Life Updates

Posted by abakersp in Wondering Wednesdays Posts / 10 Comments

Welcome to Wondering Wednesdays, a weekly post to learn more about me and other bloggers 🙂 If you’re a blogger, please join in every week!

Today’s question is –  I’m actually skipping the question, and providing a life update 🙂

Hello my friends. It’s me, the absent blogger. Some people say they are glad to be away from 2020. Me? I’ll be glad when 2021 is over. This has been a very difficult year for our family, and while I don’t typically go vocal about these kind of things, I feel like maybe that should change. So here we go…..

Some of you may know or remember that I had a hysterotomy in January. The surgery was textbook. There was no complications, I was able to go home the next day, and I didn’t have a lot of pain. It was at that time, however, that a new medical issue began (they are not related according to docs). I had a hard time getting around. Seemed like every time I would walk, go upstairs, try to do anything that involved physical activity, my heart would start racing I would lost my breath. At first I thought I was just healing from the surgery.

A month later I was still having the same issue. Two months later, still the same issue. Clearly something was wrong, and my surgeon said that it wasn’t from anything surgical so it was time to check in with my regular doc. I’ll spare you the boring details, but I will say that I had test after test after test. Months of testing, and questions and waiting. And still, had breathing issues. Finally, months later (this month to be exact), we got somewhere. Sort of.

I have a few things going on. One of my valves in my heart is thickening, but it’s not at a point that it needs surgery or anything thankfully. But something to be aware of. My heart, for reasons we still do not know yet, beats too fast. I can’t say or spell the scientific term they used for it lol. But essentially my resting heartbeat is faster then it should be, and then as soon as I try to get up and do something physically, it shoots way up high. This makes my blood pressure skyrocket too. Which is why I get so out of breath.

I have had to take it super easy the past couple of months. I’m not supposed to exert myself, or get upset (easier said then done), and essentially avoid anything that would speed up my heart rate. And that will continue for a bit while we try to figure out how to treat this. I have started taking medication to lower my heart rate. Started on one dose, and that didn’t do anything so now I’m trying another. If this doesn’t work, then I’ll have to see a specialist. But the fun doesn’t stop there. I’m not allowed to have caffeine, except for one cup of coffee in the morning that I nicely asked (aka begged) the doc for, and I have a very limited sodium intake daily allowance. 1500 mgs, which is equivalent to less than a teaspoon of table salt.

This diet is a shock to my system to be honest. I’m a salt junkie, which honestly is probably part of the reason I am in this mess to begin with. But there is sodium in EVERYTHING. I mean, things I don’t even think about have sodium. I have a lot more research to do, and I’m only in the beginning. It is hard, I’m not going to lie. I have to keep a journal of what I eat along with the sodium intake. My diet mostly consists of fruits and veggies and bland tasting food, and I am hungry all the time. But until I can find recipes that are low sodium, and figure out how to navigate meals and snacks, I’ll probably be cranky and irritable lol. It’s going to be a long road, but doable with family, friends, and the Lord.

But this isn’t all.

I also have sleep apnea, which contributes to me being tired all the time. I’ll need to get a CPAP once insurance approves it. It was scary to find out how much I stop breathing during the night. SCARY. But there’s an answer. I am slightly fearful of the machine, mostly because I am claustrophobic, and move around a lot in my sleep. So hopefully there’s a machine that will work with this!

But this isn’t all.

My daughter has some of her own health issues. She is tired all the time, and not just like you and me tired. She’s exhausted. They’ve tested her for everything and nothing comes back abnormal. We’re going to continue seeking different doctors until we can get some answers. Please pray for her!

And this still isn’t all.

A couple weeks ago my husband had an issue that landed him in the hospital. He stayed the night, and required further testing. Turns out he has a cancerous tumor in his bladder. He’s getting it removed tomorrow. I’m thankful the surgery was so quick. We have no idea what will happen after that, we’ll have to wait for the pathology report. But it’s scary. The “C” word is always scary. The unknown is scary. And my husband is a transplant patient, so that makes it even scarier since his body doesn’t really have to ability to fight anything.

