Good news bad news

This one is a good news bad news story kinda post.

Take your pick, which do you prefer first?

Good News:

Yesterday I dropped off my Sildenafil Rx at the compounding pharmacy so they can make my suppositories for the IVF cycle. They told me that the cost for 3 weeks supply would be approx $360. This was as expected (similar to last year’s mock cycle cost).

About 15 minutes later, they called me back and said they could now obtain sildenafil in powder form (previously they had to grind down the actual tablets to powder before creating the suppositories) so would be able to make the suppositories for much cheaper: $130 for 3 weeks supply to be exact! Amazing! I’ll take it!

Bad News:

I had a visit to my long-term HRT specialist. Nothing really to report to them, since I will be doing IVF this year and if all goes well I wont need to get back to the HRT until I am about 6 weeks post partum. Fingers crossed that all works out! But the bad news is that my BP was a whopping 145/80. Ugh.

The funny thing is the week before when I visited the fetal maternal cardiologist, my BP was a cool 120/80. So literally one week I had a significant BP spike. I told the Dr. this and she still seemed very concerned and asked that I monitor this more closely.

I will keep checking my BP for the next few days to make sure this is just a one off. I have a feeling that my current stress level at work has something to do with this. We are dealing with a potentially litigious matter and that is taking up a lot of my time and energy. There is also a significant language barrier with some of the employees so it is a huge challenge communicating negotiation strategies with them when there is a basic failure to understand the culture and language in this market. Suffice to say, I have been more stressed than usual at work so that would explain my high BP right now.

At least I hope that is the reason for it, and we aren’t looking at something more serious.

I am planning to do some serious relaxing this weekend to compensate. Yoga and massage are at the top of my priorities for this weekend. Thinking calming thoughts from here on out.


The Game Plan

We have a game plan for our first cycle!

Today we had our meeting with the clinic nurse to sign up all our consents for the IVF cycle and get my Rx for the cycle. 

The plan is:

  • Call in on CD 1 to inform the nurse that we are starting our cycle (likely around May 17). 
  • On CD 2 start taking: Estradot 100mg patch. Change every 48 hours. Estrace 2mg twice a day (vaginally). And 25mg sildenafil four times a day (vaginally). 
  • On CD 14 lining check – go in for vaginal ultrasound to check lining. Goal is to see a lining of over 0.6mm. 
  • If all goes well, that is the week they will start the egg thaw and fertilization process. If not the drug regimen to continue till we meet that lining threshold. 
  • DH to provide his sample on the day of thaw. I will start my daily progesterone at the same time (continue all the other drugs mentioned above). 
  • Transfer of one 3 or 5 day blast depending on what the embryologist decides is best. 

In terms of time off work,  they do not have any recommendation one way or the other. According to the nurse, the research doesn’t prove taking time off is beneficial. So they say do what you think is best for you. 

The transfer is not an invasive procedure so technically I can go back to work that day. However I don’t think I will. It will be too nerve wracking. I am currently undecided on whether I will take more than the one day off. Leaning towards taking at least 3 days off work. Just for my own sanity. But let’s see. It might be better to keep my brain occupied with work. I’ll decide that closer to the time. 
So that’s it. Going to drop off my prescriptions to the pharmacist now. Especially the sildenafil that needs some time to compound. 

If all goes according to plan, we will likely see a transfer date of around June 1. DH is planning to schedule his major exam around the first week of June as well. But the clinic has said they can shift transfer day by a day or two if we know for sure what DH’s schedule is. So we will have to coordinate things with the clinic closer to the time. 

And that’s it. We are ready for our first IVF cycle for next month! This is happening. Come on CD 1!

Aortic valve stenosis and regurgitation

Bottom line, nothing to worry about too much right now. (Thought I would get that out of the way first.)

Ok, back to the beginning:

Met with the pregnancy heart specialist today. Dr. S. Apparently, thanks to the radiation treatment from the bone marrow transplant, my heart has some mild aortic stenosis and regurgitation. The key being that it is mild. More simply, my aortic valve is thickened slightly (stenosis) so it doesn’t close completely which causes some blood to leak back into my heart (regurgitation) in the wrong direction. Sounds scary. But she assures me that for now it is at the mild level, so is nothing to be alarmed about at this time. That and I feel absolutely fine. Have no symptoms of heart issues and can train for a 10k make me feel that this is probably not something to concern myself with right now.

She says the risk of any serious complications during a pregnancy (to do with the heart) are in the 2-3% range for me. I have to let her know as soon as I am pregnant, and she will monitor me as soon as we are pregnant and will keep an eye on things as any pregnancy progresses just in case and so we can treat any issues before they become worse, if at all.

From a long term perspective it is something that I should monitor and get regular ECGs every few years just to make sure it is not getting worse. But for now there is nothing else that can be done.

So filing this away in the ‘good to know, random things that are wrong with me thanks to the bone marrow transplant’ file in my brain, and will hopefully not have to revisit this issue for at least another 5 years when I will go for my next ECG.



IF Milestones

I (potentially) have just wrapped up my last period before we start IVF next month. Next CD1 is when we start this crazy ride. It feels like an important milestone to make note of.

Things could be very different in just over a month from now. I really hope they are. In a good way of course.

#MicroblogMonday: S-Town

Last week I finished listening to S-Town, the new podcast by the same people that made Serial. After finishing, it just made me miss listening to the first season of Serial (I did not find the second season quite as engaging).Microblog_Mondays

S-Town is great. It has all the elements that get you hooked and wanting to know more. Great story telling with just the right amount of suspense and plot twists to keep you hooked. I don’t want to reveal too much about the story, but suffice to say it is well worth a listen.

