Heart Transplant

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    Community Voices

    Do you celebrate Surgery Anniversaries? #Disability

    <p>Do you celebrate Surgery Anniversaries? <a class="tm-topic-link mighty-topic" title="Disability" href="/topic/disability/" data-id="5b23ce7700553f33fe991445" data-name="Disability" aria-label="hashtag Disability">#Disability</a> </p>
    Community Voices

    When is it ok to give up?

    TW: depression, trauma, terminal illness *super long vent, sorry*

    I feel like this #Cancer is taking everything away from me, what little I had left. Prior to diagnosis in April, I had to quit my job for health reasons and filed for disability (medically approved now but for the cancer but still no final word from them). I was struggling with #CPTSD , #MajorDepressiveDisorder , #ObsessiveCompulsiveDisorder , #Fibromyalgia , #PsoriaticArthritis , #Asthma , #sjogrens , #SevereAllergies , #Bursitis , #PolycysticOvarySyndrome , #DiabetesType2 and a bunch of other complications from all of these things plus a few more diagnosed illnesses. All whilst trying to get a divorce (still trying to get it).

    So in April I go to the ER thinking Covid. Nope. Lungs both full of fluid from #CongestiveHeartFailure . Apparently I had a heart attack and didn’t notice as I was told a lot of chronic pain patients don’t because we’re used to random severe pain. Also they found a grapefruit sized tumor on my liver, stage 4 #BileDuctCancer in my #liver and it had spread to some lymph nodes on my abdomen. I have no medical insurance.

    So now here we are in July and I’ve been in chemo since May. I’ve had a few minor surgeries/procedures and I have to have my port removed/replaced which is why I’ve been in pain there since May.

    Now it turns out on top of mouth problems, fatigue, low white blood cells as side effect to my #Chemotherapy , I have been diagnosed with #ChemotherapyinducedPeripheralNeuropathy which has been the most painful experience of my life. They said it was a severe case.

    They also think either a #cateract or #Glaucoma in my left eye which is why my eye hurts and I can barely see. Either could leave me blind. I’m an artist by trade, I’ve won awards for my cakes and every one of my hobbies is art/craft/visual. Now I can’t tolerate any amount of light without it being painful and I can’t do anything with my hands without being in major pain from the neuropathy. I can’t enjoy anything or do anything for myself, already fell down the stairs last week because of my vision/neuropathy combo.

    Also, I’ve had to get 2 Neupogen (helps bone marrow make white blood cells) shots this weekend and like every other week. The bone pain makes my body shake uncontrollably and nothing will help it.

    All this has led to me being a walking pharmaceutical cocktail and the side effects are brutal. I picked up a new med today, tonight my little medicine bag overflowed and I broke down. I just turned 40 in May. I have more meds than years on this earth. I have a terminal illness that makes me ineligible for the heart transplant that I need but im technically not dying according to my oncologist.

    So at what point is it ok to say I’ve done enough, I’m tired and I give up, I want out? Daily living is torture and there’s no joy.

    Thank you if you made it this far!

    18 people are talking about this
    Community Voices

    Both of my parents passed away of Congestive Heart Failure, my mom almost three years ago and my dad almost four months ago. So, I guess you could say it runs in the family.   I never thought in a million years that I would be diagnosed with Congestive Heart Failure, but I was. It will be ten years on November 21 of this year. It was interesting how I was diagnosed. I had routinely been giving blood at the local American Red Cross and the nurse noticed an irregular heartbeat when taking my pulse. She said, “has anyone ever told you that?” I was like, “no, I don’t think so.” Around this same time, I noticed that I was having shortness of breath, but attributed that to possibly walking too fast during my daily walks. I reached out to my regular doctor, told her my concerns and she ordered a stress test. It involves walking/running on a treadmill. When I had my appointment at the local hospital, they had to stop my stress test because I was breathing really, really hard. The technician stopped the test immediately, because of that. I started to get a little concerned, when they said, “hey, do you have time for a cardiac catherization?” I was like, “let me check with my husband, he’s expecting me back home soon.” Once I called my husband (he was watching the kids) and told him what was going on, he told me to go ahead and do the cardiac catherization since they had an open appointment. Okay, now I’m going to get a little graphic here. They put you flat on your back and put a catheter through your groin and up into the heart to see what the heck is going on. I was pretty chill, because I was positive they would just tell me I was stressed out (2011, up until that point was an extremely stressful year). After the cardiac catherization, I had to rest a bit. I will never forget what the cardiologist told me when he came in the room to tell me the results. He said, “Mrs. Blatnik, you have Congestive Heart Failure.“ Pardon me?? The next question immediately out of my mouth was, “so, what is the worst case scenario?” His matter-of-fact response was, “heart transplant.” It was at about this point, I began to feel like I was in a really bad dream. Shortly, after the cardiologist left, my husband, Lauren and Dominic came into the room. I think they were all surprised that what was supposed to be a stress test, ending up with me lying in a hospital bed!! Shortly after my family visited and left, my blood pressure took a dangerous turn. I remember feeling a little dizzy and me pushing the button for the nurse, because I was thinking something odd was going on.  The next thing I know, a bunch of doctors and nurses ran into the room, trying to get my blood pressure stabilized. It was like 30/10 or something around there.  I think they gave me a medication to bring it back up (I don’t remember) and I started to feel better and my blood pressure went back up. I was kept overnight in the hospital, because of that little episode and I went home the next day. All I kept thinking in my head was that I would need a heart transplant and/or be hooked up to an oxygen tank for the rest of my life, I was just 48 at the time. Luckily, the cardiologist has me on a “cocktail” of medications that keep everything in check. I make sure to NEVER miss the medications and I go yearly to the cardiologist. When I tell people that I have Congestive Heart Failure, typically a look of shock is next. Once I tell them it is managed mostly by medications, I see them relax.  I have an echocardiogram coming up on September 27. Since my dad’s passing in December of 2020, I definitely have been thinking more about my own diagnosis of Congestive Heart Failure. What if that nurse hadn’t noticed my irregular heartbeat that day in 2011 when I donated blood? She literally saved my life. I like to think she was my “guardian angel,” because I only saw her that one time and never again. Neither of my parent’s Congestive Heart Failure diagnoses came soon enough for them to be treated for it. I am very blessed that I was and I don’t ever take a day for granted.

