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.

Got Some Questions

Collapse

About the Author

Collapse

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

  • Got Some Questions

    Hi guys,
    I have a number of ‘situations’ and I don’t know which ones are HCM related and/or I don’t know what to do about them. I know a few of you are RN’s, but I’d be happy to receive comments from anybody who might have some ideas on them.

    This happened again today, so while it’s on my mind let me ask;
    From time to time I get a short sharp pain in my heart that actually feels more like a muscle spasm then anything else, but the pain is sharp enough to stop me while walking. It only lasts a second or two, and I’m back in business. Any clues?

    After lunch I generally would like nothing better then taking a nap, and aside from first thing in the morning I usually have to make a conscious effort to start walking. My legs get stiff and there is some degree of pain involved for the rest of the day. Is this HCM, arthritis or what? And what can I do about it? A few years ago, spaced out, I got cortisone shots for my bursitis, but by the third shot the effects wore off. My shoulders still are stiff and occasionally sore, and so is my left thumb. (I’m a lefty.)

    While I’ve got your ear, this one is probably addressed to the nurses, or somebody else whose been there. This one has my attention for sure. First a little background. I have diabetes as a direct result of my familial hyperlipidemia. For the lipidemia my doctor now has me on 80 mg of Lipitor and 160 mg of Tricor. I just switched from Zocor to Lipitor, so we will have to see how effective that is – but I don’t expect much.
    While in the cholesterol clinic they kept testing me for diabetes. I said, “Why do you keep testing me for diabetes – I don’t have it.” The response was – “You will!” They were oh so right. About six years ago I became a diabetic. At first it was sort of controlled with Glyburide, ten milligrams each dose, before breakfast and dinner. A few months ago my endocrinologist started a shot of Lantus – 5 units at bedtime. This is a long lasting insulin. He told me I could keep bumping it up until it had a good effect. The next time I saw him I was up to 30 units a shot. He then added Humalog – a fast acting insulin – 5 units each before lunch and dinner. He again indicated that this was probably not enough, and I was to bump up both insulin types until I gained control. For the last couple of days I’ve been taking the two shot of Humalog at 18 units each, and the shot of Lantus had grown to 40 units. Yesterday my blood sugar readings were – before breakfast 232 (had a bowl of cereal) – before lunch 365 – before dinner 278. I did not take a reading before bed, but the day before it was 321. Tomorrow I start two shots of Humalog – 20 units each, and a shot of Lantus at 45 units. That’s 85 units of insulin a day, and I’m still posting outrageous blood sugar numbers. Anybody have any idea where this merry-go-round is going?

    I’m not sure where my kidney function numbers have gotten to, but I suspect with the high lipids and blood sugar numbers they have to be effected too. The rest of the problems are piddling in nature. Would very happily accept any and all comments.
    Burt

  • #2
    Re: Got Some Questions

    Burton--

    Sorry to hear you have these difficulties.

    I am also diabetic and taking about the same amount of insulin you are, but my numbers are reasonably good. My last Hemogloblin A1c was 7.0.

    Are you seeing a diabetes specialist? It seems that you need the highest level of expert help at this point. I asked previously, and apparently, there is virtually no upper limit to how much insulin we can use. Insulin resistance creates the need for such high numbers---

    Find an endochronologist with a sub-specialty in diabetes to help you-----

    Comment


    • #3
      Re: Got Some Questions

      I’m using a professor of endocrinology at the University Of Nevada School Of Medicine, and as far as I can tell, he’s as good as they get. I’m very pleased with him. The problem is that as of tomorrow morning I will be taking 85 units of insulin a day, and my numbers will probably still be in the 250 to 400 range. It’s kind of spooky. I can see 100 units a day just around the corner. At this rate I’ll soon be taking injections with a garden hose.

      My glycohemoglobin was 9.5 in January, and all this insulin was only able to bring it down to 8.5 in March, and I’m afraid June’s number will again be higher. According to my chart, 6 – 7 is near normal / excellent control and anything over 8 is action required for better control.

      I don’t know how much you are aware of the lipid numbers, but at April 20th, my Cholesterol was down to 301, Triglycerides 598, my HDL has climbed nicely to 48 (used to run in the 30s), and the VLDL was 120 (four times the maximum normal reading.) A number of years ago I had to come off the lipid meds because of very high liver function numbers. At that time my cholesterol climbed to 825 and triglycerides to 2080.

      Any other comments on this, or my initial posting questions, would be greatly appreciated. Frankly, I think all these problems are stymied trying to figure out which one will get the honor of killing me. My doctor said that people with familial hyperlipidemia usually die in their fifties. Well, I’ll soon be 72 – guess I dodged that bullet already.

