My doc is starting the paperwork to get me on the list. I was hoping some of you wouldn't mind sharing with me what I can expect over the coming months/years, as well as what to expect with the transplant and results themselves. No one has ever really talked to me about it as it was unexpected for me to drop to 30% lung functions so quickly. I'd especially like to hear from you if you were in this situation (being put on the list while at 30% function). I appreciate anything you can tell me.Thank you!Piperpmcp@comcast.net
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Starting the xplant process, questions!
- Thread starter anonymous
- Start date
Piper, It is a long process getting listed and waiting. The wait depends on the center you list with, as some centers have a longer wait.So what should you expect? I doubt any two stories are alike. I had a lung tx 9/12/97 and my sister 3/3/01. We had totally different situations. I listed at 28%, my sister at 32%. I got lungs 30 months later and was at 18% and my sister got her lungs at 25% after 26 months. We are different sizes ( size matters) and different blood types ( blood type matters).During the wait it is pretty much trying to remain healthy, doing maintenance drugs to stay healthy and working out to get your bones, muscles, heart and lungs to stay healthy. And of course working out also helps you mentally through the trying times that the wait gives you. Some people have to relocate for tx, and that adds another stressor to the mix. For those who are going to relocate, often a great deal of tiime is spent on fund raising, organizng the move and getting your living arrangements set, and caretakers lined up.What can you expect for the surgery? It may last from 4 hours and on up. Most folks wake up within a few hours after surgery is finished. You most likely will be on the vent still and many tubes delivering all sorts of drugs or to provide bodily functions. The vent may come out after a few hours, a few days or longer. So many things go into deciding when to remove it. Most centers will have you up walking the next day, even with a vent. When the vent is removed, most likely you will be moved to a regular floor. Once that happens, then the work begins. Physical therapy, learning your drugs, learning routines you will need to do begin. As far as how long you stay in the hospital, depends on complications, but most people I know get out in 7-21 days.Once you are out, the work does not stop. You have to keep working out for the rest of your life.... I know many don't, but it is the best thing for your body as the meds can take a toll on you. Follwing the centers rules and what labs they want you to do is very important. They want to watch your kidney function, your blood levels etc.As to what you do with your life after tx? Whatever you like. There are some careers or activities you should avoid, but asking your center for the rules and asking them when you have a question is the best thing to do. Avoiding sick people, avoiding dusts are two of the things that are a danger to your new lungs.Lots to learn, and read and research... but you have some time. Stop by my site anytime. I have a lot of resrouces and also about 800 others who are pre or post tx below and ask questions of one another.Let me know if I can be of any help.Joanne Schumhttp://groups.msn.com/TransplantSupportLungHeartLungHeartJoanne 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/
Hi, Really avoiding sick people and certain dust would be for lifetime. It is very easy to do.The dusts are really not the household dust upon your furniture, but rather dust on plants, which might contain aspergillous. Dusts from construction areas, dust from paints, etc.The sick people is really a good idea to avoid for everyone with CF and post lung tx. You will be immune suppressed and until they can find away around that, you could be at more risk for catching infections. But there are possible ways around this... wearing a mask, washing hands, not touching nose and mouth. I know that sometimes sounds as if Lung Tx makes your life very inconvenient or one with too many restrictions. But it is not the case. I can do more now than I ever did with CF lungs.Sick kids.... there are many CFers who get a lung tx and have young kids. So they are obviously exposed to more colds than others. They seem to do fine, I am sure they take precautions and work around it.Does that help?Joanne
Joanne,I'm getting closer to transplant, I've been on the list for years and am inactive at this point. But now I'm seriously thinking about all that's involved and it's kind of freaking me out. Is there a lot of pain involved or do they medicate you for that pretty well? I'm also worried because I have a lot of pets, they are like my kids. I have a horse and of course being at the barn is dusty. I also have a parrot, which my transplant coordinator said I MUST get rid of. That's going to be sooo hard. I also have 5 cats and I know I won't be able to scoop the kitty litter (darn!). Are there any other precautions I should take with this group that you know of or do you have any advice about this? Also, how do you prepare mentally for this? How do you get to the point that your actually OK with it and ready for it? Any advice I would really appreciate. Thanks, Martha 29, CF
Thanks JoanneThat does help. I have a few other questions if you don't mind=)First of all, I'm glad the dust on furniture isn't the dust you were referring to, or I'd be in big trouble! lolWhat do you do when you're in public (malls, grocery stores, schools, etc), do you wear a mask there or only in hospitals, doctors offices, etc?Have the Dr's put you on less meds as time goes on post transplant so that your immune system gets a little stronger w/o the meds?I have contacted aspergillous recently & it's interesting to know that it could be from dusty house plants, I do have those, but I bet it's impossible to pin down where I got it. Is aspergillous contagious and can be spread from one CFer to another?Thanks alot!
