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.

Mark's myectomy date at CCF is January 11th....

Collapse

About the Author

Collapse

blimpie1226 Find out more about blimpie1226
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Mark's myectomy date at CCF is January 11th....

    Greetings:

    I had started a previous thread ("Do you have room for one more in the Myectomy club?"), but was urged by many to start a separate topic thread with my expected surgery date in the title. Anyhow, I just wanted to thank so many of you for your replies to my earlier thread and also for your very helpful private messages (particularly Theresa, Stuart, Catherine, Pat and Scott ).

    As the title suggests, my day at CCF is closing in on me. Though after hearing about Scott's (scottonbike) recent experiences, I know that nothing can be cast in stone. My wife and I will leave for CCF one week from tomorrow. Then it will be two days of tests and consultations with Drs. Lever and Smedira prior to the myectomy being performed.

    I have been doing some treadmill walking recently in hopes to build up my lungs and stamina. Although, I can only stay on it about 20 minutes at a time. Other than that, I have spent the better part on the month dodging in an out of hallways to avoid any of my kids who have snotty noses or persistent coughs that are so common this time of year...

    Unfortunately, my wife and I have both lost our jobs recently and are planning on applying for financial assistance through CCF directly to help with the coming medical bill onsurge. If anybody else has had any prior experience with this financial aid process, I would welcome any further advice. I booked lodging reservations at the CCF Guesthouse for my wife. The other hotels may have been more convenient (some with pedways to CCF), but they were $ 60-80 per night higher than the Guesthouse when daily parking charges were taken into account.


    By the way, Scott: I hope you can still keep that January 3rd date. I know you were hoping for December 30th but all will go well for you...I just know it will. Maybe I can pop in on you one day before you head home!

    And also to Theresa: Believe me, January 19th for you sounds like a long time away, but it will just fly by now that the Christmas and New Year's holidays are passing!


    I hope that everybody had a very Merry Christmas and will be safe tonight as they ring in the New Year. Personally, I know that I am very hopeful that 2006 will end up better for me than did 2005...May God bless you all.


    Thanks for your replies,

    Mark Ruth
    Lexington, KY
    Age: 38
    Wonderful wife of eleven years (Gena) with three great kids (Lindsey, Conner and Laney)!
    HOCM diagnosis: January 2004
    CCF Myectomy Club: January 16, 2006

  • #2
    Mark, It sounds like you have things pretty well in order. I'm sorry about your job situation right now, I hope your wife has some promising leads for after the surgery. You'll be recovering for a while anyway.

    Sounds like you're doing pretty good on the treadmill. As for the Guest House, I don't see how you could find a place more convenient. It's right there and also next to a RiteAide with a pretty good supply of foods.

    Wishing you the best! Linda

    Comment


    • #3
      Hey Mark,
      Good to hear from you. I'm sorry to hear about your and your wife's jobs. I hope that you were able to enjoy Christmas with your kiddos and that the financial assistance comes through for you guys.

      Where will you be staying? We're going to be at the InterContinental Suites (NOT the one with the Conference Center) on Euclid Ave. I hope to be able to look you up when we get to Cleveland. Sounds like you're preparing well; stay strong. You and your family will be in our 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


      • #4
        Hey Theresa:

        My wife and I made absolutely CERTAIN that this Christmas would be both enjoyable and memorable. It was wonderful for the kids--but with the CCF trip coming soon--it was also more hectic than usual.

        Gena (wife) and I will be staying at the Guesthouse for the duration of our visit. I know your surgery is scheduled for the 19th, but do you know which day you will be arriving yet? I'll send you my wife's cell phone number via a PM.

        While there, maybe we can both pay Scott a visit if he hasn't already departed...


        Wishing you and your family well,

        Mark
        Lexington, KY
        Age: 38
        Wonderful wife of eleven years (Gena) with three great kids (Lindsey, Conner and Laney)!
        HOCM diagnosis: January 2004
        CCF Myectomy Club: January 16, 2006

        Comment


        • #5
          I hope that Scott is gone home to finish recovering by then, but I got your message and will certainly look you up.

          We will be arriving late on the 15th, as I am scheduled for a cardiac cath on the 16th, meeting with Dr. Smedira, anesthesiologist & op. team on the 17th, then any further pre-op testing on the 18th, and surgery on the 19th.

          Anyone else out there planning to be in Cleveland soon?

          Blessings,
          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


          • #6
            Wishing the best to all 3 (Mark, Theresa & Scott).

