It's not the will but the ability
March 15, 2010 12:30 PM   Subscribe

How do I go from 65 miles an hour to 10? Until I was recently hospitalized with multiple pulmonary embolisms I was a very active person at 46: ran and cycled a lot, raising two very young kids, cooking, gardening, splitting wood, I love domesticity and productivity. But the clots have left me a shell of what I was. How do I do less? It’s making me crazy and more than a little depressed.

They don’t know what caused the clots but I’m told it’s left my lungs a bit scarred and I shouldn’t expect to regain my stamina for at least three to six months. After over a month of frightening illness and a week in the hospital I’m finally home and breathing much easier. But the blood thinners are causing a lot of pain and swelling in my legs and even walking can sometimes be a challenge. I’ve been told repeatedly to take it easy and to do a small fraction of what I did—to exercise, but much less strenuously, and with great caution, and to do it less frequently. No more running or cycling, maybe some zesty chair exercises. I’ve also been told that this is all very serious and to be alert for more potential problems including chest pains and more shortness of breath, both of which could be brought on by overdoing it. These symptoms, should they occur, will require an immediate trip back to the ER. How do I do this? How do I do less? What might I do instead? Anyone else with experience with embolisms? Yes, I'm addressing the depression issue with my doctor, but how do I deal with the inactivity? What should I realistically expect for the next six months? if you'd like to offer advice privately.
posted by anonymous to Health & Fitness (12 answers total) 4 users marked this as a favorite
What might I do instead?

Cultivate more leisurely hobbies. Learn to cook. Read all those books you've always wanted to, or if you're not sure what you want take a gander at the AskMe Wiki's list of book recommendation threads. Start writing every day--journaling, your autobiography, fiction, whatever.
posted by sallybrown at 12:45 PM on March 15, 2010

I'm a little unclear, will you be back to "normal" (I know, I know you can't expect to be back to fully normal) after 3 to 6 months? If so, enjoy the time off. I know it's tough, but with everything that you said you were doing comes alot of stress.

I'd also suggest cooking/reading.

Any interest in taking online courses?

What about some VERY light swimming?
posted by TheBones at 1:00 PM on March 15, 2010

Agreeing totally with sallybrown - from what you say about your personality you need to be active, but can't be physically active right now. So look for things that are mentally active instead; anything from computer games to learning a language.

Secondly, are you able to see a physiotherapist (I think they're physical therapists in the USA)? They might be able to give you some more interesting things to do than just 'zesty chair exercises', and help you with the transition (all the physios I've ever met have been the sporty active type, so they should understand what a blow this is to you).
posted by Coobeastie at 1:01 PM on March 15, 2010

Learn how to play a musical instrument. Take up painting, sewing, knitting. Find some form of meditation that appeals to you, it should help with the stress and depression. I hope you feel better soon.
posted by mareli at 1:16 PM on March 15, 2010

I suffered from a severe DVT and PE back in 2007.

The good news I can offer you is that, in my experience, it's possible to get things mostly back to normal.

The bad news is that it'll take time and effort.

After my PE, I went through a period of fatigue, inactivity and depression at first, too. It's like you're a shadow of what you were before. I not only had trouble walking (mostly due to swelling from the DVT), but I got a certain kind of fatigue that was a combination of exhaustion and a grinding headache that I dubbed "The Awfulness." Through the end of 2008, I'd come home from work feeling completely ground down and often go to bed at 5:30pm. Not good.

That's not how it is now. I feel like I'm back to maybe 90% of where I was before the PE and DVT. The PE was a defining facet of my life in the year after it happened, but now, it's faded into the background, and I have little problem getting through the day.

A couple of things that will help:

Unless your doctor has precluded it, walk. Slowly at first, then more quickly as you feel like you're not nearing the edge of fatigue. It won't be running or cycling, but it'll help you stay active and build back to normal.

