preparing your house for surgery

[quilter]

Start preparing your house 2-4 weeks before surgery. These suggestions are based on Dr. Hibner's guidelines for my last 2 surgeries, and things I figured out at home. Even if you will have 24/7 help, after surgery it's good to do things for yourself when you can and not bug your helper every few minutes. This also keeps you walking in small increments, which is important.

General
1) Buy a good quality grabber tool (Harbor Freight, any drugstore carrying medical supplies, hardware stores). As a short woman married to a tall man who isn't home during the day, I've used this often since my first PN surgery and wondered how I survived so many years without it. Also, postop it seems that because you're not at 100% energy and can't bend over normally, the first few weeks I always drop things much more than usual.
2) Buy a sock pull-on device (mine is Sock Aid Pull-On by DuroMed Industries). I can even put on knee-high nylons/thin trouser socks without tearing them. Use it lying down or standing up. Buy online or at a pharmacy that sells medical supplies.
3) Even though it still isn't on Dr. Hibner's list, before the 2007 PN surgery my pelvic PT insisted that I use a commode over the toilet immediately after discharge and for the first few weeks. (You could also use a simple walker without a seat, turned backward). You don't need the bowl & lid sections, but raise the handles to about waist height for arm support. Otherwise, you have to tighten the leg and pelvic muscles more than normal to pee/poop standing up. It also prevents you from squatting too far, which strains the incision & repaired nerve area. You can rent one at a medical supply, but the ones I've bought at Goodwill/Salvation Army for a few dollars have always been clean. I cleaned them again and they worked fine. The commode went in the car to Phoenix for use in the hotel, then rest stop/gas station bathrooms on the way home. Who cares if you walk into a bathroom with one? It's medically necessary and you'll never see those strangers again.
4) Buy 1 or 2 microbead pillows for postop. I have many PN cushions of all shapes, but after surgery this was the most comfortable and easily adjustable for the couch, bed or car. Foam or gel cushions don’t adjust to your butt and the angles you’re reclining after surgery. It takes much shifting around to keep pressure off that incision. Microbead pillows come in many shapes and sizes. A retired nurse friend of my relatives came by the first week to check on an incision concern (I was no longer in Arizona or CA). She actually knew something about PN (had worked urology and Ob/Gyn) and knew PN was horrible, but had never met anybody with it and had lots of questions. She asked about cushions and if I knew about microbead pillows. I didn’t, but Mom pulled one out of the closet and apologized for not remembering it. I used it for the rest of my stay and in the car back to CA.
5) Determine preop if your surgeon or your regular doctor will be filling your postop pain medications. Usually the surgeon prescribes for at least 4 weeks. If you see a pain mgmt. physician, make sure they know the surgeon is prescribing so you're not violating your narcotic agreement with that office. Schedule a follow-up to see your regular prescriber well before you run out of their pain medication.
6) Preop, take care of any other medication scripts that require you to see a doctor for refills. Going to an otherwise unnecessary appointment in those initial weeks postop is a pain in the butt, especially since you're supposed to limit sitting. If you'll be staying a few weeks in the city where you're having surgery, be sure your regular pharmacy knows that refills may be obtained in that city postop. If your doctors & insurance will allow it, get early refills and take as many medications with you as possible.
7) Upon discharge from the hospital, be sure to put 2 pillows from the room in the wheelchair so you can lean comfortably on the unoperated side while riding out to the car. Those wheelchair seats are hard, and the nurse/orderly will hit every possible bump.
8) Once out of the hospital, even if you’re not out of bed/off the couch much, keep things like medication, food, books, etc. in another room. This forces you to get up periodically and walk, which is good for circulation and the PN. The first 3 weeks after discharge I stayed in a single-level 3200 sq. ft U-shaped house in New Mexico. My bedroom was at the top corner of one leg of the U, the living room in the middle, the kitchen further away, and the TV room and garage at the opposite corner. I’d packed a pedometer to track walking postop. I walked many steps daily going back and forth for things I needed from my luggage or to get to the room I wanted to be in, plus specific 1/4 and 1/2 mile walks within the house (outside was 38 degrees and sloped).
9) If flying for surgery:
a) Never put any medication (or anything valuable/essential) in checked baggage - a major hassle if it’s stolen, especially pain meds. You don’t have time to file and try to replace drugs away from home, especially if it’s a weekend. All drugs/valuables go in my carry-on, which never leaves my sight on the plane.
b) My surgeon provided a travel letter for the flight crew requesting that I be allowed to stand when conditions allowed due to severe pain. There was also a section for TSA stating that I would be flying with 2 sealed bottles of Clear Ensure (liquid diet for surgery the next day), and would have larger-than-allowed (by TSA rules) quantities of compounded lidocaine ointment and suppositories on board since I would not be returning home for several weeks. Be sure you have the original prescription containers with you. Also, in case a cop stops me I always keep all prescription receipts in my wallet since I carry 2-3 suppositories (unlabeled), a small tube of lidocaine, and 1 day's worth of pain meds (not in the bottles) in my purse.
c) The letter also stated that I would be carrying air-activated ThermaCare heat patches and a small air-activated ice pack, but they would not be opened until needed in flight. The ThermaCare menstrual patches help give heat in the crotch and/or on the butt for a few hours. I cut them in half (between the heat discs) and stick them to my underwear. It's the only way you can fly with heat that I know of. You can carry an old-fashioned ice bag and get ice from the flight attendant, but they're bulky and gradually soak through, so I prefer air-activated.
d) Because I carry lidocaine, suppositories, heat/ice, and a TENS or interferential stim on board, I go to the special screening line at the airport. Even with the above letter, TSA in San Jose CA gave me a choice between a full pat-down or opening & testing both bottles of Ensure despite the manufacturer's plastic seal (the bottles were white, not clear, so they couldn't see the contents. After testing both bottles, the TSA agent suggested I empty one of my Ziploc bags, put the bottles in and and fill it with ice from a food vendor as Ensure spoils within 2 hours after opening. An extra hassle, but better than a pat-down. Clear Peach Ensure isn't bad with Sprite/7-Up added (the berry and mixed fruit flavors are not allowed due to red dye).
10) A small thing, but get your hair cut and/or colored right before surgery; you won't be able to sit in the chair to do that for many weeks. You feel better when your hair looks good and is easy to style.

