Living with an invisible condition

It is hard for anyone living with a disability or illness and I am not writing this to say that my situation is any worse or better than anyone else's.  What I want to talk about so that others know that they are not alone is how hard it is to have an "invisible" illness.  I've talked a little before about the symptoms but I want to discuss just a little how they impact my everyday life and why its hard because they are invisible on the outside. 

I think people tend to have more understanding when you have a visible disability or illness but when it isn't anything that they can see, it isn't that serious.  It reminds me everyday that you never know what is going on with someone.  They may be sick or having a bad day but we shouldn't judge them because they aren't living up to your expectations.

One symptom I deal with on a daily basis is tiredness and fatigue.  Heart.org describes it as, "...a tired feeling all the time and difficulty with everyday activities, such as shopping, climbing stairs, carrying groceries or walking."  As a result, "the heart can't pump enough blood to meet the needs of body tissues. The body diverts blood away from less vital organs, particularly muscles in the limbs, and sends it to the heart and brain." 

I am exhausted after simple things that everyone takes for granted like grocery shopping, after cooking, after playing with Lovebug, and after cleaning for a few minutes.  Looking at me, there is no outward reason for me to be so tired and I sometimes I feel like no one understands.  But then I realize that most of that judging comes from me.  I judge myself for not being able to "keep up".  I am not sure what people outside of my household think and it really isn't important, but I know that at home I am supported.  Honestly, I think that I need to learn how to give myself a break and I know that there are thousands of women out there going through the same thing.  We need to learn that we may not be able to juggle everything and that's okay.

One recent example was a client meeting.  The team that I am on decided to walk to a client's office for a meeting and then back again.  I knew that I should have met them over there and drove my car but I also knew that I could make it so I walked.  Well there is a big difference between could and should.  I tried hard not to fall behind but I did.  I had to catch my breathe and tried to keep it from being too obvious. On the way back to the office, I couldn't keep up but I did my best to put on a happy face and make it back to the office.  Once there, we decided to go to lunch.  This time not as far away but still a nice walk from the office and then back again.  I was pretty miserable the rest of the day and even more, I was angry at myself.

I was angry because I should have done what was best for me and not be concerned with being a part of the team or outward appearances.  If I feel like I should drive someplace, then that's would I should do and not be concerned with what others might think.  I was angry that I never give myself a break and I am so hard on me.

This post was written in 2/2018 and taken down because I didn't want anyone to feel sorry for me or to think that I wanted sympathy.  I will work on an update soon.  Thanks for reading.

Part II: Electrolytes - Magnesium

Magnesium has been my favorite electrolyte so far.  I know it sounds weird but magnesium seems to me like where my/our focus should be.  Yes, keeping sodium levels and potassium levels in check are important but raising magnesium levels sounds like the best way to improve your health.  My cardiologist commented that my rhythm may be related to an imbalance of electrolytes but he looked up my most recent labs and everything seemed to be normal.

When I researched the symptoms of magnesium deficiency, it seemed very familiar.  Symptoms of having low magnesium are abnormal heart rhythms, difficulty sleeping, loss of appetite, nausea, fatigue, weakness, numbness, muscle cramps, low blood pressure, restless leg syndrome, anxiety and hyperventilation.   Since I have been suffering with an irregular heart beat, trouble sleeping, extreme fatigue and anxiety, I though it would be beneficial to focus on my magnesium levels.

I dug a little further into magnesium deficiencies and read online that although blood tests may show normal levels, you can still have low levels of magnesium.  Apparently, only a small percentage of magnesium levels are in the blood, and the normal blood tests won't actually measure the levels in the rest of the body.  I am not sure how accurate this is but I wanted to give magnesium supplements a try.

So how much magnesium do adults need? Women need about 310-320 mg and men need 400-420 mg per day. Like potassium, high levels of magnesium can be dangerous, so the best place to get the correct amount of magnesium is through diet.  If someone decides to take supplements, its recommended that they take no more than 350mg in supplements per day.

Magnesium rich foods include:

Pumpkin Seeds
Sunflower Seeds
Cashews
Cocoa Bean
Wild Rice
Almonds
Brown Rice

Avocado

I'll post my favorite magnesium products in the next post.

Part I: Electrolytes - Potassium

My latest health scare was an irregular heart beat.  My cardiologist seems unsure of the cause.  He said that it can be an electrolyte imbalance, lack of sleep, stress or other causes.  In response, he prescribed a higher dose of metroprolol and scheduled my next appointment two months away.  He mentioned that my labs were normal in November/December of last year but didn't order new labs.


