Skip to main content

Waiting, impatiently

I am a terribly impatient person. I know this about myself, but it doesn’t make the wait any easier. Lately, I feel like that’s all we do is wait.

We wait on insurance, we wait on the doctors, we wait for another positive pregnancy test, we wait to do IVF.

Sometimes I think God thinks he’s quite funny – making one of the most impatient people on this earth wait so much. I know it’s a lesson. I know it’s supposed to teach me to be more patient. But that doesn’t mean I have to like it!

So where are we?

Well, Reid is officially listed on the liver transplant list. Thank God. Big step done. He was listed on June 8th with a MELD score of 11. Which is low. He has not been classified as “low MELD in need” yet, which we really hoped for. We need to set up a meeting with the transplant coordinator to figure out if there’s anything else we can do to get him listed as such. We did get a packet of information with requirements in order to maintain his status on the transplant list. Some of them are no brainers – no drug use, no smoking, no drinking. He will have to meet with the hepatologist at least every 3 months, and go in for regular blood work. We have to keep a 3-ring binder up to date with all of his medical records, and he must keep a current list of his medications on him at all times. And we must attend a liver transplant listing class. His mom and I will also have to attend a course to be caregivers after the transplant.

I’ve mentioned that we’re going to go up to Indianapolis to get listed up there as well. But we’re waiting on the insurance company to authorize a second evaluation. Waiting. I’m ready to get that next step done. I want to know what the chances are up there, and get him listed. I want to have our next option set. Speaking of other options – we met with Reid’s GI doctor last week and he mentioned the possibility of a “living donor” as a Plan B. What?! We’ve heard from the beginning of this process that wasn’t an option. But now it’s a Plan B? Obviously, we want to get more information on this. So it goes on the list of questions for the hepatologist (and we’re doing some research on it in the meantime). As soon as we know this is truly a possibility, we’ll start getting those tested that have offered to donate. If we end up needing to go with the “Plan B”, I’d like to have that person set up and ready to go. More information to come on that topic!


As far as the wait to be parents… that’s also frustrating. When we first learned of Reid needing to be on the transplant list, we put our journey to parenthood on the back burner. We knew we needed to focus on getting him listed, and figure out what this process is all about. We were overwhelmed as it was just thinking about that. But being parents is also very important to us. You don’t just say “oh well, guess we’re not doing that anymore.” As soon as we learned of Reid’s great chance of developing cancer, we froze 3 vials of his semen (at the doctor’s office, we don’t just have that stuff sitting in our freezer). We applied for a grant for IVF. Unfortunately we found out a couple weeks ago that we were denied the grant. I’m not super surprised, but still a little disappointed. So for now we see what the future holds. And if that future does not hold a healthy natural pregnancy in the next few months, we will start the IVF process in November. Since we’ve learned more about the liver transplant process, we are realizing that Reid probably won’t get a liver soon. And we have absolutely no control over that timeline. So who knows? I have had many (many, many) conversations with God about this. We have no way of knowing what the right timing is for us to have a baby, and what the timing will be for Reid to get a transplant. We do know that my egg count is very low for my age and only diminishing by the year, and we do know that Reid needs a liver soon in order to avoid cancer. But we can’t do anything about either of those. Even if we end up doing IVF in November, that’s not a guarantee that we get pregnant. So we’ll see. For now, I’ll just be over here waiting. Very impatiently! 
Labels:

Comments

  1. UnknownJune 21, 2017 at 9:05 AM

    I'm an IVF/FET queen, unfortunately. When you get to that process, if you need a buddy to vent to, I can be that girl.

    ReplyDelete
    Replies
    1. Abby June 21, 2017 at 9:11 AM

      Thank you! I will definitely put you on speed dial when we get there ;)

      Delete

Post a Comment

Popular posts from this blog

Reid's health - Hospital stay #2

When I started writing this blog, it was dedicated to one topic – infertility and pregnancy loss. I guess that’s two topics, but very closely related. I did not think the type of miracle I would be impatiently waiting for would change. We now need a miracle for my husband, Reid. A month ago I shared that we were in the hospital and he had cholangitis. At that time, we knew that it meant his Primary Sclerosing Cholangitis (PSC) – an inflammation of the bile ducts in his liver – was progressing. But we weren’t sure by how much. So we had follow up appointments and procedures scheduled with his doctors. Next Tuesday he was set to go have a Spyglass procedure so we could see where he was. He had been feeling significantly better after his last hospital stay, and we thought things were looking much better. Early Wednesday morning he woke me around 3 a.m. with liver pains (yes, unfortunately he actually knows what liver pains feel like). We decided to come into the ER, given his last si...
17 comments
Read more

After the Storm

I’ve stared at a blank page on my screen several times over the last few weeks, trying to find the words. Today I’m committed to sharing, no matter how those words come out. So please bear with me. Over the last few months, I’ve dealt with some serious anxiety. And I’ve avoided sharing. Because I had babies recently. And often the response is, “You’re a new mom, it’s normal to have anxiety.” And that’s true. It is normal to have “new mom” anxiety, and to have a new level of stress that comes with raising tiny humans. However, what I’ve been dealing with is so much more. I wake up in the middle of the night with a pit in my stomach and have to catch my breath. I often think about losing my husband or one of our babies, and I spiral into a pit of anxiety. Every time I walk up and down the stairs with a baby in my arms, I am anxious that they are suddenly going to throw themselves out of my arms and go over the railing. If Reid doesn’t do something for the babies the exact way I wou...
1 comment
Read more

One Month Liver-versary

Today marks one month since Reid was wheeled into the Operating Room for his liver transplant. One month since our lives changed forever. That was the best day, but I’ll be honest – it was also the hardest day of my life. I don’t think we were fully prepared for the emotions that would surround that day. And it’s just now catching up to us that this happened. One month ago he received the ultimate gift. He received the gift of life. The gift of not living with his disease, Primary Sclerosing Cholangitis, and all of the symptoms that came with it. The gift of not having to worry every day that cancer was taking over his liver. The gift of looking forward to watching his babies be born, and not having to worry how long he’d be around to raise them. The gift of no longer wondering whether he would ever get the liver transplant he needed. An absolutely priceless gift. I don’t even know that I can properly vocalize the emotions we felt in the 33 hours leading up to him being taken bac...
Post a Comment
Read more