OUR NEW LIFE AT HOME
Tuesday 2/2/99
We had Zach’s last Dr. visit at Stanford for a while. Dr.
Theodore wasn't there but Dr. Singer bravely fended off all of
my questions with the assistance of Helen, one of the nurse transplant
coordinators. They insist that Zach should be able to lead a
pretty normal life in spite of how much his parents worry. I
asked about school and exposure to other kids, swimming pools,
cold weather, skinned knees, salt in his diet and anything else
I can think of and they felt that Zach should be able to be treated
like any other two-year old. Zach’s old heart has still
not been sent to Dr. Garabedian to examine. Apparently the pathologist
is hesitant about parting with it which I guess I can understand
since it certainly was unique. Hopefully we will at least get
him the path report so he can see what we were fighting and maybe
help more clearly identify some of the problems that Zach’s
second cousin Daniel Wollman is dealing with. The plan if for
Zach to start seeing Dr. Garabedian and to go back to Stanford
in 3 months.
I inquired about contacts to network with that might be dealing
with the same thing but apparently Zach is even more unique than
I thought. Only about 10 toddlers have successfully had the heart
AND LUNG transplant in the world. That certainly doesn't make
for much company but it reminds us just how lucky we are.
We spent the rest of the afternoon with the Staffords and
said our long good-byes. It's amazing how much the entire Stafford
family has become involved in our lives since that first phone
call back in late August/early September before we even knew
them.
The flight back was a pleasant struggle. Zach wanted to play
and be entertained which was fine with us but not as enjoyable
for the people trying to sleep on the plane.
Joe and Melissa and a persistent but friendly news crew from
KREM 2 met us at the airport. Reporter Rex Roland quizzed us
on a few basic human interest questions and thankfully let us
off quick and easy.
It was great to be back at the house and it was astonishing
just how well Zach remembered everything. He's absolutely giddy
with excitement! He took out all of his toys almost as if he
was taking inventory. And he wobbled through every room in the
house just checking things out. Gina stayed up with Zach and
I crashed at about midnight and he was still playing. After all
that we've been through we are having a hard time forcing him
into a schedule.
Sunday 2/7/99 11:20 PM
I keep waiting to wake up or something. Everything had been hectic
but very pleasant since we've gotten home. Gina had been on a
cleaning frenzy to reclaim the house. Zach had been doing great
and I'm starting to get use to my routine of taking his vitals.
Since Gina has to take care of his medications (we're down to
11 now that we don't have the Diuril and diazepam) the least
I can do is take his vitals. Mom, Dad, my brother Jeff as well
as Jim and Jodie Ruster and their 3 year old daughter Allie were
over for dinner yesterday. Well actually Jim and Jodie brought
dinner over for everybody and today Shane and Amber Anderson
were over from Coeur d’ Alene to go truck shopping and then
over for dinner. Shane told Amber he had to get a new truck before
they had kids, I wish I was that good of a negotiator. They are
both great with Kids and will be a wonderful addition to our
"Friends With Kids That Zach Can Play With" list. Zach
did great both days and seems to be adjusting very well to being
around people. So far he hasn't been sick, I'm not excited for
the first cold he’ll eventually get from someone but the
since the doctors say not to worry so be it!
Saturday 2/13/99
Today was Zach’s second birthday.
We didn't have a big party like last time but it was a joyous
occasion none the less. Both sets of grandparents were over as
well as my brother Jeff, Joe and Melissa, Gina’s sister
Samantha and Tony Rausch. Mom and Dad brought ribs from Tony
Roma’s for every one and Zach was in a good mood despite
having a touch of diarrhea. Little symptoms like that will probably
be something that always worries us a little but even with Zach’s
history it’s getting easier to take the little things in
stride.
Sunday 2/14/99
It was Zach’s first time back at St. Peters today. It was
a pretty mass since Zach slept through most of the service. Our
neighbors Nick and Brenda’s new daughter was baptised at
the service. It brought back all kinds of memories about Zach’s
second surgery and his hastily arranged baptism that the late
Deacon Don Schuster preformed for us. My how things have changed
for both our family and his. Life is so precious and fleeting.
I learned later that Father Tracy went to intoduce us and we
had ducked out early because of our appointment with the news
crew. I guess at least we weren't asleep or something!
KREM 2 came and did another follow up for Zach’s birthday/Valentine’s
day. This was Zach’s fourth T.V. appearance since the transplant.
