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Rheumatic heart


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  • Rheumatic heart


    Does anyone know what is (was) meant by having a rheumatic heart? Not sure on the spelling. I found out my grandmother was diagnosed with this and the symptoms sound very close to HCM, but it was a diagnosis done many many many years ago. Thanks!

    NEMC's (Boston) First Myectomy 7-22-2003

  • #2

    My mother was diagnosed with the same thing in the 1930's. Ended up being IHSS damaging in the late 60's early 70's. There was too much damage to her heart by then to do anything and she had a stroke at age 52 due to an embolism. Lived to age 69 before more strokes killed her.

    Rheumatic heart disease was caused by rheumatic fever damaginfg heart valves from what I understand. I wonder hows much hocm was misdiagnosed.


    • #3
      well, I never made any connections to my HCM until this last weekend while visiting my mother. She said her mom had been diagnosed with this Rheumatic heart, but I question just how accurate this is. She then mentioned her grandmother, my great grandmother died suddenly at about 26 years of age, she doesn't know why. Now I am wondering did I find the genetic connection or not. I suspect actually my grandmothers diagnosis of Rheumatic heart was probably in about the late 30's or early 40's when my mother was still very young. My grandmother eventually died of kidney failure but not after having heart problems and a 3 way bypass. Never was she checked for a more accurate diagnosis and a possible connection to HCM.
      NEMC's (Boston) First Myectomy 7-22-2003


      • #4

        Before penicillin. early 1940’s,bacterial infections which we now take for granted, wreaked all kinds of havoc and caused many unnecessary deaths.

        I recently watched an excellent episode on Discovery Channel titled “Miracle Drugs” which detailed the discovery of the first antibiotic. Alexander Fleming actually discovered penicillin in 1928 but didn’t have the funds to continue his research. His early papers, presented properly and found to be completely accurate were ignored for nearly a decade.

        Rheumatic heart disease is mostly unheard of today because of early intervention with antibiotics. Rheumatic fever, when left untreated, can lead to rheumatic heart disease. Rheumatic fever develops from a simple strep throat and the subsequent heart disease causes damage to the valves of the heart. The unfortunate patient that dies from this disease often perishes from congestive heart failure and upon autopsy has an enlarged heart.

        My mother’s sister died in 1934 at the age of 15. The story handed down through surviving family members always mentioned her’s as a sudden death from rheumatic fever. It took a lot of digging but I did finally manage to get a copy of the death certificate from the Commonwealth of Pennsylvania.

        She actually died of an inflammation of the brain (Encephalitis) caused by scarlet fever, not rheumatic fever. The other relevant feature of her case was that she had been hospitalized for 18 days prior to her death – not exactly a sudden death.

        A favorite quote of mine these days – “ . . . The hasty stroke oft goes astray.”

        Don’t stop digging. Your grandmother’s disease may very well be relevant to your own situation, but the facts as handed down through the generations may not be completely acurate.
        • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
        • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
        • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
        • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
        • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
        • 2011: Brigham & Women’s - Medtronic ICD implant


        • #5
          I suspect that if we could all look back at our ancestors we would find that many of them died of "rheumatic hearts" and others of things even more unlikely. Two of my aunts were diagnosed that way from early childhood. Did they really have that or HCM? Who knows, maybe they had both. Interestingly, both of them died somewhat unexpectedly, even though their deaths had been predicted as imminent by doctors for years.

          Also, scarlet fever is a less serious immune response to the strep bacterium than is rheumatic fever, but both are in fact immune system responses to the same disease. So, your family was correct and the death certificate less correct about your aunt's death. Probably from their perspective, the death from rheumatic fever was very sudden given that they thought she had scarlet fever, which was known, even then, to be the less severe form, which rarely caused death, as I understand it.

          Personally, I find this kind of medical sleuth work to be absolutely fascinating, and would be tempted to spend much time on it, if I did not have lots of other fascinating things to do such as working here in China. My interest was arroused when I was about 21 and wandered through a church graveyard on the Mendham-Bernardsville Road in New Jersey. I found a huge grave which announced that the occupant had died vomiting black bile and gave further details as to the length of time and so forth that I have now forgotten. What DID that person actually die of???



          • #6
            When I was in my senior year of high school, I was diagnosed with rheumatic fever. I took penicillin for 3 yrs. When I was sent to NIH for IHSS, they somehow discovered that I never had rheumatic fever. Was it IHSS instead of rhematic fever???

            There are some mysteries that cannot be solved.


            • #7
              Doug, I was told I must have had rheumatic fever a few times before my HCM was diagnosed over 30 years ago.
              I believe it was the favorite diagnosis for the uninformed and I would bet your Grandmother never had it either.
              When I go to the dentist and they review my medical history, they still show I had rheumatic fever in my file, I tell them I never had it, but they seem to like it in there so it's always left there.
              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.


              • #8
                Wow, Rhoda. That's some detailed headstone!


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


                • #9

                  What DID that person actually die of???
                  Question was posed like a riddle, so I’ll give it a go.

                  Yellow fever would be my guess! Philadelphia actually experienced a Yellow Fever plague in 1793.Details such as those you describe aren’t found on modern day tomb stones and Mendham, NJ is about 80 miles from Philly - you may have discovered the grave of one of it’s victims.

