Downhill From Here

If you have been trying to keep up with this blog, I am sure have noticed that it has been quite easy since I haven't updated in weeks!! I am not sure if that is a sign of good things or bad. I did not have much to report and did not want to blog the same info repeatedly. I was re-inspired to start blogging again after I was asked to answer some questions for a new patient who was also just wanting information of the unknown. Of course I can relate to that and know the importance of information. Any information. I am definitely in a better place. I am able to look forward and even consider doing the second hip in 6 months. Last I wrote I was a little over two weeks post op. I was frustrated at being house bound and helpless. Showers were a group event and I felt unproductive and useless. A burden. Now? I have only 6 weeks left on my non-weight bearing sentence. I never thought I would get here and I did it with most of my sanity in place. Truly the key to keeping my sanity was my amazing and constant support system. My parents and husband took me anywhere I wanted...Target (of course), Costco, grocery stores, even road trips. Brought me coffee, surprises, and takeout without me asking. Anything to make me happy, which I truly appreciate. I had visitors from all over the country, some still scheduled to arrive. Looking forward to visits and trips helped me immensely. I passed the time, initially (while I wasn't blogging) with online shopping, planning parties with Pinterest, and watching really bad Reality TV. The pain factor is not an issue AT ALL. I haven't dealt with pain since day 20 post op, where I was only taking an ibuprofen at night. I have started to sleep like a normal person, without pain when I turn in bed. I am able to take a shower without any help, as long as I have my shower chair. I have built amazing triceps, biceps, and back as a result of using a walker and crutches. I might frown at the scar on my calf now and then, but hey I love wearing tank tops and sundresses. Look at me being all "glass half full." Such a difference from the first post....or even the last post.

Adapting

This is it. The inspiration for this entire blog. Granted, I am about 15 days post-op. I am healing well. I have gone to the doctor at 12 days post op to get a "walking cast.". Why in quotes? Because I cannot actually walk in the cast. If you recall, no walking until August. Sigh. I try not to recall. Now, the actual physical healing is going well. I'm able to showern now. I can sleep without the cast at night if i decide to do so. I am plugging along. I have had an outing or two, including my son's baseball games. The rest of it? You know, the asking people to help me with EVERYTHING?? The inability to vacuum, pick up scrap paper off the ground, sweep, pick up and console the children when they fall, declutter, shower, etc?!? I'm having a rough time. I am usually the person who does all the shopping, because I enjoy it. I do the menu planning, the daily schedule/ routine. I attend the mid-day school events because I want to and because I can. Now,I have to delegate -everything,including the trips to Target. If you are the Target shopper, like me, then you know the "list" is a very loose list of the necessities. I mean,you don't know you need the pink sparkly wedges on clearance until you SEE them. Now, I have to put together a list of what I need,send my mom or husband, and hope they find what I need. I can only imagine all the great deals I am missing out on. Sigh. I am proud to say I have only had 1.5 breakdowns. Both alone, because of course I don't want anyone to feel bad. I HATE inconveniencing others or asking for anything. I have these standards for how the house should run and doing things around the house that I am trying NOT to put on others. It's beyond difficult. I don't have an option. So I ask. If I send ANY hesitation, I attempt it myself,which usually just upsets and pressures the person I am asking. It's a vicious circle. I am hoping as my pain subsides and my balance gets better, I can do more and ask for less. I am hoping my control issues don't burn bridges. I am hoping the next three months speed by.

D-Day

Well, I survived. Mentally and physically...so far. The emotional part is still being tested daily.

I will dedicate this post to my actual hospital stay - 5.5 days. I was actually discharged just a day and a half ago.

The day of - I was anxious as we were running late, getting to the hospital at 6:20 am when we were due at 6 am. That's right, anxious about being late to a procedure I have been having nightmares about for at least two weeks. Go figure.

