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Starting the xplant process, questions!
- Thread starter anonymous
- Start date
Hi Emily,I read your post and I did understand it but I thought it was unfortunate that you thought about it that way. I guess we can agree to disagree.From what I have read on this thread I guess I can understand why you have come to think of it that way. It is not as bad as it seems. The initial period after transplant may be scary but you will definitely feel much better - if you get that sick of course.Also, don't be put off by statistics. You have to remember that they have only been doing double lungs for a bit over 10 years so the statistics are not that reliable. Realise that the life expectancy is 1) conservative AND 2) not an average. When they say that 65% of people will be alive after 5 years you will probably find that actual figures are alot higher than that.Andrew.
Transplant is a personal decision. My involvement with those with CF and other lung illnesses, and involvement with those who are pre and post lung transplant has been a very enlightening experience.When a CF person emails me, or calls me and has doubts about going for the lung tx, I immediately tell them a few things.1. It is not for everyone2. It is not an easy process3. Most people post lung tx say they would do it again in a minute4. The drugs and therapies for post tx care are improving, slowly, but improving5. The statistics for survival are improving, slowly, but improving.6. It is normal to doubt that lung tx is for you.7. Being scared, fearful, angry, depressed are common and expected feelings you will have. Get professional help to for talk therapy or medication to help with these. 8. And last but not least, I tell them that I respect either decision. If they choose to go for tx, I respect that. If they choose to go for NO transplant, I respect that. Deciding to go for tx is difficult. But so is the decision to not go for it, I respect that.Most times when people are in doubt about tx, and not sure if they should list, I tell them "get listed, you can always get off the list". The reason is that the wait is long, going on the list puts you in a safe spot. I cannot tell you how many of my friends decided to "wait, put off, not sure" if lung tx was for them. When they became even sicker and struggling, they realized they wanted to live. So they got on the list at that time. They were told the chances of surviving to tx were slim. I sadly have seen many CF friends die when they took this route. In fact many of them knew they were not going to make the wait, and said " I should of listed a couple years ago, even though I thought it was not for me." Sad words to hear.Lung tx allows people to do many things. As far as living in a bubble???? Well as my surgeon will tell you, he gave us lungs to LIVE, not live in a bubble. So there is no living in any bubbles. Because we are careful about animals and plants and infections, does not mean we live in a bubble. We want to LIVE a LONG time and are willing to make some stipulations in our life to LIVE. I think many times it takes a great degree of experiencing bad health and making changes in ones life ( cutting back hours of work, being more careful around crowds and children etc) to realize it can be done. As far as children, and why they are a concern to post tx. They do not have the maturity to understand how hygiene works. They also have immature immune systems and they can catch come viruses that can be difficult to treat post tx. RSV, CMV, EBV are the 3 most popular. Although EBV is more college age -better known as Mono.Well I need to burst my BUBBLE and get outside and garden and help rebuild the garage - WITH MASK ON and GLOVES!!!! Small price to pay for doing what I want, but I am doing it!Joanne Schumluckylungsforjo@aol.com
Reading all of this scared the crap out of me when first reading about not keeping birds, cats, dogs reptiles etc. I have 2 indoor cats ( 14 years now) 3 outdoor cats ( strays i have raised from kittens ), and 9 iguanas. I dont always agree with Kylies way of putting things, but i do agree on one point. Because of cf i have chosen not to have kids. These animals are my kids to me, so asking me to give them up would be like asking a woman to get rid of her children. This may sound ridiculous to some, but lets face it, when you cant have a child, you will find other ways to fulfill maternal instincts . Animals are the best way to accomplish this. They need love and they give love, just like a child, so i agree with kylie on this one, i would NOT part with my pet(s), Id be lost without them. When i got b.cepacia 7 years ago i was worried about keeping the lizards and asked my doctor about it and he said as long as i am careful, and always keep my hands clean after handling them, it shouldnt be any problem. I always use gloves when cleaning the lizard cages, and wash my hands after handling them ,or the cat litter. Its a rule in my house that, when someone handles the lizards they must wash their hands afterwards. ~Diane 39 / cf / diabetes / b.cepacia
alot of people dont understand the joy pets bring, and that they are like children to some. ive had the ole 'they arent humans, they are just pets' said to me alot. my mum even refuses to have the title grandma, 'wah wah its a dog not my grandaughter get over it'. these poor people havent experienced the bond between man and animal. its been proven pets are good for our health anyway! lowers blood pressure, reduces stress, makes you go for walks. you can even train your dog or cat to do things you cant. dogs are good for protection too, alot of us are weaklings who cant fight off a large man, but my dog can! transplant teams should be doing what dianes doc did, giving advice on how to live safetly with pets.now, how did you end up with 9 iguanas diane!
