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Pam Alexson single mother of 3 wonderful young adults;a special ed teacher, an RN and a senior accountant. Find out more about Pam Alexson
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  • Just a little update

    Recently I have been battling another episode of acute diverticulitis, I have lost count but this is the 4th treated episode and the others resolved thankfully with out the mega doses of toxic antibiotics. ( about 7 all told since Nov.)

    I went to NEMC yesterday and was told that I need to have a colectomy to remove the largest diseased part of my colon. That all being explained to me the doctor said to me , presently you are at a very high risk and in rather poor health to face a procedure that is so dangerous.

    She was mostly referring to the fact that the colon is a very contaminated place to do surgery on and the risks of infection and complications are numerous . She said on healthy individuals it is a concern. She stated my many ailments and my weight as a major obstacle.

    As I have stated in previous posts I am not a ballerina and am a hefty girl. My weight ballooned up as heart disease became a problem and my weight went up 100+ pounds. I have never been able to get it down with all the combination of health issues that I have and how HCM has also effected my heart , irregardless of having a myectomy that actually worked and has improved my living to some degrees.

    This is where she candidly spoke to me with great compassion and severity and said ," I can not imagine sitting here with you what it is like to live your life with all the problems you have and all the limitations that go with it." She spoke to me about wanting to help save my life. She said the next bout of diverticulitis could be the one to take your life, your bowel could perforate and this is a very dangerous situation.

    My head was realing.

    She said I would prefer at this time to treat the diverticulitis medically for the time being and to talk to you now about how we can safely get you to the point where we can perform the colectomy. She spoke to me about their very successfull, well known Obesity Clinic. She feels she could successfully and safely perform laproscopic gastric surgery on me . She feels this is the only hope for me and all my maladies . She said an HCM heart is not going to go away, you are not going to lose the weight because of all the ramifications of the disease on you and you impaired life style but the severe, added, impact of x amount of pounds on your HCM heart is surely worsening your life. She said I believe we can make a difference and we can save your life and get you back into it.

    Wow , this was so unexpected and yet amazing to hear her speak so graphically.

    She will be speaking to my cardiologists today and starting the process if they all agree.

    I believe from what I have read there is a lot to it .( lots of meetings and evaluations with behaviorists and groups). She told me she felt she could speed this along for me as I have a sound knowlege base and a strong medical background.

    So , I will keep you posted. Lets hope that treating the diverticulitis more aggressively will keep it in check so that the colectomy can wait until it is safer to do it.

    Thanks for hearing my story.

    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

  • #2
    Oh Pam

    I had no Idea what you were going through my heart goes out to you, as we have talked my daughter had her entire large intestine removed 2 years ago and i agree it is a big procedure and a tough one to recover from and she was just 26 at the time, i hope they can get it under control for you and I will think positive with you also and hopefuly you can become healthy enough to have the surgery if needed

    Shirley

    P.S IM me sometime ok
    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


    • #3
      Pam, prayers are said for you for strength and health. Let me know if you need anything at all.

      Reenie
      Reenie

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

      Comment


      • #4
        Pam
        What a scary time this must be for you. My heart goes out to you. Hopefully you will be able to get to where you need to be for this surgery.
        It sounds like you have a great Dr helping you, which makes all the difference in the world. Keep us updated, and take care of yourself.

        ((hugs))

        Pam
        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.

        Comment


        • #5
          Pam, I had 1/3 of my colon removed a year before my transplant due to diverticulitis. As they said after a transplant with a weak immune system it could do me in. I hope they approve you for the scope surgery. Good luck with all of this.
          Midge

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

          Comment


          • #6
            Pam,

            Thanks for the update, and so sorry to hear that you are having another dreaded bout with diverticulitis. It sounds to me like you have a great doctor on your side who wants to treat you in the most aggressive, yet safe and effective way possible. I respect a doc who tells it like it is... and boy have i heard my share lately.

            You take care, and be sure to let us know how everything turns out.

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

            Comment


            • #7
              Well Pam Dearheart,
              It looks like you got the right doctor at the right time who will lead you to the right resolution of your problems. We often complain about doctors, frequently with good reason, but sometimes ‘Somebody’ takes a hand in things, and everything goes right for a change.

              We’re all pulling for you, and asking ‘the Man upstairs’ to do His thing for you. Please keep us posted on how things go from step to step so we’ll know what to ask for – when.
              We all love you,
              Burt

              Comment


              • #8
                Pam,
                I am sorry for my delay in this reply. RE: the wieght loss - I am aware of one other HCM'er who had a gastric by-pass - interestingly he was diagnosed AFTER the procedure - and went on to a myectomy. He is doing very well today.

                You need to do what is best for the WHOLE you - and we care very much about you - we want whatever is best for you!

                We are here for you when ever you need us.

                Stay well - BIG HUG!
                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


                • #9
                  Thank you everyone for your wonderfull support and caring. It really makes all the difference in the world to have a support team when faced with critical decisions regarding aspects of our health and lives.

                  I am so very fortunate to be a part of such a great network of special people here at the HCMA and so very thankfull for all of you.

                  Although HCM is not part of this whole other medical problem , I believe certainly it has compromised my and others of you in how our bodies deal with additional medical problems. I have read that of course beta blockers and calcium channel blockers can impair the circulation to distal points , like our hands , feet and certainly the large intestine is a distal point. I theorize that this impairment for me has meant that my system does not take care of itself as well as if I were not on huge doses of these meds to keep my heart rate low and relaxed. Adequate blood supply is imperative to providing nourishment , oxygenation and removal of debris from our bodies to be healthy. I personally think that the effect of these meds have contributed to my multiple system failures. I have noted that I do not heal as quickly as I once did. For me this means for the long haul I have got to get down to lower doses of all my meds so that my body can function more normally inspite of ongoing issues with HCM.

