If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you


No announcement yet.

My Own Update


About the Author


BlueDevil Find out more about BlueDevil
  • Filter
  • Time
  • Show
Clear All
new posts

  • My Own Update

    Gee, it looks like things are moving along for people around here.

    While I am nowhere near where Rob and Mary are on this road, things are starting to happen for me as well.

    After a frustrating appointment with a doctor at the MHI (who wasn't on the transplant team) at the beginning of August, I was asked to come in to see a doctor and a nurse from the transplant team. The appointment was yesterday and finally things are coming into better focus for me.

    At this point in time, my situation does not necessitate immediate action to get on the waiting list. However, because of the unpredictable nature of my own health issues, both Maron and this transplant doctor (whose name is Olivari; I really like her thus far) agree that the evaluation phase should proceed so that if/when the time comes, all the pre-work will have been done.

    I'm under orders to lose weight as well as get my big butt to the dentist. I have an immense fear of going to the dentist, it's more or less a phobia, so this is going to be a major undertaking because I know I will need a lot of dental work.

    The discussion with the nurse was enlightening and frightening at the same time. I'm well aware of the permanent aftercare required for transplant patients, but I don't think that fired with me until she talked about them. She also pointed out that I really do have a choice in terms of having the transplant or not. And that gives me a lot to think about. As things stand now, I am not so sure of the worth of having it. Trading one set of problems for another for what I think is a relatively short time...I don't know. There's a lot to think about and consider.

    On other news, I'm going to have the ICD/biventricular pacemaker implanted soon after my trip to CA. I haven't scheduled it yet, but it will be sometime in October, I imagine.

    -- T.
    Life is a banquet...and I got botulism! -- Me

    If time flies when you're having fun, will I age faster at Disneyland? -- Joel Perry

  • #2
    Never fear my dentist phobic friends help is on the way!! OK I am being a little over dramatic here but I too am not thrilled with the dentist (that endocarditis thing did it for me!) HOWEVER I know of a great new product that can take away the FEAR of dentists.
    How do I know about this - my husband is the sales manager of the company that created this wonderful device!!!
    Learn more about the wand here! http://www.milesci.com/patients/index.phtml

    Milestone has also been a supporter of the HCMA - so we like them very much!


    Think about your OPTIONS - the great news is we have OPTIONS in life! Regardless of your choice we are here for you!!

    Lot of love,
    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)


    • #3
      Tim, yes dental work is very important before transplant. Yes, you have options. It is a big decision transplant or not. Having seen life on both sides. I would do it all over again. Yes, I take a lot of medicine. Yes, there are side effects mainly at first. Could I walk 2 miles pre transplant - no. Would I still be here to enjoy my wonderful life. No. For me there was no option. I took the risk. I am so glad I did. Keep us posted.

      Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
      ICD&Pacemaker 1996
      Heart transplant March 19, 2004 @ Mayo Rochester
      Mom of Kaye.


      • #4
        Hey Tim!

        Trading one set of problems for another for what I think is a relatively short time...
        You need to listen to some more of the stories of 20-25+ year transplant survivors! And those are people who survived transplants back when the immuno-suppressant therapies were not as evolved as they are today. A transplant is no longer a death sentence.

        Sure, you'll be taking medicine everyday, but so what? You're already going to be taking some pills everyday for the rest of your life, these will just be different ones!

        GO TO SOME SUPPORT GROUP MEETINGS!!!! (Yes, I'm yelling.)

        I understand about the dentist--fortunately I steeled myself to doing it an put time into receiving much needed dental care before I really started having heart trouble. Do what it takes to catch up and then go into maintenance mode on those teeth--it's easier that way!

        Pulling for you on the left coast.

        --Living life on the edge .. of a continent!
        Charter member: Tinman Club


        • #5



          • #6
            The bit about dentistry is related to organ rejection and suppression of the immune system. Following a transplant the organ recipient's immune system, which normally fights off infections, must be suppressed using drugs to keep the recipient's body from attacking/rejecting the donated organ. As I understand it, the donated organ will never be completely accepted by the recipient's body but over time the amount of immuno suppressant drugs can be reduced, but never completely eliminated.

