CHD AWARENESS MONTH ~ About T.J. – #myCHDHeartWarrior

In honor of Congenital Heart Defect Awareness Month in February, I am accepting Heart Warrior/Hero stories. Please email me at eandowriter@gmail.com with your story. I will feature a different Heart Warrior each day of February. If I receive more than 28 entries, I may feature two stories a day, or I will continue posting daily until all have been posted. Tell me about a Heart Warrior in your life! (Limited to Congenital Heart Defects for CHD Awareness).  You may include up to 3 photos. There is no limit on length accepted, because everyone’s story is different, but please try to limit to under 3000 words, if possible.

Share pictures with me on Instagram or Twitter! #myCHDheartwarrior

Below is my Heart Warrior story:

Hello. My heart warrior, T.J. (now 4 years old) is my miracle.

I suffer from Polycystic Ovarian Syndrome, which can make it very difficult to conceive. My husband and I tried for over a year using Metformin in the hopes it would increase ovulation and improve our chances. When it wasn’t working, the doctor ordered an HSG test (Hysterosalpingogram) to make sure that my tubes were not blocked. The test was normal, so I took Provera to initiate a cycle, and then Clomid to increase chance of  ovulation. A few weeks later, I found out I was pregnant. After the anatomy scan, I remember being concerned because they wanted me to come in again for another scan. But after the second scan, the doctor said everything looked fine, so I released it from my mind.

T.J.’s birth was a bit rough. He wasn’t ready to come out, but at 38 weeks, the doctor ‘accidentally’ stripped my water, and my water broke that night. The labor was long, and in the end required 3.5 hours of labor, a vacuum, and cuts to make it easier for him to come out. We were dangerously close to an emergency C-section, but he came out crying and a little jaundice. Other than the minor jaundice, the doctors said he was perfect. Over the next week, I had to bring him in 3 times to check his bilirubin levels, but they eventually improved. Everything was well.

At 6 months old, his primary care doctor mentioned to me that he had a murmur, but she said that it is usually nothing to worry about and didn’t say anything more. I was a little concerned, but she assured me that it was not uncommon and probably fine. T.J. was constantly getting sick. Ear infections (got tubes in at 1yr), colds, fevers, etc., so he was at the doctor’s office a lot before the age of 1.

Around year old, T.J.’s growing started to slow down. By 15 months, he was in the single digits on the growth chart for both height and weight, but the doctor said he was proportionate and likely just going to be small. I had a hard time with this thought, because my husband is 6’1 and I am 5’7. My husband was born over 9 lbs. and I was over 8. We both grew up chunky. At each appointment I would ask about his lack of weight gain or growth. Sometimes he even lost weight since the previous appointment. “Give him Pediasure” is about all I got.

At about 16 months, he started going to a different doctor, because I had baby #2 and I wanted them to have the same doctor (the military base wasn’t allowing babies to be seen off base when baby 2 was born). At his 18 month check-up, his new doctor was very thorough and we went over all of the sicknesses and issues I remembered the first doctor talking about. I mentioned the murmur, and the doctor listened very closely to T.J.’s heart. By this time, T.J. knew oh so well the routine of visiting the doctor and was good at sitting still and waiting. She said she did hear a murmur, but she also thought it was probably nothing. She said, “most murmurs in small children go away by 4 or 5.” Okay. She did take an interest in his height/weight charts. He was getting noticeably lower on the charts as he grew. She gave us a lot of advice on what to feed him, and had us return every month or so to check his growth. Each time, the same routine, including checking for the murmur, but doing nothing.

When Trent 2 years old, I was diagnosed with a genetic condition, Ehlers-Danlos, which can have some cardiac issues and calls for an echocardiogram upon diagnosis. Because it was genetic, and I knew something was going on with T.J., I asked to have him evaluated for the disorder as well. It was still a little early; they don’t generally evaluate kids under 4 or 5 because of the natural flexibility (one of the signs) of children. The geneticist diagnosed him very easily. She said that even with his ‘baby flexibiliy’, he was far more flexible than normal, and he had many of the other systemic signs. With the diagnosis, his doctor listened closely and for a long time to his heart, and admitted the murmur was very quiet, but still there. That coupled with the EDS diagnosis was concerning, and he was scheduled for a baseline echocardiogram right away. For EDS’rs, echocardiograms are done regularly (often annually) to check for any aortic dilation, and the first is to provide a starting point to look for changes at later checks.

