “normal” life. 

And…a caution if you smoke or are addicted to either drugs or alcohol chances are you will be told you must quit or there will be no transplant.  Generally you have to show that you have abstained from the two for at least six months.   Again, organs are precious and there aren’t very many available so medical facilities want transplant candidates that can prove they will take good care of them.

When the tests are complete and show clear medical evidence that you need an organ transplant, your physician will present your case to the medical center transplant committee.  If they approve, you will be added to the national transplant list at the United Network for Organ sharing (UNOS).  Then the wait begins and that, too, is traumatic.  Some people never get an organ, others wait a long time and some, like me are luckier and have a short wait.  Mine was only thirteen days but it took twelve years after my diagnosis before I was sick enough to get on the list.

THE SURGERY

Once the transplant committee approves you for the procedure you will be placed on the national transplant list and then you wait…you wait for “THE CALL.”    When it comes  you will be asked to get to your medical center rather quickly where they likely will perform additional tests in preparation for the surgery.  Prep includes giving you something that will “relax” you.  In reality it will knock you out.

You will awaken in intensive care, surrounded by beeping, chirping monitors, IV bags hanging from chrome stands, electrodes attached to your body and perhaps a ventilator.  Awakening from the surgery can be scary, because you may not be fully aware of what happened or where you are, and because of the ventilator you will be unable to talk. Most often they remove the “vent” as soon as possible.  In my case it was gone when I awakened.

Usually the medical staff will try to get you on your feet and moving around as soon as possible but depending on the transplant and your condition hospital stays can range from a week or so to a much longer period of time.  Then there is the recovery process and having gone through it this blogger strongly advises you to do everything your physicians suggest because that’s what will keep you alive.  

As I mentioned earlier, the organs most commonly transplanted are Heart, Kidneys, Liver, Pancreas, Lungs and Intestines.  Recovery from these surgeries is sometimes difficult and for a while following surgery you will make many return trips to see your coordinator and physician.

THE RECOVERY

Critical Information You Need To know

Below I have listed the recovery process for all six of the organ transplants I listed earlier.  I chose to use a different transplant center for each organ to show that while centers may differ a little in the recovery process the bottom line is always the same and that is to ensure that the patient has a sound recovery and can then lead a healthy and satisfying life.  

Kidney Transplant Recovery

Cleveland Clinic

http://tinyurl.com/bh9jp4o  

Frequently Asked Questions

Now that I feel better, when can I return to my regular activities?

You can resume your previous activities as soon as you feel better — and you might even feel good enough to add some new activities. A daily exercise program will continue to improve your health and help you maintain a positive attitude.

You will not injure yourself or your new kidney if you follow some of these general guidelines:

  • Avoid lifting heavy objects and strenuous physical work for at least six to eight weeks following surgery. It is important that you also do not lift anything heavier than 20 pounds for two to three months, and nothing heavier than 40 pounds for four to six months from the date of your surgery.
  • Avoid driving for at least six weeks following surgery. Plan ahead so a friend or family member can help out during this time. When you are in a moving vehicle, always use your seat belt.
  • Exercise is encouraged, and we recommend beginning with stretching exercises and walking. Other excellent exercises include jogging, hiking, bicycling, tennis, golf, swimming, and aerobics. All of these can help you regain your strength and may be started gradually after your incision has healed.
  • As a general rule, rough contact sports should be avoided since they might cause injury to your transplanted kidney. If you have doubts about any activity, please ask the Transplant Team.

When will I be able to return to work?

Many kidney transplant patients are able to return to work within a few months following a successful surgery. However, various aspects of the recovery process can effect the timing of your return.

You will need to discuss returning to your job with the Transplant Team. When the time approaches, a “return to work” letter will provided. This will let your employer know when you may begin working and what limitations, if any, you have.

How soon can I take a vacation?

You may travel as soon as you are feeling better, but always let the Transplant Team know when you plan to go and provide a phone number where you can be reached. By remembering these traveling tips, your vacation will be worry free:

  • Always take all of your medicine with you and make sure you have enough medicine to last throughout your trip.
  • If you are traveling by plane, carry your medicine with you. Never check them with your luggage.
  • Make sure you have your Transplant Center’s phone number.
  • Check to see if there is a medical laboratory or transplant center nearby where you can have your blood work completed. This lab will need to report your results to your Transplant office.

Heart Transplant Recovery

Mayo Clinic

http://tinyurl.com/bf6692s

Because I got a heart transplant at the Mayo Clinic in Jacksonville Florida in 2007 it is the one with which I am most familiar.  I was in the hospital for 9 days and experienced little discomfort other than feeling weak.