They probably have you on Coumadin (warfarin) if you're no longer on heparin. While doctors will say that there are no side effects to Coumadin, based on my experience, the feedback of everyone I've spoken with who has been on it, and hundreds of messages on various forums, Coumadin does cause some degree of fatigue. In addition, Coumadin dosage is a tremendous pain to manage, with frequent blood tests and adjustments. When the hematologists found the syndrome that caused the PE and told me that I'd have to take the stuff for the rest of my life, it was like being sentenced. Thankfully, it's possible to get it under control.

I had trouble working with my existing doctor on the Coumadin maintenance. Going to a lab for tests continually was a hassle and he was never able to get the dosage right. I grew frustrated, and looked for other solutions. After doing the following two things, the hassle and fatigue associated with the medication died down substantially.

* I switched to a doctor who worked with me to get a home INR monitor. If you don't have to be on blood thinners for the rest of your life, you can rent these. If you do, they're worth the money even if insurance doesn't cover it.

* My doctor also allows me to report via e-mail on INR levels and dosage adjustments. My former doctor and I had been continually playing phone tag to adjust dosages, and it was a pain for both of us.

A couple of months after switching docs, getting the home monitor and going back and forth in e-mail about INR levels, my new doc found the right dosage, I felt far less fatigued, and maintenance was much less of a hassle.

I also found, because I had so little energy and so much stress, I found myself overeating to try and get my energy back. This was a vicious cycle -- the more I ate, the worse I felt, the less energy I had, and the worse the swelling and pain in my leg would be! Not to mention, I gained weight. I found that when I cut back, especially on carbohydrates, my overall energy level was much higher.

Finally, be sure to listen to your doctor about what to do and what not to do. If you don't feel your doctor is being responsive or is good at managing this type of thing, shop for a new doctor who is either well-versed in managing this type of thing, or who is willing to work with you on how to get you back to your lifestyle. Be sure to be in touch with the hematologist (or *a* hematologist, if you haven't seen one yet) to try and determine the cause of the PE. It can feel like a full time job managing the health care providers, but once you find the right doc, it gets a lot easier.

But ultimately, you'll just need to slowly ramp it up. As to what to do? In a couple of months, I'd imagine cooking, gardening, and basic domestic things won't be that much of a problem. As above, walk instead of run, and ramp it up. Movies, books, newspapers, or desk-related work or hobbies can fill the rest of the time. Hopefully, you'll feel better in a year or two, too.
posted by eschatfische at 1:18 PM on March 15, 2010 [2 favorites]

Have you been taking any hormonal birth control? Have you been using any estrogen replacement supplements? That may be the cause.

After I stopped running after high school, I became really unhappy for a while. It takes a while to get used to being more sedentary and to find things you enjoy doing.
posted by candasartan at 1:21 PM on March 15, 2010

I believe that you will do fine.

Although, I'm not quite in the same boat as you, I got a deep vein thrombosis from an unknown cause when I was 27 that wreaked all kinds of havoc with my circulation. The short of it was that I spent three weeks in the hospital, 1/3 of that in the ICU, and an additional month at home where I could barely get around with a walker.

I've been on anticoagulants on and off and now permanently on for the the past 12 years. I'll give you the short list of advice from my experience. I am not a doctor and more importantly, I know nothing about your case than what you've said.
  1. Take the anticoagulants religiously. Get your INR (Internation Normalized Ratio) checked routinely.
  2. If you have pitting edema and your doctor thinks it's a good idea, wear the compression stockings. I wear half stockings on my lower legs. Yeah, they're soo damn sexy, but one thing that happened to me for not wearing them was that the daily swelling and relaxing caused microtears in my skin, which landed me with a MRSE infection, which was a total of 5 days in the hospital and several more at home with an IV of vancomycin. This was so easy to avoid, but I didn't know it.
  3. Read up on the things that interact with your anticoagulants. If you're on coumadin/warfarin sodium, you will discover that this is a very long list. It will become your responsibility to pay attention to it and whenever you get a prescription to remind the MD and to double check.
  4. Get a Medicalert bracelet to speak when you can't.
  5. Take the time to heal and you will heal sooner. I'm total type A, but this was humbling. I took the time to walk with a cane, take time to have my legs elevated, etc.
  6. Get used to disappointment in diagnostics. I keep my eyes open for new tests, but I've flunked every one so far. I've tried offering pints of my blood to hemotologists, figuring my case would be a wet dream for a researcher (no luck there). There are things that we will never know and in that camp there are some things that we can't know.
  7. I've been told to not eat leafy greens (or other foods high in vitamin K). For me, the truth of the matter is that I only need to be consistent in my diet (cross reference #1).
  8. I have eliminated activities that would result in blunt trauma, but still try to be active. I do not ski, snowboard, etc. I do walk frequently, am doing the 100 pushups program, and will be start couch to 5K soonish. No problems, other than running makes my legs swell and that can sting - but reasonable activity is better than none. I did not have an embolism, so I'm in a different camp than you in that regard, so pay attention to your body.