aspergillus does not come from dust from household plants. it comes from rotting plants. it cant be spread between people. unless someone plans on eating a plate full of your mucus. ive just grossed myself out by saying that. ick! you dont have to get rid of your parrot! you just have to avoid handling it and being around its poo. the only way you can catch a lung disease off a bird is if you inhale or eat its poo or you get sneezed on. no need to say bye to birdy.
Hi Martha, Pain is a big worry pre tx, but the lung tx teams know that...if you are in pain, you will not exercise. And they want you out of bed as soon as possible and that most likely means the day after surgery... As I say.."No Rest for the Weary". Pain is taken care of. And if you have pain, let them know and ask for more meds. Most likely you will have a pain button to give you meds when you want, or a spinal pain delivery (forgot the name now!!!!LOL), also if I had more pain than the meds could handle, I would let my nurse know and she would bolis me with more pain meds. I also let my team know that pain was a huge fear for me, and throwing up... So I have an idea that was written in my file and that gave them some warning that they better keep on top of my pain.Not sure what center you are going to. But yes, some centers will want you to get rid of certain animals. Not every center says no to cats, but many still do. Birds!!!!! A big NO NO in the tx world. Birds, cats, reptiles, rodents are the biggest source of infections and bacteria and you don;t want to shorten your life with being exposed and catching them. How about a friend adopting your parrot? That way you can visit, with a mask on of course.Preparing for it mentally??? I am not sure we ever get to a comfortable spot, but some do claim they do. It is normal and expected to have fears right up to surgery, so don't let that discourage you. It does not indicate you should not be doing a lung tx. Just means you are normal. I think for me, when I was struggling just to eat, or just to walk to the car, with O2 on and not doing well... I had a feeling " I am ready, or let me die". Just a process that happens. But, when they rolled me into surgery, I was coughing of course and I told the techs pushing me "I don't need this.. I just have a little cough. It will go away". So you can see I was still reluctant. I think they put the mask on my face to shut me up at that point or pushed some IV meds to knock me out, as I don't remember what their response was to my statement!!! LOLBelow I am going to put some hints for pre and post tx. I have them at my site.... .I hope this site will accept it.. If not, I will post them separate, or you will have to go to my site to read it...Here it goes... please feel free to ask any questions.From Joanne Pre Transplant Hint: When I got the word that I was listed for lungs, and knowing that I would have to relocate 700 miles, I started making plans immediately. I began to make lists of items I would need and then in the next year hopefully acquire them. As I got the items, I did not use them, rather pack them into boxes prepared for the move and then label the box clearly. I also began researching for apartments to live. As I was not yet with a computer, I set to Chamber of Commerces and requested books on apartments, utilities, banks, grocery stores, and also phone books for the area. I contacted the AAA and got maps for the area so that when I found an apartment complex, I could locate it easily on my map and see if it was within my range. When I went to my transplant center for clinic appointments, I took my list and we would tour the apartments to see what the possibilities were. Glad I did this as some sounded nice from the information packets they sent me, but when I toured them, they were not exactly what I wanted. My criteria may of been diffferent than others, but I wanted only professionals or graduate students. A pool, and nice grounds was important, along with a walking area for post tx walks. I also wanted an easy commute to my center and preferably in the opposite direction that most employees of the hospital were coming from. --------------------------------------------------------------------------------From Phil Pre Transplant Hint: My wife and I decided that when my transplant call came that we would purchase a new mattress, get the rugs cleaned and new linens were bought. The mattress was old and in need of replacement, so it was the perfect timing. As my energy level was rather low at this pre tx time, we would go to one mattress store a week and try out the options for comfort. Our oldest daughter put the call in when my lung arrived. I have been sleeping great ever since. --------------------------------------------------------------------------------From Tracy Pre Transplant Hint: As I have one young child and 2 grandchildren, I have begun to train them in good hygiene. I try to make it fun, and relate it to their own daily lives so that they will also stay healthy by using simple routines of washing hands and covering mouths. --------------------------------------------------------------------------------From Kurt Pre Transplant Hint: