• Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204615866

    To CF 54 Tx Cepacia

    Please email me at my husband’s email standinginthegap4greg@hotmail.com (set up to match his web page for tx info & fundraising standinginthegap4greg.org) and I will give you our personal email. Thank you so much for responding.

    I know what you mean about lugging your oxygen tank trying to do things. Greg runs his line down through his shirt and into a back pack (picking out perfect back packs is a regular shopping trip.) Many people comment on what a good idea that is and that they are going to tell their loved one (who feels self-conscious about getting out and about with oxygen). His tank is the top fill stroller, and his pack weighs ten pounds. We try to still do everything, but it takes a lot longer and a lot more effort.

    We also have developed a radar that hears a person coughing within about 70′. Our son is even trained to avoid coughers, and has asked at school to be moved. Most of our family and friends know to stay away from him when they are sick. My husband has left stores and restaurants and barbershops because people are coughing. We know that don’t understand that a little cold can be life threatening to my husband, and yes, are amazed by people’s cluelessness or ignorance when they or their children are out and about with things more serious than a cold, not to mention just spewing their germs all over. The only time he masks up is when he has to go into hospitals, or dr. offices. He just wears the regular masks though, which are not as effective as those stupid-looking duck bill ones.

    Take care and love to hear from all the txers who are doing great! We look forward to the day when that is our story.

    Jan

    Profile photo of hepcathepcat
    Member
    #171204615834

    Hi,

    Post lung tx life is great….. I mean Super!!! But, I will be fair, it can be a roller coaster, there are peaks and valleys, and sometimes the first year can be rough.

    Catching stuff post tx… well I know pre tx I thought I would catch stuff a mile from the person who was infected. With some trial and error and testing you will learn what you are safe with. The first few months post tx, you are more immune suppressed, so extra precautions might be taken ( masking up , avoiding some crowds) but then after your immune suppression is lowered, you can choose to not wear the mask as much. I am 7 years post tx, and I have had 3 colds in those 7 years.. and they were nothing.. 3 days of a bit of nose runnning.

    As far as flying, I have flown over 50 times since tx…. and I love it. I mask up, I don’t eat on the plane, I drink my own water, and I wash all surfaces I touch.

    Working post tx. Again this is a personal choice, trial and error. Many people go to work, others choose not to. I have worked part time, and volunteered since tx. I am a bit more immune suppressed than others and I value my health so much, i do not want to put myself at risk of getting sick. But there are other CFers who have returne to careers, full time and very busy with their career. Am I for that? If your health does not suffer, and if you are able to work out to some degree event though you work, it is okay, in my opinion.

    I did a survey a couple years ago of people who were post lung…. I asked who returned to work and how was their health. What it boiled down to was that CFers are the most likely to return to work. But those who did return, 60% were not able to exercise as much as though who were not employed, and 40% of those were sick more often.

    Since my tx I have done Many, Many things.. .Adventurous – like driving a motorcycle, attending the transplant games in which I played volleyball and ran the 1/4 mile. I also have flown like I said over 50 times, I have gone up in a glider and went soaring, I speak on a volunteer basis to promote organ donation, I wrote a book on Lung Transplant, I was the caregiver for my sister when she had her lung transplant, I serve on 6 board of directors for various CF and Transplant groups, and I love life and keep looking for more challenges.

    That is just a bit about post tx life according to ME!! LOL

    Joanne Schum

    Joanne M. Schum

    Cystic Fibrosis
    Bi-lateral Lung Transplant Recipient
    September 12, 1997
    University of North Carolina Hospitals Chapel Hill
    Residence: Upstate New York
    email: luckylungsforjo@aol.com
    Manager of: Transplant Support – Lung, Heart/Lung, Heart
    http://groups.msn.com/TransplantSupportLungHeartLungHeart

    “Taking Flight – Inspirational Stories of Lung Transplantation”
    Compiled by Joanne Schum
    Authored by lung recipients around the world
    http://www.trafford.com/robots/02-0497.html
    http://www.trafford.com/

    Lungs for Life Foundation
    http://www.lungsforlife.org
    Joanne’s Bracelet, Transplant Awareness Bracelet, CF Awareness Bracelet
    http://www.lungsforlife.org/other_ways/lfl_store.htm

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204615826

    Kelly,
    I am 27 years old with CF and 7 months ago I had a double lung transplant. I have read some of your emails and I had felt the same way. Speaking from experience, TX is a blessing from God. My email address is codie2@hotmail.com if you have any question I would be glad to answer them. Some of the responses to your inquiry make me laugh. People have NO IDEA what it is like and and what point you have to reach to even qualify for a transplant. You can give me all the numbers you want, the fact is I am glad to be alive, thankful to the donor family, and I plan to live every day to the fullest!!

    Profile photo of mandhelmandhel
    Member
    #171204615812

    Thanks for the information.

