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mtlieb Find out more about mtlieb
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  • #31
    Re: Off to Cleveland...

    What a relief to hear you are finally being treated properly. No trouble with the sulphur thing? You know, about the cath and the dye – I have damaged kidneys and before the procedure they did a couple of things.

    First, they brought me in a day early and gave me a 12 hour saline drip to hydrate me. I know it sounds funny while on Lasix and already flooded, but that’s what they did. The day before the procedure they gave me two doses of Mucomyst, morning and night – orally. The day of the procedure they gave me a third dose before the procedure and I took it morning and night for two days after the procedure. Mucomyst smells like rotten eggs, and tastes worse, even though it’s only a tiny bit at a time. (I can’t remember the dose, but it was only a couple of cc’s.) The nurses offered to mix it with orange juice, but with my diabetes I took it straight, with a small amount of apple juice as a chaser.

    With an angiogram or heart cath you are normally on the table for somewhat less then an hour – sometimes a lot less. My last cath and stenting was a problem and I wound up on the table for six hours over two days. (They had to break after three hours because of the load of dye used.) On day two my pressure dropped to 70/40, I developed pneumonia, and my kidney function went to 4.4 (1 is normal and five is where you start to look at dialysis.) The Mucomyst saved the day and drove my kidney function number back to my normal base line of 2.5 – (they are damaged after all.)

    I found the following on the internet while trying to remember the name of the drug they used on me. You might find it interesting.

    Several things can be done to lessen the chance of a patient developing kidney failure with a catheterization, though nothing is guaranteed to work. First of all, using one of the newer types of dye (newer as in available in the last 5-10 years) called “low osmolar” dye helps lower the risk of kidney failure in people with kidney problems to start with, though it does not lower the chance of kidney failure from dye in people with normal kidneys. Secondly, flushing the kidneys with intravenous fluids with or without intravenous lasix or mannitol (to increase how much urine the kidneys make) helps. Lastly, a medicine called Mucomyst given intravenously is standardly given by iv to help lessen the potential damage to kidneys from the dye.

    Hope the info is of some use to you.
    Burt

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    • #32
      Re: Off to Cleveland...

      BIG SIGH....

      Well that gives me one less thing to worry about!!! Jim I am glad you had a good day in Cleveland, I am thrilled you have your cousin with you for support and I am RELIEVED you are getting the care you need!!!

      Big hugs!!!

      NEXT STOP MYECTOMY!!!!!!!!!

      You will do great!!!!!!!!!!!!!!!


      Lisa
      Knowledge is power ... Stay informed!
      YOU can make a difference - all you have to do is try!

      Dx age 12 current age 46 and counting!
      lost: 5 family members to HCM (SCD, Stroke, CHF)
      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
      Therapy - ICD (implanted 97, 01, 04 and 11, medication
      Currently not obstructed
      Complications - unnecessary pacemaker and stroke (unrelated to each other)

      Comment


      • #33
        Re: Off to Cleveland...

        Thanks everyone for being so helpful and supportive to my cousin. I've heard from him and will talk to him later today. We come from tough stock and he'll make it through this with flying colors.

        Laura

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        • #34
          Re: Off to Cleveland...

          Hi, Cousin Laura,

          Thanks for supporting Jim! Welcome to the boards. I am sorry you have been having a problem with UC and hope you are feeling much better now.

          Rhoda

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          • #35
            Re: Off to Cleveland...

            Jim, I'm glad to see that you have found your "comfort zone" that place where you feel secure enough to move ahead. This board helped me reach that place with the knowlege and support that I found here. Speaking for myself I have never been sorry for my myectomy and I continue to grow stronger. Rick
            \"A Misty Morning Does Not Signify A Cloudy Day\'

            Comment


            • #36
              Re: Off to Cleveland...

              Jim

              You will be in good hands don't pay any attention to me and my problems that's what i get for not going to cleveland like i wanted to but i just didn't have the energy to fight with my insurance company but i do now so here we goi just want to know if this is as good as i'm going to get and if so then i will have to learn to live with it, but you can bet i'm going to fight going what ever direction it may take me, Good Luck in cleveland i think you made the right discision, it's been a long time coming

              Your Friend
              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

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              • #37
                Re: Off to Cleveland...

                Jim,

                I can not believe the lengths you will go to, just to get out of doing a happy dance at the HCMA Conference.
                The rapport we all feel for you is tangible, despite the fact that to most of us you are just a bunch of words on a screen.
                If you need anything from me...advise or a person to vent to, either pre-op or post-op, just PM me and I'll shoot you my phone number.
                Now that you're on lasiks, be careful about potassium. The general rule is that you lose alot so they suppliment you, but in my case it turned out the suppliment was too much and caused severe nausea. 20/20 hindsight, but I hear that they have ways to monitor your potassium level so nothing bad happens to you.
                We better see you dancing at the 05 conference!
                Fx

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                • #38
                  Re: Off to Cleveland...

