Something worrying me

As you all know I have a surgery date of Jan 2. Something is starting to worry me. I have a neurological disease called Friedreich's Ataxia (www.frda.org) and I walk with a walker inside my home, outside my home, I have to use a wheelchair. My worry is, I know it is important to walk after surgery, however when I am tired, sick, or just plain having a bad day, walking is almost impossible for me. I am worried about getting forced to walk when I won't be able to while I am in the hospital. Having just had this surgery, I don't see me walking beyond a couple steps afterwards. Does anyone know what they might do? Someone told me once there are bed exercises they will make me do which is fine. My worry is... some nurse that doesn't think my FA is any excuse not to walk, will give me a hard time about it. Right now that is the thing that is scaring me the most. I can't imagine falling at that time.. Any tips? Kell

Hi Kelley...Congrats on the surgery date!!!!!! As for the walking may i suggest you suggest to your doctor that they put it in the Doctors Orders so ALL the nurses will know. All my nurses were wonderful...only once did they walk with me. I got up when i felt like it to walk...no one pushed me to do it altho they suggested i do when i could. Good luck to you Sally

I agree with the previous poster about the Doctors Orders, BUT the nurses are great at EMMC. They are not over bearing in the least. I found the PAs to be worse then them. BUT I will not get into that. All water under the bridge. I will say that you should really really Stress about your fears. I had told Dr Clough and everyone that I could not have terry strips, that I was allergic to them. When Dr Clough took off the big padding of gauze I was so shocked to find all the terry strips there. He said it would not be a problem, I told him about how bad it was for me the last time I had them put on me. He took them off right then, I had started to have a reaction, if they had been left on another day it would have bad. So.........the point of telling this to you is to make sure you stress that you want everyone to know. One night when I was feeling icky, one of the nurses suggested I do some excersices in bed. She showed me how to do them. It was great. They also use the compress things, that squeeze your legs to keep your circulation going. You can not get better care then at EMMC. I would go back there to have an operation that had any length of stay then go to the hospital closer to me. Try not to worry!

Hi Kelley, I have to agree with the others that have responded. Inform your surgeon so that your disease will be in your charts. The compression boots you will wear will help with the circulation. The purpose of walking is to keep your blood and oxygen moving so that you do not get clots etc, that can lead to major problems. The nurses at EMMC are fantastic, you just have to ask for assistance, they will gladly you show you the exercises that will help you, they will also help you out of bed and with your walker once you feel up to a very slow stroll. Use caution and don't over due it. As long as you do the exercises that you are shown, and perhaps later take a very short & slow stroll you will be okay, they will not harrass you about. Oh, and congratulations on your surgery date! Cindy

Hi Kelley, As previous post have said don't worry about it. They aren't going to force you. The reason leg exercises are talked about is because they are essential to your wellbeing. Blood clots can be deadly. It is a simple exercise that you should be able to do. As well as the ankle pumps you will use an incentive spirometer, use it faithfully and you will see the reason why. As far as walking goes, do what you can. You may find that you have some bad gas pains in your chest and this will help alieve that. As far as the epidural, mine didn't work for ****! I was in some nasty pain and had to have a morphine pump. The best way to get through the hospital stay is to stand your ground, tell them what you need, and go with the flow. You will feel better as each day passes post op, at least that is something to look forward to. Good luck Casey