Breathe Easy Facts

The first respirator, or "iron lung," which was invented by Philip Drinker and Louis Agassiz Shaw
in 1927, was made up of a cheap galvanized iron box, a bed and two household vacuum cleaners.
Warren E. Colins of Boston manufactured a second respirator after the Consolidated Gas 
Company of New York donated money to Harvard University. This model was first used on
Oct 12, 1928, on a little girl suffering from polio at children's Hospital in Boston. The iron lungs 
consisted of a metal tank in which the patient's body was enclosed with the head outside. By
alternating negative and positive pressure in the tank, breathing was maintained for long periods.

. According to "Pulmonary Respiratory Therapy Secrets," candidates for lung transplantation are those who have "untreatable end-stage pulmonary disease of almost any cause, no other significant medical diseases, substantial limitation of daily activity, limited life expectancy, are ambulatory with rehabilitation potential, have an acceptable nutritional status and a satisfactory psychosocial profile and emotional support system."  Something to keep in mind when you're being evaluated.

INTRODUCTION THIS JOINT STATEMENT OF THE AMERICAN SOCIETY FOR TRANSPLANT PHYSICIANS (ASTP) AMERICAN THORACIC SOCIETY (ATS)/EUROPEAN RESPIRATORY SOCIETY (ERS)/INTERNATIONAL SOCIETY FOR HEART AND LUNG TRANSPLANTATION (ISHLT) WAS APPROVED BY THE ATS BOARD OF DIRECTORS FEBRUARY, 1998

More than 6,400 lung transplants have been performed since the first successful operations in early 1980s
(1). Lung transplant programs now exist in many countries. Internationally, the number of donor organs available is far fewer than the number of patients with end-stage lung disease.  Because of this, many candidates die on the waiting list, and the average wait to receive a donor organ may approach 2 yr
(2). Overall survivals are between 60 and 65% at 2 yr and approximately 40% at 5 yr (1). Considering the resource limitations and the importance of assuring optimum outcomes, we believe that international guidelines for selection of appropriate candidates for lung transplant will ensure a fair distribution of donor organs. Transplant physicians and surgeons representing the International Society of Heart and Lung Transplantation, the American Society of Transplant Physicians, the American Thoracic Society, the European Respiratory Society, and the Thoracic Society of Australia and New Zealand have agreed on the information in the following document as acceptable guidelines for candidates for lung transplantation. Our aim is that this document will assist physicians throughout the world who are treating patients with pulmonary diseases to identify potential candidates for lung transplantation.
This document is divided into two sections. The first describes general health guidelines that all candidates for lung transplantation should meet; the second describes disease-specific exercise or lung function criteria that are generally felt to identify patients whose poor prognosis from their underlying diseases justify transplantation. Candidates for either live donor organs or cadaver donor organs should meet the same selection criteria. In all cases it must be remembered that these guidelines are a general statement and that individual patients might have specific circumstances that do not meet all guidelines yet would be acceptable transplant candidates.

Lung transplantation remains a developing field within pulmonary medicine and thoracic surgery. It is anticipated that with increasing experience and knowledge the state of the art will change and these guidelines will require review and modification.

GENERAL GUIDANCE FOR CANDIDATE SELECTION FOR LUNG TRANSPLANTATION

Physicians evaluating patients for lung transplantation should ensure that the patient has received or is receiving maximum, optimal medical therapy for his disease but nevertheless has declining function. In general, candidates should have chronic disease for which no further medical or surgical therapy is available and survival is limited; lung transplantation is rarely an option for acutely, critically ill patients. Comorbid medical conditions should also be optimally treated in transplant candidates, and routine preventive medicine measures (such as mammograms, Pap smears, and colon cancer screening) should be completed where appropriate.

Older patients have a significantly worse survival rate than younger patients (1). The following guidelines are suggested.

Age limits:
Heart-lung transplants ~ 55 years
Single lung transplants ~ 65 years
Bilateral lung transplants ~ 60 years

 
GENERAL MEDICAL CONDITIONS THAT IMPACT ON ELIGIBILITY FOR LUNG TRANSPLANTATION.
The following are a list of general medical conditions that are felt to impact on the long-term outcome of lung transplant recipients. Medical or psychosocial treatment to address these issues should be instituted when appropriate in patients who do not currently, but may ultimately, meet the criteria for lung transplantation.  However, in most cases, referral should not be delayed while patients are undergoing corrective treatment.  Other medical conditions which, when they have not resulted in organ damage, are generally acceptable in candidates for lung transplantatione.g., systemic hypertension, diabetes mellitus, peptic ulcer disease, should also be optimally treated and well controlled. In the presence of any comorbid medical condition with the potential for end organ damage, a careful search should be made for evidence of organ dysfunction.

