Tag Archives: surgery

Endometriosis Surgery – Check!

Where to begin? The past two weeks have been insane. Chalk full of unexpected blessings, changes, and trauma.

I flew to Gig Harbor, WA almost 2 weeks ago to have surgery by Dr. Mosbrucker, an endometriosis specialist, and Dr. Pai, a general surgeon she works with. My Mom accompanied me for the entire trip while my hubby took time off of work to be with the kids.

The surgery was expected to be 3 hours long. I was in pre-op, getting my IV placed by one of the nurses, when the anesthesiologist came in and introduced herself. She began to tell me, in her kind, nonchalant way, that I would be having the largest endotracheal tube placed down my throat, and it would be placed very deep into my left bronchial, in order to keep mainly just my left lung inflated while they operated on my diaphragm on the right side. She continued on to say, that, oh by the way, I would also need an arterial lined placed for the surgery (this was to be placed after I was asleep, but before the surgery started), and also a second IV. I didn’t have a huge amount of time to process this info, thankfully. I texted my hubby that I loved him, I gave my Mom a hug, and to the OR I went.

The bruise left over from my arterial line. Sometimes I think my insides are healing up faster than this yucky bruise.

Ironically, in the weeks leading up to my surgery, I had told a handful of people that if I made it out of surgery without a chest tube, I’d be happy. After all, chest tubes are super painful. And not only that, but it would mean that the surgeon didn’t have to perform a full resection on my diaphragm, leaving my thoracic cavity untouched. Ultimately, it would mean that the endometriosis hadn’t grown all the way through my diaphragm, and that the surgeon had been able to essentially “scrape” it off instead of cutting it out.

I had also hoped that I was completely wrong about all the symptoms I had been having up to that point. I had hoped that perhaps my endo wasn’t all that bad, and that maybe my surgeon could save my ovaries and uterus. I made a point to let her know that I was just fine with not having a hysterectomy, if she thought things were good enough to save it all. She said she would use her best judgement, and I was fine with leaving the decision with her.

Let’s just have a good laugh right now about how delusional I was about the status of my endometriosis. Let’s just get the details out there: My surgery was seven hours long, not 3. I had FULL thickness endo growing through my diaphragm. I did indeed wake up with a chest tube and resection of my diaphragm. My surgeon said I had more endo on my diaphragm THAN SHE HAD EVER SEEN (the good news is that it wasn’t in my thoracic cavity!). I had full thickness endo growing through my small intestine, close to the illeocecal valve, and so therefore had a small bowel resection. I also had endo on my colon, which was removed. I apparently had endo all over the place, so my surgeon made the decision to do the hysterectomy. There is one bright spot – the better looking ovary, my left ovary, was covered with a lot of endo, so she literally cut about half of my ovary out and sutured it back together. Apparently ovaries regenerate like livers, so it’s supposed to grow back. Therefore, I get to keep an ovary and do not need hormone replacement therapy.

Instead of staying in the hospital overnight, I wound up in the critical care unit for two nights and then was transferred to the med surg unit for two more nights. My surgeon wouldn’t let me leave Gig Harbor for four more additional nights, so my Mom and I had to book another Airbnb, switch to a later flight, and rent the car for four more days. It was not cheap to do this!

I don’t have a lot to say about the hospital stay except that I flooded my room while taking a shower. Major OOPS! I had put a towel on the floor and didn’t notice that it was covering the drain. All of the sudden I heard my Mom shout from the other side of the door “Emily! There’s water out here!” Enter the nurse, the charge nurse, the nursing aide, and environmental services to clean up all the water outside the bathroom (it was more than an inch deep). I was so mortified that I cried, but the nurse thanked me for giving them some excitement that afternoon.

As far as views from a hospital room goes, I’d say this one was pretty good.

When I finally got out of the hospital, the Airbnb we stayed at was really close to the water and they had a beautiful yard that we got to look at through a sliding glass door. My Mom was a wonderful companion and excellent nurse. She was working on knitting a sweater for my sister, and it was the most complicated pattern ever. But it kept my Mom occupied while I slept, or rested, or sat and watched HGTV with her. I was extremely boring to be around! She kept me fed, helped me get out of bed, talked with me, ran to the store for me, and was just generally great to be around. I can’t thank her enough.

I loved the view!

My Mom working on the sweater while we got some fresh air.