We’re trying not to worry too much until we have to, but it’s hard not to. And my heart? Well let’s say the keeping my stress levels down have been super difficult. But I know I need to remain calm through it all so I don’t put myself in heart shock.

Needless to say, I’ve been so overwhelmed by all of this that blogging and reading has taken a back seat. Even social media has to a point. I miss it. Please know that I miss it. And hopefully I’ll do more soon. But for now I need to concentrate on research, and figuring out foods to eat, and making sure my husband and daughter are ok. I know the Lord will get us through. But I’m still human. I have concerns and fears just like everyone.

All this to say, thanks for sticking around even though it’s limited at the moment. And our family would really appreciate your prayers. Especially for the surgeon tomorrow! Thanks for being my friends. My family. I love this bookish community more than you’ll ever know.

Jessica

10 responses to “Life Updates

  1. Hannah

    I have been and will continue to pray for you and your family. Love and hugs!

  2. I was checking to see if my review was up yet when I found your news. I’ll be praying for you. May God wrap your whole family in His everlasting love and faithfulness. The review can wait. Concentrate on Jesus and let Him calm the storm. Hugs and blessings.

  3. Pam K

    I’m so sorry you and your family are having to go through all this but thankful you have the Lord to help you. I know He will help you through all this and am praying for you.

  4. Patty

    Praying for you and each of your family members… difficult times for sure.

  5. Kay Garrett

    Seems like when it rains it pours, but we can take comfort in knowing that God walks with us through our rough times. Letting us know allows us to lift you up in prayer and there’s nothing as powerful as a prayer and by many makes it multiplied uplifting.

    Saying not to worry is like saying not to breath for me. So I will just say at the end of each day turn it over to God and know that his will be done.

    Praying for your whole family that health may be restored, wisdom be given to the doctor’s to lead them in the right direction quickly and that you may see the rainbow at the end of the thunderstorm very soon.

    God bless!
    2clowns at arkansas dot net

  6. Terry Cooke

    Today is my first time I’m seeing your blog. It is up on my computer and I have no idea how I got here but I’m here. LOL Your story is quite similar to mine so I thought I would give a few suggestions since there isn’t much direction for you or your daughter at this time. If what I share strikes a chord and is helpful great. If not, thanks for indulging me. I hope it brings help and relief.

    The stress of surgery on the body and the use of anesthesia puts a lot of stress on the body. It can trigger the autonomic nervous system to go into overdrive and causing some pretty weird issues. What you are describing is symptoms of Dysautonomia. Dysautonomia is a dysfunction of the Autonomic Nervous System (ANS). This dysfunction can cause POTS, HyperPOTS or other forms of Dysautonomia. POTS is Postural Orthostatic Tachycardia Syndrome. Usually the body compensates for position changes without you even noticing it since the ANS automatically does it. The HR and BP are regulated and will compensate with position changes. When you have POTS the body is having problems compensating normally and you then get symptoms. Sometimes very weird and scary symptoms. There are variations that can happen with POTS but the basic indicators of POTS are a higher heart rate (HR) than normal when resting (my child’s was 150 while sleeping) and with position changes the HR usually skyrockets while the BP plummets causing you to be dizzy, faint and sometimes pass out. With HyperPOTS the HR is usually higher than normal when resting and with position change HR and BP can skyrocket making you feel like your heart is going to pound out of your chest, anxiety or panic hits like a ton of bricks, you swear you must be having a heart attack and you may die at any moment. You can dizzy, with your vision going dark and you see stars as you thing you are going to pass out (and sometimes you do). This time you just feel like crap so you sit down to catch your breath and to calm down hoping your HR will go down, the dizziness stops and you get your vision back. As you sit for those few minutes your HR is coming down and you are felling better so thank God it isn’t a heart attack… this time. You then think, is it safe to even get back up again?!

