Jan
Your questions about work are complex and I will not respond on an open forum. This is a topic I feel very strongly about.
I was TX'ed when I was 49 at Duke and was nolonger certain if I would survive another course of IV's. Just prior to the TX I had additional sinus surgery (my 5-6th) to try and preclude the infections draining from my sinus from reinfecting my hoped for new lungs. I suggest you TX surgeon talks with Dr. Egan at UNC and Dr. Davis at Duke to find out how they go about getting the old lungs out with a reduced chance of infection (both centers work with cepacia, Duke no longer accepts type 3). I was not typed at the time for my cepacia, yet Columbia performed synergy studies for the combination of drugs that may help to control the cepacia. I also had pseudomonas (for over ten years). I was told my lungs were very scared into the surrounding tissue and it took hours to scrape them out of my chest. I was very out cold and do not recall this part.
I talked with both surgeons (Dr. Egan and Dr. Davis) as part of the process of listing at both UNC and Duke. Why would your center not have you meet and feel comfortable with the surgeon? My surgeon was very involved in my early treatment post TX and as time passed the pulmonologist became the "lead" doctor. I really want to see and approve the guy cutting on me! Any consideration on a center that has done more CF's such as UNC (University of North Carolina, Chapel Hill)?
I asperated Orange Juice around 5-6 days post TX and this resulted in a chemical pneumonia in my new lungs. Do not demand OJ post TX and do not hurry to take some pills because it will likely kill you. I was in the hospital for a month in ICU on a vent and trached. I was on around 6 plus liters of oxygen. My daily walk took 2 nurses and hour to get my ass out of bed with the lines and machines. I than spent another 5 weeks in the hospital mostly on a vent at night and trached. I was out for one day (on two to three liters of oxygen) and went septic and back for another week. Out for 3 weeks and back for some fun and games in the hospital (cardiac effusion). This is not typical. Some cepacias do not reinfect the new lungs. I have heard may numbers for the percent that loose cepacia post TX and will defer to those docs. at UNC and Duke. My donars lungs came in with an interesting exposure to fungus that resulted in my having a very unique fungal infection post TX and with the pneumonia.
Therapy? Do you mean PT (Physical Therapy?). I went to Duke's manditory program for 24-25 sessions at their gym. The sessions lasted from around 11 to 3 or 4 in the afternoon. The program consited of 1 hour of floor exercises, 20 min. on the track walking, 20 minutes on an exercise bike, 20 minutes on a shoulder and arm machine, and ten stations of weights, plus once a week a BS waste of time lecture. I stayed at this program for 5-6 months post TX. Duke will demand this program prior to the TX to build you up to get through the TX. I try and exercise 5-6 days a week even 4.5 years out. I exercise at home and do not go near a commercial gym due to infection concerns. I feel very stongly about exercise both as a CF and TX. Had I not exercised and lead a very active life I never would have made it to 49 with the first set.
Tired of oxygen, I understand that. I downhill skied with an oxygen bottle and went rowing my raft down a class 3 streach of whitewater on oxygen. Both were not bright. All my walks and some walks on XC ski's were with oxygen in a pack on my back prior to my TX. I was on oxygen after getting out of the hospital for only a few weeks (very rare) and have a bottle and a concentrator in the garage yet have not used any oxygen for over 4 years. At around 9,000 feet in the mountains, if I walk up a hill I will still desat. and drop to around 89%. I live at 3,200 feet and have another place at 4,200 and walk at those altitudes yet on steep uphills I sometimes stop to "catch my breath" (around 90% sats.). I can XC ski at both altitudes and at 7,500 feet I can downhill ski without too many issues breathing. Commercial flights (8,000 foot cabin alt.) is not an issue.
If you two are interested in talking to me, send me a way to get you my phone number. I have talked to several pre TX that have many questions. Prior to my TX I cold called a few TX's that told their stories in the CF Roundtable publication.
Best of luck. I would send you my e-mail address yet this contains my name, something done by my wife while I was in getting my TX. My TX was in April of 2000.
