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Update--My app with Dr Wigle

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  • Update--My app with Dr Wigle

    It has been a long week, and I have hesitated posting about my appointment because it didn't go as I had hoped. We have been preoccupied with other things as well, so I have just yesterday been able to really let the whole situation sink in.

    First off though I would like to say that sadly my husbands aunt, who had been very ill with breast cancer for several years passed away while we were in Toronto, so we flew home on Friday. She was only 54 and although we new she was not going to recover this time, it was still very difficult. Makes my problems seem small in comparison.

    As for my appoinment, it could have been better. The day was long and exhausting. The walking took so much out of me. A LOT of walking and a LOT of waiting. The echo was over an hour long and so painful. My chest was still sore when we flew home on Friday (3 days later). By the time I saw Dr Wigle, I was tired, hurting and just feeling really horrible. I just wanted to go home.

    There was no question of his knowledge on HCM and I am atleast comforted by knowing that I have been evaluated by a specialist.

    I (as always) had a very hard time communicating with him, and I know I didn't convey to him just how symptomatic I am.
    The only thing I did with my list of questions was wrinkle and twist it around my fingers. I didn't look at it once, and didn't ask him a single question. Even when he suggested a med change-I didn't even ask him what he was switching me to. I just sat there looking stupid!!

    On days like those I wonder how it is that I am able to walk upright.

    So I don't know where I will go from here. It seems a long life to live like this, but I am not fond of my other option!!

    On the upside, I was able to get out and enjoy some of my time while in Toronto, which was nice. Oddly it felt great to be out of my 'comfort zone'. And flying, which had been a huge fear of mine, turned out to be quite enjoyable. So all was not lost.

    Well that about sums it up.
    Take care all
    Pam
    It's not what you gather, but what you scatter that tells what kind of life you have lived.

    Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.

  • #2
    Pam.

    I am sorry that you had such a difficult time. It is so hard when you expect to receive some answers and be offered hope and then experience disappointment. You are in my prayers.

    Peace,

    Leon
    God Squad co-moderator
    Nothing is as gentle as strength and nothing is as strong as gentleness

    Comment


    • #3
      Pam,

      Please try not to be discouraged. A day at the specialist (that sounds like it should be a poem or a song) is always very tiring, and i think just about everyone here knows exactly how you feel.

      When i go to Cleveland for appointments with my specialist, it is always such a long day with drive time and sitting around in waiting rooms for hours and hours, that by the time i finally get to see Dr. Lever at the end of the day i'm usually so tired and grumpy that i just want to get the damn thing over with and start the long drive home. I always feel so rushed when i'm sitting in front of him too, that if i'm lucky, i'll address maybe one or two questions on my list and spend the rest of the time crinkling it in my hands and looking at the doc with a blank expression on my face. Yikes!

      But in the end, somehow the work gets done, and you got the important stuff out of the way. Now that you've met Dr Wigle and had your tests done, you can rest up a bit, think about your visit there, and then call or email him with the questions you still have.

      Don't forget, you're an HCM'er... it all looks better after a nice long nap!

      Take care,

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

      Comment


      • #4
        OK, lets go back to the begining - What did your echo show? Was it the same as your local echos or was there any differences in the measurements?

        What med did he suggest you try?

        Do you have a plan to start the new meds?

        If you feel you did not get your questions answered why not call him and ask him?


        Please please please do not be so hard on yourself!!! BIG HUGS!!!!!!!!!!!!!!! I am also very sorry for the loss of your aunt - may she rest in peace.

        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


        • #5
          Oh, Pam. You have had enough other things to worry about without the stress of a doctor appointment. Just want to offer my condolences.

          Reenie
          Reenie

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

          Comment


          • #6
            Hi Pam, I know the visit can be trying, been there done it and it usually takes at least 1/2 a day and that's for a check up, not a first time full evaluation.
            For years, I had no idea what to ask Dr. Wigle until I started getting information from this site, so most of my visits prior to a couple years ago went pretty well as yours did.
            Once I had the information though Dr.Wigle was more than willing to talk until I had exhausted my questions.
            In any event he would be sending your doctor a full report on his findings and recomendations. When see your doctor, maybe that would be the time to get your answers, so you still have a shot at getting the info you wanted.
            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.
            Glen

            Comment


            • #7
              You are all too kind, thanks for your replies.
              The information will be sent to my GP as well as my cardiologist. I will have to wait to speak with my cardiologist about the results because my GP doesn't really have a grasp on HCM.
              He didn't go over any of the measurements with me, although I am sure he would have if I had asked. I do remember him saying that even with the Amyl Nitrate my gradient was pretty mild. I don't know if there was any change from previous echos.
              Lisa, I didn't even ask him what medication he was going to switch me to. I was completely zombie-like. He said he was going to switch me to a slow release med. that I will take twice a day, but thats all I know. I will begin this new med as soon as my GP gets all the info from Dr Wigle.. Probably within the next week or two.

