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

  • #16
    Re: Please keep Rob (No Crash) in your thoughts...

    Haley

    You and your family remain in my thoughts and prayer

    Shirley
    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


    • #17
      Re: Please keep Rob (No Crash) in your thoughts...

      Rob and family - our prayers continue - Linda

      Comment


      • #18
        Re: Please keep Rob (No Crash) in your thoughts...

        Rob and Haley. I will pray for you. Thg

        Comment


        • #19
          Re: Please keep Rob (No Crash) in your thoughts...

          Rob's Condition as of Monday, 22 January
          There's been no change in Rob's condition today.

          A trusted doctor from the last ICU stint told me and Mary that Rob needs to stand firm and not get any worse. Another setback could mean that even a transplant won't do him any good. So, 'no change' is good news these days.

          They have eased off somewhat on the sedation resulting in his reacting a little when I speak to him. He tries to open his eyes although I'm not sure how much he can really see. He also lifted his right hand toward his chest, whichI held on to during our visit.

          This is all so heartbreaking I'm not sure I can bear it. I visited Shea's 3rd Grade teacher before school today and experienced my first anxiety attack. While I was filling in Mrs. Miller on our situation, I quite suddenly and unexpectedly felt dizzy and black blotches clouded my vision. My heart was hammering and I broke out into a sweat. Not sure what was happening, I quickly excused myself and while walking to the car my chest felt tight, followed shortly thereafter by chest pain.

          By this time I had reached the car and I was alarmed. I thought "This can't be happening- we don't have a spare parent anymore." Some deep breaths eased the chest pain so I realized that this probably wasn't a heart attack. I made the brief drive up the street to my general practitioner's office where they checked me out immediately and confirmed it was an anxiety attack.

          Abandoning any pretext of being in control, I called upon Mary to drive with me up to UCLA. This definitely isn't for wimps.

          = 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


          • #20
            Re: Please keep Rob (No Crash) in your thoughts...

            Haley,
            I realize you have "real" friends, (meaning, ones you have actually met, rather than those of us who only know and love Rob through the HCMA), but I want you to know just how much "others" also are praying for him, you, and your children. We are there with you in spirit, holding your hands, whispering prayers throughout the day and night, sending positive vibes, thinking of you, holding you in our hearts, hoping....and we will continue. You are not alone.
            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


            • #21
              Re: Please keep Rob (No Crash) in your thoughts...

              Haley,

              I cried for quite some time when I read everything . Although, Rob and I have never physically met we have talked many many times. When I was being evaluated for a heart transplant Rob always had encouraging words for me and I grasped onto them and it comforted me.
              I know there is nothing I can possibly say to comfort you but I pray that God's word will: "my flesh and my heart may fail but God is the strength of my heart and my portion forever. Psalm 73:26

              Please remember we are all praying for you and your family just remember "God cares so wonderfully for flowers that are here today and gone tomorrow, won't he more surely care for you? You have so little faith! And don't worry about food - what to eat and drink. Don't worry whether God will provide it for you. These things dominate the thoughts of most people, but your Father already knows your needs. He will give you all you need from day to day if you make the Kingdom of God your primary concern. (Luke 12:28)

              God Bless,
              Mary S.

              Comment


              • #22
                Re: Please keep Rob (No Crash) in your thoughts...

                God bless Rob
                Our thoughts and prayers are with you.


                Barbara & Stuart
                Cleveland Myectomy Club
                August 31, 2004

                Comment


                • #23
                  Re: Please keep Rob (No Crash) in your thoughts...

                  For Rob and his family.
                  I was so sad to read what has been happening with ROB.
                  I cant imagine how difficult and terribly painful all this must be,
                  for all of you.
                  Rob is such A GREAT GUY,and has helped me many times on the boards.
                  I will pray that everything works out ,and that Rob will be rejoining us here shortly.
                  Sincerely mike obrien
                  One day at a time.

                  Comment


                  • #24
                    Re: Please keep Rob (No Crash) in your thoughts...

                    Felix and I both have Rob in our thoughts. I can only imagine what Haley is going through here. It has got to extremely hard on her.

                    Sandy

                    Comment


                    • #25
                      Re: Please keep Rob (No Crash) in your thoughts...

                      Thursday, January 25, 2007

                      Plan B

                      Rob has thankfully not gotten any worse. He is deeply sedated so he is not responding to me at all - not even an eyelid twitch. I am concerned we are on Day 7 of the ECMO machine and we have to move to Plan B very soon.

                      As I mentioned before, the ECMO bypass machine canít be used forever because his organs will fail. This is because the ECMO membrane shreds blood cells. This is happening to Rob so they are giving him whole blood to try to make up the difference.

                      However, we need to avoid blood products because they come loaded with the antibodies of the blood donors, complicating the organ rejection scenarios. Dr. Kelly mentioned that Rob still has the antibodies of all of his previous blood donors running around in his body. Thatís the antibodies of about 60 different people. It takes a village, but this is ridiculous.

                      For some lucky people a few days on ECMO will rest their hearts enough that their hearts are ready to behave and get to work when ECMO is discontinued. Unfortunately this is not Robís case. On Tuesday morning Dr. Kelly paused the ECMO machine for 90 seconds to switch out the tubing. Robís heart kicked into v-tach during the entire time.

                      With ECMO not tenable, the Docs are looking at implanting a bi-ventricular assist device (BIVAD). Dr. Kelly told me that he, Dr. Plunkett and Dr. Kobashigawa are wrestling with whether a BIVAD makes sense for Rob.

