Cycling and bicycle discussion forums. 
   Click here to join our community Log in to access your Control Panel  


Go Back   > >

Adaptive Cycling: Handcycles, Amputee Adaptation, Visual Impairment, and Other Needs Have a need for adaptive equipment to ride to compensate for a disability or loss of limb or function? This area is for discussion among those of us in the cycling world that are coming back from traumatic circumstances and tell the world, "No, you are not going to beat me down!"

User Tag List

Reply
 
Thread Tools Search this Thread
Old 05-12-13, 08:49 AM   #1
Darth Lefty 
Disco Infiltrator
Thread Starter
 
Darth Lefty's Avatar
 
Join Date: May 2013
Location: Orangevale CA
Bikes: '76 Paramount, 02 Hardrock, '98 C'Dale XR800, '04 Burley Samba, '15 Priority Classic
Posts: 5,704
Mentioned: 1 Post(s)
Tagged: 0 Thread(s)
Quoted: 108 Post(s)
Hypertrophic cardiomyopathy

Not sure if this is the right forum for this, as it doesn't really require modification of bike, just habits. I have a heart condition - an enlarged heart. It's inherited, no amount of Cheerios is going to fix it. In hindsight there were clues my whole life but I didn't start actually getting chest pain until I was in my early thirties. This is common. It's why teen athletes with the same thing keel over dead one day... they had no idea there was a problem.

I'm on blood pressure medications, which limit heart rate. There have also been some blood sugar side effects which limit my diet, and make me feel like crap after eating any sort of bulk carbs. I sometimes get dizzy standing up. Exercising has therefore been frustrating. I never know setting out if I'm going to feel good enough to keep going, and I never get going too quickly. I have to stop once in a while and no one really wants to go slow enough for me to keep up with him. Getting heart rate up to 90% or burning a lot of calories is out of the question, as is any sort of weightlifting (builds heart muscle in the wrong place).

But I need to keep at it... because it's still exercise and it's still needed. It took me about two years from my diagnosis to really get back to a place where I was happy with my health. I dropped everything at first. But I missed cycling a lot and remembered there were lower gears. I've lost about 25 lb due to diet and lack of weightlifting, that has helped too. So if you are reading this and think that your heart problem means you get to sit on the couch and read the Internet all day - get back out there you big wuss.

Patients with Hypertrophic Cardiomyopathy Place Unnecessary Restrictions on Exercise
Darth Lefty is offline   Reply With Quote
Old 05-23-13, 06:42 PM   #2
digibud
Senior Member
 
digibud's Avatar
 
Join Date: Oct 2009
Location: Further North than U
Bikes: Spec Roubaix, three Fisher Montare, two Pugs
Posts: 1,899
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 6 Post(s)
thanks for the encouragement. there are a lot of us out here with somewhat similar issues. I'm on beta blockers and all sorts of meds that now limit my HR too and it's frustrating but there is nothing that can be done about it in my case either, other than a dramatic change of diet and making my biking adapt to the new reality. I also just broke a collar bone so it's a moot point for the next two months. The only upside is we're still around to complain about the downside . Now when my wife is hoping I'll keep it up, she's thinking of my attitude, not my... bank balance.
digibud is offline   Reply With Quote
Old 05-25-13, 12:15 PM   #3
Darth Lefty 
Disco Infiltrator
Thread Starter
 
Darth Lefty's Avatar
 
Join Date: May 2013
Location: Orangevale CA
Bikes: '76 Paramount, 02 Hardrock, '98 C'Dale XR800, '04 Burley Samba, '15 Priority Classic
Posts: 5,704
Mentioned: 1 Post(s)
Tagged: 0 Thread(s)
Quoted: 108 Post(s)
Thanks, glad I'm not alone.

My pace on my MTB with slicks is about 9 mph. I'm usually at the top of the middle ring. Before the problems on the same bike on the same roads, but with knobbies, I was spinning out the top gear. I do wish I had a top gear over 100 inches in a few places, but not most of the time. A wide gear range helps a lot. I think it's pretty likely any future bike purchases will be certain to have a low gear if not in MTB range then at least better than a road double. I also believe that cyclists place a moral imperative on staying in the saddle, not stopping or getting off to push the bike or rest. I have to give up on this sometimes. You shouldn't stubborn yourself into a heart attack.
Darth Lefty is offline   Reply With Quote
Old 08-19-13, 11:15 PM   #4
Darth Lefty 
Disco Infiltrator
Thread Starter
 
Darth Lefty's Avatar
 
Join Date: May 2013
Location: Orangevale CA
Bikes: '76 Paramount, 02 Hardrock, '98 C'Dale XR800, '04 Burley Samba, '15 Priority Classic
Posts: 5,704
Mentioned: 1 Post(s)
Tagged: 0 Thread(s)
Quoted: 108 Post(s)
A new one for me: riding my bike to a diagnostic and being told that, due to the results, I should not ride home. Thus began a hospital adventure that amounted to nothing... better safe than sorry I guess.
Darth Lefty is offline   Reply With Quote
Old 01-15-14, 04:16 PM   #5
PatrickGSR94
Senior Member
 
