Thursday, March 31, 2011

"Frozen Angels"

I was browsing through the Netflix library yesterday and came across a documentary about the development of reproductive technology in Los Angeles. "Frozen Angels" gives viewers multiple perspectives of people involved in the art of unconventional baby-making. The film follows a gestational surrogate & her recipient couple, a young man born with help from a Nobel Prize sperm donor (AKA "the Designer Baby"), a blonde haired/blue eyed egg donor (AKA the poster girl), several fertility specialists, and Bill Handel (a radio personality, and father of twin girls who were born through gender selection IVF). The film also examines ethical dilemmas with respect to genetic manipulation, and using egg donors/surrogates.

Kari, the egg donor, is definitely someone I can relate to. She has donated her eggs several times, and now receives up to $8000 for each donation. Described by the clinic as the "ideal donor," it seemed as though she was quickly becoming a hot commodity to couples seeking donors. The clinic she was involved with seemed much less sensitive to her experience as a donor in comparison to Shady Grove. I don't feel like she was as prepared for experiencing side effects from the hormones, and her clinic was more concerned with her making money than being safe and healthy through the process. To put it bluntly, she was treated somewhat like a prostitute in my opinion. It seemed more like she was going through a business transaction, rather than giving a gift as I like to put it. I truly hope that my experience will be much different.

Doron, the product of a Nobel Prize sperm donor, gives a great perspective into life as a donor child. Having an IQ of 180, he definitely takes after his biological father - just as his mother wanted. When asked how he feels about his sperm donor "father," he gave an answer that I thought was very interesting. His donor is just another person in the world, not his Dad, and that is all. I think this is a great way for a person to think about their donor. The donor gives a small piece of themselves for a child to be created, and that is all. I'll be in no way, shape, or form a "mother" to my potential donor child - and that's okay. Being able to give such a huge gift is a gift to me in itself, and I don't desire anything more.

Seeing Amy & Steve, the parents who receive a child from a gestational carrier, was particularly touching. After 15 years of failed IVF treatments, they made the decision to utilize a surrogate to carry their biological child. I can't imagine the pain they felt throughout those - gulp - 15 years, but seeing them with their baby was truly amazing. I went through about half a box of tissues... yeah, I'm a dork. I hope that my gift makes even a fraction of this impact on the lives of a couple struggling to become parents.

There is a lot more covered in the film than I have described here, but being out of the realm of my experience, I'll leave my description short and sweet. If you have Netflix, the movie is available for instant streaming - I highly recommend watching it.

Tuesday, March 29, 2011

Baby steps

I just got back from my first appointment with my social worker, which was pretty interesting. The whole meeting felt a little bit like a job interview, so I was somewhat nervous. I definitely understand why Shady Grove takes the extra effort to make sure they accept only the most responsible donors, and makes them aware of the magnitude of their decision to donate. I never thought this experience would be so complicated! But almost 3 months into the egg donation process, I am truly glad that I have taken the time to understand what I'm getting myself into.

The social worker spoke with me for almost an hour about things I may experience during and after the egg donation. She basically brought up a few hypothetical scenarios, and asked me how I would feel or react. For example, she asked how I would feel if the recipient couple wanted to meet me, and how I would react if they needed some kind of medical help in the future (like if their child needs a biological relative to donate bone marrow in the case of leukemia). I've thought a lot in the past few months about these type of scenarios, so it was easy to open up and tell her how I was feeling. The last step I have to take is to meet with her once again - with my boyfriend. I hope he's ready!

This whole process is feeling a little more real this morning. It's not out of the realm of possibility that someone could choose me as a donor within the next few months! This idea really sunk today, and I'm thinking about the adjustments in my life I'll have to make. Abstinence, injections, cutting back on physical activities, daily trips to the clinic... it's a lot to deal with. I'm an avid runner, and have a few team races scheduled in the upcoming months that I would hate to back out of, but it's a sacrifice I'm willing to make. The risk of ovarian torsion rises with physical activity and contact sports, so I'll have to hang out on the sidelines for a while. For now, it's back to waiting...

Tuesday, March 22, 2011

I've got a new favorite pair of jeans

It's official - I'm not psychotic, I have acceptable genes, and no infectious diseases! Hooray! I got "the call" from Shady Grove a week ahead of schedule giving me permission to take the next step in egg donation. I immediately made a call to my social worker to set up an appointment with her. I'll meet with her twice - once alone, and once with my boyfriend - and then I'll enter the donor database. I'm not really sure exactly what we'll discuss in our meetings, but I'm assuming we'll talk about the emotional aspect of egg donation. I am so relieved to have made this huge step... more so that my genetics test came back without any concerns. Big thanks to my Mom and Dad!

