Archive | May 2013

Planning for the future

We had our second appointment with Doctor B on Monday and I got my test results back.

My MRI was all clear, which is fantastic news. That’s one less thing for us to worry about. I was very relieved.

My blood tests confirmed the blood work I had done prior to my first cycle of IVF – I’m still immune to everything I need to be immune to which is also good news. We also confirmed my blood is Rh-negative, and Doug’s is Rh-positive. That means I’ll need an injection of Rh immunoglobulin to prevent any harm to the baby once I’m pregnant.

My blood work also picked up that I’m still iron and vitamin d deficient, despite taking supplements for the past few months. Doctor B wants me to spend more time in the sun. This is something I generally try to actively avoid because I’ve got pale Irish skin and I burn in about 30 seconds in the hot Australian sun. But I’ll give it a shot. I’m willing to try anything. I’m also going to double my iron supplement intake.

My ultrasound showed my right ovary is 7cc and normal sized, but my left ovary is very large at 14cc. Both ovaries are covered in cysts. This, coupled with the blood work, officially confirm I have an uncommon type of PCOS that makes me completely anovulatory amongst other things. There really was just no way I was ever going to have a baby without medical intervention was there? Oh well at least I’ve finally got a formal diagnosis for what’s been long suspected.

I must admit I did find it quite ironic that my good ovary is blocked off by my bad Fallopian tube and my bad ovary is attached to my partially open tube. Always the way, right? Is my body trying to ‘ave a laff with me??

To manage my PCOS and reduce my chances of getting sick with OHSS again, the doctor is starting me on metformin tablets. One per day and then increasing to three per day once I can tolerate them. Apparently they’re going to make me very queasy.

Doctor B said based on my medical problems, IVF is definitely the only way I’ll ever be able to conceive (like we didn’t already realize!). She also said something which has really unnerved me. She said given my array of medical conditions and my family history, she expects I will need a “pelvic clearance” in around 5 years time. That means I’ll need my ovaries, tubes and uterus removed before I’m 32 years old.

Previously a doctor had told me I would need this done around my 30th birthday and I’d dismissed the idea as silly. But now a second doctor was saying the same thing. It was suddenly way too real.

I may as well be 38 years old right now. I only have a few years left. I can’t even believe I’m a few days past my 27th birthday and might lose all hope in just a few years. I’m well and truly on the countdown to never being able to have children. That idea really frightened me.

You know those women who give up on every having kids and then are surprised to find they’re pregnant at 45? That will never ever be me.

Doctor B did say she believes I will be able to have a child before I hit my 30s. She believes my chances are good because my uterus is still in mostly good condition. I need to just hold onto that hope. Believe in the power of positive thinking and all that jazz.

We have also decided upon a course of action for my next IVF cycle. We wanted to start straight away but Doctor B is going overseas for a month in June/July and given my past history of OHSS she wants to treat me personally during my cycle instead of passing my care off to her replacement doctor. It’s good that she’s taking my care so seriously but disappointing that we now have another wait ahead of us.

In early July I will start taking ralovera to bring on my period, and then we’ll start injections. Doctor B is back on the 15th of July so she will be here for my first scan. This is all based on the expectation that I won’t get a period between now and July.

I get periods a few times a year and they happen out of the blue. I won’t be starting IVF until day 85 of my cycle. I’m paranoid a period is going to come along and ruin everything. They have a tendency to turn up before day 80, or just when I really don’t want them.

I’m going to spend the month trying to lose some of the weight I’ve put on during fertility treatments over the past 6 months. I’m up to 74kg now which horrifies me and puts my BMI outside the healthy range. I think it’s important I do this now while I still can.

I’m starting at a new gym and going to see my personal trainer 3 times a week. I’m also trying to eat healthy, balanced meals. I’m not sure there is anything else I can do.

I’ll also be finishing up my final semester of my masters degree at the end of June. I’ll have a heap of exams and essays due and that will hopefully take my mind off the long wait!