PatrickGSR94's Avatar
 
Join Date: Apr 2012
Location: Memphis TN area
Bikes: 2011 Felt Z85 (road/commuter), 2006 Marin Pine Mountain (utility), 1995 KHS Alite 1000 (gravel grinder)
Posts: 6,141
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 47 Post(s)
Hey Darth, I'm gonna get in on this because I may end up that I have HOCM, but may not. We'll see. But my father does have it. He was first diagnosed, I think, in the 60's when he was a teenager, when it was called something else. But he was physically unable to do much of any physical activity for many years, decades in fact. I'm hoping it will not come to that for me. I love cycling too much.

Interesting about being told you couldn't ride home. How did you feel riding to the appointment? I usually feel fine when riding. Hills can be pretty hard for me, and I'll be breathing pretty hard (not sure of heart rate, I don't have a HRM), but I'm not feeling any chest pains or anything.

How old are you, if you don't mind me asking?
PatrickGSR94 is offline   Reply With Quote
Old 01-16-14, 07:38 PM   #6
hamster
Senior Member
 
Join Date: Apr 2006
Location: Escondido, CA
Bikes:
Posts: 2,240
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by PatrickGSR94 View Post
Hey Darth, I'm gonna get in on this because I may end up that I have HOCM, but may not. We'll see. But my father does have it. He was first diagnosed, I think, in the 60's when he was a teenager, when it was called something else. But he was physically unable to do much of any physical activity for many years, decades in fact. I'm hoping it will not come to that for me. I love cycling too much.
Are you sure that it is HOCM you're talking about? Hypertrophic cardiomyopathy is usually almost or completely asymptomatic, that is why it is so insidious (often the first indication that the person has it is sudden death). If your father was physically unable to do any physical activity, that does not sound like HCM, it could be, for example, pulmonary valve stenosis.
hamster is offline   Reply With Quote
Old 01-16-14, 09:54 PM   #7
Darth Lefty 
Disco Infiltrator
Thread Starter
 
Darth Lefty's Avatar
 
Join Date: May 2013
Location: Orangevale CA
Bikes: '76 Paramount, 02 Hardrock, '98 C'Dale XR800, '04 Burley Samba, '15 Priority Classic
Posts: 5,704
Mentioned: 1 Post(s)
Tagged: 0 Thread(s)
Quoted: 108 Post(s)
Quote:
Originally Posted by PatrickGSR94 View Post
Interesting about being told you couldn't ride home. How did you feel riding to the appointment? I usually feel fine when riding. Hills can be pretty hard for me, and I'll be breathing pretty hard (not sure of heart rate, I don't have a HRM), but I'm not feeling any chest pains or anything.

How old are you, if you don't mind me asking?
I'm 36. The way that all went down was as follows...
They read my ICD and some months earlier it had turned up the voltage for one of its pacing modes. So they scheduled me for an echocardiogram. At that, they looked at the end of the ICD lead and decided it looked suspicious. They didn't want me to ride home because they were worried about clots. I wasn't worried - whatever had happened was four months ago! They sent me home to wait for a berth at the hospital for a trans-esophegeal echo, which was unpleasant, ate a day, and revealed nothing. They also sent me back to the doc who installed it for his opinion, and he was unimpressed with the whole thing.

Quote:
Originally Posted by hamster View Post
Are you sure that it is HOCM you're talking about? Hypertrophic cardiomyopathy is usually almost or completely asymptomatic, that is why it is so insidious (often the first indication that the person has it is sudden death). If your father was physically unable to do any physical activity, that does not sound like HCM, it could be, for example, pulmonary valve stenosis.
HCM is not just one thing but a class of hereditary heart conditions. The HCM that runs in my family is sometimes symptomatic and sometimes not. You can read about it here.

Quote:
Adult heterozygotes are also at significant risk for heart disease, including sudden death before the 5th decade as a result of asystole. Males complain of exertional fatigue and may be unable to perform hard labor. They may complain of palpitations and extra-systoles, and sometimes feel faint or may actually collapse temporarily. Females become symptomatic most notably in the later stages of pregnancy during the 4th decade. Diuretics and beta-blockers may relieve these symptoms but many women discontinue them following delivery and often deny significant symptoms thereafter. Echocardiography in symptomatic adults usually reveals hypertrophy of ventricular walls, especially the left, without dilation and outflow obstruction.
...Adult carriers should be monitored by a cardiologist. Many will never develop clinical heart disease, but for those who have heart disease, appropriate medications for heart failure and implants for arrhythmias can be life-saving.
...Heterozygous adults may experience asystole and sudden death, or chronic low-grade heart failure unless appropriately treated. Arrhythmias and repeated syncopal episodes may benefit from pacemaker and defibrillator implantation. Importantly, the majority of adults never have cardiac symptoms and live otherwise healthy lives.

