Heart Transplant

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Hello :)

I’m new to this app, I’m hoping to meet people who have similar illnesses and struggles, it’s hard finding anyone who can really understand what it’s like. Adding all my hashtags hoping that I’ll meet people going through the same things I am!if anyone wants to chat shoot me a message :) #ChronicIlless #Gastroparesis #PulmonaryArterialHypertension #PulmonaryHypertension #HeartTransplant #LungTransplant #heartfailure #MastCellActivationDisorder #EhlersDanlosSyndrome #HickmanLine #FeedingTube #Gtube #PrimaryImmunodeficiency

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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!

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Living with Congestive Heart Failure

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.

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Anxiety, Depression and Fibromyalgia

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.

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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

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After Christmas

As someone you has fibromyalgia, chronic migraines, and who is a heart transplant recipient of 10+ years, I find that Christmas gets harder & harder every year. There is so much noise and smells and chaos, etc that it really isn't enjoyable anymore. I have to put on a "mask" and tell everyone I'm great otherwise I get the, "what is wrong?" Or "I'm sorry." Or "It's Christmas what do you mean you hurt?" No one in my family has ever bothered to get to know the real me or has ever really wanted me to tell them how I truly feel. No one knows how to deal with the true answers. I'm writing because I want to know what you do to pick yourself back up after the chaos & exhaustion from Christmas? I'm in a hole and having problems surfacing. Any advice or relatable experiences would be helpful! -Keilee

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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

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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.

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