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anonymous

New member
My husband has been told there isn't much more they can do for him medically and we should prepare for the worst. For the past year and half my husband's health has declined. First he needed O2, he was admitted for IV's every four months and with time he has needed to up his O2. We are very aware that he is ill. However, we don't believe in giving up or not fighting. Over and over again the Doctors call us to make sure we understand what is happening, to make sure I understand how sick he is. We hear it everyitme we go for check- ups, no matter what we say ( we have explained he has expressed his wishes to me, his Life Ins. from work is in order etc). I know their job is to informs us of his status and the possibilities of what can happen, but why must he hear over and over again he is dying or that we don't understand what is happening. I find this all so offensive, I live with my husband, I understand how sick he is and that there is no cure. But how do you give up ? His whole life he was told many things he would never do b/c of CF and he has accomplished alot. I don't believe dwelling on death is good for either one of us, mentally or physically. We have each other now, he is able to spend quality time with myself and our son. I think focusing on being happy and what he can do is a much better way to spend the time we have together. Since when did having a positive attitude and being happy become harmful? Am I wrong?
 

anonymous

New member
Hi dave-No he is not on the list. He never really wanted to consider a transplant, he feels is it trading one set of problems for another. We did however start to research the idea last year so that we could make a firm decision, but then his health declined so fast we were told he was too sick to be put on the list and that he probably wouldn't survive the surgery.
 

anonymous

New member
I don't know if this will help, but this is what I'd try. I'd request a meeting with his doctors yourself. Tell them point blank that you are both aware that he is dying and fully understand all of the implications/ramifications that it will have on each of you as well as your son and that you are preparing yourselves physically, mentally, emotionally, and financially as best as you can; however, at the same time, you are trying to fully enjoy whatever time he has left and do not appreciate how the doctors and staff are constantly dwelling on death instead of his life. Tell him that you choose to live in the moment and enjoy him for as long as he's here and you would appreciate it if they would stop focusing on death. Discuss it, YES, discuss his health, YES, but also discuss the happier things in his life - things you've done recently as a family, time you've spent with your ds, the weather, etc - basically treat him and you with compassion, as people with interests and a life outside of his cf and medical problems instead of as a "case". If you have a friend or family member who can go with you for support, that would be wonderful. If all else fails, is there another dr/staff that you can see??Prayers for you and your family and the memories you are making now! Good luck & keep us updated.
 

anonymous

New member
And, one more thing, tell them it's NOT denial, it's just choosing to make the best of the situation you've been given. Also, if you are afraid to talk to them about it, you could even type them a letter or even print this thread out and hand it to them.
 

anonymous

New member
It sounds like your husband has the same Dr that I do! He always sees the glass as half empty. I, too realize that w/ CF & being in my 30's that I won't live forever, but why dwell on it? Sometimes I think that since I'm not wringing my hands and stressed & depressed that my Dr thinks I'm in denial, as someone else mentioned above.You are doing good in your whole approach here. Being realistic, but choosing to be positve.As far as the transplant thing goes. I've read stories of CF patients having their transplants while at death's door & while that possibly makes recovery post transplant harder, it can be done. Some people just don't make it post transplant but I wonder if it's the same percentage whether they have a FEV1 of 20 or 30 pre transplant??Keep up the positive outlook <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

anonymous

New member
hello this is in response to the wife whose husband has cf, my brother had cf, and he's gone on to be with jesus now, but his doctor's were very negative with him also every time my brother and his wife would go to the dr. they would tell him you are very very sick you need to make peace with yourself your going to die! it was like that until the very end! so i say to you and your husband live life to it's fulliest think positive thoughts instead of negative one's. fight for life as long as their's breath left inside you! thank GOD for each and every day he gives you, because GOD is our healer and you could be a walking miracle, believe and have faith for nothing's impossible with our saviour! i'm going to be praying for you, hold on think good thoughts, be strong for one another, stay positive, and may GOD be near you now and forever.
 

