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Laoshur Find out more about Laoshur
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  • Vacation time

    Hi, all,

    I am not asking for advice here, just asking for prayers and thoughts. Today (Oct 1) is the 55th anniversary of the founding of the People's Republic of China. As such it begins a week-long holiday for virtually everyone in the nation (except those people in sales and service industries). So, the university has arranged a three day trip to Shanxi Province for the foreign teachers starting Sunday morning. The trip involves the Yungang Grottoes, temples and statues cut into the side of a cliff and Wutai Mountain. I asked how much climbing there would be and after some discussion decided that I could go as long as I could stay with the bus if there was too much climbing. Well, after I agreed to go and the reservations were made, I learned that the university had been hoping I would decide not to go because they think it is too strenuous for me.

    I find that the pacing has helped me to have a little more endurance and I can walk slightly faster without feeling out of breath. But climbing is exhausting and walking is variable. So, remember me this coming week.

    Rhoda

  • #2
    Re: Vacation time

    Rhoda

    Please have a good times...but do be careful and i will keep you 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


    • #3
      Re: Vacation time

      Rhoda

      I will include you in my nightly prayers for a safe and enjoyable trip. Let us know how it all worked out.
      Esther

      Comment


      • #4
        Re: Vacation time

        Rhoda,
        What a fantastic opportunity. I have seen some pictures of the carvings, and I envy you the trip. Youíre wise enough to not push yourself to the point where you do yourself harm, so I will not bring the subject up.

        Fifty-five years Ė My goodness, where has the time gone? I remember when they started Ė I was in High School.

        Enjoy the trip and your mini-vacation,
        Burt

        Comment


        • #5
          Re: Vacation time

          Rhoda ,
          Have a safe and enlightening trip. What an opportunity!
          Prayers , 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

          Comment


          • #6
            Re: Vacation time

            Rhoda ,
            Have a safe and enlightening trip. What an opportunity!
            Prayers , 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

            Comment


            • #7
              Re: Vacation time

              Hi, all,

              Thanks for the thoughts and prayers. The weather was great, the scenery spectacular, the views of Chinese country life from the bus amazing, the guide incredibly knowledgeable about the places we saw - especially the Bhuddist temples, etc. We saw several sites that were made in AD 400-500. It was almost screamingly funny the dismissive way the guide talked about "recent" additions or repairs - recent being defined as 1600!

              The down side was that I did not do well on virtually any level - especially uphill. For the first time I was definitely able to connect the pain below my heart with activity. It would start when I went uphill for more than about 5 steps. Then it would subside when I stopped. But, after awhile, it would settle into hurting whenever I even took a couple of steps. The first night it even kept me awake for a couple of hours, although in the past it had always stopped immediately upon lying down. I also had chest pain as well as radiating back pain and severe sob. I also had lots of fluid accumulation. It was and is so bad that at times I could not climb down steps because I could not bend my ankles. My feet, lets, hands, arms, and face are all badly swollen. The only thing that was good was that I had no problem with arrhythmias. My severe arthritis complicated things further.

              So, I missed getting to go into the Hanging Temple (50 meters above the valley floor, but originally built 100 m above 1500 years ago to escape from floods) and several other places that in the past nothing would have kept me away from. But, I got to see lots and would not have missed it for the world. Yes, I probably overdid it, but I really did not do much climbing (it was impossible, so ...) or other risky things.

              The worst thing is that I feel sobered as to the future. It seems clear to me that the pacing is not a sufficient answer. I know that many of you do not think much of that method, but hope springs eternal.

              Thanks again. If you have any advice, I'll take it now.

              Rhoda

              Comment


              • #8
                Re: Vacation time

                Sounds like a vacation of a lifetime!! Wish I could have been there too. As far as what else you can do, I don't have any answers at all. Sorry. I will say that I'm praying for you, that you can at least feel decent.

                Reenie
                Reenie

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

                Comment


                • #9
                  Re: Vacation time

                  Hi Rhoda,
                  Iím very happy that you went on the trip and saw all you did, but also sorry that you were prevented from doing everything you wanted to do.

                  I know about the discomfort with the swelling in the legs, and mostly ankles and feet, and being Ďpudgyí all over. Iíve had it for months now, and so far none of my doctors has laid claim to it. The cardiologists claim it is not cardiac related, the endocrinologist says it is not diabetes related, and that leaves only the nephrologists Ė I visit him this month. I expect he will also decline responsibility.

