Garbled Communication and Rising Frustration

This promises to be a very tedious post to read and will only be for the real troopers. I thought I would go for an experiential vibe whereby, by the end of this post you might feel just as weary, confused and annoyed as I am feeling. Suffice to say that the Donor Agency (henceforth referred to as the DA), and I (WBTL… Waitingbetweenthelines), are not experiencing the best communication at the moment. From my side, I feel that we keep getting incorrect information from the DA. Given the gravity of the issue at hand, the fact that we are basically making enormous decisions about our future family based on the accuracy of the information we are given, this makes me very nervous, and I am starting to get a little mad!

In order to illustrate my point, I have reduced what amounts to gazillions of emails, into a basic dialogue between myself and the Donor Agency, with a brief appearance from our lovely doctor who has now been named Doctor Direct, for his brutal but honest style of relaying important information. TC refers to The Clinic where we are being treated. I would love to hear your feedback on whether or not you think I am over reacting??!!!

DA: Thank you for you email and your history of your difficult journey. Thank you too, for the trust you place in us to help you in your search for the right donor eggs. It is heartfelt. I have gone through our database of available donors based upon your criteria and have attached PDF’s of the full profiles of the following lovely donors that I have summarised below: Goya – proven donor in that she has donated successfully before Portuguese heritage with almost all Brown Hair and Brown Eyes in the family. Beautiful girl who has just returned to our program after another successful donation. Oval face.

WBTL: Thank you for these profiles. We really like Goya – she seems young, healthy and spunky. She has donated previously and seems to have had successful donations. Are you able to give us more detail regarding her previous donations? I’m well aware that the results of previous donations depend on so many things, sperm quality, implantation etc. but if you could give us a broad indication of the number of eggs collected and the number of healthy embryos from those collections, that would help us to cement our decision. Also, it says she would require additional travel expenses to JHB – what would this amount to?

I CHECKED WITH MY SISTER AND HER PROFILE DEFINITELY SAYS ‘THIS DONOR REQUIRES ADDITIONAL TRAVEL EXPENSES FOR JOHANNESBURG’

DA: Yes, Goya is a great young woman. Her first donation yielded 18 eggs with a negative result but as you are aware, the reality is that each cycle is different: different doctors, medication, circumstances and at a different time in your Donors’ life. Having said this, there are some superb Donors who may not have a positive track record, due to age and circumstance, for example of their recipients, or the dosage of fertility medication prescribed by the clinic. Her second donation yielded 31 eggs and the result is still pending. She has no additional travel expenses as lives in Johannesburg itself i.e. close to the clinics. Perhaps you were confusing her with Camilla who lives outside of Johannesburg and has travel expenses.

WBTL: Thank you for getting back to me. If Goya has results still pending will she be up to donating again so soon? Also, if she donated at TC will it be possible for Doctor Direct to review her file and offer his opinion?

DA: Yes, both donations were conducted at TC, so the doctors have access to her files. Once you decide to reserve her, her file and real name and contact details are sent by us to TC where they will combine her file for you for your doctor to review. Regarding your other query, Goya donated late last year, and the recipient chose to freeze the eggs for transfer at a later date due to travel commitments that came up. So yes, Goya is ready and available to donate for you should you choose her.

Dr Direct: Just looked through the file. We know her as she has donated once before at TC for a couple. We managed to harvest quite a good number of eggs and even though we did not have a pregnancy at the time we had surplus embryos that we could freeze. Therefore from a medical perspective I am more than happy with the profile.

SO WE WERE TOLD SHE HAD DONATED TWICE. NOW IT LOOKS AS THOUGH SHE IN FACT DONATED ONCE. SO WHICH ONE IS IT??

DA: We are delighted to confirm that Goya is available and committed to undergo egg donation for you. We will now turn our attention to proper co-ordination of your program, to make sure that the process between Goya and TC is smooth; we will also send you regular updates. An invoice covering our fees will be sent to TC shortly. As soon as they confirm go ahead, we will arrange for your donor to commence her medical screening. We’re here to support your egg donor cycle and look forward to a successful outcome.

A FEW DAYS LATER….

DA: You’re obviously aware that Goya has just completed a donation which means that she is entitled a rest period before commencing treatment again. Just to keep you in the picture, Goya’s timeline for her next retrieval for you will be in April. I trust that this fits in with your treatment plan ideas. Just wanted to keep you in the loop. Any queries welcome.

WBTL: I was aware of this and I had actually asked specifically if this would mean she would be ready now. I was told she had donated late last year and enough time had passed for her to be up for it now. What does it mean if she donates in April? Is that when she would start the process or is that when she would be ready for retrieval? If she starts in April when can we assume transfer would be? I’m sure you have gathered that we are very keen to get the ball rolling so to be quite honest I am a bit disappointed to hear this. Having said that, Dr Direct had said to expect a 10/12 week timeline from choosing the donor to retrieval so in my mind I had thought transfer would happen around May. Would you mind getting back to me with a rough timeline and we will process that information and see how we feel. We do like Goya very much and obviously would not want her to feel pressured into such an invasive process before she is ready.

DA: Her retrieval was first week of January so her last donation cycle ran through November/December 2014. With her compulsory three month rest period this takes her through to April which is when she will be able to have her next fertility treatment plan in place (9-12 days worth) with retrieval in April or May if Dr Direct feels that falls within your own treatment timeline. So we’re all on the same page regarding expected time period, we just wanted to make you aware that retrieval won’t happen in March for example as Goya needs to have at least one normal menstrual cycle after her last donation before she can start on any new fertility treatment plan. Hope that answers your query and makes you feel more at ease. Any further queries welcome.

