Endless POFibilities -- April 2001

My Experience at the NIH (National Institutes for Health)
by Crystal Pagel

My journey to the NIH to participate in their POF study started several months ago.

In November of 1999, I met Suzanne online due to a flubbed Southern California POF get together. We developed an online friendship and got to know each other through e-mails. Though our experiences with POF were vastly different, there is just something about the POF connection that creates a commonality between us all.

I was feeling frustrated with the lack of information that my doctors were able to give me regarding my POF. We are pretty much medically treated as post menopausal women; here is your Premarin and Provera and we’ll see ya next year! I felt as if I had come to the point in my life where I just needed more information about my medical condition, my personal health and a plan for living a healthy life. After reading another woman’s experience at the NIH, I decided to call and apply for the NIH POF study. At the same time, I encouraged Suzanne to do the same. We made a "pact" to do this together. I must tell you that it was the best decision I could have made. It was so great to have a buddy to go through this with. The NIH accepts two POF patients a week and we were the two for January 7-10, 2001. If this is something you are interested in, I would recommend trying to buddy up with someone. Post a message on the POF board and try to coordinate a time that you can go with someone. Get to know each other a little via e-mail before you go. It is a great resource of strength and comfort.

Suzanne is from Southern California and I am from Central California so we booked our flights together. It was almost surreal meeting each other for the first time in the airport! We enjoyed getting to know each other more and talking on the flight to Baltimore. We were quite sure the guy sitting next to us was wishing he was sitting somewhere else!!! We made our travel plans based on the time change. We left on a Saturday morning and stayed in a hotel in Bethesda Saturday night. We had a few hours to sightsee in Washington D.C. Sunday morning (the subway/metro is VERY easy to use…. I am public transportation illiterate and would define it as easy) and then took the NIH shuttle to the hospital Sunday afternoon. We arrived around 4:00 p.m. Any earlier would be too early and you would probably find yourself quite bored. There is nothing scheduled for that evening other than checking in and getting your room set up. You must arrive before 6:00 p.m. however or you will have to find a hotel again for Sunday night, as they do not admit patients after 6:00 p.m. I HIGHLY recommend eating a good meal before you go. You will have to fast after 7:00 p.m. for your blood draw the next morning. One of the cafeterias is being renovated and was closed while we were there so there was nothing to eat!

Monday morning the fun began. We were awakened early (6:00 a.m.) by the nurse to have our vitals taken lying, sitting and standing. We also had to give a urine sample. The phlebotomist was late due to someone calling in sick so she did not show up until after 8:00 a.m. (usually is between 6:00 a.m. and 7:00 a.m.). She drew 22 vials of blood!!! My new personal record! If you are squeamish when it comes to needles, I have to tell you that it wasn’t too bad. I have an awful time with blood samples and she got it right the first time! The blood is used for a large number of tests.

After the phlebotomist, an entourage of medical staff hit our room. You will have a "fellow" which is a dr. who is practicing under Dr. Nelson (head of the protocol). Be prepared to answer all medical history about yourself and immediate family members. I found it helpful to go through all of my family’s medical histories with my Mom and type up the results to have when I was at the NIH. We also met the nutritionist and filled out our menus for the following day. We were not on any kind of diet restriction. (I will get to the food quality later). We also met our nurses for the day. We were asked to turn in ALL of our drugs, prescription or over the counter. Any type of medication has to be dispensed through the nurse (i.e.: Advil if you get a headache). This was an annoying aspect of the hospital stay, but I understand the need to control the participant’s intake during the study. We were given a calendar for the next 3 days that had all of our appointments on them.

From 10:00 a.m. – 12:00 p.m. on Monday I had psychological testing where a few standardized tests are given to screen for the effects POF has on our mental and well being.

12:45 p.m. I had a regular and pelvic ultrasound. This required drinking an enormous amount of water, which you must hold in your bladder. Because I am not a water drinker, I found this test to be the most uncomfortable. If you have never had an ultrasound, they simply rub this little instrument on your belly while you lie there dying to go to the bathroom (they are obviously looking at your ovaries, uterus, etc.). After the Chinese Water Torture, they allow you to go to the bathroom, empty your bladder and then return for a vaginal ultrasound. If you haven’t had one of these, the instrument they use looks much worse than it is. It is a large looking wand that is placed inside the vagina (much like a tampon) and then further pictures are taken of the ovaries, uterus, etc.