He’s getting to be quite a star but I'm sure that all the
attention will subside soon and our lives will become more and
more normal, or at least I hope so!
Gina and I have a date planned for Valentine’s day tonight.
Just another sign that life is getting back to normal for us.
It’s a lot easier to get people to baby sit (in this case
it will be Gina’s parents) when there isn’t a great
risk that the child will stop breathing.
Fifteen years ago today Stormie Jones received the first ever
heart-liver transplant.
Wednesday 12/17/99
Today was our first visit to Dr. Garabedian since we left for
the transplant. It was a nice visit with him and talk about how
worried we were and how close it was. He is obviously very excited
about having a positive outcome in a patient whose prognosis
looked so bleak. He is very eager to get started learning the
ins and outs of taking care of his first heart-lung transplant
patient. Many of the medications and protocol with Stanford are
new to him but we have boundless faith in Dr. Garabedian and
his ability to learn to take care of Zach’s unique situation.
Everything went well, the Prograf was a little low so we will
go back up to 8 ml twice daily. There was a small amount of fluid
around the heart but that has been there since the transplant.
We are to return for another "get reacquainted visit"
in three weeks.
Wednesday 2/24/99
Today we took Zach to the Odessa Vs Almira/Coulee/Hartline
district basketball playoff game. It was a good outing for Zach.
He seemed to handle the excitement of a overtime ‘winner
to state’ playoff game very well. I still have a hard time
with the exposure to so many potentially sick people but it’s
getting easier. Zach continues to play and run and have lots
of fun. The other morning Gina called me at work because Zach
went to his toy box and got out a ball that we sometimes play
catch with. He took it to my side of the bed, through it down
on the bed and said "Daddy". That really brightened
up my day, especially since even though he runs and plays a lot,
he hasn’t done much talking since the transplant.
Friday 3/5/99
Wednesday was the first of what we hope are many boys nights
out for Zach and I. We went to run a few errands then we stopped
and say Marge and Jerry Murphy of the Lions club and then we
went and watched one of the state "B" basketball games.
Zach is often pretty fussy when he is away from his mom. Since
she’s had to take care of him so much I'm sure it will be
a bit of an adjustment for him. Zach has had a cold but no fever
the since the games so we've been taking it easy and keeping
him at home. It’s one week until Zach had him coming home/birthday
party and we want him to be well for all his visitors.
Saturday 3/13/99
We celebrated Zach’s birthday today with about 40 kids,
friends & relatives. This was the first time we've been to
Lincoln Hites Pizza since the small gathering we had before Zach’s
first visit to Stanford. This was WAY more fun.
Tuesday 4/6/99
It's been a while since I've been able to catch up on my diary.
That's a good sign that means Zach is active and o.k. and keeping
us busy. Over easter we had a four day weekend and were able
to take Zach to Yakima to see his god parents Paul and Andera
Zagelow, almost the entire Lucas and Helen Ozuna family and Zach's
great grandma Dorothy in bellingham as well as second cousin
Carrie Zagelow and fiance Duncan in Seattle and Zach's uncle
Tom in Anacortes. Zach traveled well and enjoyed seeing the sights
when he wasn't sleeping in his car seat. After attending easter
service at the church where Gina and I were married (St. Paul
Cathedral in Yakima) Zach and I both took a nap during the afternoon
easter egg hunt. It was a nice trip
but somehow during all the excitement we managed to forget Zach's
azothiaprine for two days which is one of his immunosuppressants.
He was still on the Prograf and prednisone and he seems fine
but it was a bit of a scare for us and we've adjusted how we
check his medications so that hopefully it won't ever happen
again.
Yesterday we had an appointment with Dr. Garabedian at the
Heart Institute and all went
well. We had our regular blood draw and Zach's prograf was a
little low so we bumped it up to 9ml twice daily. Dr. Garabedian
also gave me several questions to ask the Stanford people during
next months visit.
- How often would blood work and x-rays be done if Zach were
being seen regularly at Stanford?
- Zach's blood pressure is pretty good. Does he still need
furosemide and potassium?
- Does Zach still need Zantac to help prevent upset stomach?
- The magnesium to help reduce the risk of osteoporosis from
the steroids causes Zach a lot of diarrhea. What is the lowest
dose we can safely get away with?
- Would an antiinflammatory work to decrease some of the fluid
around the heart?
- Would giving prednisone in a double dose every other day
be an option to help reduce some of the cushings type side effects.
