Monday, July 20, 2009

Things your doctor may not tell you, part 2

The dietitian came in with a computer on a rolling stand to take my food order for the day. Usually they do it the day before for the next day, but since I'd been in surgery most of the prior day they did it early in the morning. I was able to specify exactly what I wanted to eat at all three meals. I found out that you need to be very specific. If you don't order salt and pepper, you don't get salt and pepper! There were plenty of vegetarian entrees. I was hungry and ate everything they served me for the rest of the day.

Occupational Therapy came in right after breakfast and talked to me about safety at home, how to move my own leg, and how to set the CPM machine.

Physical therapy came in a bit later. I told the therapist about my epidural problem, because she had a walker with her and wanted me to get out of bed. I said that I would try, but I didn't know if I could bear weight on my numb left leg. First she got me to sit up on the edge of the bed, which was more difficult than you can imagine. If my leg had not been numb, I could use it to maneuver myself around. Without it, I could only rely on my arms and her assistance to get my right leg out of the CPM, scoot to the edge of the bed, and turn myself sideways to sit on it. After all of that exertion I ended up sitting upright and was pretty proud of myself. Until ... I started getting very dizzy! My head felt full of cotton and my ears were ringing. I was pretty sure I was going to pass out and so PT made me lay back down immediately. This is extremely common for people who have lost a lot of blood. She said once I had my transfusion I should be able to sit up without passing out!

The rest of the day I spent reading a bit, napping a bit, talking with Perry, eating, and having my vitals checked every couple of hours. My surgeon and anesthesiologist came to visit and answered some questions. Most importantly my surgeon said that the operation had gone very well.

In the evening I used my earplugs and got a pretty good night's sleep. The noise of the CPM, the nurses station outside my door, and the foot booties inflating and deflating were all easy to tune out since I was exhausted. For two months before surgery I'd practiced sleeping on my back since that was not natural for me. I was able to sleep on my back without problems in the hospital and once home, so I recommend practicing beforehand.

Friday was very much like Thursday. My numb leg felt a bit stronger. PT got me up on the side of the bed again, and again I got dizzy, so we went no further. The day passed uneventfully.

Around 4 PM the nurses told me it was time for my transfusion. They were aware I had donated my own blood. I checked the label on the blood bag myself and everything was OK. I looked forward to feeling stronger after the transfusion.

The bag of blood was hooked up to my regular IV. I will say that the transfusion was painful. I have heard from one other hip chick that her transfusion was painful. Others have not mentioned it. I do not think it is painful for most people, but when it comes to giving blood or getting it back, I obviously have difficulties. The nurse said that blood is actually caustic and it could be burning my skin or veins as it entered my hand through the IV. My hand and the IV site were stinging throughout the transfusion. The nurses offered to re-do the IV but I didn't think that was the problem, and figured that messing with the IV would also hurt. I put an ice pack on my hand and watched several episodes of "What Not to Wear" to distract me. Each unit took a few hours so I knew the pain would be short-lived. It wasn't horrible, but it was pain.

I was also sensitive to the saline solution used to flush the IV. So, obviously I am sensitive to things which others may not be. Many of the nurses pushed the saline solution in really fast, which hurt more. I told them to push it very slowly, which hurt less. I am surprised that they aren't always gentle, but then I realize that I may be one of very few people who are sensitive to the saline and experience pain. At least now I know to tell them to do it carefully for less pain.

This was a very big day because they took out the epidural. A couple of hours before, they started me on oral medications (Oxycodone). Then they took out the epidural (which did not hurt, by the way, other than taking off the tape which was just annoying and still itches!). After the numbness wore off (a couple of hours), I was able to sit up on the side of the bed without dizziness and use a walker to go sit in a chair in my room. A small step for womankind, but a huge step for me.

I ate lunch sitting up in a chair while my bed was changed. I can't tell you how good it felt to move around and get out of bed, finally, even though every step I took was painful. I could not move my operated leg forward at all since it was so weak, so I had to use my toes to creep it forward, without putting any weight on it of course. Then I could move the walker forward a bit.

They took out the catheter so I could use the regular toilet (although I used a bedside commode at first so I didn't have as far to go). The catheter removal did not hurt. I got up several times with the walker and each time it got easier. I still needed help getting my leg in and out of the CPM machine.

They started me on Fragmin injections to prevent blood clots. I will have to inject myself when I get home, so I asked the nurse on duty, nurse D, to show me how to do it. She said don't worry, it goes into the fatty part of your abdomen so it doesn't hurt. Then I pulled up my shirt and it became clear that I don't have any fat on my abdomen. Well, she said, it may hurt for you. Great.

This is the only RN that I had a strong dislike for. She was mean and nasty, in my opinion. For this injection, she pinched the skin on my stomach, took the Fragmin injector, and slammed the needle into my body with quite a bit of force, which hurt. She then pushed the plunger as hard as she could, which stung. I still have a bruise from where she injected me over a week later. Throughout my stay, she was abrupt with me and would not answer any of my questions.

