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Adsos Letter

(19,459 posts)
Wed May 11, 2016, 10:10 PM May 2016

A note of thanks to those who commented on my last photo, as well as those who wished my family well

Last edited Sat May 14, 2016, 12:07 AM - Edit history (1)

As fizzgig noted in another post, I wish there were a "reply all" function so that I could be sure each of you are thanked. In any case, I send my thanks to all of you.

My son-in-law is home, with a hospital bed in his living room. His heart failure is apparently the result of a genetic condition, and his heart is damaged enough that he will be going to Cedars-Sinai for a work up, and preparation for a heart transplant. The docs tell us he should be able to return to work, at least part-time, once he has sheds some more fluids, and feels better. I find this incredibly hard to believe, having seen how close to death he was, but the docs assure us it's true. He and my daughter are both physicians, and they also assure me this is true. If everything goes as well as hoped with the transplant, he should be able to return to full-time work. The idea of transplanting hearts is still amazing to me, but his dad has lived and worked with one for 15 years, and is doing quite well. So, there is that.

Because this has been determined to be a genetic condition, our 6-month old granddaughter is in the process for a work up to determine whether or not she inherited the gene for this, a 50/50 chance. If it is determined that she carries it, she will begin seeing a cardiologist when she turns one, and will continue with yearly EKG's to monitor whether or not her heart is experiencing any enlargement. We hope for the best, obviously.

So, thank you all again. Came home for a bit to attend to some things, but will be heading back down there again soon.

The first four of these were taken over in the Anza-Borrego area. The last one was taken from the car on I-5, somewhere around Pyramid Lake, California, heading over the mountains from LA toward Bakersfield.

[url=https://flic.kr/p/FX5JKH][img][/img][/url]

[url=https://flic.kr/p/GSvJQB][img][/img][/url]

[url=https://flic.kr/p/GLxznB][img][/img][/url]

[url=https://flic.kr/p/FX1aV3][img][/img][/url]


[url=https://flic.kr/p/GQ5XF8][img][/img][/url]

Health and long life to all of you.

23 replies = new reply since forum marked as read
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A note of thanks to those who commented on my last photo, as well as those who wished my family well (Original Post) Adsos Letter May 2016 OP
Great news, Adsos Letter. elleng May 2016 #1
Thanks, ellen. Adsos Letter May 2016 #2
please be careful about Valley Fever once he is on anti rejection drugs Baobab May 2016 #22
I have a relative who got a heart transplant at that very hospital. MADem May 2016 #3
My son-in-law will also have a pacemaker implanted as soon as the fluid situation is resolved Adsos Letter May 2016 #4
They know what they are doing at CS. I was shocked at how fast it went down, too. MADem May 2016 #5
Thank you for all of the info, MADem. Adsos Letter May 2016 #18
Support system is key--when he's through the forest and out of the woods, I hope you will update us. MADem May 2016 #20
SO glad to hear your update, my dear Adsos Letter! CaliforniaPeggy May 2016 #6
Thanks, Peggy. Adsos Letter May 2016 #12
So good to hear from you! Wishing you and yours all the best! Solly Mack May 2016 #7
Thanks, Solly Mack. Adsos Letter May 2016 #13
It was so nice to come in and find CC May 2016 #8
Thanks, CC. Adsos Letter May 2016 #14
Tell your daughter CC May 2016 #21
Thanks for the update and more photos. NV Whino May 2016 #9
Thanks, NV Whino. Adsos Letter May 2016 #15
Those sculptures are wonderful NV Whino May 2016 #19
I'm sorry, Adsos. Blue_In_AK May 2016 #10
Thanks, Blue. Adsos Letter May 2016 #16
Good to hear from you, Adsos Letter. mnhtnbb May 2016 #11
Thanks, mnhtnbb. Adsos Letter May 2016 #17
Good news and more stunning photos! Agschmid May 2016 #23

Baobab

(4,667 posts)
22. please be careful about Valley Fever once he is on anti rejection drugs
Sat May 14, 2016, 07:07 PM
May 2016

it is endemic to that area. Stay away from high dust situations.

MADem

(135,425 posts)
3. I have a relative who got a heart transplant at that very hospital.
Wed May 11, 2016, 10:22 PM
May 2016

It's been a long road, but she's doing well.

You'd think that with all the hospitals in New England she'd have had it here, but it turns out that there's way too much competition on this coast. She had a much better shot at getting a heart by moving out west, so that's what she did--she moved into temporary quarters and waited. She was in dire need so she moved up the list pretty quick.

