Patience isn't one of my strong suits. I work hard to suppress this personality trait in my every day life: when talking to people and they have boring stories I'm not interested in hearing; when dealing with slow clients on the phone; when coworkers come for a chat I'm not in the mood for; when people have solvable problems they're whining about; the list goes on. There are times my impatience wins but for the most part I'm able to function in society like a regularly patient person.
It's been difficult to keep my frustration at bay with how long everything takes in fertility treatment. I was frustrated when we needed to see the urology specialist who scheduled us for May but ended up having a cancellation in March. I was further frustrated when we discovered we'd need to do surgery which would delay any IVFs for three months, and then even more frustrated when the first available opening was at the end of May even though we were seen in March. I almost lost my marbles when I found out we'd have to wait to see the RPL specialist in October but then it worked out that we were able to go sooner and got an appointment in May. That was nearly a miracle. And now I'm realizing how stressful May ended up being.
It doesn't end there. The RPL specialist wants me to repeat the hysteroscopy because the images sent from old clinic didn't have what he's looking for. I'm not thrilled about another surgery. I'm really unhappy about it, actually. But beside the fact that it needs to get scheduled around a period, they also need to do some work to figure out what the stain test is because it's not standard protocol. So I was able to schedule it only based on next month's estimated period, not this month. This pushes back everything else.
In addition to all the waiting, the RPL specialist recommended repeated the ERA, this time unmedicated. I'm really not thrilled about another unpleasant biopsy, especially since I already did this twice at $800 a pop out of pocket. Unmedicated means no FET drugs or birth control. He wants us to go straight from that to a retrieval cycle. The reasoning behind that is to take advantage of the cycle of not suppressing the ovaries with bc pills and possibly needing less medication to stimulate. From there he wants to go straight into an unmedicated FET in the third month. All this needs to be timed so that the retrieval month falls out after the necessary recovery period of the varicocele repair.
Looking at it all at once is very overwhelming. I'm seeing a very frustrating summer ahead and I get annoyed and upset and frustrated at everything that needs to happen, at just the right time, for us to even start thinking about a possible retrieval or transfer. All things considered, we're know we're so lucky we were able to get in to see the RPL specialist sooner rather than later for obvious reasons. But this is rough. It's really rough to just wait. It's really tough to see my friends starting to think about bar and bat mitzvah celebrations for their preteens. We're not even any closer to having an infant.
In the grand scheme of things it's only a few weeks. I know that logically and most of the time I'm ok with it. I've been able to shove down most of my frustration and impatience under the guise of "doing something" with these appointments. But every so often something pops up and I get reminded of how frustrating it all is. I'm upset today because the hysteroscopy was scheduled for end of June instead of next week. But the reality is that a few weeks don't make that big of a difference. I'm thinking of it compounding and if everything takes "just a few weeks" then it builds up to months and months of waiting.
I know I can't think like that. I just won't survive. My blood would boil in anger at the injustice and then they'll delay things even more to treat my sky rocketing blood pressure caused by all the impatience and frustration.
My husband made me feel better by saying we should just take it one day at a time. I can't think of a better way to tackle this. We really have no other choice. Every other year the summer seems to fly by. So maybe if I focus on one day at a time it won't seem so long. While I can't help but be impatient, I can try to incorporate fun summer aspects sprinkled throughout to help it go by faster.
When thinking about the difficult aspects of infertility, there are a lot. The first ones that come to mind are the devastating negative betas, or the traumatizing miscarriages, or the emotional roller coasters during stim days and embryo development. I'd rank these waiting days among the top five as well. Waiting for each procedure, each test, each surgery, each appointment one at a time with weeks in between trying not to scream in frustration while attempting to go about your daily life as though this is normal is pretty mind boggling.
So I had a cry. I got some hugs from people I love. I got in a good laugh and made some food for Shabbat. And now we just wait #oneatatime.
Showing posts with label RPL. Show all posts
Showing posts with label RPL. Show all posts
Friday, June 8, 2018
Wednesday, June 6, 2018
Latest happenings
It's been busy at work and I haven't had much time to think or process. Now that things are slowing down for the season, I wanted to update on what's been happening.
On Sunday I took advantage of my lab being open and knocked out the glucose/insulin test that the specialist recommended. It's a smallish lab -- only about 20 seats in the waiting room -- and they're only open until 11 am, so knowing I had at least a 2 hr wait, I had to make sure to be there early. I thought it would be a slow day, but the place was hopping the entire time I was there. I signed in and it took almost 30 min before they got me checked in and did the first blood draw. Then I had the gross drink and waited an hour for the second blood draw. At the two hour mark they took final blood. While I was waiting I was totally a backseat driver in the waiting room: telling people where to check in, showing them where they are in the queue on the screen, getting someone who had stepped out for a cig that it was their turn. At one point I overheard a clueless guy tell the receptionist that his doctor at [old clinic] didn't give him a lap slip so I helpfully suggested emailing his nurse. I was helpful all over the place. I hope results come back soon and that they're all normal. In the meantime have a beautiful purple-yellow bruise to remember my time there.
After bloodwork I went to get my nails done - it's been a while and I had a work event the next day. I went with a pale pink on my hands (business) and smokey red on toes (party).
I also had my follow up appointment with my endocrinologist. My TSH has finally reached normal levels: 1.24. Hooray! That means I don't have to keep coming back every 4-6 weeks to check levels. Now we're at 6 months checkups. She got the latest about what's happening fertility-wise and told me to keep her posted if my RE takes any labs that include thyroid, and when the next transfer is in case I get pregnant and the meds need to be adjusted as well.
I sent over the images from my hysteroscopy to the specialist and he said he couldn't see what he needed and recommended a repeat. So I need to schedule that for sometime in the next few days.