Symptomatic osteoporosis is a relative contraindication to transplantation and the potential risk to acceptable long term outcome should be assessed on a case by case basis (3). Both symptomatic and asymptomatic significant disease requires treatment that should be initiated prior to transplant. Patients should be fully investigated and followed by appropriate objective measures, i.e., bone densitometry.  Severe musculoskeletal disease affecting the thorax, e.g., kyphoscoliosis, is a relative contraindication, and progressive neuromuscular disease is an absolute contraindication to lung transplantation.  Current use of corticosteroids is not a contraindication to transplantation; however, all attempts to discontinue these drugs or at least reduce the dose to  20 mg/d prednisolone or prednisone should be made (4).
Nutritional issues are an important predictor of surgical outcome (5, 6). Patients with an ideal body weight (IBW)< 70% or > 130% percent require either weight gain or weight loss to become eligible for transplant. Candidates for lung transplantation must have been free of substance addiction, e.g., alcohol, tobacco, narcotics, for at least 6 mo. Appropriate preoperative biochemical monitoring is recommended in at-risk patients.  Psychosocial problems that are unable to be resolved and that have a high likelihood of impactingnegatively on the patient's outcome, e.g., poorly controlled major psychoaffective disorder, inability to comply with complex medication regimen, are a relative contraindication. A documented history of noncompliance with medical care or treatment plans even in the absence of documented psychiatric problem is a relative contraindication. Requirement for invasive ventilation is a relative contraindication to transplant. Patients receiving noninvasive ventilatory support who meet all other criteria are eligible for lung transplantation.  Colonization with fungi or atypical mycobacteria is not an absolute contraindication to transplantation. Cases should be considered on an individual basis, and special care should be taken when a unilateral transplant is considered. When possible, attempts preoperatively to eradicate colonization with antibiotic therapy are appropriate.  Adequately treated M. tuberculosis is not a contraindication to lung transplantation.

Current Contraindications

Dysfunction of major organs other than the lung is a contraindication, particularly renal dysfunctioncreatinine clearance of < 50 mg/ml/minbecause of the impact of immunosuppressive drugs on renal function (7). Patients with significant untreatable coronary artery disease or left ventricular dysfunction warrant consideration for heart-lung transplant. Infection with HIV.  Active malignancy within the past two years with the exception of basal cell and squamous cell carcinoma of skin. In addition, recent data on recurrence of tumors posttransplant suggest that a waiting period of at least 5 yr is prudent for extracapsular renal cell tumors, breast cancer stage 2 or higher, colon cancer staged higher than Dukes A, and melanoma, level III or higher (8).  Hepatitis B antigen positivity.  Hepatitis C with biopsy-proven histologic evidence of liver disease.

Lung transplant is not contraindicated per se in patients with systemic disease, e.g., collagen vascular
processes, diabetes mellitus (9). Each potential candidate should be considered on an individual basis with particular attention paid to the presence of any target organ damage outside the lung that might affect long-term outcome. This would constitute a relative or absolute contraindication.

Diagnostic and Prognostic Investigations before Referral

The following list of studies are considered useful by most transplant centers in assessing potential candidates. Queries regarding specific center requirements should be directed to that center and, when possible, efforts should be made to avoid duplicate studies.

     *Full lung function tests
     *Exercise performance measured by a standardized test, e.g., six-minute walk
     *Electrocardiogram
    * Echocardiogram
     *High resolution computed tomography (HRCT) of the thorax in patients with parenchymal disease, pleural disease, or previous thoracic  surgical procedures
     *Stress echocardiograme.g., dobutamine, dobutamine PET, sestamibi, etc.and/or coronary angiograms in patients at high risk for coronary artery disease
    * 24-hour creatinine clearance
    * Liver function studies

DISEASE SPECIFIC GUIDELINES

1. Nonbronchiectatic Chronic Obstructive Lung Disease

This disease category encompasses a number of diagnoses of which the most common are emphysema,
chronic bronchitis, and bronchiolitis obliterans. Every effort should be made to exclude asthma and to maximally treat any reversible component of the airways disease prior to referral for transplant workup. Pulmonary rehabilitation and long-term oxygen therapy should also be included in medical management prior to referral to a transplant center. Other treatment options such as volume reduction surgery for emphysema patients may also be considered in appropriate candidates (10). It is inherently difficult to accurately predict survival in many patients with advanced obstructive disease (13). In terms of transplant outcome, therefore, some of these patients may experience improved functional capacity but not necessarily improved survival.

Guideline:

COPD patients are considered potentially to be in the transplant window if they meet the following criteria (16, 17):

FEV1 < 25% of predicted (without reversibility) and/or PaCO2  55 mm Hg (7.3 kPa) and/or elevated pulmonary artery pressures with progressive deterioration, e.g., cor pulmonale. Preference should be given to those patients with elevated PaCO2 with progressive deterioration who require long-term oxygen therapy, as they have the poorest prognosis (18).

2. Cystic Fibrosis and other Bronchiectatic Diseases

Patients with cystic fibrosis have special problems related to the microbiology of their pulmonary secretions, particularly with respect to resistant organisms (19, 20). Controversy exists as to the outcome of patients colonized with multiply resistant P. aeruginosa and B. cepacia (biologically, B. cepacia is inherently multiply resistant). The following definitions may be used to categorize the resistance of pseudomonal and related organisms (21):

A multiple resistant organism is resistant to all agents in two of the following classes of antibiotics: the
beta-lactams, aminoglycosides and/or quinolones.