In the meantime we’re going to do a mock embryo transfer next week. I don’t really see the point to be honest, but I’ll do anything this doctor says to try and have a baby. I’ll report back once it’s over and let you know if my opinion of trial transfers have changed.

Advertisements

Tests

First of all let me say – wow! What an expensive few days.

Australia offers amazing subsidies for fertility treatment. An average cycle costs around $35,000. Majority of those costs are met by the government and private health insurance companies. For our first round of IVF at our last clinic we paid around $5,000 out of pocket for everything including hospital stays, medications, anesthetists fees, lab fees, storage fees when Nemo was frozen and everything in between.

So far at our new clinic we’re already around $2,500 out of pocket and we haven’t even started the actual cycle yet! The first reason for this is the simple fact that smaller, boutique fertility clinics are much more expensive than the large, production-line type clinics that advertise on the tv and in women’s magazines. Anyone who understands anything about economies of scale will see why. But those clinics don’t offer the same level of care, personalised service, tailored fertility programs and attentiveness that Doug and I really require. So we’re happy to pay more if we get a better service. Secondly, MRIs and ultrasounds are expensive. It’s ridiculous actually, just how expensive they are. But I needed them and I’m glad I had them done. I was actually really lucky that I was able to get them done so quickly.

Last week I was up at the hospital getting my ultrasound (which was routine and boring – how I hate having to fill my bladder!) so I asked to be booked in to get an MRI. The receptionist, an older lady with perfectly manicured nails, frowned and looked through the computer booking system.

“Sorry dear, the earliest we have available is five weeks away. Can I book you in then?” she asked.

“No!” I gasped. “I have an appointment with my doctor on the 27th and I need an MRI before then!”

She smiled sweetly and patted my hand. “I’m very sorry but MRI is only offered at our large hospital radiology sites. I can see their booking systems on my screen and they’re all full-up. We have a terrible backlog at the moment.”

In my mind, the fertility express train I’d been riding on all week slammed on the breaks and slowed to a grinding halt. Another five weeks until I could get the test done? I’d been waiting since April and now I wasn’t going to be able to start a cycle for another two months at least! The driver of the fertility express was throwing my suitcase off the side of the train and giving me the definitive heave-ho.

The receptionist could see me starting to hyperventilate and frowned again. “Why do you need the appointment so urgently, dear?”

“I need to get the all-clear on my brain scan before I can start IVF.” I said quietly. “I just want to have a baby.”

The receptionist bit her lip, then picked up the phone and dialed through to the radiology clinic located at Melbourne’s biggest private hospital.

“Hi Susan, it’s Debbie.” she gushed, suddenly upbeat and perky. “Look I have a favour. I need to fit a young lady in for an MRI. Can you help me out?”

There was a long pause while Susan obviously checked the computer system at her end.

“Yes I know.” the receptionist sighed. “It’s a five week wait everywhere at the moment.”

My heart started to sink. I loved this lady for trying but there was just nothing that could be done. The fertility express was pulling away from the station and I was still firmly on the platform.

“What, you have?” the receptionist said, perking up again. “Can I snatch that appointment? I’d super appreciate it!” and then she gave my details over the phone and hung up.

“My dear you’re the luckiest girl in Melbourne! While I was on the phone the clinic had a cancellation for tomorrow at 7.30pm. Can you be there?”

“YES!” I cried, my stomach doing flip flops. “Thank you so much!”

And in my mind I ran to the end of the platform as the train pulled away, took a deep breathe and jumped, landing expertly at the back of the train. There was hope yet! We were still moving forward on our journey.

The MRI was actually quite relaxing. Am I the first person who has ever thought that? Am I a total weirdo?

Previous MRIs have been scary and noisy affairs. The clunk clunk clunk and thud thud thud of the machine, the voice in my earpiece saying “Hold very still now Sadie. Very still.” and the fact the top of the machine is about 2 inches from my noise, all make for an unpleasant experience. But on this particular occasion I had a radio playing in my earpiece, a warm blanket wrapped around my legs and the bang bang bang of the machine was enough to drown out the negativity that constantly lurks in my mind at the moment. It was a rather peaceful hour in the machine and I drifted in and out of sleep. Still, you’d want it to be a relaxing experience, considering it cost $700!

