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Dawn C. VAD Coordinator

Tell us what you use to transport your equipment....

On the Recipient Support Group this month, we had a great discussion about how you are carrying, moving and, transporting your equipment. We want to see pictures.....

So, upload your pics, tell us where you got it, tell us how you improved it. Share your experience with the rest of the MyLVAD world!

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Lota S.

I will have my first consultation for a LVAD on tuesday the 23rd, 2013. I have so many questions. I am 72 years old and received my first defibulator in 1993. I have had a duo pacer/defib for about 12 years. I got a BVEE, extra line about 7-8 years ago. The doctor says my ef is at 13% and the left side just isn't doing much. My kids are worried that I may be to old for this surgery. Please give me some me some hope for them. How old is the oldest person to have it done--how long can I expect it to last? I also have questions about recharging device, how to transport and etc. Thank you so much for any help. Lota

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Steve V.

I am a 56 year old LVAD patient

I have met a 75 and 80 year old that had the LVAD placed recently they are both doing very well - in fact both recovered faster than I did

You will be going thru a very challenging surgery and recovery -- but after a month or two you and your family will be so happy that you made the LVAD decision

One important factor in your recovery is protein intake to help you reduce you fluid retention - I strongly suggest MUSCLE MILK it has the highest protein of any drink I found -- for a short period of time you will not feel like eating but you will need protein

As for transporting your equipment --

Day to Day just requires a bag for spare batteries and the spare controler this will be provided to you - I found a smaller more stylish bag that I am now using

All your chargers and power module stay at your bed side unless you are traveling away from home a couple of hours or over night

I suitcase with 4 wheels and that is the largest allowed for carry on will handle all you stuff -- I bought one at walmart for $60 -- I can get you the exact sizes if you need them

The LVAD not only saved my life but it gave me my quality of life back --

Stay strong and patient and thrust your LVAD team - you will be a new man

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Michael G.

I wear the controller around my waist. The batteries I wear in the thigh pad area of an Under Armour football girdle, works quite well. You can wear them inside out for easier battery changes, but they hold firmer when you wear them as intended. I'm able to use the bathroom with these, just need to be a little careful. This beats wearing them hanging on a belt, vest, or a 511 Tactical conceal carry shirt, especially in hot weather. Now only if they will upgrade my Heartmate II controller to the new pocket model.

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Anonymous

You are not to old for an LVAD for destination therapy. We have implanted a patient that was 78 (did very well), and in the trial study the oldest implant age was I believe 80 or 82.

As far as the how long the device lasts, the HM2 is very durable and is a reason why it is approved for destination therapy. There are patients that have been on the device 5-6+ years.

Hope this helps.

Jeff

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Holly H.

I hope your consultation went well. Your story sounds like my fathers. He just had the lvad implant on August 3rd 2013 . So far he has been doing really well he is 75 years old . He had been considering this since march 2013 he had been sick with pneumonia twice in winter 2013 recovered got stronger and was approved for surgery for lvad by team at Stanford taking it one day at a time i. It was very helpful to him when he got call from a local lvad patient who received device about 2 years ago. Get as much info as possible and stay positive

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Anonymous

My husbands e f was 10 when he was recommended to be evaluated for LVAD. He is 66 yrs old and was sooo very weak when we started. He had the procedure done on June 17th, 2013 and has done remarkably well. He looks healthy again- has regained muscles he had lost and has filled back out. His overall health has improved 100%. Quality of life is good also. He has mowed the yard and weedeated some already. What do you have to lose? And everything to gain. Your children should want to keep you around awhile longer.I would recommend you do it.

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Stephen C.

As far as wearing of the System Controller and batteries, I use a vest from the website boscovadvests.com. Once in a while, I wear the mesh vest that Thoratec provides. When we travel, we use a roll carry-on bag for the power module and another bag for the battery charger. Since June 3, 2011, we have travelled and continue to travel as much as we can. We have learned how to pack the equipment pretty quickly, and really no major problems with the TSA.

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Carol G.

Lota, I am a 70 year old former Wichita/Valley Center resident that now lives south of Topeka in the summer and winters in Arizona. I received my LVAD on April 16, 2013 at Saint Luke's in Kansas City. I am so thankful for the LVAD doctors, nurses and staff at that hospital. They are spectacular. I feel very fortunate to have had this procedure. Being 4 months out, my energy level and my overall health has improved 100%. I won't sugar coat the fact that the first three of those months were not the best. But on the 3rd month I was walking a mile with no problems. Yes, there is quite an adjustment to make in your life style but it will just come natural and you learn to cope with what you have to do to continue to live a much better and productive life. I do not regret having my Heart Mate II. It has been my life saver.

Good Luck and do what the LVAD team tells you.

Carol70

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Thomas J.

I purchased a small roll around suitcase from a yard sale for $5.00. works great. all equipment fits in it and looks like another piece of luggage. roll it into your hotel room open it up and plug everything in.