              Thanks again, you guys(and gals) are great.

              Pam
              It's not what you gather, but what you scatter that tells what kind of life you have lived.

              Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.

              Comment


              • #8
                Pam

                I felt the same as you when i seen doctor Maron i was just so overwhelmed by everything, i never asked my numbers either but you can get them, i called Dr. Maron's nurse, you could do that and ask her what meds you are going to be on and that will give you a chance to research them, i usually carry a record around with me as i live 2 hours from my cardiologist, that is why i wanted a copy i now have the copies for myself and i'm really sorry to hear about your husbands Aunt Passing, it is always bad to lose a family member at such a young age

                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


                • #9
                  Pam ,

                  So sorry for the loss of your husbands aunt . She was young and it is never easy any time to say goodbye to our loved ones even when it is expected, young or older.

                  I think the others have given you some excellent advise and there is certain hope you will get to the bottom or top of the question list.
                  I empathize with you about the soarness of the echo. I have very small windows that result in greater pressure needed to visualize. I always end up with a raw burning abrasion where the transducer was used. I have found that a little dab of desitin ointment helps to soothe the area and help it heal in several days. Hope this helps, ouch, ouch.

                  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


                  • #10
                    Well, I’ve heard of Canadian Bacon, - - but what’s Canadian Pam?

                    Gotta couple of quick remarks for ya –
                    - Sorry to hear about your aunt-in-law. At least her struggles are over and now she can rest in peace.
                    - Glad to be talking with you again. I missed our ‘talks’ from the past.
                    - As far as the pain from the Echo probe in the ribs, I have found that alcohol is the best remedy – liberally applied to the inside of the body. It doesn’t really help the bruise any, but who cares?

                    Now for the real reason I wrote. I’m sorry but I have forgotten if you are able to communicate with Dr. Wigle via fax, email or regular mail with a return stamped envelope. In any case, write him a letter and explain that you were so worn out by time you got to see him you couldn’t think straight, and you would really appreciate it if he would be kind enough to answer your questions now.

                    List the questions and leave room for his replies – on email you could just indicate where he can insert his remarks – then ask away. At best you will get answers to all your questions. At worst you will have wasted the cost of two stamps. Not a big risk really for what you hope to gain by it. Of course you can still follow up with your local cardio, but there is nothing like getting the answers from the expert himself.

                    Good luck and keep smiling – (makes them wonder what the heck you’re really up to.)
                    Burt

                    Comment


                    • #11
                      Pam, I'm so sad your experience to Toronto and Wigle went so bad.

                      Please call his office and get some more info. Explain the stresses you were under and how you are at a loss of information.

                      Wigle would have generated a letter about your meeting with him, to send to your Cardiologist or Family doctor. Ask Wigle for a copy of that letter. Or worst case get a copy from the doctors that he sent it to.

                      That letter is very important, it will have all the stats in it, and explanations of future plans in Wigle's eyes.

                      Sharon is Wigle's Administrator. She is very nice and will guide you the right way to get the information you seek.

                      Comment


                      • #12
                        Thanks Paul. I had talked to Sharon a few times before my appointment, and your right, she was very nice. I have been meaning to call but I have been waiting for the info to be sent to my GP here. I guess I could call tomorrow and have her fax me the letter atleast. Thanks for the suggestion. Hope you're doing well.

                        Take care
                        Pam
                        It's not what you gather, but what you scatter that tells what kind of life you have lived.

                        Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.

                        Comment


                        • #13
                          Pam ,

                          I hope you are able to get some clear answers soon. Persist and you will get to the bottom of it all. Sounds like the whole experience was just so overwhelming and a big drain . Take time to refresh and dig in.

                          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

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