After the ultrasounds, I had to go to radiology for two chest x-rays (not sure what they were looking for, but all tests relate to current theories regarding effects of POF on the body). All tests were completed by late afternoon on Monday.

Tuesday began with early morning (6:00 a.m.) vitals and more blood (only 6 this time).

At 10:30 I had a dental exam (yes, dental). They took several x-rays. If you have current x-rays from your dentist, I would recommend taking them with you. They were looking for bone condition (osteoporosis).
At 1:00 p.m. I had a DEXA, which is a bone density test. This is such an important test for POF’ers!

At 3:30 p.m. I had a pelvic exam with Vien where they ("they" meaning there was a nurse in training) also measured my clitoris (oh the things we endure for the sake of our health). It didn’t feel any different than an annual Pap smear. If you aren’t current with your pap smear you will have one. If you are, it’s just the pelvic exam. This was the end of our testing for the day.

Wednesday began the same at 6:00 a.m. with vitals and a blood draw (6 tubes again).

Next is the culmination of what you come to the NIH for. From 9:00 a.m. – 11:00 a.m. we met together with Dr. Nelson. He explained his involvement in POF studies and gave us an overview of a normally functioning ovarian system and the theories on the POF system. Dr. Nelson seems to be very committed to solving the POF mystery. He has been dedicated to it since 1988. He told us it is his life’s goal to have this figured out before he dies. For me, it was comforting to know that there is a Dr. out there, even if it is just one, that is focused on POF. I was a little discouraged knowing that research to this point has not revealed as much as we all would like.

After our meeting together, I met privately with Dr. Nelson, Vien and a team of doctors who went over my case and test results. Not all tests results are available immediately. Some take up to two months. The complete results will be forwarded to your personal doctor and Dr. Nelson or Vien will contact you when all of your test results are in.

I was then given copies of all my test results and recommended medication for hormone replacement. Dr. Nelson said that truly we should not call our condition premature ovarian failure but rather ovarian insufficiency. He also said that we should NOT be treated medically like a postmenopausal woman. WE ARE NOT POST MENOPAUSAL! This was a revelation to me.

Further information about the NIH study:

You will be required to pay for your own airfare there and back as well as any hotel stay. Shuttle service is provided by NIH from various airports and hotels. NIH provides all of your hospital stay, exams and medications free.

If you qualify for further studies, NIH will pay for ALL expenses, including your travel expenses and housing (airfare, hotel, etc.). Further stays at the NIH are outpatient. I qualified for two other studies that I am considering.

This is NOT a place you want to go with the grand illusion of a cure. This is about RESEARCH and helping ourselves and others find a treatment for or a prevention of POF. Please do not put yourself through the emotional trauma of going to the NIH with the idea that you will come home any different than you are physically. My trip caused me to feel a little more empowered and informed about my condition and gave me a sense of purpose in caring for my own health. I personally also feel it is EXTREMELY important for women with POF to help each other. In this case, participating in research is of great importance! They also run a myriad of tests…. Tests I can just about guarantee you your own doctor has not done in full. I know I felt confident leaving there with no medical stone unturned.

The food at the NIH is, well, for lack of a better word, yucky! It’s typical hospital food that is, at best, tolerable. There is a snack room on the hospital floor where you can help yourself to soda, juice, cereal and crackers when you want. There are two cafeterias, a coffee shop, mini-store and a gift shop. The hours are limited. There are also recreation programs available for free. We took a relaxation class and Suzanne took a jewelry making class. We also got free tickets for the "Tourmobile" in Washington D.C. which we took advantage of on Thursday. You can also leave in the evenings with a hospital pass is you’d like to go to a restaurant or whatever. We decided against this option.

You will need to bring comfortable clothes to wear during your stay (sweats, tennis shoes, etc.). You will also need to bring all of your toiletries, hair dryer, robe, slippers, etc. It’s much like summer camp.
If I can answer any questions for you at all, please don’t hesitate to e-mail me at pagel@thegrid.net

God Bless and Stay Healthy!
Crystal

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