(i.e. chubby cheeks)
Sunday 4/11/99
Zach's web site is coming along and I even managed to eradicate
a virus from my computer. It's hard to believe 2&1/2 months
ago I didn't even know which drive was which. I'm glad the project
is almost completed since it's getting nice and I can't hardly
wait for days when Zach & I can go to the park. It's nice
that Zach and I can handle it on our own more & more so that
Gina can get a break more often. On Tuesday KXLY will film us
to help support fund raising for Children's Miracle Network.
Children's Miracle Network raises money in the Spokane area to
support the pediatric units at local hospitals, pay for new equipment,
improvements, etc. They are going to film us at the park with
Zach where we spent so much of our time before the transplant.
It will be nice to be at the park but I'm not sure how I feel
about reliving the time before the transplant.
Zach is still not talking yet but he understands very well
although he doesn't always choose to listen! Most of our conversation
consists of guta-guta-guta or nooga-nuga-nuga.
Tuesday 4/13/99
We spent most of the morning at the duck pond at Manito Park
with Richard Brown from KXLY, his cameraman David Sanchez and
Angie Lorenz from Children's Miracle Network doing a promotional
piece for the telethon on June 5th & 6th. It is certainly
different being at the park with Zach now than it was while he
was on the transplant list. Hopefully they can cut out the parts
where we can't hardly hold on to him because he wants to chase
the seagulls so much! Zach had a great time like always at the
park and this time we did too. Even though thinking about our
times in the hospital and our time on the transplant list is
still a sometimes a little painful for us, we are always eager
to talk about it. The more we can talk about Zach's story the
easier it becomes and the more we feel like we are helping the
cause of organ donation. The Children's Miracle Network is also
a good cause and much of the very expensive equipment at the
hospitals that Zach required was purchased by C.M.N.
Monday 4/14/99
Zach had another great weekend. We spend some time at the rodeo
with my step Zach's Uncle and Aunt Pam & Tom. The bull riding
scared Zach at first but by the end of the night (and after a
hotdog) he seemed to be having a good time. We also enjoyed some
time in the sun at Coeurd A'lene while I had softball practice.
Today was the long awaited kick off of the Children's Miracle
Network drive. I donated some money from my credit union web
site. C.M.N. is really working to make it easy for people to
donate money so the can make their goal of $800,000. It was great
to see so many people supporting a worthy cause. There were a
couple of promo pieces with Drew Bledsoe and Bobby Brett spoke
in person. I spoke briefly with Dr. Lee who is one of the pediatric
intensivists who cared for Zach. I especially enjoyed meeting
the Gonzaga Bulldog
basketball team. I spoke with Ryan Floyd who is from Harrington
(about 24 miles from where I grew up) and I enjoyed meeting some
of the other players who presented us with a final eight t-shirt.
It was great that all the returning players were there and I
particularly was impressed with Matt Santangelo. His leadership
off the court rivals his leadership in the NCAA tournament. As
Zach gets older we'll talk a lot about the kind of guys we want
to root for. Drew Bledsoe, Wayne Gretsky, David Robinson, Mark
McGwire and guys like the G.U. man's team who are class individuals
on AND OFF the court.
I'm kicking myself because I got a little thrown off after
watching the promotional piece on Zach and I left out a couple
things while I was speaking. ONE: I was going to thank MedStar
the air ambulance service that flew us down to Stanford for the
transplant. They were the ones that got us involved with CMN
in the first place and without them we would have had to try
to sell the house and relocate and possibly live separately so
Zach and Gina could be closer to Stanford and TWO: I was going
to see if all the Gonzaga guys were already on a hoopfest team!
Tuesday 4/20/99
Dad, Gina, Zach & I had lunch today at the sports page with
a group of transplant patients who meet weekly. They were a fascinating
group mostly in the 35-65 age range consisting mostly of heart
and heart-lung transplants. A couple people in the group are
"domino transplant" recipients. These people received
a heart and lungs and donated their heart to someone else. Wow!
technology is amazing! I was especially fascinated by Gay and
another younger woman whose name suddenly escapes me. They are
both healthy and active heart-lung recipients one who is 8 years
post transplant and the other is 13 years out! The more successful
long term heart-lung transplant recipients we meet the better!
Sunday 4/24/99
I was up until 5:30 A.M. on the internet last night. I am shocked
and saddened by the number of anti-transplant views and the number
of people interested in only donating their organs for profit.