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204615810

    To stay away from infection takes common sense and some work. Currently, I have the second cold in the past four years and it is an issue and kicking me around. I do not go to concerts or out to dinner on Friday night. When I go out to eat, I choose times when few are out and about. I will go into Costco or Walmart and just pay attention and move when someone coughs. I wear a mask on flights, and move quickly from people coughing in major hubs and any crowd. For the monthly hospital test, I sit away from the sick and rude (not covering your mouth when you cough) as would most CF’s.

    My energy levels are reasonable, yet not what they were when I was in my 20’s and 30’s. This may well be age related. I feel I am more active than most my age.

    Life post TX? A new and exciting world of adventure’s and trials unlike your prior world. Waking up alive and not attached to an oxygen bottle coughing my lungs out, priceless.

    I was very lucky, waited around one year and two months when I became serious, due to short term staying alive concerns. I am not the typical small CF that need to have lungs cut down from the larger donars.

    Cf 54 Tx

    Profile photo of mandhelmandhel
    Member
    #171204615800

    I think it is amazing that your life is so good! How is it to stay away from infection. I mean are you able to go into crowds still? And are your energy levels good? I find it hard to imagine what life would be like after tx. Also how long did you have to wait?
    Thanks

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204615793

    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

    Profile photo of mandhelmandhel
    Member
    #171204615784

    Can someone write what the new rules are here. I saw them somewhere else but cant remember what they are or where they were. Im talkin about the transplant rules as of April 1st.

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204615766

    Debbie:

    Yes you can fly commercial post TX. I fly accross the country to my TX center for my clinic visits from the west. I likely caught a cold from one flight and was not pleased (first year post TX). I take many precautions as do other TX’s. Some have flown to Europe. I have flow to Oz. post TX which is a very long (14 hour) flight, without any issues.

    CF 54 TX cepacia

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204615764

    Are you not allowed to fly AT ALL after tx?

    Debbie
    23w/ CF

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204615763

    Jan:

    I will respond to all your questions if I can get in touch with you via e-mail. Some of the information you request I would rather not put out on an open forum. How may TX’s does your center perform in a year and do they have success or have they tried to TX cepacia?

    CF 54 TX cepacia

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204615761

    Five years is an average survival rate. That includes people who only make it a few days to people who make it many more years after. I’m post transplant almost 8 years and doing fine. I’m followed at Duke University Medical Center in Durham, NC and they have several patients beyond 10 years.

    Even if it were only five years, by the time you are ready for transplant you may not have more than one year left, so five seems like a lot. My CF doctor put it this way: you are trading one set of problems for another set of problems, but you feel much better. I’ve talked with lots of transplant patients and not one of them has ever expressed regret for getting transplanted.

    When the time comes for anyone to be transplanted, I strongly suggest you get the names and phone numbers of other CF transplants from your doctor. They can be a big help with answering questions and letting you know what to expect.

    If anyone wants to email me, my name is Lori and my email is: justintime4.1@juno.com

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204615713

    This post is for the man who is 54 post tx and had b. cepacia. I’ve read your posts over the last few months and have been working up the nerve to ask you a few questions. My husband is 45, has b. cepacia Type III and is listed in Indianapolis for lung tx. I don’t have to list our concerns and issues, because you know them first hand more than anyone. Do you work full time now? How long were you ‘down’ after your tx (I know it varies from patient to patient, just curious with you.) How many times did you have therapy each week, and for how long? I’ve read Joann talk about some special procedure Dr. Egan uses to clean out the chest cavity, or something. Are you aware if they did that to you? Although we don’t talk to the surgeons, our tx team said the weren’t aware of that, but they’d ask the surgeon. They have done one CF’er with b. cepacia (he’s about 20 I think), and he’s doing okay. My husband has b. cepacia, pseudonomas and stenotrophomonas (sorry for the spelling). He has been having to do two home IV antibiotics for three weeks about every two months. He still works full time (he’s such a go getter, and until a couple of years ago (when he got cepacia) he was so active — so he doesn’t work the many hours he used to.) He gets so frustrated with being tied down to oxygen (4 liters) and not having the energy and breath to do things.

    Our tx team has told us (though they don’t know, of course) that they expect him to shoot close to the top of the list April 1st when the new rules go into effect. It’s surreal for us — wanting him to feel better, but being scared of the surgery and post surgery.

    Thanks for listening. I am so glad you are doing so well. Best wishes to you. We have each other and a very strong faith — I don’t know how we’d make it without that. I just wanted to let you know how much your story encouages me.

    Jan

    Profile photo of hepcathepcat
    Member
    #171204615537

    Yes, a pilot…SHE flys small planes I believe. She had her living lobar lung tx in 1996 at UNC… .she actually has her story in Taking Flight….

    Having connections with so many people around the U.S. and the world….. I tend to encounter information I thought not possible.

    Joanne

    #171204615532

    Thanks to everybody who responed to my conerns. It made me feel better about what people posted. Thanks,Kelli

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