The problem with Serial and S-Town though is that when you reach the end of the season, it doesn’t feel finished. It is not the story telling. That was great, and they do a great job of telling the story they uncover in a way that keeps you interested. It is the material. Real life. There really isn’t a clear beginning- middle-end to life, like there is in a fictional movie or a book. Sure you could argue birth and death are the two end points. But they are not really. Before birth, there is all the preparation and anticipation, in some cases medical intervention (I’m looking at you IVF). After death there is all stuff that gets left behind, physically and emotionally. It is never really over, even when it is over.

That is why podcasts like S-Town and Serial have me hooked. They are full of complex issues, nothing is every clear cut, and in the end, you are always left wanting more. Like a perpetual cliffhanger. I love it. But it also drives me nuts!

For now I am filling the S-Town/Serial hole in my daily commute with binge watching episodes of Better Call Saul on Netflix (thank you downloadable Netflix!).  And after that maybe I will switch to reading a book. But deep down all I really want is for Serial Season 3 to come into my life.

Check out some more #MicroblogMonday posts over at Stirrup Queens

Finding the other 1 in 8

As I have mentioned before. I have slowly been telling my close friends that we are starting IVF this May. This past weekend I told some good friends who live in England.

One couple we are close to actually started dating around the same time as AG and I. The four of us were all in the same graduate school program together and became good friends back then when we started dating our respective spouses. After a few years they moved away to England, and we continue to keep in touch. Even though we don’t talk often, they still are one of our close couple friends. They attended our wedding many moons ago (he was one of AG’s best men- he had a few). A couple of years ago we flew to London to attend their wedding, where they revealed to everyone’s surprise (including their own parents) that they had eloped a year earlier! It was a wonderful trip and we really enjoyed seeing them again. Suffice to say they are a really fun couple whom we are lucky enough to be friends with. I miss hanging out with them and cannot wait till we see them again.

Apparently, even though we now live with an ocean separating us, our shared experiences have not ended.

As it turns out they too are going through IVF this year. This May/June she (I will call her EV) will be going through her second round of IVF. Once I told EV about our own journey, she too wanted to talk about her experiences.

After our facetime conversation, we spent a good deal of time texting back and forth about our own journeys so far. Her particular brand of IF is PCOS, so she has trouble ovulating, plus she is around 35 so the clock is ticking. The standard drugs (clomid etc.) to promote ovulation did not work for her. This year they graduated to IVF. Her first round of IVF produced a few good eggs. Three that made it to day 5 embryos. The first transfer of two embies failed, and she is going trough an FET this month with the last embryo of this batch. It is not of great quality, so she doesn’t have much hope for it. And then around May/June they expect to start their second round of IVF. So we will essentially be cycling together this spring/summer.

In a strange way, I am actually happy that I have someone to share the day to day struggles with. Someone who actually appreciates and knows what I am going through. Rather than all my fertile friends who, although supportive, don’t always know what to say or do when I talk about my own experience (understandable, it is hard to talk about something you have little experience with and most people have their own issues, so really why would they care about mine when they can’t relate?). That is why the whole IF blogging community and forums work, and why I love being able to pour my heart out here. But there is something different about having an old friend that actually gets it, to be going through this at the same time.

So in a strange way I feel fortunate that I get to share this experience this with EV and that she wants to share her experience with me. But at the same time, I am sad for them. It totally sucks that they also have to struggle. We both feel the same bitter/sweet way about it. Regardless, it makes me feel more positive about my own decision to tell people about my journey. I believe that more people I tell, the more others will want to share their own experiences with me as well. And at the very least, talking about it is great therapy for all involved.

But then there is the whole, what if it works for her and not for me, or vice versa situation. How will we feel? I guess it is good that we live a whole ocean apart so we can, in a way, control how much we choose to share with each other. That being said, I don’t think I would be bothered if she did get pregnant this summer. In my mind I think she has a very good chance of success, its just a matter of time (and the right protocol). So I fully expect this to work for her. I have less optimism for myself, so I am prepared for this not to work for me.

That being said, EV did a great job of getting me more optimistic about my own chances. She has been doing a lot of her own research this past year so it was nice to hear her own perspective. Even though our particular IF issues are very different, we get each other. It is a strange sense of feeling fortunate to have an ‘IVF cycle buddy’ that I know on a personal level, but also feeling sad for us to have to go through this.


Playing the Odds

As I start to tell more and more people about our upcoming IVF journey, the most common question I get is: ‘What are your chances?’*

And honestly, I am always stumped.

I mean DE IVF has great success rates, much higher than own egg IVF. Something like 60-80% success depending on what studies you read and which clinic you go to.

But I have thin lining issues, and with a lining under 7mm the reviews are mixed. Some say the odds go down, others say there is no impact. For example, this article that shows the implantation and clinical pregnancy rate was the same between two groups of women using DE IVF – lining between 5.9 to 7.9mm and  lining between 8.0mm to 23.0mm – around 60-75%.

But then I am also at a higher risk for miscarriage, I think one study I read said that those with radiation damage to the uterus saw an increased risk of miscarriage of about 30% (compared to the average of around 20%). And that risk goes for as long as 22 weeks. Leaving aside the increased risk of low birth weight and premature labour.

So what are my odds of success?

I know there is no easy answer. That is why I have never asked my RE that question. The answer will be some version of ‘I don’t know’. But the last time we spoke the RE said he was hopeful. I’m going to translate that into: over 50% chance of success. Seems reasonable right? I mean, its not like anyone can prove me wrong, or right for that matter.

So yeh. That’s what I am telling people. The odds are 50-50. It is also a fun way to weed out the optimists from the pessimists.

*By ‘more and more people’ I mean two more friends. The grand total of people that know can still be counted on my fingers.