Endless POFibilities -- April 2001

POFer Point-of-View

A Tale of Two POFers by Suzanne Graf

Although it was a beautiful June in Southern California in the year 2000, it could not have been darker for me. Once again I had been mistreated and outcast by another doctor with no hope of any other medical professional to assist me. I thought of those days when I was riding in the dark on a shuttle bus from BWI airport to a hotel in Bethesda, Maryland. It was by far one of the darkest and coldest nights I had visited yet the sunshine of hope was in my heart. Talk about contrast. I could not imagine back in June the journey that brought me to the National Institute of Health in January, 2001.

My name is Suzanne Graf and I was diagnosed with POF at age 20. As I write this, I am 35 ½ years old and living in the greater Los Angeles area. I was lucky by many accounts. I was referred to a reproductive endocrinologist by my mother’s doctor and therefore was diagnosed accurately and in a short amount of time compared to many of, what I like to call, my POF sisters. Knowing that my reproductive days were over before they began at such a young age made it easier for me, compared to most of you, to construct my life without the thought of ever being a parent. I was offered counseling which I turned down and had for 8 years the kindness and care of a very thoughtful and wonderful doctor that sadly met an untimely death due to cancer. Having children really isn’t on most people’s agenda at this age but knowing myself the way I do I never saw it as something that would be in my life so for this portion of the diagnosis I was comfortable. But I digress…

Late in 1999, an ill-fated POF support group meeting got me in touch with a woman named Crystal. She was the only person to return my emails after I was stood up by a group of women. She had moved out of the area but asked if I wanted to remain pen-pals. Having left the listserve of the POF support group on-line, I welcomed the fellowship of another POFer. Don’t get me wrong, the website served, for a long time, as a source of comfort and information but over time it turned out not to be the place for me. Crystal’s story was much different from mine yet we had the common thread of the agony and frustration that this condition brings. So for those of you who do not believe in God, a higher power or angels – I argue strongly. Crystal, for me, is an angel and a gift from God because I could not have gone to the NIH without her and I cannot imagine my life going forward without her friendship.

Back to my story – Crystal and I wrote back and forth for many months. As my sad story unfolded culminating in my dealings that June with an all too callous doctor in Newport Beach, she was there for me. Not that friends and family do not try but honestly unless you suffer the same, the understanding can only go so far. After I fired this doctor and wrote to the American Medical Association I was exhausted and disheartened once again. It was at this point that Crystal suggested the NIH. Of course I had known about it but never really considered it because of the distance mostly. The more we talked I realized that any information was better than what I had been getting all these years and the NIH seemed to be the place with the most information available. Also, the fact that they took two patients at a time made our plan easily fall into place. After all, we would have to be there with a stranger anyway – why not a stranger that I sort of knew through the internet? Ultimately, we scheduled the entire experience together. Crystal trusted me to make the travel arrangements and on a sunny cold Saturday morning in Burbank, California we met at the airport and got on a plane bound for the NIH. Needless to say we got along wonderfully and talked non-stop on that trip. (I’m sure we were flipping out the folks around us with the candor of our conversation but hey – maybe they learned something!)

Let me say in no uncertain terms that the NIH is not for everyone. But I will say that Dr. Nelson and his study need as many of us as possible and our cooperation. With that said, let me explain further. You will not leave cured or with any thoughts that a cure is forthcoming anytime soon. You will leave with a most comprehensive view of POF and the goals and hypothesis of Dr. Nelson’s study. You need to be strong of spirit and comfortable with your diagnosis. Being in a hospital amongst people with a large assortment of diseases and conditions in addition to being poked, prodded and x-rayed is not easy. Again, being there with Crystal was wonderful because we reminded each other of things when one forgot, we kept the mood as light as possible and we had someone to share our innermost thoughts and feelings with. All invaluable. I will also note that you will need to be off of all HRT for two full weeks prior to going. That was harder than I realized as I had been on steady HRT for 15 years. I forgot all about the nastiness of hotflashes and I never even thought that I would be so forgetful without my medications. It is humbling to know that I am physically so beholden to those pills. There are very few medical professionals with any understanding of POF in its entirety but let me say for the record that we are blessed that a man like Dr. Nelson has made our condition and the mystery around it his life’s work. We were treated with dignity and respect. I encourage all that are ready to please go to the NIH. We may not get easy answers even in our lifetime but think of the young women in your life and the as yet unborn POF sisters who might have it easier with the discoveries Dr. Nelson will make with our assistance.

