“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!”
“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!”
“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.”
“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!”
“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!”
“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.”
“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.”
“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!”
“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.”
“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.”
“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!”
“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!”
“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.”
“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.
P.S. Our 5 yr. old also went with us and he loved The Children’s Inn so much, he cried when we left!”