I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Des on April 20, 2011, 01:45:47 AM
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As you know I went for a hernia op the 5 April - woke up 2 days later in ICU - I had some reaction to the anaesthetic, they couldn't wake me up.
I was in extreme pain and could not urinate. I had a full bladder but the "peeing" action just didn't want to work so they had to insert a catheter. That resolved after a few days.
I have never suffered from high blood pressure but suddenly I developed it while in hospital.... that has now been resolved.
I was in hospital for a week. :stressed;
On my third day at home the transplant clinic phoned to let me know that the Dept of Health (currently reviewing me and my donor's files for a transplant) has replied with a long list of questions. She told me to rather not bargain on the transplant happening any more. :'( :'( :'( But if it does happen it will be a miracle.
Well, I based ALL our future plans on this transplant - It was the only thing to hope for. It made everything bearable, but now?
It all seem so hopeless !!!!
What now? What do I hope for now? I CANNOT wait for 5 more years for a cadaver kidney. I just can't.
I fall asleep crying in hubby's arms most nights.
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:grouphug; :grouphug; :grouphug;
I'm so sorry Des.
You can still hope for the transplant. You can try again, you can find out why the Dept of Health refused, if they do. You can hope for a perfect match that bumps you up the waiting list.
You can hope for the strength to muddle through until something to hope for shows up.
:cuddle;
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Oh, Des! What a scary time for you for a few reasons.
I am assuming they have a long list of questions because the donor is not related to you?
I know next to nothing about how South Africa operates, but I do remember from my brief time living there that almost everything requires government approval and that approval usually takes ages to come through. Are you the one who will be responding to the Department of Health? I hope so. Please answer all of their questions and include in your response that your transplant will quite literally save the life of another South African. If I understand the reports from South Africa correctly, getting you off dialysis will open up your chair for another person who might have been sent home to die. I would also ask anyone in any position of authority - your doctor, your local elected official, any friends you might have that are also respected community members - to write a note on your behalf. Send all of these materials together. This is what we are advised to do here in these situations, so perhaps it would also work there.
Don't give up, Des. You can make it to this transplant. The person who rang from the transplant clinic does not know for sure what is going to happen, so don't lose faith just yet.
:grouphug; :cuddle;
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Des you can not give up. Who knows what will happen to-morrowor next year. Things are changing all the time. Thinking of you.
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Des, I am so sorry. You know you have a bunch of people who love and care about you including me. You are always in my thoughts and prayers. Things might not look the best right now but the only constant in life is change. Things may be different tomorrow. You are such a wonderful person that I have to believe good things are around the corner for you. Hang in there.
:cuddle; :grouphug;
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Des, I was so sad and disappointed for you when I read this post. I hope that you can try to hang on to the hope that the dept of health can be satisfied when their questions are answered. Like the peeing issue and the blood pressure issue I'll continue to hope that this issue will be resolved.
:cuddle; :grouphug; :cuddle;
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A list of questions is not a rejection.... keep fighting for the transplant!! :boxing; :boxing;
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The whole process is a roller coaster ride - hopefully you can overcome this obstacle and keep moving forward.
Sending you HUGS des! :grouphug; :grouphug; :grouphug;
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I am so sorry....... :'( :'(
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Oh Des. Many *huggles* ... I really hope that things start looking brighter again soon.
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Des, I am so sorry to read about your unsettling news.
I wish you great strengths in this difficult time.
Best wishes from Kristina.
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Des, Dear,
The very last thing you should do is give up. Cm'on. Get up and start fighting. First of all, get yourself physically better. That will give you the running start you need.
I know, it is hard when you aren't feeling your best and just coming out of the hospital you certainly aren't.
Then think of your lovely, beautiful darling children. Next think of THEIR children, the ones they don't have yet! Think about how important it is that those wonderful future children will want to know you. YOU! Not stories about you, but the loving grandmother that you know you will be.
Then follow the advice of all the wonderful folks here. Get your doctor on your side. AND FIGHT!
:cuddle;
Draw your strength from us.
FIGHT
Show them that you are one cookie who deserves a kidney. You have done everything right so far, so don't give up!
:grouphug; :grouphug; :grouphug;
Much love,
Aleta
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I'm so sorry to hear this :grouphug; What's their reason for rejecting you for a transplant. I don't understand.
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Des I am heartbroken for you!! I know how it feels to have high hopes/expectatons then they fall flat. sending you prayers of love, comfort, and hope!
love you!
xo,
R
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Thanks :'(
I don't feel like fighting right now, maybe tomorrow.
I am yet again glad that I have all you special people in my life...... but I am just so ..... kicked in the gut, you know what I mean, just like a deflated balloon.
I just spent another 2 days in hospital with an infection. :banghead;
To answer a few of your questions.
The questions being asked by the Dept of health are related to the donor's test results and it is adressed to the doctor representing her. (we each have our own to ensure that she is protected at all times) I can only hope that he can answer all of them and that they accept the answers. I am so tired of "hoping" for the best - for now I just feel "whatever".
I am just going to go with the flow.
