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No referral- venting my frustration


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Abbygirl2 Find out more about Abbygirl2
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  • No referral- venting my frustration

    Hi all, hope you are all doing well.

    I got a call the other day from my cardio nurse telling me that my cardiologist would not give me a referral. He insists that my case is minor and that Dr Maron would not even look at me because I have a low gradient. (Even though he hasn't done an echo in almost 3 yrs now).

    He didn't even know of Dr Wigle in Toronto.

    This is where it gets confusing. While awaiting the call back about the referral I learned that because my cardiologist was out of province he would be unable to refer me anywhere. So when the nurse called I had expected a rejection for this reason. (However she never even mentioned it.)
    Now this brings to light a new problem. Any cardiologist I see will be out of province which means I will NEVER be able to get a referral from them, yet my GP doesn't think he will have a strong enough case without a cardiologist backing him up.

    All I want is to be evaluated by a Dr that is well educated in HCM. I am so sick of this controlling my life.

    Anyway, enough about me....

    Take care all.

    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: No referral- venting my frustration


    Have you tried calling your insurance company, i went through my insurance company and bypassed my doctor, they make the decissions anyway, maybe it will work

    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


    • #3
      Re: No referral- venting my frustration

      I hear you Pam – loud and clear,
      As you recall, Lisa posted that she thought I should see a specialist – and I agreed. I got my insurance high risk caseworker involved in pushing the Authorization Request through the red tape.

      While this was going on, I had another appointment with my current cardiologist. Ho keeps referring to HOCM as ho-cum, and I now believe he thinks to have HCM you MUST be obstructed. I have occasional bouts of HOCM, but basically I am not obstructed. He said to me, “I checked your records and frankly I see no definitive proof that you have ho-cum. You might have something else that looks like ho-cum.” For the water in my legs (but really through my body) he told me not to take the second diuretic that was prescribed in the hospital (which I never filled) because of my problems with my kidneys. Instead he told me to cut my verapamil from 360 to 240 mg /day, and if my systolic pressure goes above the 120 – 140 range to start taking 0.1 mg of Clonidine twice a day. Again he never addressed my SOB, tight chest, heart pains, dizzy spells, headaches and frequent exhaustion. (Maybe he has been talking to Mary’s doc and thinks my symptoms are psychosomatic also. – You think?)

      I talked to my caseworker Friday morning and she said the authorization request for the specialist in California was ‘in the works.’ She also said that they might change the referral to the Hypertrophic Cardiomyopathy department at UCLA, as they have referred people there before. We then talked about the doctor’s on staff there for a while.

      I was out in the afternoon, and when I got home around six (all offices closed for the week-end) I had a message from my PCP that the authorization request was ‘denied.’ I faxed a letter to my caseworker with a copy to my PCP, telling her of the denial, and explaining the problem this causes. Basically, to stop unscrupulous providers from charging more then Medicare allows (including Medicare + choice facilities), there are laws that if you have Medicare coverage you can not pay for services out-of-pocket – other then authorized co-payments or non-covered services.

      I then inquired about bouncing in and out of the plan, going on straight Medicare for the months in which I see the HCM specialist. There are only three reasons I can be denied the plan coverage – and none apply to me, as long as I stay out of end-stage renal failure.

      Come Monday – if my caseworker gets the fax delivered on time – I expect to hear from her. The only problem is that I have to bring the car in for repairs and pick up a rental in the morning, and then take Shirley to a doctor’s appointment in the afternoon. I also want to start checking into the Medicare fill-in plans, as that might be the way to go. I just can’t abide not having access to a real specialist when I feel I need one.

      I don’t know about you Pam, but I’m going to bed where I plan on screaming for an hour or so. I’ll shut the door, so you shouldn’t have to listen.


      • #4
        Re: No referral- venting my frustration


        Hang in there and keep fighting for that referral.

        I'm concerned about your cardio's take on all this. There is no such thing as a 'minor' case of HCM. It's a given that the severity of our symptoms can vary quite a bit individually... but nonetheless we all have HCM, and we all need to be in the care of someone who knows what the heck they are doing. Your cardio clearly does not fit this description.

