I have so many posts floating around in my head, but for now….
When this happens:
What do you do when you fall to sleep hours ago and woke up wide awake in the middle of the night? Apparently, I’ll be writing a blog post. I read that a side effect of the prednisone is insomnia. I’m not sure if that’s what’s going on, if it’s nerves, or if it’s all in my head. Probably a combination of those three.
I had my blood work and ultrasound yesterday (Tuesday) morning before going in to work. When I was called back, I saw one of my favorite techs working. She recieved a promotion a while back and moved to a different office, but she was helping out at my office this morning. She is the one who has always called with the updates on the embabies, and that is what she is now doing full time for the clinic, so we briefly caught up on the phone last Friday when she called to let me know that one embryo was healthy. She shared with me that she missed that office, but was always happy to see names from The Woodlands, as she remembers many of the patients.
Dr. S was in the office today and was the one doing the ultrasound. While I was in the exam room waiting, I recieved a call from the place where I will be getting the infusion. Just as I answered, Dr. S and Michelle came in, so I informed her I’d have to call her right back. Lining looks good and it was a very quick appointment. I was back in my car in the parking lot within 15 minutes and called Dominique back. She told me the price of the infusion and that a nurse would be calling me later to set up a time.
Work was going well when I recieved a call from the nurse, Phyllis, who is with the infusion place. She understood that we were working against time, as this needed to happen within a day or so, and said that they would squeeze me in about noon Wednesday. The location is not the best down in Houston. In fact, I know of a place that is opening up an alternative peer group (sober activities) for inner-city teens in that area that no one has gone to due to safety concerns. It’s a good 45 minute drive from my house, with no traffic. I called them back to ask if I needed someone to come with me to be able to drive me home afterwards, but had to leave a message. They did not get back to me by the end of the day, but my mom offered to go along for moral support, as the infusion will take 2-4 hours. There’s probably safety in numbers too.
I sat in during the doctor’s appointments with the kids and their parents this afternoon. It was a rough staffing and we had a lot of tears. Sitting in your office attempting to redirect while also validating kids as they yelled profanities at their parents can be exhausting. Needed less to say, I was ready for my day to be over. I had recieved a voicemail from Rachel, a nurse at my clinic, telling me that although my lining looked good on the ultrasound, my estrogen level was 222 and they want it to be 300 by now. I was told to add a second estrogen patch and to continue the estrogen pill 3x/day. Es.tro.gen.
I’ve taken up about a half hour typing this on my iPad. Still not sleepy. I’ll update again tomorrow (today) after the infusion.
Yesterday was my oncologist appointment. I went in to work for a few hours before the appointment. Upon arriving to the busy office, I was prepared, having already completed my new patient paperwork. I waited just about 10 minutes before being called back for vitals. After that, I was escorted to an exam room to wait for Dr. S, who is the oncologist/hemotologist for the intralipid infusions. He came in to get some quick info, left to ask a questions and came back. It was a very quick appointment and he gave me a paper with doctor’s orders to take down to the nurses in the infusion room.
The room was full of hospital-type recliners and several had patients lounging while receiving their treatments. They are primarily giving chemotherapy at this location. I was called up by one of the nurses and they reviewed the protocol with me. It was explained that I would “brown bag” the IV, as their on-site compounding pharmacy did not have what was required for the protocol ordered by Dr. B in NY. I was asked to call my doctor to have the RX filled and then to call the nurses back to set up a time to come in.
Time is of the essence right now, as I began my estrogen pills and patches last week and needed to begin the infusion within the same week. I went to the parking lot and called my RE, who’s office was just across the street. After speaking with a nurse, she requested that I call NY to have them order the infusion, since they would know the exact formula. I called NY, but the IVF coordinator was not in the office at the time and would be calling be back around 3pm.
I was leading the adolescent group at 3 yesterday, therefore I had the other therapist join me so that he could take over while I took my phone call. At 3:40, I had not received a call. It was almost 5pm NY time, so I stepped out to follow up. The IVF coordinator was meeting with another patient, but knew I was waiting on the call from her and would be calling me back next. I received the call about 20 minutes later. I spoke to her and she said that as much as she would like to be able to call in the script for the infusion, she was unable to do so because she was in a different state and that technically they are consultants and not providing direct care over my case. She said they had worked with my doctor’s office before and had never really had a problem and directed me to call them back and if my doctor’s office needed anything from her, they could call her.
I called the nurse back and was transferred and on hold for about 15 minutes. I finally was able to speak to one of the nurses who said she would call in the script and would then call me right back. She called back about 15 minutes later. The other therapist had been in with what was supposed to be my group for 1.5 hours at this time while I was attempting to get this all straightened out. I had gone back in to let him know that he would need to finish group. I keep feeling guilty. I feel as though I am dumping my responsibilities on others. Others I work with have been trying to re-frame things for me and I agreed that if it was someone else going thru the same thing, I would help out, no questions asked…but it just feels different when its happening to you.
