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 Its been a while since I wrote and said i had made it to transplant.Its now 20 months since my double lung transplant,In my blog "Im alive" I wrongly said july17,09 lol.My actual date was july 13,09 I got my call.AND....I also found out my donor had been male 18 years old.I had always felt it was a male.His mother wrote me a letter 6 months after the surgery.She wrote all the recipients of his organs.5 of us are alive because of his choice to be a donor.I have pictures of him I treasure,he lives on in me. His mother is a friend on one of the other social networks Im on.I just wanted to correct my other blog on the misinformation.I have indeed recieved an awesome gift and m entire life has changed.Its not easy street BUT I can live and do things and I try and make the most of every day.Live you life fully,take nothing for granted.Its small things we dont think about that are missed so bad when you can no longer do them.Some days walking down my hallway was HARD.I had a fear of hallways and stairs.I had horrible panic attacks from lack of oxygen.I almost died several times.LIVE GOOD,lAUGH HARD,LOVE BIG,DREAM BIGGER   you never know when little things may be taken from you and suddenly you realize how big they were.LOVE LOVE LOVE like tommorow may never come,one day it wont.LIVE BIG now   Susan aka dejavu777 

Tags: transplant,survival,lungs,

Hi all,Just wanted to drop a few lines to let all of you esp those that donated for me that i got my call on July17,09 @430 am.I was transplanted double lung by that night at Emory Hospital in Atlanta,Ga.
  It has been a long haul for me,Im just now really getting back to myself.My donor was a female,18 years old(not easy to think about)but I have this incredible gift of life because of her.
I thank all of you so very much for the help I received.God Bless and hugs.Susan aka dejavu777  

Im going out on a limb here and posting a blog based on emotion,which I do not usually do,however if I do not do it now, I will keep quiet about something that needs to be addressed.
IN writing this please realize I am not asking for pity or any such nonsense, only wondering what other people think or what they would do in the same situation.For those that do not know,I am waiting to be listed for a double lung transplant.Because of libel I will not mention the institution and in all reality it would not matter anyway because if an institution as prestigious as this would ask such of me,any of them would.I am down to 2 things that need to be done in order to be listed.One which is very simple,an eye exam,the other put off because of cost is dental.Without dental insurance the cost can be enormous.Over the last few months since my initial evaluation my health had spiraled down which happens a lot with lung diseases and I was hospitalised for 3 days to build me back up to finish my final things to be listed.I was so weak when hospitalised I could barely walk down my hallway.My pulmonary function was at 13%.After 3 days of iv fluids, antibiotics,and steroids I felt like a new woman ready to get it DONE.My pulmonary function after 2 weeks was at 19-20% which is great for me.My heart soared,I was on my way,I even conned the hospital out of my last hepatitus vaccination shot before being discharged!YOU do what you have to do...I WANT to live!The next week I went and had my last vaccine,a tetanus shot.Oh you would not beleive all the things you have to do and Im not going to bore you with them,but there is so much one has to go through to get listed.
So Im down to the dental which I knew would be costly.I had carefully put back all the money I could and was certain we had it.My lung doc says to have the dentist call him first so they can decide the best way to treat me because of my "condition"YUK.I hate being sick,Ive never been sick in my life until this,anyway,my dentist says"I have to refer you to an oral surgeon,I cant do this its too risky"I said "well ono big money?"he said "ah you can finance it" I say"what are we talking? thousands?mucho money?"I was told that there was a form I could submit to a certain foundation Im involved with.The foundation would inturn offer a list of their payments for services and he could agree or not.THIS is the problem.I am left with a social worker asking if I had any fundraising efforts done yet and how much money was in my account.OH yeah we have fundraisers planned,they have just been slow getting organized but thats not my problem.
My problem is this.....I need lungs and I have these people asking me if I have fundraised yet?
I said "I can barely walk down my hallway and your asking me why I have not fundraised?Basically what your saying is ........IF I have lots of greenbacks and I dont ,that I can have a life?She said "well no,every transplant person goes through this"No No thats not the truth"She is saying IF I have X amount of money in my account then I can get a dental clearance and get listed.What else could it be.NOw I ask YOU?
Rich people get the good treament, red carpet,all the way,stays in hospital until they are well enough to leave.People like me..well we are just like cattle>>>>>>>shoved thru the system,and god knows what kind of Rx's we are given that we know nothing of.Drugs bought in China and sold to legitimate Drug stores here,happens all the time,watch dateline,do a search ,KNOW what you might be ingesting.Im sick of the health system,too bad I need lungs huh?have you got any spare parts lying around?Owell got that out of my system.NEXT!

I jusst realized today that its amost a year since I made the decision to do the transplant.I had my first appointment with Emory in august last year.I cancelled that first one,got cold feet.
I finally went in september.What an amazing uplifting place it was,everyone was so positive.They started out taking enough blood to satisfy several hungry vampires LOL.Then I met one of the surgeons,wheww I didnt know they made them like that.My sis and my hubby were with me.She said I was lit up like a christmas tree when they walked in lol.Any woman my age knows what Im talking about.Yes I love my husband,you just forget sometimes after so many years that you still have IT.
Anyway this little guy made me feel so positive about it all.I asked lots of questions like do you get same sex organs.He said "does it matter?" Well I dont know,does it?What do you think?It might,docs dont know it all.Things go on at the cellular level they know little of, Ive read.I just dont want to come out swaggering around feeling all pumped up LOL.
Im writing I think because Im getting closer to being listed finally.I had a brief stay in the hospital recently to get built back up.I had gotten very run down,my pulmonary function had plummeted to 13%.My baseline is 19-20%.I am feeling so much better and have had 2 more vaccinations.I have a little dental work I have to do,an eye exam and voila!I get the beeper. I have to keep bags packed all the time,ready to run when I get the call.The window of time is kind of short between the time it is taken from the donor and then transplanted.They will take blood from the donor and mix with mine to see if there is a reaction,if not its a GO!
Im at the jumping off place so guess as a very good friend who went through the same thing said to me"You will either find your wings or find the ground"Now as I look at those words I wonder.
I think I will just sit back and ride,my creator has it all under control.