        Even if your gradient is in fact negligible (which you don't even know at this point since your last echo was three years ago)... does your cardio think that only folks with obstruction warrant specialty care? Following that line of thinking, then only 25% of the HCM population should currently be seeing a specialist. I can assure you that Dr. Maron would disagree with your doctor's rationale. In many ways non-obstructed HCM'ers have it a lot tougher than the rest of us, because there are fewer treatment options available to them, and effective long-term care can be much more difficult to manage.

        I don't have a problem with doctors who can admit they are on unfamiliar ground with HCM... we can't expect all of them to be experts. What i do have a problem with however, is a cardiologist who clearly doesn't know what he is talking about, but for reasons of ego or money (or laziness), can't be bothered to admit that he is unable to treat you properly and make a freaking referral.

        (I'm sorry this post is getting longer than i intended... but your cardiologist is getting me a bit riled up here. Grrrrrr.)

        The cardiologist in Montana who made my initial diagnosis came right out and told me: 'Look Jim, i can't treat you for this, i'm sorry. I don't have a lot of expertise with HCM, but here is a list of centers in the U.S. that i think you should look into for a consultation.' At the time of course, i didn't know a thing about HCM, i'd never even heard of the HCMA, and quite frankly i was a bit preturbed that this jerk was passing me off to somebody else. But looking back now, i realize that he did a tremendous service for me and i've gained a lot of respect for the man. I have since that time written and thanked him for ultimately getting me the best care possible.

        When i went to Boston to see Dr. Maron, i didn't have any insurance at the time... heck, i didn't even have a job. I ended up borrowing money from my family and paying cash for the visit. Granted, it's not the optimal way to go and i'll be paying off that loan for some time believe me. But even if you only ever get to see the folks there once... you'll walk away with highly accurate testing, a formal diagnosis and treatment plan from an expert, and an excellent starting point from which to work with your canadian doctors.

        Take care, and good luck to you!

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


        • #5
          Re: No referral- venting my frustration

          Have you called Dr. Wigles office dirrectly? If not I would suggest you give that a try. If you need any help let me know I would be happy to place a call for you.

          Keep fighting for that referal.

          To all,
          This is NOT the answer that many want to hear however it is truth - Insurance many not alway cover all of the things we hope/think it should. Step one is to KNOW your coverage -make sure you are in a policy that fits YOUR needs - in Canada this is a bit different of a situation.

          There are times when we must look clearly at our choices as to where and how we spend our money. Many people think nothing of spending $2,000 for a vacation - yet the thought of paying this for health care is out of the question for many. People spend lots of money on redecorating their home, fancy cars and many other things. I would suggest that an INVESTMENT in YOURSELF is the best way to spend your hard earned money. Further most hospitals will take payments over time to take care of the bill.

          I know that money is not always available - but with planning most people can find there way to quality care for assessment of their HCM. It may cost money - but this is your life we are talking about.

          RMEMBER - your insurance company does not make the final call - YOU DO!

          Best to all,
          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)


          • #6
            Re: No referral- venting my frustration

            Thanks all for your concern.
            I knew when I asked for the referral to Dr Maron that it would probably be out of pocket-I was alright with that. But the money isn't really the issue, I still need to get a referral. Lisa I have not called Dr. Wigle's office yet because I prefer to go to Minneapolis. I have been so sick for 9 months, and don't really feel I could make a 30hr road trip to Toronto...and I have never flown before so don't feel this would be the ideal 'first' time-I am stressed enough as it is.
            Dr. Maron is 5 hrs away, I already know I can manage that long of trip(my current cardio is 4 hrs).

            Burt I really hope you can get to a specialist-it is so important to see someone who understands all the 'little' things as well as the obvious.

            Jim, I hope I didn't ruin your day- You have certainly had your share of bumps, some days I just want to bang my head against the brick wall thats blocking my path. How do you hold it all together??
            By the way, I am obstructed but I don't know how(or if) that played into his decision.

            I am so sick of hearing 'minor' or 'mild', meanwhile, I can barely make it up my stairs, I am SOB almost constantly, and my heart refuses to beat properly for more than a 30 seconds at a time. I don't FEEL mildly sick.

            My sister thinks I need a shrink, my father thinks I need fresh air, and my dear husband refuses(at this point) to put out any money to see a specialist. Oh somedays I want to move to a secluded island...

            Well, I have to flip my pancakes
            Hope everone is having a great day.

            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.