What you can expect

During the procedure
Heart transplant surgery usually takes about four hours — longer if you’ve had previous heart surgeries or if there are complications during the procedure. The surgeon will open your chest and connect you to a heart-lung machine to keep oxygen-rich blood flowing throughout your body. The diseased heart is removed, and the donor heart is sewn into place. The new heart often starts beating when blood flow is restored. Sometimes an electric shock is needed to make the donor heart beat properly.

You’ll be in pain after the surgery, which will be treated with medications. You’ll also have a ventilator to help you breathe and tubes in your chest to drain fluids from around your lungs and heart.

After the procedure
After you’ve had surgery to place your donor heart, you’ll likely remain in the hospital for a week or two, and then you’ll be closely monitored at your outpatient transplant center for about three months. While at the transplant center, you’ll have regular tests on your donor heart, including blood work, echocardiograms, electrocardiograms and heart biopsies.

There are also several long-term adjustments you’ll need to make after you’ve had your heart transplant. These include:

  • Taking immunosuppressants. These medications decrease the activity of your immune system to prevent it from attacking your donated heart. Because your immune system will most likely never get used to the new organ, you’ll take some of these medications for the rest of your life.

These medications may cause noticeable side effects. With taking some post-transplant drugs, such as corticosteroids, your face may become round and full, and you may gain weight, develop acne or facial hair, or experience stomach problems. Some of the effects are more noticeable when you first start the drug regimen, but decrease in severity later on.

Because immunosuppressants make your body more vulnerable to infection, your doctor may also prescribe antibacterial, antiviral and antifungal medications. Some drugs could worsen — or raise your risk of developing — conditions such as high blood pressure, high cholesterol, cancer or diabetes. Over time as the risk of rejection is reduced, the doses and number of anti-rejection drugs can be reduced, but you will need some immunosuppressant medications indefinitely.

  • Managing medications and therapies. After a heart transplant, taking all your medications as your doctor instructs is important. It’s a good idea to set up a daily routine for taking your medications so that you won’t forget. Keep a list of all your medications with you at all times in case you need emergency medical attention, and tell all your doctors each time you’re prescribed a new medicine.
  • Cardiac rehabilitation. After your transplant, you may find it difficult to adjust to new lifestyle changes, such as diet and exercise. Cardiac rehabilitation programs can help you adjust to these changes so that you can regain your strength and improve your quality of life.
  • Emotional support. Your new medical therapies and the stress of having a heart transplant may make you feel overwhelmed. Many people who have had a heart transplant feel this way. Talk to your doctor if you’re feeling stressed or overwhelmed. Transplant centers often have support groups and other resources to help you manage your condition.

Lung transplant Recovery

Duke University Medical Center

http://tinyurl.com/ajp7n8h

Use these patient resources to understand steps you need to take after your lung transplant procedure at Duke.  Click on the links for full details.

Infections in a transplant patient can be quite serious, even life-threatening. Good hand washing, along with a few other practices will help prevent infection.

After lung transplant, your health will be constantly monitored to ensure that your lungs are healthy and not being rejected .

Learn what symptoms may signal infection and find out what steps to take to maintain your health and prevent infection.

After transplant, your body is more susceptible to infection. Learn how to avoid and manage common infections.

Rejection of your transplanted lung(s) can occur at any time following your surgery. Discover steps to take to avoid rejection or ways to manage your health if you do experience rejection of your new lungs.

Learn what to expect in regards to pulmonary preparation and rehabilitation before and after lung transplant.

Diet and nutrition are very important aspects of everyday care after a lung transplant. Find guidelines to keep you healthy after transplant.

Sexual activity doesn’t have to be avoided after lung transplant. Following a few simple guidelines will ensure that you stay healthy while enjoying sex.

When patients show signs that their new lungs are being rejected, we have a number of ways to combat that rejection including steroids, RATG, and Campath.

Pancreas Transplant Recovery

Vanderbilt University Medical Center

http://tinyurl.com/avkgyhe

You will be encouraged to get out of bed as soon as possible– usually the first or second day after surgery. This is an important way to prevent pneumonia. We will encourage you to walk around your room and down the hall at least three times a day. Walking increases your blood circulation, helps relieve gas pains, and helps maintain your muscle tone.

Each morning, we will draw blood to follow your progress and adjust your daily medicines. The most important blood tests to measure your kidney function are B.U.N. and CREATININE.

Another way to watch your new kidney’s progress is to accurately measure how much fluid you drink each day and how much urine you put out. At first the nurses will measure this for you. Eventually you will be taught to do this for yourself.

You will be weighed daily before breakfast. It is important to weigh at the same time each day on the same scales with the same clothes on. This is a habit you’ll need to continue after you’re sent home. Weight gain can be a sign of rejection of your new kidney.