I still remember just about everything about that echocardiogram. T.J. was 2.5 years old. We lived in a small town. The only pediatric cardiologist in town was actually from 4 hours away, and only came to the office a couple of days a week. He was very young. Very new. The Echocardiogram tech was a young woman, she seemed very smart and confident in her work. There was a young new doctor in the office for training as well. I’m not sure where he was in his schooling, perhaps a resident interested in cardiology, but he also seemed smart and pleasant. I think that he may have been sitting in on the echo because of T.J.’s diagnosis of Ehlers-Danlos. It is a fairly rare (1 in 5,000 or 1 in 10,000, depending on the source), our doctors’ appointments tend to have a lot of trainees/new doctors/interns/etc. in them. Regardless, both of them made T.J. and I more comfortable in the office. T.J. did amazingly during the echo. He watched Mickey Mouse and ate animal crackers that the tech gave him. He didn’t whine once. During the echo, I was comfortable. It was just to get a baseline after all. It wasn’t intended to find a diagnosis. It was intended to prepare for future check-ups.

About half-way through the echo, I noticed it seemed to be taking a bit longer than I expected, and the tech seemed to be looking at the same pictures over and over. The trainee doctor started getting very interested. More than I thought normal based on the one I got a few months prior. Then he said to the female tech, “Is that…?” She responded, “Yes, ASD.” Of course, at that time, I had no idea what that meant. I started to get really nervous though. I had already had my echo, and it was normal and nothing like this. After what seemed like an hour (though it may not have been quite that long, I really don’t remember), the tech said, “okay, we are done. I’m just going to go check with the doctor and make sure we have all the pictures we need.” I’ve heard them say that before. Okay.

It wasn’t until the doctor came in with “the face” that my heart began to race. He sat down and started, “T.J. has what is called an Atrial Septal Defect. It is a congenital defect that likely occurred during development in the womb. Essentially, there is a 17mm hole in the wall between the left and right atrial chambers.” He drew a rough picture that indicated a hole and explained the concern with the oxygenated blood flow. The oxygenated blood was mixing with the non-oxygenated blood, creating a lot of pressure in the right side of the heart. The right side of the heart was nearly twice the normal size, and the whole was very large, large enough that it would not close up on its own like many ASDs found in young children. He stated, “since he isn’t symptomatic, I recommend waiting until he is 4 or 5, so that he can have the laparoscopic surgery to patch the hole. Right now, his veins were likely too small, but if we wait a couple of years, he can have the procedure. It has a 95% success rate and a shorter recovery time.” My immediate response was, “He’s not symptomatic? He is considered failure to thrive, below 0% for height and weight on the growth charts. He is sick constantly, enough that they thought he had asthma. You think we should wait 2-3 years?”

His response angers me to this day. “Well, it is a very large hole…[he paused for about 4 seconds here]…, but he should be fine. Most kids wait until 4-5, and laparoscopic is better than open heart surgery, which would be quite risky right now. We will schedule you to come back in a year for another echo…[pause] well, the hole is large… [pause], why don’t we schedule it in 6 months?”

I hated not knowing anything about his ASD diagnosis at the time. I wish I did, because I would have argued and argued with him until he did something more. Instead, I called my case manager. Luckily, I was working at the military base clinic at the time, and I spoke with the Chief of Medical Staff every day. I spoke with her about it, and she was outraged. She wasn’t a cardiologist, but she was a doctor, and she knew he didn’t do everything he could. She called the case manager, and within 24 hours, she had a call into the #1 Pediatric Cardiologists of the state. He specialized in Congenital Heart Defects and had over 25 years of experience with CHDs. (TIP: LEARN MORE ABOUT ANY AND ALL DX’S YOU GET! MOST DOCTORS DON’T TELL YOU EVERYTHING YOU NEED TO KNOW. BE YOUR OWN ADVOCATE.)