After the MRI was over, I went up to pathology at the hospital and got my blood work done. The pathologist asked me why I was getting so many tests done, and I explained I was going through IVF. “Oh that’s nice. My daughter is pregnant at the moment.”I wanted to tell her she wasn’t being helpful, but instead I just smiled and congratulated her.

In the end I felt pleased for accomplishing everything I needed to in such a short space of time. Doug and I are heading back to see Doctor B tomorrow and then we’ll be able to make decisions on our next treatment. Let’s hope the test results are good and we’ll be full steam ahead on the fertility express!

(sorry….no more lame train jokes…)

A new chapter

My first impression of our new fertility specialist was definitely positive.

The doctor, who I’ll refer to here as Doctor B, asked me to bring along my medical history in my own words. It ended up being an 8 page document. She was 15 minutes late for our appointment because she’d sat in her office and meticulously read the whole thing. Straight away I felt like she was actually listening to me.

We then talked in-depth about my medical history, she asked me lots more questions and also asked my mother a lot of questions about our family history. After that, Doctor B took me through to the examination room to have what she described as the “full 20 thousand kilometre service” which meant I had to strip completely naked. She did a breast exam, felt my tummy, checked the scars from my previous two surgeries then did an internal exam, internal ultrasound and a pap smear. This is going to sound weird but even through years of problems with my reproductive system, fertility consultations, two surgeries and two rounds of fertility treatment no one has ever done such a thorough exam on me. She was patient and caring, asking me constantly if I needed to stop for a break.

During the (external?) ultrasound Doctor B noticed some adenomyosis, which she confirmed in the internal ultrasound. It looks like there’s a huge pocket of it in my uterus at the moment, which shouldn’t affect my fertility too much (ha…ha…I have no fertility!) but may cause pre-term labour so it’ll come into play later in the game. But otherwise Doctor B said my uterus is very beautiful. Finally some good news! The ultrasound also confirmed I still have cysts all over my ovaries.

“Has anyone ever officially confirmed the diagnosis of polycystic ovarian syndrome?” she asked.

“No, actually.” I replied.

Doctor B explained that whilst one in four women have cysts on their ovaries, only a few of them actually have PCOS. The syndrome needs to be strictly diagnosed by having at least two of the following three conditions met:

  1. oligoovulation and/or anovulation
  2. excess androgen activity
  3. polycystic ovaries confirmed by ultrasound with the volume of at least one ovary measuring more than 10cc.

Doctor B wanted to get an official diagnosis before we start any sort of treatment and also meet Doug.

She ordered a full set of blood work, a pelvic ultrasound to confirm PCOS, and an MRI to make sure I don’t have a pituitary adenoma. The last test was ordered because of my hyperprolactinemia. I’d previously had a CT scan confirm the presence of a tumour in my pituitary, but a follow-up MRI had ruled it out. Doctor B wanted to be sure I’m still in the all-clear on that front.

We booked in a second appointment for 27th of May – one Doug can definitely attend.

For the first time in a while I feel positive about the future.

I am 27

I handled my birthday so well. I’m actually incredibly proud of myself.

We went to breakfast with my parents, a boxing class in the afternoon with friends (and the instructor even let me bring cupcakes along which is quite counter productive to exercise!), and then went to a nice Thai restaurant and the movies in the evening. The day was so busy I didn’t get the chance to be sad that I’m not a mother, or curse the fact that I’m no longer pregnant.

I will confess I still haven’t gone to see a counselor. I’m still coping badly with my emotions. I will get around to organising that, as soon as I figure out what’s holding me back. And I know I do need to see someone quite badly.

The other day I was in the pharmacy picking up more prenatal vitamins (the ones I’ve been taking for 2 years in the stupid hope I’ll be pregnant soon) and I ended up standing next to a lady who looked about 7 months ago. She was also buying prenatal vitamins.

