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  • Dr problems....Vent...MHI

    I need to vent, the last couplde days have been miserable. I called my Dr to see if she had set up my app for my new cardiologist and she hadn't. She was also supposed to send me to an allergist and the sleep clinic for testing, she has yet to get those balls rolling either. I am so upset about this. I have been feeling horrible for 5 months now. My cardiologist doesn't want me to come in for any more testing, my GP is useless. I made an appointment with another GP(there are only 3 here), I see her on Friday.
    Anyway, sorry about complaining when you all have your own problems, I just feel lost.
    I really want to go to Minneapolis to see an HCM specialist but am having a difficult time getting a refferal(-my GP had no idea that there were even HCM specialists(and she didn't really seem to believe me when I told her their was). She decided I just needed a second opinion from another cardiologist.
    Has anyone else gone to MHI? I am determined not to give up and going to MHI is going to be the first words out of my mouth when I see this new Dr.

    Thanks for listening...
    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
    Re: Dr problems....Vent...MHI

    Pam, a lot of people here have felt the same way you do now. MHI is a good place, no doubt. Did you know that there is also a Canadian doctor who is an HCM specialist? He's in Toronto. I'm not too great with geography, though, so MHI might be closer for you. Please take care and know that we're here for you.

    Reenie
    Reenie

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

    Comment


    • #3
      Re: Dr problems....Vent...MHI

      Thanks Reenie

      Yes I have heard about the HCM specialist in Toronto, unfortunately for me, I live in the middle of nowhere. Toronto is about 30hrs away, Minneapolis is about 5-ish hours away. I already have to drive 4 hours just to see my cardiologist so I figure I could handle 5 hours. Hmm...I may have to consider moving.
      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


      • #4
        Re: Dr problems....Vent...MHI

        Hi Pam, I can sympathize with the situation you are currently going through and hope and pray that things work out for you. I had a similar experience. On Friday I started having a totally unexpected allergic reaction to all this southern pollen that had suddenly exploded into my breathing space. I called my cardiologist office for an OTC that would be safe for me to take. I was told my cardio didn’t “do” allergies and I would have to call my PCP. I told the nurse-- I’m the only patient with HCM my PCP has and would really feel a lot safer if the cardiologist would just give me a recommendation- PLEASE!! Never did get the name of an OTC. So I call the PCP and left a message- this was on Friday. On Tuesday my PCP office calls with the ever elusive and long sought after OTC -Claritin. My allergies were long gone by then thanks to the information I found in the archives. Love those archives!! Saw my cardiologist this past Mon, and asked him if he would give me a referral to see an HCM specialist and he said no. That was the first of several questions I asked him and things didn’t get much better. I asked about testing for sudden death. Answer. No. He said because of my age (53) and the fact that I wasn’t an athlete. Well, that was certainly news to me .I thought my herculean effort of 1.5 MPH was really pushing the envelope. . There was a sliver of hope, he is doing another set of tests the holter and echo. Finished the holter yesterday and the cardiologist will be in the room with me when I have the echo on May 5. I am pleased about the tests so I will have something to compare with the initial test done in 2001. Well, sorry about all the moaning and groaning. What keeps me going? The thought of being serenaded by all the little cicadas! Lisa, if you read this sorry I missed you on the 19th. Thought I would wait and call again after I get the results from my latest tests. I’ll be in NJ may 13 through the 23 but don’t think I will have time to make it to Hibernia. Maybe this fall.
        Take care everyone. Joyce
        \"We are not human beings having a spiritual experience. We are spiritual beings having a human experience.\"
        Pierre Teilhard de Chardin

        Comment


        • #5
          Re: Dr problems....Vent...MHI

          Ladies,
          I think the intelligent among us has felt the same frustrations and have gone through a series of – “dump the bum and bring on the next one. Just maybe this one will be better.” I have a troop of doctors and I believe I’ve changed every one at least once – one in particular four times already.

          Believe it or not, every once in a while you win one and uncover a keeper, but you have to demand the treatment you deserve. You have to be proactive in your care and not settle for second best. Not everybody graduates at the top of their class, and not everybody really cares about all their patients, and not everybody is willing to listen to another doctor’s recommendations, and not everybody is open to learning something new, and not everybody is open to a second opinion - but then not every doctor goes home, kicks off his/her shoes and forgets everything for another day either. We ask a lot of our doctor’s and have to work hard to find somebody who really measures up – but scattered among the swine are a few pearls.

