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Free Again


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Burton Borrok Find out more about Burton Borrok
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  • Free Again

    Well folks,
    I have survived yet another hospital stay, and am now recovering from it. It’s a long story, but I will try to be as succinct as possible. As I previously posted, my local cardio is no longer under my insurance program, and I was unable to set up a working relationship between him and the specialist in Beverly Hills, and the Ins. Cardio’s were not working out, and the requested referral to another local cardio specialist in the plan died on somebody’s desk along with the request to be seen by a stroke specialist. (The MRI said something was amiss – but not another stroke thank goodness.)

    Anyway, the BH Cardio said it was bad medicine to be treating me via phone (I concur). I would have gone to the hospital if I had a cardio I trusted to treat me (my out-of-pocket guy can’t) so I spent a week and a half trying to set up a working arrangement. I saw my cardio Monday and he gave me the name of a cardio in the plan who he said was good and he could work with. Tuesday I saw my Endocrinologist because my insurance won’t cover more then 9,000 units of any one insulin in a 90 day period. (I will now start a third type of insulin and am cleared for 250 units a day total for the three of them.) Tuesday afternoon I packed some cloths, ate an early dinner, and headed for the fourth hospital (where the new cardio works.) So much for background.

    I was admitted through the ER, and a bunch of tests were set up. (The heavy swelling in my legs had by this time gone away to be replaced by a gurgling in both lungs – CHF.) I was put on a saline drip and given Lasix through the IV. Shortly thereafter my kidneys shut down and we were talking dialysis. By the way, it’s real scary to rely on an attending to prescribe meds when you know he has screwed up your regular drug regimen and you don’t know if the new changes are intended or not (had a bit of both). Anyway, the drip was going 24 hrs a day, and I was getting Lovenox (anticoagulant) shots in the abdomen plus Plavix. I had an almost unending nose bleed and my hemorrhoids also started bleeding. I refused further Plavix tablets and the bleeding stopped, however, my kidneys did begin functioning again – such as it is. I am now down to an eighteen to twenty percent function. I was able to get the creatinin level below five and avoided the dialysis, but I am relatively certain that it is an only temporary reprieve. (My creatinin level had gone to 6.1 and the BUN to 116 for those of you who know what that means.)

    I was taken off all diuretics and the Potassium, and my legs are filling up again. My feet are rounding out to look more and more like sausages, but I think my lungs are still clear. With the many blood tests, and the insulin shots, and the Lovenox shots in the stomach, I have masses of bruises and look like I survived a train wreck and not a hospital stay – but they don’t hurt – however my stomach is starting to bother me like it did the last time.

    I will see my endocrinologist one more time before he retires, and I’ll have to find a new one – but on the plus side, I think I will be able to set up a working arrangement for cardiological coverage, and my nephrologist and his associates came through like champs. On Monday I will see my PCP again, and will see if I can get her to move on the referral for the stroke specialist. I have my high risk caseworker all set to try to push it through, if she ever gets it, because it is for another out of plan doctor. (I was referred to an in-plan neurologist who said he was not a stroke specialist and could not help me – so there is a chance the authorization just might go through.

    By the way, the stress test knocked the **** out of me, but it showed that my heart was doing well. The EKG’s and the Echo also showed that no new coronary arteries were blocked. (These fool silver linings get stuck in the darnedest places.) So I guess I’m back to haunt you guys again - - deal with it.

    PS Happy Thanksgiving

  • #2
    Re: Free Again

    Sounds like it was an interesting week to say the least. Hope all gets better soon.


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


    • #3
      Re: Free Again

      It's nice to have you back, I was wondering how you were making out, now I know and it wasn't pretty.
      Between Mary and you, they could probaly come up with a couple good ER shows.
      Burt, hang in there, there are better days ahead.
      Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
      So if you are capable of thought then you are capable of great things
      Good luck and stay well.


      • #4
        Re: Free Again

        Great to see you back on the board!! It sounds like you need some good ole fashion R&R at home.
        Take it easy and be sure to take good care of yourself.

        Big hugs from NJ!
        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)


        • #5
          Re: Free Again


          I was wondering where you've been!

          Please know that I'm glad to see you posting again, and am sending my very best wishes your way.

          You bring us sunshine all the time, and so I hope that you know that I am here pulling for you. Always.