I called my kids and hubby twice a day and we video chatted each time, which was a huge blessing. I was gone from them 10 days, which is just about forever when your kids are little. I missed them so much. (I cried about that too.) My hubby always seemed to be in good spirits and things seemed to be going well with the kids. His Mom came over a few times to help out, and my sisters came as well. One of my sisters brought a meal, which was helpful.

I did end up at the ER a day after I got out of the hospital. I had a sudden migraine occur, and I’ve never had a migraine. After medicating, resting and icing, and with no success– I went to urgent care. After they learned of my major surgery they wouldn’t touch me with a ten foot pole. So we went to the ER where the ER doc insisted on a head CT. I knew they were going to force me into one and I was very prepared to refuse it until I remembered that I had gotten 4 Lovenox injections while in the hospital. And suddenly, a very slow leak or bleed in my brain sounded a tiny bit more plausible. The ER doc told me that if I did have a brain bleed and I refuse the CT scan, I would simply go home and die (I didn’t care for her much). She was pretty pushy, and I felt miserable. So I got the head CT, which ended up looking “perfect.” The nurse taking care of me pushed a med for my migraine way too fast and it gave me a horrible panic attack – my skin suddenly felt hot and I just wanted to jump out of my skin. It was a ROTTEN experience and by far the worst part of the trip. The nurse then gave me some IV Benadryl which helped negate some of the yucky side effects, but not all. I was very, very discouraged when my Mom drove me home from the ER late that night. After everything I had already been through, the whole experience felt traumatic. My ability to handle stressful things was pretty poor.

We did do something fun while in Gig Harbor – we rode on the ferry the afternoon prior to flying home. After going up two flights of stairs I was in pretty major pain, but it was a new experience with beautiful scenery. (I should add that my Mom discovered an elevator on the ferry after that!).

Mom and I on the ferry.

We finally made it home close to 11 pm Friday night. The next day I realized that I had a UTI – thank you hospital foley catheter! I mean, I understand why I had to have it (no one gets up and goes to the bathroom with a chest tube in place), but still, it was frustrating all the same to be back at urgent care, only this time in a different city. And I’m grateful for antibiotics, but I don’t tolerate them very well.

All in all, I had NINE incision sites (my Mom said it looked like I was in a knife fight) – and I have very little pain today. Things seem to be healing up quickly! My abdomen/pelvis feel GREAT. I have had food intolerance only one time so far, and even that it questionable. So – I feel very hopeful for the future!

 

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Thoracic Endo Options & Consultation Update

It’s 2:30 am and I couldn’t sleep because I was in too much pain. (I never was any good at sleeping when  uncomfortable.) My mind has been percolating this predicament I find myself in, and I’ve been weighing my options.

As I’ve blogged about before, I am fairly certain that I have thoracic endometriosis (endo on my diaphragm). Endo in this location is more rare and found only in women who have stage 4 endo – it makes up about 1% of women with endometriosis. I’ve had this peculiar shoulder pain for over a year now and didn’t make the connection that it could be endo related until last December. It was tricky to figure out seeing as I have shoulder pain almost all the time, to varying degrees. The day before my period starts the shoulder pain becomes severe.

This month, the pain has spread from not just my shoulder but now to also under my rib cage on the right side (same side as the shoulder that hurts). I’ve read that this is very common for women with thoracic endo. I’m pretty freaked out that the endo will grow through my diaphragm and into my lungs. I really DON’T want that to happen. I’ve read about ladies that have this – they get what’s called catemenial pneumothorax – basically a lung collapse due to being on their period. Super freaky. Some women have to be hospitalized for weeks due to this condition.

That being said – the only way to even diagnose this beast is through surgery. I’ve booked a consultation with one of the best surgeons in the U.S. to deal with thoracic endo. This surgeon coordinates with a thoracic surgeon. However, I took a deep breath when they told me my consultation date: 10/10. An 8 month wait – yikes. I started to pray “Lord, can I get in sooner?” They told me that their NP would review my records and that they would call me back at some point to let me know what her thoughts were. I wasn’t expecting a phone call any time soon, but I received a call a few hours later. “Our NP has reviewed your records and has decided that you need to get in sooner.” So now I’m booked for the middle of July! Thanking God! They also put me down as “high priority” for the cancellation list. So if someone cancels I’ll be among the top of the list of people called to get in sooner.

