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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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  • BlueDevil
    replied
    Gee whiz, I turn my back for a few days and all **** breaks loose around here.

    I'm sorry to hear about all this. It sounds like you have a terrific doctor, though, and I hope this course of treatment will be a big help you.

    -- T.

    Leave a comment:


  • cynthiaG
    replied
    Pam,
    I am so sorry to hear what you've been going through. My thoughts and prayers are with you. We are all pulling for you

    Leave a comment:


  • Linda
    replied
    Pam, Thinking of you, praying for you as you work your way thru these next decisions. Linda

    Leave a comment:


  • Perri Carol
    replied
    Pam,
    My thoughts and prayers are with you. Good luck.
    Perri

    Leave a comment:


  • Pam Alexson
    replied
    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

    Leave a comment:


  • Laoshur
    replied
    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

    Leave a comment:


  • Perri Carol
    replied
    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

    Leave a comment:


  • michael obrien
    replied
    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

    Leave a comment:


  • Eileen2345
    replied
    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

    Leave a comment:


  • Lisa Inman
    replied
    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.

    Leave a comment:


  • Pam Alexson
    replied
    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

    Leave a comment:


  • Lisa Salberg
    replied
    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

    Leave a comment:


  • Burton Borrok
    replied
    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

    Leave a comment:


  • mtlieb
    replied
    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

    Leave a comment:


  • Midge Rollins
    replied
    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.

    Leave a comment:

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