      Thanks for your time,
      Burt

      Comment


      • #4
        Re: Got Some Questions

        Burt -- I am not sure about the diabetic issues.
        RE the pain in your chest - it could be a number of things and I too have had such chest pains. If it happens again, please sit down and give yourself a few minutes to rest. Keep a record of how often it happens and discuss it with your doctor.

        Be well,
        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


        • #5
          Re: Got Some Questions

          Burt I too get the chest pain. It is extreme but only lasts for a couple seconds. I have no idea what it is, but I have had it for about 10 yrs.

          Sorry I can't answer your other questions, you have helped me out so much.

          Pam
          It's not what you gather, but what you scatter that tells what kind of life you have lived.

          Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.

          Comment


          • #6
            Re: Got Some Questions

            Burt, My first thought when I started reading your post was, "I wonder if he is taking any lipid-lowering meds?" As you continued writing, you tell us you are. I am suspicious of the muscle soreness/stiffness. Your doctor needs to be made aware of this, sooner rather than later. Some of these meds can affect the muscles in addition to liver, kidneys, blood sugar, etc. Call someone Monday and describe the same symptoms. There are blood tests to follow liver and kidney function and also to check for muscle involvement due to an un-intended effect of the meds. It's not unusual to have to change lipid-lowering (statins) meds, and it is not unusual for the problem to occur after you've been on the med for a while. Most people think if they started out OK and no probs with that med for a while, they won't have a prob. That's not true, it can happen later. The muscle soreness, stiffness, aching are pretty classic. It may not be your problem, but it needs to be evaluated. Certain meds will also change cause your blood sugar to increase or insulin to be less available/effective for some people. Are you taking meds for the muscle aches - non-steroidals, or such? Let your doc know about all OTC meds as well as prescription meds and the prob with the blood sugar. You may have an interaction/interference of meds. As for the sudden, sharp chest pain, I can't really offer you much. Talk to your doc about that also, it could be a spasm of a blood vessel, muscle spasm, or who knows what. I'm just glad it resolves quickly for you. Please call your doc Monday am and keep us posted. Linda

            Comment


            • #7
              Re: Got Some Questions

              Hey Linda,
              Thanks for the post. It just never dawned on me that the aches and pains may be drug related – and I know it can happen.

              As of 4/20 my liver function tests are normal – AST(SGOT) 38 – ALT(SGPT) 41. I had a big problem with this when I was on Lopid, but when I switched to Tricor, the problem went away. The Alk. Phosphatase and Bilirubin set were normal. My BUN was barely normal for a change at 29 (in March it was 34), and the creatinin level was at 2.2. The rest of the renal function panel was within normal limits.

              At 3/26 the CBC w/platelet was basically normal with the RBC, Hemoglobin and Hematocrit marginally low – but normal for me. The Urinalysis showed Proteins, WBC and RBC high. Haven’t had my kidney function test run for a bit, but the last reading I believe was 2.5 or 2.7.

              I’ve had pains on and off for years. In the past I had cortisone shots for bursitis and in my lower back, but that was over ten years ago. I have taken no other drugs for muscle pain as far as I can recall. With the drug load I’m on, I’m quite reluctant to add anything – although on rare occasions I will snag a small piece of chocolate. (Nobody’s perfect.)

              Now comes the hard part – talking with my doctor about it. I would have to have some idea of which drug or drug combination was causing the problem to know who to talk to. I have my PCP – great with day to day problems and making referrals, but somewhat untrained in the specialties – as you would expect. My cardiologist is handling my cardiac problems, HCM and hyperlipidemia – as well as they can be treated. My endocrinologist is handling my diabetes with Insulin and Glyburide tablets, which I’ve been on for years. My Nephrologist basically only complains about my food intake, and warns against any salt. If he had his way I would eat only raw vegetables or ones cooked with no salt at all. I guess I’ll just have to talk to each of them when I see them, and hope it rings a bell with somebody.

              I always supply each doctor with a current list and dosages of all my drugs – they are;
              Lipids – Tricor and Lipitor (just switched from Tricor - Zocor)
              Diabetes – Glyburide – Lantus Insulin – Humalog Insulin
              Cardiac – Verapamil – Atenolol – Lasix – Potassium – Folic Acid – and Nitro-Quick in an emergency only.
              OTC – Aspirin 325 mg – Vitamins C and E, Centrum Silver (Equivalent), and Grape Seed Extract.
              With all that, I’m still able to stuff in plenty of food – although I do watch what I eat – pretty much.

              Thanks again for the post – it woke me up. Anybody have any other ideas?
              Burt

              Comment


              • #8
                Re: Got Some Questions

                Burton,

                Back to the diabetes--- These Blood glucose numbers are way too high. Have you considered limiting your carb intake as another approach to getting them under control? I've found that I need striking less insulin on days when when I barely eat any carbs and exercise fairly vigorously.

