Here's my story

Some responders to my earlier post about leg pain urged me to tell my whole story. 

I was a fairly healthy 60+ year old with Sjogren’s Syndrome, not bad enough to require medication, just keep water handy at all times for dry mouth.  I got Covid in April 2021 after being vaxed, luckily a mild case.  In late summer 2021, I started having an increase in shortness of breath incidents like when climbing stairs or carrying boxes.  I dithered over whether it was serious enough to call doctor.

One day coming out of work I walked up the long slope from the office door to my car and had a really severe attack of panting fast, like a dog after running a mile on a hot day.  I sat in car until it passed, maybe a minute or so.  I stupidly went home and didn’t do anything about it, and had a normal evening.

Next morning I was getting ready for work and didn’t feel right all of a sudden, can’t pinpoint what was wrong, wasn’t dizzy or faint, just something wasn’t right.  Sat on kitchen floor for awhile and the feeling didn’t go away, so in the end I called 911.  Luckily I was with it enough to ask EMTs to take me to the hospital in town that was in my insurance network.  It’s a small rural hospital, only a level III trauma site.

Once in ER, they routinely tested me for Covid and to my astonishment they said I was positive; I had no symptoms. EKG showed a Mobitz type II heart block, they said.  Then while talking to doctor, had another of the rapid panting attacks.  The laid me flat and put a transcutaneous pacing device on me, I think heart rate had dropped to 20.  That was extremely uncomfortable, later they told me they had given me fentanyl and some other drug to make me feel it less, but the drugs didn’t do a darn thing. I felt every one of those electric shocks, and had a lot of trouble holding still while they were trying to put a transvenous pacing device in my neck vein; they had trouble with the first try and had to try again on the other side.   Eventually they got it and turned the transcutaneous thing off, what a relief. 

A cardiologist happened to be on site that day and he arranged to have me flown to the affiliated hospital (level 1) in a bigger city about 60 miles away.  I subsequently had a lot of trouble wangling with insurance, which claimed that the helicopter was “not medically necessary” and didn’t want to pay for it.  Like I was in any state to argue with the doctor’s decision that day. 

Once I got to the 2nd hospital, I got a room to myself because of Covid, I suppose.  Laid there for hours trying not to move so I wouldn’t dislodge the transvenous pacing, and the room was next to the nurses’ station so they could check on me frequently, so I guess they thought I was in real danger.  After awhile they decided that I would get a permanent pacemaker later that day.  It was a real trial not being able to drink anything all day with a dry mouth problem, but eventually a nurse brought me a small cup of water and sponge sticks so I could at least moisten my mouth. 

About 5:30 or 6PM they took me down for the procedure to have the permanent PM, I guess I had to be last one of the day because of the extra cleaning that is needed after a Covid patient.  Everything went smoothly, and I was able to finally have some food and water afterwards.  I was in the hospital till about 4PM the next day, but then another problem cropped up. I don’t have any relatives nearby, and how could I ask a friend to get exposed to Covid if I asked them to drive to the city to pick me up, they’d be exposed to my Covid germs for more than an hour on the ride home.  Finally found a friend who was willing to come, I sat in the back seat and double masked and luckily she didn’t catch it from me.

There’s more detail I could tell but this is long enough.  Doctor didn’t think it was caused by Covid.  Later had a sleep test that showed I have apnea, and now have a cpap, but nobody’s ever said to me they think apnea was the cause of my heart block/bradycardia.  It took 20 months before the hospital bills were finally settled; that was a real trial having that hanging over my head for that long, being afraid to spend any money for fear I was going to get socked with a huge bill.  Two years on I’m doing pretty well, being paced 100% of the time at last report, but able to mow the lawn, shovel snow, and do all normal activities.  So for you newbies, I am an example of how it’s possible to get through the overwhelming shock of needing a PM on an emergency basis, but having things come out all right in the end. 


3 Comments

thanks for sharing

by new to pace.... - 2023-08-09 23:23:47

Sorry you had to go though everything.  Glad you came out of this with a postive attitude.

new to pace

That is quite a story

by Gemita - 2023-08-10 06:46:34

Lillian, thank you so much for your post, describing everything that led to your need for an emergency pacemaker implant, even in the presence of a Covid infection.  I am so glad the outcome was a good one and that you are now able to do most, if not all, of your normal activities.  

It is hard to know what might have caused your heart block.  There is no doubt that sleep apnea which can cause long pauses between heartbeats (heart block) can be a common trigger for many arrhythmias, particularly Atrial Fibrillation, so perhaps sleep apnea was a trigger for the development of your heart block?   Drops in oxygen levels during sleep can make our hearts beat faster and cause high blood pressure, possibly leading to coronary artery disease and strokes.  Severe sleep apnea may even cause our hearts to enlarge so I am very glad to hear that your doctor looked for this possibility and you now have a CPAP machine to protect you at night.

When my Atrial Fibrillation and other rhythm disturbances were first seen, my doctor looked for sleep apnea too.  I had an in hospital sleep study which confirmed many sleep related problems as well as some mild apnea but I chose not to start CPAP, practising side sleeping instead.  I just couldn’t tolerate any of the masks which interrupted my sleep even more, although my sleep consultant and team tried their very best to help me to find a suitable one.  Anyone with moderate to severe sleep apnea should persevere in finding a suitable mask because sleep apnea can be so dangerous.

Thank you for telling us your whole story.  It was well worth waiting for and may help members to seek early help for their symptoms.  Rapid panting attacks are just not normal and may indicate a serious illness like an infection (pneumonia, ?Covid), heart rhythm or respiratory problem.   At worst, rapid panting could indicate a blood clot in an artery or in the lung or heart failure, so you did well to get help.

Somewhat similar experience

by Johnxyz - 2023-08-10 18:39:39

I am glad you are doing well.

I had an emergency pacemaker implant also. My problem was a sudden progression of heart block 1 to stage 3 heartblock. Pulse went to around 30 and I would get dizzy or faint when even standing.

After the pacemaker was installed it was like a miracle. All my symptoms were corrected and I was immediately able to do anything I wanted with no ill feelings or diziness.

I am paced 100% of the time in bottom part of my heart 0% on top part.

It was amazing to wake up after the operation and have my heart block 3 completely corrected by the pacemaker.

Of course it took me 12 weeks to completely recover from the lead placement. When the Doctor found out how active I had been before all the problems he decided to keep me in the sling for my right arm for 4 weeks and then under restrictions for another 8 weeks. After that it was no holds barred and I can do everything I normaly did before the Heart blolck 3 - lift weights, run,  bicycle,swim use Total Home Gym etc.

I am very thankful for modern medicine, Doctors and Nurses and Medical Devices that can completely reverse the affects of this conditon!

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Today I explained everything to my doctor, he set my lower rate back to 80 and I felt an immediate improvement.