    No one knows what the heck this is or why this is happening and the fear is as palpable as your heart pounding out of your chest with this making you feel like you might die at any moment. That’s because the majority of Drs have no clue what POTS or the other forms of Dysautonomia are and even most cardiologists don’t either as you are now well aware of. You don’t need any fancy tests or medical providers to figure out if this could be the problem. This is called the Poor Man’s Tilt Table Test (PM TTT). All you need is an automatic BP/HR cuff, your bed, a timer and either something to write down the info or just use your phone. I’m sure you have a bed and pretty sure you now have one of those handy dandy automatic BP cuffs (if not get one), something to log the info, a timer and you are good to go. For the medical community they are now using a real Tilt Table Test (TTT) to study this and other autonomic issues. That is not necessary (regardless of what you are told) and it can actually cause more issues than help. Healthy people without Dysautonomia (specifically POTS) can actually have issues show up on the TTT and have issues after it so it’s hit or miss making it not that reliable (IMHO). IMHO a TTT is more for research and curiosity than anything but there continues to be advancements in that area so who knows it may be more reliable in the future. I’ve been dealing with Dysautonomia with POTS or Hyper POTS and other forms in myself and my children for the past 15 years. I’m incredibly thankful for the advancements but there still is a very long way to go as you can tell since you’ve been doing this for months yourself and your daughter is having issues as well without answers. Thankfully there is a lot more now than when I was trying to figure this all out and I’m so thankful POTS and autonomic disorders are finally becoming better known, better diagnosed and more help for patients.

    Here’s the directions for the PM TTT.
    You will need a bed, automatic BP/HR cuff and something to log the results. I usually take photos on my phone so everything is date/time stamped for me so less work for me. 😉 Having someone else help you is great but you can do it yourself as well.

    Lay down flat on your bed (no pillow) with the BP/HR cuff on. Lay there for at least 15 min. 20-30 is better the first time couple of times so things can calm down to get a better reading but also so you can be aware of your body and what its doing. Try to not move your body or your head so everything relaxes.

    Once the timer goes off after 15 min (or 20-30 min) make sure you are not moving around a whole lot, keep your head still and push the button to take your BP/HR. This will give you the baseline for your body being at rest. After taking your BP/HR then sit up. Try not to move around a whole lot, especially your head and wait 3 min. Different Drs will do 5 min intervals when they suspect HyperPOTS. I can explain that later.

    Once the timer goes off after 3 min don’t move around a whole lot, keep your head still and take your BP/HR. After taking your BP/HR then stand up. Again, move as little as you can keeping your head straight and as still as possible. Wait 3 min then take your BP/HR. This is where Drs will usually stop for the PM TTT but I have one Cardio who has me sit down and then will take my BP/HR at 5 min intervals because sometimes POTS patients their BP goes down and their HR will go up at first but then their BP will start to rise as the HR is still elevated or it may go down a little which can show a combination of POTS and HyperPOTS.

    The medical community are still trying to figure things out so there will be differences in what I do, what my Drs do and what other Drs do. This is what my Drs have told me and what they do.

    When laying down you have your baseline for your resting BP/HR. You then change positions by sitting up and you move your head so your body needs time to adjust back to normal. If there’s an issue with your body adjusting it will show up in your BP/HR. There are different combinations that can happen – high HR low BP, high HR high BP and low HR high BP and these combinations can also change at any time depending on how tired, sick, anxious, dehydrated, etc you are, what time of day you are doing it and what you were doing before taking your BP/HR. It can change several times throughout the day so it may be worse in the morning and get better throughout the day or be worse mid day when you are tired, etc. There’s a lot of different variables and that’s part of why POTS or other forms of Dysautonomia go undetected or aren’t properly recognized as these variable can happen with so many different things that this seems missed or the last thing and last resort to consider. Since it is so easy to do I have no idea why this isn’t the first thing to check and recheck.

    I have explained a lot so here is a recap of the PM TTT:

    Lay down flat (no pillow), place the BP/HR cuff on and rest for 15 min (20-30 min is better). Take BP/HR.
    Sit up and keep head still. Wait 3 min. Take BP/HR.
    Stand up and keep head still. Wait 3 min. Take BP/HR.
    Additional you can add.
    Sit down and keep head still. Wait 5 min. Take BP/HR.
    Stay sitting down and keep head still. Wait 5 min. Take BP/HR.
    Stay sitting down and keep head still. Wait 5 min. Take BP/HR.
    Stay sitting down and keep head still. Wait 5 min. Take BP/HR.