                      Like ECMO, the BIVAD is an external pump which in this case attaches directly to the heart (ECMO hooks into the large arteries of the groin). It pushes the blood through the bodyís regular circuit through the lungs - much preferable to the shredder - and throughout the body and back to the heart. It is attached to a machine the size of a washing machine except half as deep.

                      The major advantage of the BIVAD is it might keep him going for a few weeks until we can find that linebacker heart and kidney. The Docs might even remove the ventilator and reduce the sedation so we can have Rob back and he can participate in the decision making.

                      There are formidable risks however. Implanting the BIVAD is an 8-hour open heart surgery which is very dangerous in his fragile state. Dr. Plunkett, who will perform the surgery, is concerned that Rob wonít survive the surgery. He wonít tell me any percentages, but my interpretation of what Iíve heard, and the squirming body language Iíve seen, is Robís chances are 50/50.

                      There is also risk in complicating future chest surgeries including the next transplant. Every time a personís chest is opened there is another layer of scar tissue and more insult to the breastbone. The scar tissue is especially tricky to work with and it bleeds like crazy. In fact, the UCLA Heart Transplant Program will not accept otherwise suitable transplant candidates who have had too many open-chest surgeries.

                      There are also the usual risks with surgery from the general anesthesia and infections - again an extra concern with a critically ill patient. I still shudder when I think of how aspergillis and pseudomonas derailed Robís recovery last time.

                      Bottom line: I consented to the BIVAD. What other choice was there? I prefer the chance that he might die during the BIVAD surgery to a certainty that he will die under the status quo. Dr. Plunkett, who really, really does not want to do the BIVAD surgery if he doesnít have to, wants to wait a couple of days. After all, a suitable heart and kidney could come in today or tomorrow. He told me he once had a patient who was being transported to the OR for his BIVAD surgery when his heart came in; they did the transplant instead.

                      Frankly these ďI once had a patient who....Ē stories are not very helpful to me these days even though they are loaded with dramatic interest. I suppose I have enough real-life drama to satisfy me.

                      I guess I doing OK. Yesterday (Wednesday) was especially frustrating trying to meet up with Dr. Plunkett. On mid-morning Tuesday, Robís nurse Rosie told me that he wanted to see me right away regarding the BIVAD. Mary and I waited in the visitorís lounge until after the 8pm shift change with no Plunkett sightings. When I arrived on Wednesday morning, nurse Alla told me I had missed him by 10 minutes. I decided it was probably better to camp out in the ICU than to wait in the lounge.

                      Robís room is so crammed with machines there is no real estate for even a chair. So I found a spot just outside Robís room, but still in the thoroughfare of the ICU. It was very difficult. Even pulling in my elbows, knees and feet didnít keep me from being constantly bumped and jostled by doctors and nurses rushing by. After three hours a technician started setting up someone else's ECMO right next to me. He kept elbowing me and muttering under his breath. Just then Alla told me Dr. Plunkett was in the OR and would be out in 4 hours.

                      This was too much. I started to cry. I told Alla something mature like ďTell Dr. Plunkett if he wants to talk to me he can use the frickiní telephone.Ē I stomped out of the ICU. It was my turn to mutter to myself as I stormed out to the car.

                      As I sat in the car for a few minutes I realized I did want to see Dr. Plunkett in person. It made no sense to drive all the way home, an I wasn't about to go back into the hospital, so I ended up driving aimlessly down Wilshire Blvd. I ended up at The Grove shopping center in Beverly Hills where I ate junk and walked around.

                      When I returned to the ICU it was closed to visitors for somebodyís open-chest procedure. I was back waiting in the lounge. When Dr. Plunkett finally showed up I felt pretty guilty. He was obviously operating on no sleep - his eyes were watery and rimmed in magenta and his normally dapper self was frumpled.

                      For Dr. Plunkettís sake as well as Robís, I hope there is a new heart and kidney today or tomorrow.

                      = 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


                      • #26
                        Re: Please keep Rob (No Crash) in your thoughts...

                        Haley

                        I'm lost for words. I pray daily for a new heart and kidnies for Rob. Please know that I pray for strengh for you too. I know that you are a strong lady, but how much more can you endure? Know that there are so many people praying for both you and Rob and hold you both so very deep in our hearts.

                        God Bless
                        Esther

                        Comment


                        • #27
                          Re: Please keep Rob (No Crash) in your thoughts...

                          Have mercy O Lord, have mercy.

                          Leon
                          God Squad co-moderator
                          Nothing is as gentle as strength and nothing is as strong as gentleness

                          Comment


                          • #28
                            Re: Please keep Rob (No Crash) in your thoughts...

                            Haley

                            Bless your heart and Rob's and I really hope a heart and kidney come very soon, God Bless you both and you both are still in my prayers

                            Shirley
                            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


                            • #29
                              Re: Please keep Rob (No Crash) in your thoughts...

                              I didn't discover this post until just now, just finished reading the blog and I am just sick. I am so sad for these guys, and all they have been through.

                              My mom had a transplant, we lived the hope for a couple of days and rode the rollercoaster of emotions as she failed. This happened in the span of 2 weeks. It was a life-changing experience.

                              Haley and Rob have ridden this rollercoaster since March. My heart goes out to them so much.

                              I want to send my most heart-felt best wishes to them. I will pray.

                              Debbie

                              Comment


                              • #30
                                Re: Please keep Rob (No Crash) in your thoughts...

                                My thoughts and prayers go out to you. The waiting must be unbearable. I would have had more than an anxiety attack by this time. You are a very strong person, and I wish you all the best.
                                Linda G
                                Son died of cardiac shock second to HCM at age 36.
                                Live Well...Laugh Often...Love Much

                                Comment

                                Working...
                                X