The Family Suffers Too…

I want to start a new post about something that is brought to my attention often. It’s about how family members suffer in the diagnosis of Brugada as well. Patients can get a little selfish and forget about the impact this has on many levels, especially on other people. It’s what I call the “domino affect.” You knock down a domino and the rest fall. One person is diagnosed and the others will fall. And I don’t mean the other people who will get diagnosed through genetics. Although that DOES count! After all one of us gets diagnosed and then others get diagnosed with us. What I am specifically talking about, getting messaged about and seeing with my own family, is the psychological impact on loved ones. Put the shoe on the other foot. What if we weren’t the ones with Brugada? What if our spouse or parent said to us “My life has just been put in an hourglass. When that sand runs out, I’m done!” How would we take the news? Wouldn’t we walk on egg shells now? Death is usually a surprise. In old age it isn’t so much a surprise. Im not saying it’s not devastating but we usually ARE prepared when someone is old. Brugada leaves no preparation.Its a thief in the night, pun intended!! Take it from me…I wasn’t ready for my father’s death. Even in the funeral parlor, I sat in the very back so I didn’t have to look at him up close. Maybe If I couldn’t see him, he wasn’t really there. When I went to the coffin to pray, I wouldn’t look at his face.This is just someone else laying here, not my healthy father! I didn’t believe it. I felt like he was sleeping. Matter of fact, the denial was so deep, when the whole thing was over, I was the last person in the room. They stripped the flowers and decorations away and he was just alone there in an empty room. I was horrified and stayed there telling my husband “We can’t just leave him alone! Why are they taking all this stuff away? Leave it here!” As if he was still alive and sleeping and it was his bedroom. I felt like I was hurting him by leaving.I felt like he would know I abandoned him when he “woke up.” My point is, no preparation for death is devastating. Absolutely horrible. Brugada does just that. We the patient have to sit around and wait for “the big one.” But our family does too!! Imagine the emotions and guilt they must feel daily. I’m just guessing but I’m pretty sure they walk through life saying ” What if this is our last birthday? Our last Christmas? I shouldn’t have fought with them this morning, what if he/she dies tonight?” Not just us, but our loved ones are walking around holding their breath wondering if tomorrow will ever arrive. So that aspect, of unprepared death, is extremely traumatic.Not just for us patients, but our family.

But what about on a different level…our inability to live normal or even think normal? I have changed certain things about my life. I’m afraid to be majorly active. I’m afraid to be alone in public. I’m afraid to drive. Does my family think that’s sad? Or is it frustrating? I’m sure it bothers them in some way. I have been so anxious since my diagnosis. I was put on an anti-depressant. I admit it. I’m not ashamed to admit it to you all. Life is bad enough with Brugada but the anxiety and depression is a killer. I felt it was best I seek help so I can get at least some of my life back. I feel guilty about all this and its impact on my family but for the most part I brush it aside. I’ll admit it…I don’t think about the impact on others often. I don’t wonder if they are sad or crying or fretting over me. Maybe I should. Maybe WE should. I never really considered it. What I DO consider is feeling like a burden. When I have limitations, I feel like a child that needs babysitting. Like I’m a ball and chain on my family’s ankle and maybe life would be better for them If I wasn’t here. At times I wonder if their life would be easier if they didn’t have to worry. So yes, Brugada patients think about their family but on a different level…we worry we burden you, we don’t worry if we sadden you. Does that make sense? And I can’t speak for everyone. I can only speak for myself. And speak for the emails I received in regards to this subject.