But now that the pain has spread, I’m sitting here and wondering if I can make it even until July. I talked with my hubby this morning about going on hormones of some sort to stop my cycle altogether until my consultation. Hormones really do a number on me – it’s pretty rough and in a lot of ways I think I’d just be trading one woe for another. I don’t think birth control would be a great option because it has estrogen in it and that can make endometriosis worse as the estrogen feeds it. I went on birth control for 9 days back in Jan for my IVF cycle and remembered that my shoulder hurt pretty bad that entire time. So that leaves progesterone. I read an email I wrote to my sister prior to my last surgery 5 years ago and at the time I was on progesterone. I wrote that I had constant headaches on it and that I didn’t feel like myself at all – I was super crabby and it was hard on my husband. Also it made my hair fall out. So that’s not really a great option either. However, I’m pretty sure that if I went on progesterone my shoulder would stop hurting. The endo may still keep growing through my diaphragm but I think that it would be much more suppressed and would grow slowly.

So I’m trying to weigh these options. Do I take progesterone and risk having an altered mood and deal with having a headache all the time (and baldness!), thus negatively impacting all my family members? (I’ve noticed that when Mom is doing well and energetic, the kids are happy too.) Or do I risk getting blood in my lung cavity? (I’m trying to find out how long women have had thoracic endo symptoms before they ended up with blood in their lung cavity, but I’m sure the variables are great.) I feel very inclined at this point to not take the progesterone as I highly value good relationships with my family and highly suspect I’ll feel miserable on the progesterone.

Perhaps this is unwise? I’m not sure. So please pray that I’ll have wisdom. And please pray my consultation will get moved up!!!

Well, now it’s 4 am and almost the entire family was up the last hour. Hubby was up (probably due to me tossing and turning for so long before getting up) and Josh had a low grade fever (he got his 4 year old vaccines yesterday) and runny nose. So I gave him a snack and water along with some Motrin. Only Rachel will be well rested today!

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The Mini Pill & The Mega Planner

I’m a planner. I love to think about the future and the different possibilities of what it may look like, and prepare for it. It’s pretty ridiculous to some people, and smart to others. It’s the way I like to function, if I can at all help it. Spontaneity is definitely not my thing (which is something I share at the risk of looking like a complete stick in the mud!). But it’s true. Thankfully, hubby doesn’t seem to mind too much as he is very analytical in nature.

Which is why, even though I am only 33 weeks along (at least I will be tomorrow–I like to round up), I am already considering the period between when I have the baby and when our next embryo transfer will take place. For most women who have given birth and breast feed, their periods don’t return until they stop breast feeding. But that is not always the case. I’ve heard of some women getting their periods just two months after giving birth, even though they are solely breast feeding their baby.

Although I have no idea what my body will do when the time comes, this is a concern of mine. If I am having a period, then I am risking getting another endometrioma and needing surgery. The very last possible time when I want to have to surgery is when I am caring for a newborn! Not only that, but surgery means more scar tissue and another rough go with pain if I ever get pregnant again.

I talked with hubby the other night about my concerns. I told him that one of my limited options was to take the “mini pill” (progesterone only) after I have the baby. Our conversation went something like this:

Me: So, I could possibly go on the mini pill after I have the baby.

Him: What’s the mini pill? That’s the same as birth control?

Me: Sort of, except without the estrogen.

Him: (Frowning now) I don’t know… even though you’ve had some mood swings being pregnant, it’s been really nice to have you off of birth control.

Me: What do you mean?

Him: Well, you’re a whole lot less hostile when you’re not on birth control!

Me: (Stunned) Wow. Oh, wow… Okay, well, that’s something to definitely consider.

So we have some time to pray about these things. My husband doesn’t want a hostile wife, and I don’t want to be that wife! But I don’t want surgery either- and neither does he.

I’m realizing that sometimes life comes to this– there doesn’t appear to be any “great” options on the table and we must ask and trust the Lord through it. Actually, when it has come to dealing with endometriosis, it has seemed that there has never been any “great” options on the table. And yet, here I am– miraculously pregnant, in spite of stage 4 endometriosis, and after thinking several times that the best route for me to take was to have a hysterectomy. I can only thank the Lord for that, and remember how He has made beauty out of ashes in my life. I can trust Him for my future.