Once you and your nurse feel you are able to care for yourself outside the hospital you will be sent home. If you live out of town you may want to stay at the Guest House Inn near Vanderbilt for a short period of time after discharge. During this time you will be coming back to Vanderbilt for outpatient evaluation two to three times per week.

Liver Transplant Recovery

University of California San Francisco

http://tinyurl.com/bxbfptz

After surgery, you will go directly to the intensive care unit (ICU), usually for one or two days. Immediately after surgery, a breathing tube will be inserted to help you breathe. In most cases the tube can be removed within 24 hours after surgery. Many monitoring lines also will be attached; these, too, will be removed as you become more stable. When you are ready to leave the ICU, you will be cared for on the 14th floor of the hospital if you’re an adult. Children are cared for on the sixth or seventh floor. Everyone recuperates from liver transplantation differently. Depending on your condition, you will be hospitalized for two to eight weeks following the transplant.

After the Hospital

After you are discharged from the hospital, you will be seen in the liver transplant clinic at least once a week for the first month. As you improve, you will be seen less often; eventually, you will be seen once a year.

If you are not from the San Francisco area, you probably will need to stay close by for the first month after discharge. After that, your doctor or a specialist near your home will provide follow-up care. Laboratory blood tests are obtained twice a week following transplantation. Gradually, the frequency of blood tests will be reduced.

You will be notified about any adjustments in your medications. Complications can occur with any surgery. Patients undergoing organ transplantation may face additional complications. The life-threatening disease that created the need for your transplant may affect the functioning of other body systems. Other risks, such as rejection, also may occur.

Some possible transplant complications and medication side effects include:

  • Hemorrhage — One function of the liver is to manufacture clotting factors. When a liver fails, the ability to produce clotting factors is impaired. To correct this problem, you will receive blood products before and after surgery. It is expected that your new liver will start working very quickly to help prevent any excessive bleeding, but it is possible that you may be returned to surgery to control the bleeding, particularly if it occurs within the first 48 hours after transplant.
  • Thrombosis — This is a serious complication that may require a second transplant. If a blood clot forms in a vessel leading to or from your liver, this may injure your new liver. You will receive special anticoagulation medication to prevent thrombosis.
  • Rejection — Your body’s defense system, the immune system, protects you from invading organisms. Unfortunately, it also views your new liver as foreign and will try to destroy it in an attempt to protect you. This is known as rejection. To prevent this from occurring, you will be given special immunosuppressive medication that must be taken for the rest of your life. Rejection can be diagnosed early by performing weekly liver biopsies during the first few weeks after liver transplant. Although rejection is common, with early diagnosis and treatment the situation can be controlled in more than 95 percent of cases.
  • Recurrent disease — Many liver diseases may come back after your transplant. Hepatitis C is the most common disease that can reoccur following a liver transplant. Your doctors will discuss this further with you.

Intestinal Transplant Recovery

Georgetown University Medical Center

http://tinyurl.com/a48grko

The Healing Process

After your small bowel transplantation, there are two challenges. First, you must manage the pain and recover. Second, you must learn to manage living and eating with a transplanted small bowel.

Will I be in pain?

Immediately following surgery, you will experience pain. We will do everything we can to make you as comfortable as possible. Most transplant patients have a significant reduction in pain several weeks after surgery. Some people continue to have some discomfort for a longer time.

Where will I spend my time in the hospital?

Immediately after surgery, you will be transferred to the intensive care unit. You will spend several days there as the Transplant Team monitors you very carefully.

After your stay in the intensive care unit, you will be transferred to the General Transplant Unit, where you will be instructed on how to assume responsibility for your everyday care. You will be encouraged to get out of bed at least three times a day and walk around your room and the halls. This increases your circulation and aids in healing.

What are the possible risks and complications?

You team is watching for the following possible complications:

  • Increased ostomy output
  • Fever
  • Nausea and/or vomiting
  • Blood in stools/ostomy output
  • Change in appetite

Please do not be scared or anxious about possible complications. Our team has many solutions for possible complications. All transplants carry risk and we will do everything we can to minimize those risks.

How long will it take to know if the new small bowel is working?

There may be a delay in the function of your transplanted small bowel. This may increase the length of your stay in the hospital as well as the risk of complications. There is also the possibility your transplanted small bowel will not function. You would be relisted in the highest priority category allowed.

What about the possible risk of infection?

Infection is always a concern following any major surgery. The Transplant Team will monitor you for signs and symptoms of an infection.

How long before I can leave the hospital?

You must remain in the local area (within two to three hours of Washington, DC) for four to six weeks post discharge for monitoring

While the information you just consumed is general in nature you will likely find that with a few modifications it is the process most transplant centers will follow.  If you have more specific information needs you should call your transplant coordinator, social worker or physician.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

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