LVAD - Experiences anyone?

[Trinity]

Hi there!

I did not join the forum for myself but for my dad (64y). He's going to get an LVAD (probably next week) after several heart attacks, two bypass-ops, stents and so on. He now reached a final heart insufficiency and they are going to do the surgery very soon. It did not find any german forum that deals with VADs, so I finally ended up with google and this forum here. I know that the main topic here is not VAD but valve replacement, but some of the members here obviously have experiences with it as a bridge-to-transplant and I hope they'd like to share them.

Technically we know everything we need to know, but we do not know how it feels to have an LVAD. It is not easy to find experiences because they are so rarely used in germany - at least for a final solution and not as a bridge-to-transplant.

Although we're looking forward to the day the surgery starts, we're very afraid of the day. He's had his last bypass-op only half a year ago and lost a lot of weight. Yesterday's teeth-operation (4h of general anaesthetic) ended with a defibrillator usage to stop the atrial fibrillation.

I'm not sure, what I expect now. Hopefully someone can tell me what it's like living with an LVAD, how it feels to wake up after the surgery and how much recovery time he'd need.

Sorry for my english, I hope it's good enough.

Thanks!

 

[Lionheart]

Hi Trinity,
Welcome to the site. Sorry I have no experience with a LVAD but I wish your dad the best. Hopefully someone will come along and provide good advice. By the way, your English is excellent.

John

 

[Trinity]

Hi John,

thank you very much for your welcome, wishes and your very kind note about my English.

It always feels good to see that there are people who care about others in similar situations - even if they live on other continents.

Trinity

 

[dhudson]

Trinity, welcome to the forum. Like John I have no experience with LVAD. In fact I had to go look it up. My thoughts and prayers are with you both. Do not be embarassed about your english, it's better than mine.

 

[Greg a]

Welcome to the family

Welcome to the family

Hi Trinity .....Doug is not kidding your english phrasing IS BETTER THAN HIS .............just kidding Doug......LAVDs are becing more and more common as time goes on ......last year there was a feature on a young lady that walked down the aisle at her own wedding YES SHE GOT MARRIED while waiting and today is VERY ACTIVE here is a copy of a page from Facebook

In October of 2006, 18 year old Ally Smith, a college freshman, an avid athlete and picture of good health was, diagnosed with viral cardiomyopathy, a disease that weakness the heart and causes life threatening problems in many parts of the body.

Ally was referred the Texas Heart Institute. Her condition was severe. They used the latest advancements in treatments and technology to save her life. Ally, whose courage and poise are remarkable, is being sustained by a left ventricle assist device to allow her heart to rest and recover.

Ally is now 22 planning her wedding and getting ready to resume her education.


"im getting married june 26, 2010!!!! I have heart failure and was in the hospital for 101 days this summer. I almost died on june 24, 2009 (my fiances b-day) due to my heart pump failing. But I survived and am alive... I can't be upset I can't be angry cause god gave me another chance to live and find out with life is really like and to find out what glorous things he has in store for me and my future husband and I cannot wait to see what it is!!! GOD is ALWAYS awesome and ALWAYS good...im walking proof he's there for all to see who believe and don't believe!"~ally smith

here is a link to her FB page http://www.facebook.com/#!/pages/The-Bionic-Bride/119390961436414?sk=info

 

[Fundy]

Here's a link to 14 patient stories in short video on Thoratec's website.
http://www.thoratec.com/vad-trials-outcomes/patient-stories/index.aspx

 

[Trinity]

Thanks to all of you for the nice welcome. You put a big smile on my face. I'd probably use more american forums from now on, you are much friendlier than the germans . And it helps practicing my theoretical english .

I probably already read about Ally. She is one of the handful of people with an LVAD implanted more than one or two years. There is even one german guy who is already carrying the Heartmate I for five years now. But I guess they are both too busy to answer my questions .

After the surgery this is one of the biggest problems we are trying to deal with. There is no experience about the long-term usage. But we shouldn't complain, without that my dad would be dead within a few weeks.

@Fundy
Thanks about the link. I will read it soon.

To all of you: My father has had the choice between a transplantation and the LVAD. He is still young enough for getting a heart from someone else (in germany the organical age may not exceed 70). He has chosen the LVAD. The main reason was the waiting time he should have spent on the ICU and the recovery time, at least about three month all together. He said he couldn't cope with that, because he is already in hospital for half a year now. And the ICU wouldn't make anything easier. It is his decision and we're quite happy about that, but from time to time I think about the other way.

I know it is a very personal question but what would you chose?

 

[Trinity]

@Fundy
These stories are amazing! My father now "only" needs to survive the surgery.