RadChevy

New member
Hi, I am post lung tx 7 years due to CF.... doing great, feel great and life is unbelievabley good and healthy now. If I was just given a year of good health, lung tx would be worth it. As I am contact with many post lung tx folks, the majority will say after they get lungs it was worth it, even if a long recovery, they would do it again in a minute and if they were just given a month, 6 months, a year, 2 years of good health it was all worth it.As to trading one set of problems for anothe set... that is definitely from the mouth of a doctor who has not lived with CF and had a lung tx.... I say " I got rid of a death sentence and got life".There was a recent document out that clearly states that CFers do better post lung tx then they would of with their old CF lungs. So some of the facts you have might be outdated, provided by a doc for some reason does not believe in organ donation ( strange how they change their minds when someone in their family needs a tx, or they themselves!!).Also if your husband is truly on deaths door, their is living lobar lung tx for situations like that. You pick the date of tx and two living people donate a lung lobe of theirs.Also in 2005 the lung allocation rules are changing. The most needing will be given lungs first and the wait will be shortened for CFers.... this is a big plus for those with CF.... and someone like your husband would benefit from this new allocation method. The New Lung Allocation just passsed UNOS/OPTN yesterday.If you would like any more info, or talk or resources, happy to help. I have a web site, it is listed below. Lots of info there too.Joanne 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/Lungs for Life Foundationhttp://www.lungsforlife.orgJoanne's Bracelet, Transplant Awareness Bracelet, CF Awareness Bracelethttp://www.lungsforlife.org/other_ways/lfl_store.htm
 

anonymous

New member
Joann,I am glad that the proposal passed re: lung allocation. However, is the clause in there that states that pediatric patients get priority? I also think this is good, I've lived to my upper 30's and feel fortunate, but also, feel a little like I'd never get mine because there will always be someone younger on the list that desperately need them, so why get listed? Do you know how this scenerio would play out? Thanks
 

