Coach Mike

Mike Needs A Kidney


MIKE NEEDS A KIDNEY TRANSPLANT

Mike needs a kidney

New! I had a successful kidney transplant November 1st. Recovery has been rough, but the long-term prognosis is good. Thanks for everyone's support!

Good news 10/30/2012 - my kidney transplant is scheduled for early November. A sincere thanks to everyone who got tested or passed the word along.

New 6/20/12 Urgent - my 6/26 transplant got cancelled because the donor had a medical issue. I'm looking for a last minute replacement. Please contact me at mikefrandsen@hotmail.com if you would like to get tested, or please pass it on. Thanks.

As of late May 2012 I have a kidney donor! I will be part of a paired kidney exchange in New York with my transplant taking place June 26. Thanks to everyone who supported me in my search for a donor.

If anyone is interested in making a tax-deductible donation through the National Foundation for Transplants to go toward non-covered transplant expenses, please see http://patients.transplants.org/mikefrandsen. Some of the non-covered expenses will be: living expenses in New York for two months - I have to live there while I recover and am not allowed to work (the operation could not be done locally). The funds would also go toward any immunosuppressant medications not covered by insurance. These medications are required so the kidney is not rejected, and their total cost can be $4,000 per month, of which only 80% is covered by insurance. Even $10 or $20 donations are greatly appreciated. I just want to get to the point where I'm focusing on health and not finances, at least until I can work again. Thanks!

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New: Click here for Testimonials

I have volunteered or worked with kids with autism and other disabilities for 13 years.

See my kidney videos: Please "Like" my Facebook Page.

I'm looking for someone of blood type O to donate a kidney for a transplant that I'm going to need as soon as possible. I have polycystic kidney disease - stage 5 kidney disease with severe kidney damage. PKD is a genetic disease - my mother had a successful transplant and is doing fine in her late 70s - and my kidney function has been declining for a while.

If you're interested in getting tested, contact me at mikefrandsen@hotmail.com. You have two kidneys and only need one. You only need to spend 1-2 nights in the hospital to save a life. Donors live longer than people who don't donate, because you won't be accepted as a donor unless you're healthy.

With PKD, fluid-filled cysts grow on the kidneys and interfere with kidney function, to the point where the kidneys eventually fail. But transplanted kidneys dont have this problem. Here's a summary of PKD:

Autosomal dominant polycystic kidney disease (ADPKD) is the most frequent life-threatening, hereditary disease. ADPKD is more common than sickle cell anemia, cystic fibrosis, muscular dystrophy, hemophilia, Down's syndrome, and Huntington's disease combined. ADPKD is a multisystemic disorder characterized by the progressive development of renal cysts and marked renal enlargement. Structural and functional renal deterioration occurs in ADPKD patients and is the fourth leading cause of end-stage renal disease (ESRD) in adults.*

If I get a transplant now, I can live a normal life into my 80s with no major problems. However, with every month that goes by that I don't get a transplant, I may have a year taken off my life span because of the amount of time I have spent with a kidney function of less than 10%. Some of the effects, according to surgeons, may be irreversible. I believe that if you help, somehow it may come back to you in some way. Please help. If you do, someday someone may help you when you need it. My life is worth it. I don't know what else to say.

By the way, if anyone else knows of a better suggestion on how to get a kidney please let me know. Most of the videos at the bottom of this page were done in fun and meant to attract attention to the issue, not just for me but for the more than 80,000 people waiting.

A surgeon told me last summer, "People in your stage of CKD can just drop dead one day -- this is a real risk...The way your body responds to those very end-stages of kidney disease, and to the dialysis process itself, is quite profound and cannot be reversed..." and my kidney function is declining.

As of October 2012, my kidney function has fallen to 3 percent and my creatinine has risen to 17.2 mg/dl, meaning that I have about 3 percent of my kidney function remaining (97 percent gone). Most people are transplanted when they have about 8 percent of their kidney function remaining. The higher the creatinine the worse the kidney function, and my creatinine is 17 times higher than normal.