The nurse gave me a number to a woman with a home health pharmacy. The nurse was going to fax my records to this other woman, but suggested I go ahead and call her to find out how and when the infusion would happen. The home health lady told me that they would call back with a price the next day and that the nurses at this new location would call me to tell me what time to be at the appointment. With this particular infusion, they cannot do it at my house, they have to have me at their site.
It was just before 6pm yesterday when I recieved the last call. It was the nurse from my doctor’s office letting me know that everything had been faxed and that I would get a call from them the next day. As crazy as this process is, I’m glad that it is an option and that we have been able to pursue all of this. Even though some days I feel like I might pull my hair out.
I have been emailing the New York office since Wednesday. We have gone back and forth a few times. After my baseline appointment here in Houston on Wednesday, I made an appointment with an oncologist/hematologist Dr. G referred me to who will be administering the IV therapy. I will be meeting with him on Monday the 5th to review the protocol. Dr. S then contacted Dr. G to discuss my case.
I heard back from the ivf coordinator at the New York office on Friday and began to forward the emails to the nurses at the Houston office. On Wednesday, Dr. G began estrogen under the tongue 3x/day and an estrogen patch that is changed out every 3 days. The ivf coordinator sent the protocol. I was to begin Lovenox and prednisone with the estrogen on Wednesday, but we started it on Friday instead. The Lovenox is an injection 1x/day and the prednisone is a pill 2x/day. I’m also supposed to add Calcium 2x/day because the Lovenox and prednisone can weaken bones. Great.
Another injection was called in to a pharmacy in Massachusetts on Friday afternoon. This one is called Neupogen. It is to be administered 1x/day. This was an ordeal. I was at the salon for a trim and highlights (self-care is important) when I received a call from the Houston nurse telling me that she had contacted the pharmacy and that if I did not hear from them in the next 45 minutes, I was to call them. 45 minutes later, I was calling them. I was not on hold too long, but it took them a minute to find my script. We had to act quick. It was almost 6pm on the East coast and they had to get the order out to FedEx for a Saturday morning delivery.
This morning, we saw a FedEx truck drive by the house and I thought it was odd that it did not stop. An hour later I checked the tracking number and it said it had been delivered to its destination. It was not on our porch. I looked on all the porches in our cul de sac, but found nothing. It was about 50 degrees this morning and raining. I began to walk down our street and, 5 houses down, there was my package. It had my name and our address, but just at the wrong house. I knocked on the door to let them know I was taking a package off their porch, but no one answered. Just FYI…I may be on the Houston news in the next few days as a suspected package thief if the homeowners have cameras.
I was glad to have tracked down the delivery, as the medication was on ice and has to be refrigerated upon receipt. The hope is that the Neupogen will zero in on the immune disorders that may be contributing to my recurrent miscarriages. You can read more about that from the link two paragraphs up.
I’m still taking fish oil 4x/day, prenatal, baby aspirin, CoQ10, Vitamin D, and Deplin daily.
I am supposed to begin the IV intralipids next week. This is what I’m going to the oncologist for. My immune system is hyperactive and the intralipids should help normalize things. This is for the Natural Killer cells. Each infusion will last over 2 hours. I saw the orders from the nurse in NY which included a home-health nurse coming to my house. I’d rather go in to the doctors office. Pepper barks like crazy when there is someone new around.
In addition to going in to Dr. G’s office weekly for blood work and ultrasounds, I will also go in for lab work next week once I have been taking Lovenox for a week for an anti-heparin xa level. This is to let them know if I am on a prophylactic dose of Lovenox. I have no idea what they are referring to in the previous sentences. I’m just really good at copying the info from the protocol email. Need a nurse friend to help me out there. The blood thinner will continue until a beta test.
And the last thing. I will also need to go to a lab for fatty acids blood work. I’m tired of typing. This is the 4th or 5th update today. Here is a link to the fatty acid thing.
Promise I’m done for today.
I received the much anticipated phone call from my doctors office yesterday. They had the results of the 2 embryos that had been biopsied and sent to the lab for PGS testing. Of the two, just one was normal. Just like that we went from 4 retrieved, 2 biopsied, and 1 healthy.
This one will continue to be frozen, as we have our little boy that will be transferred later this month on the 21st. People have asked if we will transfer 2, but my doctor is very conservative and the fact that I have already had 2 transfers without a successful pregnancy means that we will just do one at a time.
I found out the gender of the baby. I was floored.
Its a girl.
I feel like these two frozen, healthy embabies are already a part of our family. I called Husband and told him that we had one healthy and asked if he wanted to know. He said: If you know I want to know. I told him it was a girl and he responded: No way! That’s awesome!!
He was so cute.
I was texting a friend today and she said that there is nothing like a daddy/daughter relationship.
We have both always wanted a boy first and then a girl.
God truly knows the desires of our hearts.
I had a panic attack Thursday. A full blown attack.