Bathroom (hospital and home)
1) This is something I'm going to tell Drs. Hibner and Sparlin, but it’s probably true for most hospitals because nurses have so many patients with different restrictions to care for. Their patients are kept in the same area and the nurses know how to handle those on ketamine, but none of the nurses knew about the sitting/bending restrictions for Dr. Hibner’s PN patients. Be sure that you don't sit to use the toilet. 2-3 nurses told me to sit because I was unsteady due to ketamine, but even flying high I remembered no sitting and refused. I asked and was told they didn’t have raised toilet seats (I can’t understand that, especially for other patients who have difficulty standing or rising from a sitting position even at home).
2) Use the handrail and your IV pole for balance, and do not squat/bend more than a little. Move your gown out of the way (tuck it in your On-Q pump belt if you have one) and use the toilet standing.
3) The hospital won't release you if you can't pee (St. Joseph's was less concerned about me having a BM).
Ladies, if you can't void with your backside to the wall like normal, use this trick a male PT told me before a 2001 laparoscopy with bladder cystoscopy: Turn around and face the toilet like a guy, but straddle it so you're over the bowl. This requires you to use the pelvic muscles differently and makes it easier to void. For that 2001 surgery I was ready for discharge a few hours after they removed the catheter. I tried for over an hour to pee normally but couldn't due to morphine and the cystoscopy. They were going to make me catheterize at home, then I finally remembered his turn-around tip and it worked great. For the Dec. 2013 surgery, because of the ketamine and PN decompression I had difficulty peeing the first day in the hospital. As soon as I turned around, rested my arms on the towel shelf above the toilet, relaxed and squatted a tiny bit peeing was easy. Some of the nurses tried to stop me from turning around (thought I was confused due to ketamine), but they all got used to my strange position over the next 5-1/2 days. A few days after I was discharged, when the ketamine was decreasing, I was able to stand facing forward again and use the commode handles for support.
4) At home use a commode or walker until allowed to sit on the toilet.
5) Arrange things in the bathroom and shower at allowed heights. Where I stayed, with the commode in place the TP holder was in an awkward spot which required twisting & bending. I had my own bathroom and kept the TP roll on the towel bar on the bathroom door so it was right in front of me.

