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Meghan C. Caregiver

LVAD Recovery

Hello, 

My name is Meghan and my boyfriend, Chris, recently received a HeartMate 3 on December 27th. I am 25 years old and my boyfriend is only 30. He was diagnosed with dilated cardiomyopathy on Halloween, so this process came very quickly for us. Chris has been medically sedated since December 14th and there has been no talks of him coming off sedation anytime soon. His recovering is going slow, as we are reminded daily that this is a marathon not a sprint. This website has allowed me to gather more information than I ever expected. I was curious if some could share their recovery stories after getting a LVAD. I hope to share your stories with mine and his family to reassure the process works. Thank you all in advance. 

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Gayle W.

At 82 soon to be 83 I am truly Blessed because I have had my LVAD since February 1, 2010. I feel good and keep doing what I want to do so your friend can come through this good. Don't look back only forward. God Bless you both and I will keep you in my prayers.
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Sheri B.

Hi, Gayle!  I'm sure this process seems very slow and particularly stressful since both you and Chris are so young. To read a couple of stories about the journey of some VAD warriors, please go to this link to my company website.

https://www.vadsupplies.com/lvad-blog-2/

Wishing you and Chris great success in this journey.

Sheri

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In reply to by Sheri B.

Angela C.

I can imagine how you must be feeling right now 

my husband had the heartmate 3 implanted on January 14th 2016 and he deteriorated very quickly there after as 2 days after having the implant the right side of his heart also failed and his kidneys etc took a hit and he was in an induced coma for 3 months it took a very long time for him to recover and he had to have long term physio etc. Everyone’s body is different but all I can say is keep strong and he will recover it’s just a matter of time 

he is still waiting for a transplant but is at home and it is completely changed our lives 

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Michael B.

I was also diagnosed with dilated cardiomyopathy in 2015 when I was 35. I have been on medication since but this past year it got progressively worse and had the lvad placed on 11/29/18. The only complication I had was after surgery my right side couldn’t keep up so I was sedated and on the breathing tube for 5 extra days. This was brutal for me because I kept waking up and choking on the breathing tube. I was tied to the bed so I wouldn’t pull the tube out and couldn’t communicate with anyone. Once they pulled that out, I was fine and after three weeks I went home. I have been home slowly recuperating now for the last 3 weeks and start cardiac rehab in 2 days. This is a slow process, just got to take it one day at a time. You will have good days and bad days. But will get through all of this 

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mike d.

hello my name is mike in elgin in. why is your bud chris sedated. is there more to this than this posting? and most inportantly how are you dooing being not sedated?  now for the famous alvadd dressings, check for ins coverage for his after care to see if that is covered. than there is the cash element for the on going ins. thy pa or ssdi and see if you qualify for that depending on what state you are in. that is not a fast process so keep your PAPERS  STRAIGHT. those stupid files and all. now welcome to the game. keep fighting ask the docters for more info and QUESTION A LOT. this was not c cheep opperation so get your moneys worth out of it.thal to the social security person in the hospital for help, and social service agencies. whoooo i am exausted just taking about this and,,,,,, my back in s killing me!!!!!!   oh yea do not forget about the guy up staires on the top floor for that help.  keep hang and banging this is one of those life steps you have to give away if you want.    CHEERS to you and chris.

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Atriece J.

Hi Meghan,

My husband recieved the HM3 on August 9th of 2018 and he was in ICU for a little over 2 weeks on a breathing machine. At first they could not find out why he was not breathing on his own because it wasn't a norm for this procedure at his age 48 they expected a fairly quick recovery, but then they discovered that his lungs were slightly punctured during surgery.  Nevertheless to say, once his lungs recovered he healed alot faster from the LVAD put procedure and was out of the hospital after 4 weeks. 

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gilbert b.

