Sunday, April 3, 2016

The Scariest Risks of Egg Donation

This is a common topic that is asked by egg donors either during the application process, or worse, in the middle of doing a donation and Intended Parents have already invested thousands of dollars to run medical screening testing on them when they become scared off by the list of things mentioned by the IVF clinic. The IVF clinic is required to go over medical risks in order so that every patient signs the consent form acknowledging that this has been reviewed. All items must be covered and they must also mention every theorized item in the extremely rare case it could happen so they are legally covered that it was disclosed. 

Consider this... when you go into a body art shop to get a piercing, you expect it to be a simple procedure, yet the shop won't perform the piercing on you until you sign their consent form. The last time I was in one of these shops for my sister's belly-button piercing, she signed a consent acknowledging the following risks: infection, infectious disease (such as HIV, even though they follow the right procedures to avoid this ever from happening), amputation, and even death! I guess if you allow an infection to progress untreated, it could eventually lead to amputation and death, right? You would never die directly from a piercing unless they pierced your heart!

The risk of death during an IVF cycle is the same - if you have any minor side effects happen afterward but you don't take the responsibility to get it checked or treated, the final result could end in death. So the IVF clinic cannot ever promise you that there is zero chance of it happening. But there is no conceivable way I can think of where an IVF cycle could cause you to die from it directly - this isn't heart surgery either. Actually, in the medical field, this procedure is considered relatively low-risk. So how low-risk is it? 

One of the biggest concerns that doctors could only theorize back when I was an egg donor in 2008 was the risk of cancer, and because IVF had been around only 30 years then, there were no long-term studies available yet. I had to accept the risk of theorized cancer back then. Fortunately, for anyone reading this now, studies have finally come out disproving that fertility drugs can cause cancer. Hooray! 

Szalavitz, Maia. "Putting to Rest Fears that IVF May Be Linked to Cancer." Time, 08 Dec 2010. Web.

Iacurci, Jenna. "Do fertility drugs cause cancer? Researchers say no." Parent Herald, 03 Apr 2014. Web.

The most common risks of egg donation is pregnancy, infection, and ovarian hyperstimulation syndrome (OHSS), which I explain in this blog post. I've heard the risk of OHSS quoted by different clinics anywhere from 5% up to 15%, it really depends more on the clinic itself. If you haven't read about OHSS, make sure you do. It's very manageable and can be prevented from reaching a severe case if you understand what to look for.

As for the rest of the more severe but rare issues, I found another study done in Australia published in the Oxford Journal regarding statistics of complications from IVF. Keep in mind, this study was done over 15 years ago, and IVF has advanced further since then with more advanced methods, so these stats may be even lower today. Below are some of the points:
  • Death has never occurred as a side effect in any of the 29,700 IVF studied cases. Out of all these cases, 2 deaths occurred afterward - to women within 3 months after giving birth to their IVF children because of pregnancy/labor complications.
  • In the case of OHSS, it's normally only mild to moderate symptoms that are experienced, which do not require hospitalization. Out of 10,125 IVF cycles, OHSS needing hospital care occurred in 0.7% of cycles.
  • Complications of follicle puncture involving bleeding occurred in 0.5% of cycles.
  • Post-operative infections requiring antibiotics or surgical management occurred in 0.3% of cycles.
  • Similar findings came from a retrospective analysis of 2,495 IVF cycles at a single Dutch clinic (Roest et al., 1996). Hospital admission was required in 0.7% of cycles due to severe OHSS; adnexal torsion occurred in two patients, and both required ovariectomy; and post-operative infection requiring hospital admission occurred in 0.3% of cycles.
  • Neither of these studies reported fatal complications of IVF treatment.
Venn, Alison, et al. "Mortality in a cohort of IVF patients." Oxford Journals: Hum. Reprod. 16 (12): 2691-2696. European Society of Human Reproduction and Embryology, 02 Feb 2001. Web.