                  Personally I think it is a reaction to all the degenerative arthritis Iíve picked up over the years, but Iím not yet ready to add yet another specialist to my list Ė at least not until I cut down the number of cardiologistís Iím seeing. Right now itís three.

                  Anyway, I do hope you recover quickly from the effects of the trip, and enjoy your students. How are things going this semester teaching a different subject? It must seem strange. Shore would like to hear how your doing on that score.

                  Take care, and I guess you can put your mountain climbing gear away for a spell now.
                  Burt

                  Comment


                  • #10
                    Re: Vacation time

                    Rhoda-

                    I'm so sorry you sufferred so, during your trip! I know how awful that can be, especially when others see you in pain & want to help, but don't really have good advice.
                    I too have been plagued with huge fluid retention & sob, prior to my myectomy. Since the myectomy I still take LARGE does of diuretics, but seem to finally have it under control. Things improved for me, when I switched from lasix to bumex-perhaps a new diuretic?
                    I don't remember why you choose pacing rather than a myectomy-refresh my memory.
                    I wish I had some ideas that could help you, I wish someone did. Life certianly pales when you are sufferring all/most of the time! I relate to this personally.
                    Stay strong-keep searching for answers.
                    RONNIE

                    Comment


                    • #11
                      Re: Vacation time

                      Hi, Burt and Ronnie,

                      I apologize for being slow to answer your questions. Unfortunately, people have to pay for vacations here by working Saturday and Sunday of either the week before or the week after, so I have been teaching classes constantly the past few days. I have a short break today, so here goes.

                      Ronnie, thanks for your concern. You are right. It is discouraging to be in pain and know that you look fine to everyone else. (Howver, they realize I am not fine when they see and hear me walk.) I get so tired of people telling me how well I look, when I feel that it is rapidly getting to where my life is defined by what is hurting at the moment.

                      I am still struggling with chf. I wheeze in bed and am swollen out. (Reminds me of my father's joke about being "Bad in bed and worse up!" I am glad I never figured out what that meant until I was an adult. ) I suspect that a different diuretic might help, but I guess I have to get by until January when I get back to the US. So, I plan to try carefully doubling the one I have, maybe trying alternative days. That does help and is what I have been told to do in the past.

                      You asked about why I did not opt for a myectomy. The answer is that I was told that they needed to check out the pacing as a solution first. So, I was not really given an alternative.

                      Burt, you mentioned that no doctor claimed your fluid retention. I am puzzled by that. I had already sort of figured this out from what I had read, but Dr. Gilligan confirmed that HCM has a different form of chf that is not as deadly as typical chf, but is still a problem. He claimed mine. I am sure that this is a part of what is bothering me now, because my abdomen is tight, everything is swollen, and, as I said above, I wheeze when lying down even though my asthma is not bothering me.

                      As far as teaching English instead of Ecology, well, actually we have been doing some of this ever since we came to China. It was part of the deal. The university has money to hire English teachers, but not really to hire people in the sciences. So, as a compromize, they agreed to hire us to do both. However, this is the first time we have ever taught just English. A couple of weeks ago I got a call from a somewhat repentant department asking if I would go ahead and teach an Ecology course. But, I said, "No, not until next semester." since I have a very heavy schedule of English classes. The International Office advised me to refuse to do this. We actually enjoy our English teaching, but we have too many classes and too many preparations this semester!

                      Thanks to everyone for your help and concern!
                      Rhoda

                      Comment


                      • #12
                        Re: Vacation time

                        Hi Rhoda,
                        About your teaching English this semester, and English and Ecology both the other semesterís Ė I think itís entirely understandable that they wish to maximize their investment in having you and your husband in-country. Iím sure this applies to all extra-nationals, but especially Americans.

                        Really good teachers are never paid what they are worth, but they derive so much pleasure out of their work they would consider no other occupation. I have known a few teachers (and I do not use the term loosely) who have been financially driven to commercial endeavors, but they were never as happy as when they were in the classroom.

                        About my water retention, My cardiologist claims itís not his, and I do not have CHF based on some blood testing that was done, - but he did hear some crackling at the base of my right lung the last time I saw him. My endocrinologist claimed it was not his based on his observations of me, and the types of insulin Iím on. (I am up to 205 units a day currently, and still get most readings in the 150 to 250 range.) Incidentally, this doctor is a professor of endocrinology at the Nevada School of Medicine, and I rate him very highly. Unfortunately he will be retiring some time between the end of the year and February. I will see him only once more Ė and thatís a problem for next year. There is medication that would make me more sensitive to the insulin, but he wonít prescribe it as it makes your legs and feet swell Ė wonderful.

