Fifty Plus (50+) - CHF and Cycling
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05-05-11, 07:58 AM
Has anyone diagnosed with congestive heart failure been able to return to cycling, and how did you manage it?
Apparently after a bout of pneumonia about 5 years ago, and as a result of prolonged anemia due to untreated uterine fibroids, I have developed CHF. After the pneumonia I was diagnosed with exercise induced asthma. This diagnosis never really satisfied me but being a student without money or insurance I didn't have the option of getting any actual medical help. Inhalers they gave me just made me dizzy and sick. I had a very nearly constant dry, hacking cough which no one seemed able to explain. I felt weak, extremely fatigued, and had periods of sudden unexplained dizzyiness. I put much of this down to the anemia. Doctors told me being anemic wasn't important. Apparently that was wrong since it seems to have contributed to the development of this heart failure.
I was caring for my elderly father and couldn't really pursue my own health issues. Then I couldn't get the necessary surgery done because - well, student - no money - no insurance. At this point (after a full year of trying) I've had the surgery, but now I the hospital is forcing the sale of my home (which I built myself, so that should be some indication of how little it's worth) to pay medical bills as apparently someone with no income is not eligible for charity care if they have ANYTHING AT ALL the hospital can take and sell. Apparently one's home is considered a "liquid asset".
On top of this, the surgery didn't even solve the problem. Just walking around the corner to the bus stop has me gasping for breath so hard people are terrified I'm having a heart attack (that is less than 0.4 miles). Riding the bike the same distance (previously I rode 30 to 50 miles per day 3 to 5 days per week) and I can barely walk (almost fell down when I got off the bike). I do not recover. It takes several hours for me to catch my breath and I'm dizzy, faintly nauseous, and weak. I have pitting edema, extreme fatigue, shortness of breath, and it's harder to breathe lying flat so I don't (3 pillows on my bed, I used to use none).
To top it all off, I cannot afford the tests to see how bad the CHF is because I already have tens of thousands of dollars of unpaid medical bills, not to mention the 80k in student loan debt for a PhD program I am now no longer healthy enough to complete. The doctor at the (not free but at least cheapish) clinic for poor people doesn't feel comfortable treating me with anything more than just the hydrochlorthiazide for BP (I lost 25 lbs the first 2 days on that) without having further test results.
There are no cholesterol issues. To my knowledge my last EKG was at least normal-ish - but CHF doesn't show up very well if at all on an EKG hence the doctor's desire for me to get the echocardiogram that I can't pay for. BP was 148 over I forget which may not sound all that high til you realize that my normal BP is usually about 100/75. Since the surgery, my heart rate is down from between 100 and 120 (at rest, due to the anemia) to around 80-something, which I guess is good - but too little too late, apparently.
I'm pretty depressed about all this. I don't know how treatable the condition is (if at all) without further testing which I am not going to get, at least not until sometime next year IF the Obama health care bill actually goes into effect. I'm sure there's some way that'll be "fixed" so it screws over people like me just the same (did I mention I'm not terribly hopeful right now?)
Has anybody managed to overcome this? Is there any hope for me at all to ever get back on my bike?
05-05-11, 02:56 PM
So many aspects of this post just do not square with what I understand the rules to be that I'm left with wonderment. Either this is a cry for help by someone lost in the system, or it is a troll. If this is sincere the course of action is to seek help from any of the many non-profit and government agencies that are there to guide people through difficult times. There are both in-hospital and community resources that can help the poster understand the medical situation. Taken at face value getting back on the bike is the least of the poster's issues. Plus, unless the personal provider has prohibited it a person with congestive heart failure is, to my understanding, not prohibited from any exercise the patient feels like undertaking.
05-05-11, 03:05 PM
You are a prime candidate for bankruptcy, which is made for folks in your situation.
As regards the previous post about all those agencies out there wanting to help - don't count on it. Please identify some that actually are available and that work.
And, yes, it seems the poster's bicycling problems are very secondary to other problems.
05-05-11, 03:14 PM
Geez, do I have to be subjected to accusations that I'm a liar or a troll now too, as if my situation isn't stressful enough?
Check my profile. I've been a member for some time. I've posted before.
THERE ARE NO PROGRAMS TO HELP ME. None. I've even called various governmental headquarters in Washington. I am a well-educated formerly upper-middle class member of society, I worked as a government contractor for 15 years, I've also worked in the mental health field for many years, so I know my way around the system. The point is there IS no system. I am not technically considered indigent because I own my own home, something I worked very hard to do. Perhaps there are some states that are more lenient about that than others, but this one isn't. My home, it was made VERY clear to me, is considered a "liquid asset" and a forced sale WILL take place to cover my medical bills. That means it will be sold at sheriff's auction just as soon as they can wade through the legalese. Which will probably be very very soon - they sent one bill to the collection agency even before I got a copy of it, less than 3 weeks after the procedure took place. If there were a mortgage on it, they probably wouldn't bother, but I paid cash for the land and built the house myself. It was my retirement plan.
