I’m thankful for my pacemaker

I have been ill since Sept 15. I've had coughing, chills, vomiting and high fevers. My pcp sent me to the emergency department three times. There were various theories including viruses but no definitive answer. Finally, on Oct 23, I was admitted. I was there for five days of 68 tests including bloodwork, ct scans of the abdomen, pelvis and chest. I had chest xrays ekg, echocardiogram, and tests for everything you can imagine. 

I had an infection and it was elusive. A team of specialists including pulmonologist, gastroenterologist, ear nose and throat, hemotologist and infectious disease doctors tried to figure out what was wrong. 

Finally, on day five of hospitalization, the infectious disease doctor found anaplasmosis and ehrlichiosis-tick borne infection. It's not lymes disease. It's worse. The tick is as big as a poppy seed, it bites and stays on 12 hours but you don't know it. There was no swelling or rash and this kind doesn't leave a bull's eye mark. Symptoms don't show up for up to a month. My platelets were diminishing and my spleen enlarged as well as a slew of liver issues. The treatment is doxycycline. My history is being unable to take that but they insisted on it. So I am being given zofran to keep the nausea down, then doxycycline then three hours later, Tums. 
 

I came home from the hospital on day nine. I'm still on the meds as well as two inhalers. It seems that I concurrently developed bronchitis and Epstein Barr. 
 

Part of my symptoms, which is getting better, is vasovagal near faint when going to the bathroom. I was surprised to almost blackout, but my pacemaker kicked in. I felt very protected by it. It was doing its job saving my life. 
 

My echocardiogram was an interesting experiment. I was asked to let a student do it with a tech supervisor. I always agree to students because we need more skilled people. The male student was very young and careful of my modesty. He was very gentle pressing with the device. Then the tech took over and the student asked me if the tech pressed harder than he had. I told him yes but he will learn. Lol

My echocardiogram shows no change in the over two years that I have had my CRT-P. My ejection fraction remains good. There had been concerns about lead infections but all was well- no vegetation!
My report:

FINAL IMPRESSIONS:

Technically difficult study.

Normal left ventricular size. The left ventricle has normal systolic

function. The estimated left ventricular ejection fraction is 55-60%.

Normal right ventricle size. The right ventricle has normal function.

The right atrium is mildly enlarged.

Diastolic function could not be assessed due to indeterminant data.

Catheters consistent with dual chamber pacemaker leads seen in the right ventricle and right atrium.

No vegetations identified.

As compared to 6/17/2021: There is no significant change.

I am fatigued but improving. I live in a semi rural area with a herd of deer regularly in my yard. I have lived here 50 years and no one ever has had a tick bite. I'm going to have to use DEET every time I am outside. 
The infectious disease doctors said they're seeing more and more of this tick borne infection. They also said that 90% of people end up testing positive to Epstein Barr virus as they get older. 
 

In any case, I learned a new respect for my CRT-P. My heart rate remained consistent. My heart hasn't gotten worse for having it. I'm grateful to God for the courage He sends as well as the fine medical team's work. 

13 Comments

sorry, but glad to hear

by new to pace.... - 2023-11-06 08:16:12

Thank goodness they continued searching and now you are on your way to mend.

new to pace

Sorry to hear

by Penguin - 2023-11-06 08:16:41

Lavender, 

So sorry to hear about this. You really have been through the mill.

I'm pleased to hear that you're improving finally and that your doctors got to the bottom of the problem. 

Will the Epstein Barr require further consideration and treatment? 

Sending best wishes for continued improvement in symptoms.

 

Epstein Barr

by Lavender - 2023-11-06 08:28:09

Thanks new to pace. Each day a bit stronger. 💓
 

Penguin-there's no treatment for Epstein Barr. Rest and fluids. It's a virus, so no meds for it. 
At first I could barely get enough energy to speak. Going up stairs was like legs were lead and it wasn't heart related. I am sleeping more. 
Pcp says in two more weeks will feel much better. It takes about 4-6 weeks to regain energy. 
Thanks for your kind comments and wishes, very much appreciated.💕
 

 

Success Story?

by Gemita - 2023-11-06 09:42:56

You are one very brave lady and one who will never stop believing.  Your strong faith is there for all of us to see and I am relieved that your doctors and heart device too have also played a part in keeping you safe.  I and others have missed your hugs and affection but I knew you were absent for a reason. 