Crystal and I had many conversations about the portrayals of the NIH experiences that have been circulating on the net. I appreciate everyone who shared because it did give me some information but I am a realist and would like to make a few points I don’t believe come across in other people’s stories. The food is less than outstanding, the beds are hospital beds and I in no way could imagine I was on vacation! No vacation I know ever involved gettiong 43 tubes of blood taken out of me! The research done at the NIH is serious but the staff is hard working and wonderful.

A few things to be prepared for:

1) You are presented with a calendar of tests upon arrival. You are expected to get yourself to the different parts of the hospital. You will not have your hand held because you are not "sick". You are expected to get up each day and put yourself together and be productive.

2) The tests are probably nothing you haven’t already done. The protocol changes so the tests that you are told about ahead of time may not be the ones you do when you arrive. They have deleted the stress blood test and the dry eye test. Currently they have added a visit to the dentist and a pelvic exam. (and no I never knew you could measure a clitoris or that there was valuable information in such a thing!)

3) Be prepared to tell your story and often. I found this the hardest part because after 15 years of this I am really ready to put away some experiences. However, this is a study of information and the more you can bring – the more value you can add to the study.

4) Give yourself a few days to recover after returning home. I felt like a Mac truck hit me. Emotional exhaustion is not for sissies! Be good to yourself and make sure you are surrounded with support and love. After all – you have spent several days facing an unpleasant fact of your life. It is no fun being reminded of all that you must deal with and all that you are not able to control.

The hardest yet most valuable portion of the stay is your time with Dr. Nelson on the last day. He explains in great detail the condition and where he is at in his research and what his current goals are. You get an overview of yourself and some test results. Then you get to ask questions and voice your opinions. Dr. Nelson truly wants to hear about our experiences and any thoughts you have are considered valuable. We talked about pamphlets in doctor’s offices, continuing education for doctors and PSAs on TV and radio (Public Service Announcements). I very much hope that someone will be able to put a face on this condition now that more and more women are being diagnosed with POF each year. Sadly for me, I had even more complications discovered at the end of my stay but lucky that Dr. Nelson arranged for two more consultations and some more tests that I am still waiting to hear about. Most of you will leave with medication and paperwork to continue to fill out for 3 months after you leave. And some of you will be asked to return to participate in double-blind studies and continuing research. I am sure I am not the first or the last to leave with nothing. I always hope for a better tomorrow and I will continue to challenge the medical community to work on being more educated and aware of our condition.

At the end of the day, I feel I did the right thing. I hope that someday I can at least live somewhat of a healthy life with the proper balance of medication. That is a seemingly simple but ever increasingly elusive goal. I will not lie down and I will not be quiet when it comes to the great injustices that the medical community commits on a daily basis against women. Needless medications being dispensed, needless hysterectomies and C-sections being performed and most of all the increasing cash business of donor egg brokering. It is all out of control. I strongly encourage all of you to talk to other women and educate them on hormones, how they work and what you know to be true. You might be surprised at the value you can add to other "normal" women’s lives by sharing your story. I have helped many women ask the right questions to their doctors just by telling them what I know and giving them books to read.

Finally, I want to thank Dr. Lawrence Nelson and Vien Vanderhoof and staff for their hard work and compassion. I thank Catherine Corps for founding the POF website which has helped me in so very many ways but most importantly leading me to my friend and #1 POF sister Crystal. I thank you Crystal for sharing your wit, intelligence and integrity with me. Despite living with POF, I truly feel blessed.

My Experience at the NIH