It looks like I am going to be getting on the Lung Transplant List....

[WCGreen]

Sooooooooooooo....

I thought it might be a good distraction for me, so that I wouldn't dwell too much about getting my chest cracked open and my lungs ripped out (I have grown attached to them) and replaced by some poor unfortunate but very humane individual's lungs, to write a blog about my experiences.

Since posting regularly on DU is the closest I have ever come to the so-called blogosphere (does everything really need to be sphered?), how would I go about doing this so that my musings and frustrated rantings would be available to others going through the transplant ordeal.

Signed, anxious but hopefull.

[Heidi]

1. You have a DU journal and presumably an audience with it.

Why not just use that? :hi:

[EFerrari]

8. That's a great suggestion.

And best wishes to you WCGreen. Journaling sounds like a really good idea. :hi:

[WCGreen]

12. I already have one and I would like to keep them seperate...

I was wondering if there was a way to have a journal split in two so that one could be about the transplant and the other could be about all the other crap I have to get off my chest... (pun intended)

[Heidi]

23. Chris, you know I'm holding every good thought for your health.

:hug:

Ask the Admins directly by email or PM about the possibility of splitting your journals, but my own opinion is that your health situation is very much part of your life, part of what we in your community know about you, and your willingness to share your health experiences is a huge part of what it is to be progressive -- not a separate part of being progressive. You're a whole person and you're already embraced by a community/audience, so leveraging that to share your observations seems natural. Unless you have another network that could better encourage you or relate to your experiences...building a new network is very, very difficult. Just my thoughts...

[Subdivisions]

37. I agree. You shouldn't make it a separate part of your writings. If you were

to have to go the way of Blogger, et. al., no one would see it. However, DU is very prominent in the search realm. Hell, I find DU links at Google while searching for stuff related to my business. Your posts would be indexed almost immediately and will begin being found withing hours of your posting. If you don't want your journal clogged up with other stuff during this period, just post un-related stuff to the main boards and not to your journal. Staying with DU journals is the fastest way to gain an audience for your impending experience, which I think would be a very valuable resources for the rest of us, and especially for those facing similar circumstances.

All my best to you, WCGreen.

[LiberalLoner]

2. I wish you speedy healing and long and happy life.

[tblue37]

20. blogspot.com or blogger.com. nt

[Cleita]

3. Best of luck to you and I will keep you in my thoughts and prayers.

It's a brave thing you are doing. Keep us informed with your progress.

[blm]

4. (( )) to you, old Cleveland buddy.

.

[WCGreen]

6. It's over at the clinic...

Damn, that place is HUGE!

[Doremus]

50. You're in great hands.

And, yes, that Clinic campus is like a 50-mile maze on steroids. But you couldn't be in better hands.

Very best wishes for an expeditious recovery from another fellow Clevelander.

[asjr]

5. Happy Trails to You!

[Maru Kitteh]

7. I'm sorry you need to be on the list but happy for you that you made it on?

Does that make any sense?


The need is great people! Sign your organ donor card and make sure your wishes are known!


http://www.donatelife.net/

[wildflower]

9. Click on "Journals" above (between "Lobby" and "My DU")

Then, click "Create Journal" and you'll be able to post to the journal, and DU members can add your journal to their lists.

An orange icon that says "Journal" will also show up in your DU posts so people can click on it and go read your posts.

And (someone may have to correct me on this) I think journal posts here can also be promoted elsewhere on the Web.

Updated to add link to DU guide to using journals:

http://www.democraticunderground.com/forums/journals.html

[WCGreen]

10. Oh I have one already....

I was wanting to get to people who may be looking for someone who is going through what they are going through....

[mopinko]

11. i think the big place for this now is wordpress

although there are a lot of sites like that nowdays.

best of luck to you. i presume that although you are attached to those lungs, they are not doing much for you. i suspect you will get attached to the new ones pretty quickly.
don't forget to crosspost to your du journal. i suggest the chronic illness forum as the place to start those posts. or health, if you want a lot of 17th century medical advice.

[WCGreen]

17. Mrs. WCGreen has a blog over there.

I think I'm gonna try to get one up and running.

I didn't want to post here because it could get tedious. I did post almost everyday when I was in the hospital back in October and november and it did me a world of good...

I've seen some of the transplant blogs. I think I can do something a little different, give more information. I think most of these blogs are more personal than informative.