If you are willing to spend one night in the hospital to donate, that kidney could last me 35 years. If not, and I go on dialysis for a long period of time before getting a transplant, it could significantly reduce my lifespan.

There are more than 80,000 people in the U.S. on the national waiting list for a kidney, and more than 12 people die each day waiting.

Dialysis results in an approximately 20 percent chance of death each year. Once somebody goes on dialysis, the chance of a successful transplant goes down and the risk of heart disease goes up.

There is a national waiting list, but there are two problems with it. 1) The average waiting time is five years (I've accrued 3 years of waiting time). 2) Kidneys from the waiting list come from deceased donors. These kidneys, while life saving for many people, on average last considerably shorter than those coming from live donors, and there's also a lower chance of the operation being successful.

Everyone has two kidneys and only needs one, and statistics show that people who donate kidneys live longer than those who don't. This can partly be explained by the fact that people need to be healthy in the first place to donate. The process of getting tested usually involves filling out a questionnaire, getting lab work done locally, and ultimately traveling to the recipient's hospital to get approved. Donors only spend one to two days in the hospital, though the recovery period may last a few weeks. All the expenses are covered by the recipient's insurance. Most transplants are successful, with the recipient living a normal life other than taking lifelong medications to minimize the possibility of the body rejecting the organ.

If you're interested in donating please contact a transplant donor coordinator for any information at 410-502-0705. If you want to donate a kidney to someone else, visit http://www.kidneyregistry.org. You can also contact your local hospital.

kidney function decline

Click here for a graph that shows my kidney function over the last several years. Just below it is a graph showing 2008-2011. The level of serum creatinine in the blood indicates kidney function. My kidney function has been called "dangerously low" and at least one doctor said I should have been on dialysis a while ago. If you look at the graph, you can see that could happen very soon. It's not advisable to wait too much longer than that, because it's best to have the transplant before getting too sick. I'll be updating the graph monthly.

Stages of Chronic Kidney Disease


Stage

Description

GFR
mL/min/1.73m2

1

Slight kidney damage with normal or increased filtration

More than 90

2

Mild decrease in kidney function

60-89

3

Moderate decrease in kidney function

30-59

4

Severe decrease in kidney function

15-29

5

Kidney failure requiring dialysis or transplantation

Less than 15
(D'OH!)


These days, doctors recommend getting a transplant before ever having to go on dialysis, because the transplant results in a much better quality of life than dialysis. The chance of having a successful transplant is extremely high. I am on the waiting list for a kidney but the average waiting time is 5 years and I've only accrued 3 years as of 2011. In addition, a living donor is always preferable.

A little bit about me: For the past five years my job has been providing therapeutic services to kids with autism in the areas of sports, social skills, and academics. See www.coachmike.net for more information. I really like teaching children to learn to read, converse, do math, play sports for the first time, develop a sense of humor, learn to make friends, and make progress in all these areas, all the while having fun. I have other websites too - www.mikefrandsen.net (photography), www.mikefrandsen.org (blog) and www.myredskinsblog.com.

I also write articles for Examiner.com. See my articles on Sports and Autism. I also write for Bleacher Report. Also see my article on wandering and autism in Autism Spectrum Quarterly magazine.

The single life has been great at times, but my dream is to get married and have kids, and I'm still 100% sure that will happen. I know I'll be a great husband and father. I like sports - both playing and watching. I always root for the underdog. I like good music and comedy. I work out and do yoga, and I like traveling.

Career-wise, in the past I spent several years working as a writer for the government. I also worked in radio for the first five years of my career. Sometimes on the air and other times behind the scenes, the highlight of those years was interviewing Michael Jordan. I first started volunteering for kids with autism 13 years ago. Anyway, you can see links to my former employers on the Links page. I put them on just in case having extra links on this site might lead to increased traffic.