RadChevy

New member
Hi, Here is some info I posted to my web site group... the age issue is discussed. The document is 27 pages long, so not able to post the document in its entirty.Here is some sections of the new system that I cut and paste for you.It discusses the heart/lung allocation and the age issue. There is much more at the document and you probably would do best by reading it in its full context. Also read the old allocation rules to help you if you like. But there is a sectoin on the new allocation that shows the changes from the "old to the new" and it appears that heart/lung patients see no change. That is what I understand to read it. For each lung transplant candidate, the algorithm uses a set of clinical, demographic, disease severity, and physiologic reserve data to estimate how many days the candidate would live during the next year on thewaitlist (waitlist urgency measure) and how many days the candidate would live during the first year after a transplant (post-transplant survival measure). The difference between these two estimates is used to createan individual measure of transplant benefit.The algorithm then uses a balance of each candidate’s waitlist urgency and transplant benefit to assign that candidate an allocation score. Each candidate’s score then determines his or her priority for a lung offer inrelation to other transplant candidates on the lung waiting list. In order for scores to reflect the current medical condition of candidates on the waitlist, transplant centers may update the candidate’s clinical variables on the UNetsm system at any time to reflect changes in medical condition that may affect candidate priority for a lung offer.4. How the Proposed System Assigns Priority for LungsThe proposed lung allocation algorithm will assign priority for donor lungs to candidates age 12 and older based on a calculation of the medical urgency of patients on the waitlist and the projected transplant benefitafter transplantation. A candidate’s waitlist urgency is measured by the expected days of life during the next year that would result if the candidate did not receive a transplant (remained on the waitlist). A candidate’s post-transplant survival is measured by the expected days lived during the first year posttransplant. The algorithm will assign a Lung Allocation Score to each patient active on the lung transplant waiting list. The Lung Allocation Score is calculated from the difference between a patient’s transplantbenefit measure (post-transplant survival measure minus waitlist urgency measure) and the patient’s waitlist urgency. The calculation of the score is based on patient characteristics that have the same effecton mortality for all patients, and upon a few characteristics that have distinct effects for particular diagnosis groups. Patients under age 12 will continue to be allocated lungs based on waitlist time and ABO bloodtype. Pediatric donor lungs (0-17 years) will be allocated preferentially to pediatric patients, as more specifically described in Section G below.The analyses identified factors associated with waitlist urgency and factors associated with post-transplant survival. For the purposes of identifying risk factors that had distinct effect in candidates with particulardiagnoses, transplant candidates were classified into four major diagnosis groups. The diagnosis groups were categorized into four broad groups based on the clinical characteristics of the various diagnoses forcandidates awaiting lung transplantation and on existing data for the survival patterns in these candidates. Within each group are various illnesses that share similar clinical characteristics and/or similar risk factorsfor urgency on the waitlist and survival following a transplant. The groups are as follows:• Group A consists of candidates age 12 and older with obstructive lung disease. Group A includeschronic obstructive pulmonary disease (COPD), such as alpha-1-antitrypsin deficiency andemphysema, lymphangioleiomyomatosis, bronchiectasis, and sarcoidosis with mean PA pressure =30 mmHg. 3• Group B consists of candidates age 12 and older with pulmonary vascular disease. Group Bincludes primary pulmonary hypertension (PPH), Eisenmenger’s syndrome, and other uncommonpulmonary vascular diseases.• Group C consists of candidates age 12 and older with cystic fibrosis (CF) and immunodeficiencydisorders such as hypogammaglobulinemia.• Group D consists of candidates age 12 and older with restrictive lung diseases. Group D includesidiopathic pulmonary fibrosis (IPF), pulmonary fibrosis (other causes), sarcoidosis with mean PApressure > 30 mmHg, and obliterative bronchiolitis (non-retransplant).With every candidate assigned to a diagnosis group, additional analyses were undertaken to identifyspecific risk factors that varied by diagnosis group. Hazard ratios associated with these factors werecalculated based on data from all lung candidates listed and transplanted during this time interval.Factors Used to PredictRisk of Death on the Lung Transplant Waitlist1. Forced vital capacity (FVC)2. PA systolic (Group A, C, D)3. O2 required at rest (Group A, C, D)4. Age5. Body mass index (BMI)6. Insulin dependent diabetes7. Functional status (New York Heart Association class)8. 6-minute walk distance9. Ventilator use10. Diagnosis (see section D for details)Factors That PredictSurvival After Lung Transplant1. Forced Vital Capacity (FVC) (Group B, D)2. PCW pressure = 20 (Group D)3. Ventilator use4. Age5. Creatinine6. Functional Status (NYHA class)7. Diagnosis (see section D for details)G. Pediatric Candidates and Pediatric DonorsPediatric candidates make up a small but important percentage of the lung transplant waitlist. In determining how best to allocate donor lungs to this group, the Subcommittee examined, by age, candidateson the OPTN waitlist to determine the incidence of diagnosis, patterns of outcomes, and the impact of patient age on waitlist mortality and outcomes. From this analysis, the Subcommittee determined thatpediatric lung candidates age 12 years and older were similar in spectrum of diagnosis and outcome to adult lung candidates. The data also demonstrated that pediatric candidates under age 12 had a differentspectrum of diagnoses and outcomes from lung candidates 12 years and older. Upon further study of the available data, the Subcommittee found that, over the past seven years, only 135 lung transplants had beenperformed on patients under age 12. Of that number, 92% were transplanted with lungs recovered from donors under age 12.Based on the analysis outlined above, the Lung Allocation Subcommittee, divided pediatric candidates into two groups: adolescent candidates (12-17 years) who will receive offers based on Lung Allocation Scorealong with adult candidates, and young pediatric candidates (0-11 years) who will receive offers based on waiting time. When young (age 0-11) candidates reach age 12, they will be prioritized for donor lungsbased on their Lung Allocation Score. The age demarcation for