[Bluebear]

13. May your new lungs be showroom new & extend to you many years of happiness!

[CaliforniaPeggy]

14. What a great idea!

I think this will provide you with an outlet, and a place for feedback.

Not only will you get to rant and muse, but perhaps other folks who have already been down that path might contribute to your blog...

Thus giving you some much-needed peace of mind.

Go for it!

Let's hear it for more hopefulness, and much less anxiety...


:hug:

[cliffordu]

15. Best of luck to you in this -

Funny how politics fade into background noise when someone we (virtually) know gets something serious.

Keep us apprised, for sure.

[WCGreen]

18. The politics are real important to me...

Especially now that I am winding my way through the health care labyrinth...

[hlthe2b]

16. Sounds like a phenomenal way to both educate and cope

with the experience....I have no independent blogging experience, but I'm sure someone will provide your answers shortly. Best wishes, WCG... We'll look forward to your recovery and documentation of your experiences during that time.

[blueworld]

19. God bless ya, WCGreen

I'll be looking for your posts & sending you my prayers. :hi:

[road2000]

21. For people going through major health issues,

you may want to try www.caringbridge.org. A friend of mine used it while coping with breast cancer surgery, chemo and its aftermath.

Good wishes to you.

[tango-tee]

22. My very best wishes go out to you.

Without much ado - good, healing vibes, dear friend...!

[lunatica]

24. That's a great idea

I wish you the best of experiences and speedy health when it happens for you.

[devilgrrl]

25. You are in my thoughts.

:hug:

[Warpy]

26. I have a cousin going through the workup now

so you're not alone out there. That combination of alpha-1 antitrypsin deficiency and smoking is lethal.

They'll only transplant one lung, so that you'll survive (barely) if you go into rejection. However, yeah, you do get your chest chopped open and your ribs cranked apart to do it. You'll also have to take some ugly drugs for the rest of your life to keep it. However, you'll be able to get up a flight of stairs without stopping three times to gasp if it works.

Transplants are great for people who can get them. I know, I'm reading this page through somebody else's cornea.

[WCGreen]

29. i have to get both because the disease I have will just invade the new

lung if one of the old ones is left in...

It's all or nothing.

[Warpy]

36. I see. Well, they do them and they also do heart/lung transplants

and when they take, they can buy the recipients some good time.

They don't do lungs here in NM, but I know a few heart recipients who are 20 years out and doing well.

It's not an easy thing to face. That's why they do so much psychological counseling before you do it.

I hope the best for you and my cousin. I'd like to keep you both around and in better health.

[mitchtv]

27. I have been through the transplant thing twice(liver)

once in 93 , again in in 96. All best wishes. any quetions?

[WCGreen]

28. More about the costs and what happens after the transplant...

I'm on disability already and I wonder if after the transplant would i still be on disability?

[mitchtv]

33. Most likely (If you want)

youw are essentially trading a terminal condition for a chronic one. I stayed out, But all I had to look foward too was AT&T's residential billing dept to return to.I had an hmo so I paid basically nothing for the surgery( after the first HMO said no) Luckily I was Union , and was alive for open enrollment

[WCGreen]

41. that's always a good thing to know...

[Hekate]

30. That's good news. All the best to you.

:hug:

[goclark]

31. We are in your corner

[emilyg]

32. To life!

[WCGreen]

39. Thank you...

That is the best.

[City Lights]

34. Sorry you're having to go through this, MCGreen, but best of luck to you!

:hug:

I look forward to reading about your experiences.

[w8liftinglady]

35. Best of luck to you-I worked a lot withlung transplant patients post=op

if you have questions...First word of advice-get to know your transplant meds VERY well.

[WCGreen]

38. I'm all ready on a whole mess of meds...

And they jut went over the possibility of what i will be taking...

My current condition already makes me susceptible to infection so i am already on prophylactic anti-biotics.

Still, I am also worried about what happens insurance wise. I just got the news on Thursday and everything looks okay now but since the employment market is still dicey at best, I may have to look at some options such as getting divorce and going on medicare before the operation.

It's ridiculous that I even have to consider this option.

[Ms. Toad]

54. Make sure you consult with a Medicare expert

before you do anything that drastic. There are all sorts of rules in place to try to make sure no one is deliberately "gaming" the system - so it may not solve the insurance problems.

It really stinks that you even have to think about such things when you should be concentrating on preparing for this transplant and healing.

