Sometimes in your world things just happen. There is nothing you can do about them, so why not just face the inevitable and walk on? Brave statement, indeed; but not so easy to do.
Realizing what might make your LVADer happy while in the hospital can be taxing. Personally, I finally remembered that Joe loves fish - not to eat, to watch - so I finally got smart and went and bought him a little beta to keep him company when visitors weren't there - or as a dialogue opener for the bazillions of medical personnel who interrupt your life on a continuous basis (do they really need to weigh you at 4 in the morning?). One of the administration nurses came up with the name VAD - how appropriate - so VAD became pretty famous on the rehab floor in the Heart/Lung Center.
All of our LVAD families have had to drastically change their lifestyles due to this medical wonder, most (no matter what the experience) are grateful to have been handed this new lease on life. It's a fine line you must walk to keep yourselves from being passive when it comes to what an LVAD has to offer. Sometimes people are so lulled into this numbing experience that they are almost afraid, or too proud, to step up and ask questions that could make a major difference in their care or peace of mind. It's okay to have an opinion, it's okay to speak up, and it's okay to disagree (if you have the facts to back you up).
When you first come on the scene you are made to feel like everyone is part of the "team" - but sometimes you have to remind the "experts" - that your recipient and you as wingman (caregiver) - are the most important part of that "team" - without you and others willing to take a chance on this medical marvel (and it is pioneering/experimental) there would be no "their part" of this team.
I have become a bit bolder since first coming on to the scene - and I must say that that is due to my own conscious and upbringing but also because of some pioneering women, who have come before me, that have stood up and are counted.
Since, the LVAD "explosion" - communication has gotten so much better between people who are involved with an LVAD world. There will be those who are "versed" in Thoratec, who I loving call "Thoratechys" they are soldiers who want the world to know what a perfect thing this can be and won't utter a negative word about things that happen, and there are those that I call "Warriors" who touch reality and try to make changes while still being grateful for theirs or their loved ones lives.
There will be those who will say, "I did it with no pain medications after the first or second day", and those who can't do it like that - we all carry our pain differently and some have great inner strength (or they're just plain crazy :) ) but remember that it doesn't make them better than anyone else - just makes them different. Nothing that helps you recover - your way - should make you feel less than anyone else or ashamed of how you did it. This goes for caregivers (wingmen) also. Everyone handles stress differently, and, quite frankly, I don't know how any of us makes it through without a trip to the local funny farm for ice baths and frontal lobotomies.
In the LVAD world we are all the same, either we carry an extra piece of machinery around to keep us walking, talking and loving - OR - we care for those who are walking around with that extra piece of machinery. I say, "Cheers to us all". We are mighty, we are powerful, we are at times sobbing pieces of sponge - but we are all one of the ultimate survival stories.
For our LVAD Warriors we are providing bands that portray us "LVAD Warriors"... to get yours send an email to tootsgran@gmail.com If you can, a dollar donation would be appreciated, if you can't you will still get your bracelets.
Realizing what might make your LVADer happy while in the hospital can be taxing. Personally, I finally remembered that Joe loves fish - not to eat, to watch - so I finally got smart and went and bought him a little beta to keep him company when visitors weren't there - or as a dialogue opener for the bazillions of medical personnel who interrupt your life on a continuous basis (do they really need to weigh you at 4 in the morning?). One of the administration nurses came up with the name VAD - how appropriate - so VAD became pretty famous on the rehab floor in the Heart/Lung Center. All of our LVAD families have had to drastically change their lifestyles due to this medical wonder, most (no matter what the experience) are grateful to have been handed this new lease on life. It's a fine line you must walk to keep yourselves from being passive when it comes to what an LVAD has to offer. Sometimes people are so lulled into this numbing experience that they are almost afraid, or too proud, to step up and ask questions that could make a major difference in their care or peace of mind. It's okay to have an opinion, it's okay to speak up, and it's okay to disagree (if you have the facts to back you up).
When you first come on the scene you are made to feel like everyone is part of the "team" - but sometimes you have to remind the "experts" - that your recipient and you as wingman (caregiver) - are the most important part of that "team" - without you and others willing to take a chance on this medical marvel (and it is pioneering/experimental) there would be no "their part" of this team.
I have become a bit bolder since first coming on to the scene - and I must say that that is due to my own conscious and upbringing but also because of some pioneering women, who have come before me, that have stood up and are counted.
Since, the LVAD "explosion" - communication has gotten so much better between people who are involved with an LVAD world. There will be those who are "versed" in Thoratec, who I loving call "Thoratechys" they are soldiers who want the world to know what a perfect thing this can be and won't utter a negative word about things that happen, and there are those that I call "Warriors" who touch reality and try to make changes while still being grateful for theirs or their loved ones lives.
There will be those who will say, "I did it with no pain medications after the first or second day", and those who can't do it like that - we all carry our pain differently and some have great inner strength (or they're just plain crazy :) ) but remember that it doesn't make them better than anyone else - just makes them different. Nothing that helps you recover - your way - should make you feel less than anyone else or ashamed of how you did it. This goes for caregivers (wingmen) also. Everyone handles stress differently, and, quite frankly, I don't know how any of us makes it through without a trip to the local funny farm for ice baths and frontal lobotomies.
In the LVAD world we are all the same, either we carry an extra piece of machinery around to keep us walking, talking and loving - OR - we care for those who are walking around with that extra piece of machinery. I say, "Cheers to us all". We are mighty, we are powerful, we are at times sobbing pieces of sponge - but we are all one of the ultimate survival stories.