This weird thought popped into my head before I could even stop it. If I punched that belly, her pregnancy would disappear and then she would be just like me. It was absolutely the weirdest thing. I’m not a violent person at all. I can’t even kill spiders or bugs. I was a vegetarian for 12 years and a vegan for 2 years. I only eat small amounts of meat now because I’m iron deficient and I want to be in the best possible health for my future child. I only eat organic meat, and preferably game meat like kangaroo, because I know the animal hasn’t needlessly suffered. Anyway, the point is I would absolutely never ever hurt anyone or anything. In my mind, I wasn’t harming a baby by punching that woman. I was simply making her belly vanish. Making her tummy flat like mine. Putting us back on equal footing. Making us the same.

I told Doug and he suggested next time I have a weird or violent thought like that I should try smiling and see if it helps it to go away. I also told my mother and she laughed hysterically and told me it was the silliest thing she’d ever heard. That didn’t exactly help.

In other news, we get to go see our next specialist in a few days. Finally! Well, I get to go see her. I made a massive cock up and Doug isn’t able to go to our first appointment. He has a super busy job, as you might be able to tell by the fact he’s missed a lot of doctor’s appointments in the past. In order to make sure he could attend this new appointment I locked it into his diary weeks in advance. 22 May. 10am.

Except the appointment isn’t at 10am, it’s at 3pm. I was so nervous and panicked I wrote down the wrong time.So now poor Doug has kept his morning free (at my request) and piled all of his daily meetings in the afternoon. I feel awful and stupid that Doug can’t come and sad that I have to go by myself. I’m thinking of asking my mother to come with me instead for moral support.

What else has been happening in our lives since I last updated? Not a great deal.

Doug’s pregnant sister Jess came to stay at our house last weekend. It was actually really hard to see her. She isn’t sensitive at all to my needs or feelings. She, her husband Rory and one year old daughter Layla live about 8 hours drive away and they came to stay at our place so they could attend a wedding. She walked into the house, no “hello” or “how are you”, just turns to Doug and says “I’m hungry and I need to feed my unborn baby. Give me food.”

I could see Doug falter and not know what to do. He was torn between his desire to protect me, and to do the right thing by his family. In the end I was the one who made her food. I didn’t want a fight between the siblings in the first 5 minutes after Jess’s arrival. She is 24 years old, immature and always been treated like the princess of her family. I understand why she is the way she is. Plus, I just don’t like conflict.

But I kept on looking at her and thinking you tried for 3 months before you became pregnant. That’s just not fair.

Every now and then she would ask a question about me, like “when do you next see the specialist?” and I’d think she cared. But then would immediately segway into “my pregnancy pants don’t fit well, do you think my bump is bigger this time than last time?” or “the baby is awake! I can feel it moving!”

You tried for 3 months. Only 3 months.

Then Rory arrived not long afterwards. He was part of the wedding party, so they’d come in separate cars. He walked into the house, got down on his knees, pushed his face up to Jess’s belly and started talking to his baby. “How’s my little one? Are you growing big and strong? What a beautiful baby you are.”

I could feel the tension radiating from Doug, who was standing by the fridge in the kitchen. The fridge where the photo of our long lost Nemo was still stuck to the surface with magnets. These people were supposed to love and care about us. Why were they doing this to us in our own house?

3 months and now you’re in baby bliss. Just 3 months.

The shining light of the weekend was spending time with our niece Layla. We love her to bits. She has just started saying Unkie Doug and Arny Sadie. She’s a ball of laughter and fun. We babysat while Jess and Rory were at the wedding. We played with chalk and crayons, then sat down to watch Disney movies before I cooked dinner. Sometime during the course of the evening she stopped calling me Arny Sadie and started calling me Arny Mummy. It was weird hearing a little person look at me and call me Mummy, even if the word Aunty was in front of it (or at least Layla’s version of the word aunty). I hope I get to hear it for real sometime soon.