February 05, 2005
Pre Op FVFG Tidbits
This was a revamped letter I wrote to a person that is having the FVFG also at Duke. I thought it would be good information to post for those pre op FVFG.
Star
Really, like I said...it is MY pleasure to write to you. I don't EVER want to force information on people, but if they seek it out...I like to assist and like I said, return the favor a hundred times over. :) I thank you for sharing and seeking information! Knowledge is power and I am grateful that you are doing so! Thats GREAT!
About travel...I took angel flights, I live in Colorado (so I will wave to you when you fly by). I actually went to south FL before my surgery to get ready there since my mom, brother and nephews and niece would help me there. But I did take two Angel Flights plances there and back. That is an option. Also, another guy I helped here in Colorado took a regular flight but they let the airline know it was medical and they got a break also...you may want to check into that unless its too late. I will tell you this...on the way back on the plane...YOU NEED TO PUT YOUR LEG UP TO ELEVATE IT. This is a must. If not, you will SEE your ankle and foot turn purple and feel your heart throb in your foot. This is NOT good. In fact I spent alot of the 6 weeks and there after elevating it. Funny, Now that I think of it...I do that now sometimes...guess its habit. :) Put your leg up on your gf and/or mom...you will thank me later for that!
Also I had the hospital give mne an ice pack before I left and used it on the flight. You will be pretty swollen after the surgery and for weeks to come...ice bags will and should be your best friend.
Keep in mind for future reference that Dr U uses a different scale than the norm...meaning in the future...people will say...oh, you were a stage 3? 4? That means collapse and can even show proof of this, but know yourself that Dr U uses a different scale and a 3 or 4 may not be a collapse. ;) Save you some concern and confusion in the future.
I too was on crutches to prevent collapse for 4 months while I waited on the waiting list. LUCKILY, my stage did not advance. I was lucky and hopefully yours is like that too.
Thats good insurance is paying for everything. Mine did (knock on wood)...I can see some of the items havent been paid yet from my insurance. I did have to pay $500 when I went there. I did not know this and it was because I was out of network. Check into that if you wish. I also got a letter from anethesia saying I owed $6000...I was in bed then and I can remember FREAKIN out about this...dont freak on this...it works its way out and insurance took care of it. You can be a bit sensitive in bed...from meds and what you been through.
Just as a warning...I remember thinking before hand that my hip and leg would hurt after surgery...your WHOLE body is tramatized. I mean this. You feel like you been hit by a truck. I am NOT telling this to scare you since it does pass...but try not to over estimate that you will just bounce back. That will take weeks for your body to get energy back. You will be surprised how much it drains you. Sleep while you can now...they wake you every two hours in the hospital for something....cathetar bag, take blood, drain the blood from the drainage bags, tempurature, food, drink, pulse, med bag change...stop the beeping!!!!! You will laugh at this later...and know exactly what I am talking about. :)
They get you out of the bed the NEXT DAY. This I still cannot believe. I was doing so well, the PT and I got to stand up and walk around the bed to the other side of the bed...to the bathroom and around the bed again to lay down...That probably took 30 minutes. :) Normally they just stand you up which trust me...is a challenge in itself.
Thats what I did-mini-vacation and that is SUCH a good frame of mind to be in going into this. The pool was my savior...you cant do anything but the one thing you can do after 6 wks (once the wounds are closed and doc says ok) is swim. You can WALK in the pool. Its such a nice freedom. Being in FL, I was in heaven (I grew up there). I would stay there for 3-4 hours a days (now this is EXTREME-you dont need to do this). I look back and I laugh at all the times there. I was at my moms and she lives in a retirement community so I knew all the ladys at the pool and men...etc. I go there every March and I cannot WAIT to go this March and show them all I can walk! Silly to say but I would wheel my wheelchair there and get in and etc...I am excited for that moment. Sorry, got side tracked... :)
Pain-you will have massive pain pills. Everyone is different. You may have pain and may not. I did not. I also seems to fallen into the exception to every rule through all this.Just take it easy . Get ice bags now and switch them out for your ankle mostly and your hip...ankle mostly. The swelling will go down, takes time.
What I did in bed. I lived there. :) Buy a "grabber" any pharmacy has them...walgreens eckards, Payless, I dont know what you have there (store). Once you drop the remote on the ground...you may not be able to get it. Get a grabber. This will sound ridiculous but get a apron with pockets. I know this sounds silly...BUT, after your six weeks to 6 months...you will be on crutches...as now, you know you can carry nothing! So those times where you would like to carry the empty glass to the kitchen or get your own ice bag, etc...this will be handy. This also will prevent some frustration and give you SOME freedom of caring for yourself. :)
What I did...TV, movies, books, letters, arts and crafts, my mom would bring things to me to do so I didnt feel so fricken helpless...like all the ingredients to make a salad or ingredients to make soup and cut it up and put in bowl...or wrap things for her...I had a laptop so I was online ALOT and on the group too...I would say all this happened after 4 weeks. The first several I slept and napped and a shower...thats a production...a 2 hour process from beginning to end (resting inbetween). You will feel so good after your first shower...you wont have one for a week! ;) BECAREFUL! This is a scarey area! Get soap on a rope now cuz when you drop the soap...it will take you about two times for that to happen, since you will call for someone to come in the shower and hand you the soap. ;)
The tape things...you will know later...tuck this in the back of your head...they will come off the more you take showers...dont take them off yourself! It will make the scar wider then (skin wont be snug together). Dont worry about this now...theres so much more Ill write to you for later.
The time will go sooooo slow for you. I promise, you will look back and go wow! That was a year ago! :) Take care of yourself after the surgery because it lays the groundwork for your future.
I love hearing "healing-type ambient music". This really says alot about you in which we have in common. Seems to me, you dont know what will work but you will try every modality incase it does or contributes to working. Tell me I am wrong...it says it throughout your email to me. :) - music I did this also...actually, I put head phones on the night before while going to sleep so subliminally, it was going in my head . :) So the next morning, I was good to go and healing already! ;)
Dont bother to take much to the hospital...you wont do much...and someone could stay there with you in the chair. It is not too comfy but my mom did...only one person though to sleep over. THEY will freeze and you will sweat (from meds). ;) At least thats how I had it. May not be like that but I like to have people prepare for anything.
You may go back to work after 6 weeks...depends, everyone is different...one thing I will say is KEEP YOUR LEG ELEVATED...I dont care where you are...work, home, wherever.And ice...bring ice to work...I did. I know people that went to work at 6 wks...it exhausts them alot...I would recommend working a few hours at home first if you can and doing little by little. Since things take 10 times longer in your condition after...its not like just getting up to go to work. :)
The appt before your surgery...yea, thats a mess, pack a lunch or something cuz you will be there most of the day. Its like cattle that day. ;) There is a COOL cafeteria downstairs at Duke, real cool, eat there but bring cash...they dont take credit and the atm machines charge you. :) Have mom or gf get food for you and bring it up to the cattle room. ;)
Keep in touch, dont be shy about any question. As you can see I am pretty open with information. Tell family to be patient with you. It is hard on them too. It's like having an infant again except that the infant can TALK! ;)Take it moment by moment since day by day will be toooooo long.
KNOW I will have you in my heart, sincerely Daysun, I will send you good thoughts and healing thoughts for you.Feb 17th is your day...if you are reading this, send him good thoughts also!
Posted by Star on February 5, 2005 01:34 AM