Some less severe side effects of the egg retrieval are often times dehydration and constipation. I think the water that is being drawn to your abdomen causing the bloating, especially during OHSS, is being pulled from your bloodstream so thus dehydration and lack of fluid to keep your bowels dry. That's why we instruct donors to drink lots of Gatorade and coconut water to stay hydrated with electrolytes, and also high protein diet is always directed by IVF nurses. 

Another side effect for some could be nausea from the anesthesia. Some mixtures just don't work well with some bodies, like myself at my first donation - I could not keep anything down for about 36 hours after my retrieval. I expressed that concern at my next donation after that and the anesthesiologist gave me a different cocktail plus a motion sickness patch behind the ear. I did much better that time, like taking a nap and feeling good afterward. This is pretty rare too and I've only seen it in a dozen other donors out of the more than 1,500 cycles we've done at AED.

So there you have it. No responsible IVF doctor or agency can promise you a zero chance of the risks happening, but there is certainly a less than 1% chance that it ever could. So what happens if in the very rare case it does happen to you? 

Every egg donor agency requires the Intended Parents to purchase a Donor Medical Insurance policy, which becomes the donor's primary insurance during the donation and will cover 100% of medical costs related to the egg donation within 3 months of the retrieval, up to the amount of $250,000. If you suspect you are experiencing side effects, it's important to call the IVF nurses immediately to see if they can bring you back in for a follow up check or to treat the symptoms. If you traveled for the donation and already returned home, or it's after hours and the IVF clinic is no longer open, call the phone number on the insurance card given to you by your Case Manager to ask which hospital nearest you is in-network and go there for emergency care. Print out the card to take with you to submit as your only insurance - do NOT ever use your own insurance or this IVF insurance cannot process your claim. It's better to have the entire bill sent to you and then submit to the IVF insurance filed as a claim. We do help each donor with the claims process - actually it's required, so be sure to stay in constant communication with us if you suspect anything.

Sunday, October 28, 2012

Testing Fertility Levels

When a donor goes in for screening, one of the most common tests that will be performed are your fertility hormone levels to ensure they are where they should be. Here are the items that could be requested, what they mean, and their correlating numbers. If any female is simply visiting this blog and curious to know what her fertility levels are for any reason, the items below are what you will want to discuss with your OB/GYN to order for you.

FSH (follicle-stimulating hormone)

This is a very crucial test to determine how hard your body works to ovulate an egg each month. What makes this one a little challenging is that it can only be read on Day 3 of your menses. If this hormone is not read within this particular window of time, it will change quickly and it could return a number that does not look good. If a person doesn't take their instruction seriously enough to report the moment they started their period, and they go in to take this test with the wrong timing, it may just disqualify them as a fertile candidate, or cause a one-month delay to wait for their next period to arrive just to gather this result. Another challenge that some clinics pose is that they don't like to draw this test when a person is on BCPs, so they must stop for one month and have a natural menses cycle and then draw at the next one - they can resume taking BCPs after the blood sample is drawn.

Here is a good analogy I like to use, provided by a Chicago doctor's blog explaining the role of FSH... think of it like fuel for a car. A good car requires minimal fuel to get going, whereas an older model may require you to essentially "floor it" and yet the car is still barely able to reach high speed by the time you need to merge onto the highway. The higher the FSH number is on your test result, the harder your body is working to produce an egg for ovulation.

The number range should start >4.0, and for donor candidates, most IVF clinics ideally like to see this number <9.0. For any woman just trying to get pregnant on their own, it's still possible to get pregnant with an FSH level up to 12.0, especially if using fertility medication, but it could still be a challenge. The body will continuously work harder to produce this hormone, and women approaching menopause can see levels above 40.0.

Side Note: If you were to test this value while on BCPs, the value should be <1.0. The estrogen supplied by BCPs suppress the body from making this hormone so that the ovaries cannot stimulate an egg to ovulate. Which brings us to the next test...

E2 (estradiol/estrogen)

This is typically tested in conjunction with FSH because estradiol directly affects FSH levels. To know that the FSH levels are accurate, the estradiol should be <50. If it's higher, then it could be suppressing the FSH level, masking what the true reading should be and would be considered invalid. You want to see a low estradiol reading in order to know that your FSH results are more accurate.