                  Welcome Cousin Laura! Love your name! That's my oldest daughters name too and she is lovely and thoughtfull like you ! Jim is lucky to have you a part of his support team!
                  I second what Felix says. Jim, if you need to talk or have any questions just ask. I'll give you my phone number too. I know a lot of the woman perspective but also coached my BIL through open heart 12 weeks after my surgery. Countdown to less symptoms and feeling much better begins Jim. ..... Thinking of 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


                  • #39
                    Re: Off to Cleveland...

                    Originally posted by mtlieb
                    As far as the insurance issue goes, i got a call from my PCP finally. According to them, they called the insurance company today and were supposedly told that it is the specialist that must call for pre-authorization and that they were right all along. LoL. Ping-pong anybody? I give up! These people are driving me frigging nuts
                    I called my insurance company again first thing this morning. There is NO record whatsoever that my PCP ever called them. The only notes on my record are that my cardiologist and specialist have both called to try and get a referral for me. My PCP's office flat-out lied to me about making the call! On top of that, when i then called them to find out why they had said this, i got yelled at by the office manager (Stephanie): "What did you think you were doing going off to Cleveland without pre-authorization? I hope you realize now that you are responsible for that bill, and that this is not one bit our fault."

                    Them is fighting words, baby

                    Folks, i really didn't want to spend the next week stressed out over this and fighting over insurance matters, when i should be getting prepared for major surgery, but it's time to start kicking some butt here.

                    I'm taking Pam's advice and drafting a letter documenting everything that has transpired. This will be faxed to my PCP first, who i have not been allowed to speak with directly, and may quite honestly not even be aware of what his staff is doing. Copies will also be faxed to my local cardio, my specialist in Pittsburgh, the Cleveland Clinic, and my insurance company, so that there will be no question whatsoever as to where this stands right now. If this doesn't get the matter resolved, i will forward the document to the PA state insurance board, the office of legal aid, and every other state or federal agency i can think of who can put some pressure on these idiots.

                    You can all join in the fun as well here! LoL. If you can think of ANY government agencies that may even remotely be able to provide some assistance, just post their names and/or fax numbers here and i'll put them on my list

                    Well, i guess this will at least give me something to do over the next ten days to take my mind off of the upcoming surgery.

                    Thanks to everybody for your assistance,

                    Jim
                    "Some days you're the dog... some days you're the hydrant."

                    Comment


                    • #40
                      Re: Off to Cleveland...

                      Jim,
                      I was off the board for a few days.What a run you have had the last few days. I am glad you don't give up. I hope all will be worked out soon so you can rest up for your hospotal stay.

                      You will have a lot of people pulling for you. Your name will be going up through a lot of prayers. Keep us posted and good luck.

                      PS. Nice to meet you Laura. Jim, is very lucky to have you in his life.
                      Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

                      Comment


                      • #41
                        Re: Off to Cleveland...

                        you GO, Jim !!!! what a lot of grief and aggrevation (which you need like a hole in the head!)....I'm sure someone can resolve this mess for you...and I'm sure you will do great with the myectomy. You're in my prayers...we're all pulling for you!
                        \"It is not length of life, but depth of life.\"

                        Ralph Waldo Emerson

                        Comment


                        • #42
                          Re: Off to Cleveland...

                          Hey Jim,
                          I read your posting after I PM’ed you. I wouldn’t hold back on any of the offices you mentioned. The state insurance board and Legal Aid being indicated as recipients of the letter just might move things off the “dump it” file.

                          Make sure you include what your PCP's office said, and the fact that the insurance company has no record of any such communication. Don't forget the office manager's accusing you of getting medical help without the PCP's permission and saying that you will have to pay for it yourself.
                          Burt

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                          • #43
                            Re: Off to Cleveland...

                            Hi All,

                            Dr. Lever just called... my myectomy has been moved up to this coming thursday, June 3rd. Apparently Dr. Lytle was requested to do my surgery, and he is available that day. I'll be heading up to Cleveland on monday, be cathed on tuesday, various fun things on wednesday, and myectomy on thursday.

                            They want to move this along fast, and that is just PERFECT for me... i'm going to be so busy getting things ready over the next couple of days, i'm not going to have a lot of time to sit and think about the surgery

                            As far as the pre-authorization goes, i explained the PCP situation to Dr. Lever and he sounded pretty mad. He asked for my PCP's number and is going to call him personally to find out why the **** this hasn't been done for me yet. Woo hoo! I've been told by his nurses that you do NOT want to get Dr. Lever mad. (I do believe somebody's going to get their butt kicked here.)

                            I'll keep ya posted,

                            Jim
                            "Some days you're the dog... some days you're the hydrant."

                            Comment


                            • #44
                              Re: Off to Cleveland...

                              Jim, I'm so glad that you are really moving along in your care now. I hope Dr Lever kicks some butt (figuratively speaking) and gets your PCP to do his job. I'm looking forward to your updates!

                              Reenie
                              Reenie

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

                              Comment


                              • #45
                                Re: Off to Cleveland...

                                Jim best of luck for a speedy recovery, we love you and care about you always, now you behave yourself don't give those nurses too hard of a time and don't over do it getting ready for this or you will be in the hospital sooner you know you still have CHF, i know we all tend to over do don't we

                                Your friend

                                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

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