Hospital room
1) Follow your surgeon’s postop sitting/bending/squatting restrictions and show them to the nurses. In addition to the toilet issue, several nurses wanted me to sit upright on the bed for periods of time or bend over to get my slippers off the floor (no grabber at the hospital). Ask the staff to get what you need when family isn’t there and you can‘t easily get up without disconnecting a bunch of stuff.
2) Be sure the nurses re-connect the leg circulation cuffs once you get back in bed and will be inactive for a few hours; they‘re required to monitor this. I had that issue late one night: she disconnected it for the bathroom but didn‘t reconnect it. Stoned on ketamine, 2 hours later I realized her mistake and called somebody in so I could sleep and not worry about DVT (a relative died from leg DVT which moved to a lung).
3) Remember that the hospital is not a hotel or restaurant. Even when you order specific things and tell the dietician to not give you certain foods, they still don’t get it right. I was frustrated daily with St. Joseph’s, and over 5-1/2 days told 3 different kitchen supervisors not to give me bacon, sausage, salsa/spicy sauces, or caffeine. It was a losing battle. Once I was settled in my room after surgery my family bought nonfat Greek yogurt (hospital only has the regular high-sugar stuff. The nurses labeled mine and put it in a fridge along with my soy milk - the hospital doesn’t have that either and I’m lactose-intolerant). Also bought Ovaltine (I don’t drink caffeine), high-protein/high-fiber granola bars, and unsalted nuts. The non-chilled stuff stayed in my room and the nurses handed it to me if family wasn’t there and I wasn't getting up. The nurses provided me with an ongoing stash of graham crackers & peanut butter to keep in my room. When the kitchen screwed up my entree with foods I’d requested be omitted (or I woke up to a plate that had been sitting 2-4 hours and couldn’t face a heavy meal at 10 pm), I took what I wanted off the tray and ate the food my family brought.

Bedroom
1) If you have heavy low dresser drawers or totes/low drawers of clothes under the bed/in the closet, the grabber is useless unless somebody opens them for you. I suggest that once a week you have your helper access those containers, pull out the clothes you'll likely wear, and stack them somewhere you can reach without help.
2) If you choose to stand to pull on pants rather than lie on the bed, hold the waistband with your hand or the grabber and put the operated leg in first, then the other leg. If anything falls to the floor, use the grabber.
3) You can safely pull clothes out of the hamper with the grabber, and do laundry by using the grabber to pull clothes out of the washer and dryer.
4) Somebody else can change the linens until you are allowed to bend/lift mattresses.

Kitchen
1) At home, once you feel better you'll want/need to be able to prepare food. Because of restrictions in bending/lifting/squatting/reaching overhead the first few weeks, move the items you won't be able to access to an allowed height. A grabber will help with lightweight above-shoulder or below-waist items, but not with things too heavy or large to grab.
2) Consider all those daily needs below the counter or at floor level like dish detergent, cleaning supplies, pots/pans, appliances weighing more than 10 lb (Dr. Hibner gives a 10-lb lifting/carrying restriction the first few weeks). I'm a baker, but in my small kitchen heavy canisters of ingredients are on a low shelf because there's nowhere else.
3) If you have a refrigerator with a bottom freezer or an additional chest or upright freezer, move things you use regularly to higher shelves or the door. Use the grabber when possible. You can carefully lean forward with the operated leg behind you as long as you don't bend forward more than 100 degrees.
4) Even though produce drawers are usually down at the bottom of the fridge, move the contents to higher shelves.
5) Stock your cabinets & freezer with easy-to-prepare meals and ingredients. Once your incision allows you to drive short distances, you can safely grocery shop provided someone helps you reach low shelves in the store, bags groceries in lightweight quantities, and you carefully unload them at home (no matter how many trips from the car it takes).

Let me know if I forgot something.

[stephanies]

Thank you for posting this Quilter.

[nyt]

Quilter,

Thank you for this nice post. Very helpful for those who are looking for advice with upcoming surgery.

If you can have someone with you at St. Joseph's hospital I really recommend it. The nursing staff is pretty hit and miss with who is good. I had a couple of good nurses and a couple of not so good nurses. The first time I had surgery I had an epidural and the night nurse wanted me to get up and walk. I told her "I have an epidural." She said, "Yes, I know." I said, "If you know I have an epidural you know I can't stand up and walk." I knew then she was a brand new grand and was clueless. It's also been my experience at the hospital you have to ask for help to get cleaned up and for them to bring you everything to do it. It is the only hospital I've ever stayed in and all the years I worked at a hospital that something like this had to be asked for. It has always been my experience that the nurses and the aides first thing in the morning go through and get everyone cleaned up but not at St. Joseph's. I received a survey about my hospital stay the first and second time I was there and made the complaint about lack of assistance with bedside washing. The second time I got a telephone call asking me about the problem, explained in detail my experience. The individual I spoke with was very surprised and quite concerned about this and said she would make sure that it was taken care of. However, no change when I was on the same floor on my third and fourth hospital stay.