A few weeks ago I noticed a new trick my body likes to do which is make my heart race. At one point it scared me so much I went to urgent care and they got an EKG. My heart was beating at 100 bpm and my blood pressure was elevated but other than that they couldn't see anything wrong. EKG came back normal. Physical came back normal. I wasn't out of breath and didn't have pain anywhere. It was the Friday before a 3 day yom tov and right before my husband's surgery so they diagnosed it as anxiety. Maybe it was. It hasn't gotten as bad since but I have noticed the racing every so often, weirdly when I'm at rest. It never lasts more than a min or two and then I forget about it. I take my pulse often now to see where it's at, which is usually somewhere in the 70s. Every so often I'll feel it go back hovering around the 90s when I'm at rest. At urgent care they said as long as it doesn't go above 100 or 110 then it's not a big deal, especially since they couldn't find anything wrong. I mentioned it to the endocrinologist who said that it's not a side effect of the thyroid meds or any of the meds I'm taking. But she did say to look out for shortness of breath combined with leg pain, which is a sign of the bc pills causing clots, and (rarely) causing clots in the lungs which makes getting oxygen to the heart an issue. She did say that if it persists or episodes get longer that I should go back to the cardiologist. Maybe I'll do that anyway. I don't want to keep being the kid who calls wolf but I'd rather look dumb than have an issue, especially with a potential pregnancy on the line.
My husband sent me a picture of a bug he found in the kitchen and I panicked and called the exterminator for a full workup against roaches, mice, and all pests. I googled roaches and the internet said if there's one there's likely hundreds more. Ewww. The guy took a look at the bug and said it was a beetle, not a roach. He searched the house and found not much more than a few spiders in the basement and couple of ants outside.
The weather has been unseasonably frustrating with lots of fog, rain, and humidity. There are mild patches of sun when we remember that oh yeah it's summer. At some point our roof started leaking. We called the roofer and got an estimate for a repair ($800) or replacement ($8000). So far we're putting out bowls when it rains and hoping that before we need to make a decision it will either repair itself or get so bad that insurance needs to get involved.
Another summer project I want to take care of, other than ttc, is decluttering. Every year I say I want to go minimal and I think this year I want to make it real. There are drawers of stuff that we don't need; closets of stuff we're storing and never look at; a storage area full of things we never touch. Why should they collect dust, and apparently spiders, when someone else can make use of it? If we don't use it on a regular basis, or at all, it needs to go. If I only manage to make a small dent in what needs to be gotten rid of, it's still a win. The ultimate goal is to feel like if we were to move tomorrow, I'd have nothing that I need to throw out. I'm still unsure what to do about thinks I know I'll never use again but am unsure about giving away, like my wedding dress. I guess I can start with the non-sentimental stuff and work from there.
Summer is upon us and I want to take advantage of the longer daylight hours. I want to get into a routine that includes better workout schedule and better food planning. I know it's just a matter of starting and I'm mentally motivated but need to get my butt in gear. My husband is on board to join in so that can be a big help if we do it together. Let's start with 10 lbs. I decided I'd get myself a present at the end of the summer if I'm successful. Maybe a bosch mixer or a new hairstyle.
Our 11 year anniversary is coming up. My husband's birthday is also coming up. This past week we sponsored kiddush in memory of our grandmothers, who happened to have the same birthday and died within a year of each other.
Happy summer :)
On Sunday I took advantage of my lab being open and knocked out the glucose/insulin test that the specialist recommended. It's a smallish lab -- only about 20 seats in the waiting room -- and they're only open until 11 am, so knowing I had at least a 2 hr wait, I had to make sure to be there early. I thought it would be a slow day, but the place was hopping the entire time I was there. I signed in and it took almost 30 min before they got me checked in and did the first blood draw. Then I had the gross drink and waited an hour for the second blood draw. At the two hour mark they took final blood. While I was waiting I was totally a backseat driver in the waiting room: telling people where to check in, showing them where they are in the queue on the screen, getting someone who had stepped out for a cig that it was their turn. At one point I overheard a clueless guy tell the receptionist that his doctor at [old clinic] didn't give him a lap slip so I helpfully suggested emailing his nurse. I was helpful all over the place. I hope results come back soon and that they're all normal. In the meantime have a beautiful purple-yellow bruise to remember my time there.
After bloodwork I went to get my nails done - it's been a while and I had a work event the next day. I went with a pale pink on my hands (business) and smokey red on toes (party).
I also had my follow up appointment with my endocrinologist. My TSH has finally reached normal levels: 1.24. Hooray! That means I don't have to keep coming back every 4-6 weeks to check levels. Now we're at 6 months checkups. She got the latest about what's happening fertility-wise and told me to keep her posted if my RE takes any labs that include thyroid, and when the next transfer is in case I get pregnant and the meds need to be adjusted as well.
I sent over the images from my hysteroscopy to the specialist and he said he couldn't see what he needed and recommended a repeat. So I need to schedule that for sometime in the next few days.
A few weeks ago I noticed a new trick my body likes to do which is make my heart race. At one point it scared me so much I went to urgent care and they got an EKG. My heart was beating at 100 bpm and my blood pressure was elevated but other than that they couldn't see anything wrong. EKG came back normal. Physical came back normal. I wasn't out of breath and didn't have pain anywhere. It was the Friday before a 3 day yom tov and right before my husband's surgery so they diagnosed it as anxiety. Maybe it was. It hasn't gotten as bad since but I have noticed the racing every so often, weirdly when I'm at rest. It never lasts more than a min or two and then I forget about it. I take my pulse often now to see where it's at, which is usually somewhere in the 70s. Every so often I'll feel it go back hovering around the 90s when I'm at rest. At urgent care they said as long as it doesn't go above 100 or 110 then it's not a big deal, especially since they couldn't find anything wrong. I mentioned it to the endocrinologist who said that it's not a side effect of the thyroid meds or any of the meds I'm taking. But she did say to look out for shortness of breath combined with leg pain, which is a sign of the bc pills causing clots, and (rarely) causing clots in the lungs which makes getting oxygen to the heart an issue. She did say that if it persists or episodes get longer that I should go back to the cardiologist. Maybe I'll do that anyway. I don't want to keep being the kid who calls wolf but I'd rather look dumb than have an issue, especially with a potential pregnancy on the line.
My husband sent me a picture of a bug he found in the kitchen and I panicked and called the exterminator for a full workup against roaches, mice, and all pests. I googled roaches and the internet said if there's one there's likely hundreds more. Ewww. The guy took a look at the bug and said it was a beetle, not a roach. He searched the house and found not much more than a few spiders in the basement and couple of ants outside.