    Community Voices

    I have been treated for anxiety and depression since my daughters heart transplant in 2016, going through counseling I was diagnosed with PTSD due to childhood trauma- I was abused sexually, physically, verbally and mentally by my aunts boyfriend, my aunt, my mother and brother respectively. My daughters transplant was the catalyst that sent me spiraling- I thought I had life together. I have cut those people out of my life entirely but just yesterday I was diagnosed with Fibromyalgia. I feel like they are winning all over again. Another way they have complete control over my life, as I read where childhood trauma can be linked to Fibromyalgia. I am on an antidepressant and an anti anxiety medication, also two high blood pressure meds. I feel broken but I know its a good broken because rock bottom is where you can finally climb to the top.

    3 people are talking about this
    Community Voices

    Prayers needed

    So alot has been goin on. And I'm trying to keep everything together in my mind but its all scrambled. I have an uncle who is close to my mom she is the eldest and he the youngest is in the hospital. His heart is at 47 bpm he needs a heart transplant. And I have some other stuff on my mind. And I'm in need of prayer or kind words. I just need comfort. I feel afraid and helpless and lost. #help

    2 people are talking about this
    Community Voices

    After Christmas

    <p>After Christmas</p>
    2 people are talking about this
    Community Voices

    Vent

    So I got some bad family news yesterday and had to comfort my mom who is the eldest of her siblings there were 5 now there are 4. She lost one of her brothers a few years ago to lung cancer and yesterday she got the news that her youngest brother needs a heart transplant. His heart is working at 10%. She cried the whole day and tried to talk to him but he is in denial about his health. His wife cut him off from her insurance so he wasnt able to take his heart pills which kinda had something to do with his diagnosis he also had open heart surgery years back and is a chain smoker which doesn't help. He's also going through a very bad divorce and not even his own daughters care for him. I dont know how his son from another marriage will take this news. They had a falling out a few years back but now they are close since his ex wife and daughters dont want anything to do with my uncle. So that's my vent/rant. I am worried. #Worrying #Family #afraid

    2 people are talking about this
    Community Voices

    Newbe

    I'm just sad because a good friend of 27 years just told me she needs a heart transplant. This is really bad news n I feel more sad because the first week of January she was planning on getting a puppy because she lost her dog 5 years ago n was ready to have a new companion n now she can't even walk up her stairs to her apartment.