            Following a transplant, and particularly immediately afterward, a cancer or active infection can be deadly to the organ recipient. An abcessed tooth (with infection under the gum) could very well be deadly. Good dental health prior to transplant is important to avoid a potential infection. Transplant guidelines call for the patient to obtain "dental clearance" along with other medical clearances prior to the patient being put on the waiting list for an organ.

            Midge and other post-transplant folks can probably add a little more info--I've only been listed since July 7th.

            Hope this answers the question. If you want further info please feel free to ask!

            --Living life on the edge .. of a continent!
            Charter member: Tinman Club


            • #7
              Also wen it comes to teeth, the mouth has the most bacteria in it so they try to fix everything and then teach you how to maintain them. Jut think years ago they would extract all your teeth before transplants I know two people who had to have that done. AS for everything else transplant has been great for me I don't consider it another problem. & years that I would not have had to me is well worth it. Also I plan many more something I never did before transplant.

              Karen Cicconetti
              Heart Transplant 1998
              Don\'t take your organs to heaven
              Heaven knows we need them here


              • #8
                Re: Dentist

                Originally posted by baer
                PLEASE TRY AND EXPLAIN WHY IT SO IMPORTANT TO HAVE DENTIST WORK DONE BEFORE TRANSPLANT ( yes dental work is very important before transplant.TR) I NEED EDUCATED
                In addition to the transplant-specific issues mentioned above, please bear in mind also that every HCM'er should be vigilant about dental care. Bacteria from an infected tooth can easily enter the bloodstream, become lodged in the heart, and result in a case of endocarditis. You can die from that if not caught early and treated properly. This applies to all of us, whether we're obstructed or not, or waiting for transplant.

                When I had my myectomy last year, they found some infection around one tooth and since there was no time for a root canal, they simply yanked the thing out.

                Sorry to be a little off-topic, but anyone reading this thread should be aware that good dental hygiene applies to all of us, transplant ot not.

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


                • #9
                  Re: Dentist

                  Originally posted by mtlieb
                  but anyone reading this thread should be aware that good dental hygiene applies to all of us, transplant ot not.
                  I know, I know, I know...believe me, I know.

                  I think the word "phobia" is thrown around too casually in our society, but in my case it absolutely fits. I know my fears are irrational. That's why it's called a phobia.

                  The number of times I've been to the dentist I can count on one hand. And I'm 37 years old.

                  I trace this back to my very first dental visit at around age 5. My folks took us kids to a friend of theirs who had an absolutely bad chairside manner and didn't know how to handle kids. It was a mandatory pre-kindergarten visit, and it was decided that I needed four of my bottom row baby teeth pulled. It still sticks in my mind as one of the most frightening things I've ever experienced. My one saving grace is that I had kicked out in pain and fear...and connected with the dentist's gonads. That was the only time I ever saw that dentist as a patient. My parents socialized with him often, and anytime he was near, I would run and hide.

                  I can't explain it, really. I have a recurring nightmare where my teeth fall out one by one. I think part of what freaks me out is the fact that the dental tools are so close to the brain. Still irrational, I know.

                  I'm also terrified that since it's been this long my teeth and dental health are so far gone that I will need major, major work. Yes, I know, the longer I put it off, the worse it will be. It's that irrationality factor. Filling cavities, I can live with. But I'm afraid I'll need multiple root canals. I also have two blank spots where there were no permanent teeth to replace the baby teeth that came out.

                  Part of the reason for my lack of dental care also has to do with my folks. When my mom died in June, a lot of family confessions surfaced, one of which was my dad's propensity for putting himself first before us kids (his words, not mine). So, things like dental visits and doctor visits were put on the back burner for luxuries and things he wanted.

                  So, that's my story.
                  Life is a banquet...and I got botulism! -- Me

                  If time flies when you're having fun, will I age faster at Disneyland? -- Joel Perry


                  • #10
                    What about going to a dentist that will "put you out" while he/she does all there work. I don't have any experience with this, as I have been awake on all my visits; However, I have heard of people who are asleep for the whole procedure.
                    Pace Bene,

                    Diagnosed with HOCM 2003, ICD Implant on 3-3-05, Extended Myectomy with a Mitral Valve Plictation at St. Luke's in NY on 9-27-05


                    • #11
                      You know, that's a good point. My friend has an autistic child and he has to be put totally to sleep just to clean his teeth. That might be an option?