T.J. was accepted as a patient, and we went to see him within a couple weeks. He told me that he looked over T.J.’s chart, and reviewed the echo. The satellite office in my hometown was from this doctor’s hospital system, and he had access to all of the notes and tests. The first thing he said was “I’m sorry. I’m sorry that you were not treated as you should have been. We are addressing the situation, and I am glad you came to see me.” I breathed. Have you ever so relieved, that you realized you hadn’t been breathing fully? I could feel my chest loosen, and I took full breaths. Over the next 30 minutes, he showed me the scans, he explained how his heart was working so hard that it was wearing T.J. out. He explained that just to beat his heart, he was burning calories as if he was running marathons. His body stopped growing because it was busy keeping his heart beating. He told me, that if I had taken that doctor’s advice and waited even just a year, T.J.’s heart may have been beyond repair. Continued pressure in the right side could lead to the natural pressure in the heart reversing to the opposite side. This was not something that could be corrected, and it would put him in danger of serious heart problems for the rest of his life. This doctor is one of the people that saved my son’s life.

His new doctor also let us know that at his age open heart surgery would be the safest option. Because open heart surgery has been done for so long, it has a 99% success rate, compared to the 95% success rate of the laparoscopic surgery. Plus, it has been proven safe in the long term, while laparoscopic hadn’t been around as long, and may have more risks in later years. It was too new to know the risks past 10 years. So, T.J. was scheduled for open heart surgery. We took two weeks prior to the surgery off of work in order to make sure he was home from day care and didn’t get sick. I was still new in my job, and hadn’t had much leave available, but some amazing federal workers donated their leave to me, and I was able to take a total of 8 weeks off. A few days before his scheduled surgery, we got a call that it would have to be postponed due to some emergency procedures that needed done. So, we had to take another two weeks off to continue to keep him as healthy as possible before his surgery.

The day before the surgery we took the four-hour drive to where his surgery would take place. We stayed in a hotel, because we had to be at the hospital at 6:30 am for prep. He was supposed to be the first surgery of the day. Unfortunately, some children came in needing emergency services, so we stayed in the prep area until it would be his turn. Every couple of hours, they would bring T.J. some juice to hold him over, only if they knew it would be at least two hours. Seeing them come in with juice increased stress more and more. T.J. did so well. By the time of his surgery date, he was always tired. He played on his tablet, and he got to play in a plastic car toy in the hallway a few times. He was wonderful.

It was evening when the Chief of Surgery in Pediatric Cardiology came in and told us that if we wanted, we could come back the next day, but he had gathered a group of volunteers that were happy to stay late today to make sure that T.J. had a successful surgery. He said he would be the one to do the surgery, and everyone that stayed was happy to do so, eager and alert, and T.J. would be taken care of. Rather than making T.J. go another day without food, sitting in a hospital bed, and stressing all over again, nervous about the surgery, we decided to stay. He went in to surgery around 9:30 pm. His surgery was quick and uneventful, which is a good thing. He went into the ICU after surgery, for an obligatory stay before being moved to his room. He was in the ICU for about 12 hours; a very short period of time, because he was recovering so well.  When he woke up, he asked for chocolate milk, which he kept down. He was tired and groggy, but his color was returning quickly. He was already so pale before the surgery, but we didn’t realize how pale until he started getting his color back.

He spent 3 days in recovery. He did so well. Almost no complaining or whining. The nurses joked (though in an honest way), “Children are so much better recovery patients than adults; they are much more pleasant and complain much less.” When they removed his central line, he was like a whole new kid. He was alert and happy and hungry. It was an immediate change. Soon it was time to go home, and he did so great. My heart was full.

Not a week after, he was running all over the house again, which he hadn’t done much in months. It was amazing. His surgery was just before Christmas. We felt bad because we didn’t get much for Christmas, with everything going on. On Christmas Eve, my boss was at my front door. Mind you, I had only been working there for about 4 months. But my boss tells me he has a delivery for me and handed me a card. I opened it as we walked to his SUV. As I am reading, he opens the trunk. It was a Christmas card, signed by a lot of people from my squadron. I look up, and the trunk of his SUV was FULL of presents for BOTH of my kids. I was nearly in tears. I did cry hard later. A number of times. We brought in all of the presents and our living room was overwhelmed with gifts. I still tear up when I think about the most beautiful gifts we received that year: HEALTH, LOVE, AND KINDNESS.