Cf 54 TX cepacia
Your questions about work are complex and I will not respond on an open forum. This is a topic I feel very strongly about.
I was TX'ed when I was 49 at Duke and was nolonger certain if I would survive another course of IV's. Just prior to the TX I had additional sinus surgery (my 5-6th) to try and preclude the infections draining from my sinus from reinfecting my hoped for new lungs. I suggest you TX surgeon talks with Dr. Egan at UNC and Dr. Davis at Duke to find out how they go about getting the old lungs out with a reduced chance of infection (both centers work with cepacia, Duke no longer accepts type 3). I was not typed at the time for my cepacia, yet Columbia performed synergy studies for the combination of drugs that may help to control the cepacia. I also had pseudomonas (for over ten years). I was told my lungs were very scared into the surrounding tissue and it took hours to scrape them out of my chest. I was very out cold and do not recall this part.
I talked with both surgeons (Dr. Egan and Dr. Davis) as part of the process of listing at both UNC and Duke. Why would your center not have you meet and feel comfortable with the surgeon? My surgeon was very involved in my early treatment post TX and as time passed the pulmonologist became the "lead" doctor. I really want to see and approve the guy cutting on me! Any consideration on a center that has done more CF's such as UNC (University of North Carolina, Chapel Hill)?
I asperated Orange Juice around 5-6 days post TX and this resulted in a chemical pneumonia in my new lungs. Do not demand OJ post TX and do not hurry to take some pills because it will likely kill you. I was in the hospital for a month in ICU on a vent and trached. I was on around 6 plus liters of oxygen. My daily walk took 2 nurses and hour to get my ass out of bed with the lines and machines. I than spent another 5 weeks in the hospital mostly on a vent at night and trached. I was out for one day (on two to three liters of oxygen) and went septic and back for another week. Out for 3 weeks and back for some fun and games in the hospital (cardiac effusion). This is not typical. Some cepacias do not reinfect the new lungs. I have heard may numbers for the percent that loose cepacia post TX and will defer to those docs. at UNC and Duke. My donars lungs came in with an interesting exposure to fungus that resulted in my having a very unique fungal infection post TX and with the pneumonia.
Therapy? Do you mean PT (Physical Therapy?). I went to Duke's manditory program for 24-25 sessions at their gym. The sessions lasted from around 11 to 3 or 4 in the afternoon. The program consited of 1 hour of floor exercises, 20 min. on the track walking, 20 minutes on an exercise bike, 20 minutes on a shoulder and arm machine, and ten stations of weights, plus once a week a BS waste of time lecture. I stayed at this program for 5-6 months post TX. Duke will demand this program prior to the TX to build you up to get through the TX. I try and exercise 5-6 days a week even 4.5 years out. I exercise at home and do not go near a commercial gym due to infection concerns. I feel very stongly about exercise both as a CF and TX. Had I not exercised and lead a very active life I never would have made it to 49 with the first set.
Tired of oxygen, I understand that. I downhill skied with an oxygen bottle and went rowing my raft down a class 3 streach of whitewater on oxygen. Both were not bright. All my walks and some walks on XC ski's were with oxygen in a pack on my back prior to my TX. I was on oxygen after getting out of the hospital for only a few weeks (very rare) and have a bottle and a concentrator in the garage yet have not used any oxygen for over 4 years. At around 9,000 feet in the mountains, if I walk up a hill I will still desat. and drop to around 89%. I live at 3,200 feet and have another place at 4,200 and walk at those altitudes yet on steep uphills I sometimes stop to "catch my breath" (around 90% sats.). I can XC ski at both altitudes and at 7,500 feet I can downhill ski without too many issues breathing. Commercial flights (8,000 foot cabin alt.) is not an issue.
If you two are interested in talking to me, send me a way to get you my phone number. I have talked to several pre TX that have many questions. Prior to my TX I cold called a few TX's that told their stories in the CF Roundtable publication.
Best of luck. I would send you my e-mail address yet this contains my name, something done by my wife while I was in getting my TX. My TX was in April of 2000.
Cf 54 TX cepacia