Hi, from Beijing

[Laoshur]

Hi, all,

I apologize for writing so little lately, but have just felt like I have little to add. I am trying to keep up with most of the postings. Hopefully I will get over my HCM funk soon and will feel like posting again.

We came back to Beijing arriving Saturday nite, so I am suffering from jet lag as well as HCM. Several people have asked about flying, so I will give my perspective. I find that I do not have a lot of trouble except in ascent and descent, and then only at the beginning or end of the steep part. Apparently, the switchover in cabin pressures is hard for my heart to take. I had pretty severe heart pain during one descent (the last one into Beijing), but was able to get through it by reminding myself to breathe slowly and deeply and that this would be short-lived. However, I am sure that the trip is hard on my heart because I always have a lot of fluid problems afterwards, and this time is no exception. I suspect that this, like most HCM things, would be quite different from person to person.

I am somewhat discouraged right now as I felt sure I would faint tonight if I did not sit down after walking through a store. I was very glad that I found a place to sit and sat there for 15 minutes or so while Ed looked for some wire. I am sure that I was an object of curiosity, but did not care. I am pretty used to being a spectacle here!

Thanks for listening!
Rhoda

[Linda]

Rhoda, I hope you have a few days to rest up before you start teaching again. I trust you enjoyed your time here and lots of good visits with family and friends. Take care, Linda

[shirleymahoney]

Rhoda

Glad to see you made it back safely and it is ok to get down from time to time you just can't stay that way ok, I have been very down lately too but i think I'm live through it, I'm trying to lose weight and it gets aggravating, because i don't know how much is fluid and how much is fat, doc said it was going to be hard for me because i can't exercise, i feel like doing it anyway my weight is not good for me either, i mean just start walking to see if i can do it, well i hope you are getting back on your feet and please rest if you need it

Shirley

[Reenie]

I know how you feel about being full of fluid when traveling for a long distance. When I fly overeas I have swelling in my legs and feet too and I always try to remember to wear loose sneakers. I sure hope you feel better once you get over the jetlag.

Reenie

[Burton Borrok]

Hi Rhoda,
Let’s see if I got this right – after you got back to China your husband went out looking for wire (wire?), while you sat down and made a spectacle of yourself. Is that about right? Boy, talk about us crazy Americans.

Actually, I’ve found when I fly – or even drive up a mountain – I am effected by the change in pressure, but only if the change in pressure is sufficiently quick. Yesterday we went out for breakfast and got back to the house about ten thirty, after which we decided to go for a drive. We wound up driving from Las Vegas to Bakersfield, California and back – 565 miles in all. On the way to Baker (about the first 90 miles) we went through two passes that are around 4,700 feet – after starting at 1,000 at home. The road is mostly a long, slow climb and I find that it does not effect me at all. There is another set of mountains you have to go through, with the Tejon Pass, before reaching Bakersfield at the southern end of California’s Imperial Valley. I did feel the climb and descent through these mountains.

When flying I also find that breathing deeply helps alley the effects of the pressure changes, and for years on long flights I take my ‘gym’ with me. That also helps a lot. My gym is in fact a roll of very stretchable plastic. It is about six inches wide and rolls up to about an inch thick. Unrolled it is seven and a half feet long. I can hook it over my foot and exercise my legs, one at a time, or I can keep my legs still and exercise my arms. I can also use it to stretch between both arms, but you have to be sitting next to somebody who doesn’t mind you doing that. On occasion I will make a loop, hook one end over my (unshod) feet and the other over my shoulders and exercise my back muscles. I find it tones up my muscles, keeps me breathing properly, and I’m in much better shape at the end of the flight – sometimes in better shape at the end then at the beginning. Of course now-a-days I can only do a minute or two at a time, with somewhat long breaks in-between.

I wonder if such a thing would also help you in your flights half way around the world.
Burt

[scottonbike]

re: Hi, from Beijing

Hi

I am just going to put my two cents worth about flying. When you are flying for a long time the air in the cabin gets to be very dry. On short hops of less then 2 hours this is usually not a problem. If you are going cross country or across an ocean you had better be drinking some water.
This is especially true of people with HCM....as Lisa would probably say Drink... Drink.... Drink

While ascending and flying at flight level, the cabin air pressure should remain about 8,000 feet or below. The reason that the airlines fly at this cabin pressure is to save on fuel and wear and tear on the fuselage. So when you ears start to pop while descinding the pilot is acclimating everyone to the local ambient pressure. If you dont do this the door will be almost impossible to open do to the pressure differential

I can't remember the name of the condition that happens if you sit on a flight for a long period of time. The problem is you don't move and the blood does not get a chance to circulate like it should. This is compounded by the fact that the cabin pressure is 8000 ft so you are not getting the amount of oxygen you would normally get. Every hour or so you need to get up and make a few laps around the airplane to get the blood moving again. This problem can be fatal.