This is why many clinics will have a woman stop taking BCPs for one month, just to make sure it doesn't tamper with the FSH results if there is still too much estradiol in her body by Day 3 testing.

Side Note: On an NYU doctor's blog, he mentioned there is a theory in the fertility field that a woman constantly producing a high FSH level could be causing her ovaries to stop responding to it all together, which may explain why some women don't have any response to fertility medication trying to deliver high doses of FSH to help produce eggs. He says it's not been studied or proven, but it would make an interesting case to the benefit of long-term BCP use if it turns out to be fact.

Antral Follicle Count

Okay, this is not a hormone test, but is a vaginal ultrasound typically ordered alongside the Day 3 hormone tests to observe what the ovaries look like. The female body produces a steady average number of follicles (each containing an egg) every menstrual cycle. The number of follicles seen on the ultrasound can provide a prediction of how many eggs the doctor may be able to stimulate and retrieve. If the number is very low (for Asians, <8) this could be a sign of diminished ovarian reserve and egg quality is also likely to be poor. Ideally, the total number of follicles from both ovaries should be 15 or greater. Again, the Chicago IVF doctor's blog does a great job to explain this in detail.

Side Note: Each month, any extra follicles that didn't ovulate will discard the extra immature eggs and grow a whole new set the next month. This is why fertility is not affected by donating these eggs. Read my previous blog post for more detail.

AMH (Anti-Mullerian Hormone)

This is a hormone test that we see IVF clinics more commonly substituting for the ultrasound these days. AMH is constant and can be tested at anytime of the menstrual cycle, making it one of the most convenient tests. This hormone is released by all the microscopic follicles that have not been released by the ovaries yet, making this test a measure of your possible ovarian reserve (how many eggs you potentially have left in your fertile life). The higher this number is, the better fertile state your ovaries are in.

As a donor candidate, ideally the AMH level should be >1.0, meaning her body is fertile with ample number of eggs to last her a good while. A higher number tends to correlate with higher antral follicles and more eggs at a retrieval. If it is >3.0, donors tend to also stimulate much more easily to fertility medication and also indicates they could be at higher risk for OHSS after their donation. 

I have seen one donor's value as high as 11.0, and the doctor made sure to start her on a low dose of medication and asked us to arrange for her to stay in town (it was an out-of-state cycle) extra days after her retrieval to ensure she was treated for inevitable OHSS. She did retrieve over 30 eggs at her retrieval, and she did have OHSS with close monitoring and treatment by the IVF doctor to return home safely. 

Side Note: Many clinics are not even using FSH, E2, or ultrasounds to screen their donors anymore, but simply relying on AMH since it tends to be more accurate, conveniently can be tested anytime, and still tells a lot of the fertility story. Here is a final link to the Chicago IVF doctor's blog explaining it and an interpretation of the value ranges in detail.

Determining Egg Quality

Unfortunately, this cannot be tested prior to the egg retrieval. This is the one risk all Intended Parents must take, especially with first time donors. Even if all your testing goes smoothly, there is still a small possibility that the egg quality is poor and cannot achieve pregnancy. We will know a donor's egg quality once we receive fertilization results back, as well as how many embryos survived until the blastocyst stage (Day 5 after retrieval). Granted, it's no longer only the egg quality that will be reflected in these final results, there are other factors at play too, but it does normally help to provide a better overall picture.

In Summary...

I personally would recommend having all 4 values tested (your doctor may also bring up a 5th one, LH or leutenizing hormone, but it's sort of similar to E2 where it's just to make sure the FSH value is accurate, and not really necessary unless you need a really good picture of what's going on if experiencing infertility). If you are especially nearing the age of 30 and are still postponing having children, it's a good idea to check these values to make sure you're not blindly running out of time. If you don't have insurance, I understand these tests could be a bit expensive (~$75 each hormone test, ~$175 for ultrasound) to pay out of pocket, so if you had to ask your OB/GYN to write you a lab order for only one, make it the AMH test. However, seeing the whole picture with just the 3 hormone tests alone will be very enlightening too.