posted by plinth at 1:24 PM on March 15, 2010

You could be describing my own health situation 20 years ago. I was very physically active: competitive dancing, long-range hiking, running and judo. Then I had a bad, bad case of bronchitis that put me in the hospital for weeks and left my lungs scarred. I've never fully regained the aerobic stamina I used to have. But I have managed to carve out a niche of activities I can do that are fun.

The first thing I'll say is that you will get through this. The first couple years after my illness, I was in bad shape; first bedridden, then in a wheelchair with oxygen, then walking with a walker and oxygen, then with a cane (so I could stop and lean on it to catch my breath). But slowly, steadily some of my functionality came back.

Even if you never regain the stamina of your youth, you'll find new ways to cope. In fact, it's taught me a lot about how to appreciate what time I do have and what health I have remaining. Everyone that has the blessing of growing old has to learn to let go of their youthful stamina. For you and me, perhaps, we had to learn to do it much more abruptly. But there are compensations.

Nowadays, I can't do hiking the way I once did it. I can't trudge swiftly over a mountain range, legs pumping and sweat pouring down my face, stopping only infrequently for a rest and water. But I've learned to hike in a way that has become much more enjoyable. I go on mild, easy hikes and instead of focusing on the destination, I go slowly and spend a lot more time enjoying the journey. I stop more frequently to catch my breath, sit and look at the countryside, examine the flora. I stop and smell the roses now because I literally have to do so. And I swear, I lok back on my youthful hikes and realize that, while they were fun, I was missing out on the best part of what hiking is all about.

My activities have taken on much more of that flavor, now, too. Less about quantity and more about quality. I can't get drunk like aI did when I was a younger man. It would wreak havoc on my immune system, depress my breathing, etc. and I'd probably end up with a bad cold, whcih is bad news. So nowadays I focus on drinks which are quality rather than quantity. I'll tell you, I'd rather have one excellent ale than a six pack of Coors any day. It's what I should have been doing 25 years ago. But as they say, youth is sometimes wasted on the young.

I can't dance competitively or run, anymore. But I have found that I'm okay on a bike as long as I don't try to get all Lance Armstrong-y and the terrain isn't very up-and-down. A stationary bike is excellent, because my lungs don't always have good days and on a stationary bike, I can go as slow as I want, with as much resistance as I want, and stop any time if I get too winded.

I can now hike a bit over moderate terrain, but I go slow and plan to really enjoy the time, take photos, write in a journal on the way, read a bit during rests, etc. I can hike higher peaks, now, but it takes me forever to do it. I climbed Mt. Sinai in increments of 40 paces, stopping to catch my breath after each set. It took me 115 such increments and over six hours! My hiking buddies were extremely understanding. :)

A few years after my illness, I joined a kung fu class, explaining my limitations to the instructor. I had to periodically step out of the exercise when my lungs started to red-line, but he was understanding, as were my colleagues. This went on for years and I was able to improve my lung health by training in kung fu and eventually became an instructor, myself.

