Pacemaker recipients: Looking for support from others

Hi Peach414144-

My name is Sherry. I read your post and it intrigued me as I was recently diagnosed with hyperparathyroidism. I had my first pacemaker implanted due to severe bradycardia (heart rate of 38) back when I was 29 years old. I am now in 55 and going strong- relatively speaking. I am not sure about a pacemaker helping with A-fib secondary to hyperparathyroidism but thought we could share stories and perhaps help encourage one another. I work full-time as a 911 dispatcher and volunteer part-time as a paramedic. If I can help you in any way, please let me know. I am an open book and will gladly share my story if it will help you.

Blessings,
Sherry

Thank you for sharing. My story is complicated. Two and a half years ago I was seeing a nephrologist for a problem with the kidneys. The doctor did not let me know that I had secondary hyperparathyroidism due to the kidneys. He let me go on without telling me of the diagnosis. As time went bye as now it it two and a half years later. I was suffering with much pain and bone problems, etc. I finally went to another doctor who gave me the diagnosis. I am now rotating from type three to type four kidney disease. It is to be noted please that for about thirty years I have been suffering with hypothyroidism. So I have my ups and downs. It is quite painful now and cannot walk but for a very short distance. (So I stand in one spot nd dance to the rhythm.) None of the doctors, be it endochronologists, nephrologists and cardiologists do or change any of the medications. I have been having AFIB for much of this time and without anyone knowing of the HPTD nothing was addressed for the treatment or treatments. Deliberate or just a doctor who should not be practising? The AFIB is serious now as I feel the beat in my neck and it pounds much more often now and am short of breath. It even wakes me up at night. I asked the doctor would a pacemaker help but I was told no. Grasping for straws I contacted Norman Parathyroid and am going to Quest for another blood workup to be sent to Norman. Also I am trying to sell my home and move to a more sophisticated medical area. Imagine at my age of 84 moving. I might have the heart attack that would end all my problems. And now to add the last but the most important item; I am starting with dementia. Asking for help I am told because of this Covid Hysteria that there is no help at this time, So moving on if I live through this you will hear from me again. Love to all Peach

Good morning Peach414144-
It was so wonderful to hear from you. I am so sorry you are suffering so much. I don't know how much help I can be, but I am a good listener and we have quite a bit of medical history in common. My story is the reverse of yours to the T. I was diagnosed with severe bradycardia (slow heart rate of 38-40 beats per minute) when I was 29 years old. At that time, I was continually told by a local clinic that I was "too young" for a pacemaker. I have had a pacemaker for the past 30 years. They typically last about 12-15 years depending on how dependent your body is for the pacing need. Working as a paramedic, I can share with you that we don't typically see pacemakers implanted in patients with a history of Atrial Fibrillation as the pacemaker itself does not treat the A-fib. In patients with A-fib, the pacemaker is commonly used to treat the underlying slow heart rate which happens with some patients in A-fib but not all. More often than not, with A-fib we typically see elevated heart rates. A better treatment modality for A-fib would be medications to prevent blood clots and strokes in patients that suffer from it. There is a newer medication called Exoaban that has been cleared by the FDA for this type of use. You might want to ask your physician about that. In addition, most cardiologists prescribe beta-blockers or calcium channel blockers to treat A-fib as these drugs are effective in reducing the heart rate. As a prehospital healthcare provider, the biggest concern I typically see in my patients that have A-fib is the possibility of a stroke. (Please don't be alarmed, this is quite common. Just be familiar with signs of symptoms of a stroke: facial drooping on one side, slurred speech, and unilateral weakness on one side of the body). Strong precursors for strokes in A-fib patients can be caused by uncontrolled hypertension (high blood pressure, so you may wish to have someone check that for you regularly. I reside in Minnesota, and our ambulance service provides free blood pressure checks to anyone who calls. This might be an option for you in your area as well. I will be honest in that I don't know a ton about HPTD as I was just diagnosed in August 2021. I am doing some research on that topic and will let you know what I find out. Please stay encouraged and know that I care. I will share more after the weekend.
Wishing you a peaceful day.
Sherry