                  Returning to Doug’s initial question. I am now of the opinion that for those of us diagnosed with HCM without obvious genetic evidence (disease verified in a sibling, a parent or offspring) looking to an earlier generation for this proof is going to be frustrating and for the most part useless.

                  I agree that it is a fascinating aspect of researching one’s geneaology, and I am trying to update family records myself, but records from the ‘30’s and ‘40’s can’t possibly indicate HCM as a disease, so all we can do is speculate.
                  • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
                  • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
                  • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
                  • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
                  • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
                  • 2011: Brigham & Women’s - Medtronic ICD implant


                  • #10
                    My grandfather (died 1953 at 43) was also told that he had a "Rheumatic Heart". I would say when speaking to those who contact the HCMA, this is one of the more common 'conditions' people note in extended family histories.

                    Was it really Rheumatic heart, was it HCM - was the family free of HCM until this person and did the Rheumatic fever caused a genetic mutation in off spring??? There are many good questions to be asked and answered.

                    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)


                    • #11
                      You folks reminded me of a tombstone I ran across many years ago, and it has stuck with me ever since. It was accurate, concise and to the point –

                      Here he lies in deep repose
                      What he died from, no one knows

                      It was in a graveyard in upper New England – which boasted quite a number of concise stones. Another one that was a favorite of the time –

                      I once was what you are now,
                      You will be what I am now.

                      While we are at it, here’s one from Tombstone Arizona –

                      Here lies the body
                      Of a man called Joe
                      His mouth was fast –
                      His gun was slow.

                      Here’s one I wouldn’t mind having –

                      He lived so long he reached his dotage
                      Then up and died - at a ripe old age.

                      It’s winter, it’s winter, but you will find,
                      When winter comes, spring’s not far behind.
                      While it’s here please enjoy the snow,
                      But remember the flowers are ready to grow.

                      So here I write with pluck and luck,
                      I just can’t stop – my needle’s stuck.


                      • #12
                        Agreed- Good questions to be asked, but how can they ever be answered? My point is that we can speculate with this kind of evidence but it is not good practice to include it in any category that should be reserved for facts.

                        HCM for many of us is very difficult to diagnose. When there have been no sudden deaths – autopsies or cases otherwise scientifically confirmed within a family group, the only facts that matter are in the patient’s medical records, not his family history.

                        My grandfather died suddenly in 1944 at the age of 51. A healthy man collapsed from a heart attack? His death certificate indicates that he was stricken at 8AM and died in the hospital 7 hours later at 3PM. Cause of death was “coronary thrombosis with myocardial infarction, posterior type.” Listed under other conditions was “acute congestive heart failure.”

                        We can speculate about this event until the cows come home, but there is no fact listed here that is going to confirm a diagnosis of HCM in me.

                        I’m not trying to cause uproar here, but I think some information belongs in the “interesting sidebar category” and should not be included in the category that affects patient diagnosis or treatment.
                        • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
                        • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
                        • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
                        • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
                        • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
                        • 2011: Brigham & Women’s - Medtronic ICD implant


                        • #13
                          Actually Boz,

                          Family history does serve a bit of purpose. It is one of the risk factors for SCD. If a family member has died of SCD related to HCM that does serve as an indicator that it could happen again.

                          Mary S.


                          • #14
                            My mom had rheumatic fever as a child She remembers being sick(she was 13) so I am pretty certain she did indeed have it. She has been tested twice(echo) and so far is HCM free. However she has nearly all the same symptoms as I, including an EKG that indicates a previous heart attack(which has never happened). There is no hypertrophy as of yet.

                            How similar are rheumatic heart disease and HCM and their effects on the heart? I will have to remember to ask my Dr next visit.

                            Since I am the only one diagnosed with HCM in a LARGE family I am curious if rheumatic fever could be gene altering. The future of HCM will be interesting for sure.

                            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.


                            • #15
                              I appreciate everyones input to the topic here. I would like to here more from other members with HCM who like me have no known genetic link and only found this as a possible misdiagnosis. True, there is no way to go back and do an autopsy to determine for certain, but the link seems to be a valid one for at least speculation to a possible link.

                              I also like the possible theory posed by Lisa that perhaps this is a link to the time the genetic mutation may have emerged. Although, in my case, my grandmother had the 'rheumatic heart' and her mother is the one who died suddenly of unknown causes at 25ish. Only known fact, she died of a heart failure of some kind.

                              Abbygirl: the one thing that perked my interest regarding the similarities are that rheumatic heart is also responsible for enlarging the heart, along with causing valve troubles. So from a macro-point of view, anyone who did an autopsy and examined the heart and observed an enlarged heart may have assumed rheumatic fever, hence rheumatic heart. They probably would not have studied the tissue to determine if the muscle organization was consistent with what we all have, HCM. Today, one would do a more thorough study of an organ that shows anomalies such as this.

                              This all makes me wonder how many times an enlarged heart meant HCM and went misdiagnosed.

                              Short of having an autopsy in hand to read, this for me is exciting in the fact that this is the only possible link I can dig up. I would like to hear more from folks who may have more knowledge on this.

                              Thanks for the input!
                              NEMC's (Boston) First Myectomy 7-22-2003


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