Last edited by Darth Lefty; 01-16-14 at 09:59 PM.
Darth Lefty is offline   Reply With Quote
Old 01-17-14, 12:51 PM   #8
PatrickGSR94
Senior Member
 
PatrickGSR94's Avatar
 
Join Date: Apr 2012
Location: Memphis TN area
Bikes: 2011 Felt Z85 (road/commuter), 2006 Marin Pine Mountain (utility), 1995 KHS Alite 1000 (gravel grinder)
Posts: 6,141
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 47 Post(s)
Quote:
Originally Posted by hamster View Post
Are you sure that it is HOCM you're talking about? Hypertrophic cardiomyopathy is usually almost or completely asymptomatic, that is why it is so insidious (often the first indication that the person has it is sudden death). If your father was physically unable to do any physical activity, that does not sound like HCM, it could be, for example, pulmonary valve stenosis.
HOCM is one version of HCM, the O being for Obstructive. My father was actually diagnosed in 1980 at age 31 (I was wrong earlier), when he couldn't even go halfway up a flight of steps without stopping. But back then it was called IHSS or Idiopathic hypertrophic subaortic stenosis. I believe HOCM is the newer term for the condition.

I looked up IHSS and the first hit on Google is this article, which was published in 1964. http://circ.ahajournals.org/content/...ha;29/5S4/IV-3

Last edited by PatrickGSR94; 01-17-14 at 12:54 PM.
PatrickGSR94 is offline   Reply With Quote
Old 12-05-14, 12:09 AM   #9
Darth Lefty 
Disco Infiltrator
Thread Starter
 
Darth Lefty's Avatar
 
Join Date: May 2013
Location: Orangevale CA
Bikes: '76 Paramount, 02 Hardrock, '98 C'Dale XR800, '04 Burley Samba, '15 Priority Classic
Posts: 5,704
Mentioned: 1 Post(s)
Tagged: 0 Thread(s)
Quoted: 108 Post(s)
Another year on... It's been four years, two cardiologists, one major change in medication and a minor change in dosage, and installation of an ICD since I started on this journey. My situation has been pretty stable for about two years.

I guess I feel like the novelty has worn off. I admit that when I was diagnosed, I was a huge nerd for it. I wanted to try things, learn things. What I've tried and learned is just that it's going to be difficult. Between the condition and the medication, I can't work hard. I'll never again be strong or fast. I can't keep my metabolism up and so I need to watch my diet tightly just to keep from getting more obese. I feel good or bad as blood sugar, hydration, and the medications vary. At my best it doesn't hurt and I'm at maybe 75% capacity. This leaves me able to hike or cycle.

Time to settle in for the long haul of middle age.
__________________
Genesis 49:16-17
Darth Lefty is offline   Reply With Quote
Old 12-05-14, 11:28 AM   #10
PatrickGSR94
Senior Member
 
PatrickGSR94's Avatar
 
Join Date: Apr 2012
Location: Memphis TN area
Bikes: 2011 Felt Z85 (road/commuter), 2006 Marin Pine Mountain (utility), 1995 KHS Alite 1000 (gravel grinder)
Posts: 6,141
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 47 Post(s)
Also a year for me since the signs first showed up, then I was diagnosed officially with HOCM earlier this year. Only thing I do is take 25mg of Metoprolol Tartrate betablocker daily, which is SUPER cheap, and get an annual echo test which is NOT cheap even after insurance.

Other than that it's life as usual with me. Blood pressure stays in the 105-120 over 65-75 range, and resting pulse which was around 60 is now down in the 50's since I started taking the betablocker. I have actually increased my cycling in the past month or so, now making the 31 mile round trip commute as much as 3 times per week. October was the highest cycling mileage month I've ever had at 473 miles.

Last December I only commuted 3 days the entire month, plus one other bike ride. So far this month I've already got 3 commutes under my belt.
PatrickGSR94 is offline   Reply With Quote
Old 03-26-15, 01:25 PM   #11
Darth Lefty 
Disco Infiltrator
Thread Starter
 
Darth Lefty's Avatar
 
Join Date: May 2013
Location: Orangevale CA
Bikes: '76 Paramount, 02 Hardrock, '98 C'Dale XR800, '04 Burley Samba, '15 Priority Classic
Posts: 5,704
Mentioned: 1 Post(s)
Tagged: 0 Thread(s)
Quoted: 108 Post(s)
Doctor changed my two different blood pressure dosages. Doing better. Not sure if it's honeymoon effect.
__________________
Genesis 49:16-17
Darth Lefty is offline   Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off



All times are GMT -6. The time now is 12:35 AM.