I do have to say, once we got in my "usual" anxiety settled in. You know the ones where you wonder if you are rolling away for the last time from you husband, if you just said your last good bye to the children, if they will be the kids that lost their mom at such a young age and were scarred for life. I knew they were in good hands with my Parents and MBH, but, still, they were not my hands.

Spoiler alert, it went fine. I rolled in and had a small dose of anathesia do get me through the goodbye and into the operating room. Then it all went black. Next thing I know,
I am waking up in recovery at 8:20 pm and the nurses calling my name. (TWELVE HOURS after I went in. Insanity.)My thoughts were with MBH - that he has been waiting that long for me. I can only imagine.

That night is so groggy, I barely remember anything. I notice I am in ICU, had a circulation air pump on my legs. The legs were strapped together, with a pillow of sorts in between. I had a catheter in (lucky me), and IV's started in both hands. No pain. And lo and behold, I had a PCA (layman's terms: I controlled the pain medication with the touch of a button). I had heard about this magical invention, but never seen or used it. The nurse was AMAZING. I think the nurse can make or break the first day for you. She was gentle, tried not to wake me, asked me if I wanted water regularly, let me grip my cell phone, and used a flashlight to check my vitals...a flashlight?! {Insert appreciative sigh here}.

MBH had all intentions to stay the night, but then we were told that he could not stay in the ICU room. He could stay in the waiting room down the hall, but that defeated the purpose. I urged him to go home, get some sleep, and come the next day after he was refreshed. He wasn't thrilled and had the "angry white man lips" going.[You guys know what I am talking about, right? Where angry, usually Caucasian men, purse their lips so tight, they all but disappear into a line.] Not happy.

The next few days passed with progress: removal of some of the IV's, removal of the catheter, I opted to use my PCA and pain pills as needed, and did not go crazy with power, and then I started physical therapy my second day. The nurses ALL warned me to take both pain pills and a quick "bump" off my PCA before starting my first session. Thank god I did. It was bearable even with those precautions. I made it...started to use a walker, a commode (fancy word for higher toilet seat) so I didn't have to pee in a bed pan. Though MBH wanted to stay with me every night, it just wasn't feasible with two little kids who were already having difficulty without mom around. The next best thing: my mom. She stayed every night and did everything and more my nurse would do. Dealt with my whining, bitching, complaining, while giving me sponge baths, changing my sheets and clothes daily, watching trash TV with me, getting us real coffee from down stairs, acted as the buffer between myself and my father (whose coping skills are only rivaled by those of a newborn baby with mood disorder), and never complained once.

We made it home in one piece. I had brought back a ten pound splint on my leg, a walker, wheelchair, commode, a bandage on my hip, and the faith that the next four months would "not be that bad."*

*I'll get into the trials, tribulations,and frustrations in the next posts. I wanted to end on a happy note.

Less than 24 hours...

Twelve hours to be exact...until I have to get up, get ready, prep, and silently take a 35 minute car ride to the hospital. I have been counting down, in hours, since I got up this morning. I have nothing else to focus on at this point. My recovery room (downstairs)? Decorated. My meetings at work? Done. My files for work? All turned in. The house? All cleaned (Thank you to L!). What else is there left to do? Perseverate.

It wasn't this bad until yesterday, after my pre-op at the hospital. I have successfully been able to minimize this surgery to everyone, including myself. I think I just felt like I couldn't let on how BIG this was to my kids, my husband, my parents, friends...myself. When the nurse said I would wake up in ICU after the surgery, I was in shock. "ICU?!" In my mind I associated ICU with sick and dying people who are on the edge. Not (mostly) healthy 34 year old's undergoing surgery for her hip. I mean, really people, MY HIP.

I vaguely heard her say that it was ICU because of the graft. The nurses need to be "on top of" the graft, as it is very sensitive. The room has to be a certain temperature, as does my body, and they have to check consistently how the graft is taking.

I got back in the car with MBH, who had of course driven with me there, and started to cry...and stare out the window. I am sure I was great company for the 40 minute drive back to work. He didn't know how to help me. He even asked and I stated "There's nothing you can do. I just have to get over it."

