Still have exhaustion problems
Very very athletic age 67 - swimmer up to 7500 meters a week until sudden fatigue, dizziness curtailed everything3 months ago. Had panicked and futile visits to the ER corroborating that most medical people would rather see you in trauma or dead. Finally, after all the indifference and brutality, two months go by of total contradictory, rude confusion by medical people, and then after the stress / echo / 24 hour monitor, I had a PM inserted 6 days ago. Fatigue still a problem, esp. heavy legs. Hardest 2 things: continued indifference of medical people and getting adequate rest since having this thing in my chest limits postions I can sleep in. Already had sleep problems - now it is severe and exhausting. Tried some things: used pillows so can sometimes sleep partially face down and change positions without direct pressure on the PM. Not ready for left side yet, but chest seems to be healing. No redness after removing outer bandage on 3rd day. But still the waves of fatigue and very heavy legs. Short days, bored out of my gourd, and totally frustrated and depressed at extreme, chronic exhaustion. Experimented on the treadmill today: instead of resting I ignored the heavy legs and did two sessions of about four minutes on the treadmill in between playing music on my recorder flute. I walked at a very low rate of speed and my energy rate increased a bit and my heavy legs were aleviated a bit. But after a while the heavy legs have come back. No chet pains. Perhaps I am retraining my body??? My energy level has considerably improved. I've always loved exercise. Maybe my body needs to get used to the minimum heart rate of 60 instead of 30's and 40's all the time, but be coerced into exercising again. Doctors and nurses have learned to minimize and redefine whatever I speak to them about. I think they still want me to die???
Any comments?
walter878@juno.com 727-204-8189
5 Comments
LISTEN.
by qwerty - 2010-04-14 09:04:05
Listen to your body. Let it heal! It has only been 6 days. You had surgery.... give yourself some time to heal.
Frank, as usual was on target. I know that my HR was very low for at least 6 months before I got my PM. It was probably low even before that. I too was involved with several Doctors. Neither of the first two thought there was any real problem. The third Doctor I went to, I went for a 2nd opinion and to follow up, and to change Doctors because the first Dr office folks kept sending me to places that didn't take my insurance for tests. I know those office staff see a lot of folks, but come on.... send me to one facility that costs me $500 out of pocket expense or to one there is no out of pocket expense. It doesn't take a rocket scientist to figure that one out. Anyway, when I went for the 2nd opinion, I told the Doctor I was feeling OK and other than being tired, I was fine. He said that was great, but he wanted to do a holter monitor, and an echo. He said he would follow up in 6 months and redo the holter at that time to determine if there had been any changes. This sounded great to me. 6 months with no Dr. Appt. So I said OK. Well, needless to say, I never made it the 6 months. When I turned the holter back in, they called me that day and said, do you want your pacemaker today or tomorrow. It seems I had 16 pauses of almost 4 seconds in one minute over night. And of course the HR was only in the 20's over night and in the 40's during the day. Now with all that being said. The blood flow to my body was not adequate while my heart rate was so low. This took a tole on me and it was so gradual, I was un aware.
I was pretty lucky, because I could tell some difference when they put in the Pacemaker. I immediately noticed I didn't have to have 12 hours of sleep to function. I also noticed that I was a lot more alert during the hours I was awake. Not anything you could put your finger on, but 3 weeks later when I went back to work, there was a definate difference in my abilty to concentrate and I didn't feel like I was full of lead all day. I actually had energy and have started takeing my 15 minute brake in the afternoon to walk instead of just trying to stay awake.
But.... it is taking some patience and time to build up my strength and muscles and allow my body time to get used to being healthy again. Frank was right that having this low heart rate for a while takes its tole and it takes a while to build everything back up. My current Doctor saw me at 6 weeks and he noted it would probably be 6 months before the PM was settled into where it would be and all the healing would be done and the effect of having good blood flow again would be fully realized.