Sunday, March 20, 2011

This is your brain on eggs:

It's been almost 2 weeks since orientation now, and still no call back. Most of my friends know that I absolutely HATE waiting for surprises. This year I convinced my boyfriend to let me open all of my gifts a full week before Christmas... I know, I have a problem. Needless to say, the suspense is killing me. I know Nurse Connors told me to expect results back in 3 weeks, but I'm really hoping I get a little relief early.

This waiting period has given me a lot of time to think about what I'm hopefully about to do. Lately, I've been thinking about what couples look for in a donor. Is it hair color? Height? Religion? Athleticism? Or do they focus in on the essay portion of the application? What makes ME a good donor? I'm not totally sure, and I would love to get some feedback from women who have looked through the database of donors. If I needed to resort to using donor eggs, I think I would want to use eggs from a woman who looked like me. The essay portion would also weigh in on my choice - Personality definitely matters. Brains definitely matter to me too, so I would definitely take academic background into consideration.

I'm also curious to hear what recipient couples would be curious to know about their donors that isn't covered in the application. Would they want more details about what I look like? My IQ? My personal style? Would they want to see a current picture of me, instead of just my baby pictures? I would personally be interested to know these things... I know this issue is pretty controversial, but I'm also curious to know whether recipient couples would be interested in meeting their donor in person. Part of me thinks it shouldn't really matter what kind of person is donating their eggs, so why bother meeting them? Sure, their kid is getting my DNA, but they're the ones responsible for really molding their child into the person he or she will become - not me. I'm not sure if I would want to meet my donor if I were in the recipients' shoes for privacy reasons, but I would definitely be curious as to who she really is. I appreciate the anonymity of the process, and I don't think I would ever want to meet whoever gets my eggs. I'm donating my eggs, and nothing more, and that in itself is a gift.

Wednesday, March 16, 2011

Staring doesn't make it boil faster

It's been a week since my Donor Day orientation, and I'm doing my best to restrain myself from checking my phone every 5 minutes for missed calls. I'm feeling confident that my MMPI scored fine, because I haven't received a phone call for a disqualification notification. Hopefully I'll hear back with good news with regards to the genetic tests within the next two weeks so I can schedule my appointments with the social worker. This will be the last step I have to take before I officially enter the donor database! The suspense is definitely weighing down on me.

I've been thinking a lot about the genetic tests this past week, so I did a little research about the diseases that Shady Grove tests for. It's amazing to me that ANY baby is born completely healthy with the multitude of genetic diseases that exist. Some of the conditions are pretty debilitation, or even life threatening. I can't imagine having any of these issues myself, or putting a child at risk of being born with one if I happen to be a carrier of the gene. I'll do my best to decipher all of the medical jargon...

1. Beta Thalassemia is a blood disorder that causes the body to make an abnormal form of hemoglobin. Hemoglobin is a protein that gives red blood cells their distinct color, and enables the cells to carry oxygen. Without normal hemoglobin, a person will develop anemia (lowered capacity for RBC's to carry oxygen to tissues/organs) and may experience hemolysis (premature breakdown of RBC's). This disease can be life threatening, but can be treated with blood transfusions and bone marrow transplants.

2. Bloom Syndrome is a disease that commonly affects individuals of Jewish descent. These individuals have "breaks" in their chromosomes, which causes many physical deformities. The most noticeable symptoms include a red facial rash when exposed to sunlight, narrow face, and short stature. They often have a higher risk for leukemia, other types of cancer, and life threatening infections.

3. Canavan Disease is a metabolic disorder in which an individual lacks an enzyme to break down aspartic acid. This can lead to deterioration of white matter in the brain, leading to severe mental retardation. While some individuals are able to live into young adulthood with this disorder, most die within 18 months of age. The MRI pictured shows significant damage within the brain, in comparison to the normal brain.

4. Cystic Fibrosis is a disease that causes a build up of abnormally thick mucus in the lungs and digestive system. People with CF have a persistent cough and abnormal bowel function, as their body is unable to rid itself of the mucus. The symptoms of CF can be alleviated with respiratory therapies, and diet regulation, but most die by the age of 35 from respiratory complications. I had a childhood friend pass away from CF at age 15, and I know how hard it was to see him & his family endure the struggles associated with his disease.

5. Familial Dysautonomia affects the development of nerves, and commonly affects people of Jewish descent. This disease has a variety of symptoms associated with the central nervous system, and only half of sufferers live to the age of 30.