A pan-resistant organism is resistant in vitro to all groups of antibiotics.

A substantial number of patients will have organisms that are pan resistant in vitro. However, in vitroresistance does not equate with in vivo resistance. Different combinations of antibiotics may function synergistically in vivo. Thus multiple resistance is not a contraindication to transplantation in this group of patients. Colonization with pan-resistant organisms should be considered a relative contraindication to transplantation because of concern about long-term outcomes in these patients. Occasionally, specialized testing of different combinations of antibiotics against organisms considered to be pan-resistant to the usual antibiotic regimens may demonstrate sensitivity to new drug combinations (synergy testing). Patients with presumed pan-resistant organisms should be referred to a transplant center capable of this type of antibiotic sensitivity testing, and each patient should be assessed on an individual basis. Listing of such patients should be determined based on individual center experience.

Microbiologic review of the sputum of listed patients should be done on a periodic basis, e.g., every 3 mo, or if intercurrent antibiotic treatment has been necessary. The following criteria identify patients potentially within the transplant window.

Guideline:

FEV1  30% predicted or rapid progressive respiratory deterioration with FEV1 > 30% predicted, e.g., increasing numbers of hospitalizations, rapid fall in FEV1, massive hemoptysis and increasing cachexia despite optimal medical management. Resting arterial blood gases obtained while patient is breathing room airPaCO2 > 6.7 kPa (50 mm Hg); PaO2 < 7.3 kPa (55 mm Hg)are useful criteria and are associated with a prognosis of < 50% survival in 2 yr; however, patients should be considered candidates for transplant if they meet FEV1 criteria even though they may not yet be markedly hypercapnic or hypoxemic (22). Young female cystic fibrosis patients who deteriorate rapidly have a particularly poor prognosis (23). These patients should be evaluated on an individual basis regardless of physiologic criteria.

Patients may present for transplant consideration with bronchiectasis from other causesimmunodeficiency syndromes, immotile or dysfunctional cilia syndromes, post-infection, etc. Few data are available regarding projected survivals in such patients with advanced disease, and that makes it more difficult to formulate guidelines for selection. In general, the lung transplant community has followed the guidelines listed above for cystic fibrosis patients.

3. Idiopathic Pulmonary Fibrosis (Cryptogenic Fibrosing Alveolitis)

Idiopathic pulmonary fibrosis (IPF) refers to patients without evidence of other systemic disease who present with diffuse fibrotic changes in the lung. The rapid progression of this disease and the high mortality mandates early referral (24). It is recognized that this is a disease that is more common among older people, and therefore coexistent pulmonary and nonpulmonary morbidities that may contraindicate transplant are common. Pulmonary conditions for which the patient should be evaluated prior to referral are bronchogenic carcinoma, pulmonary tuberculosis, and bronchiectatic areas colonized with pathogenic organisms. A CT scan with high resolution images is useful in assessing these issues as well as highlighting atypical features of a patient's disease that may suggest an alternative diagnosis. Other frequent medical problems mandating careful evaluation are steroid-related morbidities and symptoms of coronary artery disease. Medical therapy, and especially oxygen therapy, should be optimized and frequently reassessed in these patients. Testing should be done both at rest and during exercise. Optimization of therapy may include the withdrawal of steroids or other cytotoxic agents where no meaningful benefit has been achieved.

Patients who meet the following criteria are considered to be potentially within the transplant window.

Guideline:

Symptomatic (including rest or exercise oxygen desaturation), progressive disease with failure to improve or maintain lung function while being treated with steroids or other immunosuppressive drug therapy. Clinical assessment at frequent intervals, e.g., every 3 mo, is extremely useful in evaluating the progression of disease or failure to improve on drug therapy.  If (when) pulmonary function is (becomes) abnormal, even though the patient may be minimally symptomatic, serious consideration should be given to referral to a transplant center for initial evaluation. Patients are often symptomatic and have advanced disease when the vital capacity falls below 60 to 70% predicted and/ or the diffusing capacity (corrected for alveolar volume) falls below 50 to 60% predicted.

Systemic Disease with Pulmonary Fibrosis

Pulmonary fibrosis is a common lung pathology in a number of systemic diseases, e.g., scleroderma, rheumatoid arthritis, sarcoidosis, post-chemotherapy. In patients with these diagnoses, the manifestations of the underlying process are highly variable and each patient should be considered on an individual basis. In general, evidence of quiescent systemic disease is required. It is necessary for all patients to meet general selection criteria and to have failed optimum medical therapy to be considered for lung transplantation. The criteria for timing of selection for transplant listed above should be followed.

4. Pulmonary Hypertension without Congenital Heart Disease

Severe pulmonary hypertension occurs as a primary process or as a secondary manifestation of another disease. Typical causes of secondary pulmonary hypertension include thromboembolic disease, venoocclusive disease, capillary hemangiomatosis, medication-related, and collagen vascular disease. Patients with these diagnoses generally have a poor prognosis (28).

