Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley

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Hey BD any update? Hope things are going well. God bless you bro!

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Hey everyone,

Sorry for not updating for the past week.  I had a very troubling LL journey so far, and it's been difficult for me to find the motivation to write an update.  Let me jump straight into it.

I had a successful surgery last Thursday, May 29th.  I remember the epidural feeling abnormally painful when being inserted, and I feel convinced that my herniated discs and this could have contributed to the massive problems I ended up having (but none of the doctors will confirm this of course).

On day 2, my caregiver was with me when she noticed my O2 (oxygen) stats started dropping.  First they went down to 91.  Then, they went down to 74.  This happened in a matter of minutes and floor staff quickly rushed into the room and threw a large oxygen mask over my face (50% concentration).  I was rushed down stairs to the CT scan to view my lungs and see why I wasn't breathing.

In the CT scan room, they had to transfer me to a different bed.  The pain, only the day after surgery and my legs were incredibly sore and sensitive, of being transferred to the bed was excruciating.  I screamed and cried out as I was lifted with my legs in the air and dropped onto the other bed.  I was then given an IV into my right arm that would feed Iodine into my system and I was pushed into CT scanner.  I was also given an injection of Benadryll because I have slight sheLL Forumish allergies and apparently their Iodine was sourced by sheLL Forumish.

In the CT scanner, I felt pressure build up and my IV exploded in my arm, blood splattering all over the place.  I screamed out again, and told them what happened.  They said not to worry and finished up the scan.  They pulled me out, muttering that the key was not properly turned when inserting my IV, so human error caused my IV to explode my blood all over my arm, sheets, robe, and bruised my right underarm beyond recognition.

I was transported then to a recovery room where I was heavily monitored by nurses and doctors for 5 hours straight.  The room was too bright, too loud and I couldn't manage any sleep.  I found out here that I had pneumonia, and my right lung was heavily clouded in the CT scan.

At this point, I was grateful to even be alive and I never freaked out.  It didn't once occur to me to tell my family.  I was given treatment plans by doctors and possible causes of my pneumonia.  They immediately ruled out fat embolism and said it was likely aspirations (Dr. Paley emailed me himself to tell me how worried he was and all the options were discussed, but fat embolism was ruled out with their tests).  Finally, I was moved to the ICU lower level.  Keep in mind, this is not the original floor I was placed on.  The floor and rooms for Paley patients, the one I paid for, is a beautifully quiet floor, very large rooms, private, and trained nurses in Orthopedic patients.  I was moved to the ICU, an extremely loud, busy, ugly floor, with tiny rooms and nurses not at all familiar with Paley patients.  There were nurses there for decades who told me I was their first Paley patient.

My stay on this floor was for a long time.  Too many bad things happened for me to care to recount.  One good thing that stands out to me was when Servando told me I would have to pay for my extended stay in the hospital.  This worried me of course, because he didn't know how much it would be and I had no idea how long I would have to stay in this s**t-hole.  I emailed Dr. Paley and expressed that I was worried about the costs.  Dr. Paley immediately emailed me back and told me not to worry about the costs, he would take care of them, and all he wanted was for me to recover.  He gave me a private meeting in my room a few days later, also confirming this while checking up on me.  Then the news was confirmed- I had gotten a fatty emboli in my lungs.  For those unaware, this is when your fat being reamed out of your femoral canals goes into your bloodstream which then travels up to your lungs.

Dr. Paley in this private meeting also confirms to me that I'm only his 2nd patient ever to have a severe case of fat embolism in the past 3 years, and that I'm the worst case he's ever had of it.  What an honor, huh?  We talk for a few more minutes and he leaves.  There's not much left to say in this meeting because my condition is improving and he's already done his job, the rest was up to me to heal.

I've been on breathing oxygen tubes until today, and I'm finally breathing on my own now.  I just finished my IV antibiotics for my lungs today, and will now switch to oral antibiotics.  I still am doing a breathing treatment, where I inhale medicated smoke for up to 7 minutes, about 5-7 times a day.  To do these treatments, I'm woken up for them and have to breathe in and out of the device.  This means I've never had a consistent nightly sleep in my past week here. 

My lengthening started day 3 and I'm currently at 5 mm now.  My physical therapy didn't start until day 5 because of my troubled breathing.  I'm behind in PT as a result, but I'm getting better.  Today I finally managed to use my walker all the way to the toilet and back to my bed, on day 8.  This may sound like nothing, but I didn't leave my bed until 4 days after surgery and this is a huge success for me personally.  (On day 7, taking my first (extremely large) s**t in a bedpan was one of the worst feelings of my life.. getting cleaned up afterwards by another person wasn't pleasant either). 

I also couldn't eat anything until day 5.  I would become nauseous and nothing was appetizing.  I acquired a ravenous appetite by day 6 and had my food portions doubled by talking to the dietitian.  She ordered larger meals for me plus 3x a day of Boost, a delicious chocolate drink, 360 calories each and tons of protein.  She wants me eating a lot more protein plus getting a lot of leafy greens for my recovery.

Things are on the upswing now and looking better.  I can't say I'm not bitter about the experience I've had, but it's in the past and it could have been worse.  I'm by no means bitter about the treatment and reception I've received from the hospital.  I had extremely watchful and good care on the ICU, and the nurses there were lovely.  I've built relationships with some of them that I intend on keeping outside of the hospital.  My caregiver was excellent and visited me on days she wasn't working for me (just to check on my health).  She bought food for me, trying to spur my appetite.  She cared for me like a mother would and affectionately, the mother I needed but didn't otherwise have with me.  The treatment was on point and my immune system was strong which is why I healed much quicker than people with pneumonia usually do.