The weather has been unseasonably frustrating with lots of fog, rain, and humidity. There are mild patches of sun when we remember that oh yeah it's summer. At some point our roof started leaking. We called the roofer and got an estimate for a repair ($800) or replacement ($8000). So far we're putting out bowls when it rains and hoping that before we need to make a decision it will either repair itself or get so bad that insurance needs to get involved.
Another summer project I want to take care of, other than ttc, is decluttering. Every year I say I want to go minimal and I think this year I want to make it real. There are drawers of stuff that we don't need; closets of stuff we're storing and never look at; a storage area full of things we never touch. Why should they collect dust, and apparently spiders, when someone else can make use of it? If we don't use it on a regular basis, or at all, it needs to go. If I only manage to make a small dent in what needs to be gotten rid of, it's still a win. The ultimate goal is to feel like if we were to move tomorrow, I'd have nothing that I need to throw out. I'm still unsure what to do about thinks I know I'll never use again but am unsure about giving away, like my wedding dress. I guess I can start with the non-sentimental stuff and work from there.
Summer is upon us and I want to take advantage of the longer daylight hours. I want to get into a routine that includes better workout schedule and better food planning. I know it's just a matter of starting and I'm mentally motivated but need to get my butt in gear. My husband is on board to join in so that can be a big help if we do it together. Let's start with 10 lbs. I decided I'd get myself a present at the end of the summer if I'm successful. Maybe a bosch mixer or a new hairstyle.
Our 11 year anniversary is coming up. My husband's birthday is also coming up. This past week we sponsored kiddush in memory of our grandmothers, who happened to have the same birthday and died within a year of each other.
Happy summer :)
Wednesday, May 30, 2018
Specialist update
On Friday, barely an hour after my last post about the specialist was published, I got a call from their office. He had a change of travel schedule and had an opening on Wednesday after Memorial Day weekend. My girl got us on the schedule for Wed morning and made sure that all the paperwork I submitted was received and added to my electronic file. Bless her.
We booked a hotel and drove in on Tuesday evening after work. Traffic wasn't terrible and we were in by 10:30 pm, parked the car, and went walking around the city looking for dinner. We were passed out asleep by midnight.
The appointment was this morning. The office was recently remodeled and everything was bright and clean and new. The doctor couldn't have been nicer, but beside that he was sharp and engaged. He had a methodical way of thinking that I appreciated. It was about two hours long including going over all our history, answering a lot of his questions, tv ultrasound, and a plan of action.
Among a bunch others, his recommendations include:
We booked a hotel and drove in on Tuesday evening after work. Traffic wasn't terrible and we were in by 10:30 pm, parked the car, and went walking around the city looking for dinner. We were passed out asleep by midnight.
The appointment was this morning. The office was recently remodeled and everything was bright and clean and new. The doctor couldn't have been nicer, but beside that he was sharp and engaged. He had a methodical way of thinking that I appreciated. It was about two hours long including going over all our history, answering a lot of his questions, tv ultrasound, and a plan of action.
Among a bunch others, his recommendations include:
- Glucose/insulin test
- Toxins test
- CD138 stain to check for inflammation in the lining
- Hysteroscopy (if pics from the one I had in Jan don't show what he's looking for - need to have those transferred over)
In addition, he had recommendations for future IVF and FETs, mainly to change up the medication and protocol. So in short, everything. All of our appointments will be done locally with our new RE so we won't have to go back and forth to see him, but he will still be managing care from his office and be in contact as we go on. After the appointment we got lunch and joined traffic to get home. The whole trip was basically 24 hours.
I hesitate to say that I'm hopeful. I am encouraged so I guess that's a form of hope, but it's hard to let go of the baggage we're carrying around in the form of multiple losses. Continued failure weighs you down. He seems to really understand the field in a way that gives him the ability to take a bird's eye view of the situation and make suggestions for improvements. Other REs have the exact same tools but just aren't looking for the same things. I hope we're able to rule out a bunch of things, or even figure out and treat issues, and that it brings us closer to success. At the very least it's something to do while we wait for my husband to recover from varicocele repair. Maybe I am hopeful just a little bit.
Friday, May 25, 2018
Specialist
When I first called in March for an appointment with the recurrent pregnancy loss specialist in New York, I was told that he was booking in October. What could I do? I didn't believe we'd have to wait that long but I took the appointment and prepared to wait until the first opening.
I call weekly to find out if there are any cancellations. I already know not to call first thing Monday morning. Not only because the morning shift receptionist is slightly more grumpy, but also because no one has had a chance to cancel yet. Tuesdays before noon are the sweet spot. At one point I was able to move up from Oct to Sept. Score. After that it kind of got stuck there for a few weeks. Now when I call I'm being told that he's booking in March 2019.
While my husband was in surgery on Tuesday I got a call from the girl I always speak to in their office. She didn't leave a voice message and by the time I returned the call an hour later the spot had already been given away for Wed morning. However, my girl told me that if the couple does end up showing then we can have their spot. Yes, I told her that would be fine and that I would definitely take it. She said she needs them to show up before she can shift things on the schedule but that I'll get a call again the next day. It worked out perfectly because, all things considered, as important as this appointment is, realistically there was no way we could make it to NY hours after surgery. We would have needed to get on the highway four hours after getting home from the hospital and spend the night driving. Not so great right after a procedure that makes it uncomfortable to sit.
The next day I got the call back. Good news and bad news. The good news is that the couple did show up so their appointment became available. The bad news is that the doctor had his own waitlist of people he's trying to get on the schedule. My girl said she advocated for me, saying we've been waiting a long time and that the appointment was all but promised to us. He apologized and asked her to apologize to us but apparently these other folks had priority. It wasn't all bad news: I got their spot which is in July. So it wasn't as soon as I wanted, but still sooner than September. Sweet! I also really appreciate that she advocated for us. She doesn't know us personally but still went to bat - I feel very grateful.
At this point I know that I need to get all the paperwork submitted right away so that if there is another last minute cancellation we don't have to scramble. I don't know what we expect him to tell us or what he can do, but I know that I don't want to keep trying the same thing and have the same results over and over. He may say there's nothing we can do but he may not; and for that it's worth the time and effort to go see him. Clearly he must have something to say if he's booking a year out. We'll see.