Despite your pacemaker lead problem, I am glad that your symptom of near faints is still being adequately controlled.  I would imagine these near faints could be happening too because of some of your meds, including the inhalers and all the investigations, antibiotics and difficulties caused by the anaplasmosis and ehrlichiosis-tick borne infection as well as your earlier period of bowel dysfunction.  I always feel faint when my bowel is under attack.

I am reassured that no vegetations were found on your leads. That would have been a worry.  I note you had a technically difficult study.  I won’t be rude but I sometimes wonder if that is due to body shape, size and the like as well as operator technique, experience and placing us in a sub-optimal position?  I always get technically difficult and sub-optimal views comments too, but I am glad they were still able to rule out vegetation growths for you.  

I see that all chambers were okay except mild RA enlargement and that your ejection fraction is still excellent.  Wow, after going through all of this - just shows me how well CRT pacing is working for you.  I think you have a lot to be grateful for and I know that this will carry you forward.

Lavender, it will be a slow process of recovery, a long road ahead, but all the signs so far are good.  I send you my warmest wishes (and hugs) for better health 

anaplasmosis and ehrlichiosis-tick borne infection

by Good Dog - 2023-11-06 09:48:31

I just want to wish you well. It seems that you have received some great care and since they finally got to the bottom of the problem, it will hopefully lead to a rapid resolution of the symptoms. There isn't much worse than being ill and not having any idea what or why. I looked at your bio to see where you are located, but you left that blank. The reason I looked is, because I lived in central NJ for many years and I have to tell you; it is almost impossible to live there without finding a tick crawling around somewhere on your body anytime you go outdoors. I once went to a park in NJ and sat on the ground to eat lunch. Not for long, because when I looked down I could actually see the ticks crawling around. They were thick! However, as you described the one that passes the infection you contracted is barely visible. In any case, I came to hate those little buggers. I am sure they serve a purpose, but I don't know what it is?

I am just happy to know that you are on the path to recovery! I also want to say that I can identify with your gratitude for your pacemaker. I feel exactly the same.

Please keep us posted with how you are doing..........

God Bless..........

Sincerely,

Dave

💞

by Lavender - 2023-11-06 10:12:59

Gemita, that's the first time I saw it was a difficult study. I am petite built at just over 5'1". I'm thinking it was the student's manner? I'm grateful for your unwavering support as you keep track of our family here. 
I am wondering too about effects of the albuterol and fluticasone inhalers. The zofran and doxycycline can cause issues too but must be finished. I take zero meds on a regular basis and am very sensitive to them. 
 

Dave-Thank you for the blessing. May God also richly bless you. You're always so kind and wise. I live in the Northeast but not as far as NJ. I'm so disappointed that my beautiful woodsy flowery yard is now a threat to me from ticks. I moved here as a young girl. It was totally rural. Since then housing development has stripped most of our forest and left the wildlife with no refuge. I'm seeing much more deer, a bear, squirrels, chipmunks, opossums, skunks and a couple really long rat snakes. 😵‍💫

There is now a herd of about 15 deer who wander through my dead end street neighborhood. No natural predators. I live as much as possible in my yard with a firepit and other spots to relax. I feel violated knowing the dang ticks are out there. I may look into a tick spray company but then again it won't last long because of the wandering deer. I will wear light colored clothing, tuck my pants into my socks, and spray with DEET as the infectious disease doctor said to do. May God curse the ticks and remove them from the face of the earth. 😩

Wow

by Laurette - 2023-11-06 12:23:13

You are an incredible lady, strong and very inspiring. Wishing you bright days ahead.

deter the ticks by growing plants they hate, or would the deer eat the plants?!

by Gemita - 2023-11-06 15:09:32

Lavender, yes I am petite too but they keep mentioning “Sub optimal views due to body habitus” and there is nothing of me!  I am going to take this up with my consultant and suggest that my next echo is done down my oesophagus - trans oesophageal echo as opposed to trans thoracic echo - more invasive but perhaps will give clearer images for once and for all.  Yes I expect your student didn’t quite reach the right places but I think they felt they still had an “adequate” study to confirm the results, since missing any infection (vegetative growths) would have been serious, so please don’t concern yourself.

