Overwhelmed

Hi Rebecca, It sounds like you are doing all of the right things for yourself and your family. Taking time to heal and gain strength, and letting others help you is very important. I was so weak at first, I could hardly pick up a one pound weight in physical therapy. But I did build up strength over time, and I feel very good today. Take advantage of all of the physical therapy that is offered to you, and let the LVAD be your friend. I found that everything has gotten better, day by day. Take care, you are on the right track.

Hi, going from one extreme of activity to the complete opposite is a hard change. I am a bivad patient and I promise you every day will be better and you will be stronger. What I did (do) is force my self to get up and take care of the basic things. I needed help at first but you feel good. take care of youreslf jayde

You are doing all the right things and from personal experience it is very difficult at first trying to recover. Physical therapy is your best friend right now because that will help build your strength back and give you something to do. One suggestion I would make is don't think down on yourself. You've got others who love you and are missing you I'm sure. When you get doubts about yourself, your life, etc. just think of them and how much better life will be once you are reunited again.

I am 33 and got "sick" in the space of 3 month. They thought I had pneumonia and gave me antibiotics that didn't do shit to help so I went to the ER. They did a bunch of tests and during my EKG I went into cardiac shock. They found my incredibly enlarged heart and drained 40 lbs of fluid from me. They told me my heart would not last much longer (it would stop as soon as I stopped the dobutamine) and told me I needed a heart pump and a transplant. Next thing I know, I'm waking up with a tube in my throat and blinding pain in my chest back and shoulders. Luckly (lucky for them) they were able to remove the tube and give me a morphine button within 3hrs of me waking up. I was waving my note pad around telling them to move their asses and get the fucking tube out. The rest of my recovery went just as fast. I was out of the hospital 10 days later. My driveline site freaks me out. I am so a afrade of getting an infection. I had erosion from the cord laying on my wound. I felt like an invalent. The batteries and controller would budge under my shirt making me feel like a spectacle in public. The stomach cramps, trouble sleeping, incisional pain, muscle pain, lots of pain, headaches and weakness left me scared and depressed. I made sure to communicate this ALL to my LVAD team. They gave me Trazodon to help me sleep. Adjusted my meds and set me up with a wound care specialist and cardio rehab. Exercising really made me feel much better and being active improved my head space. They helped me improve my driveline dressing change technique and now I change my own dressing and it's healing up nicely. I got a bunch of ideas on how to wear my LVAD online and am now much more confident in public. The only bullshit is that my team won't give me anything for pain. They are worried about the opium epidemic. Well they are causing it cuz I would totally buy it on the street if I knew how. My advice: talk to your LVAD team and doctors. Make them give/adjust your meds as nessary and take them on time as directed. Exercise. Don't push yourself. If you can't get into cardiac rehab right away, go on walks. Make sure your team shows you how to care for your drive line exit site and follow instructions to the letter. Follow your diet plan. Things WILL get better. Stay positive. You're not alone. -MegaStation