I have VHL and finally after 8 years or so of dealing with this disease, I have finally been invited to NIH. I now have a 4.5cm tumor on my remaining left kidney. My question is...can someone give me an idea of what to expect from NIH? As far as lodging we are military so I am not worried (I can stay at The Navy Lodge across the street). I am just a bit nervous of what to expect at an initial appointment. My husband is once again deployed so I will be going Solo which after all these years isn't much of a big deal. Honestly, I am just thankful that I will finally be seen. My military docs have been wonderful and are doing a great job with monitoring my son, but with VHL being so darn active with me I think it is time.
Thanks for any and all input. I truly appreciate it!
Take Care and God Bless!
Kiesha
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
First trip to NIH
- By Kiesharodriguez2001
- Posted August 29, 2009 at 8:25 am · 20 replies
- In Health management issues
- Shared with the public
Explore topics in this discussion:
20 replies
- Oldest first
- Newest first
- By TinaDiane
- Posted August 29, 2009 at 11:03 pm
- Report post
My first trip to NIH, I was lucky to have a regular VHL screening. So, I had blood work first, CT scans, MRIs, PET scans, hearing tests, eye exams, and had a strict schedule to keep for appointments, tests, and eating had to be worked in. So, I explored the facility and found out where the cafeterias were, and all the elevators, and each department. There are maps and help stations everywhere. Most people are very nice and eager to help. I always try to be early for appointments as it is a busy place! Take a book for reading and it is helpful to have copies of your prior health care (even if you sent them ahead). When your clinic appointments are held, you will meet with a RN first for vitals, then an interview with a Resident or Fellow (MDs in training) and then hopefully, with the head of the department. Sometimes, I have only met with Residents and Fellows, not the head guy. It is helpful to have all your questions written down and go over your list with the docs. You can go to Medical records and fill out a form to have records of your visit sent to you and your MDs. It is a huge place so finding your bearings is important.
Good luck at your first visit, and let us know how you are doing!
Best of health to us all,
Tina
- By MichelleC
- Posted August 30, 2009 at 11:05 am
- Report post
Well said, Tina. My son and I have always found everyone to be extremely friendly and helpful at NIH. It is a big place but the hospital is beautiful - state of the art - and the grounds are all well kept. All the technicians were willing to explain the tests as they were being done. So much different than the outside medical world. My son especially enjoyed the Library, I think it is on the 7th floor.
God bless,
Michelle
- By kimbre
- Posted August 30, 2009 at 12:23 pm
- Report post
Hi Kiesha,
I have been to NIH several times. I too had a 4.5 cm tumor on my left kidney, something in common! I had robotic surgery to remove just the 3 tumors on that side. I was very pleased with the results. You should get your schedule prior to your visit. Then, the first thing I always have to do is get a urine jug and start the 24 hr. urine test. You can keep the urine in the fridge on the urology floor where you will report. I have gotten confused at times about where I need to be, so just ask. Some of the staff aren't the most enthusiastic but they are nice. I bring treats with me sometimes to give them to brighten them up! Anyway, you will most likely get blood work, a renal scan, and any CT's or MRI's they need. Sometimes the wait can be long and may run into other appointments but you can just let them know. I have felt lonely while there since I go alone but I usually bring music to listen to, books to read, etc. I like to go for walks about the campus. It is so pretty. The food is pretty good in the cafeteria too. You usually meet other patients so that is nice as well. People are so willing to share their stories... I hope everything goes well. The doctors I worked with, namely Dr. Bratslavsky, are wonderful. You will really like them I think.
All the best,
Kim
- By Kiesharodriguez2001
- Posted August 30, 2009 at 2:53 pm
- Report post
Thank you so much to everyone for your input. Looks like I may even need to be reminded to breathe! I am sure it will be very interesting. Except for the 24 hour urine...my 14 yr old calls it the "orange jug of fun". As you can tell he so looks forward to those.
Kim...not too sure who I will be seeing but I have been working with Cris Leite and my urologist here has been in heavy contact with Dr. Linehan. I will keep you all posted and again THANK YOU!!!!
- By FridayThe13th
- Posted August 30, 2009 at 7:56 pm
- Report post
Hey! I'm curious to when you'll be up at NIH? I'll be there October 25th to the 28th for a 3 month post op follow up and for exams. It'd be nice to meet other people with VHL ( I'm the only one in my family with it ).
As far as what to expect don't worry. I think everybody is nervous the first time up but they're really great. Everything there is pretty state of the art so most of the testing is done very quickly.
As far as food goes I will warn you. Don't go to the 2nd floor cafeteria. It really is hospital food. The 1st floor cafeteria ( B1 cafeteria as it's listed ) is really good. Thought I'd tell ya since you have a kid and that cafeteria has a pizza place, grill, salad, and sushi bar in it.
Oh yeah and if you get bored there is a gym with some basketball hoops and a couple pool tables in the same building as the B1 cafeteria. Go to the pink elevators and it's on the 14th floor.
- By TinaDiane
- Posted August 30, 2009 at 10:50 pm
- Report post
Dr. Linehan is a BRAINIAC GENIUS! He is surprisingly easy to talk to. He is very busy, and you will be lucky to actually meet him. If you do, remember to thank him for all of us VHLers, as he is the MAN that discovered the VHL gene mutations that got us in trouble to begin with. He told me he kept on seeing family members with the same kind of kidney cancer, and he was like a dog without a bone for 10 years until they discovered which gene caused the problems. We are so lucky there are docs out there that are not just interested in $$$ and are willing to dedicate their lives to helping folks like us.