This was a very frustrating appointment because I don't feel like I left knowing much more than I did going in (more on this later). I will admit that while I was there, I didn't ask the greatest questions because I didn't feel great, I was upset and had a hard time focusing.  When I got home, I tried to do research but there are so many different irregular heart beats that I didn't know where to start.


Most of the possible causes are things that I can change or at least try to change.  I started to research the causes of an electrolyte imbalance. An electrolyte imbalance is when there isn't the right amount of certain nutrients in the blood such as, calcium, potassium, phosphate, magnesium and bicarbonate. I've already spent some time talking about sodium and I highly doubt I am lacking sodium because even though we rarely cook with salt at home, I still eat out and most of those meals are high in sodium.



I  take a prescribed potassium supplement and sometimes, but not often, use salt substitutes that are high in potassium.  I doubt my issue is a lack of potassium but since my medication strips potassium, its a possibility.  I want to spend some time going through what I learned about potassium.  First of all potassium is vital for the function of the heart, kidneys and other organs.  It is important to eat foods that contain potassium, especially for those of us with heart issues because potassium can lower your risk of high blood pressure, kidney stones, stroke and remove excess sodium.  High potassium is very dangerous, therefore, it is best to get potassium from foods and not from supplements (unless prescribed).  An adult should consume 4,700 mg of potassium a day.



I don't know about you but 4,700mg seems like it may be difficult to reach each day so I've made a list of potassium rich foods that can help get you there.



Sweet potatoes - almost 700 mg in one
Tomato paste - 660 mg in 1/4 of a cup
Tomato sauce - 550 m in 1/2 of a cup
White beans - 600 mg
Plain nonfat yogurt - 580 mg
Carrot juice - 500 mg
Tuna - 500 mg
Edamame - 500 mg
Banana- 400 mg
Milk - 380 in a cup
French Fries - 677 mg



Alright you might be thinking what I'm thinking.  Do I have to eat these potassium rich foods everyday to reach the recommended daily amount of 4,700 mg or can I eat what I normally eat with 2-3 adjustments that focus on potassium? Well lets see.  Here is a daily meal plan with only 2-3 items focused on getting additional potassium (noted with **).



Breakfast
Toast 47 mg
1 grapefruit 166 mg
Orange juice 496 mg**



Lunch
Romaine lettuce 240 mg (2 cups)
Grilled chicken 220 mg
4 grape tomatoes 160 mg
1/2 avocado 485 mg
Ranch dressing 40 mg
Shredded cheese 28 mg
White beans (soup or chili) 600 mg**



Dinner
Spaghetti and meatballs 510 mg
Garlic bread 45 mg
Side salad (half of above without chicken) 475 mg



Snacks
yogurt 290 mg**
almonds 208 mg



The total comes to 4,010 milligrams which is a little lower than the goal but not too far away.  Some small adjustments and we can easily get an additional 700 mg.  Maybe add a banana, tomato juice, spinach, oranges or some combination.

Supplement Time - Coenzyme Q10

After diagnosis, I decided it was important for me to research "alternative" treatments for heart failure.  There are many different vitamins/supplements that pop up when searching online.  Even though I shouldn't have to say this, I am going to add a quick disclaimer.  I am not a medical doctor and this information is not intended to be medical advice.  If you are interested in any supplement shown here, consult your doctor before taking.  Also, supplements should be taken in addition to prescription medications and in no way replace those medications.

One of those is Coenzyme Q10 (Co Q10).  Some people have reported that taking this supplement did not help them at all, others have had improvement in their EF, while others report a surge in energy when taking them.  One symptom or effect of heart failure is fatigue and lack of energy which I definitely experience.

There are many articles online that talk about the benefits of Co Q10 especially for those interested in maintaining heart health.  Not many of those articles recommend a brand or even which formulation is best.  Initially, I didn't realize that there were multiple options.  I started by taking a Co Q10 product that I purchased from Walgreens.  I believe it was the Walgreens brand.  Some of these can be expensive so I bought them when they were on sale.  I took these for over two months and I didn't notice any difference so I decided to do a little more research. 

This is when I read that Co Q10 as Ubiquinol is better for heart failure.  I read reviews on Amazon and compared prices based on milligrams and decided to buy the Jarrow Formulas brand.   I took for several months and I was starting to feel better.  My EF improved and I had more energy.  As with all vitamins/supplements, I stopped taking them.  Recently, I have been having complications and I have been feeling tired.  I decided to start taking these again as supplements in addition to the prescription medicines that I have.