The entire evolution wasn't without a bit of drama, but the trajectory has been astoundingly positive--it's just INCREDIBLE what they can do nowadays. She has a bunch of kids, and they need their mother, so it's just all good, you know?

My relative had a pacemaker as a stopgap -- it was implanted under her skin, felt like a small cellphone battery or something!

Adsos Letter

(19,459 posts)
4. My son-in-law will also have a pacemaker implanted as soon as the fluid situation is resolved
Wed May 11, 2016, 10:32 PM
May 2016

He was on Lasix, but had some issues with his kidneys. They have gotten that under control, so he is continuing to shed the excess fluids.

I am encouraged by your relative's story, MADem, and I thank you for sharing it. We think he will move up the list pretty quickly also, especially because of his younger age. We hope for a very positive outcome.

MADem

(135,425 posts)
5. They know what they are doing at CS. I was shocked at how fast it went down, too.
Wed May 11, 2016, 11:24 PM
May 2016

We sent her out there and figured it would be a long wait (they said it could be as long as six months), but it was around a month. And she was up and on her pins, going for walks OUTSIDE wearing a mask, quickly.

Her husband is an absolute rock, too--whoever is helping your SIL through this needs to be that set of 2nd eyes/ears to write everything down that the doc says, and be ready to play chief cook and bottle washer. Helpers are a good thing.

I don't know how his insurance is, but I do know there are a lot of oddball expenses--it can get kind of pricey if there are co-pays for this or that or deductibles--the staff can tell you what the out of pocket situation might look like, and there's also airfare for family and housing to consider, as well as expenditures for the follow up visits (they do biopsies--sounds worse than it actually is, we're talking a few cells to test for rejection regularly and they adjust medications as needed).

If you're from outta Cedars town, there's temp housing that will be needed at one of those furnished corporate places (much better than a hotel, really--and cheaper). He will need to be close to the hospital for awhile after the operation while they check to make sure everything is OK. I would suggest that you slap up a GO FUND ME page and put all of the friends and relatives on SHAMELESS beg-blast--gather up a few grand to pay for the things that aren't included in your insurance, like co-pays, deductibles, sudries, air fares and odds and ends. Family and friends raised a massive amount of cash by doing this--people DO want to help, they don't know how, or what to say or do, but ten, twenty, a hundred is a way of saying "I give a crap about you," so by all means, don't be shy. Those donations from relatives, friends, acquaintances, and friends-of-friends do add up and the money will go for a good cause. If there's anything left over after all is said and done, your family can pay it forward to someone else in need. Also there will be follow up appointments and a little fund can help if there's transport or more co-pays/deductibles (which can happen if/when you cross into a new year) involved.

My relative does her follow ups here in Boston, she doesn't go back to the west coast. It's been over a year, now, and she's doing really well.

Also, there is a website called "CARING BRIDGE" where you can set up a page where relatives and friends can get updates on your loved one. You write one post and it's sent out to all the email addresses in your universe. Nice way to let those who donated to the cause or care about your loved one kept in the loop.

I suppose you can do this on the facebook too, but CB is kind of "single purpose." The patient writes a bio, slaps up a few pictures if they want, and provides updates (either themselves or through a surrogate) -- it's very clean and easy to use. They do beg for money on the site for their own maintenance but it's discreet and you don't have to donate to support the site to join.

There is a MASSIVE universe of people living--and living WELL--with heart transplants. I've got to say, I was amazed back in the eighties when the Jarvik heart (and that brave patient Barney Clark) hit the news, and I just can't believe how far we've come from there in this regard. It's really quite remarkable.

It's not a simple thing, but your SIL has every reason to be very hopeful and positive. And speaking of positive, ATTITUDE plays a huge role in recovery. It's a good thing to have people around him who lift him up, if you know what I mean.

Sorry to throw so much at you in such a disjointed way, but I hope some of this info helps. I think the whole concept of "THE UNKNOWN" and "Oh shit--this is a SCARY BIG PROCEDURE" can overwhelm people--it's good to know that others have come through and done well.

My relative has a small scar and she is very PROUD of it--it doesn't detract from her appearance in the slightest--it's a thing of beauty, because she's still here to sport it!

Adsos Letter

(19,459 posts)
18. Thank you for all of the info, MADem.
Fri May 13, 2016, 09:01 PM
May 2016

Costs, fortunately, are not at issue, and we are so thankful for that. Both have excellent coverage, something I wish all people had.