BTW Bankruptcy is not an option, since it costs several thousand dollars up front to a lawyer to file and I have NO cash left at this point. Since there is nothing I can do about my medical care situation, I'd at least like to know whether or not I'm ever going to be able to get on a bike and ride or walk around the corner or even, if you can imagine it, ever get a job again, since currently I'm in no shape to try to hold one down. "disability" takes years and a lawyer to get, in the meantime I'm about to be rendered homeless. Plus it would only pay me around $1,000 per month - basically not enough to actually live on. That would have been fine when I still owned my home free and clear, but when you don't, and minimum rent where I live is $600/month (and that place has roaches constantly), I doubt I'll ever be able to live independently again.
It may seem to you that whether or not I can ever ride my bike again is "the least of my worries", but my future prognosis is about the only thing I have left to hope for.
At this point I CANNOT get back on the bike because the least amount of exercise means I cannot breathe. I provided as much information as I did so someone in a similar situation would have the best idea I could give them as to my current condition. Also to preclude someone telling me to seek medical advice since I can't get any. Perhaps after my home is seized and sold I will then be considered eligible for indigent care, unfortunately I'll also be homeless.
Hopefully that's been addressed adequately. Please, if anyone has been in a similar situation with CHF - extreme exercise intolerance - please relate your experience with possible recovery, and how you did it. I could use a little hope here.
05-05-11, 03:53 PM
I freely admit getting help in the current social service maze is a challenge. Recently I was told by a person very actively engaged in social service work their biggest problem is that there are so many different agencies chasing the same dollars to help any specified clientele that all their time and money is taken up protecting their turf. A sad state of affairs indeed.
But, in just about every community there is some agency like Salvation Army, Crisis Line, Love INC, Hospital Patient Advocate, Legal Services, etc whose job it is to assist people like you. There is at least one agency in most communities that has a catalog of all the others that render aid. Still assuming this is real, it seems to me job one is to get some help on perspective. This presents as being very overwelmed and helpless, almost like "I give up". There are remedies and help for everything you mention. By the way, as I understand the rules your home is not a liquid asset and as such you cannot be forced to sell it to pay a debt unless it is a pretty substantial mansion, and even then you may not be required to.
05-05-11, 04:44 PM
Have you talked with a bankruptcy attorney? I know some who actually take items in swap, etc., for their services. Also, there can be provisions for the payment to the attorney's fees to come out of the bankruptcy settlement. If you have talked to several, then disregard this thought.
I know what you mean about agencies. I work with literally thousands of adult individuals and their families all across the country with developmental disabilities. Everyone thinks there are services for them - but - in reality, there are waiting lists of several hundreds of thousands and parents and families are falling off the edge everyday.
Here is one national survey I just completed regarding the supposed use and availability of "natural supports." (http://ourwebs.info/naturalsupportmain.htm) Read the 304 comments (http://ourwebs.info/ResponsesQuestion8only.doc) by parents, families, caregivers and individuals all across the country as regard "help." Some are lucky enough to get it - mostly those in better-equipped states or who got services a few years back when the waiting lists were only 10 years or so (that means me for my son!)
Please talk with more attorneys. They generally don't charge for their initial interview. Also, have you tried legal services?
Here is more information about those waitlists (http://www.noewait.net), if someone does not believe me.
And things are rapidly going DOWNHILL.
05-05-11, 06:42 PM
HawkOwl, which part of "there is no assistance for me" is it that you are having trouble with? I can tell you that I've been turned down for assistance on the basis that I am not a Christian from several local Christian organizations. Waiting lists and "eligibility" requirements that are little short of ludicrous have made me ineligible for many others (one program counted my STUDENT LOANS as INCOME, thereby making me ineligible for assistance from them).
I can tell you from FIRST HAND KNOWLEDGE that my home IS being considered a "liquid asset" and WILL be disposed of at auction, will I, nill I, so your "understanding" clearly falls short of reality. Please do not post to this thread again unless you have something meaningful to say about recovery (or lack thereof) from CHF. My gosh!
As for bankruptcy settlement, there can be no settlement as I have no income, have not had any significant income for years, and am unlikely to have any income in the foreseeable future. Legal services doesn't handle bankruptcies, at least not where I'm at (there are too many of them), and there's a huge waiting list besides. My property, being extremely rural, will not bring that much at auction. It won't cover my medical bills accrued thus far, let alone the 80k in student loan debt that cannot be discharged under any circumstances other than actual payment. No lawyer would touch this with a ten foot pole - there is no money to pay him and there isn't going to BE any money to pay him. I TRIED to get a job and at least pay SOMETHING on these bills to stop my home being seized, but due to the CHF I am unable to work. I had to quit. I couldn't even manage to get back and forth to the bus, let alone ride my bike in on days/at times when the bus isn't running.
