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NIH Testimonials for ARPKD/CHF Research
Dear Family and Friends of ARPKD/CHF,
I am writing today to urge those individuals who are
debating/reviewing going to the NIH study. I admit, my family and I
really had to think about the pro's and con's of this study and
initially my thought was "why put our son through more testing,
etc”....however, how wrong we were to think that...we did decide to
go to the NIH and I can honestly and with great happiness say that
we have really enjoyed participating in this study, and learnt more
than we thought we already knew! This study is so important.
Not just to us, but to all those affected currently or in future
years. The NIH is incredibly supportive and informative. The
Children's Inn was awesome and my son never wanted to leave.....they
had camps and activities for the kids and our son thought he was on
vacation! We even managed to do some sightseeing. I am
compelled to post this message to urge people to go to the NIH, so
that they can collect data on our kids, learn from them and
hopefully find a way to STOP this disease which will benefit OUR
kids! But they need kids in order to help them…I am from
Canada and I know primarily those participating are American but
they need as many families as possible to go...so to those Canadians
that are debating going...GO!
We live at SickKids in Toronto and
it’s a great hospital and all our team at home thought it a great
study to participate in. Probably the most wonderful part out
of all of this was that this disease can make you feel so isolated
as a family sometimes, and what was so wonderful for my son and my
family was that we met 3 other families with the same illness all
staying the week with him at the Inn and the day hospital...he felt
so connected and part of 'something" (and he is only 7). To
Colleen and her family at the ARPKD/CHF Alliance, she is truly to be
commended for helping launch this protocol and the NIH......I know
for sure this Canadian family will be back next year in hopes that
we can help learn more from this illness ...and my son tonight in
bed has already requested that he try to go the same time next year
as all the other kids he met!
With great hope for the future for our kids,
~Doug and Deborah
from
Liam’s Light
"Thank you!
I just wanted to send a note to thank you for
your involvement in getting the PKD/CHF study started. My son
Zachary, is affected with both PKD and CHF and was involved in the
study the first week in February. He flew with his father to
Maryland to the NIH where he was greeted with open arms by Dr. Gunay.
She was very friendly and answered all of the questions asked of her
and made my son and husband feel very comfortable. The tests (MRI,
Ultrasound, EEG, eye exam, etc.) were very involved but very
non-invasive other than the simple blood draw. By being involved in
this small way, we feel that we did something towards finding an
answer to this complicated and devastating disease that has struck
our family, and we really appreciate the chance to come there and be
involved. Thank you so much!"
~Barry and Debbie
"I feel compelled to
tell you about our week at the NIH. Although we were
pleased with the work of our doctors here in Canada, we were
interested to participate in the NIH study. Our daughter (4
yo.) is followed very closely up here and we were not sure a week
at the NIH could provide more information. Boy, were we
wrong!
Looking at this trip just from the medical point of view, it was
very helpful. Dr Gunay and Dr Font-Montgomery are some of the
nicest doctors we've met. They are also very knowledgeable.
We also met specialists such as liver specialist, pulmonary
function specialist, opthalmologist and more.
At the end of the week, we had a very clear
picture of our daughter's condition and what lies in the future, and
since we think knowledge is power, we were quite pleased to learn
all that we have learned."
Now, on the NIH itself. This is the best hospital we visited
plain and simple. It is very modern, it has all the latest
equipment. On top of that, the staff and volunteers are very
friendly. We basically never waited for our appointments.
Wow, it was unlike anything we had ever seen. Although the
Montreal's
Children's Hospital is quite good, the NIH is so far ahead it's
unbelievable.
Our stay at the Children's
Inn was
amazing. Let me just say we have been to 4 stars hotels that
have less to offer. I will resume this email by saying this:
Even after enduring long days filled with tests, my daughter cried
when it was time to leave because she wanted to stay longer. I
think this says a lot."
~ Bruno
"The
Children's
Inn is wonderful and has so much for
her to do. They have a computer room, craft
room,
family room for videos, play room with tons of
toys, and a playground. The shuttle will take you places -
they have shopping trips, etc. You can take
the Metro
into DC for some fun sight seeing. I had a
great
experience. Dr. Gunay is wonderful - so
gentle. The
tests were not bad, aside from blood draws -
but I
guess I'm used to those. The
Inn
gives the children
little presents each day in their
mailbox - they do
lots to make the stay as comfortable
as possible. I
was very impressed. Don't be scared
- once you meet
Dr. Gunay you will realize what
great hands you are
in! We are due to go back in a
couple months. Good
luck!"