Significant advances in long-term vasodilator therapy have recently shown encouraging results in patients with primary pulmonary hypertension (29). Less information is available in patients with pulmonary hypertension as a secondary manifestation of other disease; however, studies in selected patients are ongoing. In some cases surgical therapy either a trial septostomy or thromboendarterectomy depending on the underlying primary diagnosishas been reported to improve symptoms and possibly survival (30, 31).

Potential candidates for lung transplant with a diagnoses of primary pulmonary hypertension should be
evaluated by a center with experience in vasodilator therapy, and all patients should be evaluated for
vasodilator therapy and other medical or surgical interventions prior to transplant consideration. The following criteria should be met to consider a patient within the transplant window.

Guideline:

Symptomatic, progressive disease which, despite optimal medical and/or surgical treatment, leaves the patient in NYHA III or NYHA IV. Where available prostacyclin should be considered the gold standard for medical vasodilator therapy if there is no objective indication that calcium channel blockers may be useful.  Useful hemodynamic parameters in assessing the failure of optimal pre-transplant therapy include a cardiac index of less than 2 L/min/m2, a right atrial pressure of more than 15 mm Hg, and a mean pulmonary artery pressure greater than 55 mm Hg (28).

5. Pulmonary Hypertension Secondary to Congenital Heart Disease (Eisenmenger's Syndrome)

Pulmonary hypertension in patients with congenital heart disease behaves differently prognostically than in patients with other types of pulmonary hypertension. Hemodynamically, similar pulmonary artery pressures are associated with better cardiac function and lower right atrial pressures and a somewhat better prognosis (32).  Predictors of survival are less reliable. The role of vasodilator therapy in pre-transplant management of these patients is not yet clear.

Guideline:

Severe, progressive symptoms with function at NYHA III or NYHA IV level despite optimal medical management

6. Combined Pulmonary and Other Organ Failure

Patients presenting with failure of more than one organ have occasionally been considered candidates for multiorgan transplantation.  Advanced liver disease, for example, can be associated with pulmonary
hypertension (33). Selected patients with liver and lung disease may be candidates for liver-lung transplants (34). Similarly, patients with heart and lung disease or kidney and lung disease or some other organ failure combination might occasionally be candidates for a multiorgan transplant. In each case the candidate should meet all the criteria for selection for the individual transplant. Furthermore, since experience in this area is limited and outcomes not well studied, only well established centers with transplant programs in each of the organ systems involved should consider such procedures.

PEDIATRIC LUNG TRANSPLANTATION

Cardiopulmonary Vascular Disease

Lung transplantation in children is evolving (35). Diseases that are potentially amenable to lung transplantation include primary pulmonary hypertension, pulmonary hypertension associated with structural heart disease, pulmonary vein stenosis, pulmonary hypertension associated with parenchymal lung disease, and congenital abnormalities of lung development or of lung adaptation to extrauterine life. As in adults, maximal medical therapy including vasodilators and supplemental oxygen should be instituted before children are considered for transplantation. Since the diagnoses are varied and the disease spectra diverse, prognostic indicators have been difficult to develop; thus empirical criteria are the primary means of selecting candidates.

Guideline:

     Disease no longer responding to maximum medical and surgical treatment
     Moderately severe or severe functional impairment (NYHA Class III or IV)
     Right ventricular failure, severe cyanosis, and low cardiac output

In order to arrive at appropriate decisions it is necessary to follow up these patients with great care in centers that specialize in pediatric work. Careful assessment of all these patients is vital to exclude other correctable cardiac defects contributing to pulmonary hypertension.

Pulmonary hypertension with parenchymal lung disease or abnormalities of development or adaptation need to be individually assessed as only single cases of patients receiving transplants have been described. These diseases include: congenital diaphragmatic hernia, congenital surfactant protein B deficiency, and congenital cystic emphysematous lung disease.

Other Diseases

Other diseases presenting in advanced stages in children include among others cystic fibrosis, bronchiolitis obliterans, pulmonary fibrosis and bronchopulmonary dysplasia. It is often difficult, because of the limited available historical data, to make accurate predictions regarding survival. As in the case of the cardiopulmonarydiseases, patients may be considered candidates for transplant when progressive disability occurs (NYHA III or IV) despite optimal medical therapy. In the case of cystic fibrosis patients, guidelines for adult patients can be generally adapted to the pediatric population.