                        I have an appointment with my nephrologists on the 25th, and I have a strong suspicion that he will not claim the condition either. I am now getting what feels like cramps in the middle of the ball of my left foot and the under side of the small toes on my right foot. I donít know what thatís all about, but walking aggravates it and staying off my feet calms it down. By the end of the day my legs from the knees down get so swollen my skin gets so tight it hurts and my ankles feel like Iím wearing leather spats.

                        By the way Rhoda, would they consider giving you a stool so you could continue to teach while in a semi-seated position? It might help your back. I know standing just kills mine.
                        Burt

                        Comment


                        • #13
                          Re: Vacation time

                          Rhoda,
                          Hello. I feel I need to comment on the type of CHF. It is true, the CHF that we HCMers get is a little different , but I don't want you or anyone else to get any false sense of assurance that care , safety and much precaution can be cast into the wind. I know you take as good of care of yourself as you can but you need to be equally as vigilant regarding overtaxing the hyperdynamic heart with CHF that has diastolic dysfunction from a stiff left ventricle as one does with the CHF related to heart failure from a weakened heart . By this I refer to our unknowing as to when any of our hearts could reach the point where full right and left failure could be so limiting and the fluid build up so great that the heart just simply fails.

                          I never like to scare people but ,I will share this sad story that occured recently when my daughter was in the ER doing her senior clinical rotation. She told me how this 55 y/o woman came in having SOB, swelling and presenting with CHF symptoms. None of the medical personnel were overly concerned. Sarah said she was a generally a well person with no history of heart problems, she was short , a bit overweight and the plan was to ship her up to telemetry for observation, after she had a cat scan.

                          Sarah said she returned promptly to the ER as she became more SOB as they put her flat and in the tube. She said she became very SOB and began to shout," help me I can't get enough air." Sarah said the woman arrested. They cardioverted her 5 times and were unable to save her. She said all the ER staff were very shook and shocked as this woman was presenting as a person who seemed to be compensating medically, fairly well initially. It appeared that some monitoring and possible diuretics may be in order and no one expected this would occur. By the way this ER sees about 60, 000 people a year and Sarah told me they are rated very proficient as a teaching hospital and trauma center.

                          It was very traumatizing to Sarah as she has been there with me many times when my heart was compensating. She also had to witness the shock and sadness of this womens children as they learned of their mothers death and here them state to her, "this was not supposed to happen."

                          I don't knpw the absolute cause of death but, the summation is that one thing lead to another very quickly and this womens life was over.

                          Be carefull Rhoda and everyone else. Taking diuretics is not always enough. Allowing our bodies time to maximize effect from them before jetting out into our busy lives is something very few of us do.

                          Feet up , cool and calm and recumbent for a period of time after taking them will help to get the fluid moving in the right direction ; out . If this is not working then it is time to look at a different med or downscaling our activities.
                          Best to all .
                          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

                          Comment


                          • #14
                            Re: Vacation time

                            Pam,
                            I find your story somewhat disconcerting, to say the least. I usually take my morning pills (including the lasix - 80 mg) when I get up at around six oíclock, or a little before. I then spent about two hours at the computer before doing much of anything else. My legs, although still swollen, are as deflated as they ever get Ė these last few months.

                            The doctor would prefer it if I were to take one lasix when I got up, and the other around noon (six hours after the first) but I find that completely undoable. I am far busier now then when I was working, except for the three years after I retired when I ran my own business. That was followed by a number of years doing contracting work, before I really retired, - and now Iím having so much fun that I havenít got time to lay around and do nothing.

                            My arthritis and other conditions are such that I donít know how much longer Iím going to be able to run around, so I take full advantage of every day I can. I have to admit that once in a while I do get to sit in my lounge chair with my feet up and watch TV, but I usually fall asleep for about a half hour then get up and do something, as most TV shows bore me. With the latest change in my meds, I find I am much more symptomatic then before, but it hasnít slowed me down. I talk to the doctor again tomorrow, and I expect we will try something else for the next week.

                            Anyway, I think I will be a bit more conscious of myself from now on, and not push beyond my limits, as meager as they are.
                            Burt

                            PS Ė If that woman felt so bad with SOB, and the tech continued the testing - as they usually do, - she should have started moving around as much as she was able. That would have forced the tech to end the test and then hopefully she could have gotten the attention she needed. I guess we should all keep that in mind if we find ourselves in a similar situation. (These things are much easier to think of when we are not caught up in the moment.)
                            Burt

                            Comment

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