Don't they know you can't take it with you?!? According to transplant
doctor Jeffery Punch M.D. only 1/2 of eligible organ donors who
die in the U.S. donate their organs. I hope this number is wrong
but regardless, if Zach's story can convince one person to be
an organ donor it could save 5 to 7 lives.
Wednesday 4/27/99
I received another E-mail response today from the website. This
one brought back a lot of memories about what it was like while
waiting on the list and it reminds me how lucky we were with
only a two week wait on the transplant list.
Hi, My name is Suzy Thurman. My husband is awaiting a transplant
for a
liver. He is very ill and has been waiting for 1 year. He is
at the Davenport Hospital now as he is to ill to be at home.
We are praying each day for a liver, we have a friend in Canada
who had a transplant 11 years ago and has had a baby since then.
She is a great support to us. She has a saying, and I was always
going to get T-shirts, that said it on them..."Don't take
your organs to heaven, heaven knows we need them here!"
I hope you and your family all the best, and am praying for Zach
to have a
long, healthy life.
Suzy, our thoughts and prayers go out to you. Don't give up!
We've seen so many last minute miracles during our journey. Here's
where to get the shirt you want: http://www.transplantawareness.org/shirts2.html.
We'll pray for your husband. Good luck and god bless, Mike, Gina
& Zach Zagelow
Wednesday 5/5/99
Found an interesting tidbit on the UNOS
website today. There were on 37 heart-lung transplants preformed
in the U.S. last year and only TWO were in the 1-5 year old age
range.
Monday 5/10/99 2:00 A.M.
We leave for California in six and 1/2 hours for Zach's six
month check-up. Even though everything is going great there
is a part of me that will always remember our August 12th 1998
visit to Dr. Garabedian where we thought things were going well
and we found out Zach needed the transplant. Hopefully some day
I'll learn to put that stuff our of my mind.
Gary Thurman's (see the 4/27/98 entry) obituary was in the
paper this week end. Even though I never met Gary or many of
the other potential transplant people who I have met or been
told about, it will always baffle me why these people have to
die when there is the technology to save them but not enough
willing organ donors.
Tuesday 5/11/99
Zach's appointment went well and we had a nice visit with the
Staffords and their family in Redwood
City where we stayed. Our next appointment at Stanford is November
8th (the day before Zach's one year transplant anniversary).
Thursday 5/14/99
***Letter from Stanford MD's to Dr. Garabedian.***
Dear Dr. Garabedian:
We had the pleasure of seeing Zachary Zagelow and his parents
in follow-up in our post transplant clinic today. Zachary is
now six months post heart/lung transplant.
His parents report that Zachary is doing well. He is active
and playful, and running around. He does not seem to tire easily.
They do comment that he occasionally has blue lips when he has
been crying and screaming for some time, but otherwise has no
cyanosis (blueness) or syncopal (fainting) episodes.
Zachary is eating well and gaining weight. He does occasionally
have some fussiness with meals and gas, for which he is treated
with simethicone. He remains on Zantac. He has been tapered off
Valium.
One concern is that Zachary is not speaking and a developmental
evaluation has already been planned. He seems to hear normally
according to his parents, but we have suggested that a hearing
evaluation might be indicated as well.
Zachary's current medications include: (Current
Medications).
On physical examination he is very active and looks well.
He is slightly cushingoid.(This is the fullness in the face
and neck that comes from taking steroids regularly to prevent
rejection.) His weight has increased to 13.1 kg and is height
has increased by 1.8 cm since his last visit. BP has been well
controlled at home and was 104/61 in our clinic. His heart rate
was 114. Respiratory rate 28 and SaO2 100% on room air. Temperature
was 36.3 (centigrade) axillary (under the arm, this
usually runs one degree cooler than oral.) He has no adenopathy
(swollen or sensitive glands). The oropharnyx (nose
and mouth) was clear. Tympanic membranes (inside the ear)
appear normal. Chest was clear to auscultation. (No raspy
sounds when you listen to it.) Abdomen was benign; skin and
joints appeared normal.
Lab work done today demonstrates an elevated Prograf level
of 17.4. His creatinine has increased to .9 from a previous level
of .6. His BUN is 32, increased from 20. Otherwise his lab work
was unremarkable. A chest X-ray was not done today but one was
done about a month ago in Spokane. We appreciate your echo report
which showed a tiny persistent pericardial effusion (a small
pocket of fluid around the heart that has been there since the
transplant) with otherwise normal function..