~Shannon
"I
want to reinforce what
Shannon said
about the NIH and the Children’s Inn.
We have gone two times now and the experience
has been very positive. They
really do their best to make the kids
comfortable. Of course, nobody likes
blood draws, and we had to haul around urine
specimen collection materials,
but everything else was fine. Dr.
Gunay is wonderful, and the rest of the
staff is good too. Megan did just
fine most of the time. The Children’s
Inn is great, and there are lots of fun things
to do, especially for the
little kids. I think you’ll be glad you went.
Good luck!"
~Sam
"Everything already said about the
time at NIH is so true. We’ve been there twice, and it has been so
positive. Last time I got upset about some of the labs, and got a
little teary, and Dr Gunay and the other doctor working with her –
were so wonderful in making sure I knew it was nothing to worry
about. I would say that out of the whole stay, there was only one
hard day – the one that we had to stay over in the hospital and
Ellie couldn’t bend either arm due to the catheter on one arm and
the blood pressure monitor on the other. But after that, it was all
easy.
The Children’s Inn is great, but I’m also impressed with the staff
at the NIH. For such a large organization, they have excellent
customer service. And they do special things for the kids. We were
there when dogs were brought in for the kids to see, and Ellie was
so happy because she missed our dog so much. There are art
activities, etc. We were there before Christmas and I can’t tell
you how many gifts were received at the hospital and from the
Children’s Inn. It was really overwhelming.
As far as
doctors specializing in ARPKD, I have discovered that one of the
authorities on ARPKD is near to me, at Wisconsin Children’s Hospital
(Dr. Avner). I asked Dr Gunay if she thought it would be worth it
for us to travel an hour or so to have him as Ellie’s nephrologist
and she said we should if we have the opportunity."
~Laurie
"We just returned from our first
visit to NIH and we were very impressed with Dr. Gunay’s bedside
manner. It is exciting to have access to unlimited government funds
and a new $400 million dollar research facility to study ARPKD/CHF.
We were a bit
concerned the atmosphere would be too probing, poking and sterile
for our son Drew. That was not the case. The Children’s Inn
situated right next to the research facility was new and beautiful.
There was an indoor playground with 4 Nintendo’s, a teen center
with TV’s, a game room with pool table and 4 Playstations, several
cafeteria style seating areas with commercial kitchen appliances to
make all the food you want, several lounge areas with big screen
TV’s and the bedroom was spotless and comfortable. There was a
laundry with plenty of machines and an outdoor playground. The
staff was courteous and aware that we were under a lot of stress and
handled us with compassion. I didn’t expect all these pleasant
distractions and as a result we will return for visit number 2 next
year.
I should also
mention the new research facility was constructed to be less like a
hospital setting and more like a corporate facility. I found this
very calming. One great thing about this facility was the nice
playroom on the floor we were admitted to. We took our daughter
that is 3, the Recreation Specialist kept both Drew and her busy
when we were discussing topics with the doctors. All this and they
gave us money for food and gas. Good old tax payer money at work
for our disease process.
Since I’m short
on time I will finish with the most uplifting information. We had
such a thorough experience specific to ARPKD/CHF and our son, that
we will substitute this trip for the other educational opportunities
available for PKD. Dr Gunay was there for us everyday and provided
hope. She has unlimited government resources and is willing and
able to pursue more than high blood pressure treatments to curb the
effects of this disease process. I’m talking TREATMENT not
maintenance."
~Brian
"My son who is now just
six has taken part in the NIH study twice. Each time I was sure
that he would ask a lot of questions, and each time he hasn't. But
I can tell you that you are not constantly doing tests. There is a
lot of down time when you and your daughter can do some fun stuff.
They have two big play rooms with games, guinea pigs, videos, etc.
They also have a library. Also there are kids there from literally
all over the world. Truthfully, some of the children "look sick,"
but many don't and Sam had a good time playing with the other kids.
Also, the staff is terrific, in all the departments, they make the
tests as fun as possible, and freely give out treats. Kids order
their food hotel room service style which is also fun for them.
Finally, you can leave the NIH grounds. We live only 15 minutes
away so I know the area well. If you would like to get some ideas
of what to do, please do not hesitate to call me. Even though we
live so close, the two times we went Sam and I just stayed the whole
time. A final thought, Sam so far is not affected by the disease,
but I explained to him that by participating in the study he is
helping many children. He seemed to accept that explanation for his
participation. Maybe it would make your daughter feel better to
know that not only will this help her, but it will help others as
well. Good Luck!"