.
Patients' Wait for Organs Differs

   By LAURA MECKLER
 Associated Press Writer
WASHINGTON (AP) — In Nebraska, patients wait for nearly a year and eight  months for a liver transplant. In neighboring Iowa, the wait is just 46 days.  Disparities like this stretch across the country, according to a sweeping, seven-volume government report being released today and obtained Thursday by The Associated Press.  The differences in waiting times were found among all types of transplants. Federal officials said it was fresh evidence of how arbitrary geographic barriers make for an unfair system. They said that in New York City, patients waited nearly 10 times as long as similar patients across the Hudson River in New Jersey.
 ``It's a huge difference, and it's hard to ignore,'' said Dr. Claude Earl Fox, who heads the Department of Health and Human Services division that oversees the transplant program.  Why the gap? In some communities, people are more likely to donate organs, creating a larger supply there.  Also, the best transplant programs tend to attract large numbers of patients, creating longer waits in those areas.
Nebraska, for instance, is home to a large liver transplant program, as is Pittsburgh, where the wait for a typical patient with type O blood lasted 721 days.  Hoping to equalize waiting times, HHS has ordered a change in the way scarce organs are allocated. It is crucial to thousands of American families: Some 4,000 people die each year awaiting a transplant.
Right now, organs are distributed geographically, offered first to patients in the community where they are donated, then to patients in the region. The government wants to offer organs to the sickest patients first, no matter where they live, as long as they have a reasonable chance of survival.
Today's report was prepared by the leading opponents of a policy change, the United Network for Organ Sharing.  The group coordinates the transplant system under a contract with the government, which asked for the study. A copy of the 2,400-page document was obtained by the AP under the Freedom of Information Act.
The report also finds disparity in how effective the nation's 63 organ banks are at counseling families considering donation and at making transplants happen — reaching the same conclusion as an AP analysis in September.  In its examination of waiting times, the report looked at liver, heart, kidney, pancreas and lung transplants. In an attempt to control for variables that may affect waiting times, it analyzed the statistics by race, age, blood type and how sick patients were.  In virtually every instance, the report documented differences among regions and organ banks.
For instance, although the differences were narrower for the very sickest patients, even they waited just two days for a liver transplant in Oklahoma and Oregon — but 16 days in Maryland.
The differences have narrowed since 1996, the last year covered in the report, contended Dr. Joshua Miller,
president of the American Society of Transplant Surgeons. Transplant centers have stepped up efforts to make sure all of the critically ill patients have equal access.  In part, the disparity stems from inconsistent policies about how sick patients should be before they're put on a waiting list,  Miller said. Some have put patients on them earlier, creating longer lists.  The network and the government have working to change that.
 But on the larger issue of how to allocate scarce organs, the network and HHS have been fighting for months.
Transplant surgeons say the government proposal would lead to more deaths because sicker  patients would get more organs, and they are less likely to survive. "You can fight about it all day,'' said Dr. William Pfaff,
a surgeon at the University of Florida who heads the transplant network. "You're not going to drastically improve anyone's situation by shipping organs across the country.''
 But government officials point to differences like those between New York City and New Jersey, separated by a state line and a river, but with large differences in waiting times.  A New York patient with blood type O, the most common, would wait nearly twice as long for a new kidney, three times as long for a  heart and 10 times as long for a liver. ''An organ that could save a life may be literally stopped at the border,'' HHS Secretary Donna Shalala said. The report also found:
A large difference in organ banks' success at getting people to donate. In Mississippi, there were just 6.4 organ donors for every1,000 hospital deaths; in Madison, Wis., there were 34. Explanations included the program's effectiveness, the ethnic makeup of the community and the proportion of deaths that are medically appropriate for donation.  Blacks waited twice as long for kidney and pancreas transplants, because there are more blacks in need of transplant than there are black donors. Often, organs from black people make better medical matches for black patients. For all its detail, though, the report fails to give waiting times for
individual transplant hospitals — something government officials say patients need to choose among transplant programs....

 
Osteoporosis and lung transplantation: a prospective study.

Spira A, Gutierrez C, Chaparro C, Hutcheon MA, Chan CK

Division of Respirology, Department of Medicine, The Toronto Hospital,
University of Toronto, Toronto, Ontario, Canada.

STUDY OBJECTIVE: Osteoporosis is a well-recognized complication of lung transplantation that may significantly impair the quality of life of transplant recipients. We performed a prospective study of bone mineral density (BMD) before and after transplantation to determine the degree of bone mass loss associated with lung transplantation
Patients and design:  We conducted a prospective study of BMD in 28 patients with various end-stage respiratory diseases pretransplantation and 6 to 12 months posttransplantation. The BMD of the lumbar spine (LS) and femoral neck (FN) were measured. All 28 patients were treated only with vitamin D and calcium supplementation posttransplant. The primary endpoint was the percentage change in BMD. The secondary endpoint was the 
incidence of fractures posttransplant. A univariate analysis was conducted to determine the various risk factors associated with bone mass loss pretransplant and posttransplant. RESULTS: Prior to transplantation, moderate to severe bone disease was evident. The mean (+/- SD) pretransplant T score (the number of SDs from the peak
bone mass) and Z score (the number of SDs from the age-matched mean) for the LS were
-1.72 +/- 1.37 and -1.44 +/- 1.31, respectively. The mean pretransplant T score and Z score for
the FN were -2.65 +/- 1.01 and -1.5 +/- 1.43, respectively. Within 6 to 12 months posttransplant,
the mean BMD for the LS decreased by 4.76% (p < 0.001), while the mean BMD for the FN decreased
by 5.3% (p < 0.001). Five of the 28 patients (18%) suffered osteoporotic fractures posttransplant, while no 
fractures were documented pretransplant. The cumulative steroid dose posttransplant was associated with a
drop in BMD for the LS and FN (r = 0.39, p = 0.039 and r = 0.63, p < 0.001, respectively), while a negative association was found between cumulative steroid use pretransplant and baseline LS and FN T scores 
(r = -0.4, p = 0. 02 and r = -0.43, p = 0.023, respectively). CONCLUSION: Within 6 to12 months after lung transplantation, there is a significant decrease in BMD at both the LS and FN levels (approximately 5%) despite vitamin D and calcium supplementation. This drop in BMD is associated with a relatively high incidence of osteoporotic fractures posttransplant..

