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Burton Borrok Find out more about Burton Borrok
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  • #16
    Re: Another return

    Thinking of you , Burt.

    Feel better.

    Pam
    Dx @ 47 with HOCM & HF:11/00
    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
    Lead failure,replaced 12/06.
    SF lead recall:07,extracted leads and new device 2012
    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
    Genetic mutation 4/09, mother(d), brother, son, gene+
    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

    Comment


    • #17
      Re: Another return

      Hi Burt,

      Slow down and let the doctors catch up........Boy are you on a roll. I hope all goes well for you. My thoughts and prayers are with you.

      Virginia

      Comment


      • #18
        Re: Another return

        Thanks for the good wishes guys,
        Today I saw the rheumatologist in the morning and got good news Ė no Lupus Ė in fact everything is Ostio. All he can do is to give me pain killers, but I can get by with acedamidafin so I donít walk around like a zombie.

        In the afternoon I saw my PCP and I guess it was her turn to hit me. I now have a prostate problem. We put it off for a month when she will also freeze off a pre cancerous patch on the end of my nose. The darn thing keeps growing back and has to be frozen off again every year or so.

        Tomorrow I get my Oximeter. My O2 saturation is becoming the number one problem of late. I canít walk from one room to another without having to sit down to catch my breath. My O2 saturation drops to about 70%, or lower, even on four liters of O2. My pulmonologist is on vacation so I wonít see him for two weeks yet. Iíll burn that bridge when I come to it.

        You know if I have to struggle with this crap for another twenty years Ė Ė Ė Iím going to be an old man. Remember Ė Smile and the world smiles with you. Laugh and they call you an idiot. This has been the first really good day since 12/16 when they dragged me off to the hospital so Iím not complaining.
        Burt

        Comment


        • #19
          Re: Another return

          That is good to celebrate those good days Burt. I am sure it helps on the not so good days to know you will have a good one again. Hang in there.
          Midge

          Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
          ICD&Pacemaker 1996
          Heart transplant March 19, 2004 @ Mayo Rochester
          Mom of Kaye.

          Comment


          • #20
            Re: Another return

            Hi Midge,
            Listen dearheart, I have a major problem with traveling, what with the dialysis every other day plus the 24/7 oxygen plus not being able to walk more then a few feet so I really would appreciate it if you have one fantastic vacation and then report to us on the board so we can share in the afterglow. If anybody deserves a special vacation you do.
            Burt

            Comment


            • #21
              Re: Another return

              Well folks,
              I went and did it again. Last Thursday I got back from dialysis and I was pretty pooped. My home health care nurse called and I mentioned that my chest was tight since noon the day before. Well she called my PCP and she called me and ordered me to go back to the hospital. I was there for four days and just got out yesterday. It seems that beside the shortness of breath my pressure was quite high, and they used a number of drugs, both orally and by injection to get it under control, and now I am weaning off Prednisone and they added Hydralazine to my daily drugs.

              Tomorrow I have another dialysis treatment and I wonder what my BP will do with the new drug. Sometimes it used to fly high and sometimes it would plummet. Oh well, time will tell. If possible I think I am even shorter of breath then I was before. I had to go to the drugstore to get the script for Hydralazine filled and I was so over stressed I wasnít sure I would be able to get back home Ė even with my son driving.

              One thing though, my estimation of the nurses must show because I was treated like a king. Anything I wanted they were quick to get, and they stopped in fairly often to ask if there was anything I wanted. Of course I flirted with all of them and that didnít hurt anything either. I had popsicles, ice cream, puddings, sodas Ė they offered sandwiches (which I only took once), fruit cups and whatever else they had. Once I told them I was going out for a pizza and asked if I could bring them anything while I was out, but they wouldnít let me go. (I wonder why.) When a shift ended they would stop in and say goodnight, and when I left they all said goodbye. Iím not nearly as afraid of going to the hospital any more. This hospital is head and shoulders above all the others Iíve been to in town, and they have an unbelievable staff.

              While I was there I asked one of the nurses if she could check the biopsy results from Mayo. She looked it up and read it for me. There was no unusual or strange diseases to note. There was scarring from pneumonia and asbestos though. We know the pneumonia was really CHF which I have had for about two and a half years now, but after sucking all the fluid out of me with dialysis (over thirty pounds now) the fluid in my body is at a minimum. I guess Iím just stuck with the SOB and will have to live with it. I am trying to get the insurance to spring for a power wheelchair and a rack for the back of the car. More on that later.
              Burt

              Comment


              • #22
                Re: Another return

                I hope the rest of the week is uneventful and you regain some strength.

                Reenie
                Reenie

                ****************
                Husband has HCM.
                3 kids - ages 23, 21, & 19. All presently clear of HCM.

                Comment


                • #23
                  Re: Another return

                  Wow Burt,

                  I had a feeling you were back in. Get better , You hear?

                  Pam
                  Dx @ 47 with HOCM & HF:11/00
                  Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                  Lead failure,replaced 12/06.
                  SF lead recall:07,extracted leads and new device 2012
                  [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                  Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                  Genetic mutation 4/09, mother(d), brother, son, gene+
                  Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                  Comment


                  • #24
                    Re: Another return

                    Burt

                    When it rains it pours, and how is Shirley doing through all this you take care of yourself please

                    Shirley
                    Diagnosed 2003
                    Myectomy 2-23-2004
                    Husband: Ken
                    Son: John diagnosed 2004
                    Daughter: Janet (free of HCM)

                    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                    Comment


                    • #25
                      Re: Another return

                      Well, todayís dialysis went pretty well except at the end. I could barely move. I weighed out and the woman in the office had to take my number back in as I couldnít do it. Instead I went to the john Ė and ran out of oxygen. I just got out of the bathroom door and couldnít go any more. A nurse finally pushed me to my car while I sat on my rolling walker. I got another tank of oxygen and rested until I could drive home. Checking out of the clinic took over forty-five minutes Ė and the car was parked right at the curb.