For myself, staying busy was the key to good mental health pre transplant. I worked as much as I could, without hurting my health. This provided that much needed social involvement, and feeling of accomplishment. It also allowed me not to think about the upcoming transplant, which would get my nerves on edge. --------------------------------------------------------------------------------From Pat Pre Transplant Hint: I joined a support group at the local hospital. It is a Better Breathers group. Some of the members are pre transplant and it was a good way to feel a bonding with them. --------------------------------------------------------------------------------From Steve Pre Transplant Hint: At the request of my wife, we began to look into good sources of good face masks for post tx health. We also wanted to be able to buy Purell in large quantities. We still have not found an easier way to do that, other than ordering online. --------------------------------------------------------------------------------From Carrie Pre Transplant Hint: As I need some funding for the relocation costs, my family and friends and a local library group I belong to have formed a "Lung Fund" for myself. They are finding various ways to raise money. We are also excited about getting the word out about organ donation. --------------------------------------------------------------------------------From Walter Pre Transplant Hint: Stay busy and keep a positive attitude. --------------------------------------------------------------------------------From Joyce Pre Transplant Hint: Be sure to stay connected to the world outside. Enroll in classes at your local schools for continuing education classes. --------------------------------------------------------------------------------From Linda Pre Transplant Hint: Add structure to your day and set daily targets. Each day I write one note to someone ( thank you, how are you). Each day I try to learn something new either on nutrition, medical knowledge, medication information, resources of possible areas that I will need post transplant. My goal is that everyday I read at least one page of the book I am reading. It is sometimes hard to concentrate, but this is something I try to do every day. My day always has a 15 minute period where I spend my time in spiritual thinking, either meditation, religious reading or prayers. --------------------------------------------------------------------------------From Greg Pre Transplant Hint: My feeling is to find someone, a relative or a friend who is willing to spend as much time as possible with you. --------------------------------------------------------------------------------From LauraPre Transplant Hint: I am asked often what to pack for "the call". Well from my experience and others I have talked to... don't bring a suitcase. You will come out of surgery and be in ICU. You are provided for here in everyway. Also, you will not be "conscious" enough to know who is coming and going in your room...so your stuff may not be safe. My suggestion is to put some stuff together in a bag for a family member to bring when you go to a regular room. --------------------------------------------------------------------------------From: JoannePost Transplant Hints: My hints are for when you first get home from the hospital. My family cleaned the apartment. They tossed all my bedpillows out. I had a new mattress, since the old was time to be replaced (mattresses are about 15 years of life). New linens were bought to replace the old worn out ones. A "hand cleaning center" was established at the door. On this center was "Purell", masks, Alcohol wipes, spray bottle with Alcohol ( this was used to spray the bottom of all shoes that entered the apartment) being suppressed and being at the hospital so often, we wanted to kill any bacteria, cepacia or what have you that may of been picked up. There was a sign on the center that everyone must stop and clean their hands. Also a sign was up indicating that if you had a cold, please do not enter. There were masks, for those who felt the need or extra cautious. Just a few of the things we did right after tx. More to come. --------------------------------------------------------------------------------From Donna Post Transplant Hint: When I go to doctors, dentists etc offices. they always want a list of my post transplant drugs. Way to many for me to recall. So I put them in a document on my computer and have printed out several copies and hand them out to those who request. This makes it easy to update to. --------------------------------------------------------------------------------From Pat Post Transplant Hint: As a new recipient and rather nervous with my new life that lies ahead of me, I felt the need to make my nerves less frazzled in case I need to go to my center on an emergency. I have packed a suitcase just for this purpose. Nothing leaves it and it is ready to go on a moments notice. Thank goodness I have not yet needed it, but I feel relaxed knowing it is there ready to go. --------------------------------------------------------------------------------From Tammy Post Transplant Hint: I organize my pills in film