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Courtney V. Family Member

LVAD 5/25/17 for my Dad

Tue, 06/06/2017 - 2:43PM
My Dad had his LVAD put in on 5/25/17. He seems to have had a new issue every, single, day, of his recovery so far. Hours after the surgery, they said he had bleeding in his chest and had to take him back and open him up a second time (then couldn't find the cause!). Then had to give him a lot of blood (the blood transfusion hasn't really stopped to this day- keep giving him more here and there). Then he had pnuemonia, then they found MRSA in his nose, then his main lead into the heart was twisted (had to take out), then he got a blood clot in his neck, then he had some kind of infection causing 103.2 fever, then had kidney function drop (also a diabetic), they couldn't get him off of the vent, finally switched to a trach two days ago. Now they can't get fluid off of him quick enough- they drew out 2 liters (!!!) of fluid yesterday, but he is just as swelled today, so now they are talking about starting dialysis. Also, his stomach drain tube has some blood so they are trying to find what's causing that and to fix it. I just want someone to tell me that all of this is "normal"?! for this surgery.... I just don't know when to panic and when to just worry at a normal level. What's even more stressful is that he is about 8 hours away from me and I stayed for 10 days but had to go back to work.... so I am stressing long-distance. : ( My poor Mom has been there the entire time. I just need some reassurance.... please....
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Courtney V.

Fri, 06/09/2017 - 5:13PM
34 Reads and no one has commented.... I keep checking this every day looking for some reassurance. Yesterday was the first day that my Dad had no "bad" changes, and just remained the same.
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Joann M.

Mon, 06/12/2017 - 12:53PM
How is he doing now, hopefully better. Make sure some one can relive mom occasionally. Hope he can get up and walk and is home soon
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Courtney V.

Tue, 06/13/2017 - 3:30PM
He is now on dialysis, they are getting about 3 liters of fluid off of him each day. It's supposed to be temporary... He also still has infection in his right lunch, which they are cleaning out (bronch procedure) almost every day. They have turned his sedation very low or off some of the time. The Dr said it will be a very slow and long recovery. This Thursday will be 3 weeks post-surgery. Mom has had lots of visitors and support through cards, texts, goody baskets, money, etc.- but she will not leave the hospital. The waiting room is nice for a waiting room but not the same as real, restful sleep. Thank you for the comment, I too hope he can get up soon, I think that would help his body to recover more quickly. I just can't imagine being in his state for this long and waking up to realize it's 3 weeks later. We are remaining positive.
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Tammy T.

Wed, 07/12/2017 - 5:53PM
Praying for your dad. My dad had is LVAD surgery on 5/31/17. We had two bleeds where they had to go back in. We felt like he would move forward one step and take three steps backward. He also suffered with 3.5 weeks of severe icu delirium and depression. They did a Ct scan to see if he had a stroke but nothing definitive was found, ( neuro would want a MRI which no one with a LVAD can have.). So 43 days later we are headed to rehab. I truly understand how you feel. Keep the faith and stay strong, we are sending prayers from Atlanta Ga
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Mary E.

Wed, 06/21/2017 - 3:55AM
My husband is in ICU, 2.5 weeks after LVAD/RVAD placement; off vent, out of bed to chair some days, having bleeding issue, fluid balance problems, still seems to be experiencing some heart failure issues. How is your dad? On mom in waiting room: There is no rest unless I am by his side. I finally got an apartment right near the hospital; I leave late and come back early, and stay over if he becomes unstable or just scared.
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Courtney V.

Sat, 07/08/2017 - 4:06PM
Dad is still in the ICU. Had surgery 6 weeks and 2 days ago. They just got him out of the bed two days ago and he is hoisted out using a lift. He is still on the trach ventilator at night, dialysis, the pnuemonia is almost gone, has other infection. He also had so much fluid it went to his brain (encephalopathy), and had some nerve/muscle twitches for a while. So now we aren't sure how he will recover mentally. Some times he is "normal", but mostly not himself, doesn't remember going to the hospital or where he is (says he's in a nursing home). Will not keep his hospital gown on... He does physical therapy every day and dialysis, and that (anything) wears him out. His weight has flucuated by 90 lbs since he's been there. Took a total of 60 lbs of fluid off of him and now he's 40 lbs down from his normal weight from his body withering away. My Mom has gone home one time for a few days (they live 2.5 hours from the hospital) during all of this. I don't know how she's hanging on at this point, and I don't know if this is what any of us bargained for. His heart may be stable, but we may have traded a brain for it. Only (an even longer ridiculous amount of) time will tell. If you believe in positive energy or prayers, please remember them. ❤️
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Henry R.

Tue, 07/11/2017 - 12:55AM
Dear Ccase816, Sorry to hear that your Dad is having such a difficult time. My wife and I will pray for you and your Dad and Mom and entire family. We will keep you in our thoughts as you go through this difficult time. Your story reminds me how fortunate I have been with my LVAD experience. It has been a real blessing to me, and I wish blessings on you and your family. Hank and Patty Richmond
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Loretta K.

Sun, 07/09/2017 - 6:42AM
Good morning , my husband had a lvad implanted in April 20 2017. He had a few issues also had a fever, needed a few blood transfusions, needed a temporary right vad, had to have a trach , it is a slow recovery we went home the end of may.He didn't need to go to rehab , we had a physical therapist come to the house. I have to say if his icd didn't shock him a few times he would of been fully recovered.i will be praying for your dads speedy recover
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Garth F.

