Last modified: 11 May 2000
Join TRIO - Awareness, Support, Education, Advocacy
Thursday, September 28, 1995 7:00 p.m.
Fairfax Hospital Fairfax Hospital Cafetorium West (next to
cafeteria) 3
300 Gallows Road, Falls Church, VA 22046
Share the experiences -- Socialize
Refreshments will be
Available
Reminder: Those who particpated in the "best candid shot of the day" contest at the July picnic, please bring your photos to the September 28th General Meeting. In order to win your free dinner in November, your photos must be presented at this meeting.
Eight years ago, I was diagnosed with chronic renal failure (kidney disease). The news of my condition was overwhelming and most devastating because I had no understanding or knowledge of the functions of the kidneys. I was told that the only thing that could sustain my life was dialysis. Again, I had no idea what dialysis was or what it would do to me or for me. My only thought was that my life was coming to an end. I asked myself, "What in the world had I done to deserve this?" "Why me?" There was too much to understand at one time; I just did not know what to do or how I would go on with life. All of this was very new to me and extremely frightening. I knew no one that had experienced this type of thing, so I felt that I had no place to turn.
Although I was diagnosed with kidney disease in April 1987, I did not actually need dialysis until July 1987. This too was frightening because I had the opportunity to preview a dialysis unit prior to my actual need, and the thought of having my blood removed from my body and entered into a machine to be cleansed truly scared me. It was very hard to come to grips with this thing called dialysis and kidney disease. My feelings changed; I no longer felt that I was normal. My life had changed and I believed that I would die. I was in total denial and none of this was acceptable so, needless to say, I did not fare too well on dialysis. For 17 months I was on dialysis, in and out of the hospital, and it appeared that there was no light at the end of the tunnel.
My doctor was aware of the mental and emotional changes that I was experiencing and he felt that I was a candidate for transplantation. Now, there was another issue that I had to deal with, as I knew nothing about transplantation. I was told there were a number of ways to receive a transplant. They were: living related (a member of my family could donate); living donor (from a friend); and even from someone that had passed away (cadaveric). Now, how was this going to be achieved? I had many questions, but no solutions...
I first started with my five siblings but there was not a good match. My hopes were diminishing. So I started asking strangers. All I got were negative responses. Then, I thought about my only child. Why not? I had given him life. This would be the perfect way that he could show me that he appreciated the life that I had given him. However, after discussing my desperate situation with his father, he was totally against the idea. I felt betrayed and disappointed. Why would he not want our son to do this for me? At that time, he could not have foreseen the future nor did he have ESP. So I continued on dialysis. In October 1988, I received my first transplant; but after eight days I went into chronic rejection, and I was again on dialysis for 17 months.
After much prayer, acceptance, compliance, and belief in God, I finally received my second transplant in March 1990. Through someone's tragedy, I received the Gift of Life.
The irony of my story is that my son's father was right in not wanting him to be a donor because earlier this year, my only son was a victim of a gun-shooting. He was shot three times and has been hospitalized for over five months and, as a result, he lost his left kidney. If my son had become a donor for me, today he wouldn't be alive.
I felt good and I felt bad about this. The good feeling was that he survived the shooting; and the bad feeling was that I could only think about my need. I thank God for my many blessings!
[Debbie is one of the Chapter's Vice Presidents. Her address and telephone number in Albuquerque (while she is with her son during his recuperation) is: 3440 Ross Avenue, S.E. - #C, Albuquerque, NM 87106 505-266-4309.]
On August 15 at the Italian Cafe in Falls Church, Virginia, the Chapter held its kick-off dinner to allow those that work during the day to socialize with our members and friends. With great pleasure, we welcomed our newest recipients: Eric Petersen, a six-week liver recipient from Fairfax, and his spouse Elaine; and Jim Weaver, a seven-week heart recipient from Johns Hopkins, and his spouse Mary. Al Leon, who received a heart transplant in Pittsburgh over eight and a half years ago, had the honor of being the longest time out since transplant.
Transplant recipients from five transplant centers attended and all solid organs (except pancreas) were represented. Greg Komara of the Washington Regional Transplant Consortium stopped by for the pre-dinner socializing. Everyone had such an enjoyable time, it was proposed that a dinner be held in Maryland.
The next dinner is scheduled on Tuesday, September 19, at the Far East Restaurant -- 5055 Nicholson Lane -- Rockville, MD, located a few blocks past White Flint Mall. Call the TRIO number: 703-920-8746 to RSVP and for directions.
Most of the key Republicans leading the charge to enact health reforms have now placed their proposals on the table. President Clinton, stung by the 1994 health reform debates and reeling from GOP dominance in Congress and demands from both Republicans and Democrats to balance the federal budget, conceded he overreached last year and has now proposed the "meaningful insurance reforms" he called for in his January address to the nation. The Administration's limited health reform package is part of the President's counterproposal to the Republicans' budget measure.
