I am pre transplant and have been told I need to work out pre transplant, and post-transplant as well. Why?

With impending transplant, many times the last thing you feel like you’re able to accomplish, is starting an exercise program. Many patients with CF stay as active as possible their entire life as they realize it is what is best for their health. But when your lungs are so damaged and needing to be replaced – you often do not feel you have the physical stamina to do a work out program.

Hopefully your transplant center will stress the importance of exercise pre transplant. Often you will hear from the medical professionals that they want your heart, lungs, bones and muscles in the best shape possible so you can make it to transplant and making recovery quicker and easier.

The medicines post transplant are also hard on your heart, bones and muscles, so following a strict regular work out post transplant is something you will want to strive for. Regular bone density tests are a must.

One of the rewarding parts of getting new lungs is the energy, drive and ability to work out post transplant – a surprise to many recipients. If you so desire – being part of The Transplant Games – which are held in the United States and other countries – is rewarding. You don’t have to be an award winning athlete to participate, it is to show the public, transplantation works – and the reward of accomplishing it, is icing on the cake.

I was just listed for a lung transplant and my family and friends have a million questions. Also they are talking about holding a benefit for me to raise money. I am a quiet person and not sure how I feel about it.

Yes you have concerns, fears and worries that most people thinking about lung transplantation have and so will friends and family. Have a small gathering, meeting for lunch or dinner to share your hopes for the future. Share with them information about lung transplantation and why this is the best choice for you. Share your fears with them – they will be a source of comfort and support for you. You may want to have some fun and create a pin, or necklace or a jeweled bracelet to wear during your wait. Have a friend or two help. Just remember that lung transplantation for CF has a proven track record of success and, on average, individuals with CF live much longer after transplantation and have a better quality of life.

If you are in need of some financial help with transplant expenses (like most transplant recipients to be), your friends might like to organize a benefit in your honor. Remember that even if you have health insurance, there are many expenses (like traveling to and/or relocating at the transplant center are often not covered by insurance policies) Most times friends make the offer to hold a benefit – and the best thing is for you to say YES! This is how they can help, and truly they do want to help. They feel helpless, and in offering their kindness and services they are able to achieve a goal. At any gathering, provide organ donation materials as well. You can get the facts from web sites http://www.organdonor.gov/ or from an Organ Procurement Organization http://www.aopo.org/aopo/ This time can be scary, but with family, friends, church members, and co-workers, support can be found around every corner.

I have heard from friends, people at my transplant center and read in various locations about the post lung transplant life. Do you know what I might expect?

Joanne’s brother Karl, herself, her CF doctor Robert Schwartz, father George, and brother-in law Ed Allocco pictured planting a tree in memory of Mary Lou' Allocco, Joanne’s sister. Mary Lou passed away from ovarian cancer in 2005. She also had CF.

Each person reacts differently post transplant. Each transplant center follows its own set of protocols so the outcome of patients varies depending on where you have your transplant. Side effects from post transplant medicines vary patient to patient and side effects can affect some and not others. High blood pressure can occur and most times can be attributed to the immune suppression medicines. Food restrictions also vary. Some centers may limit fresh vegetables and fruits and black pepper in the first few weeks after getting new lungs. Other centers have different rules. Most centers may suggest no raw fish, seafood and grapefruit juice. Salt intake should be at a minimum as high salt can cause additional health issues. Ask your own center and follow their suggestions.

Yes, you can gain weight after transplant. What a dream come true for many with CF. But there may come a day where you find you need to watch your diet as weight increases too much. Weight gain can be attributed to prednisone. Regular exercise will also help control your weight (and good for your other organs.) I think most CF patients are initially thrilled with the weight gain, but when they need to lose some weight, they are shocked at the difficulty in doing so. Who would have guessed it would be hard?

Post transplant diabetes most times is caused by the steroid dosages and insulin may be a lifetime medicine for some. Some CF lung recipients are able to be removed from it when the dose of prednisone is tapered. The other source of the cause of diabetes is the anti-rejection medicine. Some of the medicines are tough on the kidneys. That is the reason for frequent blood level checks. Kidney failure may occur after a lung transplant and a kidney transplant may be needed (but this is uncommon). I can only share with you the experience of others who had to have a kidney transplant and they said it was much easier than the lung transplant.

Controlling your diabetes is easy, if you are trained and follow the recommendations. Oral drugs, insulin, or an insulin pump are to help control the diabetes. Diabetes care has come a long way. Now you are able to eat sugars and starches, and you just need to medicate for the foods that cause glucose to rise. Exercise will also help control your glucose levels.

Depression can also be part of post transplant life. But then again depression is prevalent among the population at large. The reasons for depression could be the medicines, the new future suddenly before you. Fortunately depression has been getting more acceptance over the years and society is more receptive to those who have it. Situational depression is common and will subside with time. Clinical depression is chemical and brain related and the guidance of a medical professional is strongly advised. Anti-depressants may be prescribed and from my personal experience this is the way to go. After all you have new lungs; you should enjoy your new life.

You should also know that careful medical studies clearly show that your overall quality of life improves after transplant probably because being really sick with CF is associated with a poor quality of life and the new lungs allow your activites of all types to increase immeasurably. Thus if you need treatment for depression it may be for just the short term.

I just had a lung transplant and was told that next week I will be having my first bronchoscopy which is required. I never had one. Can you tell me a bit about them? My biggest concern is being awake for it!

Some CF patients have had a bronchoscopy pre transplant, most have not. This is a stressful and anxiety topic for those that have no experience. Most of the fear comes from myths you hear or from friends who may have had an experience that was not favorable. The first step is to tell the transplant team bronchoscopy team of your concerns. If you care not to be “awake” during the bronchoscopy, suggest to the team you would prefer to be knocked out. Many of the medicines available to the bronchoscopy team are pain killers and amnesia medicines and you will not remember the event afterward. Other patients like to be aware of what is going on and like to watch the bronchoscopy on a TV to see what the airways look like. I prefer to be under and my team is happy to oblige. Afterall, if you can make it thorough a huge lung transplant operation, the bronchoscopy will not be a big issue.

I am anticipating my upcoming lung transplant. The possibilities seem so endless. Will I have a new feeling about myself? What about love?

Those with CF face many issues, pursuits, goals and roadblocks in their life. How they tackle these varies by the person and life experiences. Some are able to attend college, start a career, have a family, while others are not able to do this pre transplant.

Self esteem is difficult for any teenager and as you get older the effects of low self esteem may stay with you. Often the lack of body fat and coughing episodes can make someone not feel confident, or feel that they are not equal to their peers. With a lung transplant there is a sudden change in your physical health and appearance whereby you feel that you can be more vocal, stand up before others and you have much to contribute to the community and you are finally an equal voice.

For many with CF life has not allowed one to be as independent as they wished. Some go to college, or go out on their own, and then illness strikes and they need the care from support people. Others like me lived at home with family due to illness hitting often and common sense telling me I could not be totally independent.

Transplant has a less time consuming daily regimen and less sickness for the most part that would require the help of others. It is a chance to further a degree, apply for a challenging job, finding an apartment or house of your own. The world is at your fingertips.

Romance – a lovely feeling to enjoy. What better time than when you are healthy, able to be active, attend cultural events. This post transplant time is a perfect time to pursue your new interests and meet someone who shares your interests. Relationships are time consuming and require devotion and communication - this is your time to shine!!