Shabbat shalom.
I call weekly to find out if there are any cancellations. I already know not to call first thing Monday morning. Not only because the morning shift receptionist is slightly more grumpy, but also because no one has had a chance to cancel yet. Tuesdays before noon are the sweet spot. At one point I was able to move up from Oct to Sept. Score. After that it kind of got stuck there for a few weeks. Now when I call I'm being told that he's booking in March 2019.
While my husband was in surgery on Tuesday I got a call from the girl I always speak to in their office. She didn't leave a voice message and by the time I returned the call an hour later the spot had already been given away for Wed morning. However, my girl told me that if the couple does end up showing then we can have their spot. Yes, I told her that would be fine and that I would definitely take it. She said she needs them to show up before she can shift things on the schedule but that I'll get a call again the next day. It worked out perfectly because, all things considered, as important as this appointment is, realistically there was no way we could make it to NY hours after surgery. We would have needed to get on the highway four hours after getting home from the hospital and spend the night driving. Not so great right after a procedure that makes it uncomfortable to sit.
The next day I got the call back. Good news and bad news. The good news is that the couple did show up so their appointment became available. The bad news is that the doctor had his own waitlist of people he's trying to get on the schedule. My girl said she advocated for me, saying we've been waiting a long time and that the appointment was all but promised to us. He apologized and asked her to apologize to us but apparently these other folks had priority. It wasn't all bad news: I got their spot which is in July. So it wasn't as soon as I wanted, but still sooner than September. Sweet! I also really appreciate that she advocated for us. She doesn't know us personally but still went to bat - I feel very grateful.
At this point I know that I need to get all the paperwork submitted right away so that if there is another last minute cancellation we don't have to scramble. I don't know what we expect him to tell us or what he can do, but I know that I don't want to keep trying the same thing and have the same results over and over. He may say there's nothing we can do but he may not; and for that it's worth the time and effort to go see him. Clearly he must have something to say if he's booking a year out. We'll see.
Shabbat shalom.
Wednesday, March 14, 2018
Over before it began: PUPO no more
At the end of February we had our sixth transfer. As we'd agreed, my husband and I didn't tell anyone. True to our pact, I didn't tell family, friends, or post anything about it. I did write and I have about 12 unpublished drafts about the journey.
It was going well until yesterday evening just after 5:00 pm when I started bleeding. It started with a huge gush of heavy, bright red blood and followed by large clots. There was absolutely no warning at all. Even though it was the first time that has happened, I knew immediately it was the end. I called the after hours emergency line and the nurse said to stay hydrated and come in in the morning. I didn't sleep all night and first thing this morning we went in to the clinic together. They took blood. Then they did an ultrasound. The doctor couldn't see a sac, and for how high my hcg was measuring it should have been showing clearly. It was all but over, we just needed to wait for blood results to confirm that hcg was dropping.
He couldn't explain why this pregnancy failed. He couldn't explain the massive bleed. He couldn't give me any reason for any of it. He wasn't unkind but he also didn't offer any reassurance or hope. Once again we were left alone in the room for me to get dressed and for us to pick up the pieces of our shattered hearts.
When things were going well we couldn't believe it. We didn't talk about it, we didn't plan or dream or think ahead. We were just trying to take it one day at a time; one test at a time. Beta 1 came back at 686 on my birthday. It was a wonderful present. Beta 2 came back at 2738 on Monday, which was four days later and normal doubling time. Then, out of nowhere, on Tuesday 3/13 I started bleeding. It was immediately a lot and it was traumatic. The gory details are in one of the drafts I saved.
I'm not sure yet when I'll post the drafts. I want to but I don't think I'm ready. I felt it was important to preserve the timeline for multiple reasons. Some of the posts are just so full of hope and I don't know if I can read through them in prep for publishing. Maybe I'll just post the raw pieces, if at all.
I think we're done with this clinic. We transferred all our healthy embryos. We've signed forms to discard any nonviable ones that aren't getting transferred. We've given them three years of our lives, countless dollars, and seven tries. They had their chance and they blew it. Our account is clear and there's nothing holding us back from switching. Part of it feels like giving up. Part of it feels like a fresh start without all the baggage and terrible memories of the horrible news we kept getting. I'm not planning to make any major decisions before we have time to process but it helps me feel better to think ahead. I guess I'm not yet ready to give up on trying, as much as part of me wants this nightmare merry-go-round to end.
I got to work on time after dropping my husband off. I said eff it to my healthy eating and had coffee and cookies for breakfast. We're both so sad. We're doing normal things in the hopes that if we pretend everything is normal then the sadness won't wash over and engulf us. As my husband put it when I texted to check in on how he's doing: "mess packaged in pretty wrapper." The call came just after 1 pm. Levels dropped to 1237. It's officially over.
It hasn't really hit me. Maybe because I'm at work, trying to get through the day even though my mind is a million miles away. Maybe it will sink in when I have to tell my family of yet another loss. In the meantime I tear up and quickly regain composure before my face blotches over to the point of no return. My heart is heavy and truly it makes me most sad that my husband is sad. While logically I know it's not my fault because there was nothing in my control to change the outcome, I still can't help feel responsible that it's my body that keeps failing us. I'm the one who is supposed to carry our children, and for some reason my body keeps expelling them before they've had a chance at life. We've yet to see a live heartbeat on one of our transfers.
I know we'll be ok. I know we've been through this before and eventually felt hope again. But it gets harder with each loss. It gets harder with each healthy embryo lost. It gets harder when beta numbers grow stronger only to spontaneously abort without any reason. We've literally tried every single thing we were suggested. It's disheartening. It's depressing. It's discouraging. How much more can we go through? How many more cycles? How many more years? How much more money and heartache before we either succeed or give up?
Today I have no answers. Only sadness.
It was going well until yesterday evening just after 5:00 pm when I started bleeding. It started with a huge gush of heavy, bright red blood and followed by large clots. There was absolutely no warning at all. Even though it was the first time that has happened, I knew immediately it was the end. I called the after hours emergency line and the nurse said to stay hydrated and come in in the morning. I didn't sleep all night and first thing this morning we went in to the clinic together. They took blood. Then they did an ultrasound. The doctor couldn't see a sac, and for how high my hcg was measuring it should have been showing clearly. It was all but over, we just needed to wait for blood results to confirm that hcg was dropping.