There are many hands pitching in, and his parents, and my wife and I, are in it for the long haul. We are fortunate enough to be in a position to be available for extended help.

I think everyone's spirits are improving, now that the initial shock has passed. We have a road ahead of us.

Again, thank you so much for your response.

MADem

(135,425 posts)
20. Support system is key--when he's through the forest and out of the woods, I hope you will update us.
Fri May 13, 2016, 09:39 PM
May 2016

Please know that I will keep you and your family in my thoughts in the weeks and months ahead.

CaliforniaPeggy

(149,517 posts)
6. SO glad to hear your update, my dear Adsos Letter!
Thu May 12, 2016, 01:17 AM
May 2016

I am relieved that this is genetic and that they can fix it. Yes, transplants have come a very long way from the earliest ones.

All my good thoughts to you and your son-in-law and the whole family!

LOVE the photos too!

Adsos Letter

(19,459 posts)
12. Thanks, Peggy.
Fri May 13, 2016, 08:24 PM
May 2016

We are taking a very positive approach, as are the kids. Both are doctors, and they have a much better understanding of what's involved than I do.

Solly Mack

(90,758 posts)
7. So good to hear from you! Wishing you and yours all the best!
Thu May 12, 2016, 01:40 AM
May 2016


Please let us know how everyone is doing as time goes by - you're important to us.

Lovely photos!

Adsos Letter

(19,459 posts)
13. Thanks, Solly Mack.
Fri May 13, 2016, 08:26 PM
May 2016

I'll stay in touch, and continue to read the photo group. Probably just won't have a lot of time for photography (and I finally just had the sensor cleaned on the camera).

Loved your hummingbird photo!

CC

(8,039 posts)
8. It was so nice to come in and find
Thu May 12, 2016, 03:12 AM
May 2016

fantastic news along with cool photos. So happy to know your SIL is doing better and there is a plan and way to help make sure he will around to help raise his daughter. Hope she does not have this genetic trait but there is a plus to knowing to check for it in the long run.

I love photos 1 & 3 but need to hear the story behind 3.

Adsos Letter

(19,459 posts)
14. Thanks, CC.
Reply to CC (Reply #8)
Fri May 13, 2016, 08:37 PM
May 2016

You have been very encouraging through all of this. The kids are both doctors, so they have a much better understanding of what is involved than I do. In fact, one of the things that irritated my daughter (an Ophthalmologist) so much was that my SIL (geriatric specialist) waited so long to be seen. She suspected what was happening, and he did too (especially given that his dad has been living with a transplant for 15 years now) but he just wasn't ready to face it. He was forced to, in the end.

We are very grateful for good health coverage for the both of them.

Image #3 was taken over at Borrego Springs, California, where there is a very large display of metal sculpture scattered throughout the desert. Here is a link to a site explaining what it's all about (I apologize for the pop-ups there) : http://www.desertusa.com/borrego/bs-art.html

And, another image (the ones at the above site are much better:

[url=https://flic.kr/p/GPfDEb][img][/img][/url]

CC

(8,039 posts)
21. Tell your daughter
Sat May 14, 2016, 01:47 AM
May 2016

not to be too mad at SIL. His waiting is such a normal human thing to do doctor or not. There is going to be ups & downs for him and wonder if it isn't harder in some ways when you are a doctor yourself. Rumor has it they don't make the best patients. You getting to be there and help has to do wonders for all of you. Now off to read. TY



Went and read about Borrego Springs sculptures and looking at their photos I have to say I like your black & whites better. Specially the serpent.

Adsos Letter

(19,459 posts)
15. Thanks, NV Whino.
Fri May 13, 2016, 08:39 PM
May 2016

I'm starting to think we'll never make that trip to the railroad museum.

Here is a link to an article discussing the sculptures at Borrego Springs: http://www.desertusa.com/borrego/bs-art.html

NV Whino

(20,886 posts)
19. Those sculptures are wonderful
Fri May 13, 2016, 09:25 PM
May 2016

Well, I haven't been there since opening day. I think I can wait a little longer.

mnhtnbb

(31,373 posts)
11. Good to hear from you, Adsos Letter.
Thu May 12, 2016, 08:03 AM
May 2016

Scary stuff, indeed, but sounds like there is a good plan and lots of positive energy coming
from the docs.

Nice photos! What is the story on that monster?!?



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