A Few Dollars Away From a Longer Life For Gene
(This page was created by Will Jensen, father of Gene, Aaron and Lisa Jensen. )
Gene needs a kidney transplant. Aaron and Lisa are willing to be 'living donors'. Aaron is 1st in line and Lisa is his backup.
Gene's kidneys failed, but were restored to 70% function in 2008. In 2013 the kidneys failed again after an accident. The kidney function was now 7%. He was started on dialysis three days per week and placed on the kidney transplant wait-list.
He slowly moved up the list. He has been called to the hospital to 'stand by' three times: July 2016, September 2017 and January 2018. He was rejected due to a tooth infection; then a bad donated kidney and recently for having two other patients score higher than him on the daily list.
He has had other complications. His gall bladder was removed in 2016. He had all of his teeth removed due to the effects of dialysis taking calcium from his body; and recently his dialysis 'fistula' has developed a serious blood clot about 1/2 inch in diameter and 9 inches long in an artery and a vein.
We had his costs all covered for a deceased donor kidney. But, now a living donor seems to be the best option for Gene. A live donor kidney from a sibling would be best for planning his operation; fastest to recover from; and, likely to provide the longer life expectancy. Costs of the live donor are NOT fully covered by Gene's insurance, nor the government programs. Aaron and/or Lisa must pay some of the costs and lose income for up to 2 months....
We are asking your help to close the gap in what family have already contributed and the total needed to pay for Aaron or Lisa to give a kidney to Gene. We have carefully estimated the needs as follows:
1. $2,000 for immediate removal of an infected tooth and roots for Aaron so he can heal before the planned operation.
2. $2,100 for travel between Wisconsin (Aaron/Lisa) and Missouri (Gene); motel lodging for Aaron/Lisa for up to two weeks; and,
3. $6,000 to help Aaron meet his monthly obligations for two months while he is out of work.
Any left over amounts will be donated to the University of Missouri, University Hospital, Transplant Center in Columbia, MO.
THANK YOU, for what you may be able to donate.
Even if you cannot donate, would you please 'Share' this with your friends on FaceBook or other social media with a link to this page?
If you need all of the details then here's the Looooooonger Story:
Genes’ “I’m OK” Period
Gene had been driving 18-wheelers since 1995. In summer of 2008 he stopped for a meal at a truck stop. He climbed down from his big rig and awoke hours later in a hospital with a dialysis machine connected to his arm. He had suffered acute renal failure. His kidneys had restarted but were working at 70% of normal capacity. He spent days in the hospital. His employer dropped the lease on his truck, terminated him and stopped his health insurance. He went bankrupt. His prognosis was a continual decline in kidney function until he could qualify for a transplant, if death did not claim him first.
Gene figured, “Heck, 70% is still ‘OK’. I should be able to get along just fine.” And he did get along ‘OK’, for a while. In 2009, he got a job in the factory of a major earth-moving equipment manufacturer near his home in Missouri. He has health insurance with them and he is glad for the way the company has accommodated his work restrictions. For the next four years, life went ‘OK’.
GENES’ “Almost ok” PERIOD:
On the way home from work on a cold morning in January 2013, Genes’ pickup took a mind to do a little figure skating on an ice-covered backroad at an “S” turn. The pickup turned ‘belly up’ in the ditch. Gene lay unconscious on the ceiling until a farmer happened along later in the morning. Gene eventually got to the hospital where he was hooked up to a dialysis machine. His kidneys had shut down again and were now functioning at about 7% of normal capacity.
On April 29th 2013, Gene started a regimen of dialysis. He drives one hour to the dialysis center on his way to work every Monday, Wednesday and Friday. He is hooked up to the dialysis machine for three and a half hours and then continues on to work. He still works six days a week at the same job. He now says, “I am more or less, kinda, almost, pretty much ‘ok’ on most days”. The most rest he gets is when he’s in the bed at the dialysis center.
In mid-2013, the docs estimated his kidney function had leveled out at about 5% functionality and that he could live for some time on the three times a week routine at the dialysis center. They put him on the Wait-List for a kidney transplant. The employers’ insurance would cover most of the costs and what wasn’t would be paid by the Federal program.
At age 45, he felt ‘ok’ and thought it would not take too much longer before he’d get that operation. There were just a few A- people on the Wait-List. Over the years, lots of people have planned to donate their organs upon death. It’s a routine operation. It was wonderful to think that ‘Any day now a kidney with his name on it, would come along.’ That was 2013.