Oh I don’t know what can be done about those nasty ticks. Have you tried planting tick-repellent  plants like garlic, sage, mint, lavender, rosemary and marigolds, some of the effective tick-repelling plants?  Or tie cuttings around your legs while you are in the yard as well as using your repellent.  I have an infestation of moths (larvae) this end that are eating my carpet in one of the bedrooms.  I don’t like using sprays but I may have to Lavender since I have tried natural remedies

Plants

by Lavender - 2023-11-06 16:13:56

Gemita, excellent thoughts on plant deterrance. I have sage, lavender (of course) and marigolds around the house. The deer eat every leaf off the euonymous and rhododendrons in the winter but they recover. 
 

I know it's controversial but I blame climate change. We used to get heavy deep snow that lasted November til late March. It's 60 degrees today and has been for a while. Barely any snow the last two years. The snowblower was only used once. And of course, heavy residential development has removed natural habitat. 
 

From a magazine: "As with so much else, climate change is playing a big role in extending ticks’ breeding and biting seasons. Brief, mild winters and long, hot springs and summers are incubators for ticks, especially in the Northeast and the Midwest, which once featured punishingly cold winters, but increasingly do not."

 

As for the trans esophageal echo-🫨they discussed that with me at the hospital when they were in investigating my leads. I would have complied as they said it's similar to an endoscopy, but I am glad they didn't have to do it. 

Thinking of You

by SeenBetterDays - 2023-11-06 16:46:49

Lavender, I am so sorry to hear all that you have been through lately, what an ordeal. I am relieved that they were able to pinpoint the cause but it's disconcerting to know that this could so easily happen. I have been watching David Attenborough and his Planet Earth programme and he warns us about the impact of humans on the environment and how things are changing. I think you are so right that the seasons are now utterly confused and our wildlife including insects along with it. I hope you are still able to enjoy the outdoors with long clothing and Deet at the ready. You are such a kind, caring and compassionate lady and are always there with support for members of the club. I am sending you hugs and best wishes and hoping you are back to full strength soon. You are amazingly strong and I can see that you have come through a lot of incredible life challenges before this one. I am so glad to see that your pacemaker is doing its job and keeping you safe. I am thinking of you and sending you much love.

SeenBetterDays

by Lavender - 2023-11-06 19:24:19

Oh dear seenbetterdays... what a lovely comment. I'm so touched! I certainly felt shaken while awaiting the diagnosis and treatment. I actually told the doctors that I will die and my autopsy will reveal what was wrong with me. 😩

I don't trust going outside yet but will eventually do so. I'm going to cut back on my flower beds. I'll be ok on a riding mower but not standing amongst my plantings and weeding anymore. 
I heat with two woodburners and have always harvested, split and stacked wood. Might rethink that too and have split wood delivered in a couple years once I use up all the wood I prepared this past year.

Your hugs and love feel like a comfy blanket. Ahhh. Thank you. It's just what I needed💞😘 What a wonderful bunch of folks. 

See better days

by skigrl3 - 2023-11-11 19:48:41

Lavender, best wishes to better days. Lyme, anaplasma and the like can be pervasive, for sure. I have been on the lab side of things over the course of my career and have seen it first hand..Keep us posted, take care.

Thanks skigirl

by Lavender - 2023-11-11 20:06:41

I feel stronger. I have been dressed and out twice (for a mammogram this morning and once for a short errand run but I didn't drive). I'm good for a couple hours that way then back to pjs. I do feel better stomachwise now that the meds are done. I slept seven hours last night for the first time since September when this started. I'm halfway thru the one month recovery. I'm seeing the ear dr Monday to maybe get tubes because the ears are still clogged. On Wednesday the pcp will assess the anemia and potentially add an iron infusion if needed. 

Hard to believe how sick a tick bite can make you. 😵‍💫

Thank you for your supportive words 💕

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