~Julie
"I think this is such a great opportunity to
increase the medical community's knowledge about ARPKD, and I also
think it is a great opportunity to get a very comprehensive view of
how ARPKD is affecting our children. I don't know about
everyone else's situation, but I know that our doctor does not do
such in-depth testing. And, our health insurance is
covering less and less of the costs of tests that are done. It is a
wonderful opportunity from a personal and a global perspective!
Anyway, it will be interesting to share our
results and experiences, so I hope many of us will be participating."
~ARPKD/CHF mom
"I just returned
from my week in the NIH. I must say that Dr. Gunay and everyone
else I met were absolutely wonderful. It turns out that I do have
ARPKD-unlike the initial diagnosis of CHF. My kidneys are only
mildly affected - seems that most of the disease went to my liver.
I encourage everyone to participate in this study. NIH helps with
so much. I received free transportation, housing for my mother, and
money for food. Not only that, but the doctors at NIH are going to
help me by setting me up with doctors and free testing to save me
from my insurance agency who has been refusing my medical care. I
do not want to see this study cut because of lack of participation
because it is so beneficial."
~ARPKD/CHF Adult, name withheld
"We participated in the NIH study the
end of June and had a wonderful experience. Yes, the schedule is
likely to change due to the fact that so many doctors/specialists
are involved. But, Dr. Gunay is very good about informing you of
changes each day and really stays on top of everything. Our
daughter is 3 and was able to leave her room between tests and at
the end of the day. We took her to the cafeteria to eat and to the
play room for crafts, movies, playtime, etc. I stayed with her in
her room each night while my husband and 5 yr old son stayed at the
Children's Inn...which was very convenient and a beautiful place.
Overall, we were highly impressed with Dr. Gunay and her team...they
are VERY knowledgeable, informative, and committed to helping ARPKD
families. I encourage all to participate!"
~Linda
"They're very nice at the Children's Inn and do so much to make the
children comfortable -- siblings, too. They give the kids a little
"surprise" every morning in their own mailbox – it’s fun for them.
I'm sure they'll have different things for your kids, since they're
older, but we got little
stuffed animals and things. Also huge Easter
baskets, since we were there after Easter.
They do have a lot of rules, but I know it's
necessary to make it an enjoyable stay for everyone. You have to
make your own bed, etc.
They just finished the addition, so
you'll be able to exercise there if you want to. That was one thing
that I could have really used to relieve stress
while I was there!
We stayed at the hospital one night
while they did the 24 hour urine collection, blood pressure
monitoring and first thing in the morning blood draws. The nurses
wanted us to stay 2 nights, but Dr Gunay is so empathetic and knew
that Ellie wanted to go back to the Children's Inn with her brother and dad, so we did the
flushing of the IV thing and collected urine over night ourselves --
no big deal.
They do put in a "port" that's like an IV
so they can do multiple blood draws, but that means only one stick.
She was also sedated for her MRI and had an IV at that time-- Megan
may not have to because she's probably old enough to lay still.
Luckily, Ellie is the kind of kid who can never
get enough attention -- so had a good time at the study! We also
got to sightsee 2 days while still staying at the Children's Inn --
Dr Gunay had made the reservation for the week, so we were entitled
to stay.
It was a good experience and so informative --
I'm looking forward to going back!"
~Laurie
"It was a great experience, and I highly recommend
it. Dr. Gunay is terrific, and really made things easy for us. She
actually was able to work all the needed tests into two days.
Amazing. We got good information and a couple of things to talk to
our GI doc about. Anyway, thought I'd put in my two cents worth.
Hope everyone is having a great summer."
~Sam
"If anyone
is still wondering about the ARPKD study at the NIH, I just wanted
to encourage you to participate. Carolyn is enrolled in it & had her
1st visit the end of July. Dr. Gunay is awesome & the Children's Inn
is a great place to stay. We even got to meet 2 other children with
ARPKD!! We haven't even done that in our home town. One of the best
parts is getting to have a CD ROM of all the imaging studies done
and a full report. We learned so much! Our doctor at home
agreed to not repeating any of the same tests
so that the annual NIH study tests will be the only time Carolyn
will have to have the ultrasound, EKG, etc. That makes me feel
better to not put her through anything twice. I'd be happy to answer
any questions anyone might have about the study."
~Beth
P.S. Our 5 yr. old also went with us and he
loved The Children's
Inn so much, he
cried when we left!
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