Tag Donate Life Month

Be A Hero

Michael 4 Comments

April is half over! In closer to normal years, people throughout the United States would be rushing to get to a post office to have their tax returns postmarked before midnight. It’s not a normal year. For the second April 15 in a row, it’s not been a normal year. For some.

Then there are some 107,000 people who would like today to turn extraordinary before midnight. Those are the people waiting for a transplant. Wait. Make that 107,001. About every 9 minutes another person is added to the list, another person moves another step away from normal. By the end of tonight 17 people will move off the list but not because they got their transplant.

DLAIf the numbers don’t get you – 107,000 waiting for transplant, a new person added every 9 minutes, 17 people dead each day because they did not get their transplant – how about this? April is half over. April is National Donate Life Month. There’s a Presidential proclamation and everything even. How many times did Donate Life Month headline a news report this month? How many people took to the streets to protest the needless loss of life of seventeen people yesterday, and the day before, and before that and before that and the one before that too?  How many times did you even hear about Donate Life Month before today?

Last year, 39,000 transplants were performed. I’ll do the math for you. That’s 106 transplant operations each day. At one added every 9 minutes, that’s 160 new additions to the transplant list. Every day we add 54 more people than we are transplanting.  That’s why the average waiting time for a kidney, which is the most common transplant performed, is 3 to 5 years. (Since I know you’re curious, lung and heart transplant waiting lists are about 6 months, pancreas about a year, and liver close to 5 years. Of course, a patient’s time on a waiting list is a factor of organ needed, blood and tissue type needed, and severity of illness.)

Saving lives is rarely a trending topic of Twitter, there are not many infographics on giving life on Facebook, and I haven’t seen one of those “How You Can Help” Instagram posts on alleviating the pain and suffering of up to 8 people with one act. More actually, and some even while you’re still alive! 

The number that gets thrown around a lot is that every organ donor can save 8 lives. One heart, two lungs, a liver, a pancreas, two kidneys, and the intestines. You can add to that two cornea, a lot of skin and a handful of other non-categorized tissues like the abdominal wall. That’s from a deceased donor.  Want to be a hero and still be around to feel good about it after the transplant. Living donations aren’t restricted to kidneys although they are the most common living donor organs transplanted. In addition to giving a kidney to transplant you can also donate a portion of your liver, pancreas and intestines, and one lung, For the most recent period, March of this year, the Organ Procurement and Transportation Network of the U.S. Department of Health and Human Services, reported 9,878 transplant surgeries of all types performed for March 2021 from 4,740 donations.* But that’s just solid organ donations. You can also donate bone marrow for transplant. And if all of that seems too icky for you, there’s still blood donation.

Don’t let the second half of Donate Life Month go by as innocuously as the first. Do something. At the very least register to be an organ donor after life when you renew your drivers license.  For more information on solid organ donation and transplant in the United States go to https://www.organdonor.gov/. You won’t make the news, nobody will say you name, and there will not be parade in your honor. Do it anyway.

* How can you perform more surgeries than you had donations? From living donors you can’t, but from deceased donors you can transplant multiple organs. In March there were 1,463 living donors responsible for 1,478 transplants (multiple living organ donations are rare but possible with kidney/pancreas transplants) and 4,740 deceased donors contributed to 9,878 transplants.

 

Step 3a…The Journey Continues

Michael 16 Comments

We stepped off the elevator and I was sure we turned the wrong way in the garage. I read the directions off to my daughter and we were both certain that we had selected the correct garage entrance and floor and entered the building at the door indicated on those directions. It was a little difficult with the construction going on in the parking structure. Much of the signage was obscured and it lent enough of an air of uncertainty that the only thing I was certain of was that I wasn’t certain. When we went from the brightly lit elevator into the dim hallway I thought this wasn’t going to be my day. That’s when the neighboring elevator pinged and a young lady rushed out, saw us and said, “I am so sorry. I’m late. Let me get this opened up and check you in.” I breathed a sigh of relief that I hadn’t gone completely crazy. Yet.

Welcome to the continuing story of As the Kidney Turns. Last week I finally had my in person evaluation appointment and initial round of tests for a potential kidney transplant. I’m calling this Step 3a because there are more tests to come before we get to Step 4, the (hopefully) acceptance.

