Transplant time :-(

Thinking of you today - please let us know how you got on

Hi Stacie,hope you got on well today,and they managed to answer all your questions and worries you may have had,thinking of you take care love Debbie xx

hugs and kisses

Hey Guys,

Well I got to the hospital about 1:30pm and I didn't have to wait or anything they were there already just ready for me which was realy refreshing but it won't be something I will get used to LOL.

they got down to business and basically they don't want to do a Heart and lung transplant anymore as they feel I'm too young for it and if it didn't work then basically that would be it for me, but they want to do the double lung transplant instead, because most of the damage is on my lungs and although I have heart problems (I have 3 holes in my heart) by removing these lungs, it would then relieve the pressure these ones are putting on my heart and I would be alot better than I am, also the survival rate is alot higher at 85%. It would also mean I would no longer have PUlmonary Hypertension and I would only have the heart problems I was born with, which I was living with just fine till the whole PH thing happened.

They are doing tonnes of tests now to make sure my immune system is up to it and all my other organs are tip top. they need to do it now because my O2 sats are pulmmeting, I was only there 4 weeks ago and my O2 sats have fallen by another 5% which is apprently bad.

The only thing that freaked me out was that I would wake up being attached to a respirator which would be helping me breath till I could breath on my own, so this would mean having tubes coming out of my chest, kinda freaked me out but other than that everything else seemed fine.

Little bit scared about it, but I reckon thats probably normal, the woman that was ther from Harefield was really nice and seemed really positive although I think she thought I'd be more freaked out because she commented several times about how upbeat I was, and I just told her this was an enevitable stage that was always gona happen and I've known that since I was about 4 years old so I've had about 16 years to get my head around it, and then she commented on how healthy I look and I just said that I was lucky :-D

So thats how my day went

Stacie :-D

Life is worth the fight :o)

Wishing you all the luck in the world

and so pleased your so positive

Keep smiling Rita xxxx

To receive a smile give one away

Stacie, you sound so positive and so brave, especially for some who is quite young. The very best of luck to you. Keep us posted.

Stacie i wouldnt worry too much about your SATS mine go anywhere between 70% and 84% . Take care
Karen x

Author	Message Topic Search Topic Options Post Reply Create New Topic Printable Version Translate Topic
kenny R Members Profile Send Private Message Find Members Posts Add to Buddy List Member Joined: 18 Jun 2011 Location: edinburgh Points: 8	Post Options Post Reply Quote kenny R Thanks(0) Quote Reply Posted: 05 Jul 2011 at 7:11am
	good luck stacie wish you all the best kenny xx
	kenny

Susanna Members Profile Send Private Message Find Members Posts Add to Buddy List Member Joined: 25 Oct 2010 Location: Herefordshire Points: 108	Post Options Post Reply Quote Susanna Thanks(0) Quote Reply Posted: 05 Jul 2011 at 3:05pm
	Thinking of you today - please let us know how you got on

Miriam Members Profile Send Private Message Find Members Posts Add to Buddy List Member Joined: 25 Oct 2010 Points: 240	Post Options Post Reply Quote Miriam Thanks(0) Quote Reply Posted: 05 Jul 2011 at 4:31pm
	Hope it went well today and that you won't have long to wait.
	Live, Love, Laugh!

debsie Members Profile Send Private Message Find Members Posts Add to Buddy List Member Joined: 29 Oct 2010 Location: West Midlands Points: 117	Post Options Post Reply Quote debsie Thanks(0) Quote Reply Posted: 05 Jul 2011 at 6:01pm
	Hi Stacie,hope you got on well today,and they managed to answer all your questions and worries you may have had,thinking of you take care love Debbie xx
	hugs and kisses

Kathryn Members Profile Send Private Message Find Members Posts Add to Buddy List Member Joined: 26 Oct 2010 Location: UK Points: 145	Post Options Post Reply Quote Kathryn Thanks(0) Quote Reply Posted: 05 Jul 2011 at 9:12pm
	Stacie, all the very best tomorrow, let us know how you get on. Kathx

