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ginnilea Find out more about ginnilea
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  • maybe some good news?

    Ok, i think we should use this post to state good things happening... I don't think we should downplay those who are suffering in the hospital bed currently but since I feel I began this down time on posts, i think we should share good things happening to us.

    This week I have been feeling better. changed my hair do and getting out more. I have made more plans to keep busy enough to keep me happy... anyone else have anything positive to say??

    My thoughts go out to Burt and Mary, may good karma come your way.

    Ginny
    Heart nurse by day, Heart Patient by night

  • #2
    Re: maybe some good news?

    I enjoyed a day with my daughter at the fair - where her addiction to horses grew yet again! Yesterday I was with the Governor of NJ to sign in a new law that protect the Highlands region of NJ from development - thereby protecting the water for over 4 million NJ residents!

    For those who do not know this NJ is not only what you see from NYC! I live in the country and the area is home to several major water sources. I grew up here and intend to do whatever I must to protect it from becoming overcrowded. It was a great day for NJ - (however they did also pass a law to make it easier to build in other areas of NJ - which hopefully will be rewritten!) Heck I am taking the good new and saving that fight for another day!

    OH and for my birthday I got tickets to see Don Henley on August 31st!! I love Don Henley - In fact I often joke he is the only man on the planet that I would leave Adam for -

    AND>> after 14 yrs of marriage and looking for about 10 years for the perfect set - I finally bought a bedroom set which is set to be delivered on Thrusday!!


    Lets not forget the 10K donation the HCMA recieved on Monday!!!!!!

    All in all it was a great week for me so far!

    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


    • #3
      Re: maybe some good news?

      I saw my Dr. last week. He told me I'm doing great and took all my restrictions away. He cut my meds in 1/2 and told me to back to work on Monday the 16th. He told me that my heart is in better shape than it was 25 yrs ago. I'm still doing my exercises and going to rehab but I'm really fired-up about going to work. Maybe I have a mental problem, I never thought I would want to go to work...

      Tigger1

      septal myectomy & pvi...05-17-04
      " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

      Comment


      • #4
        Re: maybe some good news?

        Our good news is that all in our family is feeling good. I have a physical set for later this month where I'll ask for another echo for my children. Here's hoping all are still clear!

        Reenie
        Reenie

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

        Comment


        • #5
          Re: maybe some good news?

          Ginny

          I LOVE your idea of Good News Posts!
          I try to make a daily habit of thinking of all I have to be grateful for, even when good health isn't among them. The more I think of how GREAT my Life is (my Life really is GREAT!), the better my Life gets! It's all how you look at Life.

          Smile & be Happy Everyone
          RONNIE

          Comment


          • #6
            Re: maybe some good news?

            OK, how about this for good news? Hubby and I are just getting back from a short get-away at the ocean. We had 2 flat tires, one on the way there and one on the way back. The good news is that neither one was on the Chesapeake Bay Bridge and both allowed us just the right amount of time to get fixed before the garages closed! Oh, and the vacation and weather were great. Linda

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            • #7
              Re: maybe some good news?

              Linda where did you Virginia Beach? you know i live in norfolk, maybe one day we will meet

              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


              • #8
                Re: maybe some good news?

                Okay... I'll add mine...

                There are many days that i'm feeling pretty down and out, like today, and find it very difficult to think of anything i could possibly call good news. But while sitting here looking at this thread, and wanting to throttle anyone who dared try to be happy around me today... i just happened to remember that i'm the luckiest man on earth!

                Why, you ask? Because four years ago i had the most painful kidney stone you could possibly imagine. As a result of that little sucker, they did an x-ray that revealed a Stage II tumor of my kidney, and i was able to get it taken care of before it progressed further, which i am told it was quite ready to do. Tumors of the kidney do not cause pain... the kidney stone was a complete coincidence and without it the tumor would not have been discovered. It's also the one and only kidney stone i have ever had. Pretty lucky, huh?

                But wait... there's more. As a result of the kidney stone, which led to the tumor discovery, which led to surgery... i had a pre-op echocardiogram which started a chain of events that eventually revealed that i have HCM. I had no idea until that time, and maybe never would have.

                So when i have a bad day... i'm always grateful to remember that i've been given two second chances at life, and all due to one tiny little kidney stone.

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

                Comment


                • #9
                  Re: maybe some good news?

                  Okay - - you're going to make me look at kidney stones differently now..... I guess I'll have to start appreciating the bad things too... although with the bad news I keep getting told about Keanu, I am having a hard time finding the good. I guess I will have to look harder....

                  Have a good evening to all!!!

                  SheliRenee
                  Mom of Keanu
                  4 years old (will be in March)
                  Dx at 2 days old with Biventricular hypertrophy
                  Dx at 6 weeks with HOCM
                  Dx at 5 months with V-tach
                  Dx at 3 with Noonan Syndrome

                  Comment


                  • #10
                    Re: maybe some good news?

                    Ok my good news: Yesterday I got my 87 year old father to come out of the house with my mother and I and take a ride to a beach. I know this may not sound like much but it is . He prefers these days to remain entombed in the house on the porch watching the television very loudly( usually the low life talk shows with the most dysfunctional people in america on them ) or reading Star Magazine. He daugs my mom who is 76 and young spirited until she is a wreck emotionally. When I invite him out he says he can see all he needs to on television. He does get out and make the rounds on his golf cart. He uses this to check out the neighborhood and his land. His legs do not work very well. So this was phenominal and he and my mom had a good day. I will work on keeping him going in the right direction.

