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.

Please keep Rob (No Crash) in your thoughts...

Collapse

About the Author

Collapse

Cynaburst Find out more about Cynaburst
This topic is closed.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #46
    Re: Please keep Rob (No Crash) in your thoughts...

    Haley,
    You are such a rock, even when you "break down." You ARE handling this battle even when you're crying, and yes, you do need those releases. You deserve awards for your strength and endurance. Please know that so many are continuing to lift ALL of you up in prayer. Those of us who are not able to be there, are there with you in spirit, holding your hand, whispering prayers of encouragement and strength, holding your children's hands, and praying them through the roughest of times. Thank-you for continuing to update the rest of us.

    May you FEEL God's peace which surpasses all understanding, as we all wait and hope with you.
    Theresa
    Last edited by THW; 02-01-2007, 05:07 PM.
    Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.

    Comment


    • #47
      Re: Please keep Rob (No Crash) in your thoughts...

      I am absolutely speechless. There is NOTHING anyone can say to you that will make things better. I wish I had a magic wand and could undo all this horrible stuff that's been going on for you and your family.
      You are a person to be admired. You have strength of character and of soul that not many people have. Don't be a martyr--it's ok to cry. I cry on a regular basis for the son I lost, and at first was harsh on myself for doing this. But, I soon learned that crying helps our minds to cope--it gets rid of the old junk and makes room for new junk.
      As I read your posts, it almost feels like I'm reading a novel. Only this is REALLY happening to someone. I pray that things work out for the best for you and your family.
      Linda G
      Son died of cardiac shock second to HCM at age 36.
      Live Well...Laugh Often...Love Much

      Comment


      • #48
        Re: Please keep Rob (No Crash) in your thoughts...

        I don't know what else to say but I am praying. I haven't met Rob or Haley, but I feel like I know them, thanks to this wonderful message board.

        I hope that Haley reads this once in a while and can feel all the love we are sending their way. She is an inspiration, as is Rob.

        God bless them and their family.

        Debbie

        Comment


        • #49
          Re: Please keep Rob (No Crash) in your thoughts...

          I, too, am lost for words. I've just been reading this post through, after being away from the board for a while, and feel great distress and sorrow that Rob should be in this state after all he went through before. I'm also thinking abour Haley, also, and how awfull this whole thing must be for her.

          To both of you, all I can do is send you my best wishes, and say that I will be thinking about you both.

          John

          Comment


          • #50
            Re: Please keep Rob (No Crash) in your thoughts...

            The latest from the blog:




            Saturday, February 03, 2007

            Chest Closed

            Here's a novel turn of events. Dr. Plunkett closed Rob's chest this afternoon without incident. I've grown accustomed to Rob's penchant for medical complications, so I feel a little giddy that nothing dramatic happened. I'm sure it helped that Dr. Plunkett took the extra precaution of scheduling the procedure for the OR, when he typically does this type of thing right in the ICU.

            We were all concerned about a fist-sized clot that had formed at the floor of Rob's chest cavity and the uncontrollable bleeding that might result from its removal. We were lucky that Dr. Plunkett removed the clot and staunched the bleeding very quickly. Rob didn't even require any donated blood; good thing since he's already had over 60 units since Monday.

            Closing the chest is a huge step in Rob's recovery from the BIVAD surgery. The sooner he recovers the sooner he'll be back on the list as Status 1A. That's what this is all about - keeping Rob alive long enough to get that next big heart and kidney.

            With his chest zipped up, Rob is looking better. I wouldn't go as far as saying he looks 'pretty good', but he definitely looks better than the last couple of days. His color is more normal - not so yellow - and his fingernails are looking pink instead of goth black. I'm worried he is still bloated with excess fluid.

            But today is a great day to be grateful for the great care he's getting at UCLA Medical Center. Dorothy, the transplant coordinator, told me she described Rob's case to a colleague at the Louisville hospital where she recently worked. "Doing a BIVAD on a transplanted heart? We don't do that back in Kentucky".

            = Haley Thomas =
            Reenie

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

            Comment


            • #51
              Re: Please keep Rob (No Crash) in your thoughts...

              It is so good to get a positive report. Keep on fighting Rob!! Haley you are a trooper. My prayers continue
              Midge

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

              Comment


              • #52
                Re: Please keep Rob (No Crash) in your thoughts...

                YES! Praise God. One more step on the way. I'm so glad to hear there were no complications and that he's looking a little better. Keep hanging in there. We're right here with you continuing the prayers.
                Theresa
                Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.

                Comment


                • #53
                  Re: Please keep Rob (No Crash) in your thoughts...

                  Checking on Rob daily...

                  Debbie

                  Comment


                  • #54
                    Re: Please keep Rob (No Crash) in your thoughts...

                    I've been out of touch and just now getting caught up. This is just beyond imagination! Rob, what a fighter you are. Haley, what an advocate and powerful woman you are. Frankly, I'm breathless after reading all this. I really cannot come up with any words that seem fitting.