Wednesday, October 24, 2012

Egg Donation in the Media

Why is it that the topic of egg donation seems to be taboo? Everyone is nervous to talk about it with friends and family, especially us Asians. Here is a list of reasons why I think people feel so uncertain about it:
  • It's never discussed in the media openly.
  • Whenever you hear it mentioned on TV, it's always part of a negative joke. This came from an episode of NBC's Community. FEMALE: "I was thinking of selling my eggs." MALE: "I'll give you some money, hold onto your eggs." It made me shudder to hear the word "sell." And then again when the response made it sound like it was something she will lose permanently. It was so misguiding, but that's what gets planted into our heads too often.
  • In China and India, even the topic of adoption is a taboo subject. Surrogacy in China is illegal. Egg donation in Japan is illegal (making Japanese donors some of the toughest to recruit). 
  • The Vatican decided that egg donation is immoral. Who decided? A group of men who gave up the right to have children themselves. To them, if you can't do it naturally without science, you shouldn't have children at all. However, the Jewish faith accepts egg donation, so long as the egg donor herself is Jewish since the faith is passed to the child through the maternal line.
  • Egg donors receive money for it - "too much" money. After reading my blog, you might understand that without some compensation for the inconvenience, time, and effort involved, finding any altruistic volunteers is too difficult. Canada, Australia, and England do not compensate donors and so having children via egg donation is near impossible there. In our country, there is a shortage of bone marrow and kidney donors - if they offered money, wouldn't you reconsider registering? There are some ads that people may see for egg donors offering $20,000 or $30,000 for one donation from an ivy league female with superstar physique. Most of these ads are actually ploys from unmonitored agencies to recruit donors and puts a bad image on the rest of the industry. Legitimate agencies who are members of the American Society for Reproductive Medicine have a max limit of compensating donors $10,000.
  • "We don't know anyone who has ever needed to use an egg donor." That's because those who have, never discuss it openly. They may not even let their own families know about it. In some cases, they may not even let their own child know it. You will probably never be privileged to hear this from anyone unless they are extremely open people.
I can tell you that chances are more likely that you have run into families who were built using an egg or sperm donor. It's a bit more common than you may think. Especially in Hollywood.

Let me make my case... fertility exponentially decreases once you hit the age of 35. Most women in their 40's have less than a 5% chance to conceive per attempt they make, even with advanced IVF technology. But with an egg donor, their chances can become anywhere from 55%-87% depending on the clinic they select. At the transfer, the average number of embryos implanted are 2 to give a better chance of at least one latching into the uterus.

So, can you think of any women who have ever had TWINS in their 40's, particularly in Hollywood? Unless they planned ahead and froze their own eggs, I would make a strong bet that their children are conceived via an egg donor. These idols are causing a huge disservice to their young fans who believe that if they got pregnant with twins in their 40's, then surely they can wait too. WRONG! Every time I hear another story in the tabloids that an elder Hollywood star is expecting twins, I and all the other fertility professionals immediately know the truth.

IVF is currently a growing industry in the US because more and more people decide to put children on hold and get their life settled before family building. Women in our country are not informed enough that our reproductive clocks are winding down. It's just not something we talk about over the water cooler or out at lunch.

Saturday, January 29, 2011

Telling the Family

I am not unlike half of the Asian donors in AED who prefer not to tell their family that they donated their eggs. You can read in one of my early posts my reasons that I didn't want to tell my Korean mother especially, so therefore I kept it from the rest of my family too. My support came from my husband and a couple of select friends I trusted to keep this secret. 

I was worried my mother might feel some attachment to those donated eggs and the children conceived from this process. She and my whole family know I work with this agency and what it's all about, and even had "hypothetical" conversations about my sister and I donating our eggs and how our parents would feel. My dad thought it was really neat and fully supported if we wanted to. My sister's boyfriend was also there for this conversation and he supported it, but was concerned about health risks and if it might inhibit her from having children in the future (it doesn't). My mom said she would be fine with it, but she would wish she could see how those children fair in life. This gave us enough reason to hold onto this secret a little longer - that she might have an emotional connection to her genetic offspring. But this really dug at me from the inside. I knew it would be a rough start to tell her, but she did also show she would understand and accept it. She is more Western than traditional Asian and quite open-minded, so we finally made the decision to tell her.