IMPRESSION AND RECOMMENDATION:
Zachary appears to be doing very well. We agree that it is time
to evaluate his delayed speech and would recommend a hearing
evaluation as well as a developmental evaluation. We have reduce
the Prograf to 3.5 mg bid (twice daily) because of the
elevated level and will have levels checked in three days. As
his weigh has increased, we have increased the Imuran (azathioprine
to help with immunosuppression) to 25mg per day and will
repeat his CBC in one week to ensure no leukopenia (a abnormally
low level of white blood cells-these are the ones that fight
infection). Our target Imuran dose would be at least 2mg/kg.
His father asked about reducing his prednisone or switching it
to every other day. However, we currently taper patients to .2mg/kg
and Zachary is currently taking less than that so we would not
recommend any further changes. Eventually, we will want to increase
his prednisone dose as he gains weight. Mike asked about some
of Zach's other medications. The main indication for the Lasix
(furosemide-a strong diuretic) was the treatment of pulmonary
edema (fluid in the lungs) and effusions (body fluid
seeping into the chest cavity). If his chest x-ray remains
clear he could be tapered off the Lasix gradually as tolerated.
Similiarly, the Zantac could be tapered or discontinued if he
tolerates this. The other medications should remain unchanged.
We will arrange for Zachary to have his Epstein-Barr virus titer
checked, he was negative before transplantation and if he has
seroconverted we may consider a course of acyclovir (an antiviral
medication.)
We are very pleased with how Zachary is doing and plan to
see him again in six months. We look forward to our continued
partnership with you in his care. Please do not hesitate to contact
us if you have any questions.
Sincerely,
Lianne Singer, MD
Transplant Fellow
Heart/Lung and Lung Transplant Program
James Theodore, MD
Professor of Medicine
Medical Director, Heart/Lung & Lung Transplant Program
As it turned out Zach's next Prograf level was 14.5 which
is more acceptable and the E.B. virus remains negative which
is great news. Our first preliminary assessment showed Zach has
some deficiencies for his age in all four categories which include
fine motor and gross motor skills and especially in personal-social
development and language development. May 2nd and May 8th will
be more in depth assessments and May 9th we see Dr. Garabedian
again.
5/20/99
I read 'Jessica's
Heart-Double Lung Transplant Story' and the story of Amy
Labarbiera (the first every child to have a successful lung
retransplant after a heart-double lung transplant) today and
I'm reminded how lucky we are and how fragile life is, especially
for a transplant patient. Thank you God for everyday with Zachary.
5/30/99
Erin writes: Hello, I saw your website and read the story
of Zach. It was very touching.
The reason I'm writing is that my friend has to get a heart lung
transplant for pulmonary hypertension and the one question I
can't seem to find anywhere is "how long CAN she live"
she is 15 years old and her hypertension was discovered about
a week ago. If you could answer that question I would be SO thankful.
Mike writes: Erin, that's an excellent question and it
was one of our first questions too. One thing your friend has
going for her is she is young. The young patients seem to recover
faster and seem to make it longer on a set of lungs. The lungs
not the heart are usually the limiting factor. The tiny bronchules
in the lungs that exchange are very thin and not very durable.
Over time they tend to loose their ability to exchange air and
then the lungs don't function as well, they call this chronic
rejection. What our doctors told us is right now it's good to
get 10 years on a set of lungs. If the lungs start to suffer
from chronic rejection they can try to retransplant just the
lungs which has been done although with limited success so far.
A couple very important things to keep in mind is #1 technology
is racing ahead at an exponential rate (very fast) and with our
son we are willing to put our faith in technology (and God of
course). They are getting better and better at managing transplant
patients and extending their lives longer and longer. I met two
ladies who are older then your friend at a transplant lunch group
a few weeks ago. They both had heart lung transplants and are
active and doing great. One is nine years since the transplant,
the other is 13 years. The longest living heart-double lung recipient
lives in NewYork and he had his transplant in 1982 at Stanford
the year after they did the first every heart-lung transplant.
Part of the reason we haven't seen a lot of long term survivors
from this type of transplant is it has only been 18 years since
they started doing them but the more they do the better they
get. I would cherish every moment with my friend AND I would
plan on her setting the new record for survival. Please keep
us updated on her progress when you can. Godbless, Mike Zagelow
and family
6/6/99
Amanda writes: I came across your site by accident, and
what caught my eye was coarctation, my nephew had open heart
surgery at 7 weeks to correct it. I went out and changed my organ
donation card that day. Your story inspires me and gives me hope.