                    Prayers are powerful and those are coming in immense measure.
                    Laura
                    Dx: HOCM 1991, Myectomy/Mitral Valve Repair @CCF July 19, 2005. Wife and Mom of two: ages 5 and 3.

                    Comment


                    • #55
                      Re: Please keep Rob (No Crash) in your thoughts...

                      From: http://heartforme.blogspot.com/

                      Monday, February 05, 2007
                      Rob's Condition as of Monday, 5 February
                      Rob had only one nurse today, which means things are looking up. The mob of white coats has moved three doors down to a fresh double-lung transplantee, who has taken over the title of the sickest person in the ICU.

                      The doctors decided to wean him off the sedatives veeeeery slowly, over the next few days. Despite the plan, last night they inexplicably turned off the sedatives for a short time. He woke up confused and very agitated, so they bumped the drugs back up to where they were. Today he was responding to me with the slightest twitch of an eyelid, but my spirits were buoyed.

                      His color look good, but what is the deal with all the fluid he's carrying? Amy says that the dialysis machine is keeping up with the IV fluids and blood products that are being pumped in, but overall he remains very bloated.

                      The situation is precarious. The nurses are keeping him stable by constantly tweaking this med or that, or dialing the dialysis machine up or down. I'm very concerned that an infection will knock him right off the edge of the precipice. And after all, an Intensive Care Unit is germ central.

                      In a few days I hope to report that he's awake, off the ventilator, and back in the real world again on Status 1A. Keep your fingers crossed.

                      = Haley Thomas =
                      posted by Haley at 7:18 PM
                      Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.

                      Comment


                      • #56
                        Re: Please keep Rob (No Crash) in your thoughts...

                        Haley,
                        Thanks for the report. Our prayers continue for all of you. May Rob come out of sedation slowly, steadily, and strong with no infections and setbacks arising. And may you feel God's loving embrace through it all.
                        Prayers of hope, peace, and strength,
                        Theresa
                        Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.

                        Comment


                        • #57
                          Re: Please keep Rob (No Crash) in your thoughts...

                          Does anyone know of any small things that Haley could use during this. I feel like I've gotta do something. I can't do much being a poor college student and all.Bbut is there anyway we can all pitch in maybe through Lisa or something and give her some gas gift cards or gift cards to local area restaraunts. We can't physically be there for Rob's family but I'm sure there is something we can do!

                          So, how bout it?

                          Mary S.

                          You've got a church of over a thousand here in Orlando prayin for ya buddy! Keep it up.

                          Comment


                          • #58
                            Re: Please keep Rob (No Crash) in your thoughts...

                            Mary, that's a good idea, but I don't even have their address. I don't know if Lisa or Kelly knows or not. I'd be willing to donate something for them if we can.

                            Reenie
                            Reenie

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

                            Comment


                            • #59
                              Re: Please keep Rob (No Crash) in your thoughts...

                              V-Fib

                              As I walked into Rob's room this morning, the EKG monitor looked like this:

                              [EKG strip showing V Fib]

                              I didn't freak because Dr. Plunkett had already told me that, with the BIVAD, it doesn't matter if Rob's heart kicks into arrhythmia or even stops working altogether. The BIVAD is really an external artificial heart that will keep the blood flowing no matter what.

                              This particular rhythm is ventricular fibrillation, or v-fib, and it started suddenly this morning at six. I was surprised to learn that they had already tried shocking him out of it three times with no result. I had assumed his heart rhythm, or lack thereof, no longer mattered. It turns out there is a school of thought that suggests v-fib type rhythms can cause dangerous blood clots. So throughout the morning they zapped him 7 more times, finally resulting in a more acceptable type of arrhythmia by about lunch time.

                              Dr Moriguchi, a senior cardiologist, surmised that at least one of Rob's coronary arteries is now fully occluded (from being only 70% blocked on Dec 28th) causing the v-fib. In other words, Rob was having a 6-hour heart attack.

                              Meanwhile the BIVAD machine kept chugging along like nothing was wrong.

                              I was disappointed that all this interrupted the weaning down of Rob's sedatives. They kept him deeply sedated all day and will resume the weaning tomorrow. I'm not sure when he'll be awake enough for the ventilator to be removed - certainly several more days.

                              Meanwhile, they have been suctioning a lot of blood from his lungs. Dr. Kelly called me at home an hour ago asking my consent to use the brochoscope to see what's going on down there. I fervently hope he finds an obvious cut or tear, and not a recurrence of the aspergillus infection from last year. I'm filled with dread that this would keep Rob in Status 7 limbo with no hope of a transplant.

                              Sweet dreams everybody.

                              = Haley Thomas =
                              Daughter of Father with HCM
                              Diagnosed with HCM 1999.
                              Full term pregnancy - Son born 11/01
                              ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                              Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

                              Comment


                              • #60
                                Re: Please keep Rob (No Crash) in your thoughts...

                                Hi Hayley,

                                Just to let you know that my thoughts and prayers are very much with you and your family and I appreciate your updates on how Rob is doing.

                                Kind regards,

                                Alison
                                New Zealand

                                Comment

                                Working...
                                X