Plus, I needed to tell my family about the SMA gene I was tested positive for (see previous post). My siblings need to be tested to see if their spouses should also be tested. And I'm very curious to know which side of the family it came from. I feel there are cousins I need to also warn.

When I finally decided to share my donations with my family, I decided to first tell my mom individually. I didn't want anyone breaking it to her before me -- that could end in tragedy. I was prepared and had the introduction letters I had received from each of the recipients explaining who they were and why they needed my help. I fortunately also had some additional letters from my first recipients talking about how happy their lives are and their infinite appreciation for the gift of their child. That was probably the best thing that helped my mom understand the main reason why I chose to do this, and she came around to accept it quickly. She felt the most empathy toward all the recipients who struggled for so long and had little hope to ever raise children otherwise.

I next told my sister and she was excited about it. She wanted to be there when I told my dad and brother. My mom was there for this revealing too and everyone thought it was really cool and supported that I had done it myself. 


There are some donors that apply and we ask them if they have any support for their donation. Some donors have already told everyone they know they want to do this and have their support. There are a few (mainly international students) who are scared to tell anyone, scared that it's too taboo a subject to discuss with any of their friends, and are alone through the process. I recommend letting at least one person close to you know so they can accompany you for the retrieval. You can call on them if you need help, especially if you are too scared to take your first injection by yourself. 

For those who plan to wait to tell their family until they are matched and already starting the donation process, do not do this! You are bringing them some pretty heavy news that affects them as well, and since they have no time to process even the idea of this because you are already committed to go through with it, they tend to react pretty strongly with little chance of having an open mind. If you will let your family in on this info, you need to tell them before or after you are committed to a donation cycle.

Why did I stop donating?

Wow, it's been a long time since I've posted anything on here. Anyway, I have a few new things to add here. I still work with AED and while consulting with new donors who are considering to donate with us, many of them have read up on my blog to familiarize themselves with the process. I now get a question from both new and current donors considering if they should donate more about why I stopped donating at 3 cycles. I never really posted my reason because for a while, it was very personal information and I was very sad about it. Actually, the last post I wrote, "What if I fail my screening?" was my response to why I stopped. 

I did attempt a 4th donation for a NY couple with a different IVF clinic on Long Island. I traveled there for my screening to repeat testing of infectious diseases and look at my hormone levels and antral follicle count (vaginal ultrasound). There was also one additional genetic test that my previous clinic didn't include with their screening. 

Three weeks later, I was shocked to receive a call from my case manager that I tested positive as a carrier of Spinal Muscular Atrophy (SMA). I almost felt they had to be wrong because never has there been any case of this in either side of my family tree. Well, just as my previous post suggests, I came to terms that I can no longer be a donor anymore, and I'm much better learning it this way than the hard way of possibly giving birth to a child who might suffer with this disease. In severe cases of children born with this, they will die before reaching age 2. Most people are confined to living in a wheelchair their whole life.

Having learned this information, I had my case manager from my previous 3 donations send a message on my behalf to those recipients to inform them of the new genetic risk I learned about so they could be informed and test their babies. The good news about being a positive carrier is that my children are not at risk to have this disease unless my partner is also a genetic carrier. If we are both carriers, then the risk is 25% that our child will be born with this. As long as the Intended Fathers weren't carriers themselves, then their children are safe - they just have a 50% chance that they could be carriers as well and if so, their future spouses will need to be genetically tested for this before having their own children.

It was devastating for me to know I can't donate anymore. But at last, that is the reason why I stopped at 3 donations. I was willing to do more. I probably would have done it all 6 times (the maximum allowed in the USA according to guidelines of the American Society for Reproductive Medicine). But, it never takes away the happiness I still feel for helping my first 3 recipients. I will forever be proud of that.