Joanne,Thanks so much for all your advice and information. I am listed in Pittsburgh and have already accumulated 2 years on the list. Hopefully I will still have 1-2 more years before it actually happens, but even that seems much too soon! On good days I say "I'm fine, I'm doing great!" On bad days I feel like I need one NOW! I don't see how I could keep my bird and not be exposed to it's poop. I know that sounds gross but birds are messy! When it dries, it becomes dust and when you clean the cage it becomes airborn. Hopefully I will be able to spend a few more years with him and then find someone to take him who will let me visit. This tx stuff is so scary. Thanks for answering so many questions, it's good to hear that there are people out there that have gone through it and are doing so well!Martha 29, CF
I also wanted to add that I too have chosen not to have children (a very hard decision) and my pets are my children. I have, of course, my bird, a horse, 2 dogs and 5 indoor cats. I used to work in a veterinary hospital as a veterinary technician, so pretty much animals were my life. Since going on O2 I cannot work in such a physical environment, I could not keep up anymore. This was one of the hardest changes in my life that I had to make. However, like others have said, I want to LIVE! And if living involves transplant and giving up some of what makes me happy I will do so. That's not to say I have to give up all my animals. Of course I'll keep my dogs and I'll always have cats, just maybe not so many. My horse is my passion, I love to ride, it calms me and makes me happy so I will not give that up. If I have to wear a mask to the barn and to ride, so be it. But as much as I love my bird, I don't see how I can keep him and get a transplant. I agree that if you don't comply with your tx centers' guidlines and do whatever you want, why should you get lungs over someone who would do everything they were asked to? My husband brought that up at one time when I was fighting wearing my O2. I didn't want to wear it in public, I was embarrassed, didn't want to be stared at. He said if I wasn't going to take care of myself, why should I get lungs when someone else is waiting doing everything right? That really made me think and I wear my O2 everywhere now. That's my two cents.Martha 29, CF
Hi, Yes, doctors do recommend you wear a mask when outside. I am not sure what you mean by "outside" but I am assuming outdoors in the open environment?They will tell you to wear a mask if there is dust, grass, tree clippings flying around. That is where the aspergillous is. Or go indoors during those times. But sometimes that is not possible. When driving in a car with windows down and you pass a construction site. Or after tx, when you are taking one of your great walks, for miles and enjoying the outdoors and the fact you are alive, and you are walking your dog who just wants to kiss you, and you come upon someone mowing their lawn.... what should you do? Put on the mask for a minute till you past the offending stuff that is being thrown into the air.Wearing a mask is not that horrible really. I know pre tx, I could not stand the thought, because the lack of O2. But remember you have new lungs. It is much easier. Others I know are worried about "how do I look?" Well you look like someone who either has an illness that you do not want to spread, or you look like someone who is protecting yourself. If anyone asks, tell them. It is a great opportunity to talk about organ donation and transplantation. I rather enjoy wearing my mask when I am in a crowded area, on a plane, at the pharmacy, at the docs office, because inevitabley, someone is going to ask. I think of this as an opportunity to help others who are waiting organs to get the word spread and upping their chances of getting organs sooner. Also, wearing a mask is sort of fun. The funny comments "did you just rob a bank?" "Mom why she have a mask on?" "Does she have a mouth?" are actually great ways of meeting people. And to single men and women, here is a story. I was at a smoke free bar on St. Patricks Day ( actually all restaurants and bars and public places in New York state are now smoke free). The place was packed wall to wall. I was with a friend that had a lung tx a couple months before me. She is single, I am not. She had no mask on, I did. You know why she was not wearing a mask, concerned no guy would talk to her, approach her with a mask. She went to the bar to get our drinks, I just hung out. While she was gone for about 5 minutes, I had about 4 guys, or groups of guys come up and talk to me. About 4 of them were still hanging out and talking to me. The owner of the bar came over as well, and we discussed the CF "Run Like Hell" 5K race that the bar hosts and which I participate in. My friend came back, some of the guys moved on. I told her how many guys had come up to me, and I think the mask is a GUY MAGNET. She did not go for it, but I continued to be talking to people asking nicely why I had that mask. It is a conversation starter. I will share when I was leaving the bar, there were a couple of guys near the door, and I heard one say to the other "what the hell is she doing? what is her story?" Sort of laughing at me at the same time. Well, I am a very brave person since tx and not afraid to approach anyone. I stepped over, got into their personal space, which is much closer than I would ordinarily get to some stranger and said " have you ever heard of the flesh eating disease?" Their eyes widened, they took a step back ( which they could not do, since they were against a wall) and said with trembling voices " Yeah" I stepped closer and said " I HAVE IT!" And walked away. My sister reprimanded me when I told her. She said I should of first pulled the mask down and coughed on them, then told them the good news of what illness I had!!!!NEXT TIME!!!Hope that answers some questions about the mask.JOanne
