My son is 22 years old and is getting sick every time he comes off IV meds the dr.s are telling us to get prepared to start the evaluation process. Iam watching my son get sicker and thinner aLl the time And as soon as he comes off the ivs his gets sick again to watch him get disappointed is hard to handle. So I am trying to prepare my self as what this process is going to be like. Can any one tell me about the process and the Drs. have told us in the past that success rate isn't very good but when look on here I read many success stories. I don't know what to think any info would be very helpful
Starting the evaluation for transplant
- Thread starter robbiekay
- Start date
Hi Robbiekay, I am 26 years old, I have both cystic fibrosis and cystic fibrosis related diabetes and I received a successful lung transplant when I was 24 years old. I like you son began the evaluation process when I was 22. I'm not going to lie, the process takes a bit of time depending on how sick your son is. If he is getting very sick much much more quickly chances are they will speed up the evaluation process. Most of the time the transplant team wants to get a person on the transplant list as soon as possible because we just don't know how long you will be on the waiting list for. It may be a day it may be a year. I was on the list for a month before I got my first false alarm (a call that doesn't actually work out) In the end I didn't actually receive a call. I was so sick that I got placed in the ICU on life support and waited in the hospital until the new lungs came, it was very very close for me. The evaluation process itself involves doing lots of medical tests like lots of blood work, CT scans, a test to see how much stomach acid is in your stomach and a few other minor tests. Once the doctors and the social workers get all of the test results and talk to you and your family personally they "transplant panel" which are the doctors, surgeons and social workers get together and decide 1) if you qualify to get onto the list and 2) what your sons Lung Allocation Score is. This score determines where he will be on the transplant list. Once you are on the list it is pretty much a waiting game. Like I said before it could be a week, it could be a month, it could be a year. In terms of what you and your son should do through this process I would recommend a few things 1) get as informed as humanly possible about every aspect there is about lung transplant, about cystic fibrosis, about the lung transplant process. I found the more informed I was going through the process the more relevant questions I could ask to better help yourselves and your entire family through the transplant and recovery process. 2) Be 100% completely honest with your transplant team. Leave no stone unturned when it comes to how you, your family and your son feel physically, mentally, emotionally and psychologically about the transplant and getting the transplant. 3) ask as many questions as you can, there is no such thing as a stupid question when it comes to the transplant process 4) continue to talk to other people who have had transplants and who have gone through the transplant process. Obviously everyone's transplant story is different but they are also similar in many ways. Other transplant recipients and parents can give you tips and tricks on how to get through the entire transplant thing. 5, and I feel is MOST important) although he has not gone through the transplant yet he needs to start preparing for it now... especially psychologically and mentally. It is a tough tough tough thing to go through, probably one of the hardest things your son and your entire family will go through and the more mentally prepared you are the better the outcome will be. And that doesn't just mean your son, that means the entire family and whoever will be involved in the transplant. Its not just the person who goes through this process, its the entire family. I know you are probably scared right now and overwhelmed with new information, I completely understand, I know myself and my family were when we first started this process but try not to be. The best thing you can do is take it one day at a time, one step at a time. I think that is the best way to be successful. Like I said before I'm not going to lie to you, it is the hardest thing I have ever gone through. I literally went to hell and back fighting for my life but at the same time I learned what true human kindness and compassion was (my nurses, doctors and surgeons) I appreciate life so so so much now I can't even put it in words, and it has made me an overall better person. I've had complications, I've had struggles, I've had the highest of highs and the lowest of lows but I wouldn't change a thing because I am alive. Since my transplant I have fallen in love, graduated college, traveled, and spent countless precious hours with my friends and family. All of the pain and struggle were totally worth it. If you would like to talk to me more about the entire transplant process and ask me some questions please do not hesitate to private message me. I can even give you my cell number and we can talk over the phone. That goes the same with your son as well. I remember what it was like starting the process at his age and it was scary as hell. He, you and your family will need as much support as possible, don't ever be afraid to ask for it. There are so many people in this community who support your son and your family and we want nothing but the best for you. Sending you nothing but love, best wishes, and healthy thoughts. I hope you have a great week and please tell your son for me he has a fellow CF fighter in California who has his back always!!
Thank you so much for responding with honesty and advise. I will follow it, the dr's haven't given the word yet they have just told us any time now it is coming and to get comfortable with the idea, ya right. they did say if we wanted to start talking to the transplant team, they would set it up all we have to do is ask. I wish they would have just started the process I think the sooner the better. But mike isn't ready to accept where he is at this yet in the progression of cf especially after the negative things they told him before about transplant when he did not need it yet. How sick did you become before you accepted the idea of transplant? I am so happy to hear that you fell in love graduated college and got to travel congratulations god bless you. You deserve it
Those are all things mike has always wanted but cf and getting sick missing classes and having to reschedule always seemed to get in the way. I really think if the dr's hadn't told him about the narrow success rate he would be more ok with this. Now I just wait but how long. When I see him getting sick each time he comes off the Iv's, this cannot be good or normal I am worried one day soon the IV meds are going to stop working.
we are in Ca also San Diego
I would like to contact you but I am not internet savvy but my email address is robbiekay@me.com
thanks you are so kind.
Robbie
Those are all things mike has always wanted but cf and getting sick missing classes and having to reschedule always seemed to get in the way. I really think if the dr's hadn't told him about the narrow success rate he would be more ok with this. Now I just wait but how long. When I see him getting sick each time he comes off the Iv's, this cannot be good or normal I am worried one day soon the IV meds are going to stop working.
we are in Ca also San Diego
I would like to contact you but I am not internet savvy but my email address is robbiekay@me.comthanks you are so kind.