So there you have it. More insomniac 5 am ponderings from me. 🙂

On a completely new note, our fridge is fixed! Hubby was able to fix it with an inexpensive part. We are so thankful to the Lord for this! I am really enjoying not living out of ice chests anymore. I’m praying for a similar miracle for the leaking head gasket in our car. I would say that I don’t know for sure that it’s leaking, except for the fact that I can smell burning oil every time I get out of the car after driving it. Definitely not a good sign, but as a good friend reminded me the other day, anything is possible with our God.

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A “But Not” Moment

Last week at my ladies Bible study, we decided to have an Easter dinner celebration together and, prior to taking communion, we individually shared what we loved most about Easter. As my turn to share approached, I began to think of the past month and realized how much it reminded me of Easter, a universe-changing event that didn’t result in what first appearances initially concluded to.

Let me explain. The past month has been comprised of 2 parts: One really awful, discouraging week filled with despair and sorrow (you may have read my blog post during that time)– followed by three weeks of continual encouragement, delighting in the Lord, and in short: HOPE. I cannot emphasize enough how much the Lord has carried me though this time of trial and struggle. After my bad week, the Lord really convicted me that I was starting to sound like “Ye of little faith” and I had to repent of my shallow faith, my inability to even pray in faith during that time. Since that time, the Lord has given me tremendous hope and peace. It is a glorious place to be.

This brings me to Easter. How many times have we been trapped in a dark place, where the future looked bleak and all hope seemed to be lost? This was the day our Lord was crucified. Darkness covered the land. He had died and that was that. Hope was shattered. When our Savior said “It is finished” we didn’t understand what that meant. All we saw was the mangled body of our Lord being put into the grave. We didn’t understand that all we needed to do was trust, and wait. In three days our Savior would rise victoriously from the grave and defy death. He would reign and we would be be made righteous through the death that He suffered, hanging there on that rugged cross. We didn’t know there was such a spectacular display of Christ’s obedience to the Father and love for us.

Over a year ago, I was out walking and listening to a podcast. As I walked, I listened to a pastor teach about the “But Not” Moment. He’s referring to 2 Corinthians 4 when Paul writes “We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed.” We may feel crushed, we may feel afflicted, persecuted, even struck down — but there’s always a “but not” moment coming! A moment when we see the Lord carrying us through these trials, when we see Him showering us with His love. We just have to wait for it.

Speaking of waiting and trusting through adoption and my health, we still haven’t heard anything from our adoption agency. However, in a huge answer to prayer, my surgery is going to be April 19th, not the end of May like we had previously been told! Additionally, I haven’t been in too much pain the past week, and that is also a big answer to prayer. The Lord has surrounded me with countless people these past few weeks who have encouraged me to keep looking to the Lord, to keep praying in faith. I am so thankful. And now it is my turn to encourage you, to be the one to help you keep pressing on. Because while today may seem hopeless, a but not moment’s coming. We just need to wait for it.

Happy Easter!

 

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Heart Sick

Hope deferred makes the heart sick, but a desire fulfilled is a tree of life.

Hoping is a dangerous business. Especially when it’s for something you desire above anything else. I find myself in a continual paradox — how do I remain hopeful, and at the same time find peace and contentment with my current situation? It seems the only way I can find peace is to forget that getting pregnant was ever an option.

I cried a bucket full of tears last week. I had hoped, prayed, and done everything I could to remain off of birth control and still stave off this endometriosis. My hope that I’d get pregnant soared higher than it had in many months. And, at first I did really well. I had two really great months that were essentially pain-free. Until February came along. And now my nemesis– that is, this daily endometriosis pain that ranges from dull to sharp, as well as indigestion, is back with a vengeance. Even still, my deepest concern is that another cyst is present, threatening yet another surgery in the near future.

All of this will have to be confirmed with an ultrasound. I have an appointment with my doctor this week. On my birthday. Although I love my ob/gyn, my track record with ob/gyn appointments have never been an uplifting experience. If only she could give me good news (for just once!). Even when I try to brace myself for the suspected bad news, I still usually leave with tears in my eyes. If I’m to be honest, I’m dreading walking into her waiting room and taking my seat among all the pregnant ladies waiting to be seen.

Throughout all of this, I continue to pray and persevere in waiting for our precious adopted baby to join our family, hopefully soon. I, as well as other close friends of mine have all had dreams about our adopted baby! It isn’t reality yet, but it feels like a glimpse into reality for just a moment, and I am grateful for that. It spurs me on to keep praying… and to keep hoping.

I lift my eyes up to the hills. From where does my help come from? My help comes from the Lord, who made heaven and earth.

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