The Latest Happenings

Where to go for updates!

Rachel Massie — Fri, 05 Aug 2011 21:52:12 GMT

Hi everyone, thanks for stopping by Matt's site. For the latest news on his journey, check out the "About Matt" page on the website.

May 2010

Rachel Massie — Mon, 24 May 2010 15:47:00 GMT

Officer Chad Nagorski helped Matt get in contact with Renee Passal from WDIO, one of Duluth's local television stations. She interviewed Matt and aired his story on the 6 and 10 o'clock news on Friday, May 21st. The story turned out very nice, here is the link if you'd like to watch!
http://www.wdio.com/article/stories/s1571172.shtml
Saturday, May 22nd we participated in a Kidney Walk in Duluth sponsored by the National Kidney Foundation. Our team, Operation Kidney, had a great turn out and looked pretty sharp in our new T-shirts. We spent a very nice morning by the shore of Lake Superior and raised funds for a very worthy cause. Check out our pictures posted on the website's photo page. Also, there are more T-shirts available if you'd like to purchase one!

Thank you for all of your support and donations for this event and to Operation Kidney. The way people have reached out to us is amazing and has touched our hearts more than you know.

April 2010

Rachel Massie — Tue, 20 Apr 2010 20:09:03 GMT

For anyone interested in joining or donating to our Operation Kidney team, we are participating in a fundraiser at the end of May. We'll have our t-shirts printed by then and it will be a great way to get out in the community and raise money for a very worthy organization. Check out the link for below to see the details and join our team!

National Kidney Foundation Kidney Walk
Saturday, May 22, 2010
Duluth, MN
http://donate.kidney.org/site/PageServer
Team Name: Operation Kidney

March 2010

Rachel Massie — Tue, 20 Apr 2010 19:51:00 GMT

At this point, we do not know of any other living donors that have contacted the University of MN with interest in donating to Matt. Rachel decides to email the Alliance for Paired Donation in Ohio for information. Enough waiting around for something to work out, we have to start pursing more options. Here is an excerpt of the information from the "How You Can Help" page of the Operation Kidney website:

PAIRED DONATION

Paired donation is a newer trend in the transplant community that is not as often explored simply because it is more difficult to coordinate. Here is an explanation from the Alliance for Paired Donation website (http://www.paireddonation.org/):

"Kidney paired donation matches one incompatible donor/recipient pair to another pair in the same situation, so that the donor of the first pair gives to the recipient of the second, and vice versa. In other words, the two pairs swap kidneys . APD has also pioneered a new way of using altruistic, or good Samaritan, donors, so that the transplants no longer have to be performed simultaneously. Non-simultaneous Extended Altruistic Donor Chains (NEAD Chains ) allow donors to “pay it forward” after their loved one receives a transplant."

Basically, it means that even if you don't have the same blood type O as Matt, you can still participate by donating to another deserving person and, in turn, Matt would receive a kidney!

When we read that APD had coordinated the longest-running open-ended kidney transplant chain which changed the lives of 20 people we thought, "We've gotta get a hold of them!" Here's the article from People Magazine: http://www.paireddonation.org/files/peopleMagazine.pdf Conveniently, it turns out that the Transplant Program at the University of Minnesota Medical Center Fairview is a partner of APD.

Many Kidney Transplant Centers would love to be able to provide this option more readily to their patients, but a system for this kind of nationwide cross-matching just hasn't been fully developed yet. The United Network for Organ Sharing (UNOS) is currently developing a pilot program to be launched this fall of 2010. It will be coordinated by Organ Procurement and Transplantation Network (OPTN). It will involve four organizations to represent more than 80 kidney transplant programs nationwide, the Alliance for Paired Donation in Maumee, Ohio is one of them.

According to James Wynn, M.D., president of the OPTN and UNOS and chair of the OPTN/UNOS Board of Directors, "Each group was chosen for its experience with kidney paired donation and its willingness to broaden the availability of this procedure to a much wider group of people needing transplants." The pilot program aims to determine if a similar program could be implemented nationwide. The full article is available if you'd like to know more about the pilot program, http://unos.org/news/newsDetail.asp?id=1344.

If you are interested in exploring the option of paired donation, our intake coordinator Lessa Ennis can guide you every step of the way. She herself was a paired kidney donor in 2009 which is why she now does this type of work. She has graciously made herself available to share her experience as a donor also, she loves to discuss it! If you'd like to contact Lessa, the following is her information as well as a few initial letters she provided for interested donors.

Lessa C. Ennis
Volunteer Intake Coordinator
lessa.c.ennis@gmail.com
Alliance for Paired Donation
Kidney Donor 2009
512-415-3711

Information Letter:
https://mail.google.com/mail/?ui=2&ik=c291acda5b&view=att&th=1272539af665513a&attid=0.1&disp=vah&realattid=f_g6cg0l560&zw

Letter for Kidney Donors:
https://mail.google.com/mail/?ui=2&ik=c291acda5b&view=att&th=1272539af665513a&attid=0.2&disp=vah&realattid=f_g6cg0qmh1&zw

January 2010

Rachel Massie — Tue, 20 Apr 2010 16:55:00 GMT

Rachel finds out that her crossmatching test is good and has her second appointment with Dr. Matas, the Kidney Transplant Surgeon at the University of MN. He explains that due to the previous surgery she had on her right kidney (she was born with a narrow ureter that had to be surgically repaired) there was likely to be too much scar tissue to perform a successful transplant. Another concern is that one of her kidneys may not function as well as the other and they would not want to leave her with that kindey nor give it to Matt. He encourages her to continue advocating and raising awareness for her brother.

February 2010

Rachel Massie — Tue, 20 Apr 2010 16:55:00 GMT

Matt's Aunt finds out her second series of blood tests look promising and heads to the University of MN to meet with the transplant team. They complete some physical exams and determine that there are a couple of concerning risk factors:
1. She has high blood pressure.
2. She may be prone to developing kidney stones. She has had a lap-band procedure and there is a new study that has found that people who have undergone that procedure are more likely to develop kidney stones.
The donor work-up is a two day process, but due to an unfortunate miscommunication she only knew about one day of testing and had to return home unable to complete the second day of testing. Due to the above risk factors, it is unlikely that she will be considered a good candidate for donation.

Matt is disappointed to find out that his aunt may not be considered a donor candidate. It becomes almost scary to have hope because if it doesn't work out, the hurt of the let down is so great. A lot of things need to line up in order to find a compatible donor, but it will happen and the day he gets that phone call will make it all the ups and downs worthwhile.

November 2009

Rachel Massie — Tue, 20 Apr 2010 16:54:00 GMT

Matt has his colonoscopy scheduled for the November 26th, the day after Thanksgiving. If he hadn't done it that day he would've had to wait until January and since this was the last requirement he needed to complete before beginning to accrue time on the deceased donor list, it was better to do sooner than later. If you're not familiar with the prep before a colonoscopy, you can't eat anything the entire day before and have to drink about a gallon of a not-so-pleasant liquid that flushes everything out of your system. You spend a lot of time in the bathroom that day. Since, Matt couldn't eat anything on Thanksgiving day, the family celebrated the following day after his appointment because by then he was really ready to eat

One of Matt's aunts finds out she is a compatible blood match, but there are a few other blood tests they have to undergo. The process moves very slowly and she is not contacted again to complete these blood tests until January. At this point, Matt's family realizes that they need to play a more active role in advocating to help find him a donor. There are too many details that need to be followed up on to risk having his file get buried at the bottom of the pile.

December 16th, 2010

Rachel Massie — Tue, 20 Apr 2010 16:54:00 GMT

Matt is finally completes his work-up and is placed on the deceased donor list and begins accruing wait time. The average wait for a deceased donor organ is 5-6 years.

October 2009

Rachel Massie — Tue, 20 Apr 2010 16:53:00 GMT

Jaimée asks the living donor coordinator, Margaret Voges, about the paired donation program. It is great option for patients that do not have a living donor with a matching blood type. The program finds a matching pair in the same situation and coordinates the "exchange" of organs so that recipient A receives an organ from donor B and recipient B receives an organ from donor A. These paired donations (or exchanges) can involve several people as well! Here is a great success story that you may have heard about: http://www.paireddonation.org/files/peopleMagazine.pdf.

Despite the promise of this option, Margaret suggests that we wait to see what kind of response we get from potential living donors before we pursue the option of paired donation.

September 2009

Rachel Massie — Tue, 20 Apr 2010 16:50:00 GMT

Doctors had determined by this time that Matt's kidneys would most likely not begin working again. The chest catheter that Matt had placed in June as the access point for dialysis has a high risk of infection, he couldn't get it wet for 3 months so taking showers was a real challenge.