6. Fanconi Anemia Type C causes individuals to have a lower levels of white blood cells, red blood cells, and platelets (clotting agents). People with this condition have a higher risk of developing leukemia, but are typically able to live normal lives with blood transfusions/bone marrow transplants.

7. Gaucher Disease is yet another metabolic disease that typically affects people of Jewish descent. Individuals lack an enzyme, which causes a toxic build up of substances in the liver, spleen, and bone marrow, thus preventing them from functioning normally. Enzyme replacement therapy has extended the lives of those affected by this disease, but they may also need bone marrow transplants at some point in their lives.

8. Tay Sachs is a disease of the nervous system that is particularly devastating. 1 in 27 people of Jewish descent carries the gene, and those affected typically die by age 5. Tay Sachs causes deafness, blindness, decreased muscle tone, dementia, seizures, and even paralysis. Currently there is no treatment.

9. Mucilipidosis is a genetic disorder that causes mental retardation and progressive loss of vision. People with this disease are unable to break down carbohydrates and lipids normally, which causes a build-up of intermediate substances. Accumulation of the substances can cause organ damage, corneal clouding, and cognitive delays.

10. Niemann-Pick Disease causes lipids (fats) to accumulate in the liver, spleen, and brain. This progressively causes motor skills to decrease, seizures, tremors, intellectual decline, and other neurological issues. Severe cases typically cause death by age 3, but those with mild cases may survive to the age of 20.

11. Sickle Cell Anemia causes red blood cells to form an abnormal crescent shape due to an abnormal form of hemoglobin. The fragile RBC's can't deliver adequate amounts of oxygen to tissues of the body, and can easily clot in small blood vessels. Sickle cell can be treated with dialysis and blood transfusions, but may still be life threatening.

12. Spinal Muscular Atrophy causes muscle degeneration which leads to poor muscle tone, breathing/feeding issues, and progressive muscle weakness. Most individuals only live to 2-3 years of age because of the lack of treatment for this fast acting disease.

13. Fragile X is caused by a defective gene located on the X chromosome, and can affect both men and women. Some with this disease often suffer mental retardation, or experience symptoms similar to those with autism. They often very tall, have long faces, and low muscle tone. Men with Fragile X are typically more drastically affected in comparison to women with the disease because they have only one X chromosome. You can see the "fragile site" located at the bottom of the chromosome, which appears to have broken off.

If I was a carrier for any of these genes, I would definitely want to know. However, awareness of that fact could bring a new set of challenges down the road when I choose to start my own family. It was emotionally painful just to get through this post after seeing photos of people affected with these diseases, and I know I would never want to put a child through that struggle. For now, I'm hoping on good genes!

Thursday, March 10, 2011

Protecting The Nest

During Donor Day, Nurse Connors addressed one of my biggest concerns about donating my eggs - ovarian hyperstimulation syndrome (OHSS). I was relieved to hear that only a single woman experienced severe hyperstim at Shady Grove during her time at the clinic. Whew, that's a relief! However, in her next breath I was made aware of another risk even scarier than OHSS - ovarian torsion. Ovarian torsion is basically when an ovary twists in a way that cuts off it's blood supply, which can lead to tissue death or necrosis. After taking the hormones that prepare a woman's body for donation, the follicles of the ovary grow exponentially large in a short amount of time. As a result, the enlarged ovary obviously needs to shift around in the body to get a little more comfortable. If it happens to be pushed in a certain way and twist over on itself, the ovary is in deep trouble. The good news is that if it is caught in time, the ovary can be saved with surgical repair. If a significant amount of necrosis occurs, it may be necessary to remove the ovary. On the bright side, a woman can still become pregnant with one functioning ovary, and torsion usually only happens to a single ovary at a time. Still, it's a pretty big risk to take on. Ironically, something that is intended to increase another woman's fertility could potentially decrease my own.

I've had a lot of people ask if egg donation could potentially affect my fertility. I guess when you consider risks like ovarian torsion, the answer is in the grayer area of yes... Yes the risk exists, I get that. If you were to ask me if egg donation could affect my chances of becoming a parent, the answer is clearly a big NO. Lets say hypothetically I unfortunately experience ovarian torsion, lose my ovaries, or because of the procedure I am consequently unable to get my ovulation cycle back into gear. Would I be devastated by the thought of being unable to have a biological child of my own? Absolutely, but because of these tragic events, I would be able to adopt a child who otherwise wouldn't have been. I find that when I look at the bigger picture with respect to these "risks," I see more opportunity for wonderful things to happen.