containers. --------------------------------------------------------------------------------From Steve Post Transplant Hint: I keep a list of phone numbers for my Transplant Center, Coordinator, and my general practice doctors right by each phone. --------------------------------------------------------------------------------From Dave Post Transplant Hint: My pills are organized in a tackle box. I think my center must have stock in tackle boxes as they suggested this system to all of the post tx people. --------------------------------------------------------------------------------From Elaine Post Transplant Hint: At our back door I have "Out & About" items in a carry bag. It includes 1. Mask 2. Hand Cleaner 3. Meds 4.Phone numbers for doctors 5. and my money!!! --------------------------------------------------------------------------------From Joanne Post Transplant Hint: I never use public pens, especially those in doctors offices and pharmacy. --------------------------------------------------------------------------------From Susan Post Transplant Hint: When my family and I go to the zoo, I avoid the indoor bird display. Only outdoor areas I will observe. --------------------------------------------------------------------------------From Pam Post Transplant Hint: My day to day medical issues, actions taken and if solved I keep in a notebook so that I can look back if the issue arises again. --------------------------------------------------------------------------------From Sara Post Transplant Hint: Buckle Up for Safety!!! --------------------------------------------------------------------------------From Susan Post Transplant Hint: I carry extra masks in all our vehicles for dusty situations. I also roll windows up, turn the ventilation to "recycle" and shut off the intake air while in the offending area. --------------------------------------------------------------------------------From Johns Hopkins Medical InstitutionsPost Transplant Hint: Nature sights and sounds during bronchoscopy. Distracting patients during and after bronchoscopy with a colorful mural of a meadow and the gurgle of a babbling brook significantly enhances efforts to reduce pain. The doctors emphasized that the sound and sight distraction is not a substiute for pain medication, but one of several complementary medicine approaches being explored. Patients looked at cloth murals by their bedside and listened to nature sounds through headphones and a tape player. ( for examples: http://www.bedscapes.com). --------------------------------------------------------------------------------From AmandaPost Transplant Hint: I know cepacia is found in water that is why it is so easy for CF's to get through nebulizers..... I poor bleach down our drains quite often to try and kill off anything ... bathroom sink ..... tub ... toilet... kitchen sink you get the idea.... I also try to bleach off the railings for the stairs and all light switches, door knobs and the PHONE is a huge one and the keyboard for the computer. --------------------------------------------------------------------------------From JoannePost Transplant Hint: I finally found my list of hints for the in patient. 1) Clipboard to hold paper while I wrote on it. 2) Wipe board - an alternative to a clipboard and paper 3) Big black marker and big sheets of paper to write on. (the new meds may make you shakey and also not able to write the way you ordinarily do. 4) You may want to borrow some large clothes. I needed socks and sneakers that were much larger than I wore, but due to surgery, the water and air I was puffed up with, I needed much larger clothes. I was about 107 pre tx, and came out of surgery at 160. 5) Ask for a fan, you may be hot. Not sure why hot is a common thing after tx, but for me it was. 6) Those rolls of tape laying all over the place that nurses leave around - keep it to hang your cards on the walls! --------------------------------------------------------------------------------CHECK THESE OUT - from "LUNGS FOR LIFE"Transplant Awareness Bracelet -$18.00CF Awareness Bracelet -$18.00Joanne's Bracelet -$14.00These 3 bracelets are just a few of the items that Lungs for Life has at their store. To read about these 3 bracelets, to order any of these items, please go to the following web site.http://www.lungsforlife.org/other_ways/lfl_store.htmJoanne 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/
im telling you now, doctors overreact when it comes to animals. if you dont have a bloody intimate relationship with you bird its no problem. get someone else to clean the cage, let someone else handle it. when it comes to cats get someone else to clean out the litter, get someone to slip its nails so you dont get scratched. poo is the culprit, not the animal itself. if anyone told me to get rid of my pets id beat the **** out of them, they are my life and if anyone suggested that they are disposable well gee. would you get rid of a partner if he/she had the flu when you get a transplant? 'sorry honey, you keep catching colds, i will have to give you to my nextdoor neighbour' pets are not cars, you dont trade them in or sell them when you need something better.