Robbie
TreasureGoddess
Member
baco623, what a wonderful reply. Thank you so much. I'm thankfully not at that point with my son, but it's always in my mind when I see yet another medicine no longer works for him. It can be an overwhelming concept to begin to think about. I especially loved the part that you got to travel, fall in love, graduate college.....that makes me teary with joy. Thank you.
Excellent post baco623.
Robbie, it might be worth mentioning, have you guys exhausted all of the antibiotics options available.
Cos, if you can find some odd or unusual antibiotic that are not usually used, you might have an easier time over the next couple of years.
Instead of fortum (ceftazidime), have you tried cefepime or Cefpirome (cefrom) or Cefoperazone (cefobid).
Or maybe drop tobramycin as the second antibiotic and try aztreonam instead?
Robbie, it might be worth mentioning, have you guys exhausted all of the antibiotics options available.
Cos, if you can find some odd or unusual antibiotic that are not usually used, you might have an easier time over the next couple of years.
Instead of fortum (ceftazidime), have you tried cefepime or Cefpirome (cefrom) or Cefoperazone (cefobid).
Or maybe drop tobramycin as the second antibiotic and try aztreonam instead?
breatheforher
New member
My daughter (age 20) was told in December that it was time to get listed. Her PFTs dropped from 40% to 22% within 3 months and they have stayed 22% - 28% since December. We went thru the evaluation and the team met then had meeting with us. Daughter was told she was approved to be listed and she told them she wasnt ready. It is killing me because I see her getting sicker and sicker everyday. She says she will do it when its the last resort (which doctor told her it is) but once you get a transplant it cant be undone and you have the transplant problems for rest of your life. She is holding out for the new med that is supposed to be out next year.....but I dont know how much longer she can wait. She has been in hospital every 3 months for past 2 years and now every other month since December. I know its ultimately her decision and I understand her feelings.....but its so hard dealing with this. I cant begin to imagine what she is feeling.
Breatheforher, - I completely understand how your daughter feels. I was so incredibly overwhelmed by the thought of having to get a transplant. I honestly didn't want to do it at first. Its funny cause that is how quickly my PFT's dropped at her age. I have read through the research I have done that is considered some what normal for people in their 20's doctors aren't totally sure why. Like you mentioned it is her decisions and she has to work through it herself. For me the way I made the decision to get it done is I was already in so so so much pain physically and mentally that I figured things could not get any worse. I was practically bed ridden, I was coughing up blood every day, I was in and out of the hospital every two months on IV's and I just didn't to live that way any more. I was so so tired. Yes it is true the transplant can not be undone but for me it became a very simple question, do you want to live or do you want to die? And at the time of my transplant there was no choice, I would have died very very very quickly. It is also true that after the transplant you do have to deal with the "transplant lifestyle" but form everyone I have talked to who has gotten the transplant and has CF its not a whole lot different then living a CF lifestyle. Your still taking pills, your still going to the doctors, you have some restrictions but the major difference at least for me is I could breath, I wasn't coughing, I wasn't in pain, I gained about 30 pounds post transplant, I could function, I could get back to my life. Has your daughter ever talked to a therapist about all she is dealing with. I found that was extremely helpful for me, I was able to talk through everything I was feeling and all my concerns without fear of judgement. Like I said before I completely understand how she feels, it is completely normal I think for her to feel this way. I would actually be worried if she didn't feel afraid. If you want, send me or her e-mail and we can talk more. I can even send you my phone number so we can talk in person. It has been my experience that the more support you have through this CF/transplant process the better she and your family will be over all. Sending you and your daughter and your family lots and lots of love and the best positive vibes, xoxo
Hello, I'm 24 (25 in June) and have cf. I'm going through the evaluation for a double lung and liver transplant now. The other people on here have given some great advice. It's been a very time consuming and stressful process, you hear the statistics and see other people not make it through and its extremely scary. Everything I've been told by docs is what baco623 has been saying. The one thing I would add is keep supporting them no matter their decisions. Let them know your opinions, what my family and friends think is extremely important to me. They helped me have the courage to decide to do this. Also, my doctors told me that you can always say no, you can stop the tests, and you can ask to be taken off the list. I look at it as a precautionary thing, I don't know how long I'll be waiting so I'd rather be on the list than to get too sick and not even have a chance.
Prayers for all of you.
Prayers for all of you.
breatheforher
New member
My daughter is not currently as bad as you described yourself. She was just placed on 24/7 oxygen because her sats are now in low 80s. She is still active but slowing down and spends alot of time sleeping. She will start seeing a counselor this week and I hope that helps. She is a little spitfire (doctor said that is what has kept her alive this long) and basically told the transplant team they didnt know what they were talking about when they told her she was dying.
Thanks sorry i havent been on in a while just been very busy Mike has just lost all the hearing in his right ear caused by the myosin drugs so his options have now been reduced unfortunatly But I don't think he has been on ceferazone or ceftazdime so thanks I will ask his dr. He has an apt on the 28
Counseling helped mike alot he got alot off his chest , he had feelings I had no idea about because he kept them to his self. The heart breaking was that he felt like a burden, broke my heart to hear that but were able to get rid those foolish notions .and he now knows he has only enriched our lives and I would not change one hair on his head. Iam so proud to have him as a son I think the o2 will really help her feel better sending you prayers that she gets her spunk back very soon to breath former<3
I think the o2 will really help her feel better sending you prayers that she gets her spunk back very soon to breath former<3Hi- My name is Joanne and I also have a daughter with cf.She is 19 and needs to be listed for a transplant.She was just placed on oxygen 24/7 and also sleeps all day.Cannot get meds done and just came home from the hospital last week.Can you e-mail me so we can also talk in private. B1gm0mmaj@aol.com