It gives me a great feeling when nephrologists and other medical professionals are recognizing that we are not properly educating our kidney failure (ESRD- those with End Stage Renal Disease) patients about all the options they may have.
In particular, over the years, the patients are told that dialysis is their solution to survival. Sure, dialysis is what they will need to stay alive—unless and until we can find a transplant for them. (Of course, if our politicians got their act together and took THEIR religion out of the discussion, we could start developing and transplanting stem-cell derived kidneys. In the meantime, we have a few companies that are processing porcine kidneys to render them capable of supporting human life.)
It turns out a fair number of ESRD patients really never meet with a nephrologist before their first dialysis treatment; about 1/3 of those undergoing dialysis had a “major event” (kidney failure) and are all of a sudden undergoing dialysis to preserve their lives. This is the reasons why those 30% (and as many as 75% of ESRD folks) are never evaluated for transplants.
That is a sad statistic, but we can make it worse- 80% of those who do get referred for transplant fail to receive one or find themselves on the “waitlist” for at least a year. (Moreover, these are cadaver transplants; even fewer are evaluated for live donor transplants, because of the limited capabilities of the transplant centers and hospitals with which they are associated.)
The system is geared to NOT search for a candidate until a patient is placed on the waitlist. And, at that time, their renal clearance is (GFR- glomerular filtration rate) is 20 ml/min. There’s also the racial component- Blacks are less likely to make the waiting list than whites, they wait longer, and are less likely to complete the evaluation process. (We’ve already discussed the bias that has just been corrected in detrermining clearance rates, too.)
Let’s get these issues cleared up and find ways to transplant more patients so they can live productive, enjoyable lives.
I, too, would love to see religion removed from topics like this so stem-cells could truly be explored and out to use, thanks for pointing that out. Fascinating topic, your blogs always make me think.
Thank you so much for your visit and comment, Kimberly.
Not a good way to approach this need.
I know several people who have received kidneys that saved their lives. One college friend received one from a local doctor in our area. But the donor read about my friend in our church’s publication and reached out. Otherwise, it was a long waiting game.
Another older friend received two infant kidneys, which was a huge blessing. She was on the wait list. But I have other friends who never got one and did die. You can’t do dialysis forever, and it’s a rough way to live.
Thank you for bringing this need to our attention. I will share this in the hopes that others will become aware.
Laurie
Glad to see you had a few friends who did manage to get a transplant, Laurie.
This is a heavy topic, having lived through kidney failure and ultimated diaysis and death of two loved ones. As a retired nurse, I remember the days of 2 dialysis chairs in the hospital to now experienceing free-standing dialysis units with multiple chairs and hours to provided dialysis. I am also dismayed with the lack of painting a picture of the quality of life while on dialysis. The transplant option is certainly another whole story. Thanks for your vision!
I have seen dialysis grow from a nascent acute therapy to the behemoth of today, Quality, finance, adequacy, next generation issues must still remain our focus.
Sounds like the system really needs a big over haul!
It certainly needs updating, Martha.