He couldn't explain why this pregnancy failed. He couldn't explain the massive bleed. He couldn't give me any reason for any of it. He wasn't unkind but he also didn't offer any reassurance or hope. Once again we were left alone in the room for me to get dressed and for us to pick up the pieces of our shattered hearts.
When things were going well we couldn't believe it. We didn't talk about it, we didn't plan or dream or think ahead. We were just trying to take it one day at a time; one test at a time. Beta 1 came back at 686 on my birthday. It was a wonderful present. Beta 2 came back at 2738 on Monday, which was four days later and normal doubling time. Then, out of nowhere, on Tuesday 3/13 I started bleeding. It was immediately a lot and it was traumatic. The gory details are in one of the drafts I saved.
I'm not sure yet when I'll post the drafts. I want to but I don't think I'm ready. I felt it was important to preserve the timeline for multiple reasons. Some of the posts are just so full of hope and I don't know if I can read through them in prep for publishing. Maybe I'll just post the raw pieces, if at all.
I think we're done with this clinic. We transferred all our healthy embryos. We've signed forms to discard any nonviable ones that aren't getting transferred. We've given them three years of our lives, countless dollars, and seven tries. They had their chance and they blew it. Our account is clear and there's nothing holding us back from switching. Part of it feels like giving up. Part of it feels like a fresh start without all the baggage and terrible memories of the horrible news we kept getting. I'm not planning to make any major decisions before we have time to process but it helps me feel better to think ahead. I guess I'm not yet ready to give up on trying, as much as part of me wants this nightmare merry-go-round to end.
I got to work on time after dropping my husband off. I said eff it to my healthy eating and had coffee and cookies for breakfast. We're both so sad. We're doing normal things in the hopes that if we pretend everything is normal then the sadness won't wash over and engulf us. As my husband put it when I texted to check in on how he's doing: "mess packaged in pretty wrapper." The call came just after 1 pm. Levels dropped to 1237. It's officially over.
It hasn't really hit me. Maybe because I'm at work, trying to get through the day even though my mind is a million miles away. Maybe it will sink in when I have to tell my family of yet another loss. In the meantime I tear up and quickly regain composure before my face blotches over to the point of no return. My heart is heavy and truly it makes me most sad that my husband is sad. While logically I know it's not my fault because there was nothing in my control to change the outcome, I still can't help feel responsible that it's my body that keeps failing us. I'm the one who is supposed to carry our children, and for some reason my body keeps expelling them before they've had a chance at life. We've yet to see a live heartbeat on one of our transfers.
I know we'll be ok. I know we've been through this before and eventually felt hope again. But it gets harder with each loss. It gets harder with each healthy embryo lost. It gets harder when beta numbers grow stronger only to spontaneously abort without any reason. We've literally tried every single thing we were suggested. It's disheartening. It's depressing. It's discouraging. How much more can we go through? How many more cycles? How many more years? How much more money and heartache before we either succeed or give up?
Today I have no answers. Only sadness.
Monday, August 22, 2016
On the Road Again
Our doctor is convinced that we have great quality embryos, good lining, and just need a bit of luck to get one to stick. According to him it's a numbers thing and the more times we try the more likely one will work. Sure, he has 20+ years of experience and multiple accolades in his profession, and maybe he's right. But I feel like I have to DO something.
We had three FET transfers. Three. Each one had a perfect uterine lining and a top quality PGS-tested day 6 blast transferred. Each one was perfectly timed and medicated per protocol. Only one stuck and even that ended in a chemical pregnancy.
In my mind, that is unacceptable. Some may say that if we were a "regular couple" that's the equivalent of trying 3 months in a row and doesn't it usually take at least a year of trying? To those people I say SHUT UP. Not really. I actually say: people trying naturally aren't timing it to the minute. People trying naturally don't know what their uterine lining looks like or its exact measurement. Trying naturally also doesn't filter out the embryos that are by nature incompatible with life or otherwise not in top shape.
It can't be anything to do with diet or health because women across the globe get pregnant all the time. Women who smoke, eat fried food, allergic to pineapple, addicted to crack, have 100 extra lbs on their body, with cold feet, or high blood pressure all get pregnant. So it's clearly something else.
I get conflicting thoughts when I hear of someone else announcing their pregnancy, especially another person in the IVF trenches. On one hand it's enormous joy and a secret glee: "If it can happen to her with all her issues, it can happen for me!" On the other hand I'm thinking that's one less miracle baby available for me. As if there's a quota of babies upstairs and dolling them out means less for everyone else to pick from. Both thoughts are insanely ridiculous, I'm fully aware of the absurdity. It's not only narcissistic to think that my future is directly linked to other people, but that also the world revolves around me and every act affects my life. It may be insane, but then so are superstitions and we still can't help ourselves, but I digress....
At our last wtf appointment, the doctor listed our options but not before starting with saying that he thinks the protocol is accurate and nothing needs to be changed. He offered doing an RPL workup, the ERA biopsy, or an endo scratch. He strongly advised against transferring more than one embryo because of the risk of multiples. He gently suggested that getting to a healthy weight is always helpful. I get that. I agree that it's true and I believe he said it because there literally was nothing else medically preventing a pregnancy.
So do we continue "just trying" forever? No. We will try something different every time! My way or bust!!!! Not really, but it makes me feel better to think I'm in some control.
First, we did the RPL workup. It's a simple blood test and there's no reason it's not part of the prelim testing done before you even start. Done. No issues found.
We had three FET transfers. Three. Each one had a perfect uterine lining and a top quality PGS-tested day 6 blast transferred. Each one was perfectly timed and medicated per protocol. Only one stuck and even that ended in a chemical pregnancy.
In my mind, that is unacceptable. Some may say that if we were a "regular couple" that's the equivalent of trying 3 months in a row and doesn't it usually take at least a year of trying? To those people I say SHUT UP. Not really. I actually say: people trying naturally aren't timing it to the minute. People trying naturally don't know what their uterine lining looks like or its exact measurement. Trying naturally also doesn't filter out the embryos that are by nature incompatible with life or otherwise not in top shape.