            Nice to see the support you guys give each other. Sounds like there is a good chance that your families will be supporting each other in Cleveland.

            The best to Mark, Theresa & Scott.

            Stuart
            Cleveland Myectomy Club
            August 31, 2004

            Comment


            • #7
              Well Stuart, we learned from the best, all of you that have been through this (and even those who have not had myectomies) and paved the way.... The folks on this board are incredible. I will never forget how touched I've felt by the private messages I've received, especially from those (at the time) near strangers, sharing their phone numbers! Not to mention the actual phone conversations I've had with so many of you. I think I told you on the phone, Stuart, that I hoped to "pay it forward." I'm not there yet, but I still have full intentions of doing so. See what ripple effect YOU, YOURSELF have made!?! You've really made a difference! Thank-YOU.
              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


              • #8
                I couldn't have said it any better Theresa....It is hard for me to articulate how helpful that this board has been to me over the last two years. Of course, the board is nothing without the members. So to one and all, I thank you.
                Lexington, KY
                Age: 38
                Wonderful wife of eleven years (Gena) with three great kids (Lindsey, Conner and Laney)!
                HOCM diagnosis: January 2004
                CCF Myectomy Club: January 16, 2006

                Comment


                • #9
                  Mark,
                  I think you're probably in Cleveland by now or I guess tomorrow, but just wanted to let you know we're thinking of you as you begin this journey there. You and Gena will be in our prayers. And we will plan on meeting both of you the week of the 16th --- hopefully close to the time you'll get discharged.
                  Blessings,
                  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


                  • #10
                    Hey Theresa:

                    Yep. We got to the Guesthouse about 11:00pm last night and had an extremely eventful day at CCF. All told, I spent about seven hours there doing labs, echo, EKG, chest x-ray, etc...In addition, I had consultations with Dr. Lever , the anesthesiologist and my surgical pre-op clearance. Whew! All I can say is: Cheese Crackers rule.

                    Now, the not-so-good news...All of my careful planning and preparation where this surgery is concerned may have all been for naught. I have been sanitizing, rinsing, avoiding coughs, etc.. for weeks knowing what the ramifications might be if I did not. I thought I was both mentally and physically prepared for this surgery to take place on Wednesday. Now, there's a pretty good chance that the mission might get scrubbed tomorrow.

                    You see, like most of the other full grown men on this board, the worst part about having EKG's, Heart Caths and Stress Tests are those damn electrodes that make mince meat of my chest hair. Normally, the techs use a straight Bic razor (dry) and violently remove all folicles that are anywhere near the target. Of course, that leaves lots of stinging rashes later on.

                    So, in an effort to avoid all of that, yours truly took it upon himself to shave the entire chest area cleanly and carefully about four days ago. I actually quite admired my handywork; except there is a slight problem. I now have a slight rash--really a razor burn--on a few portions of my chest area.

                    Dr. Lever took one look at that today, and told me that he thought it might mean delaying the surgery....get this...for TWO WEEKS. I was upset when I thought he was going to say it would be delayed two days. His feeling was that the risk for infection did not need to be increased in any way--so why take the risk. Can't argue with his logic...I just hate it because I tried to be so careful with my preparation. Nowhere did I ever see or hear anything like this mentioned. Completely my fault, but I still think it sucks.

                    My one saving grace is that I have essentially tonight to get the rash cleaned up with a sanitizing soap that CCF gave me today. Because Dr. Smedira has the final call in the matter, I will not know what their decision will be until sometime after 10:00am tomorrow when I have my consultation with him.

                    It's kinda hard to swallow the fact that, while I did all that I could to avoid high risk individuals these last few weeks, I essentially BECAME a high risk patient by my own hand. To say that I am disappointed right now is an understatement.

                    We'll see what happens overnight. Hopefully, I'll be able to post some good news tomorrow.

                    Take care--

                    Mark
                    Lexington, KY
                    Age: 38
                    Wonderful wife of eleven years (Gena) with three great kids (Lindsey, Conner and Laney)!
                    HOCM diagnosis: January 2004
                    CCF Myectomy Club: January 16, 2006

                    Comment


                    • #11
                      Ah Mark, that so stinks! I don't know what else to say. I hope you get good news in the morning, but not if it means putting you at further risk of infection. And for what it's worth, I don't think many others would have thought of it either, so don't beat yourself up. The future male myectomites can thank-you for being a trailblazer.
                      Looking forward to hearing more tomorrow---
                      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


                      • #12
                        Mark,

                        Go rash go! (for whatever its worth!)