[scottonbike]

I have too much time on my hands........Immobility encouraged thrombosis I knew I would think of it!!!!

[Pam Alexson]

Rhoda ,
You are often in my thoughts. Take it slow and I hope you will soon be feeling better. You inspire so many of us in just doing all you do.

Pam

[Laoshur]

I would welcome some input about what happened yesterday. Day before yesterday I took double the diuretics, as instructed by Dr. G because I had not been able to get rid of the excess fluid from flying and I was feeling like my lungs were filling up. It seemed to work but I still had a little fluid, so took the normal dose yesterday.

I taught class, had office hours, and took several students out for lunch. We ate a fairly light lunch and I had lots of very weak tea (the free tea in restaurants here is a lot like slightly flavored water). Afterwards my husband suggested walking across campus to the International Office to talk to our rep about several things. The walk is about 1 to 1 1/2 US city blocks. The day was cold but not bitterly so (snowed later). On the way there a student stopped us and asked us to wait while she got a type of bread she and her grandmother had made for us. I felt tired and reluctant to wait, but did so and was OK as far as I could tell. When we got to the office, the person we needed to see was not there, so I did not get to sit down to rest. Soon after we started back, I began to feel weak and somewhat faint. That quickly progressed to profuse sweating, pounding pulse in lips and chin, greying of the landscape, and sense that I was stumbling.

My husband was quite alarmed, as was I, so I sat for a few minutes on the base of a statue. When I got home, a student was waiting to see me, so I could not really rest. But after sitting for about 15 minutes and drinking two glasses of water, I felt well enough to ask Ed to get the blood pressure cuff. My bp was 80/45 at that point. Wow! What must it have been when I was feeling bad?

After an hour the student left and I went to bed. I slept for two hours, took my bp and it was 83/45. I dragged myself out of bed and taught another class. This class was about the same distance across campus as I had walked earlier, but I had no problems other than the usual shortness of breath.

So, what happened yesterday? Was it the double diuretic dropping my bp? Was it the walk in the cold? Since I have an ICD, should I just ignore such events and be thankful they can't kill me? What is your take on this?

Rhoda

[Burton Borrok]

Hi Rhoda,
Yesterday I was feeling pretty good until around three o’clock, when I went from feeling good to feeling bad as if somebody had thrown a switch. I was weak and wobbly, SOB with the slightest movement, and very tired. At lunch I had only eaten two sausages, but with a late breakfast I thought it would be quite sufficient to carry me to dinner.

We went to a local casino for dinner at around five. I turned the car over to valet parking and we walked back to the café. Even with the cane I was wobbly and short of breath. I expect the distance walked was a hundred to a hundred and fifty feet. I ordered iced tea immediately, and during the three to five minutes it took to get it I felt really crappy. I ordered Chinese – Hot & Sour soup, pot stickers and pork fried rice. They rushed the soup to me and I downed it with the fried noodles. By the time I started the pot stickers I was starting to feel better and the sweating had stopped. When the waitress came by with the rice, she mentioned that my color had returned (I hadn’t known it had left.)

Anyway, after eating we went back home and I sat down in my lounge chair to watch some TV, and promptly fell asleep for about an hour. I was wiped out. I slept through a normal night’s rest and am functioning normally all day today – except I was still weak to some degree all day today, and the effect is just starting to wear off tonight. (Again I fell asleep in front of the TV.)

I don’t know what it is, but from time to time I change in a second or two from feeling good to having problems. It’s not bad enough to go to the ER with, but it sure is an uncomfortable situation. When you get your ‘problems’ does it come upon you that way also? How about the rest of you folks? Does this sound familiar to anyone? I believe it is HOCM related, and do not think it is a diabetic reaction. They’re different.
Burt

[Pam Alexson]

Rhoda it definitely sounds very familiar to me and more possibly could be as a result of some dehydration combined with a dip in your potassium or magnesium. Your biggest clue to me was the extra diuretic that you took. Remember the balance for us HCMers between hydration and dehydration is a very fine line at times. Always be aware that dehydration for the stiff poorly relaxed, not so good at filling, left ventricle of an HCM heart will react very severely and possibly dangerously to not enough blood volume. I did not here you report that you weighed yourself prior to taking the extra dose? I used to have very similar reactions when I had to add Zaroxylin to the mix with Lasix. Now everyday at any given time , our diuresis can change . There are many, many factors that influence why one day we lose a lot on a minimal dose and not so much on another day. Be very carefull and vigilant in managing your diuretic use. Sounds very clear that you may have been ready to hit the floor. It would be a good idea if you continue to feel punky to have an electrolyte panel done.