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


                      • #12
                        a tough decison

                        First, I totally feel for you with the dentist...I HATE going to the dentist. For me its the scariest thing...and I had a heart transplant!!! But, it is an important doctor to see, and if you DO go forward with the transplant you cant have potential infections in your mouth. Post transplant alot of the focus is on not getting infections, one from your mouth could cause trouble.
                        As for this big decision....its a big one, and I hope you take alot of time to think about it. Either decison we are hear for you!!!!!!!!!!
                        I love the suggestion about talking to people who are 20- 30 years out from a transplant (who are taking "prehistoric" drugs).
                        I am 25, i got my heart nearly a year ago, and they said this heart will last 25-30 years easy....thats pretty good. But please talk to people who have had a transplant, and decide then whether or not it'll work for you.
                        For me, it really wasnt an option, I was a time-bomb, but thats me. I wasnt able to walk very far, or have fun filled days because i was always tired. I would fall into heart failure when ever i got sick or was stressed..and at the end it i couldnt breath well if i stayed up to late studying. Yesterday I ran a mile on the beach! I run a mile in 8 min, prior to my heart transplant i never even WALKED a mile. For me the trade off is awesome...pills twice a day, and some other inconviences...for the life i always dreamt for. Please send me a personal message or email me at [email protected] (subject heart transplant), if you wish, to talk about some of the challenges of post transplant life... Ill be honest and answer any questions.


                        ps. that offer goes out to anyone, please feel free to contact me
                        Proud Heart Transplant Recipient - November 6, 2004.


                        • #13
                          Hi Tim,

                          I am glad to hear you have some options and that you are getting more information that may help you in the future.

                          I know of a lady (on another message board) who had a heart transplant 6 years ago and she is going to college and working part time. She is doing very well, she is 28 years old.

                          As far as the dentist goes, I personally do not have any fears. I don't even have my gums numbed when I have work done. For some reason, it does not bother me. BUT -- try to get me on an airplane! -- hoohoo!.. that ain't easy. I guess we all have something we don't like to do.

                          I wish you the best with any decisions you may make in the future.

                          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.


                          • #14
                            hi everyone,this is a great thread,so many topics of interest.tim I had a very similiar dental experience when I was about 7 yrs old.they took out seven baby teeth in one shot,and it was the (hurry up and lets get this over with types from the union).no mercy.all this to make way for braces that were fitted and removed to early,before more adult teeth came in.results?now instead of spacing I have overcrowding.I can not think of anything I dislike more than going to the dentist except maybe hcm.the best thing about hcm is that I have the hcma as a support system.other than that I would trade up for a healthy body in a flash.I have had mostly bad experiences with dentists.the worst of all is the sound of the dental drill as it bores into a tooth,and all that bone dust and water,suction etc.It is nails on a chalkboard x's 10!!Inspite of all that I am forced to go.the alternatives are worse.about 10yrs ago I had put off going,when I knew I had a cavity in one of my molars.I would eat favoring one side of my mouth,and when it got bad I would invest in some anbesol and wait for it to go away.well you know what happened it got so bad one night that I was praying for the dentist I was ready to rig a string and try the slam the door method of removal.instead of a filling you guessed it I needed the dreaded root canal.all of which could have been avoided if I had been responsible in the first place.I am due to go for a cleaning and a checkup,and Im 3mos late.I cant help but procrastinate,until I can again muster up the courage.I also am on my best behavior whendealing with the dentist and his staff.(you know the usual-have you lost weight,Ilove what you did with your hair,and the old standby you look younger everytime I come here).you get my drift.wouldnt want them to be anything but extra careful with me.one more note we are definitely not alone in our fears.I have a friend I grew up with,he is a hardcore guy.he's done a few years in prison,has tattoos all over him and been in numerous fights.when we spoke about his trip to the dentist he confided in me that he opted for the gas when he needed an infected tooth pulled.all that being said I know were your coming from,but you still gotta go.take care mike ps you can do it!!!!
                            one last thing alibear I think its awesome how well you are doing.I was thinking how you ran a mile on the beach thats the best.25-30yrs is a great number.please keep us updated on all your accomplishments its a source of inspiration take care mike
                            One day at a time.