Tuesday, March 8, 2011

Let's Talk Hormones!

I'm going to do my best to follow in the footsteps of my health class teacher to explain the ovarian cycle and how it relates to egg donation. The chart above is a great illustration of what really goes on with respect to hormones. As you can see, there are four main hormones that control the female reproductive system. Follicle Stimulating Hormone(or FSH) stimulates the growth of immature follicles in the ovary. The follicle is an oval shaped structure, filled with fluid and cells, where a single oocyte (or egg) develops. The second hormone is called Luteinizing Hormone (or LH), which triggers ovulation when the egg reaches maturity. As you can see on the chart, there is a huge surge of LH in the middle of the ovarian cycle, which is when the egg leaves the ovary and the woman is able to get pregnant. The third hormone is Estrogen, which is responsible for overall regulation of the female reproductive cycle. Finally, we have Progesterone, which is responsible for preparing the female body for pregnancy. Progesterone levels rise after ovulation, and build up the wall of the uterus to make it more suitable to an embryo if it is fertilized. If a pregnancy does not occur, progesterone levels drop and the woman gets her punctuation. Simple enough right?

When I'm chosen by a recipient couple to donate my eggs, I'll have to take two different injections to prepare my ovaries to develop multiple follicles. The results of my ultrasound indicated that I have 17 follicles available, which makes me a good candidate to donate eggs. (Acceptable donors need to have between 15 and 30 follicles.)By taking shots of pure FSH, marketed under the names Follistim and Gonal-F, my ovaries will grow many more follicles and mature eggs than it normally would. I'm expecting to take a shot of Gonal-F daily, injected by yours truly, for about 2 weeks. During that time, I'll have to make trips out to Shady Grove every 1-3 days so we can monitor the amount & size of my growing follicles. This gives the clinic an idea as to how many eggs I'll be able to donate. There may be some physical discomfort during this phase... If you can imagine, the normal follicle is about 1 centimeter in diameter and only one matures to this size during normal ovulation. However, if I have SEVENTEEN of these babies growing to 1cm each, making my ovary into a huge raspberry-like structure, it's pretty big! When my follicles reach the size the doctor's feel is adequate, I'll give myself a single intramuscular shot in the bum of pure LH, marketed under the names Lupron or Luveris. This triggers my body to plan to release the eggs, and 36 hours after this "trigger shot" I'll be in the stirrups for retrieval.

Side note about my ovarian cyst: Nurse Connors told me that my estrogen levels were slightly higher than average, probably due to the cyst. However, she said I shouldn't be concerned with it's presence, because it is so tiny and they typically go away on their own. A follicle that is larger than normal is deemed a cyst... I think it has to be over 1 centimeters in diameter. Mine is only 1.3cm - pretty tiny. So as for now I'm in the clear!

Monday, March 7, 2011

Donor Day Orientation - Over...Easy!

My day started bright and early at 8am to get ready for my Donor Day orientation at Shady Grove's Rockville location. I set myself up with a GPS, and my brand new XM radio for a little entertainment during the hour and a half drive. My heart was pounding the whole way, and I'm glad I wore a sleeveless top because I would have been drenched in sweat by the time I arrived. I signed in and settled into the cozy waiting room while nurses and doctors buzzed by. After a few minutes, I was greeted by the lovely Margaret Connors, RN., and ushered into her office. Nurse Connors started off by asking me why I chose to apply to the donor program. I explained how I had considered the idea of donating eggs a few years ago, and finally decided to muster up the courage to take on this journey. Maybe I should have told her about the blog... She then told me a little bit about SG's history, and how they have become a leader in the world of IVF with one of the highest number of IVF cycles completed per year & one of the highest percentage of successful births. People from ALL over the world have come to SG because of their reputation, especially those from the UK and Canada. People living in countries who have nationalized health care have to wait about 4 years to utilize IVF with donor eggs! It is illegal for women to receive compensation for their eggs in the UK, so there is a huge shortage of donors compared to the US. It's easy to consider the fact that few altruistic women exist who would go through this lengthy, risky process with zero compensation. I have read a few accounts of British women who have traveled to the US in order to donate to take advantage of the financial perks. They make it sound so scandalous!
Next we made a paperwork exchange - my huge packet for her MMPI (AKA the personality test, woo hoo!). We reviewed my family/medical history, and I shared my career goals and status in school. She left me to start filling out the 567 question MMPI while I waited for the lab to finish up with the other two donor day girls. The test is pretty tedious, and consists of true false questions that seem pretty random. They range from asking if you love your parents, to if you hear voices, to questions of morality, to if you get embarrassed talking about sex (you can guess my answer to that one). Any hint of mental instability will disqualify donors from the program obviously. A social worker, who works independently of Shady Grove, evaluates the MMPI's and will (hopefully!) call me to schedule two future appointments. The first with me alone, to discuss the emotional implications of egg donation, and the second with my boyfriend & me together to make sure he is on-board with the process as well.