Ive discussed the mental aspect in regards to family. We stress them. We don’t mean to but it happens. For the most part we aren’t aware of it, so lets try to be aware of it to our best ability. This diagnosis has to be a group effort 🙂 But what about the PHYSICAL impact? Some of us won’t work out, we have no hobbies, stopped living and stare at the wall. We are afraid to move, exercise, practically walk… And what does it do to our family when they see those limitations? Are they understanding? Sad? Angry? Maybe both? I personally, at first was afraid of everything. It took damn near a year to get up and about. I danced and rode my bike at the gym a few months after surgery. But something big like horse back riding was a 9 month wait!!! But I’m here to talk about it! Nothing happened! I swim, dance, take walks, exercise, gave birth to my son! Hell,thats bigger than any activity I can think of lol! My family encouraged me to do things but never forced it on me to the point I was uncomfortable.They understood it was all in my timing. Even today, 2 years later, it’s my timing. When I’m ready to do things, I’ll do it. As frustrating as that may be for family, patience and understanding is imperative. Like I said, it’s a group effort…we need to keep living so our family members can live. But our family has to be patient. I asked a few of my family members how they cope with my diagnosis and limitations. My mother feels that she can cope well because I have an ICD. Although she cringes at the thought of what Brugada does, she knows the necessary protection is there. She’s happy I’m an advocate for it and learn and research so I’m fully educated about what to do and not to do, not just for me but for my kids with Brugada. Other family members say faith in God and his plans for me trumps all..he’s in charge and just accept that and be at peace.I know not everyone has religion but I am Catholic and I couldn’t handle Brugada without my faith so I agree with them. They also cherish each day with me. I sat with my husband to ask him how he feels. The day I was diagnosed he bust out crying hysterical which is highly unusual. The man never cries. The scariest part for him was my life WITHOUT an ICD, waiting for surgery. But like my mother, he rests easier now knowing I’m protected. Yes, he’s aware of inappropriate shocks and electrical storms but he said his coping mechanism is simply, don’t think about it. He feels if he dwells on it he will become neurotic and that will affect me and our children as well. He hopes for the best and takes one day at a time like me. He just doesn’t think about it. I can say one fear of his he won’t put to rest is me driving. He’s down right terrified of me driving. He won’t allow me to drive with the kids unless absolute necessary. He’s uncomfortable with me even driving by myself…I will faint, crash and die.That is what he envisions. If it’s possible for him to drive me somewhere, he will do so. But I don’t want to add to my anxiety so I DO drive myself because I also don’t want to become a neurotic. Am I scared driving? Hell yeah. But at some point caution has to be thrown into the wind and say…screw this! I’m alive and I have to live. Its essential. Its essential for physical health, mental health, our family members health and children’s health. Cope! Get up and get out! No one is immortal. How do you feel about the impact this has on your family?

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25 Comments (+add yours?)

  1. Dawn Price
    Jun 29, 2017 @ 14:23:26

    Sorry I meant to say he has the defibrillator for 4 yrs. He gets small pains.

    Reply

    • AliciaB
      Jun 29, 2017 @ 16:54:32

      Sometimes I get a little sore becuase of my ICD, especially when using my left arm alot. However, make sure he mentions it to his doctor to make sure there isn’t any issues with his ICD or infection

      Reply

  2. Dawn Price
    Jun 29, 2017 @ 14:22:05

    My husband has brugada and has pain in the heart. So you thinking it’s normal. He has the dog in now for 4 yrs.

    Reply

  3. Gloria
    Jul 01, 2015 @ 19:25:02

    Thank you for sharing all this valuable information. We are in the middle of genetic testing for everyone after our 40 year old son presented with a spontaneous Type 1 Brugada pattern on 4 separate EKGs and tested positive for the SCN5A mutation. He has two small children. Then our 36 year old son discovered the same pattern on his EKGs. Our 39 year old daughter has normal EKGs, but is being genetically tested since she has two small children, and our 33 year old son is slowly realizing that he must follow suit…he has a 5 month old baby boy. I visited the lab today to be tested myself, since my husband has had stem cell transplants for leukemia, and his results would be skewed. Now I wait and watch as my adult children navigate this information and make decisions about their futures. They do not feel ill in any way, and they have fortunately not lost any loved ones from sudden cardiac arrest, so it is difficult for them to accept the doctors’ advice for implantation. If anyone can offer suggestions for nudging them in the direction they know they should go, it would be greatly appreciated. Thanks!