It can't be anything to do with diet or health because women across the globe get pregnant all the time. Women who smoke, eat fried food, allergic to pineapple, addicted to crack, have 100 extra lbs on their body, with cold feet, or high blood pressure all get pregnant. So it's clearly something else.
I get conflicting thoughts when I hear of someone else announcing their pregnancy, especially another person in the IVF trenches. On one hand it's enormous joy and a secret glee: "If it can happen to her with all her issues, it can happen for me!" On the other hand I'm thinking that's one less miracle baby available for me. As if there's a quota of babies upstairs and dolling them out means less for everyone else to pick from. Both thoughts are insanely ridiculous, I'm fully aware of the absurdity. It's not only narcissistic to think that my future is directly linked to other people, but that also the world revolves around me and every act affects my life. It may be insane, but then so are superstitions and we still can't help ourselves, but I digress....
At our last wtf appointment, the doctor listed our options but not before starting with saying that he thinks the protocol is accurate and nothing needs to be changed. He offered doing an RPL workup, the ERA biopsy, or an endo scratch. He strongly advised against transferring more than one embryo because of the risk of multiples. He gently suggested that getting to a healthy weight is always helpful. I get that. I agree that it's true and I believe he said it because there literally was nothing else medically preventing a pregnancy.
So do we continue "just trying" forever? No. We will try something different every time! My way or bust!!!! Not really, but it makes me feel better to think I'm in some control.
First, we did the RPL workup. It's a simple blood test and there's no reason it's not part of the prelim testing done before you even start. Done. No issues found.
Second, we agreed that spending the time and money on an ERA biopsy was worth it. There's no point in wasting precious embryos on a transfer if we have the day wrong. Even if we hear back that the timeline is correct, at least it we have peace of mind and not wonder the what ifs in case the next one fails.
Third, if the ERA comes back that the timeline is accurate as is, we will try the endo scratch. We have nothing to lose.
If the ERA comes back that the timeline needs to be adjusted, we will adjust based on the recommendation and not do an endo scratch in that cycle - you can change only one variable each time. Like a science experiment! With my uterus! How fun!
That's the road map. If we still don't get pregnant after that, we're back to square one and have to think about IVF #5.
Third, if the ERA comes back that the timeline is accurate as is, we will try the endo scratch. We have nothing to lose.
If the ERA comes back that the timeline needs to be adjusted, we will adjust based on the recommendation and not do an endo scratch in that cycle - you can change only one variable each time. Like a science experiment! With my uterus! How fun!
That's the road map. If we still don't get pregnant after that, we're back to square one and have to think about IVF #5.
Wednesday, July 13, 2016
Patience
Bloodwork from the RPL workup came back all within normal range. I would have been surprised if we got any other news since we never had any reason to believe otherwise. I'm still glad we did it now anyway and got a definite answer.
I also ordered meds and got the timeline for the ERA biopsy. Originally the first date they had open was mid-August. I have a patience problem as it is, but even more so having to wait so many weeks for a non-transfer, delaying a potential transfer even more. My nurse said she'll try for an earlier date if the schedule allows and an opening became available in early August so we got that date.
I'm trying not to stress about time. I know I have a patience problem and stressing about it doesn't help. I'm working on it. It's been a long year with a lot of treatment so what's another month for the ERA biopsy. I've gone back and forth regarding pros and cons so many times I've started second guessing its necessity.
The reason we're doing this test is to verify the "transfer window." There is a window between days 4 and 6 of your [medicated] cycle for an embryo to stick, so all transfers happen on day 5 per protocol. For some women, their body responds differently and their uterus is more receptive on another day. The ERA biopsy will give one of these results: receptive or non-receptive. If we get back a receptive answer, then we'll know that the protocol has the ideal time to transfer. If we get non-receptive, the results may point to a more optimum timetable and the doctor will repeat the cycle again based on the personalized window of time to implant. Supposedly you're supposed to repeat the test until you get a receptive answer. My doctor said that he's never had to do it more than twice on someone. The paperwork I've read on it has stats that show 74% of women get receptive the first time, and 26% get non-receptive with a recommendation for a suggested window. About 1% of women tested get back an answer saying non-receptive without any suggestion for a new window to try.
Either we find out I'm receptive on day 5 and we can transfer knowing it's the right day; or we find out that we've been transferring on the wrong day all along and hopefully get a new chance at success with a modified protocol more adapted to my body. My husband and I, as well as everyone we've discussed this with, all agree that it's worth going through this process to verify the transfer window. It's worth the time, the expense, and the delay for a chance at piece of mind.
Some days I don't know what's keeping me motivated. Some days I wish we can go back to "normal" life before treatment, or fast forward to post-treatment and on to the next stage of our life that includes kids. Sometimes being in treatment, and thinking about all the what-ifs and playing out all the scenarios and pros and cons of the next steps can be mentally exhausting. Even so, or maybe partially because of that, I am motivated and determined to do everything in our ability to make this happen. The rest is nature, luck, and maybe a little smile from Hashem.
I also ordered meds and got the timeline for the ERA biopsy. Originally the first date they had open was mid-August. I have a patience problem as it is, but even more so having to wait so many weeks for a non-transfer, delaying a potential transfer even more. My nurse said she'll try for an earlier date if the schedule allows and an opening became available in early August so we got that date.
I'm trying not to stress about time. I know I have a patience problem and stressing about it doesn't help. I'm working on it. It's been a long year with a lot of treatment so what's another month for the ERA biopsy. I've gone back and forth regarding pros and cons so many times I've started second guessing its necessity.
The reason we're doing this test is to verify the "transfer window." There is a window between days 4 and 6 of your [medicated] cycle for an embryo to stick, so all transfers happen on day 5 per protocol. For some women, their body responds differently and their uterus is more receptive on another day. The ERA biopsy will give one of these results: receptive or non-receptive. If we get back a receptive answer, then we'll know that the protocol has the ideal time to transfer. If we get non-receptive, the results may point to a more optimum timetable and the doctor will repeat the cycle again based on the personalized window of time to implant. Supposedly you're supposed to repeat the test until you get a receptive answer. My doctor said that he's never had to do it more than twice on someone. The paperwork I've read on it has stats that show 74% of women get receptive the first time, and 26% get non-receptive with a recommendation for a suggested window. About 1% of women tested get back an answer saying non-receptive without any suggestion for a new window to try.