                      If I donít get a power wheelchair I will not be able to function any more, and Iíll also need a power hoist on the back of the car to carry it. My scooter is in the trunk of my car and I have a power hoist for it, but the hoist has to be assembled and the scooter has to be guided in and out. I can no longer do these things Ė and my Shirley canít manage it either. It seems that she is also stressed and having seizures when I am hospitalized. With a power wheelchair Iíll be able to do things again without getting so over stressed. Iím looking forward to it. Right now my lungs hurt and that brings on the angina - a vicious cycle.
                      Burt

                      Comment


                      • #26
                        Re: Another return

                        Havng some tough times you are and I am sorry for your troubles. This may be a stupid question, but don't they have senior citizen transport vans to take you and bring you home after your treatments? I am having some red flags fly up as I recall from my days as a dialysis nurse when some of my patients drove and should not have . There was a lot of passing out as I recall following many treatments. I did work at a large center and there were a lot of patients , so this occurred a lot but, we did recommend transportation for some of our more frail / tenuous cases. Have you looked into it? I would hate to hear that you passed out or had an accident ; this could then lead to a worse scenario for you.

                        Pam
                        Dx @ 47 with HOCM & HF:11/00
                        Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                        Lead failure,replaced 12/06.
                        SF lead recall:07,extracted leads and new device 2012
                        [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                        Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                        Genetic mutation 4/09, mother(d), brother, son, gene+
                        Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                        Comment


                        • #27
                          Re: Another return

                          Hi Pam,
                          Thanks for the concern, but Iím still OK with the driving. If I start to get dizzy I plan to pull over and wait it out, but that hasnít happened so far.

                          They do have transportation services to and from the house, and it would only cost $2 each way. The trouble is that I would have to go to the end of the driveway to get picked up, and back when I get dropped off. This is considerably further then I go now, and I have trouble handling the distances I now have to go. I am pushing for a power wheelchair through the insurance, but I will get one, one way or another Ė and soon.

                          Saw my PCP today and she agrees. She also said with all the tests I took my heart was OK. The problem is that the stress on my heart is caused by the difficulty breathing, and frankly I donít see that getting much better. At least with the wheelchair I will be fully functional again. Itís wonderful the way you can circumvent so much that was impossible hurdles just a few years ago. No wonder the life expectancy just keeps getting longer and longer.

                          I hope you are over your problems also. I donít have too much healing energies to spare, but I sent you all I could. I hope it did the trick for you. Take care now.
                          Burt

                          Comment


                          • #28
                            Re: Another return

                            Thanks Burt, I am doing much better and I am sending back some healing thoughts to you as I think you could use some help from us all.

                            Still having some lower extremity swelling problems and right leg problems. I keep thinking of you and hope my kidneys are going to keep doing the job. I remember so many years ago looking out over all the multitudes of dialysis patients and knowing full well then, how non discriminatory renal failure was, I often would ponder as I looked at all the nurses and techs and thought... how many of us will end up in such a place in these beds and recliners with end stage renal failure. It was a scarey thought and back then I had issues that were effecting my kidneys that the doctor told me could land me one day in the very place I worked. Shivers go up my spine to think...

                            Continue to heal Burt .. positive thoughts being shifted back to you.

                            Pam
                            Dx @ 47 with HOCM & HF:11/00
                            Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                            Lead failure,replaced 12/06.
                            SF lead recall:07,extracted leads and new device 2012
                            [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                            Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                            Genetic mutation 4/09, mother(d), brother, son, gene+
                            Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                            Comment


                            • #29
                              Re: Another return

                              Hi Pam,
                              I very glad to hear your feeling better. Keep up the good work. I hope you gat a handle on the swelling problem also. Iím now thirty pounds lighter with the fluid they have taken off me (over time.) Actually Iím now skimming over the bottom of my dry weight, my ankles are beginning to look the way they used to Ė but my lungs are still a problem. I wonder how much this dry out is effecting my heartís functioning, but testing still shows it running OK.

                              Today I see my pulmonologist first thing. My home health care nurse was here yesterday and wanted to put me back in the hospital yet again, but the pulmonologist wanted to see me first. After I see him, Iíll have three people coming to the house a couple of hours apart Ė the home health care nurse again, the physical therapist again, and a man to evaluate me for that darn wheelchair. It should be an Ďinterestingí day. My PCP already said that she believes I need the power wheelchair. My therapistís all say that I should not over stress myself, but with all the running around I do, thereís no choice. A friend will be taking me to the pulmonologist this morning Ė but as I said I would have no trouble driving Ė itís getting to and from the car to the doctorís office or the dialysis lab thatís the problem. My range of walking without a problem starting is now about five feet.

                              Well dearheart, Iím afraid this is just another hurdle to get over, and Iím sure we all have our challenges to deal with. I think the biggest one is getting the insurance to pony up with the funds to buy the power wheelchair plus the rack for the back of the car. Take care of yourself and feel better.
                              Burt

                              Comment


                              • #30
                                Re: Another return

                                Burt,

                                I hope that today brings good news on all fronts.

                                Rhoda

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