If you are interested in trying Co Q 10, please click here.  Let me know your experiences with Co Q10 by leaving a comment or sending a message.

Wow 9 months

I realized recently that it has been 9 months since my last post.  I've written a couple posts over the last few months but none of them are ready in my mind for posting.  I am not sure what they are missing or what it is that keeps me from posting.  I think the reason is that I wrote my first posts when I was learning about PPCM and I thought it was important to share so that others know about this disease because I had never heard of it. 

I wanted to continue to write so that there is one more resource for those that are recently diagnosed to read and know that they aren't alone.  This sounds good but in reality, that means that I have to write about me and that isn't always comfortable.  There have been plenty of times where I write and then decide that no one is interested in that topic or I don't want to come across as complaining when there are people worse off.

Like a few months ago, I started writing about my parking garage at work.  We were blessed not to have any damage to our home from Hurricane Harvey.  However, the parking garage near my job, which is underground, flooded.  I waited about two years for a contract at this garage.  While I waited I paid $15 for daily parking, I took the public bus to downtown or I bummed a ride with Sean.  Finally, in March of 2017, when I returned to work, I got a parking contract.

Fast forward to fall of 2017 and I could no longer park in the garage because it flooded during Harvey.  The garage found parking for those with contracts in other garages, and provides a shuttle to bring us closer to work.  Unfortunately, the shuttle stop was about 2-3 blocks away from the office.  For any other normal person, this is a small inconvenience and ordinarily I wouldn't complain when there are people who lost everything.  But then I decided that this blog is my space and this is about living with PPCM and the truth is that the situation SUCKS.

I parked 8 blocks away.  I would get on the shuttle (with an oversized laptop bag). Ride to a shuttle stop 2-3 blocks away from where I used to park.  Walk to work. Some mornings by the time I arrived at my desk I was out of breathe and needed some time to regroup.  Other mornings, I felt fine.  Then I would work all day and do it all in the reverse to get home.  Once at home, you feel like you can't do anything else, but your day isn't over.  Dinner needs to be prepared and the kid(s) want all of your attention.  The really terrible days are the ones when you really can't do anything else.  The days when I hear "up" from love bug and picking her up feels like lifting a ton of bricks.  Or the days when I am so exhausted I feel like I can't even carry her up the stairs. 
Like I said before, when I typed it, I decided no one wants to hear your whining but this isn't being written for just anyone. Its for a mother with PPCM that finds it difficult to do daily tasks and maybe that one little inconvenience just sets her back a little more than she felt like she was the day before.  Some days "regular" activities feel like too much and the purpose of this blog is to let someone else with PPCM know they aren't alone.  Yes, we get winded after walking a mile on some days and after a block on others.  Yes, we need breaks when other people don't.  Yes, we can't do the things we are used to doing and often times we don't want to or can't admit it.  Just know that although everything becomes harder but we still keep moving forward, even if its not at the same pace we are use to.

Implantable Cardioverter-Defibrillator

Implantable Cardioverter-Defibrillator

On April 5th, I traded in my lifevest for an ICD.  If you had asked me on that day, I would have told you that was the worse experience of my life.  Today, as I look back on it, I am not so sure that's how I would describe it, but it was definitely the most painful.  As it was explained to me prior to the surgery, I would be sedated but still awake.  I was aware of what was going on around me the entire surgery until they tested the device when they finally put me to sleep.  I felt every movement and felt as though I was being tortured.  I had read the account of others describing their experience and most say exactly what the doctor told me prior to the surgery that they were awake but relaxed.  However, after the surgery I was somewhat traumatized and very unhappy.

As a side note, I was told in advance that they would put me to sleep to test the device.  I wasn't explained exactly what testing is but I've read that they speed up your heart and the device shocks it back into a normal rhythm.  The shock has been described to me as a kick in the chest by a horse which is why they put you to sleep for this part.  It is a little scary wondering if the day will come that I experience this but I remind myself that it is better than the alternative. 