Meghan

My name Is Gil i was a clinical study to help get Heartmate 3 approved for other patients

such as Chris to get a better pump than the heartmate 2. It was AT LEAST 1 year before i began

to accept the pump and began to build my self worth somewhat back to reality but i was getting stronger as each day went by. My poor wife she was the real trooper thru all of this!! I had a lot of ups and downs in the beginning

as it was anew pump and they did not have answers to the problems i was having. But they always got to

the bottom of it, so people such as chris wont have to go thru what i did as they now have the answers. But my 

Quality of life has grown quite a bit . WE put in a 16X30 stone  patio and numerous other big projects i would 

have never attempted as being to sick.so i would say Chris has a good start to getting back to being a healthy

person just god letting him rest a bit. Miracles do happen as i was unable to give anymore when god stepped in with the Lvad.  I am living proof as to miracles as my lvad was put in 11/16/2016. I was the 8th out of10 the hospital got for 

the clinical study and i am doing ok i think i have been through the worst of it. I will pray for Chris and yourself Meghan

as he is going to need your strength to get through this . Keep your head up And STAY strong. God Bless the 

both of you.Keep in touch !

Gil B

 

 

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june B.

Hi Meghan,

II received my Lvad on November 6, 2017. I am now 70 years old and doing great. I know it seems like a long, slow road but your boyfriend will recover. I am back to doing Curves (exercise circuit) 3 times a week, volunteering, shopping, and doing all of the things I used to do. Do not give up. It will get better, I promise. Continue to be an awesome caregiver. My sister was my main caregiver. She was so supportive and encouraging which helped me so much. I will keep you both in my prayers.

June B.

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Nichole L.

Meghan, It looks like you posted a while back now so I hope things have improved a little for you a your boyfriend. As others have posted I am curious about his experience and need for sedation? Was this pre- or post LVAD? Did his RV not support the LVAD? Is he doing better now? On the surface level (at least age wise) Our story is very similar to yours. My boyfriend Andrew was feeling great at age 26. He had been diagnosed with cardiomyopathy at a young age but it was managed well with medication. In July of 2017 he started feeling heart failure symptoms and after 62 days in the hospital he received an LVAD late October of 2017. He was only intubated/sedated for a day or so but remained in the hospital post surgery for about 14 more days. The recovery was HARD with lots of pain, frustration, and exhaustion but it did get better day by day. He had a pleural effusion mid-November but other than that he has had no complications. About 3 months after surgery he was back working full time, 6 months out we were biking 5 miles a day, and today at about a year and three months post surgery, we run or bike daily hike travel and we just bought a house! :) I on the other hand seemed to get worse for a while as he got better. As a caregiver the first 3 months post surgery I felt exhausted and in shock but for the most part was keeping it together. The next 3 months I was a complete wreck I felt sad, depressed and anxious and a little anger and jealousy at my friends "normal lives" set in. It seemed that once Andrew felt physically better he immediately fell right back into his old life but it was a lot harder for me to do that. I was very tearful and worried constantly. Now a little over a year later I am feeling like my self again too but it was a slow process. Andrew is currently on a heart transplant list but we hope to get 5 or maybe more years out of the LVAD first. My thoughts are with you and your boyfriend! Feel free to reach out if you need anything nlange7025@gmail.com
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Gayle W.

Today I had my monthly appointment at Mayo and things are still looking good for me. Thanks for the contacts from Joe Hansen and Sheri B. Technology is great. I am so Blessed and enjoying my life. Stick with it and things will be great for you. Thanks again for you reply's. Also from Angela C.
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Meghan C.

UPDATE: 

Chris is doing extremely well. He was sedated because his body took a hard hit. He was on echmo and impella so that is why he was mostly sedated for so long. After he received the lvad they were worried about the right side of his heart for a while. They didn't implant a rvad in hopes that the right side will learn to pump with the lvad. 

After 32 days in the ICU he has gotten the clear to get moved down to the step down unit! They woke him back up on January 4th and he's finally starting to be himself again. He is on a trach collar and will get the video test done tomorrow to see what he can eat and drink. 

Thank you all for the kind thoughts and prayers. I've learned more than every how long this process will be, but each day seems to get better and better. Slow and steady wins the race!

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In reply to by Meghan C.

june B.