If you'd like to consider donating a kidney, or if you have any questions, you can contact me at mikefrandsen@hotmail.com. Or call a transplant donor coordinator with any questions at 410-502-0705.

See http://www.hopkinsmedicine.org/transplant for more information.

Here's a site with pretty good information about donating: Living Donors Online. I'm planning to have the transplant at Johns Hopkins Medical Center, one of the best hospitals in the country, but I'm willing to do it at a hospital closer to your area.

I have no health problems other than PKD, so once I get the new kidney I should be fine. You would be helping someone have a normal life for hopefully another 30 years.

If you want to consider donating a kidney to someone else who may be in greater need, contact the transplant donor coordinator at your local hospital. All of the costs associated with donating a kidney are covered by the recipient's insurance. Obviously donating a kidney would be an amazing gift. Thank you very much.

You can also make a tax-deductible financial donation to any non-covered transplant-related expenses at http://patients.transplants.org/mikefrandsen.

Testimonials

  • "We have a daughter with Autism who is very fond of Mike because she understands he is vested in her success. There are not many therapists with the level of dedication Mike brings each week. In the middle of Washington DC's record snowfall, with 5-foot drifts (remember Snowmageddon), Mike took the metro and climbed over the drifts to be here for her when no-one else was setting foot outside. We need more caregivers like Mike. Our families need him to be able to continue the valuable work he does with these special children. A life-saving kidney would have an impact not only on his life. It would pay dividends to the many children who look forward to their time with him. We want Mike and his work with special needs children to continue for decades to come."

  • "I am the mother of a 38 year old young man with non-verbal autism. My son and our entire family have a strong friendship with Mike even though we have lived mostly out of the US for the last 5 years. Whenever we come back to the US catching up with Mike is one of our highlights.

    When we met Mike he had a promising career at NIH and was volunteering with KEEN (Kids Enjoy Exercise Now) a group that organized sports activities for young people with disabilities. Shortly thereafter Mike became a close friend with my son and spent a considerable amount of time with him outside of KEEN. Mike also decided that he really enjoyed helping people with disabilities especially those with autism much more than being a policy specialist. Deciding to make this his career he went back to school. He got himself a MS in Education from John Hopkins and a Graduate Certificate in Education of Students with Autism also from John Hopkins. That he did this with considerable sacrifice is a testimony to the commitment he made to people like my son.

    Mike is a remarkable human being and it would be a tragic loss to all of us if he is unable to find a donor in time. Please help him."

  • "Mike is a terrific guy--thoughtful, smart, and kind. He has worked with my daughter for over a year on both academic and social skills, and he has helped her improve in both areas. She never tires of him, and each week she eagerly waits by the door for his arrival. We've been so pleased, we've happily referred him to friends! Mike's work is invaluable. A kidney transplant would help Mike continue to flourish in his work with children with special needs."

  • "Mike has been working for my son for 7 years. He is very kind and always very patient. His knowledge and experience is great. He has helped my son make significant improvements in math, reading, and verbal communication. He also introduced my son to team sports, coaching him in soccer for four seasons. Despite his kidney problems, he has kept working with children and went back to school to pursue his goal of a Master's in education at John Hopkins University. In order for Mike to get well and continue working to improve the lives of children with special needs, he needs a kidney transplant."

  • "Mike worked with both of my children and was a very dedicated and unbelievably reliable therapist. In the time he worked with us he never cancelled, even with all his health issues. Mike took the extra effort and time to stay educated about the latest trends in autism and was truly invested in both my childrens success. For that, I am greatful!"

  • "Mike was an outstanding volunteer in the KEEN program, volunteering weekly with young people with disabilities and making a hugely positive impact on our community. His concern for kids with disabilities was impressive, and we would all benefit from his continued ability to enhance the lives of people in our community. I hope he will be able to swiftly find a kidney."

