Sob

[Bucky]

Hi All

I have read alot about SOB in most threads and I am struggling to get a handle on the range of SOB people deal with. In my case, for instance, I can climb one set of stairs fairly easily, but will have to stop and catch my breath for a minute or two if a second set of stairs is presented right after the first.

I can rake the yard, but if I rake for more than a couple of minutes, I have to stop for a minute and catch my breath. Sometimes I even have to sit down if I've been at it for 5 minutes or so.

Some days I can walk around the block slowly without any SOB, other days, within the first 50 yards I am sucking for air.

Exactly what is the range on this SOB stuff, that is....

Are some folks so bad they can only walk across the room before big time SOB sets in others so good that they can run a race, but just get a little more winded than normal.

Based on my current state it would be very tough for me to return to my industry which would require some semi-phyisical activity. I suppose I could sit behind a desk and do something, but I would first have to get to the desk.

So....let me know what I am looking at here and I am sure it goes from one end of the scale to the other...Oh yes, one final question, does exercise, any exercise, increase your endurance at all. I read that HF patients can actually improve somewhat with exercise (assuming you can exercise). It is the same for us?

Oh, and yes....I know from all my reading to date the disease is variable and very patient specific....so I am not questioning that...just kind of where I am on the SOB scale from one to 10.

Thanks in advance,

Bucky

[Pam Alexson]

Doug you have heard from me a lot but I will weigh in here.

I think as you did state in your post, it varies and thus you have to compare w/ folks who are in a category similar to yours when doing so. It is hard as these parameters are unique. AND they do not show on a message board.

Myself I can relate very well to how you describe your SOB. On your first comparison one flight of stairs in my home, 13 at a steep incline from my cellar to the upstairs is NOT easy. Little dizzy at the top when arriving and stopping and holding on to slow my breathing. Thank goodness for the spindals on the stairs, that they are strong. Walking across the drive to my parents some days OK, getting back ,uphill is a feat.I used to go daily avoid it mostly now. I am thinking a tow rope to real myself across upwards may help LOL.or a vespar scooter would be fun..yeah right!!! My mom is 80 ...she tries to reduce my excursions so that I can conserve energy.
A lot is about picking and choosing ones activities. I do not dress out of PJ's unless I must leave the house for a much needed appointment and any errands need to be done early, occasionally.. and NOT daily, so I can rest in early afternoon. I cancel appointments if I am not up to the challenge , and if there are more urgent ones...also always use my handicap placard these days IT is a combination of SOB and exhaustion. Any excess fluid in lower extremities makes it very hard and that is a daily diuretic dosing phenomenon. You wrote that one leg/ foot is more swollen then other for you... same here my right less then left. They feel like they are heavy and do not look like mine and that starts early soon after i get out of bed. IF I can get them down I have a chance to do something extra in the afternoon after a nap / rest....sometimes..rarely. All activities are planned and counted and I space everything even conversations . People I know say I am quieter, more reclusive. It is all planned out of necessity. Long, laugh filled conversations make me sound scruffy( my term) I love to laugh and to talk I get very animated and involved and it wears me out.

With the obstruction removed I recover sooner w/ extreme SOB not as painful ..if that makes sense. I used to get extremely dizzy and my head, face , lips would get all prickly and I would nearly pass out and the full pressure in my chest would actually hurt. I still do get ( but less) pressure in my left neck which I used to have when I was really full of excess fluid( it went away for a few years). My jaw and chin will add to the chest pain I get in my left arm. When I have more fluid on it seems worse everything seems worse.When I am not rested and have done TOO many activities all the problems are worse... SOB and weakness / exhaustion are the worse.

Getting to sleep at night brings on some SOB issues until I adjust my height in bed and breathing to my machine. Resolve a little faster if not too much fluid on..much faster then pre-myectomy days.

I sat behind my desk in my cubie, 7 1/2 years ago and began to throw stuff out as I could not keep up. I had difficulty conversing and staying "present " in the moment. It was actually a relief( double sided sword) when the diagnosis came w/ a NO WORK order by my doctors that were very in tuned to what was wrong. Yeah I agree getting to the desk then and even now would only be a smidgeon of what would be expected of someone w/ severe HCM symptoms.

You probably need to have a very serious conversation w/ your HCM doc.It is not easy and even when you are told you should not work it becomes a battle... a multi faceted battle w/ many diverse realizations and ramifications and struggles.

I hope others will take the time to share their struggles . It is not easy for most of us to write them, face them and then read them. You know we want to show the hope and we all live that way as it is so important to dealing w/ this disease.. BUT, I also realize that honest candor is very important to each person who comes here and may be dealing w/ their most extreme and challenging symptoms of HCM.