The next day another nurse injected me and since then I've injected myself many times. Not a single bruise has occurred, and the injections have not hurt. The kind nurse who showed me how to do it the RIGHT way the next day said to pinch the skin and shake it so the nerves are occupied and feel less pain. Then put the tip of the needle against my skin and push it in very slowly; she said there is no reason to hold the needle up high and jam it in to the skin, other than to cause pain. She also told me to push the plunger slowly so it wouldn't hurt.

Nurse D, When I have my LPAO I will specifically ask that you not be assigned to me. I strongly suggest you find another job, since obviously nursing is not your cup of tea. I won't put up with your kind of shit in the future.

In addition to nurse D who is an RN, there were two CNAs that I don't want around me either. One was just plain stupid. As in, when she talked, I wanted to correct her grammar and tell her I didn't care to listen to her babble on and on about her bad family situation. That in itself would have been tolerable, but when I asked her to help me get my leg out of the CPM machine she pulled on it HARD, which hurt. I told her she couldn't pull my leg straight out like that and she said, well, she had NEVER DONE THIS BEFORE. I couldn't believe they had assigned someone to me who was not familiar with how to move a PAO patient. That's not supposed to happen at Tacoma General. I really had to go to the bathroom so I didn't have time for her to get someone who had done it before. I instructed her exactly what I needed done to get me out of bed. She was clumsy and didn't apologize for hurting me.

Later on she grabbed my right wrist (the one with the IV) to take my pulse, and pressed down hard on the IV needle itself, and I said OUCH, she looked at me blankly. I said look, don't you see the IV there? Can't you use the other wrist to take my pulse? She looked at me blankly and said, "it shouldn't hurt for me to push on your IV." Right, well, it does honey, so get away from me. You are a moron and I won't put up with your kind of shit in the future.

Finally, there was the CNA who tried to move me the first day. I never got her name and she only came in one other time when I rang the call button. She was young and inexperienced and had an annoyed look on her face every time I saw her. I don't want her around me either in the future. I can just tell that she'll do something to me that is stupid and painful because from the expression on her face I can tell she just didn't care. I won't put up with her kind of shit in the future either.

This operation cost something like $100,000, which I narrowly avoided paying myself. My out-of-pocket costs are still going to be several thousand dollars for co-pays, etc. For that amount of money I expect the best quality of care. I may sound harsh, but I won't put up with anyone who doesn't live up to that standard.

They removed my IV line today and also the drains from the incision. Neither of these things hurt. Then they changed the dressing on the wound for the first time. I saw the scar and it looked good! Pretty big, but neat and not swollen. The stitches are under the skin, and the outside is super glued shut. There is purple permanent marker with hatch marks along the scar line, which looks worse than the scar itself. I took a picture with my phone before the dressing went back on. It is pretty fuzzy; I'll post it later alongside the two-week scar photo for comparison.

I'm now on oxycontin and oxytocin for pain managment, and I'm able to handle it pretty well. It can make me tired and last night a little nauseous, and I have a headache sometimes. But today I've been visiting with my parents who are here, and my aunt and uncle visited from Seattle. I'm coherent.

I think they are going to let me go home tomorrow, but I need to learn how to use crutches first. PT did not show up at all today. I found out later that someone called in sick and the backup person didn't get the message. I was concerned that I didn't get to try crutches because I really really really want to go home tomorrow and if that's the only thing holding me up, I will be upset if I have to stay an extra night.

They moved me in to another room since they needed mine for someone who might have seizures and my room had a monitoring camera. No problem; the new room was just exactly the same but on the other side of the building. I now had a view of a church steeple instead of a smokestack. Had it not been cloudy there was supposed to be a view of Mt. Rainier, but I never saw it.

I got to take a real shower after breakfast, sitting down of course, and it felt great.

PT did come in and show me how to use crutches. I had to climb two stairs, up and down, and crutch down the hallway and back, before they'd let me graduate from crutch school. Success!

Then it was a matter of getting my prescriptions filled (I had no money but my mother paid) and getting all of the paperwork signed. I was in a hurry to be discharged because if we hit rush hour traffic the 2.5 hour trip could expand to 4 or more hours. They got everything done quickly and I was discharged by 1:00 PM. They wheeled me down to the car and I got in without problems. The two and a half hour trip was easy, and when I got home my home hospital bed and CPM were waiting for me. There's no place like home.

Final Advice
My best advice for anyone undergoing PAO or any surgery --- get in the very best physical shape you can beforehand. Although you may have limitations on your activity before surgery, do as much as you can to strengthen your arms (for using crutches), your non-operated leg (to help support all of your weight) and your operated leg (the stronger it is to start, the easier it will be to rehabilitate). Eat well and be in the best possible health you can be. A strong, healthy body can better tolerate the massive stress of this surgery. Be a fighter, come out a winner.

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