Step 3 Day started early. Apparently too early. I’ve never been one to be fashionably late. If told to be somewhere at 8, I show up at 7:45 so when I was told to be somewhere at 7:45…well. But I used to worked right down the street from where we were and I knew that if the stars weren’t lined up just right, and the traffic lights were working against you, it could take 20 minutes to go 3 blocks in that part of town. My daughter was with me for the appointment and we didn’t have to be concerned that we were a couple minutes late getting started. We would end up spending the next 7 hours there.

The day started like any doctor appointment. Height, weight, and insurance. Not necessarily in that order. I was checked in which amounted to verifying insurance and demographics, signing various authorizations and releases, and being led to a combination office/exam room. Then things got different in a hurry. There we spent the next four hours meeting with an insurance specialist, two doctors, a pharmacist, a social worker, and my personal transplant coordinator who would be my contact throughout the process all the way to the surgery if that would be the (again hopefully) ultimate end. (I then would be transferred to a post-transplant coordinator who would stay with me presumably until my ultimate end.)

We talked about the actual procedure, that a my own kidneys are not removed but a new location is prepared for the transplanted organ and the how the blood, nerve and fluid connections are made, where that space might be, and the physical recovery from the operation. Most people recover in the hospital for 5 to 7 days then at home for another month or so before resuming regular activities.

We talked how with a transplant the recovery process never really ends. The initial follow-up requires twice weekly visits to the transplant center for 4 to 6 weeks, then weekly visits, then twice a month, then monthly, and so on until I would stabilize at life time annual visits. Post-transplant specific medications are used for life to lessen the chance of rejection and infection.

We talked how if accepted into the program while awaiting a transplant there will be the need for ongoing tests and examinations to continually affirm my suitability. In the absence of a living donor that wait could be 4 to 5 years. Those tests include specific blood tests drawn every month and because I have Wegener’s Granulomatosis which is treated with an immunosuppressant, I would have to be re-cleared by those physicians every 6 months confirming I have no exacerbation of that disease or confounding effects of the drugs used to treat it.

We discussed the differences in recovery and results between living and deceased donated kidneys. If you’re wondering, kidneys from living donors tend to begin working shortly after implantation and can last for 15 years or longer. Those from deceased donors may take several days to begin working and can be expected to keep on working for 8 to 10 years. Also, again if you’re wondering and because I always had, a living donor who should someday need his or her own kidney transplant will receive priority in their own journey.

We also talked about what all this means to me and my family. Pre-transplant for me means continuing with dialysis and some more frequent doctor visits to insure I remain suitable for the procedure (if it’s determined that I am to begin with). The additional blood test can be drawn at the dialysis clinic so that would be one less trip I’d have to make each week. Speaking of trips, if I feel like taking one I’d have to notify my coordinator where and for how long I’d be. Because I live alone, after transplant for those first few weeks I’d need someone to stay with me or I to stay with someone. I would also need assistance getting around initially and getting around would be necessary having to make the trips into town for those checkups at the clinic. Fortunately, those will be short trips. Family gets involved right away. One of the requirements is attending a patient and family education class that goes over in more detail all that was discussed at last week’s appointment.

After all the meetings with all the people and a physical exam from both doctors (there were two doctors because one was the medical specialist and one the surgeon), I was set loose in the hospital for various tests. Those included to the lab for blood test (17 tubes, yikes!) and a urine sample (only one, thankfully), to cardiology for an EKG, and to xray for chest xrays and a sonogram of the kidney and one of what I have been given to replace the bladder. Still to come are a stress test, an echocardiogram, a cystogram, and (my favorite) (yeah, right), a colonoscopy.

Early returns seem to indicate I might be able to pull this off. Nothing came up at the initial exams that would have immediately disqualified me and the test results that have come back are more or less normal, for me. The remaining tests are scheduled over the next several weeks and I hope to have a definite answer by June. Then we can start thinking about possible donors and a whole new step.

DLAAgain, thank you for staying on the journey with me. Coincidence continues. This month my transplant evaluation coincides with National Donate Life Month. Every April, Donate Life America celebrates National Donate Life Month, focusing national attention on every individual’s power to make life possible by registering as an organ, eye, and tissue donor, and learning more about living donation. Many years ago I registered to be a donor. That was long before I ever suspected I would someday be looking at transplants from a recipient’s perspective. If you’d like to explore becoming an organ or tissue donor, check with your local transplant center, your personal physician or the Donate Life America website, or register at RegisterMe.org.

Related posts

First Steps (Feb. 15, 2018)
The Next Step (March 15, 2018)