Big News: Update on my personal situation
In 2015 when I was first placed on the wait list for a cadaver kidney, my estimated wait time was about six years. My kidney function has diminished somewhat since then but has remained essentially stable for almost a year, which is very good news for me.
Recently I received a call from the transplant coordinator at Mass. General Hospital inviting me to be placed on a separate list for those willing to consider a kidney that is expected not to last as long as a young person might need. I have now undergone a new series of tests (bloodwork, x-ray, cat scan, and stress test) which show that I am indeed still healthy enough at age 78 to have a kidney transplant. On this new list it is estimated that I might get a a kidney within one or two more years, effectively cutting two or three years off my original estimated wait.
On a related though separate matter, one slightly positive aspect to the terrible current Opioid epidemic that hasn't been publicized very much is that in the last couple of years the number of cadaver organ donations has increased considerably. Fortunately for those of us hoping for kidney transplants, the kidney from a person who dies from an Opioid overdose is perfectly viable for transplantation.
Update on my personal situation
The good news is that my blood work numbers have been reasonably stable for several months, and I have not had to start dialysis. Also, I have completed more than one year of my expected six years' wait for a cadaver kidney.
On the other hand, no new potential living donors have volunteered on my behalf, and trials of one wearable hemodialysis machine have been terminated. I am still looking for a donor.
The Difficult Ethics of Organ Donations From Living Donors
"A woman wanted to donate the kidney of her dying husband. And that raised all sorts of hard questions."
From the Wall Street Journal: http://www.wsj.com/articles/the-difficult-ethics-of-organ-donations-from-living-donors-1466993281 .
The patient was a registered organ donor and on life support. His family wanted to donate a kidney and perhaps other organs before pulling the plug. Their vote wasn't enough.
Congress introduces bill to remove barriers to living kidney donation
This just in from "Nephrology News and Issues."
This bipartisan bill would offer some protection to living kidney donors but certainly does not go far enough to ease the enormous shortage. However, even a small bipartisan step like this is worth celebrating in the present congressional climate.
Progress toward an Artificial Kidney!
The possibility of an artificial kidney is much closer to reality than we had imagined, but still is unlikely to be available in my lifetime.
I urge you to follow this link http://pharm.ucsf.edu/kidney/news-events and read the February 2, 2016 document "The Kidney Project - FAQ 3 0.pdf" . This short document explains clearly what the Kidney Project is, what the timeline is for testing and availability, and the need for additional funding. More detailed information about the Kidney Project can be found on their Home page http://pharm.ucsf.edu/kidney
The Kidney Project has already received a $6 million grant from the National Institutes of Health (NIS), and additional funding could substantially speed up the process of making the artifical kidney available to those of us who could benefit. Page 5 of the Kidney Project FAQ document ("Funding") tells how you can make donations to this project even if you can't or don't want to donate a living kidney.
This followup report was published on 2/17/2016 in Medical News Today: "Implantable artificial kidney based on microchips sees major progress." http://www.medicalnewstoday.com/articles/306659.php?trendmd-shared=0
Two steps back and one forward
Our first volunteer donor has been ruled ineligible for medical reasons, so our search continues.
Also, we have just begun to realize that "donor chains" (which swap recipients to match donors) are unlikely to help me, because I need a type "O" donor, and since type "O" is "universal donor," any eligible type "O" donor wishing to donate for a particular recipient will be a good fit for that recipient, so no "chain" will be needed.
On the other hand, we are now investigating transplant centers in other regions that claim to have shorter wait times than do the Boston centers. One midwest center does not do transplants for anyone over 70, unlike Boston, but we are also exploring Pittsburg and Florida as well, where my age doesn't automatically disqualify me.
Three more testimonials
My department chair at Suffolk University, Prof. Edith Cook, and two more artists, Karin Rosenthal and Ellen Fisher, have provided notes that now appear on the Testimonials page.
A recent kidney transplant recipient reminded us that he had many offers that didn't match before a matching donor was found, so we should not get discouraged. We do now have a couple of volunteers who have indicated they plan to start the donor evaluation process, so that is helpful news.
Paired Kidney Donation
The Links and resourcesLinks page now has a section just below the MGH contact information about Paired Kidney Donation, which enables a healthy but non-compatible donor to help an intended recipient.
NHC Hesed (Caring) Alert
My situation has been listed on the National Havurah Committee's Hesed Listserv on a Hesed (Caring) Alert dated December 3, 2015:
"Eric Myrvaagnes / Yaakov ben Sara, suffering from Stage 4 chronic kidney disease (www.ericneedsakidney.org)."
New rules aim to make kidney transplants more fair
New rules intended to create a more level playing field for those awaiting kidney transplants in the United States went into effect near the end of 2014. This means that posted "wait times" from the old system may no longer be accurate. For details see: http://www.cbsnews.com/news/new-rules-aim-to-make-kidney-transplants-more-fair/
Editing of Pig DNA May Lead to More Organs for People
New DNA research suggests that eventually it may be possible to lessen the shortage of human kidneys for transplant by using genetically "edited" pig kidneys. From the New York Times: http://www.nytimes.com/2015/10/20/science/editing-of-pig-dna-may-lead-to-more-organs-for-people.html
Misplaced Craigslist ad leads to kidney donor match
A New Jersey widower looking for construction supplies on Craigslist came across a misplaced ad from a woman in need of a kidney transplant. For details see: http://www.theguardian.com/us-news/2015/nov/21/craigslist-kidney-donor-connection-new-jersey
Blood Donation Stories
Over about twenty-five years I donated some 7 gallons of valuable Type O- blood ("Universal Donor", in only 7% of the population) at Boston Childrens Hospital . A few years ago I benefited from the generosity of other donors of the same rare bood type when I received 7 units of blood during hospitalization for an ulcer. Thus I know both the gratitude of the recipient as well as the sense of satisfaction of the donor. The American Red Cross has moving stories from both sides at: