6.29.2012

My Time in Omaha-Peeing My Pants, Poop on the Floor and, eventually, the Results

I will try to handle this in sub topics for those of you that don't want/need every detail...

Regarding the Cost...I was happy I was sent a run down of the charges from PPVI ahead of time with my appts and initial paperwork.  I do not like surprises.  We knew we were fortunate to have in network coverage, so we were going regardless of cost, but I didn't think it would be quite as much as it was and so learning this allowed me to break the news to Craig before the bills started rolling in.   Our coverage isn't as good as the first time I went down (I used to have 90% coverage in network after a $500 deductible with a $1500 out of pocket max-last time I had no problem meeting this, but I had the ultrasound series and the hormone series done as well).  This time we have 80% coverage and a $3k out of pocket maximum.  We have $1700 left in our flex account (so we can use that medical expense money pre taxed) and I thought that would close to cover it.  Haha.  Not exactly.  The bill from Hilgers that showed my 20% said $880 if they lasered endo.  But the bill from Creighton (I had to call specifically to get these numbers) were astronomical.  For example, one procedure, the hysteroscopy I think, was $11k.  That may not have been my portion, but you do the math. That was one thing of several.  So...we skipped the details and dear Lynn cut right to the chase.  I had barely touched my deductible.  The $3k is on top of that.  I was definitely hitting the maximum.  So my question to you all is...what else should I be seeking to get done this year?!  Insert husband's small heart attack.  Now, fyi, Creighton gives you 10% off of what you pay within 5 day, so there you go.  Where else are you gonna make 10% these days?  I know our bills are nothing compared to what you out of network and out of country folks are dealing with, so I won't dwell on this.  I will say that out of country, I would do it again.  I would.  Hands down.

On being there in general...I must say, I wasn't worried about the surgery really.  That may seem weird, but I will do my best to explain to you the range of emotions I was going through.  I was back.  in omaha.  With my children.  Rewind to 6 years ago, no idea if I would have children.  And now I was back.  I honestly know that if we can't have more children, we have already been blessed beyond words.  So I guess that took some stress and anxiety away.  I also just knew this was where I needed to be and I knew how blessed I was to get to be there.  We drove just three hours to get there, so I am grateful to be so close.  I desperately wanted to go to the celebration they had at PPVI but couldn't.  This was my time.  To say my thank you's.  To introduce my babies.  My "reunion" started a little earlier than expected, at my pre op appt for the hospital.  Of all things, Nina remembered me, knew I had longer hair, a different last name, knew my story (I had shared it with her last time), remembered that she found my murmur (I have 3!).  What a joy to share what has happened since I left Omaha.  Her sister who lives 2 hrs away is also now a patient of Hilgers.  I have a strong hunch she didn't know about Hilgers until I told her and that is why her sister saw him, but that is just part of my vague memory and I didn't realize it until after I left so that is unconfirmed.  I left flying high and kept hearing my mother in the back of my mind telling me to come down off the ceiling.  I was flying high and talking fast!  I wanted to kiss everyone I encountered there and the tears flowed easily as I drove from Creighton to my pre op ultrasound at Pope Paul VI.  I did call my mom and TRIED to pull myself together.

The ultrasound was supposed to be with Jeanine, but it was with the new girl.  Young, cute, heart in the right place, knows she has the best job ever, I loved sharing our story with her.  Then on to my appt.  I wasn't sure who it was with there, and then I saw Dr. H.  Yes, I was a little freaked out to be in the same room with him.  Seriously.  I wasn't sure if my appt was with him or Dr. Kargas (sp?) but it was both.  Hilgers was first and he has a doctor from Mexico shadowing him.  I told him my mind would be mush with him in the room, but I swear the Holy Spirit took over and I was brave and succinct and articulate like I haven't been in the last 20 months.  Thank you, Jesus.  It felt so good not to be tongue tied!  I laughed at the thickness of my chart and was told it was 2 of 2, haha.  I was able to recap my story for him, and even though he knew it in general, it was nice for him to have a succinct summary (yes, me succinct; now you know it was the Holy Spirit!) and you could tell he was thrilled to hear it and have the other doctor hear it as well.  I really enjoyed my time in the room.  Of course we bonded about how the pill is the cure all for everyone I know, how ob/gyns have defined life conveniently after implantation, frustration with the HHS mandate and how people think pill=healthcare, etc, and how evil and insidious infections are.  He told me that 20% of his patients are positive for infections, but 60% respond positively to antibiotics.  He thinks there are simply bugs out there we don't know about yet.  I mentioned my desire to have the surgically trained Napro docs distinguished in some way on the website.  He has felt that way too, and expressed that before, and is working on it (but seriously how long does it take-add a star or something, lol!).  He is also working on the phone ap and confessed he received a package to start it recently but had been busy.  He gets a pass.  The man is crazy busy.  I mentioned a little frustration about people not getting the full benefit of Napro when they don't take advantage of mailing in the blood work and he completely agreed that it was a major part of what they need to do their job.  Its explained in his text book and he stresses it to everyone he trains-that was new to me.  I know it is expensive folks, but it is so necessary to get the full benefit of what he does. He said nice things about how he is always impressed at what a smart group of clients he has so I wanted to pass that on to all of you.  When he left, I felt set with the plan we had for the next day.  I got to see Dr. Karges as well and tell her my story (Dr. H asked me to).  She was wonderful.  She relocated her family to Omaha and worked under him a year.  When she goes back she is it for Texas and they are lucky to have her.  Her time is almost up so Texas, here she comes you lucky dogs! 

Surgery Day...What to say?  This is the time I began to think about how my dear friend stopped breathing during the meds used to calm her prior to anesthesia-this happened just one week before my surgery.  That was my only nervousness and I still knew it was rare and kept it pretty much in check.  I took my time to stress with everyone that I get crazy nausea with anesthesia and CANNOT take narcotics. I have learned these things the hard way given I have had 5 eye surgeries, 2 D&Cs, 2 cysts removed, and this was my fourth laporoscopy.  Yeah, I guess this is what I do in my spare time!  They did all the things that worked well last time PLUS a motion sickness patch behind my ear. Which was great except it did totally dry me out and I could not swallow crackers without chugging a ton of water.  They put these like, support hose things on to prevent blood clots, and they also had me wipe down again with those crazy wipes.  But I knew I was in good hands and they put up with me desperately wanting my kids in the room even before the IV.  I just didn't want the only hr they were there to be dh chasing them in the waiting room.  So they came back and all was well. Charlie didn't even notice the IV (he was on the other side), but he has seen me get plenty of blood work.  (We did prep him a lot and got pearls of wisdom from him such as "mom, if they give you a shot in your belly button, run!")  The kids were actually really good in the room and entertaining and distracting for sure.  Then back I went.  They didn't tell me they were giving me something to relax until I asked because the room was moving as I switched beds.  I am glad b/c if it was what Nan had it would not have relaxed me!  Before I knew it, it was over.  I had zero stomach pain that day (I guess they numb it up good), but that night the shoulder pain hit hard.  First right, then left, then right again.  I was told to sit up 45 degrees and use ice packs and that was the only thing that helped.  I never did really get too nauseated.  I remember women saying they couldn't leave the hospital until they went to the bathroom.  I thought that meant a bowel movement, but am glad that was not the case.  I have a tiny bladder and peed almost immediately out of recovery (all that IV fluid, I am sure).  But a bm, well that finally came tonight-a full 72 hrs post pre surgery enema.   And if that is TMI for you, well then you probably are not in the right place :)

Surgery Results...The next day I brough the whole family in for results.  Dh knew to take the boys out if I couldn't hear, but again, they were super good which is crazy.  They did have each other though, usually all the entertaining they need.  And cheerios.  Pretty sure we left a few of those crunched everywhere we went.  Anyhow...there were some unexpected results. I wish I had details of my last surgery on my blog, but I don't.  I knew this time they would likely find endo, but not a ton.  The soreness I experienced hadn't been back very long. They found 3 spots and lasered them.  They also found a micropolyp (associated with infection and/or inflammation) and a cyst in the cervical canal (which was inflammatory in nature).  He found a mini/accessory fallopian tube-crazy right?  He said it is common in women with endo. They also found, in general, a lot of inflammation on the wall (they can only treat with abx b/c surgically it would cause too much scar tissue)-do you see a theme here people?!  Inflammation can be from endo or infection so not a lot of answers on that one but consistency is clearly my middle name.  Hoping the results of the cultures will clarify the culprit.  They saw spots from previous lasering, but not a lot of scar tissue, which was good news.  Now for the 2 pieces of shocking news (to me at least).  First of all, my tubes were blocked.  What?!  Yes.  I got confused on the details because it sounded contradictory, but he couldn't get the dye through at all and they were blocked, but then he did eventually with a different technique.  They are open now, yet he couldn't get the wire through?  This sounds like Alive in Hope, so if T or anyone has clarification on this, I would appreciate it.  But I am sure it is either infection or endo related because that is the theme in my life.  And secondly, I have an abnormality that is assosciated with 2nd trimester miscarriages.  Its a large septum.  I suck at anatomy so he drew a triangle pointed down and then another triangle inside it attached at the top (flat edge).  He said the space it is taking up can affect the baby as it tries to grow.  It is associated with miscarriages around 16, 18, or 20 weeks.  Ladies, can I just tell you how important it is to have a lap-I learned so much!  They are not just for folks that suspect endo.  I think they are a good idea for anyone with infertility, they are meant to be exploratory in nature and IF is as good a reason as any to have one done IMO.  I know it is surgery, and no one wants unnecessary surgery, but exploring is necessary when questions are unanswered. He said that any ob/gyn that worked with me would need to do frequent ultrasounds and keep an eye on my cervix around that point.  I think the treatment is a stitch (cerclage-anyone here need one of these?).  I have comfort knowing that for whatever reason, it wasn't an issue with my 2 kiddos here (and the miscarriages I had were earlier, with TEBB cycles and good prog so we are still confident they were due to infection) and therefore there is less chance it will be in the future.  I seriously can't imagine a 2nd trimester miscarriage.  Someone would have to commit me.

On the logistics of being there with children...let's see, one room, 2 adults, 2 young children. Hmm. I don't know how you cosleepers do it, maybe it is because you start them out doing this early, but I don't know if even that would have helped. My kids have never really been a good match to sleep with us. Charlie will literally say, you can go back to your room now (we do some snuggling with him in his bed, but just for a minute). lol. And he is a talker. So anyway, we had Charlie in one bed, dh and I in another and AJ in the pack and play. Since the world series was going on there, and then after that the Olympic swim team trials, there was NO ROOM AT THE INN! Eventually we got a hotel (two, dh had the pleasure of changing hotels with both boys while I was in surgery b/c our hotel didn't have a 3rd night) but our hotel had none of the amenities that would have made it go smoother. Like location. Or a microwave. Or a fridge. Or a hot breakfast. Heck, continental would have been nice. Nada. So I packed. And packed. And packed. I organized. I printed off directions from every which way and researched kid friendly things to do. I packed swimsuits and bouncy balls and a entire thing of toys (heck, they play well with them on their own at home, why not at a hotel?) Let's just say if we could have kept the luggage rack wheely cart thing (why yes, that is the technical name for that), we would have. That was prime entertainment. And the telephone, unplugged. AJ enjoyed spilling powdered coffee creamer on the hotel carpet and then spent the next 24 hrs there sneaking licks of it. Ewwww! Rock star immune system-check. And flushing the toilet was big fun for him, as was unwinding toilet paper. He could open the doors there thanks to the long doorknobs. The schedule went out the window and the naps were all off. Charlie alternated between fake snoring and every possible attempt to engage us in conversation. AJ slept fabulously in pack in play in the pitch black bathroom (we had a handicapped room for the first hotel) when we finally got to town and to bed after a late dinner that next night (my appts ran long with all that talking), but that presented a bit of a problem. Let's just say I wet my pants one night and dh peed in a cup. No lie. Okay, now realize that I needed do an enema pre surgery. What did that look like? Wheeling AJ out of the bathroom asleep. Administering it laying down on the bathroom floor-both 'approved" positions were laying down-on towels of course. Using the bathroom. Showering. Wiping myself down with those nasty antibacterial wipes. Go to get dh to do my back and he is sound asleep. Because what else is there to do in a dark quiet hotel room with all the lights off at 10pm. Something about laying on that floor made me all too aware of how much I probably needed those nasty wipes, but I didn't like how dirty I felt having to use them. Dirty times 100 even post shower. The next hotel we had didn't give us a handicapped room so that was probably the worst sleep ever for me and kids (post surgery), but we all managed and there was plenty to laugh about. (I go to pick dh and kids up after pre op appts and receive this text-"C just pooped on the floor." Um, evidently potty trained for a year doesn't mean we don't regress at a totally foreign place (referred to repeatedly as the Cozy Cone by my Cars loving child, his only previous hotel/motel experience). Shockingly, the kids were not crabby at all despite the crazy schedule. Example-they woke an hour earlier (at 6am), never took a nap in the new hotel, and went to bed about 2 hrs later than normal. We really squeezed in the activities too (arrived Monday pm, Tues 9am-1pm zoo, Tues afternoon all my appts while they napped, Wed one of those bouncy inflatable places before my surgery which was scheduled for noon (yes, I starved. It didn't start until 1:45pm actually!), and we even hit the children's museum after my post op (there were lots of benches and I let dh do the running and lifting). We headed home after that since dh wasn't able to get Friday off (today. My mom came and stayed with me).   They were clearly happy to be back in their own beds because C took a 3 hr nap, ate dinner, and went back to bed; AJ had to be woke at 8pm for dinner and was easily put back to bed. All in all, it was a pretty great trip, and like I said, plenty to laugh about when you throw the kids into the mix.

Back home and feeling alright...So that's it.  It was plenty of news, as you can imagine, and I am ready for life to be dull again. I am fine with all the diagnoses.  As usual, I feel better to know what I am dealing with and attack it head on.  I wasn't expecting to get the green light to ttc again so soon, but here it is.  Not this cycle (I am on CD 6) BUT NEXT.  Again, I just feel like we are plugging our nose and jumping.  If we stand around analyzing this too much, we may just stay on the ledge and what fun is that?  So here we go again.   Stay tuned...But first things first, does anyone know how soon I am allowed to be intimate?  The pelvic rest box was checked but it said f/u with doc or X weeks and that number was blank.  Obviously my f/u was the next day, I didn't think to ask Dr. H about it, figured it would be in my discharge instructions.  Just curious. 

Some bad news from friends...Completely changing topics, today has been a funk due to some really bad news I received from 2 dear friends.  First of all, my friend Nan underwent her double masectomy last Wed.  We are grateful that her scare with anesthesia turned out alright and was reversed quickly, but SCARY!  But now, as of today, those lymph nodes they expected to be okay ARE NOT.  It has spread. She will be doing radiation.  Of which her mom died of (not from cancer, she was cancer free, but the radiation had done bad dammage to her lungs).  We are devastated by this news.  We were flying so high, the chemo had shrunk that tumor so that it wasn't even recognizable. Back to reality.  Nan has cancer and she is still in the fight of her life.  Prayers needed.  And my dear friend Laura, who only has one brother in his thirties whom she is very close to, lives in town, has three YOUNG kids (oldest is eight)...has mesothelioma.  They have no idea how he got this rare cancer from asbestos, which makes it all the more scary (who else was around it?  Laura? the parents?).  They gave him a month or two (actually his family-he and his wife didn't want to know).  They flew him to Boston to the people who specialize in this.  He was on the list for surgery.  They just did some serious bloodwork and testing and determined he is no longer a candidate.  That was the news this Wed, the day of my surgery.  He is still in Boston, half the family there, half at home in my state.  Then the email today came that he will be in heaven soon and his dad and three kids are desperately trying to make it to Boston to say goodbye.  My.heart.is.breaking for this family and their very young children.  Please take some time out of your day to pray for them and the soul of Sam.

15 comments:

prayerfuljourney said...

OMG! Sounds like your surgery went as well as it could have..thank God. I never knew that about a uterine septum. I had one that the dr fixed in my last surgery. He told me that I was born with it. Hmmm....

So sad to hear about your two friends. Gosh...I hope that young man's entire family can make it to Boston to be with him in his final moments. Sounds like everything has happened all too fast.

My friend went through breast cancer...it's scary no matter how big or small. Praying your friend can keep hers under control.

Awaiting a Child of God:) said...

Soo much going on that I can't keep up with what to comment about...haha!! To sum it up, can we just praise God for Dr. H!!! I mean, the man is brilliant!!!! So glad to hear you are back home and doing well. As far as ttc, from what I experienced after my lap, you can ttc as soon as you feel ready. Crazy as it sounds, after my laparotomy, I was ├╝ber sore still at 10 weeks post-op. I remember talking to ppvi and asking them when we could start ttc and they said as soon as I was ready. Well, I had lap thanksgiving. We skipped january cycle(bc I was still fragile) and ttc feb and march. March was month I conceived:) so get on it!!! Hahaha.

Im really glad you wrote about this experience with surgery. You were my inspiration when I first joined the blog world. Your story encouraged me and I know that this post as well as your others will encourage others as well.

Hugs!!

Angela said...

I've only read 1/3 of your post so far...have to take it in chunks b/c my kids are crazy today! ;) But it sounds like you had an AMAZING experience/surgery and the Holy Spirit was certainly with you! Praise Jesus!

Sew said...

you might want to check into an anti inflammatory diet?

I would KILL for your deductible!!!!!!!! :)

Little JoAnn said...

Wow....what an update. Thank goodness you had the lap. You are absolutely right about everything.

Inflammation go away!!!

Do you take antiboitics on the TTC cycles as well as before hand?

Both of you???

I am a big believer in them.

ALIVEINHOPE said...

I seem to have lost track of time, my friend. I am SO glad to hear that your lap went well (all things considered).

Not sure I'm following well on the whole tube thing, either. Did you have a selective hysterosalpingogram (SHSG)? (K... It's sad that I know how to spell that, isn't it?) And the catheterization of both tubes?? That is what it sounds like to me. If the dye is flowing through each tube now, then it sounds like he was finally able to get the wire to pass through them.

My lap in March proved to be an interesting one in the sense that the doctors were able to see that the tubes can become blocked again only 9 months after clearing them. :( (I guess they normally don't look until 1 1/2 yrs or so later.) Thankfully, they were able to clear them again. Ugh... I still think that infection is the culprit.

After a lap, I normally wait for any post-op bleeding/pain to stop before intimacy with my husband, but otherwise know of no set timeframe for rest. Doc usually says to wait until I feel up to it, but that's his only direction. If they left the # of weeks blank, then my guess is that he feels the same in your case. Go with how you are feeling.

Sorry I've been so distant for a while. I will try to update tomorrow. I'm afraid the battle is still raging, but God is good and all will be well.

(((Hugs)))

Simone said...

Wow lots going on. I'm glad that everything worked out with bringing the kids and the surgery. You are right getting a lap done is critical to diagnosis IF yet most non napro drs dont bother. As far as your question. I was told whenever I was comfortable, but I waited until any bleeding, swelling, discomfort was gone. I think that was about a week or two after the lap. I waited longer after my laparotomy.
As for the inflammation. That is very interesting. I've heard that antibiotics can be anti-inflammatory and I think you had success with them in the past???

allyouwhohope said...

Wow! What a trip! And fascinating results!

Love all the questions you got to talk to him about! My problem with the bloodwork was not the money but that there was literally no lab that was willing to give it to me (and obviously wouldn't send it thenselves). I was told over and over that it was against the law. PPVI wouldn't budge and therefore I was forced to find a new dr, which was frustrating at the time and caused me a lot of tears, but it also led me to a great dr that found new diagnoses. And now I'm just thankful a NaPro surgeon will be practicing in my city!

JellyBelly said...

Wow! What an update!!! Dr H is so amazing!!!!!

I hope and pray that we can have a Napro-trained surgeon up here since there is no way we will ever be able to afford another surgery in the US!

WheelbarrowRider said...

AYWH, Yes, that def can be an issue. I have three local hospitals and mine that would ship stopped (risk management laid the smackdown). Another never would. But a third will and will mail it to boot. Hopefully they don't catch on as well, lol, b/c this is working for me. I am sorry this isnt' an option for you. So frustrating! Little Joann, Yes, dh and I take antibiotics on CD 1-10 when we are ttc, then an IV upon pos preg test (10day) and one at delivery (same as if pos for group b strep). We are not intimate at all when I am pregnant, but we are after the baby is born and no abx while I am not cycling so lots of time for infection to go crazy before we attempt clean up and ttc again (I go a yr without cycles while nursing). Initially dh and I both took 21 days (after the 2 weeks of doxy failed us and we had 2 m/c conceived on TEBB cycles-we didn't know any better in 2006 and neither did dr. h). AIH, nope, it sounds like he never got the wire through. I will try to compile and get answers from the nurses when they call with my culture results.

WheelbarrowRider said...

Sew, thanks for making me appreciate this-you are right. And angela, I completely understand. I hope you make it back. Awaiting, I love to hear from you-you are always so kind to me and I loved reading your blog and catching up on how you are doing! I appreciate you all handing in there with my infrequent posting!

Hebrews 11:1 said...

I'm glad it went so well!! Hope you enjoyed your time in Omaha. I still think of it as home! :)

the misfit said...

(1) "The pelvic rest box was checked but it said f/u with doc" - I know we get used to this stuff, but woman, read that sentence again. Oh. My.

(2) Prayers for your friends. I'm so sorry to hear that.

E said...

Wow. Sounds like Dr H was quite thorough and I am so glad he is working on the inflammation for you. This infection stuff is just awful to deal with, especially being Catholic. So so so hard.

My tubes were blocked, too. I had them unblocked 3 times before conceiving our daughter.

Now we are back on the infection stuff. I am probably going to see Dr. Toth in August for more treatment.

All in His Perfect Timing said...

Wow! Hotel rooms with young boys! Lets just say you have scared me. :-) LOL
I'm so glad you had a great surgery experience and chat with Dr. H! I can't believe your tubes were both blocked!???!! CRAZY!
I'd say you TTC as soon as you feel like it! That's what we did. :-)
Praying for both of your friends.