 

[Lynlw]

Hi i'm sorry to hear about your father. Since most people who need valve replacements only usually dont end up in CHF or needing Transplants, There aren't many members here who have experience with LVADS. I know of 2 young guys who had them whose Mom were members, but neither is active here. One had his waiting for a transplant after having it few months his heart improved enough they were able to take him off it and just replace the valve and the other is on the waiting list for heart. but I don't know of any support groups off the top of my head, but you might have better luck if you can find suppot groups for people with Congestive heart failure, or I would probably contact the companies that make them and ask if they know of any.

 

[Trinity]

Too bad that none of the members with LVAD experiences is still active here. I guess one of them led me to this forum because of someone talking of them in a thread.

There was also a discussion that my father could get a valve replacement, because of a valve that is not closing correctly. But the doctors were not sure this would help, so they decided for the other way. This is why I thought the LVAD-topic is not so far away from yours.

Nevertheless, it helped me a lot to get the information from greg and fundy. And at least the big smile I mentioned above was worth registering here .

 

[Lynlw]

Hi I was reading an article about how important it can be for people with LVADs to have support groups and talk to others living with them in person or online if they dont live close to other LVAD [atients. , They had a link to an online community a doctors set up, so is probably pretty reliable as far as information.
Here is the link to the article, http://www.theheart.org/article/136...medium=email&utm_source=20120321_EN_Heartwire Its a little long so here is the link to the support site http://www.mylvad.com/
I PM'd Trinity with the Info, but thought i'd also put some of it here incase anyone else ever is looking for the same thing

 

[Jkm7]

Is that the device Dick Chaney has? He has lived with this for at least two years and maybe more.

 

[Lynlw]

Is that the device Dick Chaney has? He has lived with this for at least two years and maybe more.

Yes.It's what dick cheney ha. Its what Brian, whose Mom used to post here alot and Andrew, who is close in age to Justin whose mom Wendy also use to be a active member here has. Brian ended up not needing a transplant yet, and was able to have the LVAD removed and had a AVR
Andrew needed a new heart but wasnt a candidate for a transplant, because (I believe) his pulm pressures were too high, so they implanted the LVAD to give his own body a rest and hopefully improve to the point he could be listed for a new heart. it helped and he still has it (about a year now?) and is waiting for his transplant
http://www.valvereplacement.org/for...u-keep-Andrew-in-your-prayers&highlight=wendy

 

[Trinity]

Hi,

thanks for your PM and the article. It could be very usefull in a few days.

The surgery now starts in about an hour and might be over in 8 hours. The risk is very high because of the scarfs of the last two bypass surgerys. I "just" need to pass the day somehow...

 

[Trinity]

Everything goes according to plan. He is back on the ICU now, sleeps until tomorrow and then we`ll see more. But the worst is hopefully done. *sigh

 

[Greg~]

Trinity,
Sorry for getting to this post so late. I'm so happy your father made it through the surgery and is now in ICU. My prayers are with you and your father. Please try to get some rest, I'm sure you're exhausted.
Please keep us updated if yoiu have time

 

[Fundy]

Good to see he made it through surgery. Has anyone mentioned yet how long until he should be well enough to return home. I'm sure he must be looking forward to that if he has been in the hospital for half a year now.

 

[Trinity]

@Greg~
Of course we're very exhausted. But nevertheless the feeling, that everything could be fine in a few weeks is overwhelming now. I know, it is a bit soon now, but I know my dad - he has always been a fighter.

@Fundy
The surgeon said, that he might stand up for the first time 14 days after the surgery. So we'd expect to do the rehab in about six or so weeks.

They removed the tube for breathing (what's the correct medical word for that in english?) this morning. This is great! The last time this took 10 days.

Edit: I found it: "extubated" - nearly the same as in German.

 

[escargome]

Trinity,
I have been following your posts about your dad and am praying that everything continues to move in a forward direction and that he is home as soon as the doctor's deem it safe. I am certain that he will get through this. Prayers and good wishes are sent to you and your family. I resided in W. Berlin before the Wall came down and still have some truly fond memories. Take Care of Yourself.

 

[Trinity]

It seems as if all your prayers are helping a lot. The doctors are very surprised that he is recovering so good. My brother was there today and he told me that he now seems to be in a better condition than before the surgery. This is great and we never expected that so soon. Now we're facing the symptomatic transitory psychotic syndrome (I hope this is correct, thanks google!) but we are prepared for that since we already been through that in August after the bypass surgery.

@eascargome
It's been a while since you've been in Berlin. When the wall came down I was 12 and never been to the DDR/W-Berlin, so I cannot remember what it was like. But Berlin is definitely worth a visit now.