T.J. has had two echocardiograms since his surgery and both have been normal and beautiful. He is growing, learning and active. He is my hero. He still talks about his ‘zipper’ and shows anyone who asks to see it. It will be his awesome scar story.

My heart hero: T.J.W ❤ ❤ ❤

Thank you to all of those that have supported us through a very difficult time. So many people stepped up to give their support, through donating their earned vacation time, getting presents for the kids, being a shoulder, being a friend, babysitting, just asking us how we were, and so much more. We love you.

I would love to hear your stories. Please email them to me ASAP at eandowriter@gmail.com to be featured on this blog in the month of February. From one Heart Mom to another Heart Parent, I know you are brave and strong and courageous. Help spread awareness to increase funding for research and improve treatment options for CHD sufferers.

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Fight Song

After my last post, I found this song, which I hadn’t yet heard. Yeah, I don’t listen to music much anymore, as I always have audio books on in my car.

But man. This song. First time I heard it, so many tears.

It was what I needed.

It is time to take back my life and move forward.

E&O

Tired.

I’m not sure if I can get any more tired.

Daily, I struggle with the pull of my own body’s failings.

How do I shake it off, when each time I think I can, something else is first added on, and then I have to start all over?

The drag of each next appointment. The lack of motivation to work. The slow removal of the ability to work. The diminished quality of my work.

How can I convince myself to continue with school and work, when I can barely keep my head over the “to do’s” continuously trying to drown me? I do I keep up my effort to stay above it? How can I keep up?

The pain is growing. Even just weeks ago, I considered my pain more of a “come and go” type of pain, with a very low level of continuous pain. It has changed. For weeks, the continuous pain has been steadily getting higher on the scale.

I know mine is still nothing compared to so many out there like me, but pain is personal, and mine is overwhelming me. It exhausts me. It makes it difficult to think, to talk, to open my eyes, to smile. I’m tired.

I’m not sure if I can get any more tired.

But then again…I have another appointment tomorrow.

 

Back to Work

I’m sorry it has been so long since I have posted on here. As I mentioned before, I have started working full time in addition to my three graduate level courses, so I’m very beat nearly every day. I have a couple of updates for today.

I saw a geneticist not long ago and learned even more updated information about EDS, and it really opened my eyes to how little EDS is actually what causes the most pain and problems. Much of the issues I have, like Sjogren’s, sleep apnea, herniated discs, psoriasis, terribly dry, itchy skin, hypertension and more are actually from pre-dispositions in genetics. Interestingly, none of these things are genetic, but they do tend to run in families, and having close family members with them tends to increase the risk of getting them. In our family, that risk increases ten-fold apparently. All of these conditions can be significant issues on their own. All of them can be attributed from my father and most of my sisters and I suffer from many or all of them. With autoimmune disorders, you may not get the same disorder as the family member, but you are more likely to get some autoimmune disorder if a family member has one. Sjogren’s and Psoriasis are autoimmune, and my father has Psoriasis and rheumatoid arthritis and I got Sjogren’s and another sister has rheumatoid arthritis. My father also has sleep apnea, heart disease, herniated discs and other issues. Another of my sisters has herniated discs as well, and most have some sleep problems. It’s funny to me that we have this rare genetic disorder, but it seems to be quite mild compared to the multitude of other issues we have.

With at least one exception.

My sister “J” seems to have the most problematic EDS symptoms of all of us. She gets recurring spinal fluid leaks and more pain and fatigue than any of us. She often must use a wheelchair/electric chair, and is at times bed-bound. With four boys 11 and under, this can be very difficult. It makes it hard for her to do basic things for herself and her family. Her husband is a firefighter and so can’t always be there to help. To get the leaks fixed, she has to go across country to a specialist in Los Angeles. There she can have several tests done and then surgery to close the leak. It is very expensive and even just getting there is very hard for them. They’ve made it work a few times now with help from donations and family. She is so strong, like most with chronic illnesses.

In other news, work is exhausting and I am barely keeping it together. It is so conflicting for me because I LOVE to be working, especially in a job like I am in now, where I am constantly learning so much about my field of interest. This job is just a ‘temp’ job but it has valuable things to teach me. There has been talk of a permanent position, but I feel like I’m being tossed around, unsure of where I’m going or if I will be dropped. It gets a little irritating not to know whether I will have a job in a month or not. However, at the same time I am so tired every day that I know it would probably be better for me physically to stop working again until I finish my graduate degree. The problem is that I love to work, and I really need the experience, because I have very little in my field, and jobs that my degree qualifies me for, also require several years of experience. So I am trying to figure out a middle ground.