To know that there are people out there that care this much about
their children and other make me happy. God Bless you, your wife
and your beautiful child.
Mike writes: Amanda, thanks for the note. You should
have a lot of hope. As far as heart procedures go, cooarctation
is becoming a relatively routine surgery by todays standards.
It has been done more and more frequently and usually they kids
that have it lead normal healthy lives. Even after Zach's transplant
he has the same aorta where he had the coarct repair and it's
still doing great (we gets to see the pictures of it at every
echocardiogram). Good luck to you and your nephew!
6/7/99
We just got back home from spending the weekend at Missoula Montana.
We camped in a friends trailer (Shane & Amber Anderson) at
the KOA.
while we were in town for a softball tournament. The weekend
went great. We were able to handle Zach's meds pretty well even
while traveling. Zach loved the petting Zoo, the swing and the
slide at KOA, all the neat stuff to see in the gift shop at the
$10,000 Bar in Lincoln, barbecued ribs at Sizzler and we played
some peek-a-boo. He even traveled
well in the car mostly looking at his Thomas the tank and Teletubbies
books.
6/20/99
Zach is continuing to do great. His visit to Dr. Garabedian when
we got back from Montana went well. Dr. G. stopped in to the
pharmacy and told me Zach's prograf labs came back good and his
BUN and Creatinine level were back down to near normal. (These
levels are indicators of kidney function that are can be effected
by high Prograf levels.) I am told that the CMN telethon went
well and that Brian Prawdzik (heart-kidney tx pt from our church)
did great representing himself and Zach.
We had what may be a big break through this week. Although
I didn't hear it, Zach said mommy on two separate occasions.
Yea! Maybe we'll be back to talking soon. Zach's cousin Angel
Garza (ten years old) is staying with us for a couple of weeks
so it is nice to see Zach have contact with another youngster.
(It's also been nice to have a full time baby sitter too!)
Also I'm going to Kinko's tomorrow to proof some organ donor
cards I'm having made with Zach's web site on them.
6/22/99
Mike writes: Bob, I'm not sure how to say it but I just
wanted to say thanks. Every family and every child who endures
a transplant helps the medical community learn a little more
and our child is currently benefiting from that knowledge. Your
a talented web site designer, thanks for sharing Jessica's story.
Sincerely, Mike Zagelow & family.
www.zacharyz.com
Bob writes (on July 4th):
Hello Mike & Family:
Thank you very much for writing to us. I was amazed at how similar
our paths have been. My wife and I read Zach's story at your
website and felt an immediate kinship to your family. We shared
in many of your situations....I will continue to pray for continued
health for Zach and emotional healing for the trauma that your
family has endured. We know the pain of living on the edge for
so long.
Here's a small prayer that helped us through the darkest of
times:
" Do not be anxious about anything, but in everything
, by prayer and petition, with thanksgiving, present your requests
to God. And the peace of god that transcends all understanding,
will guard your hearts and your minds in Christ Jesus."
Philippians 4:6-7
Bob & Kerri DelCimmuto
Please stay in touch and let us know how Zach's doing. Please
feel free to call us any time.
Note: See the story of Bob and Kerri's daughter, Jessica
DelCimmuto.
6/26/99
We played in (although not very good) in Spokane's Hoopfest this
weekend. Zach has always liked watching basketball. We wore our
"Recycle Yourself" organ
donation Tee shirts.
7/1/99
Good friend and former college roommate Dr. Kyle Orwig had been
sending me E-Mails recently on some very promising research on
immune suppressants. One headline reads TREATMENT WITH HUMANIZED
MONOCLONAL ANTIBODY AGAINST CD154 PREVENTS ACUTE RENAL ALLOGRAFT
REJECTION IN NONHUMAN PRIMATES. The article reads pretty scientific
but I'll summarise to the best of my ability. What they have
done is transplanted kidney's in monkeys and given the monkeys
a drug (hu5C8) that interacts with a ligand (a ligand is just
something that binds with another molecule) called CD154 which
binds a receptor called CD40 which in turn helps control part
of the the immune response. Clear as mud right? Anyway essentially
what happens is one shot of this stuff prevented rejection in
the monkeys for 10 months without using any of the current immune
suppressant currently in use such as Prograf or prednisone. In
fact it worked better without those two drugs. Zach's Prograf
currently is about $600 per month and his prednisone causes weight
gain, mood changes and thickness in the neck and face among other
things so both medications are ones that we would love to be
able to part with. So far this avenue looks VERY promising but
a word of caution; this is only the beginning of a very long
road before any new drugs would actually become available. They
haven't even got to the human testing phase yet and lots of things
could still go wrong that would eliminate it as a new drug but,
every little bit of new knowledge they acquire brings a little
more hope for transplant patients, their long term survival and
their ability to some day live without immunosupressants.
