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

Announcement

Collapse
No announcement yet.

A week in my life!

Collapse

About the Author

Collapse

Lisa Salberg Find out more about Lisa Salberg
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • A week in my life!

    Hello to all!

    Well I have had a rather busy, crazy, educational and exhausting week! Lets start last Wednesday night. Becca, my daughter, and I were packing to head to Boston for her stress test and MRI. She wanted to try on a skirt in her closet that had been a gift a while ago but was too big. I was thrilled she actually tried on a skirt without me begging! It looked lovely on her. She went to take it off and was in a hurry. She bent over as she unzipped it catching the zipper in her skin! OUCH! We tried unsuccessfully for over an hour to get it off. Needless to say this was very painful and there were a lot of tears. OFF TO THE ER – I gave up! Thankfully there was no wait and they were able to numb her skin and cut the zipper apart and it fell off, amazingly without a drop of blood! We were home at 11:45pm.

    Last Thursday Becca and I headed off to Boston for her testing. We had a nice dinner out with Dr. M. Maron and Becca got to show off her hospital bracelet from the evening before. We stayed at the Best Western Inn on Longwood, a lovely hotel next to Children’s Hospital. Becca had a stress test and EKG Friday morning and saw Dr. Charlie Burel. She did fine on her tests and she was ready to see Dr. M. Maron for here MRI. I had forgotten to tell Becca one little detail about the MRI – the injection of contrast agent, well forgot is not the best word, omitted would be more truthful. So she only had but a few moments to dread the needle, and when it was over a few tears were shed but she was just fine.

    The images from the MRI were simply amazing. To be able to see the heart in such detail was helpful, enlightening and truly educational. As far as official diagnosis goes, Becca is still officially clear. However, I think this is only because she falls into the category of ‘we have never been able to see this before so we do not know what it means’. Becca's measurements are not typical in all regions of the heart. You would expect to see the thickness of the heart remain equal though out the heart, hers does not. In the basal septal region the wall measurements are 30% larger than all other portions of her heart. At its thickest it measures about 10.3mm not over the 12.0mm which will have all agree that it is HCM. As the remaining portions of her heart walls are an equal .7mm and only the basal septum is 10.3mm is says to me that yes, in fact this is HCM, however clinically there is no literature to back this up. We are reviewing our options and at this time the question is do we treat her for the episodes of inappropriate tachycardia or not. So I am in a state of confusion at this point as to what to do with my own daughter.

    Saturday night I was to go to my mother in laws to have a nice quite Hanukah dinner. I had no time to do anything around my own house so I called my mother in law and she packed up the meal and brought it to my house. We had a lovely dinner, lit the candles and them proceeded to decorate the Christmas tree! Not a traditional way to decorate a Christmas tree, but I do not have a traditional family! Sunday was busy too, off to my brother in laws to celebrate Hanukah with the rest of the family. Sunday night I packed to head off to Cleveland.

    Monday morning I was off to Packard. I had to handle some items there and run a holiday party for 80 people! OK the party was over and off I head to the airport!
    I get there with 20 minutes to spare! Only to get on the plane and be delayed for 2 hours due to snow in Cleveland. After being told a few times that Cleveland had closed the airport then changed there minds and reopened it and after several time changes we finally took off. I landed in Cleveland at 9:00pm

    At 7am I was waiting to observe a myectomy. I have written a very detailed account of this and you should all see it in the next few days in your emails!
    After a very long, educational and interesting day at the Cleveland Clinic I enjoyed a wonderful evening out with Dr.Lever, his wife, Dr. Lytle and Dr. Kapadia.

    The next morning I headed home at 6am and after a day in my office at Packard I made my way home to my own bed!

    THE END!
    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)

  • #2
    Re: A week in my life!

    SSSSHHH Woman! You do a lot. I hope Becca the very best it must be challenging for her right now.

    Won't it be nice when they finally get the technology approved so that one day even those of us with AICDs will be able to get that MRI.

    I would love any info you could pass along on it. I'm getting back to my life now and it is going to focus in research. Lisa, do you know of any place I can go to get info on what courses I need to take. I know my end goal but just don't know how to get there. After these last nine hours I am going to be University bound. My grades are around a B+ and I'd be willing to go just about anywhere (except University of FLorida).

    Best wishes to you and all of your family!

    Mary S.

    Comment


    • #3
      Re: A week in my life!

      Sorry Mary I am not sure where to suggest you look for course information.
      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


      • #4
        Re: A week in my life!

        Hey Mary,
        Most Colleges and Universities have the programs they offer, along with the courses required for them – all available on the internet. Their postings include applications, instructions, and all the minutia attendant thereto.

        If I’m not mistaken, Webster’s College dictionary still lists all the accredited institutions of learning in the US – and I think Canada also. If that is not available to you, I believe this information is also posted on the internet.

        OK, pick the places you would be interested in moving to, then check the colleges and universities in that area to see if any of them offer the course of study you are interested in – and then check the rating of the schools that meet your desires. When you have all three things in the plus column, write to them for more information. You might also write to the dean of that department and/or listed teachers/doctors and ask for their insight, after telling them about yourself and what you are interested in. If they list guidance councilors, check with them also – along with any doctors who are in any way affiliated with the institution. Also don’t forget to check on what student financial help would be available to you at each institution. Then comes the process of winnowing it down to just the top three or so, and making your final decision.

        Then it’s just a matter of getting it done,
        Grandpa Burt

        Comment


        • #5
          Re: A week in my life!

          Boy Lisa , I had to have a nap after reading your post Just imagining all that activity wore me out.

          I am sorry that the news is not complete for Becca and the ifs may lead to full development of the disease. She has a good mamma and lots of extended family members here who will always try and support her through any tough times that may come.

          I hope you can get the time to slow down a bit now and enjoy being home. You are one up on me as far as the holidays, there is no tree yet or decorations here. Hopefully I will get some help with that tomorrow.

          Hugs to you and Becca.

          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


          • #6
            Re: A week in my life!

            Wow!!

            You did a lot! I'm with Pam, I need a nap after reading all that you did.

            I hope everything works out well for your Daughter. And I really hope and pray that she is not developing this disease.

            I will keep Becca, you and your family in my thoughts and prayers.

            Hugs -- Eileen
            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.

            Comment


            • #7
              Re: A week in my life!

              It sounds like you were really busy. I don't think I'd ever be able to do all that.. wow
              I cannot fear death, because when dead, death does not exist. Love is the reason for being, it can never be taken away nor lost, so hold on I will, and in death I will not part, but rejoice for the time I’ve had with you.

              Comment


              • #8
                Re: A week in my life!

                I guess a "normal" person could have the week I had and not think twice... boy oh boy am I paying for it now - I am so tired and I need this weekend to REST!

                Take care all!
                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

                Today's Birthdays

                Collapse

                Working...
                X