 
TRNSPLNTis a discussion list for organ transplant recipients and anyone else interested in the issues, experiences, and realities of living with an organtransplant. It also serves as an open forum for discussing,and
learning about, current issues affecting the practice of transplantation
and organ donation.

 
ORGAN PROCUREMENT AND TRANSPLANTATION NETWORK
AMENDMENTS OF 1999 DISSENTING VIEWS

H.R. 2418 overturns the principles which have governed the Nation's organ allocation system for fifteen years. The bill raises fatal constitutional concerns and irresponsibly inverts the roles of the Federal government and its contractor. In the end, H.R. 2418 poses a threat to the hopes and health of transplantpatients and their families.

The National Organ Transplant Act of 1984 (NOTA) created the Organ Procurement and Transplantation Network (OPTN), a national organ allocation system overseen by the Secretary of Health and Human Services.  Congress created the OPTN because `[a]n equitable policy and system is necessary so that individuals throughout our country can have access to organ transplantation when appropriate and necessary.'

Since 1984, Congress has emphasized repeatedly that the OPTN should serve all Americans as equitably as possible. The Organ Transplant Amendments Act of 1987 recognized that the OPTN was created `in order to facilitate an equitable allocation of organs' across the country. In the Transplant Amendments Act of 1990, Congress stressed that the OPTN was to assist `in the nationwide distribution of organs equitably among transplant patients.'  In 1996, the Senate passed a bipartisan NOTA reauthorization bill by unanimous consent, only to have this Committee fail to act on this important legislation. The Senate advised this Committee--

The original intent of the National Organ Transplant Act was to assure patients that no matter who they were or where they lived, they would have a fair chance of receiving an organ transplant. It is the beliefof the committee that the United States should adopt a consistent and fair system of allocation and move away from the persistent fragmentation and inconsistency that may have evolved despite the National OrganTransplant

In furthering the goal of a `consistent and fair system of allocation,' the Secretary published the Final Rule governing the OPTN on April 2, 1998.  Because of the OPTN's failure to remedy geographical and ethnic inequities across the country, the Final Rule calls for more equitable sharing of organs and for uniform, objective criteria for patient listing.  As the Final Rule states, it `does not establish specific allocation policies, but instead looks to the organ transplant community to take action to meet the performance goals.'

We believe this approach to be wholly consistent with the intent of Congress. Allocation policies must be developed `bottom up' through the expertise and experience of patients and practitioners. But the Secretary is given oversight authority to ensure those policies reflect the public interest. When those policies fail to achieve the ends envisioned by Congress, as they are failing today, the Secretary plays an indispensable role in correcting these failures.

The Final Rule has been supported by the major transplant patient organizations, including the American Liver Foundation, Transplant Recipients International Organization and the National Transplant Action Committee.  But the efforts of the current OPTN contractor, the United Network for Organ Sharing (UNOS), to derail the Final Rule have had a corrosive effect on public confidence in the organ allocation system.  Misinformation has been spread to frighten patients, communities of color, and the poor. Patient listing fees which should have been expended on health care have been squandered on a lobbying and public relations campaign.

The result has been genuine harm to the public health. The organ allocation system is an inequitable patchwork of ad hoc sharing orparochial hoarding.  Patients live or die based on where they live--not on how sick they are.  African Americans and the poor continue to face disproportionate barriers to referrals, waiting lists, and transplants. Most recently, states including Louisiana, Texas and Wisconsin have enacted hoarding laws intended to impede organ sharing. And to crown this dismal record, a one-year moratorium on the Final Rule's implementation was enacted in the Omnibus Appropriations Act of 1999 (P.L. 105-277).

The provision which blocked the Final Rule also mandated an Institute of Medicine (IOM) study of the organ procurement and transplantation system.  The study advocates major changes in the organ allocation system and endorses active oversight by the Secretary. The IOM `recommends that the DHHS Final Rule be implemented' because broader sharing `will result in more opportunities to transplant sicker patients without adversely affecting less sick patients.' The study dismisses claims that donation rates would suffer or small transplant centers would close under the Final Rule.

Perhaps most importantly, the IOM cites the need for strong federal oversight of the allocation system, concluding The Department of Health and Human Services should exercise the legitimate oversight responsibilities assigned to it by the National Organ Transplant Act, and articulated in the Final Rule, to manage the system of organ procurement and transplantation in the public interest.