                    For me things seem stable for now , I helped my daughter get a beautiful apartment near school and overlooking the ocean with a family that live upstairs to her. It was as if it was a godsend. Now we are just waiting on the financial package for school.
                    My son is ready to go off to school and calming down , working everyday and thankfully tired enough to stay home more.
                    My other daughter is doing well and making lots of plans for her wedding . She is interviewing for a much better job in the mental health field.
                    I am thankful for only small disasters that come my way these days.

                    I will always be so thankfull for that special phone call to Lisa one day last spring when I thought there was nothing more that could be done for me and the doctors were sorry to tell me, "technology is just not there for you." I had decided that I should at least order and read the book that Lisa and Dr.B. Maron wrote and at that time Lisa's soothing words, after hearing my sorrowfull plight were, "I think it's time for another set of eyes." Little did I realize at that moment that there was hope around the corner. That phone conversation led me to NEMC with Lisa paving the way. The rest is history. I am full of thanks. My days have hope and happiness as a result of Lisa , my HCMA family and all the wonderfull people at NEMC especially Dr. Marty Maron, Jessica, Dr. Rastigar, Celeste, and Dr. Udelson who continue on this journey with me.

                    Whenever I get down , I just think about all these good things and good people.

                    Have a great day .

                    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: maybe some good news?

                      Hey... i have some good news to add to the thread today!

                      1.) I had my semi-annual checkup this morning for my kidney cancer, and all of my tests were negative. Woo hoo! One more year and i'll be at the five year mark, which means i will officially be declared cancer-free and good for life. There will be some partying going on after that appointment, my friends. Felix and Reenie... oh yeah, there'll be a happy dance goin on for ya... you better believe it.

                      2.) My new PCP, Dr. Nettleton, is a dream come true. The poor guy took over my care immediately following the myectomy and walked into a real mess. He had no prior history to go on, in fact all he had on file was my discharge order from the Cleveland Clinic. We established a good repoire from the start though, and he's trusted me to tell him exactly what i need from him and when. Fortunately, due to my degree in HCM-ology from the school of HCMA, this has not been a problem. I promised him that during our next visit i'll actually let him do the doctoring.

                      3.) I'm starting back to school a week from today, and i couldn't be happier. The dust cloud is finally settling from all my HCM issues, and i'm beginning to feel like i have a future again. I'll also have some financial aid to pay my electric bill for a change, rather than making the weekly call to beg them not to turn off my juice.

                      4.) I'm finally getting some help for my depression issues. I wouldn't normally mention something like this, but let's face it... when you get cancer, an HCM diagnosis, lose your job, your home, no assistance, and spend more than a year with zero income... you're bound to need some help, right? Mental health is a good thing... i highly recommend it! They may even be having a special today on mental health in your area.

                      5.) It's sunny and beautiful outside today. (Sorry, but four is such an ugly number... i wanted to have at least five good things to say today.)

                      Have a great day today folks. I'm having one. In fact, have a great day on me! I'll pick up the tab.

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

                      Comment


                      • #12
                        Re: maybe some good news?

                        Well if Jim can post some good things so can I!

                        1) Three weeks no hospital!

                        2) Have my plane ticket back up to Boston!

                        3) School started today. I think I may be able to pull this off!

                        4) Scholarship and financial aid so I can pay for my car again.

                        5) Still have most of the roof on my house after Charlie!

                        6) And just to out do Jim! I'm feeling pretty good!

                        May S.

                        Comment


                        • #13
                          Re: maybe some good news?

                          Thanks for the great news, Jim!! And yes, it is a beautiful fantastic day in Pennsylvania!! I'm having a better day just because of your post.

                          Some good new from me - Alan's appointment at Tufts/NEMC went very well and when I get more than 5 minutes at a time to be on this silly machine, I'll post and tell everyone all about it. Suffice it to say for now that Alan's alcohol ablation did work and he does not need a myectomy. Also, my father is in Critical Care at the hospital and has pneumonia and congestive heart failure, but yesterday, on his 84th birthday, turned a corner for the good and will probably get out later in the week. Have a great day, everyone!! :P

                          Ange

                          Comment


                          • #14
                            Re: maybe some good news?

                            Jim,

                            I am so very happy for you. Good news couldn't happen to a better person . You have been through more then your share of cloudy days and now the sun is really shining. Live life well and enjoy what you have recieved today for it truly is worth celebrating. If I were you I'd start polishing those dancin shoes cause I feel it in my gut you are going to be doing that happy dance.

                            Best of Wishes to you. 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


                            • #15
                              Re: maybe some good news?

                              Woo hoo!

                              Everybody take a look at my happy-dance... (you can't really see it of course, but if you go to next year's HCMA conference, i can guarantee you that you will witness this awesome spectacle first-hand.) YOW. Booty dance... shake your pants. Can you see the moves on this guy? He got it goin on! LoL. Guess you'll all just have to attend next year's conference to see this for yourself.

                              It's worth the trip just to see it!

                              Love ya all,

                              Jim

                              P.S. Lisa: We need to setup a DJ for next year's conference. If there ain't any ABBA, then why on earth would anyone make the trip? LOL. I just don't understand this... I need me some happy-dance-music to do my happy-dance to... get your priorities straight, girl. What were ya thinking?

                              P.S.S. Mary: Don't be trying to horn-in on my sunshine girlfriend... you think just because you been in the hospital 12 million times in the last year and had a little hurricane, you got anything to be happy about? LoL. You know i love ya, sweetheart... let's chat on AOL tonight.

                              P.S.S.S. Dangit, i'm in fine form today!

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

                              Comment

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