There comes a moment when your doctors are going to address the final solution to any pulmonary fibrosis: a lung transplant. That moment can come early because they may want to test you while you are still in very good shape and then defer a decision on the transplant because you’re too healthy. That way you undergo the procedure without too many hiccups. It can also be that you are close to needing a lung transplant to survive. In that case the workup will be accelerated.
The first transplant was performed in 1963 and life expectancy has gone up over the years because of improved experience and new medication to prevent rejection. Many transplant patients consider their life after the transplant as being reborn. No more oxygen and although there’s the constant medical care and medication, life with (a) new lung(s) is considered a blessing and is regarded as being as close as possible to a normal life.
Not everybody is a suitable candidate for a transplant. Each transplant center is free to set its own criteria for transplant candidates, but certain requirements are generally accepted:
You will be encouraged, and sometimes it is a requirement, to participate in an outpatient pulmonary rehabilitation program or a home exercise program prescribed by your transplant team. You should begin this program as soon as you are notified that you are a candidate for lung transplantation. If you are relatively fit, your recovery from surgery will be easier.
When you’re told that you’re a potential candidate and are being considered for placement on the transplant list, it’s only the beginning. You will undergo an extensive series of medical tests in order to evaluate your overall health, and, in the end, if you are suitable for lung transplant surgery. (Text in blue will bring you to Wikipedia for great information on the topic)
Types of lung transplants
Lungs almost always come from a donor whose life came to a sudden end and has been pronounced brain-dead. Hospitals keep those patients alive and with the patients or family’s consent more organs are used to help different patients. Understand that fragile lungs are more frequently not suitable for transplant because of the smoking habits of the donor, inflammation or damage that happened after being submitted to the hospital.
In most lung transplants patients receive a single healthy lung. Together with the remaining most healthy lung it increases the quality of life.
If both lungs are failing and one lung would not be sufficient a patient may require both lungs to be replaced.
Some patients may also have severe cardiac disease which in of itself would necessitate a heart transplant. Very rare with IPF patients.
Allocation of Lungs
The lung allocation system determines the order in which lung offers are made to candidates awaiting transplantation based on estimates of each candidate’s medical urgency prior to transplant and his or her probability of success following a transplant. This method is based on a “net benefit” concept and will give priority for lung offers to the candidates who are most urgently in need of a transplant and who are expected to receive the greatest benefit.
The lung allocation system uses clinical information from individual lung transplant candidates to help determine the order in which lung offers are made. Full text UNOS:
Once you are placed on the UNOS waiting list, you will be introduced to all stages of the process and your doctors and transplant coordinators will be available to answer questions. The waiting time is a difficult part of your transplant experience because you feel your body and understand the need , yet you have to wait for that “perfect” donor not knowing the day or time the phone might ring.
Staying Close to the Hospital
Most hospitals don’t require that you relocate when you become a candidate, but you must be able to reach your hospital within several hours of receiving notice that your new organ is available. If you live far away or can expect heavy delays because of traffic, it may be wise to consider alternative solutions. It also means that you can’t go on trips farther away without notifying your transplant team.
Staying in Touch
Once you have been registered with UNOS, it is vital that you stay in touch with your transplant coordination team. Your transplant coordinators must be notified of any changes in your address and emergency numbers, including cell phones. You must contact your transplant coordinators also if you have any serious illnesses or hospitalizations.
When an organ becomes available, a transplant coordinator will contact you immediately and tell you that you need to come in. It is important that you be prepared to travel to the hospital on very short notice. (Who is taking you to the hospital?) Make these arrangements well in advance.
Preparing for Your Operation
Exercise and try to maintain your pulmonary rehabilitation schedule. Stay active and try to improve your flexibility and endurance because that will shorten recuperation time following your surgery. If you or your family needs it, find counseling in this stressful and emotional time. Hospitals & insurance companies can help you with that.
Paying for Your Operation
A lung transplant is very expensive and the care and medication after your operation is considerable. Next to your insurance, there are organizations who can help you with these costs. Please consult with your hospital.
RESOURCES FOR TRANSPLANT CANDIDATES AND RECIPIENTS
United Network for Organ Sharing (UNOS) - www.unos.org
Lung Transplant Foundation www.lungtransplantfoundation.org
The Scientific Registry of Transplant Recipients (SRTR) - http://www.srtr.org/
Second Wind Lung Transplant Association, Inc. - www.2ndwind.org
Transplant Buddies - www.transplantbuddies.com
Coalition for Pulmonary Fibrosis - www.coalitionforpf.org
American Lung Association - www2.lungusa.org
Transplant Speakers International, Inc. - www.transplant-speakers.org
Childrens Organ Transplant Association, Inc. - www.cota.org
National Foundation for Transplants - www.transplants.org
National Transplant Assistance Fund - www.transplantfund.org
New Lungs - www.newlungs.com/links.html
International Society for Heart and Lung Transplantation
Medicare Rights Center - www.medicarerights.org
Pulmonary Critical Care Associates - www.pcca.net/lungtransplantation.html
Donate Life - www.donatelife.net
Cleveland Clinic Lung Transplant Info Page -
"I'm not looking forward to the transplant surgery - I'm looking forward to be living again"
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