pediatric candidates was also created to allow for practical considerations; size isan important factor in assessing donor lung suitability. Most younger pediatric donor lungs are best suited 13 for a younger pediatric candidate of similar size. The Subcommittee also noted that it is rare in clinicalpractice to reduce the size of adult donor lungs for transplant into a young pediatric candidate.The OPTN/UNOS Pediatric Transplantation Committee supported the goals of the lung proposal submitted for public comment in August 2003, but was concerned that the lung allocation algorithm, as then written,did not fully address issues of importance to ensure equitable lung allocation to pediatric candidates. Pediatric patients experience specific challenges when waiting for transplant. Children and adolescents faceongoing growth failure and development issues that increase urgency for transplant. In order to address these concerns, the Pediatric and Thoracic Committees established the Joint Pediatric-Lung Allocation Subcommittee. Through the collaborative efforts of the Joint Subcommittee, the current lung allocation proposal recognizes these pediatric needs and differences by assigning levels of pediatric preference in the allocation of pediatric donor lungs. The proposed lung allocation algorithm will offer adolescent (age 12-17) donor lungs first to adolescent candidates (age 12-17) based on their Lung Allocation Score, then to candidates age 0-11 based on waitingtime, and finally to adult candidates (age 18+) based on their Lung Allocation Score. Lungs from young pediatric donors (age 0-11) will be offered first to candidates aged 0-11 by waiting time, then to adolescentcandidates based on the Lung Allocation Score, finally to adult candidates based on their Lung Allocation Score. Lungs from donors age 18 and older will be offered first to candidates 12 years old and older basedupon their Lung Allocation Score, and then to younger pediatric candidates 0 – 11 years based upon their waiting time. A similar allocation sequence was modeled by the SRTR and reviewed by both the Pediatric and Thoracic Committees. In the statistical simulation model of a proposed allocation system with assigned adolescent and young pediatric candidate preference, the number of lungs transplanted into pediatric recipients morethan doubled from the model’s projections for the current system. The model shows that the proposal first submitted for public comment also would increase the number of pediatric lung transplants. The number ofpediatric lung transplants is highest under the system most similar to the present proposal assigning preference for children in the allocation of all pediatric donor lungs. The Committees were cautioned to assess trends suggested by the model rather than actual numbers, which for children are expected to be small relative to adults. Finally, the analysis suggests a decrease in lung waitlist deaths and increase in lung post-transplant deaths with either of the modeled proposed systems. Differences between the twomodeled proposed systems are relatively small. The Committees concluded, therefore, that the present proposal provides greatest opportunity for additional pediatric transplants with minimal, if any, expected disadvantage to pediatric or adult patient survival.Assigning priority to pediatric lung candidates follows a precedent established by and currently used in other organ allocation systems. Currently, in the allocation systems for kidney, liver, and heart, pediatric(0-17 years) candidates are assigned some form of priority to address and acknowledge the growth and development concerns as well as, in the case of liver and heart, the benefit of effective matching for age toimprove post-transplant function and survival. Adolescents make up approximately twenty percent of all deceased lung donors 12 years and older. When compared to adults on the waiting list, a higher proportion of children and adolescents die awaiting lung transplants and a smaller proportion receive lung transplants. The proposed lung allocation system, with assigned pediatric preference, may help to improve the opportunity for transplant for adolescent candidates. The Joint Pediatric-Lung Allocation Subcommittee and full Committ es acknowledge that the proposed system will not directly address improving access to donor lungs for younger pediatric (0-11years) candidates. The Joint Pediatric Lung Allocation Subcommittee is committed to exploring additionaloptions, including development of a waitlist urgency/transplant benefit system for younger pediatric patients. Hopefully, as additional data are collected as a result of the implementation of this proposal, development of suitable models for this age group will become possible. Once developed, such models would be recommended as further enhancements to the policy. K Allocation of Heart-Lung BlocsUnder the proposed lung allocation algorithm, heart-lung candidates will continue to appear on both heart and lung match runs. Heart-lung candidates aged 12 and above will receive a Lung Allocation Score asdescribed above. Heart-lung blocs will be allocated according to the existing policy for heart-lung allocation, Policy 3.7.7 (Allocation of Thoracic Organs to Heart Lung Candidates). It is intended that theproposed lung allocation algorithm will prioritize heart-lung candidates on the waiting list in conjunction with the isolated lung transplant candidates. L Implementation of the Proposed Lung Allocation Algorithm and Transitioning of Candidates on the Waiting ListThe Lung Subcommittee anticipates that the proposed lung allocation algorithm will be implemented upon final approval by the OPTN/UNOS Board of Directors and upon completion of computer programming. Atthat time, the proposed lung allocation will apply to all candidates already registered on the lung waitlist and all candidates who register on the waitlist thereafter. Transplant centers will be notified of the policymodifications and provided a period of approximately six months to record necessary medical data in the UNet system for candidates listed at that time. Implementation of the algorithm itself would then follow byapproximately three months. To help ensure a smooth transition to the modified lung allocation algorithm and entry of candidates’medical values in preparation for implementation, the Committee determined that candidates who are already registered on the waitlist on the date of implementation and who have no or incomplete data willreceive a Lung Allocation Score of zero. Candidates with a Lung Allocation Score of zero will have the lowest priority compared to all other candidates with Lung Allocation Scores; they will be prioritized within the group of candidates with scores of zero based on the waitlist time they have accrued as of the time of policy implementation and their ABO blood type.3.7.7 Allocation of Thoracic Organs to Heart-Lung Candidates (No changes) Joanne Schum
 
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