                Try eating just one slice of bread for breakfast and one slice forlunch and have a dinner of protein and veggies, see if that doesn't lessen that Blood glucose. If that doesn't work, then you may just have to get more aggressive on the insulin injections.

                Have you been to a diabetes educator lately? Medicare will cover the cost----

                Comment


                • #9
                  Re: Got Some Questions

                  Hi Liona,
                  I have been told to strictly limit my proteins because of my kidneys. Strictly limit my carbohydrates because of my diabetes, and strictly limit my fats because of my hyperlipidemia. I was also told to eat every four hours to avoid sugar highs and lows.

                  Each of the doctors preached their own gospel every time I saw them until I gave up and saw a dietitian who specialized on problem diets. Together we worked out a compromise diet that tried not to offend any problem to much. I follow it as best I can, but frankly it’s too rigid to live by. The dietitian agreed that it was so, and I should just try to stay as close to it as I could. Some of the highlights are; proteins – 4 ounces a day (the non fat milk on a bowl of cereal is two ounces of that already.) Carbohydrates – two slices of bread, one in the morning and one at supper. (The morning bowl of cereal is at least one slice.) Fats; (Olive oil – for cooking only.) Fruits and vegetables – all I want except for a long list to avoid like peas and corn, (but I can have all the popcorn I want),

                  We get into crazy situations like avoiding a long list of vegetables that contain Potassium because of my kidneys, but then I take a potassium pill because of the diuretic. I’ve gone around and around with this so much I’m sure I wore a ring in the carpet. It would have been worse, except I can’t walk that much. And without knowing one word of what the dietitian said, the doctors now say I should ignore her advice and follow theirs. Aarrrgg!

                  I think I’m about to giggle. Reminds me of the story of a guy who went to his doctor and was told if he didn’t go on a diet in six months he would be dead. Sure enough, in six months to the day, the doctor ran him down in the parking lot.

                  Hey guys, I appreciated all your comments. It has done a lot to clear the air and wake me up to a few things I had missed or forgotten.
                  Burt

                  Comment


                  • #10
                    Re: Got Some Questions

                    Burton,

                    Sorry that you are dealing with so many limitations. I know you are very limited in how much activity you can do, so I hoped that limiting carbs might help. In a previous post in this thread you had stated that you eat a fair amount.

                    Given all these constraints, I'm surprised that your specialist Doctor doesn't push you higher on your insulin shots. My Dr. said he has one woman patient who takes 800 units a day! You are a far piece from these huge numbers, so take heart!

                    Comment


                    • #11
                      Re: Got Some Questions

                      Thanks Liona,
                      Had a good day today. I’m now on 85 units a day, but my numbers were down under 300 – so far 225, 282, 202 before each meal. Haven’t done my bedtime reading and shot yet, but we had dinner at a salad bar, so I have hopes of another good reading.

                      My only problems were walking and occasional chest tightness. We had to walk out of a Brahms concert this afternoon because my wife had another seizure, but thankfully it was only a teeny tiny one.

                      Unless I call him I won’t see my endo until June 28th. I believe he will be on vacation for July and August (between semesters) and I wanted to straddle those months closely, but I’m toying with the idea of calling him when or if I hit 100 units per day. I see a small glimmer of hope with today’s numbers, so we’ll see. When I do see him I will ask if any of the drugs I’m on could be making me so insulin resistant.

                      When I see my cardio I will ask him if any of the medications could be causing all these bodily aches and pains, or inhibiting my ability to walk. Unless I call him I won’t see him again until July 13th. We just changed the cholesterol medications and we wanted to give it some time before taking the raft of blood tests that precede an office visit.

                      Shirley (my wife) and I just went through a few months crowded with doctor visits and we were so looking forward to a month or two with time off for good behavior – so three weeks ago my wife falls and cracks her head on a stone floor. She saw her PCP who said she had a big bump, but the scab was healing well. To play it safe she ordered a CT scan. Shirley called her neurologist who is so afraid of a lawsuit (even when Shirley repeatedly assured him that she had no intention of suing anybody) that he didn’t want to see her. Finally he condescended to see her if she insisted – in two months – but under no circumstances would he discuss her seizure or fall. I have no idea what he planned on discussing – maybe the latest fashions – but we’re now in the hassle/process of getting a new neurologist for her. (But that’s another long story.)

                      Anyway, I again have a plan of action in mind and do not feel anywhere near as confused as I did before. I want to thank you, and all my friends, for helping me figure things out.
                      Burt

                      Comment


                      • #12
                        Re: Got Some Questions

                        Well folks,
                        I had some more disheartening news. When I hit 100 units of Insulin a day I thought it best to check in with my endocrinologist. His assistant ordered a bunch of blood tests and made an appointment for me to see the doctor tomorrow. He called this morning, told me he had a cancellation and so I saw him this afternoon.