[Karyn]

Outstanding job, Quilter!
Thanks so much for the time, hard work and pain you put into this compilation!
Kind regards,
Karyn

[quilter]

Dear nyt;

My favorite nurse told me who to write a complaint to, just haven't gotten around to that yet. I'd forgotten about the lack of help with washing until you mentioned it. You just have to live with nasty hair until discharge because you can't wash it - that drove me nuts. That nurse cleaned me up the second day, but then was off for 3 days and no other nurse offered; I was too stoned on ketamine to think of it. When she returned at breakfast on my last day (ketamine to be stopped at 3 p.m.) she was shocked at my appearance. 1) I was dirty (gown hadn't been changed since she left) plus significant weight loss she could see in my face - learned after discharge that I'd lost 18 lb between sleeping a lot from ketamine and the food issues). 2) I'd been waiting 2 days for a doctor who'd said they'd prescribe Mucinex for my sinuses to do so. I kept telling the staff, but didn't recall which doctor it was so nobody did anything except promise to check on it. 3) After that nurse left for her time off I developed a bad cough from my sinuses draining that I'd been asking for help with for 2 days (another nurse said she'd get cough drops and never did). Two other nurses kept asking why I was coughing but did nothing about it. 4) the last breakfast tray was my ultimate frustration with the kitchen and I was upset. They brought yet another burrito with sausage on the side and so finely minced inside I couldn't begin to pick it out. I was beyond angry since I'd been ordering meals 1-2 days in advance. Each time they said they understood the few things I couldn't eat and typed them in the computer. The nurse offered to get me a new burrito without sausage, but I said no and ate Greek yogurt, nuts and the muffin from the tray. While I ate she immediately stayed on the phone until she got a doctor to prescribe Mucinex STAT, got several cough drops, washed me before family came, and quickly calmed me down so I could sleep & take advantage of the last 6 hours of ketamine. I was so upset that getting me to sleep so fast took a miracle on her part.

She was absolutely the best, had a soothing voice and manner (definitely experienced with ketamine patients), discussed my meditation music choices and asked to listen to several she didn't know, and held my hand, softly talking to me during the short emotional phase that every patient gets after the dose increases. When we got to the car and I tried to give her back the 2 pillows I'd stuffed in the wheelchair for the ride out, she said "keep them for your trip - it's the least they owe you for the horrible care; sorry I wasn't here those 3 days to make things better for you." I did have family there daily, but they could only come for a few hours late morning until mid-afternoon, and some of that time I was sleeping. They were advocates when needed, but not always there when something came up.

When Dr. Hibner commented on my weight loss at follow-up, I told him about my battles with the kitchen. He said the doctor's cafeteria at St. Joseph's is legendary for being just as bad. I definitely needed that weight loss (plus another 20 lb), so it's fine and I got a head start in the hospital. Plus, feeling better from surgery and walking more with less pain has helped. My BP is now much lower (medication has been reduced) and my GERD is much better.

[calluna]

One tiny thing that might perhaps help someone - the thing about hairwashing - I have heard that these shampoo caps work really well. There are several different sorts available. I had them recommended to me by someone on another forum - did not need to use them myself, but passed the idea on to a friend who was having neck surgery and was not allowed to have a shower or bath for two weeks. She said that they worked perfectly and they 'saved her sanity'.

So very sorry to hear about your difficulties whilst on ketamine - I had a bit of that myself whilst post-op. It is so awful being upset whilst on that particular drug. I got it into my head at one point that it was a sensible thing to do to get out of bed and start to get dressed in order to go home, I did not get very far of course.... planet ketamine is a strange place.

Anyway - shampoo caps!

[Amanda]

Fantastic job Quilter, from another person who has had Ketamine, it certainly does play with your head and brains!
This is a brilliant piece of essential information prior to surgery. Many thanks for your efforts Im sure they will be very helpful to anyone considering surgery with Dr Hibner.

[Emily B]

Quilter,

Thank you so much for posting all of this helpful information.

Did you mostly sleep while on the ketamine? Were you able to read or was your brain totally out of it? I'm also wondering if the ketamine caused you to not remember much.

Emily B.