I was reviewing protocol, doctor appointments, and schedules with Husband on the phone as I drove to work.
Let me back up. From the moment I woke up, I felt off. I can’t really explain it, but it was not my normal. It was anxiety from the time I opened my eyes and stared at the ceiling that morning.
So, back to the drive to work…I was about a block away and I just started hyperventilating and became tearful. I told Husband: I think I’m having a panic attack. He told me to pull over. I didn’t. I was almost to the parking lot. Then I told him my head was all tingly. He asked where I was and I told him I was just pulling into a parking place. I was trembling, crying, rapid breathing, light-headed…all the symptoms I talk to my kids about.
Once I had calmed down and got off the phone with Husband, I called my boss, who was at a different location that day. She went through some breathing and visualization exercises with me. She told me to go to Starbucks. Caffeine was the last thing I needed, but I did call my mom. The crying began, but not a full blown thing again. I met her back at my house and we talked.
She had a meeting to get back to, so I chilled for a while at the house and then made my way back to the office. I had family group that night and already knew what I was going to do. Every time I thought I had regained my composure, something would set me off again. I gave instructions to my intern and the other adolescent therapist, apologized profusely, and then went to the grocery store to wander around in search of items I needed.
My mother in law came in to town for a meeting and was planning to stay at my house. We made dinner together, talked, and then watched Gilmore Girls together. It was exactly what I needed.
Work was much better on Friday.
I got the phone call we had been waiting for…
I turned 33 last week.
I was diagnosed with stage 3 endometriosis.
My thyroid level was in the 3 range and they want it below 2.5 for ivf.
I just completed my 3rd round of ivf and 3rd retrieval.
My tentative transfer date is 12/21 and if you add the ones and twos together, that makes two more threes. Stretching it? Yeah, that’s what I thought.
I think this is when I say: Third times a charm??
I hope so.
Husband is 36. 3 plus 6 is 9, which can be divided by 3 and then equals 3.
I have a lot to update. It has been a week since I last posted.
The plan is a series of posts today. Hang in there (she tells herself). 😉
We celebrated Thanksgiving here in the States last week. This was my year to be thankful for the kind acts of strangers. My sister and I were headed to my mom’s house and the guys were coming after us with the kids. We had to make a quick stop at the grocery store and as we were getting back into the car, Pepper ran out into the parking lot. I quickly went after her, leaving my sister behind.
Pepper had a great time running through the shopping center while I frantically chased after her. She was getting close to a busy street and I was really getting scared. The area we live has miles and miles of hike/bike/walking trails. As Pepper was running towards the street via the exit, a man suddenly appeared where the trail crosses. He was able to distract her by throwing a chip from the bag he was holding back toward the parking lot and away from the rushing cars.
I quickly thanked him and he continued on his walk with his bag-o-chips while I went racing after Pepper. By this time, my sister had joined in the chase as well. There was a nearby restaurant with an outdoor eating area that was surrounded by a fence. Pepper ended up trapping herself in that area and I was finally able to grab her and carry her back to the car.
As we were leaving the shopping center, I noticed that the local Starbucks was open. I mentioned what a shame it was as my car rolled over a speed bump. Just wait….
We made it to my mom’s house and I had this sneaking suspicion that my phone was not in the car with me. I looked for it everywhere. In my purse, all over the car, my pockets, but it did not take long for me to realize that it was in the parking lot. I still had adrenaline rushing through me from the incident with Pepper. I was a bit tearful about the stupid phone. I headed back to the parking lot, about 10 miles away.
I entered the parking lot the way I exited to back-track my steps. As I crept slowing along, I was soon back to that Starbucks where a woman and a teenage girl were waving me down. It was a bit bizarre, but I drove up next to them and asked if they had my phone. The teenager handed it to me and told me that had just walked up on it as it lay in the middle of the street, likely resting next to that speed bump I mentioned before. She said she was nervous when she picked it up, hoping that it was not broken. Sure enough, there is not a scratch on the phone. I thanked them several time and wished them a Happy Thanksgiving and made my way back to mom’s.
I called my sister told her I had my phone and couldn’t believe it. She shared with me that just after I left my mom’s house, the teen had come across the phone and saw a missed call, which had been from my sister when we were looking for it earlier. The girl swiped and called my sister and explained that they had found the phone and wanted to make sure it was returned. They waited at Starbucks for me and my sister had done such a great job describing what I was wearing and driving, that they knew it was me when I turned into the parking lot. Such a sweet girl with her grandmother!
I have a lot of other things to be grateful for this year. The referral to the Reproductive Immunologist and subsequent discovery of Endometriosis, a successful retrieval, finances to support this huge endeavor, and an amazing support system of family and friends. Despite having to add to the list of reasons we experience infertility, we now have a very specific protocol I will be following to ensure the best chance for a healthy pregnancy. I love my husband with all that I am and cannot wait until we have a child in our arms to love.