In contrast, H.R. 2418 completely eliminates meaningful oversight of the OPTN. It divests the Secretary of any authority to require anything of the OPTN. Functions of a `scientific, clinical, or medical' nature would be in the `sole discretion' of the OPTN. As the bill's sponsors readily acknowledge, this encompasses practically everything of meaning, including the Nation's organ allocation and transplantation policies.

Moreover, any changes to those few minor `administrative and procedural functions' remaining under the Secretary's purview would require the `mutual agreement' of the Secretary and the OPTN. H.R. 2418 advances the absurd proposition that the OPTN should exercise an absolute veto over any proposed changes to the organ allocation system, whether they affect the number of organs it allocates or the number of paper clips it purchases. Indeed, were H.R. 2418 to become law, nothing short of an act of Congress would serve to alterthe nation's organ allocation system in the absence of the OPTN's autocratic consent.

The fallacy of shielding the OPTN from accountability and oversight by the Secretary is compounded, in the view of the Department of Justice, by significant constitutional concerns involving the separation of powers.' In creating an unregulated monopoly affecting the lives and health of Americans, the Department regards H.R. 2418 as an unconstitutional delegation of authority to a private entity because it `goes beyond * * *

 
Tx Centers URL's thanks to Michigan Suzie <bikerchick11@JUNO.COM>
Heres some addresses for your reference........The Coalition of Major Transplant Centers

ANSWERS TO QUESTIONS ABOUT:
RETURNING TO WORK AFTER LUNG TRANSPLANT

The recent week long series, held at Second Wind Chat Hour in March provided an opportunity for post lung transplant patients to talk about their experience with returning to work.  For the pre transplant patient, it answered the question that most have on their mind: “Can I return to work after lung transplant?”  At Chat Hour, the overwhelming response was that you can return to work and many do.   It also provided for many of us the chance to ask questions and attain ideas as to how to handle work situations.

In this article, I have put together the questions that were asked and some of the answers that were offered by a career counselor. In addition Beryl Callaghan, a career counselor, who lives in Canada, who is also the mom of CF children, provided me with some “situational examples” that will help those looking for jobs.

A suggestion for further help is to visit your local library, inquire if they have a career department with job listings and reference material.  Or check your local phone book under career counseling, and vocational services.

QUESTIONS AND ANSWERS:

1) How do I explain a gap on my resume of 2-3 years, in an interview, due to transplant?  Be prepared before your interview, as to how you will answer this question. Surprise, and coming up with an answer on the spot, is one of the most difficult aspects of an interview.  If asked, do not give more information than what you’re asked for.  A good explanation, and one that is truthful: is to tell them that you did have some surgery, but you are now able to return to work, with your doctors okay, and you are looking forward to the challenge of working and how you would find this particular company of great interest.  In other words, emphasize your enthusiasm for returning to work.  You do not have to reveal the type of surgery you had.
2) How do I handle fellow employees that are ill?  If at all possible, avoid anyone that you may feel is infectious.  Be aware of the signs of illness, running nose, sniffling, coughing, sneezing, or someone that says they have a headache or are sore all over.   You may want to consider taking the day off if numerous employees are complaining or obviously sick.  If you can, wear a mask and be sure to wash hands frequently and when touching any public area, be sure to wash your hands.   Another suggestion is to have alcohol pads with you at all times and wipe phones, pens, pencils that may have a number of people using them.  Computer keyboards, mouse, mouse pad and copier are other sources of finger touches.  The best of all worlds is when you are able to talk about your immune suppression. Make others aware that if they are ill, to let you know, so that you can take the necessary precautions. Let them know you will prefer to avoid them until they are feeling better. Amazingly, once you make germs an open topic, and the knowledge of how important it is that germs not be passed to you, you will notice employees all using extra care to avoid sickness for themselves.  You will also notice the use of alcohol pads by more and more people.
3) What questions are lawful in an interview, and what are unlawful questions?  Disability: Lawful to ask:  “Do you have any impairments (physical, mental or medical) that would prevent you from performing in a reasonable manner in the activities involved in the job or occupation for which you applied?”  Disability: Unlawful to ask:  “Do you have a disability?  Have you been treated for any of the following diseases?”   Follow up to those questions: If the job you are applying for requires you to lift items over a certain weight, and you are asked if you can lift that much – it is a lawful question.
4) What should I do if I am asked a question I feel is not proper, or prying into my health, or they do ask an unlawful question?  How do I still answer so that I may be in contention for that job?  Many employers do not know what is lawful or not to ask.  So it is possible they may ask the above questions.  It may not mean that they would be a terrible company to work for but just that the interviewer is still old fashioned enough not to know what is politically correct.  If you are really interested in the job, then you have to answer the question as best you can and make light of your illness so the employer can see you have a sense of humor.   You can even say, “I was hoping not to be asked a question like this”, laugh and say, “but I do -----------!”   After the interview, if you feel you would not like to work for this employer, this is your choice.  If you do not answer the question, you will not be offered the job and if you walk out, you may also ruin your chances for another job, if this gets out to any other employer.  It may mark you as being difficult, rude or not informed.    Many employers ask questions that are not lawful to ask.  Most likely they just do not know the difference of what is correct and incorrect to ask and many find interviewing a chore and like to get it over with as quickly as possible, so cut right to the chase.   When this happens one has to be prepared to answer most questions.   If you are asked something personal or sexist, then that is a different situation, and you may choose to walk out.  You be the judge.  As long as the question is not directed at something the potential employee feels is intolerable then it is best to answer.    Even if you don’t get the job, at least you have the experience of a difficult interview and learn how to field these questions better for the next one.   One never knows if you tell the truth with humor, you just might get hired. 