staciep90 Members Profile Send Private Message Find Members Posts Visit Members Homepage Add to Buddy List Member Joined: 22 Apr 2011 Location: Swindon Points: 171	Post Options Post Reply Quote staciep90 Thanks(0) Quote Reply Posted: 05 Jul 2011 at 10:56pm
	Hey Guys, Well I got to the hospital about 1:30pm and I didn't have to wait or anything they were there already just ready for me which was realy refreshing but it won't be something I will get used to LOL. they got down to business and basically they don't want to do a Heart and lung transplant anymore as they feel I'm too young for it and if it didn't work then basically that would be it for me, but they want to do the double lung transplant instead, because most of the damage is on my lungs and although I have heart problems (I have 3 holes in my heart) by removing these lungs, it would then relieve the pressure these ones are putting on my heart and I would be alot better than I am, also the survival rate is alot higher at 85%. It would also mean I would no longer have PUlmonary Hypertension and I would only have the heart problems I was born with, which I was living with just fine till the whole PH thing happened. They are doing tonnes of tests now to make sure my immune system is up to it and all my other organs are tip top. they need to do it now because my O2 sats are pulmmeting, I was only there 4 weeks ago and my O2 sats have fallen by another 5% which is apprently bad. The only thing that freaked me out was that I would wake up being attached to a respirator which would be helping me breath till I could breath on my own, so this would mean having tubes coming out of my chest, kinda freaked me out but other than that everything else seemed fine. Little bit scared about it, but I reckon thats probably normal, the woman that was ther from Harefield was really nice and seemed really positive although I think she thought I'd be more freaked out because she commented several times about how upbeat I was, and I just told her this was an enevitable stage that was always gona happen and I've known that since I was about 4 years old so I've had about 16 years to get my head around it, and then she commented on how healthy I look and I just said that I was lucky :-D So thats how my day went Stacie :-D
	Life is worth the fight :o)

Karen Members Profile Send Private Message Find Members Posts Add to Buddy List Member Joined: 21 Oct 2010 Location: Essex Points: 558	Post Options Post Reply Quote Karen Thanks(0) Quote Reply Posted: 06 Jul 2011 at 12:14am
	Stacie I am so pleased for you and it sure does help if you are positive and upbeat about all of this. what are your Sats ? mine are always low. I think if you have good family and friends support that is good for you too. Also you have your age on your side and I do wish you all the best and all the luck in the world. Karen xx

Kathryn Members Profile Send Private Message Find Members Posts Add to Buddy List Member Joined: 26 Oct 2010 Location: UK Points: 145	Post Options Post Reply Quote Kathryn Thanks(0) Quote Reply Posted: 06 Jul 2011 at 8:37am


Kathryn Members Profile Send Private Message Find Members Posts Add to Buddy List Member Joined: 26 Oct 2010 Location: UK Points: 145	Post Options Post Reply Quote Kathryn Thanks(0) Quote Reply Posted: 06 Jul 2011 at 8:56am
	Ooops! Stacie thanks for letting us know how you got on. It is only natural to feel scared as it is a big step, but a step in the right direction to help you feel better. Keep positive. x

Rita Members Profile Send Private Message Find Members Posts Add to Buddy List Member Joined: 21 Oct 2010 Location: Brecon Wales Points: 397	Post Options Post Reply Quote Rita Thanks(0) Quote Reply Posted: 06 Jul 2011 at 9:21am
	Wishing you all the luck in the world and so pleased your so positive Keep smiling Rita xxxx
	To receive a smile give one away

Miriam Members Profile Send Private Message Find Members Posts Add to Buddy List Member Joined: 25 Oct 2010 Points: 240	Post Options Post Reply Quote Miriam Thanks(0) Quote Reply Posted: 06 Jul 2011 at 8:12pm
	That sounds like it went ok. I have to say, I'd be a heck of a lot more freaked out than you are! I think you're fantastically brave, even if you've had years to get used to the idea.
	Live, Love, Laugh!

jent Members Profile Send Private Message Find Members Posts Add to Buddy List Member Joined: 21 Oct 2010 Points: 44	Post Options Post Reply Quote jent Thanks(0) Quote Reply Posted: 06 Jul 2011 at 9:11pm
	Stacie, you sound so positive and so brave, especially for some who is quite young. The very best of luck to you. Keep us posted.

staciep90 Members Profile Send Private Message Find Members Posts Visit Members Homepage Add to Buddy List Member Joined: 22 Apr 2011 Location: Swindon Points: 171	Post Options Post Reply Quote staciep90 Thanks(0) Quote Reply Posted: 07 Jul 2011 at 11:08pm
	Thanks guys and thanks for all the kind words. Hi Karen I have no idea what the blood pressure bit is. it was my o2 sats that worried them as last time they were at a good 93% which I assume is good for us PH people but this time they were down to 84% and I had to sit there for like 5 minutes while they waited for it to go up and unfortunatley it didn't. Nevermind I'm sure things will get better :o) Stacie x.
	Life is worth the fight :o)

Karen Members Profile Send Private Message Find Members Posts Add to Buddy List Member Joined: 21 Oct 2010 Location: Essex Points: 558	Post Options Post Reply Quote Karen Thanks(0) Quote Reply Posted: 08 Jul 2011 at 12:34am
	Stacie i wouldnt worry too much about your SATS mine go anywhere between 70% and 84% . Take care Karen x