[Cetacea]

40. .

[tavalon]

42. A nurse I work with had a double lung transplant

For all the difficulties she's had in life, she's very healthy now. I hope your lungs come swiftly and easily, my friend.

[WCGreen]

43. That's good news...

[tavalon]

44. That's why I mentioned it

I think it has to be scary to be facing that.

[applegrove]

45. Vibes

[Richard Steele]

46. I don't even know what the heck to say about that, WC....

Should I say "congratulations" for getting on the list,
or "Condolences" for needing to be on it?

Perhaps I should just cover all bases by saying
that I wish you and yours the best of luck? :shrug:

[WCGreen]

47. Luck for me and skill for the surgeons...

the funny thing is I quit smoking back in 1985...

And thank you for your thoughts...

[Richard Steele]

49. Yes indeed- I wish LUCK for you and skill for your surgeons,

I do indeed wish for those things. :hug:

[The Magistrate]

48. Jesus, Sir, That Is One Helluva Note

Best of luck to you.

[WCGreen]

52. It's been hanging there like the sword of Damocles for 15 years or so...

And even though I knew it would someday fall, the chill that went through me when the good doctor told me I was at the window and needed to be tested to get on the waiting list for a new set of lungs...

First, the idea that someone has to die for me to live is a pretty daunting thing in and of itself, hard to grasp the for-thought of someone to plan of giving themselves to strangers...

Second, the whole idea of having to depend on drugs for life...

Anyway, I just have had a weird three, four days as it all sank, still sinking, in...

[panzerfaust]

57. Are you an organ doner?

I am just curious, not being judgmental

[Ms. Toad]

51. Most hospitals are associated with

CarePages.com or Caringbridge.org - which are designed for medical blogging (and maybe some others I've forgotten - and some hospitals have private sites). I think you could set one up and link to here pretty easily.

Good luck. The daughter of my neighbor across the street got a lung transplant last year (and is doing very well), and my daughter will ultimately need a liver transplant. It isn't easy to think about losing an essential body part (or about what has to happen for you to get a replacement).

After seeing a later post, the CCF provides its patients with access to TheStatus.com

(Just spent some quality time there, myself, losing a body part that didn't need to be replaced. Word to the wise - make sure you address pain control very specifically up front - their policy is great, their implementation of it was not so great in my case!)

[arthritisR_US]

53. wow, that's really heavy stuff your having to go through! My best thoughts

are with you and post away about it all. I think writing about what you are going through would be cathartic for you, and enlightening for many of us. :hug:

[roguevalley]

55. WCGreen, I am totally glad for you. My cousin needed the same

thing in the early 1960's but they didn't have it then. Times have changed and you will be dancing before you know it. I am glad for you, honey. Come here and let it out anytime you need us. We will be here.

[WCGreen]

56. The technology is getting better each and every month is seems...

They are now able to deliver some of the immune suppression drugs through inhalation ant that means it is concentrated where it is needed...

[BlancheSplanchnik]

58. I read through your every post in t his thread

and I just wanted to say, I'll be truly thinking of you, wishing you the best!

[WCGreen]

59. I've known for a while...

I really was toying with the idea of not telling anyone but then again I really wanted the input of DU'ers about blogging, to see if it was a good idea...

I think I am going to do two blogs, one here and one on the WordPress...

I want to muse about my experience with the health care system on DU and not talk about politics on Wordpress. I have relatives that are really red and I don't want to offend them with my proclivity toward hyper liberal political stances.

[BlancheSplanchnik]

61. I don't really have any family to worry about offending

though there are some folks at work -- we all tacitly agree to be apolitical in public there.....

Drives me nuts to have to be silent about the truth (Progressivism IS the truth, in my not particularly humble opinion)...if I had raging red family, whew! I don't know what I'd do (well, I'd tear my hair out, I know I'd do that )


but sometimes, I think I need to just get away from thinking politically! Just for a breather......



breather! *snort*!!! ;)



:D

[tpsbmam]

60. Best wishes to you -- once transplanted, I hope you live a life fuller than

you could have imagined. There's nowhere on earth I'd rather be for a serious surgery than the Cleveland Clinic -- you're in excellent hands.

:hug:

[WCGreen]

62. So far only the Social Worker has rubbed me the wrong way...

But that was probably because she was the last person I saw after two straight days of being poked, prodded and questioned.