Mon, 07/10/2017 - 12:03AM
I hate to be the bearer of bad news but there is absolutely not a "normal" when it comes to the LVAD. I am so sorry that you, your mum, and your dad are going through this but its a real roller coaster ride. I can tell you that it more often gets better rather than worse in the long run. I know far more people that have done well and would do it again if needed than those that would say no. How is your dad doing now? How are you and your mum? Hopefully things have improved since your original post. I was implanted back in February 2017 and have not looked back. It was certainly a struggle to begin with but everyone's journey is different. There is not only physical challenges but mental ones as well. It may not be easy for your dad to come to terms with his new life. He will get there in the end but he will need support. Take care and I hope the world starts to look a little brighter soon.
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victoria g.

Tue, 07/11/2017 - 11:58AM
i know and believe that everything will work out for you family as a whole, there is someone higher than us watching over us. My husband had been going a lot from the day he was told he had heart starting at a very young age open heart surgery, colon cancer, and so much more. He is 65 years old, and it has been a long road for him, i being the caregiver have decided to stand by my husband, after you never know when i could have physical condition, i realize that we have along road to travel, but grace in this life, i at this time feel that we can make it with patiences, kindness, and loving each other every moment of our lives, your mother seems like she is that type of wife to your father. I think people who have these devices in them think diffrently and value life more, because it has made me realize that every is truly not promised to us! One Day At A time! praying
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Molly M.

Tue, 08/03/2021 - 9:28PM

Hello, thank you for sharing your story. Did your dad's condition ever improve? Is he still alive today? Your story sounds so much like ours does right now. My father in law got the LVAD on July 13th 2021. During the procedure he ended up needing an RVAD as well. The surgery took 14 hours and then 2 hours later he was rushed back to the OR for bleeding for another 5 hours. From then on it has been nothing but bumps in the road. Next he had bleeding in his stomach, then they went in and cauterized it. Then the RVAD still hasn't come out and they thought 1 week was all that would be needed. Then his oxygen was too low so back on the intubation tube. Now liver has been getting worse and worse each day, and they found bleeding in his lungs and his kidneys are starting to fail. He has also had delirium. The doctors said he is in multiple organ failure. It has been exactly 3 weeks since the LVAD/RVAD. Now he is sedated again. My husband has gone to the hospital every single day and I worry he won't be able to accept the possibility that his dad might not survive. His entire life it was only him and his dad. Their bond is so strong. I am so scared and have this sick feeling. I don't want to say goodbye yet, I'm not ready, but I feel like it will take a miracle to pull through from all this. 

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Courtney V.

Wed, 08/04/2021 - 10:03PM

Hi Molly,

He made it! He's still alive. My Dad ended up spending about 4 months after surgery in the hospital and then rehab....so he had a very long road to go home. He still has mobility/balance issues (out of breath too), but I believe he never fully embraced his physical therapy. He would only do it when the therapist was there... weekly maybe. Plus he had spent 3 months in a hospital bed so had no real muscle and was completely starting over.

With that said.... it's so hard to watch. You don't know what each day will bring. I didn't think they were ever going to go home! I had my Mom start journaling each day just to keep track and as a form of therapy. I also made her take a daily walk or trip outside of the hospital every day.

I can only say take it one day at a time...I hope and pray that he gets his miracle. I know how impossible it feels when it seems like every day is a new, huge issue, but it is possible. A lot of the nurses and Drs we had said the patient's mentality (positivity) has a lot to do with recovery- and my Dad always said "I am blessed" no matter what was going on. 

Hopeful that you get through this week on a positive light. ❤️🙏

 

 

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Courtney V.

Wed, 08/04/2021 - 10:16PM

Hi Molly,

He made it! He's still alive. My Dad ended up spending about 4 months after surgery in the hospital and then rehab....so he had a very long road to go home. He still has mobility/balance issues (out of breath too), but I believe he never fully embraced his physical therapy. He would only do it when the therapist was there... weekly maybe. Plus he had spent 3 months in a hospital bed so had no real muscle and was completely starting over.

With that said.... it's so hard to watch. You don't know what each day will bring. I didn't think they were ever going to go home! I had my Mom start journaling each day just to keep track and as a form of therapy. I also made her take a daily walk or trip outside of the hospital every day.

I can only say take it one day at a time...I hope and pray that he gets his miracle. I know how impossible it feels when it seems like every day is a new, huge issue, but it is possible. A lot of the nurses and Drs we had said the patient's mentality (positivity) has a lot to do with recovery- and my Dad always said "I am blessed" no matter what was going on. 

Hopeful that you get through this week on a positive light. ❤️🙏

 

 

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Molly M.

Sun, 08/15/2021 - 11:20PM

I’m so happy to hear he recovered and is still alive today!! It’s definitelty a long tough road. Unfortunately my father in law passed away today. His body just didn’t have any fight left in it. After so many bleeds in his lungs and digestive tract his organs just started to fail. The skin at the site where the LVAD comes out had become necrotic and he was unable to process IV nutrition due to the issues in his digestive tract. The doctors said there was nothing more they could do and that he had no chance of survival. We made the tough decision to turn off his medications and the VADS. He passed away about 20 minutes later. It’s devastating and I wish our story didn’t end this way. Again, so happy for your family and sending love your way. 

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Courtney V.

Mon, 08/16/2021 - 1:41PM

Oh Molly, I am so sorry for your loss. I am so sorry that it turned out this way for you and your husband. I will keep you in my thoughts and prayers during this heartbreaking time. ❤️