Thank you for caring and sharing. My problem is a revolving one. I have hypothyroidism for over thirty years. I now have primary hyperparathyroidism (which was originally thought to be secondary hypothyroidism). It is doing death to my kidneys. Finally after much complaining the doctor wants to do a nuclear test on the parathyroid's and whatever else is part of this. It truly frightens me. I am reaching out to Norman Parathyroid in Tampa for help. My mind goes around in circles and is also being affected by this. What a trip this is as though to the moon and back or perhaps Mars. Hangin on with all my might. There is the posability we will be talking again. Peach

Hi Peach - I saw your name pop up, and even though I don't have a pacemaker, I thought I would take a look.

I see you are dealing with hyperparathyroidism, and working with your docs to try to solve the puzzle. You mentioned fear of the nuclear scan - is it the word that is making you anxious, or have you had a problem with a scan in the past?
I recently had a nuclear scan to diagnose a different problem, and having had them in the past, I was a little nervous myself. I remember many years ago, when they did a scan on my thyroid, that I had to isolate for 48 hours afterward and even stay home from work.

My doc and the ER doc were surprised by my reaction and kept reassuring me that it was "no big deal." I arrived for the scan, and asked what my limitations would be afterward - the tech was surprised until I told her about my previous experience. She said the process has been refined, and the equipment is much more sophisticated now. Much less radioactive material is used than in the past, what there is is eliminated quicker, and there are no restrictions.

I hope this will help ease your anxiety - if lying still in the machine is a problem, you could ask your doc for a pre-med to make you feel better.

I hope the tests will find the source of your problem. Good luck!
Sue

Thank you, thank you, thank you. But.....what is this lying "In the machine"? I am claustophobic and have PTSD. I was never told this. Is this an MRI MACHINE? THEY DO HAVE OPEN MRI MACHINES NOW. But the open one I have used you must be sitting up and not lying down. And now with this AFIB I must be very careful of taking drugs. You have not confused me but have given me important information that I need to know. I will now call ack to get the full information that I should know about. Again I thank you for being so thorough. For I have to pay a driver (Low vision) cannot drive.) And, how long will the driver wait. I will not get used to this dependency as I was the one who did the caring for. Working hard on this physically and mentally. Will let you know.

No, not inside a machine. It is a special camera, but to get the image they need you lying very still. Here is a description of the procedure: https://www.peacehealth.org/peace-harbor/services/imaging-services/nuclear-medicine/Pages/parathyroid-scan
Be sure to find out in advance any medications you need to stop, and for how long. In my case, I was instructed to take all of my usual meds.
Sue

You are a very wonderful and informed person who shares her knowledge and you must know how you genuinely help others including myself. I thank you sincerely,
Please take this seriously as I am embarased to say that I have a hiatal hernia and Gerd. I must have my head elevated somewhat to allow breathing. I want this test it is needed to keep me alive but can the test still be performed this way?

I think so. Discuss your concern in advance with the Nuclear Medicine Center you will go to, so that they can plan how to do it. For mine, I was on my back, with a 15 degree wedge under my head & upper back and a pillow under my knees.. It wasn't a super hard surface like a CT or MRI machine, but you need to be quite still.
Sue

The hospital here in my county says "Just come and you will see". Anyway there is no surgeon specialist in this county. So this Legally "Low Vision" blind person will hire a driver, rent a car and hotel rooms and travel the 200 miles south of here to go to an accredited hospital and surgeon (if need be). And then be so broke that it will take two years to be solvent again. When I moved here I was not aware of the low medical standards of this county. It is so bad that this 84 year old woman is looking to move. Wow! That certainly speaks for itself. Either that or do a Hari Kari.