                        On the blood test results – the creatinin was at my base line of 2.5, most of the metabolic profile was normal (I’ll cover the exceptions), and that’s the end of the good news.

                        On the Comprehensive Metabolic Panel my fasting glucose was 196 (norm 65-99), BUN 37 (norm 7-30), and Creatinin 2.5 (norm 0.5-1.5).

                        On the Lipid Panel – Cholesterol 324 (norm 140-200), Triglycerides 948 (norm 25-150), HDL 40 (norm 40-60) (These are the good guys), Chol/HDL ratio 8.10 (norm 2.00-4.50). With the Triglycerides over 400 the LDL could not be calculated, and would require direct measurement. Looks like the change in medication for this has not worked.

                        Now we come to the Diabetes problem. In the past two months the Glycohemoglobin (A1c) has gone from 8.5 to 10.1 (7 is good, over 8 requires better control). This is while continuing the Glyburide 20 mg, and increasing the insulin to 100 units / day. By the way, I am again toting a load of water.

                        Today, before breakfast my glucometer showed 197 (80-120 is the good range, to 140 is acceptable). I took ten units of Humalog fast acting insulin and had a bowl of cold cereal with non-fat milk. Before lunch my reading was 350. I took 20 units of insulin and had a salad for lunch – with no dressing.

                        For the next month I’ll also be monitoring my glucose level two hours after dinner to see if the insulin is even temporarily bringing the levels down. (I don’t think so.) My next appointment with him is the end of June. He is a professor of endocrinology, with a specialty in diabetes, and I think he’s great, but I think I have him stumped. The insulin is like throwing gasoline on a fire. We talked about a pump, but he wouldn’t like to see me have to mess with it if there is another way out.

                        This morning I felt good, but after lunch my chest was again tight, my left elbow again hurt (beside the normal background aches and pains), I had SOB and my legs were a bit rubbery. So tell me, what’s your guess on what’s going to get me first? Maybe I should run a lottery – you think?
                        Burt

                        Comment


                        • #13
                          Re: Got Some Questions

                          Bert,

                          There is no way I am going to touch all this. You sound like a walking disaster area. But I do have a comment on the insulin pump. I know a couple of people who have them and find them to be absolutely wonderful. They both had a hard time getting insurance co's to apprive them, but eventually did, in one case by threatening to call the state insurance commission. (Amazing! They were approved the same day they called and asked for a form to send to the insurance commission.) So, I would push the doc for one if he does not come up with a better idea.

                          Meanwhile, I'll be praying for wisdom for you and the docs and improved health for you.

                          Rhoda

                          Comment


                          • #14
                            Re: Got Some Questions

                            Thanks Rhoda,
                            I really don’t know if a pump is the answer. My best guess at this time is that insulin does no good with me, and may in fact be exacerbating the issue. That’s why he wants me to check my glucose level two hours after eating – to see if the insulin is even temporarily driving down the sugar levels.

                            I’ve done a little research this evening and the Lasix may be interfering with it – plus maybe some other drugs. Another research project.

                            I was IM-ing with Mary earlier, and she thinks the lottery is a bad idea. I guess there’s no way I’m going to die rich. Pooh.

                            Tell me Rhoda, how are you doing with that elephant ear fungus? (Did you really think it was from an elephant?) Won’t be long now before you come back to the states and get patched up proper. Do you have any plans of returning to China after the summer? It must be extraordinarily gratifying work. Stay well.
                            Burt

                            Comment


                            • #15
                              Re: Got Some Questions

                              Hi, Bert,

                              About the elephant ear fungus, yes, I just ate some for lunch. It is actually the same as wood ear fungus, just a different name. I ate it (don't laugh too hard) mixed with Greek style green beans. I made Greek food for some students the other day and decided that the green beans and tomatoes would mix well with ear fungus. BTW - it did! I suspect that anything with much flavor will do. I eat it with a scrambled egg for breakfast.

                              Yes, we definitely hope to return to China. My husband has told the university that he will be back here in the fall, if they want. We told them that I might or might not be able to return in the fall. So far we have not heard their preference, but someone in the international office said not to worry about it, so we are trying to relax and wait. Dr. Gilligan told me that I could travel a month after getting the pacemaker, but he also said that maybe I could set a goal of returning to China in 2005. My husband and I have never been separated for more than a few days in nearly 32 years of marriage, so if he comes back without me, there will be a great motive for me to get well enough to come back! We both have PhD's in the sciences, so we had to make the choice of whether we would seek positions separately and advance our careers or whether one of us would follow the other. We both decided that our marriage was more important than our career, so we chose the latter. So, for us to offer to separate at this difficult time on our lives is a pretty good indication of how committed we are to teaching here, I think.

                              Get well!
                              Rhoda

                              Comment

                              Today's Birthdays

                              Collapse

                              Working...
                              X