Wednesday, November 25, 2009

What If I Fail My Screening? :(

A fail anywhere in your donor screening is truly a good thing to know, simply because it makes you aware of an issue that you may have otherwise never known. You can start dealing with it early on and in some cases, reverse it, or at least prevent bad situations from occurring in the future.

Some donors may fail during the psychological screening - perhaps you need to take a closer look at your attitude about life. Talking to a counselor could help you to become a more well-rounded and better person in the future, and for those who surround you in your life.

Some donors may fail during the physical screening - one of our donors learned about an irregular heartbeat she never knew about and is now proceeding with follow-up appointments to see a cardiologist and learn whether this issue could become serious in the future. Learning about it now may save her life down the road and be able to live longer because she was made aware of it early on. Other donors may learn they have a serious cyst on their ovaries that should be removed, or they may be developing endometriosis themselves, or learn that possibly they already have low ovarian reserve. They each have an early chance to do something about it now before it becomes too late - especially if they want to have their own children in the future.

Some donors may fail during the genetic screening - they may be a carrier of a genetic disease and could put their future children at risk. At least these donors know now so that when they are ready to have children of their own, they can see a genetic counselor with their spouse to learn their options of having healthy children. In some cases, as long as they learn the spouse is not a carrier, there is no risk for their children other than to become a carrier of the gene themselves. It's quite possible those donors who learned they are genetic carriers of a bad gene may save themselves from future issues of delivering children with a genetic disease.

So, don't take a fail as such bad news. It will of course be difficult to hear for the first time, and to know that you can't be a donor will be very disappointing, but take it with a grain of salt and learn from it, and do what you can to improve the quality of your life. You could be saving your future offspring, your family, and especially yourself.

Wednesday, November 18, 2009

How Are The Eggs Retrieved?

Disclaimer: Blog post is written based on personal experience. I am not speaking as a medical professional. It is for your reference only.

The egg retrieval procedure is considered in the medical field to be a low-risk minimally-invasive surgery. The actual retrieval process only takes about 20 minutes, but you will be asleep for 45-60 minutes under light IV sedation, so you'll be taking a nap and won't feel anything.

The eggs are retrieved by a needle that goes directly through the vaginal wall and aspirates the eggs from the follicles on your ovaries. They don't actually go through your uterus or fallopian tubes, so that's why women with their with tubes tied can still be donors. If you need something to compare it to, they won't go any deeper than they would in a normal pap smear. There are no nerves inside so when you wake up, you will not feel any pain, just a dull soreness like you did a muscle workout in your abs, as well as menstrual cramping.

Since there are no cuts made or stitches needed, your body will quickly heal on its own. You will only wear a menstrual pad for one day from the spotting you'll have from those needle punctures inside. It's like a day of having light spotting.

You'll be able to walk out from the clinic on your own, but it is recommended you go straight home to rest for the full day. I experienced a lot of abdominal cramps and what felt like "side stitches." Extra Strength Tylenol or Ibuprofen did the trick (prescription strength is 800mg only 2x/day), plus a pillow propped under the knees (to stay in a more fetal-like position), and I really like a heating pad to soothe any aching tummy soreness. You can still get up and walk around. Most donors are able to return to school or work the next day, but you'll still feel sore. By the third day, you'll feel pretty well back to normal, but for a week, you'll still want to take it easy and restrict physical activity just to be safe. I felt comfortable enough to resume exercising a week after my retrievals. One last side effect I experienced was constipation lasting for days or up to a week after my donations and some bloating. Make sure to take a lot of fiber the retrieval week.

So, the retrieval itself is really not anything major, it's actually quite simple. I understand that for most donors, because they are so healthy, they had never had any reason to require a surgery before, and it will be a brand new experience for them. It was for me. But afterward, I was able to think, "What was I so worried about? This feels fine. It wasn't as bad as I thought." Because I expected it to be much worse. Set your expectations high to be safe, because every experience and body can react differently. But compared to other altruistic procedures you could do like bone marrow donation, kidney transplant, or even surrogacy, realize how easy and simple this really is. That's how I justified any pain I might feel, at least I won't be bedridden for weeks to recover from this! ;)