7/13/99
We had an exellent Dr. appointment with Dr. Garabedian today.
We were able to discontinue the furosemide (the diuretic for
fluid retention/blood pressure) and the potassium so now we are
down to 9 medications per day. Zach discovered scribbling this
week.
8/4/99
All continues to be well with Zach. He is continuing his therapy
at the Spokane Guild School. He goes twice per week and receives
developmental therapy in 4 categories: gross motor, fine motor,
social and speech. It is going well but we are still trying to
work a few things out with the insurance company.
I continue to have some contact via E-mail with the aunt and
mother of Rose from Warren Penn. She is 15 years old and is a
potential candidate for a heart-lung transplant. They have many
of the same questions that I had when Zach was first given the
same prognosis. What are the odds, what's the long term outlook,
how do I know the hospital is good, how does pulmonary hypertension
work, etc.
Zach's great grandmother Dorothy and Gina's niece Kristen
are staying for the week. It's nice to have the extra help with
Zach.
8/12/99
It's hard to believe how far we've come in one year. It is one
year today since we found out Zach needed the transplant. We
spent the morning at the Spokane Guild School where Zach's therapy
continues. Zach continues to make more progress and listens to
and plays better with the therapists there but still no talking.
Gina, Zach and I went to breakfast at I-Hop, did his medications
like we always do and Zach knocked over a glass of water. We're
just a regular family with a two year old, just like we wanted.
8/30/99
Zach is still doing great. His latest interest is shooting baskets.
I only wish he liked his own little basket as much as our 8 foot
basket since he gets pretty heavy holding him up to the basket
after a while!
I had two interesting E-Mails this week. One was encouragement
from Steve who had a heart-lung transplant in St. Louis a few
years back. He has since married and had a son and lives a relatively
normal life now. Exactly what were always working towards with
Zach.
The second one was a lot tougher since it brought back so
many memories from a year ago for us.
It was from Rae Ann from Olympia Washington. Her son JJ is 14
months old and also needs a hear and both lungs. He is in the
PICU in Seattle. They are trying to decided between Stanford
and St. Louis for the transplant list and are also still trying
to come to terms with putting their child through more medical
stuff and potential suffering to prolong his life. These are
questions we had to work through too and of all the notes we've
received this one was one of the toughest for me since it hit
so close to home. I sent back all the answers I could along with
some encouragement. We pray that their family experiences some
of the good fortune we've had.
Our visit to Dr. Garabedian went great
today. Zach's echo and X-Rays look good.
Prograf (the most important drug) was a little low so we're going
to up the dose from 7 ml to 7.5.
September 19, 1999
We had a nice visit to Odessa for Deutches Fest. Zach got to
spend some quality time with his grandparents and enjoyed his
first pony ride at the home of Todd and Teri King. See
photo!
September 29, 1999
We had an appointment today with Dr. Cantlon at Spokane Ear,
Nose and Throat. Zach's hearing tested normal for his age. They
can't tell yet if one ear is better than the other but they can
tell he definitely hears o.k. So at least now we know when he
doesn't listen it's his own choice!
October 5, 1999
We took Zach off of the Zantac for his stomach about a week ago.
He is doing great without it but as we expected (we intentionally
stopped the Zantac one week before his blood draw was due) the
Prograf levels were lower without the Zantac so we've upped Zach's
dose to 9ml (4.5mg). Prograf is Zach's main immunosuppressant
and it's levels are very critical to Zach's long term success.
Any medication that is metabolised by the liver could potentially
change the levels of Prograf necessitating a dosing change.
October 24, 1999
Zach has had a great couple of weeks. He was a ring bearer in
his Aunt Melissa's wedding and also attended the wedding of Carrie
Zagelow to Duncan Bain. Zach's therapy at the Spokane Guild School
finally seems to be paying dividends. His is become more social
and interactive and is much more comfortable around strangers. |