Rhoda you need to assert yourself more and put you first. This is a time when you definitely should have retreated to the reclining position, feet up, and have that scale available. Get to know your daily weight as best you can to have a very clear picture of fluid vs dry weight. The fluid will hide in all the tissues unless you get down and quiet , feet up to get the diuretic to do it's job efficiently. Remember also , page out of Burt's book; the kidneys are under a markedly increased stress load when we are fluid laden and also when we force them to work harder by taking diuretics.

This I know was a scary episode. I am happy that worse things did not happen to you. Please be well and take it slower, it is remarkable what you do daily but I am very aware as I read that it is not an easy path you travel. I think you have a lot of decisions to make regarding your HCM and they are not easy ones. It has sounded for awhile that HCM is severely impacting your normal functioning as well as severely impeding the bigger life you would like. What is the status on a possible myectomy in your life ? You have probably noted it somewhere but, I thought I would ask again. Forgive me if I am intruding, I care.

Now Burton!!! How much sodium do you think was in that chinese soup alone????? I am sitting here shaking my finger at you.

Take Care.

Pam

[Reenie]

Rhoda, another thing that is jumping out at me is your blood sugar. If you had a light lunch then exerted yourself your sugar may have dropped. I've had episodes of this before, mostly when I was younger, but some recently. I felt eerily similar to what you describe. The sweating, shaking, and feeling of my heart pounding even though my pulse wasn't really as fast as it felt. Please keep us posted.

Reenie

[Laoshur]

Burt, I am glad that Chinese food helped, even if it did have too much sodium in it! I hope you do not have a repeat of this, just as I do not want a repeat of my experience. I am nt happy with the idea of just saying that it is caused by HCM. I want to know what about HCM causes it so that if I am doing something I can fix or prevent, I will do it. I am sure you feel the same.

Thanks, Pam, but actually I am almost certainly not a candidate for a myectomy, at least not now. It really does look to me, as well as to Dr. Gilligan, like the pacing has reduced my obstruction. So, without more data to indicate a myectomy I am not a candidate. He mentioned doing a stress echo when I come home next time, so that will yield more data.

I suspect you are correct about the dehydration. I did have my electrolytes checked when I was home and they looked OK. Dr. G said that I should check potassium if I had to start doubling the diuretics. Currently I am on very small daily doses of both Lasix and spironolactone. After yesterday's experience I think I will be very hesitant to double them again. Today I just skipped them entirely and felt much better, but my ankles are pretty badly swollen tonight. I just hope I do not need to double the diuretics to get it off again. In fact, the only reason I did was because I was sure I was getting fluid in my lungs. Students were commenting on my coughing and asking if I was taking medications for my cough. After my past few experiences with pneumonia and chf I am eager to keep the fluid out of the lungs.

Yesterday was just a bad health day all around, but ended up OK. I have been having a problem with another bout of diverticulitis and flying around the world got me off schedule with antibiotics, so yesterday morning I had more pain and problems. Also, yesterday was the last day of Spring Festival (Chinese New Year) so you are supposed to eat these special cakes. The university gave us a box of them so I cooked them last night after my evening class while the fireworks boomed around us. It was quite exciting, at least it was until I accidentally ate one that had a walnut in it. I am allergic to walnuts, so my face swelled and my throat itched. I am glad to say that a Benedryl was sufficient to solve the problem and was a nice way to end the day. Benedryl is a great help in solving jet lag! To quote Shakespeare, "All's well that ends well!"
Rhoda

[Pam Alexson]

Rhoda ,

I am glad you are feeling better today.

Pam

[Toogoofy317]

Rhoda,

I know your experience all too well and it still puzzles my cardiologist. My bp will hang around the 90-100/60-70 range and I function ok. But, many many times it has just plummeted for no reason! It feels like someone has pulled the plug on me. I get very fatigued, dizzy, shakey, and I get chest pain. I also lose all color and it gets noticed quick.My bp has plunged to 60/20 for no reason. It scares the lives out of my friends and doctor because of the lack of warning signs. I'm not even allowed to have coumadin for my clotting problem so I had to have a filter implanted to protect me. And I am completly exhausted for days even feeling the effects after a couple of weeks.

I hope this helps!

Mary S.