          Keep looking and demanding until you get your very own pearl.
          Burt

          Comment


          • #6
            Re: Dr problems....Vent...MHI

            Thanks for the support. You're all like a good fitting bra!
            Its 2am, I am so tired and yet I can't fall asleep, the Benadryl didn't work.
            I had a 'gem' of a Dr(GP) a couple yrs back but he moved, as do most Dr's. They do a couple of yrs rotation here and then they split for the city-few want to settle down in a small town. The Dr I am presently seeing was really great for me, she didn't rush me, she was so kind and didn't mind sending me to see someone else...the problem was that when I left her office-she completely forgot about me. I have been waiting for 5 months for her to set up a refferal to a sleep clinic.
            I really don't want to switch Dr's again. I will see this 'new' Dr on Friday and maybe get a refferal(a few) out of her. I don't know if she will do that or not as I am not her regular patient.

            Joyce, my cardiologist is kind of like that, he only wants to do the tests HE feels are necessary-which has only been an echo. I wanted to have a stress test done but he didn't think it was necessary.

            How often do you all see your cardiologist-assuming no problems pop up in between. I only see mine once yearly.

            Well I am off to bed-again. Night 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.

            Comment


            • #7
              Re: Dr problems....Vent...MHI

              Pam-This time was almost a year. He has me scheduled to see him during echo on the 5th and again in three months since some of my symptoms have started to come back.
              Burton when I asked him about specialist in this area his reply was that he knew more about HCM than almost anyone else around here. Two separate doctors have told me he is the best for HCM in Knoxville. So I would like to keep him if at all possible. Maybe he can be educated on the lastest up to date info on HCM, maybe not. But I feel that in my on small way if I can get him to listen maybe the path will be a little easier for the next patient he get with HCM. I'm going to give him the brochure that came with my annual HCM membership and ask him to just have a look. He can hook up with some of the specialist on the professional board and probably receive a treasure trove of info.(Wish I could take a peep) It will be another matter entirely if he hasn't checked this site out by the time I see him again. Just want to try tho educated this one if at all possible.
              Lisa,the 19th? I meant the 15th.
              Everyone take care,
              Joyce
              \"We are not human beings having a spiritual experience. We are spiritual beings having a human experience.\"
              Pierre Teilhard de Chardin

              Comment


              • #8
                Re: Dr problems....Vent...MHI

                Hi, Pam,

                I'm so sorry to read of your ongoing Dr. frustration....sadly, it's all too common. We live about two and a half hours from Toronto General, where Dr. Wigle is. If you would like to stay in Province and have OHIP cover your visit, perhaps we can help by providing you a closer (although still not next door) place to stay.

                Abby

                Comment


                • #9
                  Re: Dr problems....Vent...MHI

                  Hi Pam, Dr Wigle is my HCM doc and people come from all over Canada to see him.
                  Unfortunately you still have to have a referal to see him, so you cannot get away from that.
                  I see him about once a year, although I am late this year.
                  Once he receives my doctors referal, it usually takes about a month for them to set up a series of tests and once done you see him the same day.
                  If you went to the US would you have a problem with your insurance??
                  You live in God's country and I've wanted to visit for many years, but I guess it has it's challenges as well
                  Good luck on any decision you make.
                  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


                  • #10
                    Re: Dr problems....Vent...MHI

                    Hi Pam , This is the other Pam. Sorry you are having so many bumps in your road. I can comment a little on the Benadryl . For me and one of my daughters it actually makes us a little reved up or high; sort of the opposite intended effect. When she was quite a little one at 7 her pedi ordered me to give it to her for chicken pox ; scratching and such . She became very and increasingly psychotic as I repeated the dosing. I had to take her to a psychologist as she was lying awake at night contemplating murdering us with a kitchen knife. The poor thing was tortured and I was devastated. I did not realize nor did her pedi that it was the Benadryl because she gradually cleared as the pox went away and of course I had by then stopped the the Benadryl . When she had a surge of her allergies the following fall and the pedi ordered Benadryl, with 1 dose she was again psychotic. Bingo she now tells this horrifying story to friends for laughs but still is traumatized by the whole event. For me it was more suttle I was not able to be sure I was driving the correct route to work when it hit me and I had terrible rumination of thought and deed. I had to keep repeating tasks as they were not done well enough and I did them. ( that was my peception). I had taken Benadryl Pm as given to me by a friend who said it was just extra strength Tylenol . What a dummy I was and a nurse I am too! I was acting inebriated as well. I learned as well working with adolescents and elderly people that often it is poorly metabolized and these variations of effects can and do happen all too often. It was a commonly prescribed med in the old days before becoming OTC. We used it for sleep especially in Psych hospitals and found shortly into the dosing that these kids and some individuals would go bonkers and end up in 4 point restraints. When I was charge on the adolescent unit I quickly brought my personal and professional experiences to new docs who wanted to use it. If they listened an alternate was used if not too often this scenario would play out. One very knowledgeable psychiatrist told me that they had found this particular reaction and reversal of effect to occur in individuals with OCD, ADHD and certainly in manic patients. Well my daughter and I truly are OCD She has it worse and also has ADHD. It is one of those OTC's we avoid. For most I believe it can be very adequate but be forwarned of it's nature is all I reccommend. Best Wishes to you . What is your middle name? Mine is Jean. The other 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