  • "Mike Frandsen has worked with our son, who has special needs, for eleven years. Mike is an incredibly gifted teacher, with a natural talent for getting through to even the most difficult students. He is creative, and treats every child as an individual, working with how that child learns. He is patient, kind and understanding, and we have been so fortunate to have him work with our son.
    I have seen Mike work with many children and young adults with special needs, at Kids Enjoy Exercise Now (KEEN) and with children of many of our friends, both professionally and as a volunteer. He is a truly gifted teacher with a strong, professional work ethic.

    But Mike needs a kidney. If you or anyone you know would be interested in becoming a kidney donor, please contact him."

  • "Mike has been facilitating weekly playdates for my son and his friend for the past two years. Thanks to Mike's playfulness and creativity, these two children with special needs play in their own pretend band, put on puppet shows and act out the books they read. Their friendship has been greatly enriched because of Mike, and a transplant would allow Mike to continue to enrich the life of my child and many others like him."

  • "Mike Frandsen has developed a special relationship with our son, now 15, who has is in the "middle" of the autistic spectrum. Mike began working with him five years ago, to help him make better use of his leisure time. Our son likes people who are calm but focused, and Mike's approach was perfect with him. Their relationship has developed into something that is essential to teenage boys: mutual physical activity. Our son isn't good at team sports, but he loves swimming. Mike takes him swimming every Wednesday afternoon, after which they have a snack together and "hang out." This relationship is very important to our son on two levels: (1) enjoyable physical activity, and (2) bonding with an adult in a meaningful way. Mike is very sensitive to our son's unique needs, and he is incredibly dependable. This certainty in our son's life is essential. We are all hoping that Mike receives a new kidney as soon as possible, for we know that Mike is very important not only to his life, but to the lives of the many of children with special needs that he currently is helping and certainly will help in the future."

  • "Mike has been working with my eight year old son for about a year now. My son has cerebral palsy, as well as speech and learning issues, and finds it hard to interact with peers and make friends. Mike facilitates play dates every Monday afternoon. My son looks forward with great anticipation to these sessions. With Mike, he and his friend put on plays (which brings together the fun of performance with work on reading skills), listen to music, play with puppets, take turns at board games, read, play catch, and engage in a wide variety of creative activities. Mike is patient, caring, focused, and a lot of fun. People have come up to me on the playground after witnessing Mike in action, in awe of his ability to bring out the best in my child.

    My husband and I have grown to depend on Monday afternoons with Mike, knowing that our son is productively engaged, learning new skills, learning to how to be a friend. This is an invaluable lesson, and it takes time and remarkable patience to teach. We are so grateful to Mike for all his hard work with our son.

    Our family (and the many other he works with) need Mike to be able to continue the valuable work he does with kids with a range of disabilities."

  • "I am writing on behalf of Michael Frandsen. Mr. Frandsen served as a substitute assistant teacher and job coach at Ivymount School from 2006 to 2008. By way of background, lvymount School serves students, ages 4 - 21, with multiple disabilities.

    Mr. Frandsen worked with students of all ages, many of whom have Autism Spectrum disorders. He showed his versatility by working in classrooms with students as young as five years old as well as students up to age 21.

    Working successfully with this population of students requires a keen understanding of the disabilities and knowledge about what accommodations and teaching methodologies contribute to their learning. Mr. Frandsen worked at Ivymount fairly consistently over a year and a half, and subbed in 16 different classrooms in the lower, middle, upper, and post-high schools.

    Mr. Frandsen demonstrated a keen understanding of the students' challenges, was very effective in providing the necessary supports, and displayed a strong commitment to the job. These skills, coupled with the ability to engage and appropriately challenge the students to meet their goals, made him very effective."
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Thanks for reading and feel free to make any comments.

*Developments in the management of autosomal dominant polycystic kidney disease. by: A Masoumi, B Reed-Gitom er, C Kelleher, MR Bekheirnia, RW Schrier
Therapeutics and clinical risk management, Vol. 4, No. 2. (April 2008), pp. 393-407.