AbsintheSorrow
New member
Okay.. I never really paid attention to tx stuff before. And, well, this thread freaked me out. Forever after do you have to beware of anyone with a cold? Or just for some period of time after? Because in case anyone was unaware, it is impossible to work and have any kind of a life and avoid every cold or flu out there. All the cleaning crap that has be taken care of sounds like a real pain in the ass. What if my husband at the time (hoping I have one) gets a cold, do I have to kick him out until he's over it? I mean, I get a cold a few times a year, as does everyone else. I mean I know having new lungs must make such a HUGE difference, but all of the pain and recovery and after-care make it sound like it's not even worth it. Can you still live a normal life and go into public when you want? Someone who's been through it want to tell me why they think it's worth it?
AbsintheSorrow
New member
And another little question I just thought of.. this may sound ridiculous, but I wonder with this need to be extra clean going on. What about having sex? Do you have to avoid that for any period of time (other than whatever you need to heal and get strength back)? Or do you have to take new measures in being abnormally clean about it?
Hi Again, When I am in the hospital, docs office, or crowded areas, I do put on a mask. I may do it more than others, but it has paid off. I had 2 colds in 6 years. Also, I think it helps to promote organ donation, and if I can help others get organs in that way, fine!. People inevitabley ask "why the mask?" I am happy to explain. Planes are also another bad air place. I have flown 50 times since tx, and never got sick after. I owe it to masks and wiping all areas I touch in the plane with alcohol.Over time the immune suppression drugs may be lowered. They check blood levels often and as time goes on, they want your blood levels to be lower. I know only a couple of lung recipients who are not taking prednisone any longer, and maybe one or two who are off immune suppression drugs.... .I don't think that was something their docs did, they did it on their own. I would never do that.Aspergilllous is more likely on outdoor plants, but indoor can have it too. Most lung tx centers do not allow live plants in patient rooms. That is why you will see many live plants and flowers on the nurses station. That is where the flowers people send end up. Also I think for me, I could not have live plants in the house for 6 months maybe. Once I got rid of them, I really did not want them back. Whey worry and fake plants are so nice these days, so that is what I stuck with. Outdoors I wear a mask if I garden, mow the lawn, or if someone else is mowing. If I see dust flying I try to get away, or put on my mask. It is in the grass, bushes, trees, dirt and it can fly. Great questions..... JOanne
Kylie, As far as getting rid of the bird. When I mentor lung tx folks, I remind them "follow your tx centers rules, and be compliant with them, do not follow what other patients rules are, don't follow my rules, you need to stay with your center and have a good relationship with them".If your center says the bird goes, the bird goes. I don't know any center that says a bird can stay. It is not only the handling of the paper at the bottom of the cage. Birds flap wings, toss things around. This is where the real danger lies. Not sure if you know anyone who has gotten sick from owning a bird, but I do. They were healthy people with no lung illness. But birds can get healthy people sick. Birds can carry many illnesses, even indoor ones.As far as outside birds, they carry many illnesses. That is why outdoor cats may be considered a danger by some lung tx centers.Here is a scenario: Have you ever watched a birdbath? The birds come to it, poop in it, take a bath in it and then drink from it, while their friend is doing the same. They take off, somehow your cat catches the bird. But first kitty takes a drink from the bird bath. Kitty brings her lovely reward - dead bird - to you for approval and praise. Oh and kitty is so happy about pleasing you, gives you a nice lick too!!! GROSS!!!!Not sure, did you have a lung tx yet? How are you doing>?Joanne
