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    How to handle operation

    My doctors claim I should remove a kidney due to a small mass. Not saying I believe them.

    Suppose I did this? How to prepare?

    My first concern is convalescence. I can barely hold things together now. I do not think I could manage post surgery. Also my bowel program barely works now, requires 3 hours in toilet and all my energy. I think it would fail utterly post surgery, leading to colostomy.

    The second concern is that when I even think about going into surgery for an operation I feel almost like I am having a a panic attack. I have had a lot of bad experiences in hospitals. I think I’d lose my nerve and cancel.

    Any advice for trying to prepare for an operation and its convalescence?
    Last edited by xsfxsf; 9 Aug 2019, 4:18 PM. Reason: clarify question and focus, rewrote

    #2
    You have a couple choices; bend over and kiss your ass goodbye or get the operation. A colostomy is not the worst thing that can happen. I used to feel the same way but once it got to the point of having one or kissing my ass goodbye, I had it done. Best thing I ever did for my later years in life. No more hours of sitting on the pot. Instead, I had to find a new hobby to fill up the hours I spent in the bathroom before.

    I have a feeling you're stronger than you think you are. For myself, I couldn't bear the thought of having a mass on my kidney that docs feel would spread. It'd either get it out of me or keep me comfortable til I pass.

    Comment


      #3
      Patrick I edited the post to make it sound less dire.

      Main question is how to prepare for surgery.

      Ideally for example I would like private, quiet, clean rooms in the hospital and rehab, enough skilled nursing help in the hospital for transfers without hugely long waits, and lots of attendant help at home the first few days. And some plan for bowel management. Neither seem probable.

      Last time I was in rehab in this place they refused to put me in a room where the TV was not blaring 24/7. They felt my need for sleep was outweighed by the need of my roommate, a dementia patient, to listen to the TV all day and night. And they bungled transfers, nearly fell.

      The hospital did not even have padded toilet seats or commodes either. Well they had them but could not find them. My point is I doubt they would accommodate me.
      Last edited by xsfxsf; 9 Aug 2019, 4:41 PM.

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        #4
        xsfxsf,
        My urologist found a small mass on my right kidney back in 2017. He was able to remove the mass and spare my kidney. The recovery was relatively easy, but I already had a colostomy. I was back to normal activities in 6 weeks and cancer free 2 years and counting!

        Comment


          #5
          A private room is most likely not going to happen unless you are either lucky or pay the difference between what your insurance company would pay for a semiprivate and hospital rate for a private room. It could be 1000 per day. A few times I had one it was like a gift from God. One time I was in what they call and "ER overflow" unit which was only supposed to be for 24 hours and it turned out to be several days. The room had three people, one of which was an extremely disturbing patient and after 2-3 days of this I went mad and said give me a private room, I don't care what the difference was. I paid the difference, knowing it was only going to be for a day or two and they put me in a VIP floor. It was incredible in terms of quiet, staffing level and food quality. It was restaurant quality food that can be ordered any time of day from a good-sized menu. This is how those with money get their care.

          Depending upon how long your hospitalization will be and your financial situation, if you can afford the price differential and speak to the admissions people ahead of time and let them know so they can reserve a private room for you, knowing they have the financial commitment.

          Studies have shown that private rooms, even if small ones, result in a host of better outcomes, ranging from less cross-contamination from other patients and staff to better sleep and healing. I guess even a semiprivate is better than being in a Third World country where one must lie in a fly infested open air ward with a dozen other patients.

          I always had my home aide do my bowel care in the hospital. Hospital staff, even rehab staff, don't know the slightest thing about our bowel care. To them it's pop in the suppository and ring the call bell when you're done. You have to tell them, "no, no, no, it involves a lot more than that". I always did my bowel care when in the hospital in bed. If you're going to be there a long time then you may want to bring your commode chair, though I don't think most of us do that.

          Comment


            #6
            Sounds like you're in some kind of third world country! I have Medicare and my experiences have been much different.

            PS: I got a colostomy 7 years ago. What an improvement in life, especially in a hospital!
            69yo male T12 complete since 1995
            NW NJ

            Comment


              #7
              I live in the Third World of NJ
              my hospital stays ; brought my own bed mattress and shower/toilet chair.
              and now the Democrats took the state; I'm readying for even worse.