Pam

[BlueDevil]

I guess my story is a good illustration of how things can differ from person to person when it comes to SOB and HCM in general. To give a bit of background: I have no obstruction and never have. I had a biventricular pacemaker/ICD implanted in 2005.

Three days a week I attend group water fitness at the local Y. We are in motion for pretty much the entire 45-minute length of the class. I have no idea how fast I get my heart going, but my partner and I can tell you: I put a lot of effort into the exercise. I get to where I breathe hard -- like anyone doing rigorous physical activity -- but I'm not out of breath and don't feel like I have to stop.

On some of the other days of the week, I've put in 30+ minutes (2-3 miles) on a recumbent exercise bike and then walked a mile on the track. No breathlessness there, either. (I should be doing this two days a week but haven't motivated myself to do it. Going to the gym more than I currently do takes some discipline I haven't yet mastered.)

Our townhouse is tall and narrow with five sets of stairs of seven stairs each, with the master bedroom on the top floor. I'm up and down the stairs all the time, and I don't always walk up them; often I bound up one or two sets, depending on where I'm going and where I'm at. When I get to the top, I'm not out of breath. Sure I feel like I've done some physical exertion, but I wouldn't say I have to stop and catch my breath. The most discomfort I feel is in my legs, but it goes away quickly.

Also, I'm on the heart transplant waiting list but on inactive status at this time. My V02max during an early cardiac stress test was in the single digits. My last test, performed not quite a year ago, showed enough improvement to be considered borderline. The doctor's words to me were: "Even if you came here today and said you wanted a transplant right now, I'd have to say no." Often I wonder why I'm on the waiting list when I feel as well as I do.

This isn't to say that I don't get short of breath at times, but I can say that I had more of a problem before receiving the pacemaker. I believe it is making all the difference in the world for me, and I hope it continues to do so for the rest of my natural life. I emphatically DO NOT want this transplant if I can avoid it.

[Bucky]

Thanks Blue Devil.

This SOB stuff is very frustration. You would think somebody on the transplant list would be huffing an puffing and puffing and huffing. Go Figure. It look like the biventricular pacing is working.

I wrote my original post because I was very curious about where I stand in the SOB line. When I read SOB, I never know whether the person is crawling on his hands and knees to get to the kitchen or doing water aerobics and feeling fine (you dirty dog you).

Again, thanks I am just trying to get a handle on where I am. The real tendency is to say, OK my symptoms are such and such therefore my HCM is (worse or better) than the others. It appears that there is no worse or better and no way to relate you ability to exercise other than to see what it is and what it is is what it is........does that make sense??


Thanks again.


bucky

[Pam Alexson]

Tim..It is great to hear how well you are doing and it is very inspiring to all those, any of us who may have different challenges w/ our HCM.

I am excited to hear your progress w/ Bi- V pacing. I will have to read a little more on it and ask some questions @ my next visit in a few weeks w/ the EP. Last time I saw her she gave me a brochure on CRT( cardiac resynchronization therapy). She told me when my time comes she will try that on me. I looked @ her w/ a sort of shock, she shot a look back @ me and she said " if your time comes."

She told me that when individuals ventricles are very asynchronic as mine are getting to be (w/ wider and wider QRS complex) that CRT works wonderfully and they feel better and live much more normal lives. I did read that different things that they can do w/ different devise intervention can take a person right off the transplant list if they get in that position.

Your post is very great to read and to hear how you are doing. Thanks...

Transplants are a great gift and we are blessed to have special people w/ us who have had them but it is no walk in the park for any of them.
I agree something not to have to have unless absolutely a must . Here 's to keeping these tickers going as long as they will will take us.

Pam

[gfox42]

Bucky,
You've kind of hit on an important point. We can't measure severity of symptoms (or disease) on a single scale -- we can't say that yours is a 7 and mine is a 4, so yours is worse than mine.

Like a lot of things in life, if we were going to try to put a number (or a rank) on your disease and mine, we'd have to do it on multiple scales: your SOB limits your exercise more than mine, but my (something else) is worse than yours . . . and it wouldn't be two scales, either!

Let me suggest a way of (very roughly) reducing any measurement to about two scales, though. One scale measures the degree of danger your disease poses -- for example, if you're at risk for SCD. The other measures the extent to which you feel your disease limits your life.

The reason I emphasize "you feel" is that there is no objective way to measure this sort of thing. It's a bit like pain -- there's a reason why the doctors ask you to score your pain on a scale of 1-10: it's that there is no objective measurement possible.

It sounds as though you feel that your disease limits you a lot. Isn't that a sufficient thing to say? I'm not sure it would be useful to know that you feel that way more/less than someone else does.