After I got through about 40 questions, the lab technician came to whisk me away. My favorite two lab experiences - giving blood (7 vials this time! ouch) and peeing in a cup - were overshadowed by the genetics test. Another thing that can disqualify a donor is testing positive for a marker for about 13 genetic diseases, meaning that they are a carrier for the undesirable gene. I thought initially that I would be simply swabbed on the cheek with a Q-tip, but I was very wrong. I had to spit into a tube, which under normal circumstances wouldn't seem like an unconquerable feat. However, when you aren't allowed to drink for 30 minutes and have to be Chapstick-less, it is pretty difficult to fill up a test tube. The lab tech suggested I think about lemons, which actually helped. After I finished this VERY classy test, I went into another room with the other 2 prospective donors to continue with the MMPI.

I said hi to the girls, and was thrilled when I was greeted with a water bottle by Nurse Connors. We listened to Nurse Connors describe how the donor process works, options for the IVF couples (which I've described in previous posts), and what hormones we'll be taking if we're chosen to donate. I'll go into detail on the hormone talk in the future after I do a little more research. We all learn basic reproductive education in school during health class, but I seriously learned a lot about the female anatomy in this short lecture. I remember thinking at one point how ANYONE gets pregnant with the level of complexity involved in conceiving a child. It's fascinating to me. After the chat, me and the ladies had a pizza party lunch and finally completed our MMPI's while Nurse Connors took a break.

Nurse Connors came back about 45 minutes later with a bag full of syringes and training vials...GULP. It became obvious that this was the moment I have been dreading - Injection Training! We started off by checking out 2 different sizes of needles we'll be working with, and the basics of handling a needle. We learned how to measure our dosage of medicine, how to draw up the liquid, where to inject, and how to combine medicines that require mixing. After we all got this down, we did a test. We had to get a certain dosage of water into our needles correctly without any help. What happened next almost made the girl next to me cry and run out the door. In order to pass our test, we had to give ourselves the injection of water in our stomachs. Truly, it was a piece of cake! I didn't even give myself an opportunity to think about it... I just stabbed it in a pushed the plunger. It was no worse than a pinch. As for the other contestant... it took the poor girl about 10 minutes of convincing and I still thought she was going to lose it. This experience definitely calmed my fear of giving myself an injection.

We ended the day by signing one final consent form. If all goes well, I'll get a call back within 3 weeks saying that my genetics/infection/MMPI tests were all great. The next step is scheduling my social work visits, which will be nothing compared to donor day, and I'll get my profile published on the database! Who knew there would be so much WAITING involved in this process?

Saturday, March 5, 2011

Can't I just take a pill?... Please?

I got a pretty extensive packet of paperwork earlier this week, which describes the itinerary for my 5 hour day of orientation on Monday. I filled out yet ANOTHER questionnaire about my medical/family history, and a W-9 tax form. Next I filled out the "Risk Factor Questionnaire," which went into a little more detail about my sex life that I would have liked. I guess I need to get used to people asking about my reproductive organs on a daily basis... The information packet, which was about 20 pages long, answered a lot of lingering questions I had about the donation process. In addition to the Shared Risk Program, Shady Grove offers couples an opportunity to decrease the cost of IVF by opting for a Shared Donor Egg agreement. Basically up to 3 women share the cost of using one donor egg cycle by splitting the eggs retrieved. In addition to relieving some of the financial burden, most (if not all) eggs are used for IVF as opposed to being donated to research or discarded. This definitely makes me even more confident that I am making a good call for choosing SG as my first choice clinic.

One thing in particular has been on my mind about orientation - Injection Training. As part of my homework, I had to watch a few videos. If you can handle it, watch the injection videos on Lupron and HCG. I'm not positive, but I'm pretty sure these are the hormones I'll be taking at some point. I'm curious to see exactly how injection training is gonna go... do I have to practice?! I'm sure once I get over the initial shock of actually giving myself the shot it'll be a piece of cake, but that doesn't make me any less nervous. I'm accepting nurse applications by the way...