I wanted to share this recent article about CF and Lung Tx. Cystic Fibrosis Patients Live Longer with Lung TransplantsJane Salodof MacNeil Medscape Medical News 2004. © 2004 Medscape May 25, 2004 (Orlando) — Despite the generally high risk of early death after a lung transplant, cystic fibrosis patients lived almost 4.5 years longer on average after receiving new lungs at a major transplant center.Roger D. Yusen, MD, MPH, from Washington University School of Medicine in St. Louis, and colleagues found that cystic fibrosis patients at Barnes-Jewish Hospital, an affiliated medical center, had an average survival of 5.7 years after transplantation. They concluded that the survival benefit clearly outweighed the high mortality rate immediately after surgery for these patients."We have patients who live 15 years with very good quality of life, but some die one day after transplantation," Dr. Yusen said at a press briefing here after presenting data from a 14-year, 247-patient study at the American Thoracic Society 100th international conference. One of the challenges, he said, is that clinicians can tell which patients are likely to die without a transplant, but not who is at greater risk or most likely to benefit from the surgery. "It's difficult to predict how people will do after transplantation. Most predictors are things that happen after transplantation," Dr. Yusen said.The equity point at which the survival benefit became apparent was 15 months after transplantation, according to the study, which had 858 person-years of follow-up. The crossover point at which the risk of death from continuing to wait for a transplant was greater than the risk of death after the operation was 64 days.Average life expectancy is 33 years for patients with cystic fibrosis, which is not cured by the surgery. The young, predominantly white population at Barnes-Jewish was 47% female and had an average age of 28.1 years.Patients spent a median of 1.48 years on the waiting list for new lungs, which are given to only about 1,000 lung disease patients per year in the U.S. Nearly a third of the study population, 79 patients, died within two years on the waiting list. Forty-seven patients were still on the list at the end of the study, which reviewed patients who were waitlisted from 1988 to 2002.Nearly half the population, 121 patients, received new lungs. Of these, 76% lived two years. Survival after transplantation was reported to range from 84% at one year to 45% at seven years. A total of 65 transplanted patients were still alive at the end of the study.Jonathan Orens, MD, medical director of lung transplantation at Johns Hopkins School of Medicine in Baltimore, said the study confirms previous findings that lung transplantation can improve survival and quality of life for many cystic fibrosis patients. The key issue is that the operation be "appropriately timed," he said, so that the new lungs are given when patients' posttransplant survival is likely to be longer than the time they can live on a waiting list.Dr. Yusen noted that the United Network for Organ Sharing is currently considering a proposal to change the criteria for distributing lungs from time spent on the waiting list to a formula that gives weight to medical urgency.ATS 100th International Conference: Abstract B22, Poster 111. Presented May 24, 2004.Reviewed by Gary D. Vogin, MDJoanne SchumJoanne M. SchumCystic FibrosisBi-lateral Lung Transplant RecipientSeptember 12, 1997University of North Carolina Hospitals Chapel HillResidence: Upstate New Yorkemail: luckylungsforjo@aol.comManager of: Transplant Support - Lung, Heart/Lung, Hearthttp://groups.msn.com/TransplantSupportLungHeartLungHeart"Taking Flight - Inspirational Stories of Lung Transplantation" Compiled by Joanne SchumAuthored by lung recipients around the worldhttp://www.trafford.com/robots/02-0497.htmlhttp://www.trafford.com/
AbsintheSorrow
New member
I still hate the idea of the mask. I'm not afraid of how I'm going to look, I just hate those damn things... but reading your last post on masks made it sound a little better. One of my favorite things to do with <b>rude</b> people who ask is freak them out! I am always happy to answer questions to nice people, or people who are actually interested that ask. Rude people I love to cough on them, or near them, and freak them out. At least the mask part sounds a little more worth it, if I can have fun scaring the hell out of people. <img src="i/expressions/rose.gif" border="0">
<blockquote>Quote<hr><i>Originally posted by: <b>kybert</b></i>alot of people dont understand the joy pets bring, and that they are like children to some. ive had the ole 'they arent humans, they are just pets' said to me alot. my mum even refuses to have the title grandma, 'wah wah its a dog not my grandaughter get over it'. these poor people havent experienced the bond between man and animal. its been proven pets are good for our health anyway! lowers blood pressure, reduces stress, makes you go for walks. you can even train your dog or cat to do things you cant. dogs are good for protection too, alot of us are weaklings who cant fight off a large man, but my dog can! transplant teams should be doing what dianes doc did, giving advice on how to live safetly with pets.now, how did you end up with 9 iguanas diane!<hr></blockquote> I got my first iguana from my ex husband 10 years ago( i wanted one for a long time) then i bought another one who was for sale for over 2 years. Noone wanted her, because she has a deformed jaw. The others were unwanted pets, that friends gave me from someone they knew who either couldnt keep them or, just didnt want them anymore. I guess having cf has made me want to help anyone i can, even unwanted iguanas. I had 2 that had kyphoscoliosis, one with no toes on her foot, one with cancer, one now who has rickets( bone disorder), two monitors with kidney disease.... Some of my iguanas are imperfect with health problems, just like me, and there is no way i would give them away. Noone gave me away just because i wasnt perfect.Diane 39 / cf / diabetes / b.cepacia
oh thats so sweet! its so sad when people give animals up because there is something slightly wrong with them. im glad they are with you. my dog had/has a few problems. im sure if she was owned by someone else she would have been put down by now. weve spent hundreds of dollars trying to solve her physical and behavioural problems. its all worth it though, shes a sweetie.