          • #6
            Re: Free Again

            Welcome back Burt. You have been missed.
            God Squad co-moderator
            Nothing is as gentle as strength and nothing is as strong as gentleness


            • #7
              Re: Free Again


              I was so worried about you, as you have not posted for awhile (with good reason) I am so, so sorry you had such an ordeal. That was brilliant of you to eat dinner, prior to going to the ER, so at least you had 1 edible meal that week. Sounds like the hits, just keep on hitting you!. You know how the "Art" classes use a naked model-well perhaps you could do something similar for a Med School. You could stand (actually sit, it's easier) & the Prof could just start at your head & work his way down to your toes. The student could take turns asking ? & then give a dx-can't be any worse than you get from most Drs & at the Hospital! Actually I just pictured that scenero & I'm laughing, instead of crying for You & Shirley. Poor Shirley, give her my regards.
              Perhaps next time you check in, your Son could post a few lines to let us all know, where you are so we can call & annoy you & send cards.
              No diurectics, I wonder how long that can last. I know the dangers to our kidneys, from all the Lasix & My Cardio keeps telling me-but what to do?
              Please, Please take care of yourself & feel better.


              • #8
                Re: Free Again

                Glad to hear that you are hanging in there, welcome back. You really were missing in action there for a bit.

                You are in my thoughts and prayers. I hope you were able to enjoy the holiday and the fluid problems cut you some slack soon.

                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


                • #9
                  Re: Free Again

                  Hi Burt,

                  I'm sorry to hear about your stay in the hospital. I'm glad to see you back here. Your knowledge and caring was very missed. I always read your posts.

                  I hope you feel much better very soon. You are in my thoughts and prayers.


                  49 yrs. old
                  Diagnosed at 31.
                  Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                  First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                  Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                  Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                  My brother passed away suddenly at 34 yrs old from HCM.
                  2 teenage children, ages 17 and 15.


                  • #10
                    Re: Free Again

                    Hi my friends,
                    Well, I’m well on the way to recovery, but there are still a few bumps in the road along the way. For example; since everybody in the hospital loves to ‘stick’ you, plus I take insulin four times a day, the Lovenox shots in the stomach and the Plavix have left my arms and abdomen a mass of big bruises. They don’t hurt, and are fading, but they still shake Shirley when she sees them, and all that blood thinner has left me with another attack of hemorrhoids. (No, I’m not going to say what a pain in the a** that is, but it does give me an upset stomach also.)

                    As some of you know, Shirley is an epileptic and doesn’t drive. Consequently, when I am hospitalized she becomes a prisoner in the house. She came to see me a few times via the courtesy of friends, but she hates to impose, and it’s always at the convenience of the friend to drive her back and forth. The hospital I chose is a distance from the house, but I wanted a particular cardiologist, and that is his hospital. For Shirley to take a taxi to visit me would cost over $30 each way, each time, which would be somewhat silly. (We do phone a lot.) Other odd things go on also. She is afraid of having a seizure in the shower when I’m not home, so she takes sponge baths instead, which is never as satisfying.

                    There are other things that go on also with me in the hospital. I have yet to see an attending get my medications right. For example, I take four 5mg Glynase tablets a day. Two a half hour before breakfast and two a half hour before dinner. No hospital will follow that timing, but the attending wrote two tablets four times a day. I had to watch to not get overdosed. At the after care facility they wrote two tablets once a day, so I didn’t get the proper dose there either. Then, the minute they see that I take insulin they put down ‘sliding scale.’ This means that they try to give me like six or eight units of regular insulin instead of the 45 units of my insulin. Mine is very fast acting. I have to take it no more then ten minutes before I eat, and it’s gone in two hours. They try to give it to me an hour and a half before I eat – or over an hour after. Some mix the regular with mine to save giving me two shots, and my insulin specifically warns that it is not to be mixed with any other insulin. I wind up insisting I draw and give myself the shots. My last morning there my blood sugar was 120 (top of the good scale) so they refused to give me any insulin at all. (By lunchtime it was over 300 again.)

                    Then of course there is the Verapamil. I take 360mg per day. They send up 180mg tablets, and I take two – but the pill roller either forgets to give me any, or only gives me one tablet. I have to go through the pills and make sure I’m getting the right amount of each drug. Some drugs are stopped on purpose, some drugs are added, and some are just screwed up. I have to go through the attending’s notes and figure out which is which, all without him saying one word to me about it. It can get pretty unnerving. I’m always grateful when I survive another hospital stay, and consequently don’t go in as quickly as I should. Now with my kidneys failing, I guess I no longer have that luxury. I guess I will now have to make up a page of instructions to go with the drug lists I provide to them.

                    I’m thinking of taking a home study course in brain surgery and getting a mail order license. The only problem is I don’t think I can afford the mal-practice insurance. Oh well, maybe I’ll become a plumber – they make more money on house calls anyway.

                    Well golly folks, that was fun. I feel like I struck a blow for patients in hospitals all over the world. There were lots more, but enough is enough. To give them their due, I probably would not be here to complain without them. Hope you enjoy your thirty days of turkey leftovers.