              Comment


                #8
                Originally posted by Tim C. View Post
                I live in the Third World of NJ
                my hospital stays ; brought my own bed mattress and shower/toilet chair.
                and now the Democrats took the state; I'm readying for even worse.
                Imagine that and I live in New Jersey too!
                funny dat
                Every time in both hospitals I’ve had a Clinitron bed
                69yo male T12 complete since 1995
                NW NJ

                Comment


                  #9
                  Originally posted by xsfxsf View Post
                  Patrick I edited the post to make it sound less dire.

                  Main question is how to prepare for surgery.

                  Ideally for example I would like private, quiet, clean rooms in the hospital and rehab, enough skilled nursing help in the hospital for transfers without hugely long waits, and lots of attendant help at home the first few days. And some plan for bowel management. Neither seem probable.

                  Last time I was in rehab in this place they refused to put me in a room where the TV was not blaring 24/7. They felt my need for sleep was outweighed by the need of my roommate, a dementia patient, to listen to the TV all day and night. And they bungled transfers, nearly fell.

                  The hospital did not even have padded toilet seats or commodes either. Well they had them but could not find them. My point is I doubt they would accommodate me.

                  I hear ya XSF, it's always a stressor facing those decisions. I had to go thru three surgeries for a wound that wouldn't close. Each one took 8 weeks in a Clinitron bed at an assisted living; equals to 24 weeks. The first wasn't too bad as I didn't know what to expect. i may have been a bit harsh; my apologies. I have a cyst on the kidney too. It must be fairly common. I found my fears and reasons for not going in were unfounded once I got there. Perhaps a visit to where ever you're going to go would help alieviate your fears a bit. But in the end it basically ends up to two choices, now or later when you may not have the choice.

                  Comment


                    #10
                    Can your doctor not stipulate that you get a private room and a quiet environment? I’ve had 6 surgeries and 8 non-surgical hospitalizations since my original injury and I have never been put in a shared room. My insurance is just Medicare so nothing fancy.

                    Comment


                      #11
                      Originally posted by oldschool View Post
                      xsfxsf,
                      My urologist found a small mass on my right kidney back in 2017. He was able to remove the mass and spare my kidney. The recovery was relatively easy, but I already had a colostomy. I was back to normal activities in 6 weeks and cancer free 2 years and counting!
                      That is what my urologist told me 7 years ago.

                      i wonder what the exact recovery would be for kidney removal?
                      Last edited by xsfxsf; 10 Aug 2019, 5:40 AM.

                      Comment


                        #12
                        Originally posted by xsfxsf View Post
                        That is what my urologist told me 7 years ago. Now they say the kidney cannot be spared.
                        Surgery can be daunting but if you want to live as good a life as you can, you can. If you want a better, longer one, I would suggest, get the surgery.
                        I have no personal experience with colostomy; what I can tell you is a good friend had a bag attached while she was recovering from bowel cancer surgery. After a time the bag was removed and she was back to the usual.
                        After surgery and recovery, you may wish to carry on with the attachment. We all shit - in the toilet, on the bed, in the bed, in our pants, in a bag. It's fortunate for us who live with modern medical assistance, we have choices as well.
                        We become accustomed and accepting to new ways of coping too so why not a bag.
                        If it was me, I would opt for the surgery with the bag. Or rather, the other way round. Then again it is easy for me as it is an objective proposition from here - at this time..
                        Last edited by slow_runner; 10 Aug 2019, 6:52 AM.

                        Comment


                          #13
                          Just wondering if a biopsy was done to determine surgery is needed. Also, how big is the "mass". I guess I'm saying has doctor told you enough information so you can be more comfortable about the need for surgery?
                          Careful planning for after-surgery care would help - even if a short stay in rehab is needed. I would make sure the doctor/surgeon knows what you need for disability-related after care in case you need their support/orders for care. In my experience their 'routine care' does not include the unique needs of paralysis.

                          Comment


                            #14
                            Originally posted by annev308 View Post
                            Can your doctor not stipulate that you get a private room and a quiet environment? I?ve had 6 surgeries and 8 non-surgical hospitalizations since my original injury and I have never been put in a shared room. My insurance is just Medicare so nothing fancy.
                            I too have Medicare and they will not pay for a private room unless there is a strict medical need, such as the need for isolation or you are a threat to other patients and persons. The need for a quiet environment, though universal, I do not believe would qualify as a legitimate need.

                            You can make your best case and hope for the best, but in the United States private rooms are not the norm unless one is willing to pay for it or you happen to be in the right place at the right time in terms of occupancy rates and one is simply available.

                            Comment


                              #15
                              After doing bowel care between 2-4 hours a day 3 times a week for 24 years I got a colostomy. The past 5 years have been the best 5 years of my life after my injury. I wish I had it done when I was first injured.

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