Gordon

[Bucky]

Great responses. Your absolutely right. The info that I have on the SCD side is that I am not at high risk. The info on the "How do I feel" side is very self absorbed. To the extent most of us are quite agitated to have to deal with this....no, I don't feel good, but on the other hand can I get around and kind of live a normal life, yes. Well yes, kind of, its just allot different than pre HCM life, but it's OK. so from that standpoint I feel OK.

Great distinction and a great way to look at it. Thanks for the input.

It's all relative isn't it. When I read about the youngsters and young families who are working through this or who have lost loved ones it always grounds me. Yes, life isn't exactly what it was, but its still OK and might get better. For those who have lost loved one or who have youngsters who are fighting this, life is much more challenging.

Again, thanks. This kind of forum is great for tossing out these issues and getting some advice, perspective and even a kick in the b_____ when self absorption takes over.

Bucky

[Pam Alexson]

Say Whatttt???

I do not think anyone, and I know Gordon was not saying that or referring to it ...SELF absorbed ...NO WAY!!

I think it would be worse to say it is not a problem or less of a problem for ANYONE of any age.

Look I am and I know most of us are very sympathetic to young people w/ diseases and in particular children w/ HCM and the families.

A lot of our kids mine included, have had a reverse experience. In the years that it really made a difference to them( when they are in their teens they are somewhat self absorbed which is natural) they very much missed,and needed a strong healthy parent. They did not have that in me. They compared my life style; their lifestyle and their loss w/ friends who had a healthy parent. Most of what they dealt w/ was done silently and privately. Now years later I think, I wish, I had been able to focus on their losses and sorrows. Now some of us have very great spouses .. I have an ex .. and even though he is great and loves the kids and is available, I am and always will be the one that he and the kids defer to for EVERYTHING. I hate this king of the pack role that I created but it is impossible for me to change it now. Maybe some day they will fire me! Sooooo... I still deal A LOT w/ the ramifications of what this disease stole from them, because I was forced to be a little bit self absorbed as I struggled.

Don't for a minute think any of us or anyone would even if it is children who have this disease, slam you or kick you in the butt for sharing the difficulties and paying attention to you. At the end of the day, we all give back in different ways and that is important to the needed support here.

Young or old alike, the mind and spirit is always youthful OR should be. This HCM stuff stinks big time to all of us and we all hate it on a different level on any given day!

Ok said my piece... just don't feel like older is less important in the struggles of HCM.

Pam

[jorgusen]

I myself feel better excercising than not,,
When I went to a specialist,,stanford,,did the vo2,,he said I had a better vo2 than 80% of people my age, 56.
My local cardiolgist insists that I keep excercising at the level I have always done.
jog 6 miles a day and lift weights,,,played college football and canadian for 8 years and just kept working hard all those years,,
my specialist would like me to keep my heartrate below 130s,,but definitly keep working . My spetum has been measured anywhere from 12 to 19,,
But I do have my days when a single flight of stairs will cause some sob and the next day jog 8 miles and never feel a thing!
crazy huh?

[Bucky]

Jorguson:

I wanna be like you. Go for the gold. I ran a few 10K's in my time but me thinks running may be a stretch right now. We'll see.


bucky

[gfox42]

Bucky, everyone who has symptoms certainly thinks about HCM a fair amount!

What I was trying to say was this: if you feel you have a problem with SOB, you do -- it's not particularly useful to say that your problem is worse or better than mine.

That's a different issue than the question what can be done about it. I'm not an MD, so I have no advice on that score. Have you seen an HCM specialist? What did they have to say?

Gordon

[Pam Alexson]

http://circres.ahajournals.org/cgi/content/full/98/4/540

Study done on mice.. note that the mice did not do well w/ the swimming ...thank god we are not mice ! Maybe they were afraid of the water!

[BlueDevil]

I don't mean to derail this thread, but I wanted to give some additional reference to what I previously posted.

Don't hold me 100% on this, but I was looking at my notes last night about my V02max results, and this is how they looked:

Pre-pacemaker in 2005 my V02max was between 8 and 9.
In May last year, it was measured at 14.1.

I am truly hoping that it will be a bit more improved over that on the next test, but I'm trying not to think too much about it. I go for my quarterly follow-up later this month, but I won't be doing another V02max at that time. That might be in June.

The only negative I can say right now is I've had two episodes of AF over a 6-month period, the most recent of which was 2 weeks ago. Every time this happens, it wrecks my confidence.

[Bucky]

Gordon:


Thanks for your thoughts. I wasn't really trying to compare my SOB to anyone else's so much as I was curious as to how I was doing. As I said earlier, I don't know when somebody says they are SOB if they are crawling, walking or running and it looks like it runs the gamut, so it look like I'll just have to be an old SOB in my own right.

Yes, I've seen an HCM specialist and we are working on it, but as with most of us I want it fixed NOW, not one year from now.

Pam.....sorry about the mice. Have they tried horses.

Take care all. I love these forums.

bucky