FALSE STARTS AND COMPLICATIONS:
For three years he waited without much progress up the list. Genes wife, Shelly, was diagnosed with Multiple Sclerosis. In June 2016 Genes’ gall bladder had to be removed.
July 19th 2016, Gene got his 1st call to standby for transplant. His pre-op blood tests showed problems from infection in his teeth and gums. He was rejected from the operation and the donated kidneys went to other people. Gene was now at the top of the list. We were ecstatic thinking it really could be any day now. In August Gene had all of his remaining teeth pulled to eliminate related infection risks. We all waited………
September 12th 2017, Gene got his 2nd call to standby for transplant. He drove to Columbia, was approved for pre-op preparation and was waiting to undergo anesthesia. Twenty minutes before the transplant was scheduled to start, the laboratory declared that the donor kidney had damaged veins and was not suitable for Gene. Gene went home, severely disheartened.
We have learned there was a change to the scoring system to determine a patients’ position on the Wait-List. Age, overall physical condition and blood type can change your position on the Wait-List dramatically and a new person added to the list can quickly ascend to the top. Gene was not #1 anymore; that position is updated from week to week.
January 20th 2018, Gene got his 3rd call to standby. He raced there only to learn the kidneys went to other patients who ‘scored’ higher on the list that same morning. Gene went home again. But he takes comfort in knowing he is #1 on the list, for now.
It is almost five years since Gene was put on the Wait-List. The average patient is on the list for 4.3 years. On February 5th, Genes’ kidneys were evaluated during his routine dialysis and are now at 3% of normal capacity.
Some Brief Statistics:
A 2013 article in Kaiser Health News gave these stats:
1. Of the people on the Wait-List, 64% were over age 50.
2. More than 40% of those people will die before a transplant can occur.
3. The average wait from day of placement on the list till transplant is 4.3 years for those age 50-64.
At the University Hospital in Columbia Missouri:
1. The average wait time is about 28 months.
2. There are about 110 people on the Wait-List.
3. About 50% get kidneys from deceased donors.
4. About 5% get kidneys from living donors, most-often from a relative.
5. About 45% die before a donor can be found or are disqualified due to other chronic illnesses and complications.
A NEW URGENCY:
Dialysis requires installing a port (called a fistula) into a vein and an artery and using that port three times per week. Fistulas require monitoring for infection and clotting. During his February 5th dialysis, the doctors did an ultrasound to check the condition of the fistula. Here’s the photo of his fistula at that time:
February 7th photo of the current Fistula:
The fistula in Genes’ left arm is swollen and looks ‘bad’, but this is ‘normal’. The swollen size of the fistula is about 10” long by 2” in diameter. What is bad is that a blood clot formed in the artery and vein used for the fistula. The clot is about a 1/2 inch in diameter and 9 inches long.
February 8th photo of the current Fistula:
Above his current fistula, are two smaller lumps nearer to the shoulder, where two blockages ballooned last summer in the previous fistula.
Gene will have another UltraSound and an Angiogram on February 13th to determine how to deal with the huge clot. A smaller clot in 2016 was dissolved with blood thinners. The new clot is much bigger and may require surgery to remove it. At minimum that could delay a transplant while he heals. And, the fistula will have to be reinserted in the other arm or shoulder. The worst case is death from a piece of the clot blocking a vein or artery in his brain, heart or lungs.
TURNING TO A LIVING DONOR OPTION:
Kidney donation from a deceased person is preferred since it means no one has to ‘debilitate’ him/herself to help Gene. It also meant that we had Genes’ total costs covered by insurance and grants. But chances for the deceased donor kidney option are too uncertain given Genes’ current situation.
Our concerns that Gene’s ‘time’ may ‘run out’ before a deceased donor kidney is found have increased. The fistula problem, the declining kidney function, Gene’s age (he’ll turn 50 in May) and the fact that he could die from other complications such as infection, pneumonia, and general debilitation are the highest risk. He may become disqualified from the Wait-List from other complications at any time. We decided to review all possible donors within our family for a living donor.
A "Rogues' Gallery" Photo at our Wisconsin Reunion in 2012:
Left to Right: Lisa, Aaron, Bill (Genes' twin), Gene, Crystyna, Will (aka 'Dad'), Kate and Phil. Susan and Vasili were not present.