Either we find out I'm receptive on day 5 and we can transfer knowing it's the right day; or we find out that we've been transferring on the wrong day all along and hopefully get a new chance at success with a modified protocol more adapted to my body. My husband and I, as well as everyone we've discussed this with, all agree that it's worth going through this process to verify the transfer window. It's worth the time, the expense, and the delay for a chance at piece of mind.
Some days I don't know what's keeping me motivated. Some days I wish we can go back to "normal" life before treatment, or fast forward to post-treatment and on to the next stage of our life that includes kids. Sometimes being in treatment, and thinking about all the what-ifs and playing out all the scenarios and pros and cons of the next steps can be mentally exhausting. Even so, or maybe partially because of that, I am motivated and determined to do everything in our ability to make this happen. The rest is nature, luck, and maybe a little smile from Hashem.
Tuesday, July 5, 2016
Follow up appointment
We left the appointment today feeling good about next steps. What our RE lacks in phone/email skills he makes up for in person. We talked for almost an hour this morning and at no point did I feel like he was distracted or impatient. He answered all of our questions and then some. Even though we didn't walk away with a lot of new information, we have a clearer picture of our options moving forward. The discussion included:
Overall we're feeling good about next steps. My husband and I are on the same page about wanting to do the ERA test. We're not totally in agreement about the endo scratch. Even though the endo scratch sounds like something I would try, I think it's pointless if we don't narrow down the transfer window first. He thinks it's a waste of time regardless. If we do the test and it comes back normal, at least we'll know we tried and will have no regrets moving forward with another transfer regardless of the outcome. If it comes back not normal then we'll get a possible answer as to why things weren't sticking. Either way it sounds like it's worth the pain, expense, and delay of another transfer. We can't do both: it's either the ERA or the endo scratch. Once you do the ERA you're mimicking the transfer so you can't throw in a monkey wrench into the system by introducing something new at the actual transfer. Since the endo scratch is unproven and we don't get an any answers from trying it, we're going to try the ERA and see where it takes us.
- Natural vs. medicated FET
- Endometrial Receptivity Assay (ERA)
- Endo Scratch
- Thyroid, prolactin, Vit D levels, etc.
- Hysteroscopy
- Transferring more than one embryo
- Immunologic implantation dysfunction (IviG)
- Additional embryo testing beside PGD
- RPL workup
- Getting a second opinion
- His phone skills
In a natural FET there are a lot less hormones but a lot more office visits because you have to be very closely monitored. The risk is that they do not do transfers on Saturdays or Sundays so if you happen to ovulate at a time when transfer would be one of those days then the transfer gets canceled. They don't do enough natural FETs to justify staffing everyone over the weekend and so there would be no one there to transfer.
The ERA biopsy protocol is similar to the FET. Birth control for a few weeks, followed by shots as a "pretend transfer." They mimic everything you do at a regular transfer then instead of transferring an embryo, they take a biopsy of your uterus and send it off for testing. They're testing to find out if the transfer window they use for you is in fact correct. If it is, test comes back normal and you can transfer next cycle. If not, repeat everything again for another cycle except delay biopsy for a day. The idea is to narrow down the most receptive time for your uterus to accept a transfer. I asked what happens if after the second time it doesn't come back normal? He said he would have to take it to the panel of doctors at the clinic since it hasn't happened yet. So at the very worst we'd be delaying by two/three cycles while we do this testing. It is also expensive and not covered by insurance ($850 each biopsy).
Endo scratch is where they irritate the lining of the uterus a week before transfer. The idea behind this is that the uterus starts to heal itself and makes it more receptive to an embryo. There isn't sufficient medical data backing this up. He offers it if we want to try it but says he's skeptical that it actually works. Even if a transfer works he says he can't necessarily attribute it to this. There are no known downsides to this - it doesn't delay a transfer and insurance covers it.
We reviewed all of my hormone levels and all are measuring normal with no changes from 6 months ago, when they were also checked.
I asked about his opinion on getting a hysteroscopy (sticking a camera into the uterus to take pictures) and his response was that the benefit was so small and the risk was so high that he doesn't recommend it. I have no symptoms to indicate that there's any issue; usually they recommend this for someone with unexplained bleeding. It's not worth doing this minor surgery where the risk of perforating the uterus or finding something that not actually an issue is much higher than the tiny chance of finding anything the HSG or transvaginal ultrasounds have been missing.
He says there is too much risk to advise transferring more than one embryo. There is a higher risk for premature birth, pregnancy complications, and possible stillbirth. The only pro is that it's better financially because you're saving one FET by putting two in there. He said that the embryo quality is high for both embryos and whether or not anything sticks has to do more with uterine receptivity than the number of embryos.
We briefly discussed IID with IviG therapy but it's so beyond anything I could need at this point that it was pretty much irrelevant. This is something that's offered to women who have gone through dozens of procedures with multiple losses.
There is no additional testing offered beside for PGD. If there is any chromosomal abnormality with the ones we're transferring (or with me or my husband), there has not yet been a test created to check it. We're literally doing everything we can to ensure healthy embryos.
As a way to make me feel like we're not leaving any stone unturned, he offered to do a RPL workup which is a blood test offered to women who have had recurrent pregnancy loss. This is generally only offered to people who have had multiple miscarriages before the 10 week mark and tests to find out if there are clotting issues which might interfere with the placenta growth. It's easily treated with baby asprin and lovonox but they need to know it's an issue in order to treat it. This isn't something he necessarily recommends to someone who has had "only" three failed FETs, but I appreciate that he brought it up and if it's just a simple blood test I'm happy to rule anything else out. Why wait for more losses if this is just a blood test and so easily treatable? Did that this afternoon and results should come in about a week.
He brought up getting a second opinion saying that if we want to see someone else that he doesn't hold anything against us or get offended. I'm not interested in starting over with someone new at this point, but I think it's good to hear he wouldn't take it personally if we did. I don't know that there's anyone better and at this point I think it's too soon to shop around.