Kylie, I don't get rid of my family when they are sick. They are intelligent enough to know to take precautions and so do I. Unfortunately pets do not know that they should not lick you, throw dust around.Again it comes back to what your tx center says. My involvement with lung tx pre and post folks is many, all around the world. I can say I know a handful of people that have done "what their tx center told them not to do" and they have paid the price. One has been discharged for further care by their center. 1 caught the pigeon poop illness and now back on O2. Some stopped taking their meds, or reducing them, now in chronic rejection. I say that it is so easy to change some of your lifestyle, make it safer, reduce risk, because LUNG Tx is not easy. Life is too valuable to let it be ruined by animals, plants, and the like. You will probably think that I hate animals and plants. I don't! I happen to love the best dog in the world- but he does not kiss me on the lips, but he gets tons of scratches, hugs, snuggling etc. I happen to adore plants and flowers. I come from a long line of nursery and florists. I garden every day that the weather allows. I am addicted to flowers and plants. But I made some changes in my lifestyle - I wear mask and gloves for gardening. Works every time.Just some of my thoughts.Joanne
Emily, Do we have to be aware of everyone with a cold? No! You don't want close contact with them. You don't want to be in a room of sick people. You don't want to be in a small enclosed area with them. I know pre tx I was thinking 'if someone has a cold, and I step outdoors, do I catch it?" Well it takes some learning and experience to know what is "too close". You are not going to catch every cold that is around. Remember, in Japan, if you are have a cold and you are out in public, (maybe in your home too) you wear a mask! That is the rule of thumb... I think the U.S. Could use that rule too.The cleaning you have to do..... it may seem big to you... especially at the age of 20. But with practice, and a system in place, I bet I can start eating at a restarurant before you. I have any "cleaning" I do done before the waitress gets to the table to give us a menu. You learn where the germs are and what to clean.Kick your husband out if he has a cold? No!!! Where is he going to go? Can you afford that? No.... just common sense is used. I wear a mask, the person who is sick, where a mask when around me. Used separate towels, we do that anyways. Keep some distance. Why get sick if you don't have to. And these hygiene rules should not just be for tx folks, but everyone. Hygiene means you stay healthy, and you don't miss work, social events, and that is what life is about, living.Does life go to crap after tx? NO... that is why we do it. LIfe is crappy when we needed the lungs. Now we are living, for the first time.I think when your lungs are still healthy and you are functioning and have a quality of life, that the cleaning, the pain, the surgery seems "why do it"... But when you deterirorate and have no life, and your are going to die and your husband and family will no longer have you in their lives, that is when your brain kicks in "I have to do this".Why is it worth it? I am here. I am breathing. I am doing. I have done so much since my lung tx 6.5 years ago. I learned to swim, I drove a motorcycle a few times, I run, bike, hike, play volleyball, participate in Transplant Olympics, soaring in a glider, run in 5K races, volunteer speaking for high schools, colleges, nursing students and nurse managers. I work , I travel. I have flown over 50 times in 6 years. But the best thing is that I am still hear, making a difference, helping others, but best of all, MY FAMILY and Loved Ones. I can now give back to them. I can finally have quality relationships that i am not thinking about me so much and how it effects me. I want to be here for them and make life the greatest.What ever is most important to you in your life... think about it being gone.. Now if you can do something to get that back.. would you do it? I did. Well worth it. I know very few people who said it was not worth it.... life is worth it, breathing is worth it.Joanne
Emily,Good for you to ask. Many post tx folks are too scared to ask... And sometimes the doctors need to take that iniative and just tell it like it is.I am not sure there is any certain "amount of time" you are not allowed to have sex. I never heard that. But from talking with friends and hearing stories, once you get new lungs - you have a new interest and energy for sex, so your partner better be ready for the NEW YOU!~! It is like walking... natural and a sudden new interst and zest for it... so your walking partner better be ready to be in the dust....Joanne