    1 person is talking about this
    Erin Hernandez

    Preparing Kids to Visit a Sibling in the Hospital

    “How am I going to tell my older two kids that their brother isn’t going home this week as we thought, and that he may not go home at all?” I pondered as I sat helplessly waiting out the hours until our sweet baby, Peter, would have open-heart surgery, simultaneously wishing time would stand still in this moment and also speed up so we could get our child’s heart repaired and healed. At our doctor’s suggestion, our entire family was on the way to the children’s hospital where Peter had been since shortly after birth. Earlier that day Peter had been moved from his NICU room to the PICU to prepare for surgery. This weekend would be the first time our kids (then 7 years and 3 years old) had seen him intubated, sedated and with multiple IV lines. It was heartbreaking for me as a parent, and I had no idea how our big kids would react. As a parent, preparing oneself for a critically-ill child’s hospital stay or surgery can be all-consuming. However, additionally preparing siblings to understand and cope with what their brother or sister is going through can be downright overwhelming. When Peter was born, he didn’t even come home from our local hospital before being transferred to the nearest children’s hospital, which was over two hours away from our home. That hospital stay ended up being eight months long, where Peter underwent five catheter procedures, three open-heart surgeries, a heart transplant, and three other non-heart related procedures. Caring for our older children while Peter was inpatient was challenging, but just as important as making sure Peter was receiving the best care. These are some of the things that helped us. 1.Ask for a ChildLife specialist or someone trained in talking about what happens in the hospital in a kid-friendly way. ChildLife specialists can help provide resources for talking with siblings about what is happening to their impatient brother or sister, from child-friendly books to dolls with similar anatomy or devices as the patient. They can also bring activities and toys to occupy siblings during those long, boring hours in the hospital. Our wonderful ChildLife specialists brought books to help our older two understand the NICU and also provided several crafts. Yes, there may have been some paint projects by our 3-year-old going on in Peter’s PICU room from time to time! 2. Involve siblings as much as possible. It is natural for parents to be consumed with the information, decisions, and sheer magnitude of care for their inpatient child. It is also easy for siblings to fear being forgotten or left out. Older siblings may not feel a connection yet with their new brother or sister. Their source of stress may stem more from separation from parents and fear of displacement in the family than their sibling’s poor health. Reassure siblings that they are still important and loved, that you are still there for them, and no matter what happens, you will face it together as a family. We tried to send the basic message “This is hard and it might be scary but we will face this together.” Make it a priority, as much as possible, for siblings to visit the hospital and interact with their brother or sister. This might look like drawing a picture to hang prominently in the hospital room, reading or showing a book, or giving a special or beloved stuffed animal or blanket. Encourage siblings to make a connection by saying, “Your brother can hear your voice — recite the poem you learned in school. Tell him about the picture you drew.” Another way to engage siblings is to invite close friends or extended family to love on them. This might look like an aunt can taking a sibling for ice cream after school, or out to play on the playground near the hospital. 3. Be honest and encourage questions. We answered their questions with enough information to explain things adequately and satisfy their curiosity, but were careful not to overshare graphic medical information or theoretical scenarios. We were clear about the fact that Peter was very sick. Our kids didn’t know what a heart defect was (and my husband and I didn’t either, until Peter), but we shared, “Peter’s heart is sick because he has something called a heart defect. With this kind of sickness, Peter needs to be in the hospital so doctors can help his heart to get well. It might take a long time. We want to make sure that Peter’s heart is healthy before he comes home.” 4. Don’t make promises you can’t keep. Sometimes siblings may wonder if their brother or sister is going to be OK, or when he or she will come home. Address these concerns directly, but avoid making concrete promises that you have no real control over keeping. At one point, Peter was scheduled to be discharged after three weeks in the NICU. It didn’t happen, and he ended up in the hospital for several more months. 5. Kids may not be freaked out by the same things you are. Our older children visited Peter’s bedside before his first open-heart surgery when he was intubated, and also after surgery when he was on ECMO (life support). Seeing a baby with so many tubes and cords was intense, scary, and utterly overwhelming. I was concerned that our kids would be scared by everything on and around their brother. Imagine my surprise when one of the first things they commented was, “Oh look, he has bears on his pillow.” Older children may be more disturbed by the evidence of critical illness. It can be scary for anyone to witness that. Some children may not feel comfortable at the bedside. Validate their feelings, encourage them to visit, and if they need a break or more time to get used to the hospital, give it to them. Breathe and do the best you can. Having a child in the hospital is one of the most stressful experiences a parent can go through. During this exceedingly uncertain time, many of us long for something or someone to tell us what to do, how to act, how to make sense of everything transpiring around us, and how to simply survive. Unfortunately, there is no magic wand or one-size-fits-all handbook, no set of strategies or script that works for all families in all situations. Hold all of your babies close and love them the best you can.

    Community Voices

    My HLHS miracle

    On August 16th 2018 my daughter was born with HLHS, as well as other heart defects. She had 4 heart surgeries by the time she was 2 weeks old and her 5th January 16th 2019.

    March 2019 she went into severe heart failure and was turn down for future surgeries. In June she was turned down for a heart transplant.. in November I was told to focus on quality of life and keeping her comfortable. I was told I would be lucky if she lived till January 2020

    I wasn't going to accept that, that was it. After all, I fought too hard for her to live, to let her go without a fight. So, I knew that when I given the opportunity for her to have a risky surgery, I was going to take that risk.

    February 2020 she went into the cath lab and the anesthesiologist looked at me and said. "Some kids like Samara make it out ok and some don't make it out at all" I kissed her told her I loved her and keep bringing the doctors wrong.

    the next day the doctor who gave me nothing, but bad news for an entire year walk towards us with a big smile on his face and said "wow she looks great, she qualifies for surgery" ( to keep things short)

    On March 31st my daughter went into the OR to have her 6th heart surgery. (Her glen) during the covid 19 pandemic.

    She was in for surgery, out and home with in 72 hours and discharged from the hospice a month later

    In 13 days i get to celebrate my daughters 2nd birthday, because I didn't give up...

    Don't ever give up ❤️

    I'm so lucky to have my daughter 🥰

    Our journey is close to over, she still needs to have her fontan closer to 4 (that's when they predict,since she didn't follow the normal path)

    But she is doing so amazing and I'm so thank full 🙂

    2 people are talking about this