Although an August 2 markup of a health reform proposal (S.1028) has been tentatively scheduled by the Senate labor panel, no proposal at this time clearly has majority support in Congress and the blessing from the White House, despite general consensus that some issues are ripe for resolution this year.
COBRA expansion proposals initially did not appear likely candidates for serious consideration. In fact, COBRA repeal was anticipated under last year's debates on comprehensive health care system reforms. In recent weeks, however, members of Congress have begun rethinking the issue, in part because of the limited scope of reforms possible this year given the federal budget focus.
Various bills to extend or expand COBRA requirements include H.R. 1604 by Rep. Nancy Johnson (R-CT), S-715 by Sen. Alphonse D'Amato (R-NY), and S.121 by Sen Phil Gramm (R-TX). Their proposals variously would extend COBRA require- ments to employers with two or more employees; modify the definition of "qualified beneficiary"; expand the continuation coverage period to 36 months for all qualifying events; establish new, lower- cost/high- deductible optional plans -- in addition to packages offered to active employees -- that employers must offer COBRA- eligible individuals, or modify the type of coverage an electing individual must have (i.e., substantially similar to or better than the former employer's COBRA coverage) before an employer's obligation to provide continuation coverage terminates.
Dole's draft proposal is silent on the issue but his staff has been crafting COBRA expansion language for possible inclusion in the measure when it is introduced. Kassebaum's S.1028 would amend COBRA to allow certain disabled individuals to elect continuous cover- rage for 18 months, instead of the current 11 months. Plus, Johnson's office has indicated that "technical" changes to COBRA will be introduced shortly. If COBRA's health care continuation requirements are expanded, employees that leave work because they need a transplant will be able to continue their coverage at group rates for longer period.
The MSA proposal that has received the most attention is H.R. 1818, introduced June 13 by Rep. Bill Archer (R-TX). Under H.R. 1818, all individuals covered only by a catastrophic health plan may maintain an MSA. The bill defines a catastrophic plan as having a deductible amount of at least $1,800 (or $3,600 for coverage of more than one individual). Contributions to the account would be tax deductible if made by the individual, and excludable from an employee's income if made by the employer. An individual would be prohibited from making deductible contributions if his or her employer contributes to the MSA.
In general, any amount may be contributed annually to an MSA but the amount that may be deductible is the lesser of (a) the deductible under the catastrophic health plan or (b) $2,500 if the catastrophic health plan only provides individual coverage (or $5,000 for spouse/dependent coverage). Amounts withdrawn from an MSA would be excludable from income if used for qualified medical expenses; income earned on amounts held in an MSA would be includible in current income. Funds remaining in an individual's MSA at the end of the year would be available for medical expenses in the following year.
Other bills that contain MSA components include Fawell's H.R. 996 (companion legislation to his H.R. 995), which allows for the establishment of MSAs in the individual insurance market; Kassebaum's S.1028, which allows health maintenance organizations to offer individuals with MSAs a plan with deductibles; Dole's draft proposal, which calls for a lower catastrophic plan deductible and less generous tax deductions than Archer's H.R. 1818; and the House-approved tax bill (H,.R. 1215), which allows individuals to establish "American Dream Savings" accounts from which medical expenses may be paid.
MSAs have some appeal: they are easy to communicate, they are portable, they preserve individual choice, and they can encourage individual awareness of health care costs.
Fawell's H.R. 995 would establish limits on preexisting condition exclusions in general and eliminate preexisting condition exclusions and waiting periods for employees who maintain continuous coverage while changing jobs. Under H.R. 995, plans covering more than 50 workers could not impose more than a 3-months-prior/6-months-after limitation on preexisting conditions; a 6/12 limit would apply for smaller plans. In addition, any waiting period must run concurrently with the preexisting condition exclusion. For workers who change jobs, the bill provides that for each month of continuous coverage under a prior plan, any preexisting condition exclusion under a successor employer-sponsored plan must be reduced by one month. An individual may have a gap in actual coverage of up to three months and still be considered to be in a period of continuous coverage.
H.R. 1610, introduced May 11 by Rep. Bill Thomas (R-CA) and cosponsored by all members of the House Ways and Means Committee's Subcommittee on Health, similarly credits coverage under a prior group health plan against any preexisting condition limitation. Whereas the Fawell bill achieves portability through ERISA revisions, the Thomas proposal amends the Internal Revenue Code, specifically the portions generally referred to as the COBRA continuation coverage requirements. The Thomas bill would credit coverage provided by an employee's former group health plan against coverage under the new employer's health plan so that the length of any preexisting condition exclusions under the new plan may be reduced.
Kassebaum's S.1028 and Jeffords' S.1062 also credit individual who have prior coverage against any preexisting condition exclusion under a new health plan. The bills restrict such exclusions by prohibiting insurers and employers from limiting or denying coverage under group health plans for more than 12 months for a medical condition that was diagnosed or treated during the previous six months. Limits on preexisting condition exclusions are also contemplated in Dole's draft proposal.