So, while everyone heals differently, just know that your body needs time to heal. Your mind needs time to adjust. Take it easy and give yourself a break. Yes, work on building your strength back up, but listen when your body says "give me some rest".
Welcome to the PM club. There are some great folks here.
Still exhausted but encouraged by you all - thank you!!!!!
by ansbible - 2010-04-14 09:04:12
I thank you all so much for your comments. Somebody listens. I think the key is to persist in getting solutions without being extreme. My energy level jumped overnight this 7th day and I am walking much faster. It makes sense that I will have to gradually build up my body - mainly walking and as you all have implied or said: listen to my body. Good advice not to jump the gun too quickly and increase exercise. I probably won't go swimming for months as the stretching of the chest muscles is too extreme. I will be spending more time on the indoor treadmill that my building offers. There is one danger however: coming in contact with fellow grouchy seniors. As soon as I am through with this I am changing my doctors. Carefirst has provided intervention consistently pushing the office staffs to do their jobs when they would ignore me for days. So now their service is relatively expedient, but it took three months. I am sure you all have your horror stories to share too. Carefirst even implied that my case was such that I might want to file a grievance, but it would have to be made against about a dozen people. I concluded that most medical people in America are indifferent and arrogant with patients and get aggressive and arrogant when challenged in the slightest. Thanks again. Looks like I'll survive.
Stretching chest muscles
by ElectricFrank - 2010-04-15 01:04:39
Don't overdo it, but be sure your chest muscles get some gentle daily stretching. Otherwise, they will get used to the inactivity. Same with shoulder movements. We have had several posts here over the years of people developing "frozen shoulder" problems from being too protective. The key is moderation.
frank
Making progress but I have a diff. body
by ansbible - 2010-05-26 10:05:43
My way back to better living / health has in view that my body is not the same body I had 6 months ago. I am totally out of shape and get tired easily. So I have designed a program of coming back to my home and taking a nap before I persue plan from playing music in the park for 2 or 3 hours to going home eating lunch and taking a nap for 1 to 1 1/2 hours then going out shopping, swimming, etc. as my body can handle it - or staying home. My energy level does not come back nearly so quickly as it used to and it drops off the cliff every day, so I have to atune myself to the telltale signs of oncoming fatigue then stop what I am doing and getting rest. There is no second wind or working through the fatigue to do one more thing. So my plan to recover is long term. 3000 meters of intensive freestyle in the pool 3x a week is now 1000 of slow and easy and stopping as soon as I feel the signs of drop off fatigue. So far so good. Any comments?
You know you're wired when...
You have a 25 year mortgage on your device.
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Good luck with your surgery. It will improve life amazingly.
Healing
by ElectricFrank - 2010-04-14 01:04:01
Normal healing takes 2-3 weeks in most people. A good guide is how long it takes for a paper cut on a finger to heal.
Sleeping on the pacemaker side isn't feasible for a while. It is easy to pinch the pacer between the collar bone and ribs. The same with reaching across from left to right like in putting on a seat belt. As much as possible avoid those sort of things so as not to irritate the area.
Making that pocket under your skin for the pacer is a brutal process. I was totally awake with no meds other than local anesthesia during my implant, which let me experience what they were doing. While it wasn't painful I could feel the pressure of tearing the skin loose from the underlying tissue. It is kind of like tearing the skin off a chicken. That is bound to be sore for a while.
As far as the low energy you are experiencing it may be due to the 3 months you went needing a pacer before you got it. During that time your body was deprived of good blood flow, and organs including your brain can be affected. Once you have the pacer the healing process begins and may take a few weeks to months depending on how great the effect was. When you read about some of us that had an immediate surge of energy we usually got our pacers quickly. In my case it was only a few days after my block appeared.
Finally, it doesn't sound like your medical people are very helpful. You don't have to take that sort of treatment from them, but you have to be willing to take control of the situation. Let them know that you aren't satisfied with their approach and that you are considering changing docs (if that is possible).
By the way they don't want you to die. Dead people don't bring in the $$$
frank