    The results of the BP/HR will show what your body is doing to compensate for you changing positions. From laying down to standing if the HR if the difference in HR has gone up 29 or more points, you most likely have POTS. My HR from laying to standing can have a difference of 50-60 at times so that is normally abnormal but having POTS, that’s not that abnormal and if you are dehydrated the difference can be greater.

    On a piece of paper make 6 columns. Label the columns date, time, BP, HR, activity and symptoms.
    You will then have 7 Rows. Flat, Sit, Stand, Sit 1, Sit 2, Sit 3 and Sit 4.
    You can then fill in the results of your BP/HR and log symptoms you noticed after each change in position. The bigger the differences the more symptoms you will have and the more exhausted you will feel since your body is working overtime to do normal compensation when changing positions.

    So here you have a game plan and something relatively easy for you to do yourself so you can get an idea of how your body is responding to a change in positions and how it is compensating. You can do this for several days before you get out of bed, when you are having more symptoms and at night before going to bed. You might be able to see a pattern emerging which can be useful in identifying what time of day or what activities cause more symptoms or when you are less symptomatic. This is very useful info for your Dr but most helpful for the Cardiologist or Electrophysiologist who is knowledgeable about POTS and other forms of Dysautonomia. You most likely will be hearing more of Dysautonomia or POTS in the coming months and years because these have developed and are lingering symptoms from the virus. This will allot more money to be allocated for Dysautonomia and POTS research so more information and help will be coming soon.

    Most likely you have had these issues off and on over the years. Craving salt is an indicator and its your bodies way of self medicating so to speak. Most likely going down on your salt intake has made the symptoms worse and more pronounced. With it being summer right now not having enough hydration intake causing dehydration can also increase symptoms. The first thing recommended is to increase salt and water (or electrolyte drinks) intake. If symptoms continue then specific heart meds can be added. The med you were given I would guess may not be one that is used for POTS. If POTS, HyperPOTS or another form of Dysautonomia is what is causing the symptoms you have, finding a knowledgeable Dr who knows what they are doing is key to getting you and hopefully your daughter to feel better and lessen symptoms. You would work with your Dr to find out what combinations are best for you.

    There are many things that can cause Dysautonomia so figuring out the underlying cause is helpful. Part of the reason for my Dysautonomia is a connective tissue disorder Ehlers-Danlos Syndrome (EDS). There is a spectrum of different types of EDS. The more common and most notable symptoms are soft velvety skin, thin skin, stretchy skin, abnormal scarring, taking longer to heal, easy bruising, flat arches and hypermobility of joints. My children’s fingers would bend backwards making it hard to hold a pen/pencil and their hands would cramp and fatigue easily. Flat or flatter than normal arches are common and can cause the feet to hurt and fatigue easily. Sprained ankles and tendonitis are also common. Being clumsy, uncoordinated and tripping a lot on nothing is quite common especially in children. A dilated ascending aorta and Mitral Valve Prolapse are common heart issues that need to be consistently monitored. There is a spectrum from not really noticeable to disabling and presents differently from person to person even within the same family. EDS is the most common connective tissue disorder so I thought I would bring it up.

    I hope this is helpful for you and your daughter. I’m more than happy to chat with you more so feel free to email me and I will get back to you. There’s a lot of junk info out there so here are some links for good info and a good place to start. I hope you and your family start feeling better soon!

    http://www.dysautonomiainternational.org/page.php?ID=34

    http://www.dysautonomiainternational.org/page.php?ID=30

    http://www.dysautonomiainternational.org/page.php?ID=35

    http://www.dysautonomiainternational.org/page.php?ID=150

    http://www.dynainc.org/

    http://www.dynainc.org/living/new-patients

    http://www.dynainc.org/living/new-patients

    https://rarediseases.org/rare-diseases/ehlers-danlos-syndrome/

    https://www.ehlers-danlos.com/eds-types/

  7. Ellie

    I am so sorry to hear of everything that has happened to you. I will pray for you and your family. I hope for much brighter days ahead for you!