They decided to create a fistula on his forearm as a longer term access point for hemodialysis. An arteriovenous fistula is created by surgically connecting an artery to a vein. Over the next few weeks or months the vein gradually becomes larger and stronger allowing repeated access to the vascular system over a longer period of time (see arteriovenous fistula http://kidney.niddk.nih.gov/kudiseases/pubs/vascularaccess/). Matt underwent this procedure on Sept 2nd and had to wait several weeks for it to become strong enough for use during dialysis before he could have the chest catheter removed.

Matt was referred to the Kidney Transplant Program at the University of Minnesota. On September 16-17, Matt, Jaimee and Rachel went to the two-day work up and education sessions to get Matt on the Deceased Donor List. He underwent physical exams with several specialists to make sure he is physically sound to have surgery, and also met with social workers and transplant educators that provided a wealth of information regarding both short and long term expectations. He finds out that he needs to have a colonoscopy done before he can start accumulating time on the deceased donor list. He will have to do that once he returns home to Duluth.

During the same visit, Jaimee and Rachel met with Margaret Voges, the Living Donor Coordinator, to start testing and find out if they were compatible donors. Jaimee's blood type is not a match (Matt needs a donor with blood type O, positive or negative doesn't matter). This also means that Matt's parents are not matches either. Rachel's blood type is a match, but Dr. Matas, the transplant surgeon, is concerned that Rachel has had a previous kidney surgery and history of kidney stones. Rachel does the second blood test that determines the compatibility of the antigens in her blood with the antibodies in Matt's blood, this test is call crossmatching.

Also in September, Matt got a dog!! He is a beautiful Singapiel Small Munsterlander Springer (try saying that even ONE time fast!) and his name is Windsor. He is a beautifully bred hunting dog and Matt was there the night he was born. He's very energetic, but he knows who's boss. They're a great team on their expeditions together.

June 2009

Rachel Massie — Mon, 19 Apr 2010 19:42:00 GMT

Matt was hospitalized. It turns out that the "cold" he had for the last 9 months wasn't that at all. His kidneys had started to shut down and the fluid was accumulating in his body and his lungs making it seem like a cold. He got very ill and had his mom took him to the clinic. The nurse practitioner there, bless her heart, took a look at his medical history and his blood pressure and sent him straight to the ER. She had previously worked at a Nephrology clinic and knew exactly what she was dealing with. Through the ER, he was admitted straight to the Intensive Care Unit of St Mary's Hospital in Duluth, MN with very high blood pressure (250/1??). He was diagnosed with kidney failure and kept in the ICU for a week until his blood pressure was controlled.

Dialysis was started at that time with the hopes that once his blood pressure was controlled, his kidneys would start working again. A chest catheter was surgically placed into a blood vessel near his collar bone as the access point for dialysis (See venous catheter for temporary access http://kidney.niddk.nih.gov/kudiseases/pubs/vascularaccess/). Matt was discharged from the hospital and began his dialysis regimen of 3 times per week. We were very optimistic at this point and Matt was certain that he would be off of dialysis in time for the trip he had booked to Alaska in August.

Fall 2008 - Spring 2009

Rachel Massie — Mon, 19 Apr 2010 19:39:00 GMT

Matt was sick for months with what he and doctors thought was a cold or some kind of infection. He didn't feel well and had a lot of fluid in his chest. He went to the doctor on two different occasions during this time and both times was prescribed antibiotics. It didn't go away. The worst part is that on both occasions the health care providers took his blood pressure (which was 200 or more) and commented on how high it was. Judging by the way it was shrugged off, how was he to know it was really serious? Matt now knows that with blood pressure that high for so long, he's lucky he didn't suffer any of the other serious complications. As if kidney failure isn't severe enough, the damage to his blood vessels could've caused a heart attack, stroke, aneurysm, vision loss, and the list goes on.

Health care providers do amazing work. However, we have to keep in mind that they are human and things can be overlooked. Even with all of the knowledge they possess, sometimes they fail to educate their patients and provide them with necessary information. We have to pay attention to our bodily cues, ask questions and be informed about our own health because we know our bodies best and know when something isn't right. We have to take responsibility and work with doctors to be healthy, not put all of our trust in them and expect them to investigate our concerns if we don't ask about them. It just doesn't work that way.

Welcome

Rachel Massie — Tue, 06 Apr 2010 20:46:15 GMT

Welcome to my blog. Please check back soon for new entries.