Tina
- By Kiesharodriguez2001
- Posted September 1, 2009 at 1:35 pm
- Report post
Thanks Tina! I feel so much better about everything now. I never knew who Dr. Linehan was now I feel kinda dumb. At least I know who my doc here was talking to. WOW!! I will be sure to thank him over and over if I have the chance to actually meet him.
Friday--Thanks for the cafeteria info, my son is not traveling with me yet-his disease is not "active" at this time. BUT as you can tell I am not one for bland food. ;)
I will be at NIH 9/27-10/1 or 2. I do agree it would have been nice to meet. If I do plan on having surgery done there I may be back the same time frame as you since my husband is due back from deployment during that time frame. If I have surgery he WILL be there---that I can't do solo. I will keep you posted!
Take care!
God Bless!
Kiesha
- By MichelleC
- Posted September 2, 2009 at 12:04 pm
- Report post
Friday-
My son and I will be there 10/25-28.
We wil be at Children's Inn.
Maybe we can meet up?
Michelle
- By Kiesharodriguez2001
- Posted September 2, 2009 at 12:07 pm
- Report post
I will absoluetely keep that in mind not sure what or when they will plan things out for me.
Thanks so much Michelle!
Kiesha
- By pupa
- Posted September 3, 2009 at 8:50 am
- Report post
We were there at the Childerns Inn Everybody is wonderful. You wont want to leave (Just leave healthy) All my best Good luck
- By bnewbegin
- Posted September 4, 2009 at 11:25 pm
- Report post
Hey gang,
Not sure if the timing will work, but I'll be down at NIH twice this fall.
Oct 1-6 testing, scans, blah, blah, blah.
Oct 7-14 Surgery to remove an endolymphatic sac tumor from the left ear.
Nov ? Cochlear implant right
Nov ? Surgery to remove an endolymphatic sac tumor from the right.
I'd love to meet some other VHL'ers and swap the secret handshake :-)
Brian Newbegin
- By lifeandhope
- Posted September 5, 2009 at 1:48 pm
- Report post
Brian, I'll be at NIH Nov 3-5, so let me know if you'll be there at the same time and I'll meet up with you. It would be nice to meet another VHLer/NIHer in person!
Tara
- By MichelleC
- Posted September 5, 2009 at 8:06 pm
- Report post
Brian,
Would like to meet up if you are there end of Oct.
Sounds like you will be spending sometime at NIH.
Would like to know how the endolymphatic sac tumor
surgery works out...both ears?
Our prayers will be with you!
Michelle
- By Heather31200
- Posted October 9, 2009 at 6:57 am
- Report post
how do I get a hold of NIH for my husband? His neuro surgeon wants to give up on him. HELP PLEASE!!!
- By Kiesharodriguez2001
- Posted October 9, 2009 at 10:41 am
- Report post
Hello Heather!
My Urologist was the first to contact NIH for me. After his initial contact I was given the name of a clincal nurse to start the process. I would suggest your husband's neurosurgeon begin the process to find out if he qualifies. I am sure Joyce Graff would have the proper answers for you. I apologize for not being more help. Best wishes to you and your husband. NIH is a great place, very understanding and thorough.
Take care!
God Bless!!
Kiesha
- By bnewbegin
- Posted October 10, 2009 at 9:48 am
- Report post
Hi guys, my surgery was rescheduled. I'll be at NIH October 19-28. Surgery is on the 21st. I'm staying on 7NW-S. I'f anyone is there during that time, let me know!
- By MichelleC
- Posted October 12, 2009 at 1:56 pm
- Report post
Brian,
My son and I will be there for adrenal follow up on Oct 25-28. We will look for you!
Michelle
- By Kiesharodriguez2001
- Posted October 17, 2009 at 4:02 pm
- Report post
Hello everyone!
Sorry for my delay in updating you all on my trip to NIH-two teenagers is all I can say! ;)
Anyhow, my trip was interesting...met some really nice VHLers and the people at NIH were spectacular toward me. Only one execption in CT but there has to be one right??
So, the plan is to monitor me some more for a bit. The one 4.5cm is actually a cyst...Phew! But I do have a 2.8cm tumor that they are watching closely. I was also offered the opportunity to join the ZD6474 study while they monitor me. Haven't made my decision as of yet. My husband is still deployed and with the follow up I need to be sure someone can be here for my kids as well. I did just have some MRIs this week and my GFR is down to 43 (not bad for 3/4 of a kidney!)....will find out results within the next few weeks.
Thanks again for all of your support, I do appreciate EVERYTHING!
Take care and may God bless us all!!
Kiesha :)
- By ronfiremedic
- Posted October 21, 2009 at 6:27 pm
- Report post
45 year old firefighter with 3, 1.5 cm tumors on my right kidney. My urologist thinks it's VHL but no known family history. Anyone with insight? He wants to monitor until they grow to 3 cm. How do I confirm the VHL diagnosis and where, with who? Any input greatly appreciated.
- By kimbre
- Posted October 22, 2009 at 5:33 pm
- Report post
hi- you can get blood drawn and sent to Johns Hopkins for VHL testing. you can get it confirmed there. ask your doctor and he can find out more. i had my blood drawn at a genetic clinic here in my state at a major hospital and they sent it out. it takes several weeks to get the results...
Add to the discussion