Well, thanks for returning and catching up with me, please comment and visit my sister’s page if you can, even if just to say good luck or something.

Love all,

E&O

 

Preparing to Work

I used to work in logistics while active duty in the Air Force, which is likely part of the reason my body is so messed up these days. When I got out of the military I spent about a year home with my kids, then still very small, a newborn and a one year old. Just after my diagnosis with Ehlers-Danlos Syndrome, I got a job as a Secretary in the base medical clinic. Shortly after I started, I was finally able to get some of the initial tests and specialists appointments due to my EDS diagnosis. With each appointment, something new was found. By the time I left that job to move up here, my diagnosis list had grown exponentially. And it seems like they all include the phrase, “you’ll be dealing with this the rest of your life.” Gee. Thanks.

With Ehlers-Danlos, I also deal with Sjogren’s syndrome, dysautonomia, herniated discs, PCOS, Sleep Apnea, Neuropathy, high blood pressure, IBS, and more. Let’s just say, I see about 9 or 10 different specialists, with at least 5 of them on a regular basis.

Going back to work always brings with it certain challenges. I love to work. Being at home these last several months gets me fidgety. Not that I haven’t been busy, I have been studying for my master’s degree. I have so much to do with school, that work will probably incredibly stress me out. I just really like the feeling of working, learning and earning money.

This great opportunity came up for a temporary position where I can learn so much in relation to my degree, and I am excited to start on MONDAY. With extremely short notice, it is a little scary, but I’m just glad I dyed my hair back to a natural color a couple of weeks ago. So now, I need to prepare myself to be able to do everything. I need to prepare for the extra stress on my body, my mind, even less sleep than I get already, only being able to do school work late at night and weekends, and the drain of potentially dealing with dramatic and petty people.

Some of the things I am doing, is getting as far ahead in school as I can right now, and setting a to do list that allows me to check off every assignment, every reading, every lecture that I have to do. This app, Wundlerlist. is working perfectly for me and allows me to make lists of different types of tasks. I have started using it for other tasks I generally forget easily. Lists are extremely useful for someone with brain fog. Also, I am doing all the cleaning and laundry that I can manage until Sunday. Sunday I am going to relax as much as I can, maybe use that day to do as much homework as possible, because Monday is going to be a crazy new schedule.

What do you do to prepare for work or to help with the stress of working or for changes in schedules or activities?

Illness Army: Diagnosis of a Chronic Illness

This post was featured in the Illness Army Series by Cass at Indisposed and Undiagnosed. Please view her blog for some great posts from many suffering from chronic illnesses.

 

Diagnosis of a chronic illness.

At first, there is some relief. You think, finally I know what is going on. My questions are finally answered and someone actually listened. Now I can move on.

But sooner or later, depending on the person, realities of what the diagnosis means sinks in. For some, a little at a time, for others all at once. Sometimes triggered by events, sometimes by people, sometimes out of nowhere at all. Things will forever be different.

These times can be extremely distressing, exhausting, terrifying, depressing. But, the important thing to remember is you can still be happy. You can still do things, they may just be different things, or the same things but in different ways. With the right support, anything is possible.

Here is a list of 10 things you can probably still do:

  1. You can tell people you love them. You don’t have to be able to do everything for them. You don’t have to be the one to cook or to clean or to fix things around the house. You may not be able to show them love in ways that you used to. But, you can find new ways to show them. And even in the hardest of times, you can always just tell them that you love them.
  2. You can smile encouragingly at others that may be going through a hard time as well. If you see someone getting out of their vehicle, parked in the handicap spot, you can smile at them. Even if they don’t look sick, you know they could be going through so many things, and with all of the other rude people in the world, you can be the one to brighten their day.
  3. You can accept help and support. Others want to be helpful. You may not be the type of person to ask for help easily, but sometimes all people want to do is be able to be there for you, to be able to help in any way possible. Give them that chance every now and then. It will help both of you.
  4. You can follow doctors’ orders. This is a hard one sometimes, but it can make a big difference in your everyday health, pain levels and attitude to do the things the doctors suggest, whether that includes just taking your medications on time, doing exercises, eating healthy, keeping a positive attitude, or just making all appointments.
  5. You can kiss your family. Love them. Kiss them. Hug them. All the time. Don’t hesitate to give them love.
  6. You can laugh. Laughing can be healing. It can improve everyone’s attitudes. It can change your whole day for the better. Laugh whenever you can.
  7. You can live. You can live your life. If something is keeping you from doing something you want to do, find another way to do it. If walking through the store is too much, don’t be afraid to use the motorized carts. If you want to take your kids to the amusement park, plan ahead and do it. You may have to rent a wheelchair or cart, or bring a walker or cane, or take tons of breaks and drink tons of water, but you can do it if you really want to.
  8. You can help others. Even something small, like a dollar in the donation can at the store, or something big like heading a fundraising campaign all make a difference. Sometimes the simplest things can be a great help to someone else. Try doing something once a day that is purely to help someone else. Helping others brings joy.
  9. You can dream. Dreaming gives us a chance to live a different life. You can fly, swim, jump, walk, run, or do anything you want in a dream. You don’t have to wait until you are sleeping. You can close your eyes and just imagine it. See it happening.
  10. You can be happy. Sometimes people think that because you are smiling, that means you aren’t really hurting or sick. They just don’t understand chronic pain. I don’t think anyone could truly understand chronic pain without having it. A life of chronic pain means that our pain tolerance is pretty high, and that sometimes we can still walk and laugh and smile, even though we are actually dealing with some significant pain. We have to. You can live happily if you want to. You can smile and laugh and do what you want. Don’t let the actions and comments of others dictate how you live your life.

Diagnosis of chronic illness is hard. It is hard for the one diagnosed, for the family, and for the doctor. As long as everyone is understanding and supportive, everyone can still live a happy, loving life. You can do things. They may be different things now, but you can do them.

Handicap Parking with Invisible Disabilities

Many with invisible chronic illnesses know all too well how frustrating it can be to not be understood, or to be judged with the use of a handicap placard. When most healthy people see someone park in one of these spots, I think they expect to see someone elderly or in a wheelchair, or maybe using a cane or walker. This is understandable, as this is what society believes disabled means. But, the reality is that there are a number of invisible illnesses where a handicap placard can be extremely useful.

Invisible illnesses like arthritis, connective tissue disorders, autoimmune disorders, internal injuries, cancer, multiple sclerosis, and more, all could require the person with them to need the help of a handicap placard. For some, the reason is purely pain. Chronic, excruciating pain no matter where it is in the body can be disabling. Even if you cannot tell that the person is in pain on the outside, they may be battling with each step on the inside. This is because those with chronic pain tend to be better at hiding it than the average healthy person. Pain tolerance is much higher due to our ‘normal’ level being much different than ‘normal’ for those without chronic pain. People with chronic pain may not even know what it is like to not be in any pain at all, for some have had it their entire lives.

You see me walking from my car, quickly and with a smile, but what you don’t see, is that every single joint feels like it is breaking with each step, my head is pounding, my heart is racing, and the fatigue is making it hard to move my legs. But this is every day, every moment, so I have learned to hide and and just get on with my day.

For others, it isn’t about just pain, but fatigue, or even a heart condition that makes the heart race, or the person light-headed like they will faint. For some, it is about the weather. Heat and cold intolerances are more common than you think, and cause pain, nausea, lightheadedness, fatigue, etc. Just because it doesn’t look like someone is sick or hurting, doesn’t mean they aren’t.

Please don’t be that person that asks every person that doesn’t look sick whether they should park there, or worse make rude comments to them, or tell them they are terrible for parking in a spot they have a right to. You really have no idea what they are going through, and it is more likely that the person truly is disabled, than someone just abusing the spot. Let’s give people the benefit of the doubt. Next time you see someone parked in a handicap spot that doesn’t necessary look handicap, try giving them a kind smile, or opening a door for them. Kindness is contagious. You might change their day around. It is hard enough dealing with invisible disabilities, but to get constantly judged and rudely remarked at, only makes it harder.

Endurance and Optimism. We can get through this together.