    Reply

  4. Gloria
    Jul 01, 2015 @ 19:18:55

    Thank you for sharing all this valuable information. It’s so hard to have the entire family impacted in this way. We are in the middle of genetic testing for everyone after our 40 year old son presented with a spontaneous Type 1 Brugada pattern on 4 separate EKGs and tested positive for the SCN5A mutation. He has two small children. Then our 36 year old son discovered the same pattern on his EKGs. Our 39 year old daughter has normal EKGs, but is being genetically tested since she has two small children, and our 33 year old son is slowly realizing that he must follow suit…he has a 5 month old baby boy. I visited the lab today to be tested myself, since my husband has had stem cell transplants for leukemia, and his results would be skewed. Now I wait and watch as my adult children navigate this information and make decisions about their futures. They do not feel ill in any way, and they have fortunately not lost any loved ones from sudden cardiac arrest, so it is difficult for them to accept the doctors’ advice for implantation. I send them links to the research I have found, but if anyone can offer suggestions for nudging them in the direction they know they should go, it would be greatly appreciated. Thanks!

    Reply

  5. lees
    Jun 16, 2015 @ 10:27:57

    Hi Alicia

    Thanks for this post i can definatley relate- my family have deffinatley suff over the last few months whilst i have been going through various diagnostic procedures the not knowing can be so stressfull. I have become so scarded to do anything that its impacted me socially and my my poor family.
    I had my ajmaline test today- They didnt have to terminate the test and i have been told i have to wait 2 weeks for results ( another waiting game) there was a few little changes on my ecg but i was told they could be in the realms of normal- Its the not knowing i find hardest.
    Thanks to you for this blog it brilliant!

    Reply

    • AliciaB
      Jun 16, 2015 @ 11:18:22

      Thank you! You passed your test? That’s very promising! So do they think you have it or not?

      Reply

      • lees
        Jun 16, 2015 @ 12:09:34

        Hi Alicia
        Thnaks for the reply!
        I still dont know if i have it all they could tell me after the test today was that i had the maximum dose of Ajmaline and it didnt need to be terminated which is a good sign however there were some changes to my ecg that need to be measured by my cardiologist (goodness knows what that means!!!! ) the test was performed by a cardiac arythmia nurse so maybe they couldnt give results out they said i should get written to with my results im hoping all is ok but now i have an anxious wait!
        Love reading your posts! Your doing a great job!

      • AliciaB
        Jun 16, 2015 @ 20:25:08

        Well I’ll keep my fingers crossed.Let me know what they say 🙂

      • lees
        Jul 02, 2015 @ 10:52:55

        Hi Alicia

        Me again still no results and 3 weeks has passed 😦 apparantly my results are being discussed tomorrow with the arythmia nurse that did the ajmaline test and my consultant – Im really panicking now 😦 this waiting game has been awful the not knowing is so hard! one i know more i will update you further. Reading your story helps me stay positive

        Lees

      • AliciaB
        Jul 02, 2015 @ 17:51:34

        I’m sorry your still wiating. Why exactly did they not tell you your results that day? Most people either pass or fail that day and further plans are discussed then. Or at least I’ve been told that from others

      • Lees
        Jul 03, 2015 @ 12:48:44

        I have no idea why it’s taking so long I also was under the impression I would have been told on the day what my results were but i was told that my results had to be measured what that means I don’t know!!! my case has gone to be discussed today with the consultant and nurse that conducted my test. talk about waiting game 😦 it’s such a long process I’ve been under investigation since November of last year and I feel like my life is on pause. every test i have passed and the ajmaline i was goping would be the last hurdle 3 weeks on and I’m still non the wiser – Thanks for all your positive words your an inspiration xx

      • AliciaB
        Jul 04, 2015 @ 10:13:36

        Keep your chin up! You are almost at the end and I am hoping for great results! I think the fact that they didn’t tell you that day you failed is very promising! Keeping my fingers crossed!