Another theme running throughout all of this year's major proposals is portability, the ability of an individual to maintain health care coverage irrespective of changes in his or her job situation. The Fawell, Kassebaum, Archer, Thomas, and Dole proposals all attempt to address this issue but at this time there is no consensus on the best means to achieve it.
Broader reforms, COBRA expansions, and MSAs -- have varying degrees of support as well as opposition. As Congress continues on its path to rectify the federal budget problems, it could turn to any of the bills or choose to combine specific elements to address health reform. Because foremost on legislators' minds will be the cost to the federal government of enacting reforms, the potential for significant cost shifting to the private sector will remain.
The enactment of many of the leading types of reforms will likely have significant, although differing, effects for employed transplant candidates and recipients re-entering the workforce. Concerned individuals should start evaluating how their ability to obtain health coverage may be affected and communicate any of their concerns to members of Congress.
(Note: Gerry Cole will provide an update on the various bills before Congress in future Chapter Newsletters.)
Packets of 6 cards were purchased by:
Nancy and Evans Herman; Louis Miner; Brian and Dora Hartford
Cards were sent by:
Al and Jane Leon -- speedy recovery to Susan Leon; in memory of Michael Chirigos, Jr.
Deena LeVine -- in honor of Bernard Gelb's 70th birthday
Brian and Dora Hartford -- in memory of Rick Shimberg's wife, Shirley Kushner; in memory of Frank Embert
Tribute cards are available by calling Jane Leon at 703-920-8746.
In 90 percent of all liver transplants, the patient (recipient) will have a T-tube after transplant. What has taken place is reconstruction of the bile duct when the new liver is placed. What is bile? Bile is an alkaline, bitter-tasting, golden-brown fluid that contains bile salts, cholesterol, bilirubin, electrolytes and water and that aids digestion. Bile salts are useful in the absorption of fats in the intestine.
If the recipient's bile duct is normal and free of disease, a procedure called choledocho-chedochostomy with a T-tube is done. This simply means that the donor's bile duct is reconstructed to the recipient's bile duct over a T-tube, and this T-tube presents through a would in the abdomen. The reasons for this are: (1) the T-tube prevents possible narrowing (strictures) of the bile duct; (2) prevention of kinks in the newly created bile duct; (3) enabling healthcare workers to assess bile formation; and (4) easy access to the bile duct for radiological examinations when the bilirubin or biliary enzymes are elevated post-transplant.
Immediately after transplant, the T-tube is connected to a bag. The staff frequently examines the color and consistency of the bile and will take samples of the bile for research purpose. On the fifth or sixth postoperative day, the T-tube is clamped. Clamping the T-tube allows the bile to circulate in the intestine and aids in the absorption of Cyclosporin. The T-tube is covered by a clear dressing that protects the rest of the rubber tubing that remains. The patient will be taught how to clean this site and change the dressing. It is very important to keep this dressing dry to prevent infections. After approximately three months, the T-tube will be removed.
This will be done in the transplant clinic as an out- patient. Before the T-tube is removed, the patient will need to have an X-ray called, T-tube cholangiogram. This consists of injecting dye into the T-tube and taking Xrays. This is done to see if there are any biliary leaks or strictures. If there are none, the T-tube is removed.
The actual removal of the T-tube causes little or no discomfort. After removal of the T-tube, the patient is required to lie flat for 30 minutes. If no discomfort occurs, the patient can sit up, walk around and, ultimately, be discharged. If a leak develops, however, discomfort is experienced within minutes. Often, a narcotic is needed to relieve the discomfort. The best treatment at this time is to remain quiet and lie flat until the discomfort is relieved. Once the pain clears, the patient is discharged on an antibiotic and seen again in two to four weeks. In less that 5 percent of cases, the patient needs to be admitted for further assessment.
In the 10 percent of cases that do not receive a T-tube, the procedure is called choledocho-jejunostomy (Roux-en-Y). If the recipient's bile duct is diseased or the duct is too small to allow for insertion of a T-tube, the donor's bile duct is attached to the loop of the jejunum (bowel) directly. With this procedure, there is no direct means of performing radiological examination of the bile duct.
The transplant surgeon decides at the time of surgery of what type of biliary reconstruction to do. If it is the external T-tube, a full explanation of how to care for the T-tube will be given. The patient will also receive further instructions concerning eventual removal.
Judith Piccinin, kidney, Washington Hospital Center, 1993
Audrey Kramer, liver, Johns Hopkins Hospital, 1991
If we missed your anniversary or to be sure we have your anniversary, please contact Claude Brady at 703-534-7029.
The Nation's Capital Area Chapter
Transplant Recipients International Organization
P.O. Box 7633, Arlington, VA 22207
(703) 920-TRIO