                        Rhoda

                        Comment


                        • #13
                          Greetings to All:

                          I met with Dr. Smedira yesterday afternoon and, as I suspected, my myectomy surgery was postponed due to the razor burn like rash that appeared on my chest. I was mad at myself for being so stupid, but luckily, they were able to fit me in Dr. Smedira's schedule again this coming Monday. Thus, my new surgery date will now be January 16th. I got back home again late last night. I guess the bright side is that I get to spend a few more days with my kids before I have to leave again for Cleveland on Sunday.

                          As if I weren't disappointed enough due to my surgery deferral, I also was unable to meet with Scott Herrmeyer (scottonbike) while I was in Cleveland. He had a myectomy performed at CCF by Dr. Lightle on January 3rd. Even though we really only had a few small windows of opportunity, but were both willing to do whatever necessary to make it happen.

                          On Monday (9th) I was testing at CCF all day long but was planning on meeting Scott after I was done for the day. However, during my consultation with Dr. Lever, I mentioned to him that I was getting ready to visit Scott. He remembered Scott's case and thought it wouldn't be wise for me to be anywhere near Scott until the issues with his fever were resolved to his satisfaction.

                          Yesterday, I was scheduled to meet with Dr. Smedira at 10:00 am to determine whether or not they could proceed with my surgery as planned this morning. Unfortunately, Dr. Smedira was held up with surgery and couldn't see me until 12:00pm noon yesterday. Thus, by the time my surgery was officially cancelled, we only had about 1 hour to get back to the motel and checkout before I would be charged for another night's stay.

                          Scott had told me on Monday that he should have found out by 9:00am Tuesday whether or not he would be discharged. But, when my wife and I never heard from him by around 1:00pm we both just thought that his fever had prevented him from being discharged. So, we began the 350 mile drive home to Lexington. We were only about 80 miles into our drive home when Scott called to tell me he was officially fever-free and about to be discharged. So, at that point, there would have been no reason for anybody at CCF to keep us from meeting each other, but my wife had already made it almost to Columbus when we heard from him. Talk about frustrating day....we were THAT close to getting a chance to meet.

                          I cannot stress to you enough how important this board has been to me over the last two years. But, in actuality, it is not the board--but the people. It's one thing to develop relationships on line with people, but it is an entirely different thing when these people touch your lives in very personal ways.

                          Sometimes, it's hard for family memebers and other non-patients to really understand what it is that I am saying. But just know that it was pretty important for me to "put a face with a name" so to speak. I think it was also the same for Scott. Neither of us had ever met anybody with HOCM or who had a myectomy performed. It's just unfortunate that it didn't work out for us.

                          So the way I choose to look at it is this: Where one door closes, another one will usually open. So, as I type this post, I am most grateful that Theresa (THW) and I will both be at CCF during the same time frame. We will both arrive in Cleveland on the 15th--the only difference is that she has to do a heart cath on the 16th; while I am scheduled for the myectomy. Her myectomy, if I recall, will be done on the 19th. So, if it weren't for my shaving mishap, I probably would have been hard pressed to meet Theresa. Now, it looks like I'll only be about three days ahead of her surgery schedule!

                          See, good fortune really DOES come in strange disguises. Thanks again to everyone who has been so wonderful with their support. I hope that I can very soon begin to offer the same kinds of experiences to this board that have been so helpful to me over the last two years. Well, here's my first bit of advice for you pre-myectomy gents:

                          PUT THE RAZOR DOWN! STEP AWAY FROM THE RAZOR, PLEASE!

                          See ya-

                          Mark
                          Lexington, KY
                          Age: 38
                          Wonderful wife of eleven years (Gena) with three great kids (Lindsey, Conner and Laney)!
                          HOCM diagnosis: January 2004
                          CCF Myectomy Club: January 16, 2006

                          Comment


                          • #14
                            Mark,

                            Sorry to hear you had to be rescheduled for next week.

                            As for putting a face with the name, I think we all know what you're saying. Last June I attended the HCMA annual meeting in NJ and got to meet quite a few of the people here on the message board (many who were a great help to me prior to my surgery).

                            Better luck next week,
                            Stuart
                            Cleveland Myectomy Club
                            August 31, 2004

                            Comment


                            • #15
                              As they say everything happens for a reason... so you will have to wait just a little longer. Best wishes for a wonderful, uneventful myectomy...really soon!
                              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

                              Working...
                              X