Welcome to Duke Lung Transplant Friends
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Diane Detmer
Website designed, published and maintained by Diane Detmer
Contact Webmaster: dinki@charter.net
Diane Detmer
Website designed, published and maintained by Diane Detmer
Contact Webmaster: dinki@charter.net
Duke Lung Transplant Patient Guide Review
An Informal Discussion for Patients and Caregivers
Doing Your Part
An Informal Discussion for Patients and Caregivers
Doing Your Part
There are many diseases that lead patients to the point of needing a lung transplant. Some of these diseases may be the result of bad habits that eventually destroy the lungs. The main reason people seek a lung transplant is because they want to live and without a lung transplant living much longer is not possible. Committing to a lung transplant means the bad habits that may have led to the lung disease must be stopped. As explained in the Duke Lung Transplant Patient Guide, patients must be substance free for six months. Duke maintains a ZERO tolerance policy for tobacco use.
Going through a lung transplant is a huge undertaking and requires complete dedication to the process from the patient and their family. Making the decision to pursue a lung transplant says a great deal about your desire and determination not to be beaten by a disease. It shows that you have the capacity to make this kind of life long commitment. Holding onto harmful habits that may have caused the lungs to be destroyed can be a clear indication that the patient is not fully committed to doing what is necessary to survive a lung transplant. Starting those bad habits up again after a lung transplant endangers the new lungs and will likely lead to certain death.
There are many more people in need of and waiting for lung transplants than there are lungs available each year. The lungs should not be wasted. Being accepted into a lung transplant program and receiving a lung transplant is an opportunity to breathe again - to live again. This is an opportunity many people never have. For a more clear explanation regarding this matter, read the Duke Lung Transplant Patient Guide.
Patients need to take many medications after receiving a lung transplant. Most of these medications are very expensive. A thorough evaluation of your financial situation and insurance coverage will help determine just how much money these medications could cost you each month. Medicare now covers some medications if the patient is already receiving Medicare benefits at the time of transplant. The lung transplant financial coordinator can explain this better and help evaluate your insurance coverage. Along with the financial commitment regarding medications is the commitment to manage and monitor your medications post-transplant. Some patients are used to taking many medications; others may find managing many medications a daunting and even frightening task. During the first year following lung transplant, especially the first few months, medications and/or doses can change almost weekly, sometimes daily. It takes commitment to keep an accurate record of any changes in medications and or doses of medications. Yes, the transplant team keeps a record, but it will be to your benefit to also keep a record at home.
Filling your pillbox correctly also takes great commitment. Making sure your medications are placed in the right slot for the given time of day is so important. Because of the amount of medications you will take post transplant it is common that some medications will interact with one another if they are taken together. Understanding those conflicts will help prevent problems with drug interactions. Other medications need to be taken together to be most effective. The transplant pharmacist will help clear up any confusion regarding medications and will provide the level of understanding and training you will need to be able to manage your medications. Another important aspect in dealing with your medications is making sure you get your refills in time without running out. During the first few months post transplant you will still be living in Durham and this will provide time for you to adjust to managing your medications also. Medication management will also involve your caregiver’s assistance until you are able to fulfill this commitment on your own.
As the Duke Lung Transplant Patient Guide states, after your lung transplant you will be expected to monitor your weight, blood pressure, temperature and lung volumes daily. This is a very important commitment in regard to protecting your transplanted lungs. Sudden changes in any of these values can indicate a serious problem. A trend up or down in these values can also indicate a serious problem. If you don’t keep consistent records you can’t follow a trend. The Patient Guide includes blank forms you can copy and record these important values.
Another important commitment in lung transplant is exercise. Pre-transplant and post transplant patients are expected to participate and complete the Duke Pulmonary Rehabilitation program. Pre-transplant these important exercises help prepare your body to go through the lung transplant, building strength and stamina you may no longer have due to advancing lung disease and associated limitations. In some circumstances it may be impossible to exercise regularly or at all, but consulting with the transplant team and pulmonary rehab team will provide the best possible exercise plan for you. Sometimes patients and/or families may not be able to see the progress or benefits of pulmonary rehab beyond seeing their loved ones suffering. It is imperative to your success in your transplant to persevere through rehab pre and post transplant as advised by your transplant team.
A healthy diet post transplant is an essential part of recovery and maintaining good health post transtplant. For some patients, this can be a difficult adjustment during the first year following transplant. Going through a lung transplant can really upset a persons desire to eat or even think about food. Adjusting to new medications, new daily routines, going to Rehab and clinic apoointments take up a great deal of patients time each week. Maintaining a healthy diet can sometimes loose its position of priority. Some patients may need the help of a feeding tube for a time to help maintain weight good nutritional status. At first the very thought of a feeding tube can be frightening but those patients who have had them have been grateful for the assistance and not having to deal with food issues along with everything else can be a relief. Over time as things settle down and recovery progresses dietary issues become easier to deal with.
It is important to remember that there will often be two steps forward and one step back, but over time everything does level out and each week brings improvement. The need for IV antibiotics will gradually lessen, the need for tube feeding will lessen too and your appetite will eventually improve. Just hang in there.