                  The talk that the surgeon gave me really struck a chord , yes HCM is not going away, but what can be done to prevent further deterioration of multi systems is to try to stop things by fixing things we still have time to fix. Makes sense right?

                  I hope there is a reasonably heathy plan for me .. I will let you know what comes as all the docs talk.

                  Burt and all, you are right I am very fortunate to have found some very excellent docs. Not like my earlier days!

                  Midge , I had forgotten about your prior colectomy, thank you for mentioning it. You are a survivor and a great inspiration to all of us.

                  Again to you all thanks, I love you guys.

                  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


                  • #10
                    Pam,

                    I'm sorry to hear what a rough time you're having with your health, glad that you feel you have a doctor who is really trying to look at what is best for you overall and willing to help you there. You are so informative and helpful with all of the rest of us, I am another voice wishing you the very best. Please keep us posted. You must be one tough woman! Good luck with the next phases.

                    Best regards,
                    Lisa I.

                    Comment


                    • #11
                      Pam,

                      I am praying for you. I'm so sorry you have this health problem added to the HCM.

                      It sounds like you have a very caring and knowledgeable doctor working with you. That is so great.

                      I agree with your theory.

                      I hope, pray and wish the very best treatment for you. Please let us know what the next step may be.

                      I will keep you in my thoughts and prayers. I wish there was something I could do for you.

                      Hugs,
                      Eve
                      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


                      • #12
                        hi Pam Im also sorry to hear about all thats going on with you.My father spent a large part of his later life sick.he had a heartattack when he was 34 yrs old(I believe he had hcm,but he has passed away) so I will never know for certain.that was in 1971.he lived until afew years ago.he also had bouts of diverticulitis I remember he didnt eat once for 13 days.He was a good father,and consistently kind to me.Im bringing him up because he was for my entire life obese, his avg.was about 300lbs.he was 5;9.Once when I was visiting him in the hospital.I had run down to the snack bar for a sandwich and some other junk.he asked me what I was doing to myself(Ihad been steadily gaining weight)he told me dont let what happened to him happen to me.He told me that weight had taken so much from him throughtout his life.things like just being able to throw a ball around in the park,he missed out on.I know that weight loss wont change a hcm heart ,but lets be honest with ourselves it might help.It would reduce the stress on the heart signifigantly and might improve our quality of life.I have met people who have underwent the surgery that you are considering,and they have lost a lot of weight.they also can do things that they hadnt been able to do for years.I pray you feel better and you take the drs advice take care mike I apologize if I sound to rough
                        One day at a time.

                        Comment


                        • #13
                          been there, done that

                          Dear Pam,
                          Sounds like you have a smart and empathetic doctor, congrats. I had gastric bypass two years ago for the express purpose of putting less strain on my heart. It was the best decision I ever made. The recovery was quick, the weight loss rapid, the benefits cannot be measured! Make sure the surgeon and hospital who does it is very experienced, and make sure your cardiologist is part of the team. If you want to send me a private message to talk about this, feel free to do so and I can give you details if you wish.
                          Weight loss will not cure HCM, but you will feel better, your heart will be less taxed, and the weight loss will assist you in recovering faster from any future surgery you may need for your HCM. I speak from experience.
                          Perri
                          I am 47 yr old female, mother of two. I have had two myomectomies and an aortic valve replacement.

                          Comment


                          • #14
                            Hi, Pam,

                            When I was home the gastroenterologist also recommended a colectomy. He was so casual about it, I could scarcely believe it. He basically said that since I continue to have frequent bouts of diverticulitis, it was the only solution. So, I am giving serious consideration to doing it either this summer or, more likely, next winter. I think I fear a perforated colon in China almost more than I feared crossing Beijing streets when my heart kept stopping. As I mentioned before, my sister had a perforated colon and nearly died several times as a result and has never been in good health since then.

                            So, I will pray that you can get the help you need and not need a colectomy until it is safe for you.

                            Rhoda

                            Comment


                            • #15
                              Thank you all , I was away from the computer yesterday so sorry for my delay in response. It is although not good that many suffer from this potentially lethal condition , it is at least another source of support and comfort through sharing.

                              Mike , no you were not too rough. My grandmother suffereed from diverticulitis all her life and died from issues related to it. When we saw her , I was shocked by how big her abdomen was. She was a frail women and looked pregnant. That is how it seems to strike me. My abdomen gets very large and being built like my dad , that is also how I carry my weight. Had trouble delivering babies cause my pelvis was so small, but couldn't wear a belt if my life depended on it!

                              It is hard to see our loved ones suffer and I realize my many health issues take a toll on my family , especially my children , my mom and my sister. My dad is alternating with me regards the diverticulitis problem and at least I have him upping his fiber like me to prevent future bouts or to at least try and limit them. Thank you for sharing your story with me.

                              Perry , I definitely will be PM'ing you in the near future. Thank you for making the offer to share info it will be very helpfull.

                              Rhoda, I have thought of you so often as I go through this. You being so far away and this likewise being a big problem for you. I think for you too the colectomy will be a good idea. Many have recently told me how it has made a very positive difference in their quality of living. Here's hoping it all comes out good for us too.

                              I am still waiting to here from my doctor and am sure she is waiting for the go ahead. It sounds like my cardiologists are very busy these days and have a lot going on . The increase in fiber is keeping most of the pain in control with a few break throughs. I am scrutinizing everything that I eat very carefully.

                              Again , many thanks for all the kindness you all give.

                              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

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