Hi Meghan,

So glad to hear that Chris is making progress. It is slow but take one day at a time and he will continue to progress. I am 70 and had my lvad implanted in November 2017. I cannot tell you how good I feel. I have so much more energy and am able to do the things I used to do. Chris will get there too. You sound like an awesome caregiver which is so important. I will continue to keep you lifted up in prayer. 

June B.

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In reply to by Meghan C.

Ashraf H.

Hello Dear. 

My Father had an LVAD from Medtronic ( middle east - Lebanon) on May 2018 and he passed away on October 2018.

 

* I still have everything included in the LVAD kit except the pump. 

_ 1 Battery Charger 

_ 4 Batteries 

_ 2 Controller 

_ 2 waterproof bags

_ car & home adapter

 

Everything like New. 

I was hoping to sell it back to you. 

Thank you for your time and hope I'll be hearing from you soon.

 

My name is Ashraf Haidar 

personal phone number : 0096176666268

 

 

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Sheri B.

Meghan,

Thanks for the update on Chris. I'm so glad to hear he is doing so well! 

Sheri

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Angela C.

Hi Meghan that’s great news that Chris is getting stronger and better each day 

it all takes time and you need to keep the faith and stay positive as hard as it is. I’ve been going through so many ups and downs as a caregiver and have been diagnosed with PTSD and I am curryhaving psychological support. I’m getring better emotionally and mentally and all I can say is keep moving forward 

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Andrea C.

Hi Megan and sorry for my english because i’im italian.

I’m 30 years old like Chris and i’ve read your stories; i think that every day we have to thank the Lord for our health.

My father had hm3 implanted november 2017; he arrived ah surgery in very bad conditions and stand in ICU for 3 weeks, then in Hospital for others 3 weeks and finally 15 days in a rehab center.

April 2018 he returned to work and day by day we enjoyed this New life :summer al the lake, going out for walking ecc

Now the new challenge is entering the transplant list because he was a bridge to candidacy.

Chris Tonight i’ll keep you in my prayers.

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In reply to by Andrea C.

Hanunah U.

Hi Andrea. That's fantastic! Your father was able to go back to work without any complications.  It seems the recipients with HM3's don't have as many complications as the one's with 2's.

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Hanunah U.

I have your friend in my prayers. 

Hanunah (haa noo naa)

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Fangying J.

My mother had LVAD installed four weeks ago. Now as it approaches her coming home soon, I am nervous even scared.  She is somewhat depressed as life will never be same. I felt lonely too as I have nobody to related.

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Cindy R.

Hello, Although I am much older, I can relate to having the rug pulled out under you with no warning. When I was first diagnosed, I was put on Amacor through a PIC line. After being back home for about a week, my heart gave out and I was rushed back to the hospital. When they had completed installing the LVAD, my right heart stopped, so they had to put me on a RVAD, which you cannot leave the hospital with. It was removed 3 weeks later. Several organs were wanting to shut down, so they put me in a medically induced coma for almost 2 weeks. When I came to, it took quite awhile to get my mental facilities back...what was real...what was a dream...what was drugs. I was 1 month in the hospital, and had lost so much muscle mass, that I could not stand by myself at first. When the wonderful day came and I was discharged, I thought I felt wonderful, even though I still had significant pain. I realized that after 6 months post surgery, I was finally back to myself. It does take time, and things can get really grim, but faith has brought me through. When he is discharged, please do not mess with your dressing changes. Infection could be death, so don't give in on a dressing change, no matter how busy life gets. I was implanted initially in 2010, almost died due to infection in 2017 and had the entire system replaced. If you have an LVAD, your INR and infection are the two things you really have to keep up on. I can't tell you how awful it is to almost be sent to hospice because of an infection. If the system wasn't completely replaced, I would have died within a year. Life is so good, and I do not take anything for granted anymore, and I never miss a dressing change or an INR appointment. Wishing you both the best!
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In reply to by Cindy R.

Hanunah U.

Hi, so happy you're doing better! They will not give a a change in the machine because my body wouldn't allow for it! So, I'm praying and keeping with the antibiotics until>

So, enjoy everyday! I will!

Hanunah