            • #7
              Re: No referral- venting my frustration

              Pam & Lisa,
              Don’t worry ladies; I absolutely will get to that HCM specialist. The only question is what insurance coverage I will have at that time.

              With Shirley and I both taking loads of expensive medications and seeing a crowd of specialists, and me popping in and out of the hospital like a yo-yo, insurance coverage is a major issue. We both have Medicare plus Choice plans now (HMO’s) which means the insurance company dictates which doctors we can or can not see, and with the laws protecting Medicare participants, we can not see a specialist or someone out of the plan without their prior authorization.

              At the moment I am looking into two possibilities. The first would be to switch to ‘Medicare Only’ for the months that I see the specialist and rejoining the insurance plan for the other months, giving me the drug, testing and hospital protection needed – most of the time. (Under straight Medicare I choose my doctors.) The second option I’m looking at would be to switch to Medicare completely, and buy a ‘fill-in’ policy to cover the items and drugs Medicare does not cover.

              On the one hand I have a significant exposure during the ‘Medicare Only’ periods, if I were hospitalized or needed expensive testing, as there would be large co-payments involved. On the other hand I have to find out what a ‘fill-in’ plan would cover, and what the additional monthly charges would be.

              To give an example of what I’m referring to, I looked into a PPO where I could choose my doctors, (but they only had poor drug coverage.) Also, I would be responsible for 30% of the Medicare allowed charges. In 2003 I was hospitalized seven times and the bills ran from 24 to 96 thousand dollars each. Thirty percent of that would have probably been in excess of $200,000 – in one year. (Somewhat different then the two grand one might spend on a vacation.)

              In any case, I’m working on it. To quote an old Indian saying –

              Storms may come, and storms may go,
              But the swallow in flight knows the way of the wind.

              I’ve often wondered what the heck that meant, and what tribe that old Indian was from.


              • #8
                Re: No referral- venting my frustration

                Originally posted by Abbygirl2
                ... some days I just want to bang my head against the brick wall thats blocking my path. How do you hold it all together??
                It's really quite easy, Pam. I DON'T hold it all together. In fact, i've allowed myself to become a stark raving lunatic... WHICH by the way, if you really let go of your sanity and allow yourself to enjoy the experience, can be quite fun at parties. It's what i like to call taking a pleasurable little psychotic break. It's easy, it's fun, and if you do it right, can also come with free healthcare for life!

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


                • #9
                  Re: No referral- venting my frustration

                  A side note for Burt:

                  A lot of doctors will refer to HOCM as ho-cum. It's not unusual. He's not being an idiot, unless you aren't obstructed. (Even then he's probably not an idiot.) Then you would be quite right in asking him to use the term HCM, as you aren't under the HOCM list bill.


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


                  • #10
                    Re: No referral- venting my frustration

                    It’s not so much that he refers to HOCM as hokum. I don’t fault him for that. It’s just that he never uses the term HCM. I had two ‘spells’ last December when I was obstructed and hospitalized. The second episode was when I was finally diagnosed and my medications were adjusted – including coming off an ACE inhibitor. The second day there that doctor gave me three different narcotics intravenously before he could slow my heart down to the point where it started moving significant quantities of blood. (I gave the whole crew a workout that day.)

                    Last March I had another minor brush with HOCM, but aside from that I am not obstructed. The first two times I saw this doctor he only talked about hokum – the second time he said there are a lot of good signs in my records – but he never addressed the problems I was having at that moment.

                    This last time he said he had a chance to review my file and he saw no ‘definitive proof’ that I have hokum at all, but something else that looks like hokum. (I have an ‘athletic’ heart, a murmur, SOB, chest tightness, unstable angina, water retention, a cough that won’t quit, bad headaches, an abnormal EKG, I failed the stress tests, and the echo’s and x-rays show an enlarged heart – but not dramatically so. What does he want – a note signed by G-d?) Again he did not address most of my problems, but he did cut my verapamil because of the water retention problems I’m having. My feet look like sausages and my ankles like grapefruit. If I hold my shins, I will leave a depression equal to the thickness of my fingers. I even see it at my watchband.

                    I got a very strong impression from our conversation this last visit that he believes that to have HCM you must be obstructed, - but even if I am mistaken and he is the resident wizard on the subject, if he doesn’t address my problems but only looks in my file and tells me how good I am – what purpose does he serve?

