How to be Supportive of Infertility

I was going through old emails and clearing out my inbox and came across one that someone sent me in reply to a complaint of a friend who I felt minimized me when I talked to her about how difficult POF and infertility issues have been. I think it's worth posting here. It is an article Resolve did on how to be supportive and gives a good view of what it's like for those that face infertility. It is however long so I won't take up all the space here. Here's the link:

http://www.resolve.org/site/PageServer?pagename=lrn_ffaf_ie

Long Term Outlook

POF has many facets for how it affects your life. Your ovaries basically shut down or stop working. This means that eggs aren't formed and it is the formation process (monthly cylce) and an active ovary that produces most of estrogen in a womans body and also produces some testosterone and other hormones. Without estrogen you run into problems with absorption of calcium and maintaining bone density and also cardiovascular risk. Basically you become prone to the same issues that a menopausal woman becomes susceptible to...but with POF you are at risk 20-30 years sooner. Most women with POF take Hormone Replacement Therapy (HRT) in order to counter the risks but even then you are still at risk of osteoperosis and heart disease. It's scary stuff.

I remember when I got over the initial infertility issue enough to worry about my health that I was terrified I'd have osteoperosis and I worried about POF upping my risks of hereditary heart problems. I asked my doctor about getting a DEXA scan (bone scan) for osteoperosis and he said it was unnecessary and I should be fine. That was another reason that Jeff and I went to the NIH in Washington D.C. because they performed standard tests for POF free of charge for their study. They realized that osteoperosis is a risk even in a 27 year old (at the time) woman when it comes to POF. Luckily I tested normal for bone density at the time but I should be retested every few years and take proactive measures like weight bearing exercise.

Anyway enough rambling. Basically this post was just to say that I am doing a research paper for my college course Biomed Core (biology and physiology) and I chose to do this on the long term health risks of Premature Ovarian Failure. I think it will be good for me to get more information and I've researched it before so I already know a lot of the material. I am interested to find out more detail about the risks though.

Misconceptions

Over the past week I have talked to a couple of friends about the POF situation and I'm always kind of surprised at the misconceptions people have. Even after just talking in detail to one friend about the idea of chosing a donor that might look similar to me, a couple minutes later she says that she hopes that our kids will have my blue eyse. I don't understand what part of donor egg people don't get. It means that the starter cells will not have my DNA or my genes and therefore there is no possibility that the child will have "my" blue eyes.

Then in a conversation with a different friend about her house remodel she comments "we're saving for our house and you're saving for a baby". I asked how much her house remodel had cost so far (around $10k) and didn't bring up the cost difference alone that there was because I knew she would argue it. Instead I just say "well at least when you save the money and put it out there you're guaranteed a finished product" and she says "not necessarily". Uh...yes you are. You might have other projects and more money to go into it but generally speaking in terms of retail sales (Home Depot/Lowes included) you get what you pay for. Seriously where's the argument there? That is another misconception that really bothers me. People just think IVF is 100% effective and the solution. When in reality the average nationwide success rate is about 40% (only double the 20% success rate expected each month for regular couples) and 15,000 times the cost. It's not always a solution and it's not cheap. easy or guaranteed.

I have decided that I need to not worry about it though. People will never understand what it's like or the facts of it unless they've been there. I used to think it was worth educating my friends on, at least those I felt okay talking to. But with my friends it seems to go in one ear and out the other. I need to not be offended so much when people don't understand. I think I'm to the point where I don't feel a need to complain about it (at least for now hehe) because I feel more hopeful that things will work out.

Infertility video that I put together...

Keep On Keeping On

Well...things have calmed down since the last post. We're still not impressed with the experience at UCRM clinic but they have come back from it with a positive light. Dr. G and even the specialist, Nurse G, have both made apologies and efforts to correct things. I feel better about them and just wish that "appointment" had never happened (even though it never did haha). I look forward to a second chance and hopefully it won't be too awkward.

We are doing okay on savings still, even though I am not employed right now. My annual vacation pay went into savings and now we are sitting a little more then half-way to the goal of $20K. Gosh it still astonishes me how much this is going to cost. Sometimes I think of the money and that it's just a chance not even a guarantee. But most of the time I don't really consider how much money it is so much as how it would be to have it work. I am trying not to be jaded on the fact it is so much easier for so many people. I am trying to focus more on the fact that this will be a unique experience that not many people are given and that when we get to have a child from this that there will never be any doubt that we wanted and worked to have it happen.

The donor specialist "appointment"

Jeff and I tried to go to an appointment with the egg donor specialist yesterday. Emphasis is on "tried". What a joke. We sat in the waiting room for 45 minutes before Jeff asked the receptionist what was going on. Then we waited another 10 minutes before the specialist called us in. Then she apologized and had the nerve to tell us she didn't know about the appointment and didn't have it written down. She proceded to try and ask me about history and the doctor we were working with and told me she didn't have my file available either...I guess I shouldn't have expected her to since she didn't have the appointment written down. But I think it just sunk in at that point and really set me off. I snapped at her and said "Are you kidding me? You don't have my file and you're not even prepared for this meeting? Forget it! We're leaving!" And I got up and stormed out of her office and out of the Clinic office with Jeff following behind me. I was livid and it just annoys me. You set an appointment expecting them to have information and to get answers...stuff you've been thinking about and looking forward to learning more about for a few weeks or more and then they totally drop the ball. I contacted Dr. G's office and asked them who to file a formal complaint with and we're going that route.

We even considered other clinics but the only other one in Utah doesn't have the best success rates or experience with donor egg and it costs more. The one's outside of Utah cost around $32k and that's not including travel expense, etc. So in the long run it looks like we are stuck with this clinic. I will definitely be checking on how involved this woman would be in a cycle though...like if she monitors or has anything to do with it past selecting a donor then I will be expressing my concerns left and right.

Worries...

I am just feeling worried about things right now. I'm worried about my job...or lack thereof. I know that quitting DCFS was the right thing to do but I'm stressed that I don't have a concrete plan of attack now. I'm worried about money...money to get by, money to save and money that is in savings and if it will be able to stay there. I realize I'm just getting discouraged and I know it'll be okay and better in the long run.

We also have an appointment with the egg donor specialist on Monday. We aren't planning to pursue anything anytime soon but we want to get a better idea of what we are getting into. I'm not sure how I will take the appointment. I don't think I've had a doctor's appointment regarding POF that I haven't cried at. I want to know what to expect and I want to be excited about all of these things but I'm just really nervous too.