Also bankruptcy proceedings have gotten terrifically difficult (and hence more expensive) since the Bush "reforms" in this area. Things are bad all the way around, many families are ending up homeless due to medical bills and virtual, if not actually legally filed, bankruptcy. Lots of people are even worse off than I am. People are dying because they can't get adequate medical care and in point of fact my condition would undoubtedly NOT have deteriorated this far had I been able to get timely preventative care, or been able to have the fibroids treated BEFORE I became so anemic and fatigued it damaged my heart.
But that's all water under the bridge, and not the conversation I intended to start.
I know at least one of you means well, but could we please focus on the issue of potential recovery? I'm sorry, I really am, but I've already been put through the mill by people who just refuse to believe that medical assistance is not available to people like me, people who are bound and determined to believe that sick people are lazy grifters sucking them dry for no good reason. I even had a fellow student look me in the eye shortly before I had to drop out of my doctoral program and tell me, "I don't care WHAT you say, if someone really needs medical care all they have to do is go to the Emergency Room and they HAVE to treat you, IF there's something REALLY wrong with you". Implying, therefore, that there's really nothing wrong with me. All a hospital HAS to do is patch you up enough so you don't bleed to death and set any obviously broken bones. They don't HAVE to do anything else, and most of them don't. If you go in and tell them you have cancer, they are not required to provide anything other than palliative care - eg if you're on your last legs and about to die they'll slap you in a hospital bed and dose you with morphine til you stop breathing, but even if it's still treatable they are NOT required to treat it as it's not an IMMEDIATE threat to your life. Then they will harass your surviving relatives with threatening phone calls to try to get them to pay outstanding medical bills, even though there's no legal standing for trying to collect from other people. I know THIS to be true as well because after 2 years I'm STILL getting collection calls from the hospital after my dad died - and he had insurance that paid 80% of his hospital bills!
But again, there I'm off topic myself. There's no help for any of that and having to drag it all back out and explain it again just upsets me even more. So please please please please PLEASE, could we drop this line of discussion and just talk about CHF and its effect on your life, your cycling, and how much (if any) recovery some of you with the condition have had.
05-05-11, 07:29 PM
I was not trifling with you. It is just that I personally have assisted several people with similar circumstances to yours through the morass of agencies that are supposed to help. Denver has from his perspective also as an experienced person has tried to steer you toward help. But, you cling to the perspective that there is no help for you. Perhaps you are correct. But, it reads more like a person who mentally overcome.
Getting back to cycling: Reading your posts I'm confused about just how much exercise your body will tolerate. I assume you have been officially diagnosed by competent medical authority as having CHF. If so you know CHF is a progressive condition that allows you to do whatever your body will permit. Exercise, unless competent medical authority has said differently in your case, will not hasten the failure. People can lead essentially normal lives and do whatever they please for many years after diagnosis.
05-05-11, 07:46 PM
There is a recent thread in the 50+ forum on bicycling with heart disease. Perhaps that could be of some help??
05-05-11, 07:50 PM
Speaking as a person who has helped others through the services morass I've tried to steer you to possible places for help. Denver, from his perspective as a person very experienced with dealing with the agencies has also tried to help. Since you laid out a lengthy description of your ills and difficulties you can hardly complain when we try to give what help we can via this long distance medium. I would add the suggestion that you contact heart related support groups in your area. Often those are better able to provide meaningful help than anyone else.
If you say "there is no help for me" then there is no help. There is nothing neither I nor Denver nor anyone else can do for you. Especially when we are communicating via the internet and don't know all the details.
Have you been officially diagnosed by competent medical professionals with CHF? If so did the medical provider recommend any activity restrictions? Most people I know who have official diagnosis of CHF can do whatever they wish as long as they wish. In fact, they are encouraged to go as much as their body will allow. With that in mind the direct answer to your lead in questiion is: Get on the bike and ride.
05-05-11, 08:09 PM
I give up. If there's a moderator with the power to do so, just delete this entire thread - it's beyond useless. Some people just have to have their say regardless of how off topic or ignorant they are on the actual subject.
I'm sorry, DnvrFox, I did try to PM you separately but I'm not allowed to PM apparently til I've posted 50 comments and I'm unwilling to continue to participate in this thread to that point. I know you're being sympathetic.
HawkOwl, I don't know why you feel necessary to intrude into this situation and to be so judgmental. I was looking for information from people who actually HAVE CHF and have gone through a recovery process, not your unfounded suppositions. The point is you are not being helpful. Twice I've SPECIFICALLY requested that people stick to what I asked for help with - the process of coming to grips with your CHF and the impact it has had on your activity levels. You consistently disregard that request and continue to post blameful doubting commentary.
I'm sorry to have troubled the forum. Again, if there's a moderator with the power to do so, please delete this thread or at least lock it. I'll not bother the community again.
05-06-11, 02:13 AM
I give up. If there's a moderator with the power to do so, just delete this entire thread - it's beyond useless..
What's this got to do with cycling? I'm bored.
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