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  • great heart now kidney?

    Dear friends, it is due to this website, lisa and the amazing docs at Tufts that i am here to write this posting. After 11 years on dialysis....and sypmtoms that were not addressed...someone finally found i had HCMA....after the MIRACLE ( and truly it has been a miracle!) My heart is great...and 6 months since the alcohol ablation i have now been going through all of the testing to be "Active" on the kidney transplant list. Even though i am sure that my heart procedure was a miracle...and so why NOT have another miracle...the long anticipated kidney transplant....As things get closer, i am scared/nervous. I live alone and have no family support...and the 'kidney people' are nothing like you guys.....it is a lonely field out there....So i am writing to ask for your prayers and blessings over the coming months. I am in the final tests for my heart....had treadmill test yesterday....then have another ecco today and then the 24 hour holter monitor on monday. I got really exhausted and legs cramped up pretty badly during the stress test....but considering the kidney situation and all....the doc seems to think i am doing okay. I am not sure what to expect of my body since i have a GOOD heart now, but still so many uncertainties in symptoms because of so long on dialysis. So i am breathing deep and continuing cardio rehab....Am also wondering if there is psych help for cardio patients....i've never had a social worker or any kind of REAL follow up since Boston. People here still don't know much about HCMA...and almost nothing about alcohol ablation ( ANd this is a mjor city!!!) So any info regarding support through cardio associations would be helpful....I feel i really need some local folks near me to assist with this big surgery. Thanks so much....thanks for all you love to so many!!! love, isabella (kelly)

  • #2
    Re: great heart now kidney?

    great job reaching out to everyone here! i am so very thankful for everyone that has reached out and helped me and my family so wonderfully!

    it is wonderful to hear the great progress you are making! keep up the great work!

    wasn't sure where you are located?

    i am a firm believer in counceling and making sure "everything" is getting help ... there are a variety of things you can do depending on your comfort level ~ and that will be key, to find something that will work for you that you are comfortable with ... there is everything from your local religous gathering places, to private secular opportunities ... and if you are not comfortable with one on one counceling, maybe also thru your local doctors, health departments, hospitals, etc you might be able to find a group type meeting that you would enjoy ... another way that i get thru things is by finding things that i enjoy (from scrapbooking, to cooking, something to do with my kids, etc) and find other people who like the same thing and get involved with groups for socialization and decompression time ~ girls night out has a whole new meaning to me ~ a night of scrapbooking or cooking, but i really enjoy it and i feel so much better afterwards ...

    sorry to ramble, hope some of what helps us can help you too ...

    again, keep up the great work, and you can pm e-mail me anytime you want to chat without posting a message
    \"Find rest, O my sould, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken.\" Psalm 62:5-6

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    • #3
      Re: great heart now kidney?

      Hi Kelly,

      Congratulations on the "Acitve" status for the kidney transplant. I sincerely wish you all the best.

      You have suffered long enough, you deserve a new kidney and now. And I hope and pray that you receive one very soon. God bless you for your strength and determination. I admire that.

      And congrats on the success of the alcohol ablation! I wish you continued improvement regarding your heart condition. You sound like you are on the right track both mentally and with medical treatment.

      I live in a major city too and there is no one here to do an alcohol ablation or a myectomy. Also there is no support that I know of for anyone with HCM or HOCM.

      I think some sort of counseling is good for everyone, especially someone with a chronic illness. I have sought therapy for my abusive childhood and for this heart condition, and it has helped me tremendously. Maybe there is a support group in your area for people with various types of illnesses, also, one on one talk therapy is very beneficial as well.

      Please know that my thoughts and prayers are with you. I pray that you receive all that you need and are well very soon.
      Stay strong, and God bless you.

      ((((((((((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.

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      • #4
        Re: great heart now kidney?

        Kelly,
        CONGRATULATIONS! I am so happy that all is working out well for you. When we first spoke I remember saying I can not promise anything...but I think we can help make a difference here. I guess I was right!

        I hope your kidney transplant moves forward well! Keep us informed on your progress!

        Best wishes,
        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)

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        • #5
          Re: great heart now kidney?

          Kelley---

          I'm here on the East Coast, so my suggestion for finding support would be to find networks in your local area that help folks on dialaysis and who are facing Kidney surgery.

          I have spina bifida, and I had a large amount of urological problems and several surgeries during my 20's to correct them. I'm now 58!! Also had a lifesaving ablation, just as you did!

          It's a tough road, but it leads to a vigorous, abundant life!

          Caroline Paulson

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          • #6
            Re: great heart now kidney?

            Kelley,

            So glad to hear your update . I have often thought and wondered how you were doing . I will pray that you get a new kidney very soon and that you find support through this process. At your dialysis center is there a social worker that can be seen while you are on dialysis?

            When I worked at the Kidney Center , many years ago , we had such a person. If there is such a person at your center they may be able to make a connection with an appropriate therapist tailored to your needs. Try the national kidney foundation also and see if they could help you as well. Good luck and I will pray for 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

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