Coach Mike

Mike Needs A Kidney


 

MIKE NEEDS A KIDNEY TRANSPLANT

See Video: Mike Jams with the Dirtbags

I'm looking for someone to donate a kidney for a transplant that I'm going to need at some point, relatively soon. 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 my kidney function has been declining for a while. With PKD, fluid-filled cysts grow on the kidneys and interfere with kidney function, to the point where the kidneys eventually fail. 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.*

I have been evaluated for a kidney transplant and have been determined to be an excellent candidate. My symptoms are actually not that bad right now - I have some minor fatigue, I'm slightly more susceptible to nausea than I used to be, and my appetite isn't as big as it used to be although I'm at my normal weight of 215 pounds. I'm doing very well. There's no need to worry about me or to feel sorry for me. I definitely don't feel sorry for myself. I still do everything that I normally do. However, my symptoms are expected to get worse, and I need to line up a donor. One good thing is that of all the problems that can cause kidney failure, PKD isn't as bad as some of the others. Other than PKD, I'm very healthy.

There are about 80,000 people in the U.S. on the national waiting list for a kidney, and more than 10 people die each day waiting. If you want to donate a kidney to someone else, a couple of great sites are http://www.matchingdonors.com and 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 2008-2009. The level of serum creatinine in the blood indicates kidney function. My creatinine is 7.3 mg/dl, which equates to a glomerular filtration rate (GFR) of about 8.8, meaning that I have about 8.8 percent of my kidney function remaining. I will probably need the transplant when I have about 8 percent of my kidney function left. If you look at the graph, you can see that may happen relatively 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 18 months as of November 2009. In addition, a living donor is always preferable.

A little bit about me:

For the past three 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.

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..(now this is starting to sound like a bad personal ad..All I need now is "I like hiking" and "I'm just as happy going out as staying in.").

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 more than 10 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.

The first criterion to be a donor is that you have to be the same blood type as me, which is O.

UPDATE - As a prospective donor, you do NOT have to have the same blood type as me if you are willing to participate in a paired exchange program. A paired exchange consists of two donor/recipient pairs whose blood types are not compatible with each other. In Pair 1, Donor 1 is not compatible with Recipient 1. In Pair 2, Donor 2 is not compatible with Recipient 2. However, Donor 1 is compatible with Recipient 2 and Donor 2 is compatible with Recipient 1. Surgery for both pairs is done simultaneously.

In fact, a paired donor exchange, coordinated by the hospital's incompatible kidney program, might be the best option. This is because rather than having to accept whatever compatible kidney is available regardless of how close of a match it is (not that I or anybody can afford to be too choosy), with a paired donor exchange, there is a pool of available unmatched donor/recipient pairs.

Using the example above, if I am Recipient 1, I get a kidney from Donor 2 (you), while Donor 1 donates to Recipient 2. Because there would likely be multiple pairs in a pool, recipients get matched with the closest matches possible from the donor pool, which are likely to be closer matches than for just one random person of the same blood type. This is because the recipients are getting the closest matches from an available pool. This could be especially true for me as I have been told that I have an uncommon set of 6 antigens. The more antigens that match, the better chance of a successful transplant and the better chance of the kidney lasting longer.

So, the bottom line is that though it is more complicated, you do not have to be the same blood type to donate if you participate in a paired exchange program.

If you'd like to consider donating a kidney, or if you have any questions, you can contact me at mikefrandsen@hotmail.com or 240-643-1900. Or call a transplant donor coordinator with any questions at 1-888-304-5069, then option 4 and then option 2. Here's a description of what happens when you get tested to be a donor: Kidney Donor Workup, and 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.

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 50 years.

If you want to consider donating a kidney to someone else who may be in greater need, check out www.matchingdonors.com or contact the transplant donor coordinator at your local hospital. I also have a profile at matchingdonors.com and you can contact me through that site too. All of the costs associated with donating a kidney are covered by the recipient's insurance. Obviously donating would be an amazing gift.

Please see my videos:


Also, see books for sale on my Amazon.com site:

I just want to clarify - I don't want to alarm anybody - when you hear "end stage renal disease" and "8.8 percent kidney function," it sounds pretty bad. It's not great, but in fact I'm very confident I'll get a donor, there's a 90+% chance that a transplant would be very successful and last for a very long time, and if it wasn't successful, I'd simply go on dialysis for a while until I got another transplant.

Please see the Links and Photo Gallery pages too.

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.