SOME WORDS OF ADVICE FROM BERYL CALLAGHAN:

First, give as little information as possible on a job interview about personal things.  How do you explain a 2-3 year gap in a resume?  If you are not asked, don’t mention it.  If asked, you can mention you had some health problems, but now you are doing great.  A pregnant woman does not have to say she is pregnant when applying for a job.  This is against the law to ask.  So if you are ready to return to work, I am assuming at this point you are feeling well enough to work so just say you are fine, which you are.  You do not have to say anything about what might be down the road, just as a woman does not have to say she will be missing work in 6 months to have a baby.

Do not tell your employer that you have Cystic Fibrosis (or other lung illness), or that you had a lung transplant, etc. as it not mandatory that you say that.    My daughter never told any employers that she had any problems at all and when she had to go to the hospital, she would just say she would be missing a couple of days and would be back as soon as possible.  It always worked for her and she never had any problem getting a job or keeping one when she did miss time.  Everyone is allowed sick time in any job.  Sometimes it has to do with ego as there are people, not many, who feel they have to tell everyone that they have Cystic Fibrosis (or other lung illness), and what they have gone through and expect a pat on the back that they are so brave to go back to work.  Unfortunately most of these people do not get hired.  This is the way employers protect themselves from people who will have absences from their job or waste the employer’s time teaching them the job and then find they will not be there to do it, much of the time. This may be the employers opinion as most do not know much about Cystic Fibrosis (or other lung illness), but as soon as they hear it is a possible fatal illness, then forget it, as far as employment is concerned.

So the main thing to remember is that no one has to tell the employer anything about their health problems, unless they are allergic to the environment, which they should know in advance and therefore would not be applying to work for that firm.  Usually during a job interview the questions that are asked are “What do you think are your best qualities for this job?”  You tell them that you have always been interested in this type of work and you heard they are a great company to work for. If you had previous experience you say the same thing, that you love this type of work and have worked in the field before and hear they area great company to work with. Next they usually ask what qualities you have that you consider being detrimental (something to that effect). You always answer that you cannot think of any qualities you have that would prevent you from doing this job.  Notice you say “qualities”, which does not refer to health.  So you do not lie, but you just leave out what you do not want them to know.  This question is usually asked to find out how much self-confidence people have.  If you tell them any qualities that are not good then they feel they have low self-esteem.

The interviewer will ask questions pertaining to the type of work you are applying for. So some research before going to an interview is worthwhile.  It also helps to practice the interview with a friend in advance and have them ask questions and have your responses memorized so well that they seem natural.  If you have access to a video camera, it is good to do it on camera so you can look at it and watch your body language and listen to your answers.  This is great in helping improve your interview chances.  You can call any company, which you think you may like to work for and ask if there are any jobs available as you hear they are a great company to work for and you very interested in working with them.  Always give the company or employer a compliment.  Usually they will say there are no jobs available at this time.  You then say, “would you mind if I came in and dropped off a resume and had a look at your operation in case there might be a job coming up in the future?”  This is called interviewing the employer.  Many employers like to have a chance to talk about their job or their company and will take ages to tell you about it.  When you ask if you can have a few minutes of their time to see their operation and talk about their job, make sure you keep it no more than 20 minutes, even though most people will keep talking much longer than that, as it is human nature for people to talk about themselves and their work.  If you stay too long then you have not lived up to your word of a few minutes and after you go they then realize they have spent too much time and are behind in their work. As long as you ask each time, before you call, if they mind, then keep on calling as then the employers feel you are interested in them, and if a job does come up, you will be the first person they will think of, as you showed so much interest.

STARTING A NEW JOB
To maximize your first days in your new position, consider the following recommendations.

Expect a period of adjustment.  Be prepared for a period of transition that may or may not be all that comfortable for you. Whatever change you may encounter, recognizing that this transition may be at times a low rather than the high you expected is an important insight.    Remember that it generally takes 3-6 months, sometimes longer, before you are up to full productivity. 

Leave your baggage at the door.  Regardless of your feelings about your former employer, your new co-workers really do not want to hear about any raw deal you believe you got, nor do they want to hear how much better things were there.

Get along with everybody.   “Chemistry,” “interpersonal skills,” “office politics,” – call it whatever you like – the ability to just plain get along with others at all levels of the organization will be prime indicator of job success in your new position.  Start by understanding that, like yourself, your co-workers are going through a transition as well.