Finally, you will be expected to return to Duke for check ups after your transplant.
Refer again to the previous article about record keeping. These records should be brought with you to each clinic visit for the transplant doctor and coordinator to review and evaluate. It is important to contact the transplant team of any changes in your condition. This would include but is not limited to: fevers, changes downward in your lung volumes, significant increases or decreases in your blood pressure, the inability to control blood sugars, problems with eating, acid reflux. There is much more to add here but the transplant team will advise you more speifically to meet your situation.
Going through a lung transplant is a huge undertaking and requires complete dedication to the process from the patient and their family. Making the decision to pursue a lung transplant says a great deal about your desire and determination not to be beaten by a disease. It shows that you have the capacity to make this kind of life long commitment. Holding onto harmful habits that may have caused the lungs to be destroyed can be a clear indication that the patient is not fully committed to doing what is necessary to survive a lung transplant. Starting those bad habits up again after a lung transplant endangers the new lungs and will likely lead to certain death.
There are many more people in need of and waiting for lung transplants than there are lungs available each year. The lungs should not be wasted. Being accepted into a lung transplant program and receiving a lung transplant is an opportunity to breathe again - to live again. This is an opportunity many people never have. For a more clear explanation regarding this matter, read the Duke Lung Transplant Patient Guide.
Patients need to take many medications after receiving a lung transplant. Most of these medications are very expensive. A thorough evaluation of your financial situation and insurance coverage will help determine just how much money these medications could cost you each month. Medicare now covers some medications if the patient is already receiving Medicare benefits at the time of transplant. The lung transplant financial coordinator can explain this better and help evaluate your insurance coverage. Along with the financial commitment regarding medications is the commitment to manage and monitor your medications post-transplant. Some patients are used to taking many medications; others may find managing many medications a daunting and even frightening task. During the first year following lung transplant, especially the first few months, medications and/or doses can change almost weekly, sometimes daily. It takes commitment to keep an accurate record of any changes in medications and or doses of medications. Yes, the transplant team keeps a record, but it will be to your benefit to also keep a record at home.
Filling your pillbox correctly also takes great commitment. Making sure your medications are placed in the right slot for the given time of day is so important. Because of the amount of medications you will take post transplant it is common that some medications will interact with one another if they are taken together. Understanding those conflicts will help prevent problems with drug interactions. Other medications need to be taken together to be most effective. The transplant pharmacist will help clear up any confusion regarding medications and will provide the level of understanding and training you will need to be able to manage your medications. Another important aspect in dealing with your medications is making sure you get your refills in time without running out. During the first few months post transplant you will still be living in Durham and this will provide time for you to adjust to managing your medications also. Medication management will also involve your caregiver’s assistance until you are able to fulfill this commitment on your own.
As the Duke Lung Transplant Patient Guide states, after your lung transplant you will be expected to monitor your weight, blood pressure, temperature and lung volumes daily. This is a very important commitment in regard to protecting your transplanted lungs. Sudden changes in any of these values can indicate a serious problem. A trend up or down in these values can also indicate a serious problem. If you don’t keep consistent records you can’t follow a trend. The Patient Guide includes blank forms you can copy and record these important values.
Another important commitment in lung transplant is exercise. Pre-transplant and post transplant patients are expected to participate and complete the Duke Pulmonary Rehabilitation program. Pre-transplant these important exercises help prepare your body to go through the lung transplant, building strength and stamina you may no longer have due to advancing lung disease and associated limitations. In some circumstances it may be impossible to exercise regularly or at all, but consulting with the transplant team and pulmonary rehab team will provide the best possible exercise plan for you. Sometimes patients and/or families may not be able to see the progress or benefits of pulmonary rehab beyond seeing their loved ones suffering. It is imperative to your success in your transplant to persevere through rehab pre and post transplant as advised by your transplant team.
A healthy diet post transplant is an essential part of recovery and maintaining good health post transtplant. For some patients, this can be a difficult adjustment during the first year following transplant. Going through a lung transplant can really upset a persons desire to eat or even think about food. Adjusting to new medications, new daily routines, going to Rehab and clinic apoointments take up a great deal of patients time each week. Maintaining a healthy diet can sometimes loose its position of priority. Some patients may need the help of a feeding tube for a time to help maintain weight good nutritional status. At first the very thought of a feeding tube can be frightening but those patients who have had them have been grateful for the assistance and not having to deal with food issues along with everything else can be a relief. Over time as things settle down and recovery progresses dietary issues become easier to deal with.
It is important to remember that there will often be two steps forward and one step back, but over time everything does level out and each week brings improvement. The need for IV antibiotics will gradually lessen, the need for tube feeding will lessen too and your appetite will eventually improve. Just hang in there.
Finally, you will be expected to return to Duke for check ups after your transplant.
Refer again to the previous article about record keeping. These records should be brought with you to each clinic visit for the transplant doctor and coordinator to review and evaluate. It is important to contact the transplant team of any changes in your condition. This would include but is not limited to: fevers, changes downward in your lung volumes, significant increases or decreases in your blood pressure, the inability to control blood sugars, problems with eating, acid reflux. There is much more to add here but the transplant team will advise you more speifically to meet your situation.