                    • #11
                      Re: Dr problems....Vent...MHI

                      Hi Guys and Gals,
                      Annual visits? Hmm, what a concept.

                      I got my current cardiologist in January when I was hospitalized with an HOCM attack, and for that month I saw him weekly, getting my drugs adjusted properly. Now I see him every three months, but he is also treating my hyperlipidemia and water problems. Of course any time I feel the need I can just pick up the phone and get an appointment for a few days away. Anything more pressing takes me to the ER.

                      Also on a three month rotation are my endocrinologist, my nephrologist, and my primary care doc. The others are there when I need them, such as the ophthalmologist (annual), dermatologist (as needed) and gastroenterologist (also as needed). My pulmonologist has closed up shop and fled the scene, but with the HCM diagnoses we know why the SOB, so I don’t need him any longer.

                      Then there is my wife’s set of doctors. Ah yes, retirement is such a fun time.
                      Burt

                      Comment


                      • #12
                        Re: Dr problems....Vent...MHI

                        Burt-Sorry to read you have so many physical problems but am happy for you that you have access to what sounds like some really good health care. Take care of yourself. Joyce
                        \"We are not human beings having a spiritual experience. We are spiritual beings having a human experience.\"
                        Pierre Teilhard de Chardin

                        Comment


                        • #13
                          Re: Dr problems....Vent...MHI

                          Hi Joyce,
                          Well, actually three of my doctors are keepers. My wife has one and probably a second, but it took awhile to find them. We are in an HMO and the choice of physicians is somewhat limited, and in-hospital care is usually not provided by your regular doctors. And the in-hospital PCP doctors get bonuses based on how fast they get you out of the hospital. Still, with all that, if you are pro-active you can still get exceptionally good care.

                          Ok, we’ve got all these conditions, but we’re both still here to talk about it. Not too many years ago I’d be dead by now and my wife would be in some kind of managed care facility or institution. I rag on about incompetent doctors quite a bit, but the truth is medicine has come a long, long way, and we’re glad we have them around to help.

                          Medicine is growing at a rapid rate, and a lot of information is obtained by trial and error. I wish you all just the teeniest, tiniest bumps in the road.
                          Burt

                          Comment


                          • #14
                            Re: Dr problems....Vent...MHI

                            Abby, thank you for your kindness, it really means a lot. I am torn between going to Toronto or MHI. I have never been on an airplane(except for when I was rushed to Winnipeg when i delivered my last baby). I certainly don't have a preference as to where to go, I was merely thinking of travelling time. Because of my location, patients are often sent to the U.S for treatment so I 'think' that OHIP would cover the cost.

                            I think I will go without the Benadryl tonight and maybe try Gravol, I so need a good nights sleep.

                            As far as Dr's go, I have had a miserable time up until the past couple of years with Dr's. Mainly because I was going in to the ER with complaints common with panic attacks and they never found anything wrong. But I knew something wasn't right. After my diagnosis Dr's began taking me more serious, like Burt said, this really is just a small bump in the road. EVENTUALLY things have to get better...right?

                            Pam, my middle name is Dawn...(Pamela Dawn).

                            Well I am off to fight for a refferal for my 12 yr old(his Dr has already told me that he doesn't need an echo EVERY year...I am planning on going in to this app with a whole bunch of info for him to read. Some Dr's just refuse to admit they don't know everything.
                            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.

                            Comment


                            • #15
                              Re: Dr problems....Vent...MHI

                              Well that appointment took a whole 15min. I can't complain, he(the Dr) was very good today and didn't put up a fuss.
                              I REALLY do not feel comfortable knowing more than the Dr. He was asking me all kinds of questions about HCM(some I couldn't answer).

                              He set up both the refferals for my kids the last time they were checked, yet he said he couldn't remember WHY the refferal was made.

                              You would think he would remember seeing 2 young kids with the possibility of inheriting a rare heart condition.
                              Ah well, I have milked this 'vent' entirely too long...

                              Hope everyone is having a good day...

                              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

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