                    I will grant that my other medical problems probably muddy the water quite a bit also, but is it too much to ask to have my symptoms addressed when I see him?

                    I swear Reenie; one of the options I’m considering is pulling up stakes and getting out of this state. I mean, if the state government officials fly the state’s helicopters to California to have their medical needs taken care of, what hope is there for us poor common folk?



                    • #11
                      Re: No referral- venting my frustration

                      Pam, I wish I had an answer for you, but you have so many road blocks.
                      I have been seeing Dr Wigle for over 30 years now, so I'm a little prejudice towards recommending him.
                      Is it because you want to go out of country that your Cardio won't give you the referral??
                      I would take Lisa up on her offer to make a call for you, you never know what might transpire because of it, maybe a call from Dr. Wigle to your Cardio to inform him of the importance of you seeing an HCM specialist whether it be him or Dr. Maron.
                      Maybe you need to bit the bullet and think about the 30 hour trip.
                      You can't just give up, you still have a couple options to explore.
                      Good Luck & Stay Well!
                      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.


                      • #12
                        Re: No referral- venting my frustration

                        Hi Pam ,
                        I think by law you are entitled to a second opinion or maybe this is only in the states. I am not sure but check.

                        What I usually do is remind my doctor that he or she is my partner in my heath care and since they agreed to and entered into this partnership by taking me on they have an obligation within reason to help me seek out additional medical expertise if I am symtomatic and have not been deemed mentally ill . I usually have no problem . Per the hypocratic oath they must " Do no harm ."
                        Give it a try , be firm and assertive . I did this with my original cardiologist ( the @#%*** ) had the gaul to say, " I' m going to make a referral for you to go to Boston because you need to hear that there is nothing wrong with your heart." He knew I was going and I had made my own referral and the insurance company had already told me that he could not stop me and I was entitled to this 2nd opinion.

                        So go for it Pam and good luck to you.

                        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


                        • #13
                          Re: No referral- venting my frustration

                          Pam, good luck. The frustrations are so painful.

                          Burt, I hear ya. I don't know why some docs don't think you can have HCM without the obstruction. Go to CA or somewhere. You will most likely get much better care.


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


                          • #14
                            Re: No referral- venting my frustration

                            Hi Pam,

                            You are in Ontario, the land of free doctors. So am I.

                            Dr Wigle only needs a referral from a GP. I know this as I am booked to see Wigle in October. I got a call from his receptionist, saying that I can not book, only a referral from my GP or regular Cardiologist can.

                            If all else fails, make a trip to see a GP in Toronto.

                            My mother lives in Elliot Lake (Northern Ontario) and she is limited to 1 GP, being a small town. She does not like her GP as he is a druggie doctor, who will right anything on a prescription pad upon request. She comes to Toronto every 6 months for a full physical.

                            If you need her Toronto GP doctors name, send me a PM.

                            Remember, this is Canada and you have OHIP, the rules are very different, and you should not have troubles getting referrals.


                            • #15
                              Re: No referral- venting my frustration

                              Hey all, thanks for you thoughts.

                              Glen, I don't have a preference, I'll see anyone, I gave my cardiologist 2 different names of specialists leaving the choice to him. The only reason I want to go to Minn. is because it is much much closer. There is no way I can make a 30+ hour road trip at this time...I'll have to die here if that is my only option.

                              Paul, An out of province Dr can not issue a referal...thats what it comes down to. Absurd as far as I am concerned, nearly ALL Dr's we see in this area are from Manitoba other than GP's. My son was even born there-they just are not equipt to deal with serious health concerns here. we have to go to the US for CT scans.

                              Other than the 'out-of-province' issue (I can find my way through that red tape easy enough) the problem is getting a Dr to refer me. My old GP said that she didn't know anything about HCM and therefore could not give me a referal, my cardiologist would have to do that. My NEW GP claims there isn't enough 'strength' to my case without the cardiologist to back it up.
                              I am certain I will get through this eventually, and the odds are I'll be going to Toronto- atleast I can see my sister.
                              I see a new cardiologist(in Manitoba of course) in October so I'll be able to get a new opinion with fresh eyes.

                              I'm not sure exactly where Elliot Lake is, but we are more west then north-actually I am not even sure why they call us north-as we are as far south as we can get in Canada-right on the US border. I look out my window and blammo there is the US.

                              Ok, I have jabbered enough...take care all
                              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.