WBTL: No that is fine. I didn’t realize her last retrieval was as recent as jan. We had not expected to do anything as soon as March so yes, we are on the same page. Can you let us know the amount that we need to pay as a deposit?

DA:Please check this with TC – they will be billing you. Our agency fee is RX. We will only know flight costs, once we have the confirmed treatment dates from TC. We will bill this to TC at that time and will alert you then.

WBTL: Huh? Flights? I thought she was local?

DA: Apologies, she is local – I am busy coordinating several donor cycles and I got confused.

OK, so that is about it. There was more but I really didn’t want to alienate all my readers completely. In a nutshell, we have received incorrect information regarding the number of cycles she has done, the timing of when she will be ready, and where she lives. I still feel confident that we have chosen a great donor but I really want to be able to trust the people and organisations who are organising this critical process for us. They are in charge of everything and need to be fully in control of small and big things to ensure that the Donor and I have our cycles coordinated, that she is on the right medication and dose of medication and that transfer happens at just the right time. All of this is so fragile but it is all absolutely critical in order to ensure that we get a successful outcome. And right now, I do not trust them – it feels like they are scattered and confused and this is making me NERVOUS!

And we have us a donor!

Thank you so much to the ladies who commented on my previous blog about choosing a donor… I very much appreciate the time and effort you took to share your experiences with me and your suggestions helped inform some of our decision making. Our doctor finally got back to us to say the donor we have chosen is great and he has ‘no medical concerns’ and has been happy with her previous donations. That was the green light we had been waiting for and so we have moved forward with reserving her. She has been contacted and is available and happy to donate to us. Now we just wait for an invoice from our clinic, pay up, and the ball will start rolling. I must admit to feeling rather excited… I almost feel we should celebrate with a bottle of champagne (whilst we can!!).

Choosing an egg donor

So in a previous post I mentioned that 2015 is the year of egg donation. We reached this decision rather painfully after our two experiences with IVF last year… If you recall, the first round was cancelled due to poor response and the second resulted in a miscarriage at nine weeks after a month of slow rising betas and poor ultra sounds. We met with our doctor in January and his opinion was that because I did achieve 8 eggs and two 5 day blasts on the estrogen priming protocol, I certainly was not at the end of the road using my own eggs and I could definitely try a few more cycles BUT the chances of success are significantly higher with donor eggs. This was really all I needed to hear. I’ve lost faith in my own eggs and I am extremely tired of this infertility journey and all the hundreds and thousands of ways in which it has changed me, my body and my relationships. And so we made the leap to donor eggs.

About a month ago we contacted the egg donor coordinator at the clinic where we go for treatment. She sent us a whole load of profiles and we finally picked out a shortlist of donors. This was not at all easy. Our doctor had told us to focus on a few basic qualities: age, a healthy bmi and a non smoker were his bottom line criteria. The agency had based their criteria on a close physical match… Dark hair, dark eyes, similar face shape and physique to me. The tricky part was matching the doctors criteria with the physical matches that we had been sent. We’d find a great donor and then see that she smoked, or had an unhealthy bmi, or had severe heart disease in her family history… Etc etc. Nevertheless, our choice was finally narrowed down to two donors… Donor 944 and 822. 822 was a little old for our doctors liking and our top favorite, 944, had donated previously… She had produced 16 eggs, 2 embryos and no pregnancy. I was devastated. It completely and utterly threw me to even contemplate that there could be a negative result… I mean, I’m making this sacrifice so that we can have a baby and so that we can move on with our lives and suddenly I realized that even this might not work. By this point I was also getting frustrated with our coordinator who seemed to be battling to get information from the agencies… We waited ten days just to get feedback on 944’s previous donation, which seemed ridiculous to me. Our coordinator suggested that we contact the agencies directly with the criteria that were important to us.

So we went back the the drawing board and contacted the donor agencies directly with a new list of criteria, asking them to move away from physical criteria to focussing only on egg quality. This would mean including age, bmi, non smoker and Caucasian as our only criteria… We did not want to miss out on a great donor simply because she has blonde hair and blue eyes!

They came back to us quickly with a large selection of donors. To be honest, we had a harder time choosing this time round as we felt a bit overwhelmed by choice and it became harder to see the wood from the trees. In the end I suggested to my husband that we each independently make a shortlist and then compare, which we did. Amazingly, we both chose the same people except that I had an extra person on my list. Most wonderfully, we both agreed on our favorite. She seems great… A very young 23, bmi of 22 (which is what mine was before I became fat through ivf!), non smoker, completing a medical degree with a special interest in genetics, which I found interesting. She is half Portuguese and so our child is likely to look more Mediterranean and less fair than I do… But that’s not a big deal for me. As it is anonymous we do not get her real name or adult pictures, but the agency described her as beautiful and she is a cutie in her baby pictures. Best of all, she has donated twice before at our clinic and so our doctor can look at her records and formulate an informed opinion on egg quality. As of today, he has been given her details and we are just waiting for him to get back to us. If he gives her the green light then we will book her. I am not too sure of the exact next steps but I am sure these will be revealed in due course.

My husband is now starting to experience the feelings that I had initially, and which I feel I have more or less processed… The feelings that come from a third person entering such an intimate space, of a complete stranger playing such a major role in the future of our family, of having to make such an enormous decision for our children before they are even conceived. And then, the twinkle of excitement and hope thinking that maybe, just maybe, this could be our solution and that we might actually, finally, have a baby.