Father Will and all of Genes’ five blood siblings are A- blood type, and have discussed donating a kidney. Some of us are not considered viable at the moment due to diabetes, high blood pressure, overweight, and/or age. Gene’s half-brother, Aaron, has volunteered to be ‘first in line’ and his two sisters are backups for Aaron. Aaron and Lisa are planning to undergo testing in March to see if either one is suitable. Both could be disqualified by the blood lab results.
Switching to a live donor for the kidney means additional costs for the donor. These were not previously anticipated. The costs start with at least two full weeks of lost work for the in-hospital lab testing, psychological eval, and approvals followed by the transplant operation and the 10 to14 days of the ‘initial’ recovery period.
The donor should not work at all if the job requires heavy lifting and/or aggressive physical movement for at least two months. If the work is light duty with no lifting over 10 pounds then a month might be enough for the major recovery period. This means between six to ten weeks of lost wages, missed payments for mortgage, utilities, etc..
The donor is expected to pay up front for travel, lodging, food and miscellaneous expenses. Reimbursement after presenting receipts could take up to six weeks depending upon the insurance company processes. The donor needs health insurance that can pay for followup health exams at the 2nd, 6th and 12th months after the operation.
The donor is responsible to pay for any medical or dental treatments to remove disqualifying medical conditions before the operation. There are risks that the donor has to understand and accept: disability from being on one kidney for the rest of their life; potential chronic kidney disease; failure of their one kidney; needing a transplant themselves; loss of work; inability to qualify for future jobs; inability to obtain insurance for health, disability or life; and may develop many side effects of post-operative conditions; and death does occur amongst donors for various reasons related to the operation.
Finally, there is a risk that the donated kidney might prove to be NOT useful to the recipient. The protocol is to transplant the donated kidney to another person on the Wait-List. Now that’s a bummer!
LIVING DONOR AARON NEEDS HELP:
Aaron is 40, married, and has five sons whose ages are 20, 16, 7, 5, and 2. His wife has an apparent congenital heart defect and may require long-term treatment. One son was born with only one kidney, but has other family members with A- blood type who could be a donor for him, if needed. Aaron lives in western Wisconsin about 600 miles away from Gene in Missouri.
Aaron lost his job in September 2017. He used up his 401K and savings before getting hired again on January 10th at a lower salary. The employer has a 90-day probation period that ends after March 12th to retain his job and be eligible for employer-funded health insurance. Aaron has NO health or dental coverage now. Aaron has talked with his supervisor about a two week leave of absence (LoA). He got no definite approval, but is hopeful since the insurance would be helpful after the transplant operation to cover his needs for followup care. Aaron will go ahead even without the LoA.
Aaron understands the donation process and is aware of the possible outcomes, both positive and negative. He knows his donated kidney, for lack of complete acceptance might be given to another person. He knows he will be without a ‘spare’ kidney for himself or his children. He knows he may have complications from the transplant surgery and possible other illnesses in the future. He accepts the possibility of an early death. He is committed.
Aaron plans to travel to Missouri in mid-March for the medical labs, the psyche evaluation and Transplant Board Donor approval. If the operation is a ‘go’, then he’ll stay there for the operation and early post-operative recovery. He may need up to two-months for full recovery - longer if things go ‘sideways’ and will do that at home in Wisconsin.
MONEY NEEDS & PRIORITIES:
We have done everything possible to reduce the money needed. This is the ‘bottom line’. In the near-term (three months) we are ‘tapped out’. I tried to get loans against our home but my eyes crossed when I heard 25.99% interest rate and then a solid “NO!” because I’m 72 years old. Aaron will be the primary beneficiary of donations through this campaign. Here’s the breakdown of our estimate of needs:
1. $ 2,000 is needed immediately for a dentist to remove a broken tooth and roots so his jaw can heal before he can go for the blood lab tests in March.
2. $ 2,100 for travel and lodging costs during the first two days of the pre-op testing and the two weeks of the post-op processes. This will cover the round trip travel by car between Wisconsin and Missouri; food and motel during travel and the two-week stay. Gene’s insurance will reimburse some of the costs if they accept the receipts.
3. $ 6,000 for lost wages and monthly expenses. Beyond these two months of lost wages there is a chance that Aaron will permanently lose his new job by taking time off to donate a kidney.
We don't want to break up this 'set'
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