welcome to the organic green doctor blog

i am a family physician who was diagnosed with
early mild cognitive impairment(mci) amnestic type on december 21, 2010
this is a precursor to alzheimers disease
because of this diagnosis i have opted to stop practicing medicine
this blog will be about my journey with this disease
please feel free to follow me along this path
i will continue blogging on organic gardening, green living,
solar power, rainwater collection, and healthy living
i will blog on these plus other things noted to be interesting

Tuesday, October 1, 2019

update on mr hudson

this weekend i posted an entry on my facebook blog page
the response was overwhelming from folks
here below is my posting

that picture is mr hudson laying on his back on his couch
he looked up as the picture was taken

its been a year since he was able to breathe just room air.
i must say he has breathed smiles into our lives over the last year.
he loves things he likes to touch them taste them caress them.
he likes to hug those he loves.
he loves to hug his black puppy dog doll.
he loves playing in the dirt and the garden soil just dont tell mom ok.
his next year will be a life changer for him.
he has important testing done in two months that will set the course for his eventual kidney transplant next year.
right now his kidney function is stable not good but stable.
the goal is to keep him there until he gets big enough for the transplant.
donors are being evaluated to see who is the best donor.
yes his mom is one of those being evaluated.
but sometimes the familys kidneys dont match so other donors are lined up if that happens.
we want the best kidney transplant donor for him .
he will probably have to have several in the future but this one is probably the most important one.
without a live donor he will be placed on the donor list.
it can take 4 years to get a kidney that way.
he would have to be on dialysis for 4 years.
even though dialysis works it doesnt work like a real kidney.
other organs in the body get adversely affected.
once he gets transplanted and stabilized he gets to stop his two shots one once a week and one every day.
he also gets to stop the other four meds he takes by mouth.
he will be given two new rejection meds to take.
thats why so much care is being done by the transplant team to find the donor that matches the best for hudson.
this choice will decide how healthy he is in the future.

this is mr hudson driving my car and not letting go of the lemon we picked on our walk
he loves trucks tractors firetrucks cars and dogs

today i add this

no mr hudson is not on dialysis
the goal is not to let him get on dialysis as it can affect other organs in his body
if he has to have it he has to have it

so far his kidney function has been stable 
we hope it stays that way
if it can stay that way until he gains enough weight to be transplanted that would be ideal

the ideal kidney donor is a live donor
a live donor kidney lasts sometimes twice as long
for mr hudson that could get him if he is transplanted at 2 years old
that could carry him forward until his early adult life before he needs the next one
who knows what technology will be available by then 
maybe even growing your own kidney or other organs in the lab from you own cells
maybe even a  wearable portable small kidney
yes that technology is being done now
thanks in part to the organization kidney x
an organization comprised of federal groups like the nih and private groups and kidney organizations that are looking for innovative ideas
if you saw mr hudson on national tv or saw his picture on the national newspapers you may have read about kidney x and other  new government plans to increase kidney transplants and encourage more coverage for those affected by this disease
thank you mr h for being the face of kidney disease that day

mr hudson was born with a blocked drainage system that occurred during development
it was determined to be present on an ultrasound in the late second trimester
the decision was made to wait until delivery to address the issue

when he was born he was in kidney failure and heart failure
two weeks in i as a physician and grandfather thought at that point that mr hudson might not make it
i asked my wife she to bring ms b up to the nicu to see him as i was worried if she didnt see him there she might not ever see him alive
mr hudson loves ms b and ms b loves mr h

right after he was delivered a catheter was inserted and the obstruction a thin one was opened up 
it took just a few minutes to do 
since then his kidneys have been working well enough to keep a normal urine flow 
his kidney function is stable 
for those in the know his creatinine is 5.0 with a creatinine clearance below 10%
his right kidney is working at about 40%
his left kidney is working at about 10%
his left drain system is enlarged and causes reflux back to the kidney

here in december he will have tests to determine exactly
how well his kidneys are functioning
how well his drainage system is working
how bad is the reflux
lucky for him unlike other kids born with this problem his bladder is working ok

its possible after these tests that he will have to have his left kidney and left ureter removed since when he has the kidney transplant they dont want any reflux happening to any of the kidneys
this will need to be done before the transplant so that he can be totally healed up before the transplant

when he was in heart failure it was because he had about 2 lbs of fluid backed up in his body
this caused his heart to enlarge and to start to fail
after his urine was able to flow after he was born and the fluid in his body cleared out his heart gradually cleared up so that now one year later he has a normal electrocardiogram and ekg and doesnt need to see the cardiologists again

so what we have with mr hudson is a normal healthy 1 year old with no other health problems except for his kidneys
most kids in his situation arent that healthy

now we wait
setting up the donor list
when people step forward they are referred to the transplant clinic folks who take over
they are now in hipaa land
if you are in the medical field you know what hipaa means and sometimes you and the patients hate it

we dont know if someone has entered the donor workup unless that person tells us
its the hipaa thing

i counted 10 family members who have offered to be kidney donors
most have been rejected for reasons like age height size health issues 
they are strict in selecting donors
they are lined up based on age size heath issues geographic location
we know of 3 people for sure who are being worked up 
one promising donor found out she was pregnant during the evaluation

we learned from a response to the blog page post thats some corporations and organizations give their employees a 30 day paid leave for organ donation 

as mentioned above this first donor is the most important one
it will likely carry him into his early 20s
so they are being picky
mom is the primary donor but even though they share 50% of their dna sometimes there are antigens that eliminate her as a donor 
its not just blood type but there are lots of tissue antigens and blood antigens that have to be tested
the transplant team would like several people lined up to donate

if you read the stories of these kidney transplants in these young kids you see why they want donors lined up
sometimes the transplant fails
sometimes it gets rejected
then another kidney needs to be transplanted

a donor from the kidney donor program taken from people who died would be the next step 
the wait for a kid his age can be 4 years
he would be a kindergartner or kindergardener as i call them 
those kidneys dont last as long maybe as much as half the time ie 10 years
the thorough evaluation thats done on a live donor isnt quite as thorough on a deceased donor
these kidneys always have some damage although mild expecially if they are transported over long distances
thats why the push is for a live donor

luckily mr hudsons blood type makes him a universal recipient which makes it easier for him to match up with a potential donor

yes mom will probably be the donor but a consideration may be made to hold her for that second donation when he is an early adult when its even harder to get a kidney donation or kidney donor
the wait can be up to 10 years
he will get the best kidney donation on the first one no matter if its mom

thats where we stand with mr hudson
watching him grow
trying to fatten him up since he has about 4-5 lbs to gain before he is eligible for transplant

now i must say i have gotten quite attached to mr hudson
he loves my garden
i hate to see him go through all this but i know if all goes well that he could possibly be my age one day

i also feel like that i with my diagnosis i know that i am on borrowed time
either borrowed mental time or physical time
i am glad that i can be involved now at this early stage and am able to be helpful to mr hudson and his parents as they make this journey into the future
i realize that sometime in the next decade i will have to exit that journey
hopefully we will get him off to a good start

the organicgreen doctor

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