The last day has been ups and downs. One minute I am fine. The next, someone says "good luck" or "how are you  handling it" and I start tearing up. I have a lump in my throat. I utter "fine" in a broken whisper. Sigh.

Today I realize I can't say good bye to the kids. I am making MBH take them to my mom's tonight. I will say bye here, at home, so I don't make it harder on everyone else by crying in front of them. Sadly, I am still trying to protect THEM from being sad or worried. I will probably be in the fetal position by the time MBH returns from dropping them off. Or maybe I will have mastered the art of meditation in the short amount of time and be just fine. I can't drink any alcohol as of this morning, so I won't be able to cope in my preferred manner: a glass or two of wine.

My fear is just the one: anesthesia. That is synonymous with being out of control for 7-10 hours. Just not knowing what's happening to me during that lost time. The possibility of dying while I am under or some other crazy emergency. What if they have to stop for some reason and I have to go through the process all over again? I am slightly nervous about the pain, but shockingly not as much. Bizarre, I know.

I am hoping my next post is filled with how wonderful it all went and how calm I was during the process, as well as how it was so much better than I feared. The anxiety is normal, I know, but validation does not alleviate ANY of it.

Wish me luck.

Tick Tock....

T-minus 13 days. What have I been doing? Obsessing. Shocker, I know. Googling every possible search term related to the procedure: "Free Vascularized Fibular Graft." The fear of the unknown was causing mass amounts of anxiety. I had to find out something...anything.  I tried various combinations and at first, nothing. Then, I hit a few forums that discussed "Bilateral AVN" plus "core compression." I had previously read the articles, so I just skipped those. I decided to check out the forums. BAD IDEA.


First of all, it seems only the people that had horrible surgery experiences on their hips actually posted. I read everything from "I am still in pain ten years later, still can't sleep due to pain and it's been 8 weeks" to "I had the painful surgery and ended up doing Total Hip Replacement (THR) anyways." I was confused and, more than anything, scared. What if I ended up picking the wrong treatment? Honestly, I wasn't really given any other viable options, but maybe I should back out? Maybe there hasn't been enough second, third, or fourth opinions? Then after I thought about it for a few minutes, I concluded: Well it seems as though only people who had negative experiences posted. Where are the people that had good experiences and outcomes? They gotta be out there. 


So, I began to furiously email ANYONE I could think of for more factual information: My brother, my sister in law, my brother's friend who works with orthopedics (whom I met once), people from the forums that didn't have the surgery yet,  as well as the (saintly) nurse that has helped me each step of the way with pre-op procedures, questions, and paperwork. 


I fretted the rest of the day. I snapped at my parents. I had no patience with the children. I felt as though I was making the wrong decisions. I had images of painful drains, tubes, immobilization for weeks, scars, sleepless nights for weeks, and worst of all, possible feelings of regret. Finally, by the time I went to bed and wasted all day being frustrated and cranky, my nurse emailed me back. She emailed me that she CAN get me into contact with people who have had the same surgery recently. Also, there are not many resources or websites out there because it is RARE. So rare in fact that only TWO doctors in the whole United States can actually do it, mine being one of them (the other still being at Duke University). Somehow, that information, the fact that it is so rare, put me at ease. I mean, what are the odds all those unhappy patients that are still in pain on these forums had MY exact surgery? 


I went back to the forums. I needed to. I found out that the surgeries THEY referred to were not exactly what I am getting. They are getting various forms of treatment for AVN including core compressions, THR, etc. Similar, yes, but not my surgery. Whew. Thank frigging' GOD.


What did I do next? I needed info still, right? Well of course I googled my doctor's name and the EXACT surgery name. Bingo- I found the Duke Handbook. It is for young patients that are having the free vascularized fibular graft. It had everything I needed to know to alleviate my anxiety: pre-op, post-op, pain, care, day of, days after, what I can and can't do, as well as a timeline. A TIMELINE. I was able to breathe again. I was able to think about April 12 without tearing up, without feeling like it was the beginning of the end. 