I started taking yoga, too. Yoga is great because it's low impact and starts slow and smooth, but it can be as aerobic as you and your instructor want to make it. It's a great exercise to maintain flaxibility, balance, toning and develop the breathing. I'd strongly consider looking into it. You'll want to avoid the "vinyasa" styles for now, since those are more flowing. Look for an "Iyengar" style, perhaps, which is less flowing and therefore less aerobic at first, while you practice perfecting the poses.

There are still times I get very frustrated with what I can't do and the adaptations I've had to make. But I have found a new activity I like just as much or more to replace each of the old ones. Biking instead of jogging. Long, slower hikes instead of trailrunning and power hiking. Yoga and martial arts instead of dancing. Plus I've added a few more that I never enjoyed: gardening, for example.

The human bod and mind is remarkably adaptive. Your lungs will improve (they're very resilient) over time. So some of the activities you used to do will be possible in the future, even if you can't do them with the same vigor you used to. And you'll learn to cope and you might even find that the new perspective and approach to life is, in some ways, pretty cool, too.

Good luck and remember, you will improve and you're not alone in this.
posted by darkstar at 1:33 PM on March 15, 2010 [2 favorites]

Apologies for the typos. :-)
posted by darkstar at 1:37 PM on March 15, 2010

I definitely think you should spend your recovery time pushing yourself to learn something new. I GUESS you could try a musical instrument, or a programming language, or painting, or whatever you've always told yourself you would learn if you retire or hit the lottery.

But my personal hobby horse (heh!) is knitting, so of course I think you should learn that! It can be as easy or as complicated as you want it to be, and you end up with a finished product. Few things are as satisfying as making a real, tangible thing.

Right now I'm knitting a great whack of baby hats for a hospital in Rwanda. Later this year I'll be knitting a lace shawl to submit to the state fair (I'm desperately competitive, as it turns out, even in my hobbies), and Christmas gifts for my friends and family. Plus awesome stuff for myself, of course - mostly hand-knit socks. (I'm the only one I love enough to spend 30-40 hours knitting a pair of socks for.)

And I've only been knitting for five years!

Learning a new skill is good for your brain, will bleed off some of the excess anxiety and fidgets, and give you something to focus on other than "This sucks."
posted by ErikaB at 1:47 PM on March 15, 2010

Seconding ErikaB's comment. I went from running 5-10 miles a day to sitting on the couch after an injury and went through some serious depression also. It took me several years to physically (and mentally) recover. The biggest mistake that I made was not giving my body time to heal up.

The good news? I learned to cook! It gave me an excuse to invite friends and family over to eat, which helped with the depression.

I couldn't sit still either so I tried Pilates. It wasn't aerobic, but it eliminated some of the excess energy I had and, surprisingly, built up a few muscles that I didn't even know existed.
posted by golden at 3:08 PM on March 15, 2010

I can only second what darkstar and eschatfishe say. I also know how mind-numbing the fear of recurrence and the uncertainty about the long-term outcome is. Based on our experience though, you stand every chance of getting a significant proportion of your active lifestyle back - but it will take time. My 31yo girlfriend had a big DVT in March 2007. She ran a half-marathon last summer, rides a bike five miles a day, and we can hike up hills only a little slower than we used to. She gets puffed out easier than she'd like, but it's absolutely not life limiting.

I'll not lie, though: the first six months are tough. Anti-coagulant therapy is no fun, the dose is a bitch to get right (plinth is absolutely on the money up there) and it made her tired and lethargic. You'll really want to ease into exercise and you can set yourself back, or even do yourself further serious harm by doing too much too soon. PEs kill a lot of healthy people without warning: you've genuinely had a brush with death, you have some serious getting well to do and the rest of your life to do it - let yourself do it slowly and surely.

IANAD, but as you'll be worrying we were told PE recurrence is very rare once you're on anti-coagulants and your INR is in the right range. Know the warning signs though and *don't hesitate to call an ambulance* if you see them: you'll need treatment immediately. Also don't be surprised if you're much less worried about it than your family are - I went nuts every time my girlfriend coughed or made a noise in her sleep for the first year. Make allowances for their worry, and don't hit them with things too often :)
posted by cromagnon at 6:13 PM on March 15, 2010

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