I spent a few hours in recovery.  I had to ask and then wait at least an hour for pain medicine.  It was as if being in pain after you had been poked, cut and prodded without much sedative was unheard of in the hospital.  This continued even after I was moved to a hospital room.  I had to constantly ask for pain medicine and wait, sometimes hours, for a response.  After my bedrest ended, I was able to move around which hurt even more.  My list of "rules" for recovery were constantly evolving.  I was always told not to raise my arm above my shoulder.  Now, I was warned not to put it behind my back.  Next, I was told I could resume most activities after a few days, but I was not told that driving was not one of them.  I was advised not to drive for two weeks.  I was reminded not to pick up more than 5-10lbs and I was given instructions on how to care for the incision.

I was discharged the next morning.  The incision and the area around it was swollen and very sensitive.  The incision was covered with purple surgical glue.  I needed to take pain medicine for a few days after being discharged and the pain eventually lessened to more of an ache.  My follow up appointment was two weeks later.  I drove myself (this was my first time driving) to the doctor's office because remember, I was told that I could drive after two weeks.  When I arrived, we discussed how things were going, I was reminded of what I couldn't do like drive for four weeks.  I notified the nurse that I was told two weeks in the hospital and I drove myself to their office.  She said, "Well you can drive but not more than 10 miles and don't use your left arm."  The evolving guidelines are my favorite. 

Next they checked the ICD to make sure it was still working properly and that the lead was still attached.  I am not sure if I explained this before, but the lead comes from the device and is attached to the heart. All of the restrictions to movement is to keep the lead in place until scar tissue forms around the lead and it holds it in place.  I was glad to hear that my ICD was still working properly.  It is very difficult with a 6 month old to adhere to all of their rules.   Its not like Lovebug knows what she is doing when she places her head or swings her arm and hits me directly on my chest near the ICD.

I want to summarize a few points from my experience for those who are needing to have their own ICD implanted in the future.  First, you should ask for a printed list of restrictions prior to the surgery.  This will give you the ability to plan your schedule appropriately and you will know how much help you will need when you return home.  Also, the last thing you want is to have to have the lead replaced which would result in having another procedure as well as starting the recovery time over again.  Second, I would suggest talking to your doctor about being sedated.  What will they do during the surgery if you are in pain?  Ask what is normal and what is not so that if the pain becomes intolerable, there is a plan of action.  I think that the drugs didn't work for me and I should have insisted that something be done. However, when you are in the moment it is not as easy to be an advocate for yourself as it is beforehand.  So those are my lessons learned and hopefully that will keep others from having the same experience. 

5

Five.  The number of percentage points my EF increased.  On March 15th, I was scheduled for a follow up echo to see what my ejection fraction was after being treated for PPCM for 3 months.  At my doctors visit prior to this one, we talked about an ICD and how I would need one if my EF was less than 35.  Well the doctor estimated that it was only 25-30 (later they changed it to 20-25) so I would need an ICD.  I don't know what I expected.  I guess I was hoping that it would be 30.  After my episode of ventricular tachycardia, I figured it my EF was still low but I hoped that because my medicine was increased, maybe it had continued to improve.

Needless to say, I was pretty disappointed.  I didn't want to write this blog anymore because I wanted to be able to share good news.  Instead my update is that now I needed an ICD.  I won't dwell on my disappointment.  Instead, I will tell you about how I traded in my lifevest for an ICD. 

My cardiologist referred me to an electrophysiologist who would implant the ICD.  He was very knowledgeable and I felt comfortable moving forward with the surgery (not like I had much of a choice).  The ICD is an implantable cardioverter defibrillator which is useful in preventing sudden death in patients.  The ICD can pace the heart if the heart rate is detected to be too slow and it can shock the heart when the heartbeat is too fast or chaotic.  The ICD is not a treatment for PPCM.  It's meant to protect against sudden death which can be a result of PPCM.

Being able to get an ICD is a blessing because I no longer need the lifevest.  The lifevest made me feel safe but it was a constant reminder that there is something wrong with my heart.  Even when I was sitting down with no symptoms, I still had to deal with the lifevest poking my side.  I hope that the ICD will not be a constant reminder like the lifevest but I know that it's not something that I get and forget about.  The ICD comes with its own set of challenges.  I have to be aware of my surroundings because not every environment is safe for ICD patients. 

I was told what to expect during the implantation surgery (procedure) as the doctor called it but I will explain why it is definitely surgery and not a procedure.  I would be sedated but awake.  They will create a pocket for the ICD in my chest and run a lead to my heart.  I would need to stay in the hospital overnight, I shouldn't drive for 2 weeks, I can't raise my arm above my shoulder, I can’t put my arm behind my back and I can't pick up more than 5-10lbs (Lovebug is about 20lbs).