I may not be looking forward to April 12, but I am not afraid of the unknown anymore.

Date, Set, ...Go!

So the date has been set. The nurse emailed me to say April 12. The doctor has confirmed.  I wasn't sure how to feel. I was happy the date was set, no guessing, trying to plan, or obsessing about THE DATE.  I was also nervous the date had been set, as now there was no putting it off.

MBH let my BIL/tenant know the he will will have to leave a few days (preferably weeks if I have a say) before hand so that I can focus on controlling one aspect of this debacle - my new room downstairs.  You know, the one that is currently inhabited apby my BIL and hisncanine from the 7th ring of hell. So I have one thing to focus on and I have been at it all weekend.  Online shopping, finding sheets, finding a paint color, looking for accessories, asking for input. I have put in my calendar the day maid is coming, the day to paint, the day to pick up sheets. I am looking ahead for my daughter's birthday party. (A surgery is not going to affect her party. I can limp around, delegate, and online shop to prepare.) Then mother's day. 

Shockingly my coping strategy is scheduling anything I can possibly schedule (with a glass of wine in hand of course.) The only thing I have not prepared for, the actual surgery.  Of course I put the date in my calendar (color coded green for 'personal'), though I have no idea what to expect. And that scares the shit out of me.

Diagnosis and Disassociation

I am still wondering how and why this happened. A week ago, I am sitting in the 4th doctor's office in the last year. A specialist at USC nonetheless. Finally, I'm going to get some answers. Hopefully the answer I want. He walks in, all European-like. He asks me why I am there and how can I help you. Obviously he has not thought to even glance at my chart. "How old are you?" Wow. You don't even know? I notice he hasn't referenced my name yet either. I answer, but then I am almost annoyed he is shocked at my age, diagnosis, and the range of motion in my hips. After a quick assessment, five to ten minutes, he says "Revascularization."

I have obsessively (and compulsively) had researched enough in the last three months to know EXACTLY what this entails. Maybe I am numb? I knew that this might have been an option for treatment, but the first option? I irrationally hoped for "let's get you on crutches and re evaluate in 2 months." I know..pathetic. I look at My Better Half (aka My MBH) and wonder aloud why I am not hysterical or sad. I am ...Okay, which seems odd. The doctor gives us the option of watching a video of the procedure. His video. MBH thinks its a good idea since we drove all the way out. He's usually tries to get the most out of everything, so I am not surprised.

Two minutes into the video, where they show the MARKER where the incisions will be, I lose it. I start to shake, I can't watch, I avert my eyes,I disassociate, ...I cry. I peek at MBH who is staring at the video, concentrating like he is about to take the medical boards the next day. He also added his own soundtrack, "Gnarly! Wow! Fuck!" I walked out before it was over. I made a beeline to the exit when the doctor stops us. Now he is chatty? "Do you like the video?" Uh, no. Did I find it informative? Sure.

MBH said I ran away from the doctor while he was still talking to me, offering to do this surgery in 3-4 weeks! I threw out every excuse I had: I need to talk to my referring doctor, I need to talk to work, .....I need to leave on a mission trip and spread the word of Jesus Christ. MBH later told me that it looked like I was trying to show the doctor how great my hip was feeling by basically running down the hallway.

It took me four days to get past the denial and to realize I don't have a choice, to talk about it, to think about it, to be able to help others cope, and to start this blog to chronicle my journey (assuming one day I will want to look back at the hell I went through).

The silver lining: if it works, I'm good.Forever. I also get to redo the back room - my new bedroom during my recuperation. I get to catch up on all the crappy TV shows and movies I don't have usually have time for. The cons: ...Let's not focus on that now.

I am still waiting for a final date...April..sometime. Not sure which date I prefer. I have come to the realization I am NOT in control.