I have no idea how I managed to keep the pneumonia and my very ill state away from my family (who have been talking to me daily) and from my work partners.   But I did, and it looks like tomorrow I will be discharged.  I'm worried about the discharge because I cannot transfer as well I would have liked to, but getting out of this hospital is my #1 priority.  I had the sunlight touch my face for the first time in 7 days today.  It was a beautiful feeling.

If you were to takeaway one thing from my post, it should be this: bad things can always go wrong with this surgery.  With Western doctors, the most experienced doctors, with excellent physical shape, great health, being young, paying lots of money.  It can always go wrong.  Prepare yourself for this, and always have someone with you in the beginning of your LL.


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I will resume daily updates when I return to the Homewood Suites.  Signing out.

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Sounds like you had a pretty scary week.

Good to hear that you will be discharged soon.  Good luck BD!!

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Pretty close call. Glad you're out of it.

Imagine if this happened to a lower rate hospital outside U.S.

Fat embolism is pretty rare. I wonder if you have any suspicion what are the risks for its development. Did they give you any anticoagulant (as infusion)? Did they repeat your CT scan? Are they gonna repeat it?

I could only imagine how mixed feelings you had when you were very sick and still didn't tell anything about it to your folks.

Hopefully, all positive recovery from hereon.

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Hey BD,

I am really sorry to hear about what happened and what you've been through. I hope it will be the last complication on your journey and the rest with be smooth like butter. Be strong and stay positive and keep us all updated...

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Wow, what a start to your lengthening. The whole incident highlights the very real risks of CLL. I'm glad you had a responsible team looking after you and that Dr Paley was compassionate enough to cover your hospital costs when you had to be moved. Here's hoping that the rest of your lengthening is much more free of complications from this point.

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Scary beginning to your LL journey and an important reminder to potential LLers that things can and do go wrong, even when you pay a lot of money and go to a world-renown surgeon like Paley.

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Hope everything's alright bro.

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Hey Big D,

It seems like everything is stabilized from your note. It's a good thing that you're in great hands with Dr. Paley, he's probably the best we got. Good luck, and keep us updated with your condition. I'm sure you're distracting seamlessly already!

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Thank you everyone for the well wishes!

Day 11

I arrived back at the hotel 2 days ago, and I'm making much better progress now.  I am walking as much on the walker as needed, going to the bathroom, grabbing drinks, heating up leftovers in my microwave.  Something I love is noticing that I could do something today that I couldn't do the day before.  It could be tiny but it will really help you see progress as time passes.  I've lengthened 7 mm so far, and my only concern right now is how behind in PT I am.  I should have started PT at Paley's Institute last Monday but instead I'm starting tomorrow (due to the complications I had).

My caretaker is with me for about 4 hours a day, and she's extremely helpful to have around.  From cooking food, passing me things when I'm in my bed, carrying objects (which is pretty much impossible when using a walker), arranging my things when I don't feel like standing.  Doing this surgery is a no without having someone with you for the first 11 days at least from my experience.  I'm sure I'll need someone until day 30.

Getting off and on the bed is a task, which I'll try my best to explain.  My legs are practically useless, and I cannot lift them in the air.  So to get off the bed, I have to slowly edge my feet to the side of the bed, where I'll then push my legs off and slowly lower them until my feet make contact with the floor.  I have poor ROM, and cannot bend my legs as much as I'd like, so I have to keep my legs bent about 70 degrees when hanging them off the bed.  Then I'll push off from the bed, my left hand on the bed and right hand on the walker until I'm standing.  Standing is easy for me because of my arm strength and light weight (I'm 10 lbs. under PRECICE weight bearing limitations).  To sit back down on the bed, from my walker, I slowly lower my rear onto the bed, left hand on the bed and right hand on the walker again.  Sitting down is difficult because I have to be mindful that my knees are at least 70 degrees with the floor. Here's an image that best shows knee ROM:



When my rear is on the bed, I straighten my legs out in front of me and use my arms to pull my entire body on the bed, and keep readjusting position with my arms.  My legs are useless, so there's no lifting them to adjust their position.  I have to "crawl" my feet to adjust the position of my legs.

I do have pain.  I have stretching pain when my legs are being lengthened, probably a 3 or 4, and I'm taking my pain meds every 4 hours to keep it in check.  I'm on oxycodone 10 mg.  Last night, I had excruciating pain from trying to sleep on my sides (wanted to see if it could be done!)  Had to take a pain killer after that.  I also noticed my hips are extremely swollen and protrusive, like I grew large hips from this surgery.  My PT and doctor's appt is tomorrow, so I'll try finding out if there's anything abnormal with this. 

As far as other life things, I've been working since the day after surgery from my laptop.  Work is good, but I did have to make a few phone calls a few days after surgery, when I was still on breathing tubes and my voice was shot, which was very difficult (especially while I was trying to hide this from my business partners.  My care giver monitored the EKGs hooked up to me during my calls to make sure they didn't start beeping).  And also, my family knows!!  A few days after I had pneumonia, I called my younger sister and let her know what was going on with me.  I knew she would be the most understanding in my family and she was very supportive, calling me everyday to check up on me.  Last night, my sister and I decided to tell my parents first (after my family was begging for me to fly out for a trip).  My mom started crying and I calmed her down, letting her know that I was OK my entire stay here (of course I didn't tell her about the pneumonia).  My parents are actually very supportive now and my dad is asking when he can do his surgery (he's 65, ha!)  My mother and sister are coming out this Thursday and are already well informed on what to expect (my walker, lack of mobility) so there's no surprises there.  I'm very happy how it went over, but I still have 2 more siblings to tell that won't take this news nearly as well.  Oh well, I'm satisfied with what I've got.

See ya after PT tomorrow!