      • lees
        Jul 15, 2015 @ 05:24:16

        Hi Alicia,

        I just wanted to give you an update on my test results so after 4 weeks of waiting for my results from the ajmaline test ive been told that my results were not as clear as they would have liked them to be (not the answer i was hoping for) and what this exactly means i cant tell you, however knowing this has now left me a nervous wreck ( im in panick attack mode now) and i feel iike this must mean i have brugada. I have an appointment on the 29th of July to discuss my results with my consultant as he has said he would prefer to explain them to me face to face rather than write it in a letter. Im so frustrated with this whole thing they let me walk away from my ajmaline test that i had without any problems telling me my results go off to be read by my consultant and i will be contacted in a week or so- 4 weeks later im being told this! and im still no clearer if i have it or not! It feels like a ticking time bomb. I have also been on beta blockers for the past 7 months since my problems started and im know panicking that i shouldnt be taking these as im sure beta blockers are not good for brugada??? Sorry im pouring it all out to you ive tried to speak to my husband about it and his response has just been ” im sure its nothing” which as we all know doesnt help! I hope your keeping well and the family are well.

        Lea

      • AliciaB
        Jul 16, 2015 @ 14:53:53

        Hi Lea. Well try not to worry too much and keep your fingers crossed. Maybe the news won’t be as bad you think. And as far as beta blockers, some are not safe, but many are safe. Im actually on a BB and its wonderful. It keeps my heart nice and calm and quiet

      • lees
        Jul 27, 2015 @ 12:31:27

        Hi Alicia

        I hope you had a great holiday!

        I wanted to give you another update on my ajmaline test results…….. They were classed as inconclusive! I cant believe it!!!! So im back to square one again! All my family are having ECG’s to see if there are any abnormailtys in there results that would indicate anything suspicious. My cardiologist has offered an implantable heart rate monitor to me to see if he can catch anymore of the palpitataions i complain about. I was really hoping i would get a conclusive result from teh ajmaline 😦 ! There was no reason for it to be inconclusive on the day i came off all my meds that i had been asked to days before so they wouldnt interfear with the result so im clueless! My father lives in spain and has sought a 2nd opinion for me and the spanish cardilogist is under the impression that genes can mutate over time and potentially that could cause Brugada! I will be having genetic testing done in September until then i continue to wait. I hope you are well!

        Lea x

      • AliciaB
        Jul 29, 2015 @ 08:01:45

        I can certainly see how frustrating this is for you and the family, but I guess inconclusive is better than being positive! I am very happy though that they will continue investigating this. Inconclusive is still not a good enough answer

  6. Denise
    Jun 14, 2015 @ 11:51:47

    I am new here, but wondering if anyone else has a young child (my 9 year old daughter has been diagnosed) with Brugada that can give me any advice. She has had 2 fainting spells just recently. She does not have an internal defibrillator yet- I was not ready to make that decision yet- any advice on that? I am so thankful for this group.

    Reply

    • AliciaB
      Jun 14, 2015 @ 12:04:43

      Denise are you on facebook?

      Reply

      • Denise
        Jun 14, 2015 @ 12:19:12

        Thank you Alicia- I am not on Facebook. My daughter is adopted and there is no way of finding her birth parents, so there is no one else in the family- I am so sorry your family has been hit so hard. Her channelopathy cardiologist said we still can wait a few more years before implanting the defibrillator- what are your thoughts with your experience? What state are you in?

      • AliciaB
        Jun 15, 2015 @ 11:22:14

        On Facebook there are support groups and many people who have children with it. You can connect and talk with them. I was told children aren’t offered an ICD unless they have an arrythmia because there are too many dangers putting one in a child

  7. Denise
    Jun 14, 2015 @ 11:43:39

    Thank you for this…i forget how sometimes it is hardest on me as the mom of a Brugada girl. I am always uneasy. Thank you for sharing your stories because I feel so alone and no one understands- your posts help me. My daughter has Brugada but even worse has another heart condition and another major syndrome- she is definitely a rarity.

    Reply

    • AliciaB
      Jun 14, 2015 @ 12:07:03

      When my kids were diagnosed I was devastated. I just wanted to die. I couldn’t cope but each day is easier for me. They are symptom less and if they follow after me they should be safe until their 20s
      Maybe there will be a cure by then

      Reply

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