He apologized for last week's hectic schedule which didn't allow him to speak longer. I told him that I completely understand I'm not his only patient but that when he does talk to me I'd prefer if he was in front of a chart instead of trying to wing it from memory. I wasn't trying to make him feel bad or get an apology - I honestly just want to be able to get accurate information when we talk. I feel better now that I brought it up. I think it was important to me to not let it go unmentioned because it was a big deal and I don't want a repeat.
Overall we're feeling good about next steps. My husband and I are on the same page about wanting to do the ERA test. We're not totally in agreement about the endo scratch. Even though the endo scratch sounds like something I would try, I think it's pointless if we don't narrow down the transfer window first. He thinks it's a waste of time regardless. If we do the test and it comes back normal, at least we'll know we tried and will have no regrets moving forward with another transfer regardless of the outcome. If it comes back not normal then we'll get a possible answer as to why things weren't sticking. Either way it sounds like it's worth the pain, expense, and delay of another transfer. We can't do both: it's either the ERA or the endo scratch. Once you do the ERA you're mimicking the transfer so you can't throw in a monkey wrench into the system by introducing something new at the actual transfer. Since the endo scratch is unproven and we don't get an any answers from trying it, we're going to try the ERA and see where it takes us.
This means that we're not transferring anything in July, possibly not in August either. So if I have the time anyway, I'm going to make an effort to use the time wisely working out and losing weight. Even 5 or 10 lbs off will help me justify the delay for the next transfer. I know I don't need justification, but for an impatient person such as myself, it helps keep my mind focused by having a tangible goal within my control. Exercising helps me feel good and eating healthy can only help. I'm going to set a goal for 10 lbs and reevaluate if I reach it before it's time to transfer (that should be my biggest problem!).
Subscribe to:
Posts (Atom)
Labels
#
(1)
#chroniclesofacoworker
(1)
#enjoythewait
(2)
#microblogmondays
(7)
#oneatatime
(2)
10lbs plan
(16)
2016
(1)
2017
(4)
2018
(1)
2ww
(17)
AC
(2)
acupuncture
(2)
adult
(1)
all or nothing
(3)
Amazon
(1)
anxiety
(28)
appointment
(1)
baby names
(1)
back pain
(2)
badass
(1)
baseline
(3)
beach
(1)
bedroom
(2)
benefits
(1)
beta
(7)
biopsy
(5)
birthday
(8)
blessed
(1)
blogs
(4)
blood pressure
(3)
bloodwork
(33)
book club
(1)
bugs
(1)
busy
(2)
cardiologist
(2)
career
(8)
carpe diem
(3)
CD138
(5)
challenge
(2)
changes
(2)
chemical pregnancy
(7)
control
(2)
cost
(2)
coverage
(2)
cramps
(6)
crime
(1)
crown
(6)
D&C
(3)
diet
(22)
dream
(2)
egg retrieval
(12)
embryos
(27)
EMMA
(4)
endo scratch
(5)
endocrinologist
(8)
endometritis
(1)
ENT
(1)
ERA
(31)
ERA II
(6)
eyes
(4)
Facebook
(5)
fear of failure
(4)
FET #3
(22)
FET #4
(26)
FET #5
(27)
FET #6
(19)
FET #7
(1)
FET #9
(1)
FET prep
(42)
fitness
(1)
food
(4)
friends
(2)
furniture
(4)
Game of Thrones
(1)
gassy
(2)
glucose/insulin
(2)
goals
(8)
guests
(2)
gym
(3)
halacha
(5)
healthy menu
(4)
heart
(2)
hobbies
(4)
holiday
(3)
home
(1)
home decor
(11)
hopeful
(13)
HPT
(7)
HSG
(2)
Hurricane Matthew
(1)
hysteroscopy
(10)
imwithher
(1)
incident
(1)
insulin
(1)
insurance
(12)
interview
(2)
island
(2)
Israel
(3)
IVF #3
(13)
IVF #4
(14)
IVF #5
(24)
IVF #6
(17)
IVF #7
(15)
IVF #8
(13)
IVF tips
(3)
IVF treatment
(42)
job
(3)
journey
(2)
Judaism
(1)
juggling
(1)
lining
(2)
loss
(2)
lucky
(1)
mail fraud
(2)
mattress
(2)
medication
(3)
membership
(1)
mental health
(1)
MitoScore
(1)
mole
(2)
money
(2)
moody
(2)
natural cycle
(1)
nesting
(1)
new york
(2)
non-IVF
(6)
November 2016
(2)
numb
(2)
olympics
(2)
p'ru urvu
(1)
pain
(3)
passion project
(1)
passover
(11)
path
(2)
patience
(4)
perspective
(3)
pesach
(19)
PGD
(14)
phase
(1)
PIO
(9)
plan
(2)
pop
(2)
pottery
(4)
prayer
(1)
pregnant
(15)
pupo
(20)
purim
(3)
reconstruction
(4)
remodeling
(3)
research
(1)
resolutions
(2)
responsibility
(1)
results
(21)
road map
(2)
roof
(1)
root canal
(2)
Rosh Hashana
(4)
RPL
(8)
sac
(1)
sad
(6)
Shabbat
(5)
sharing news
(1)
shavuot
(4)
shots
(1)
snow
(1)
social media
(2)
social media cringe
(2)
special
(1)
specialist
(3)
spending
(1)
spring
(1)
stain test
(3)
staycation
(1)
stress
(1)
sukkot
(2)
summer
(4)
support
(5)
surgery
(1)
Survivor
(3)
symptoms
(40)
Tdap
(1)
terrific trio
(1)
testing
(3)
Thankful
(3)
therapy
(4)
thinner in 30
(1)
thoughtless
(1)
thoughts
(22)
thyroid
(6)
timeline
(5)
tips
(1)
trigger
(2)
trip
(13)
TTC
(3)
TV
(4)
ultrasound
(20)
update
(8)
upgrade
(1)
vacation
(12)
varicocele
(2)
vegging
(3)
waiting
(26)
warm feet
(1)
Wegmans
(2)
willpower
(3)
wishlist
(1)
work
(9)
work politics
(3)
workout
(3)
worry
(13)
yoatzot
(1)
zika
(5)