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Oh Des, I am new here, but I just have to respond..... not that I can say anything you haven't already heard....... but still, I "hear you"..... and understand how you feel. And don't try to make up any hopefulness at this time... you have been through so much. Rest..... heal.....
And if you decide on anything, decide to not judge your future and the rest of your life on what you can see right now. You don't know what is around the corner. Right now, look at one small thing that is beautiful, and good. Find one small thing that you can be thankful for (your husband?) Just keep doing that, hour by hour..... and then start again tomorrow.
I am far away in Alaska.... waiting too. And hoping and praying FOR you..... as are the rest of your friends here.
Blessings
Heather
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:cuddle; :cuddle; that's good des... go with the flow until you gather some more strength!!!
Hang in there....
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Sorry for all this. If the questions are related to donor's test results, it is hard for the patient to do anything. We want the kidney, but we also want the donation to be safe for the donors. We just hope that medical professionals do the right thing.
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With what you are going through right now you have every right to feel the way you do. I wish I was closer to give you a huge for real hug.
:grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
Marc
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:grouphug;
Just take each day as it comes, Des!
Reaching my arms all the way across that big, big ocean to give you a hug and hold you up.
:grouphug;
:kiss;
Aleta
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Des, don't give up hope on a transplant. I had two matching donors and the first one was eliminated for what I thought were minor issues and then at the end of all the testing for donor number two, he had to redo the dye test to check out his kidneys. We made it all the way to "The Committee" and a surgeon on the team didn't like the results of that test, luckily they let him take it again and the results were much better than expected.
The 6 weeks between being told that they didn't like the results and the test being retaken were pretty dark for me. Granted, I didn't have a surgery and complications during that time, but I was as stressed as I have ever been. Don't give up hope yet, until they close your donor's case, there is hope. Keep your chin up, rest and get through this infection stuff so you can be well enough for a transplant. :grouphug;
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I am sorry you have these stressful issues, I like to keep an eye on you even when I don't post much- you are an amazing woman! Keep your chin up! I am sure thats much easier said then done, and I wish I knew how to say what you need to hear. Thinking of you a lot!! :grouphug; :grouphug; :grouphug;
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Sorry to hear Des of the occurrances going on.
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:'(
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:grouphug; :grouphug; I am sorry for what you are going thru, the hold up and the waiting. You want to have the healthiest kidney donated to you, if there is something wrong with your donor you need to know now not after the transplant when its to late. Please dont give up remember one day at a time we are here for you. :grouphug; :grouphug;
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Des,
How are things going? Any news? I am thinking about you...
xo,
R
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The donor is trying to phone the doc, because she hasn't actually spoken to him (just the transplant co-ordinator)
She remains hopefull (I am not) :'(
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Hope can be contagious Des. I hope you catch it from her but either way, I'm sending you hugs and I'm staying hopeful. :cuddle; :cuddle; :cuddle;
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Thanks,
I know that this hopelessness (hope there is such a word) won't last long. (it better not as I am driving myself mad)
:thx;
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Don't give up hope. They told me it would be a 5 to 7 year wait for a kidney.....I got one after 2 years. Never mind what they say...they don't know.
http://youtu.be/2yMpCZG019w
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Keep hoping for the best. Stay strong!
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i've been avoiding the computer along with almost everything else so this is the first i've heard of this. keep your head up (well hold it for you) know you are loved and the only way to go from here is up!!!!!!!!!!!!!!!!
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I found this in a book:
"In this life you are either
Busy living or busy dying.
The difference is hope ."
-The Shawshank
Now I know why my hope is gone - because I feel like I'm dying. :flower;
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Ahhhh, Des, honey, so sorry to hear this news. Have not seen you in FB in forever. Please keep your chin up and get back in to the swing of things. Know that you are loved by many people, and dont give up!!
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I found this in a book:
"In this life you are either
Busy living or busy dying.
The difference is hope ."
-The Shawshank
Now I know why my hope is gone - because I feel like I'm dying. :flower;
Great Movie!
Morgan Freeman does that quote in his great voice.
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Des,
We are all dying. The important thing is to LIVE until the time comes to slip away.
LIVE, :flower; live, :flower; live.
:grouphug; :grouphug;
Sending all sorts of loving vibes.
:bestwishes;
Aleta
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I wish the surgeon would call back your donor, that just seems rude after many day's. I can expect a day or two due to their busy scheadule, but comeon, have some decency to call someone back to answer an important question.
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Miracles do happen ya know!
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I found this in a book:
"In this life you are either
Busy living or busy dying.
The difference is hope ."
-The Shawshank
Now I know why my hope is gone - because I feel like I'm dying. :flower;
Des I am thinking about you often and how sad you must feel to be so close to having a second chance. I know I would be a hot mess right now too! But sometimes when I lose faith and hope, and feel like the machine is draining my life away, I remind myself of a couple of things....
1. No one is promised a tomorrow.
2. Some people live a whole lifetime and never really live. Instead of asking "why me" think "why not me." Without suffering there would be no compassion.
I know this is hard to remember and it is difficult to keep your chin up, when you are low in a valley, but I believe in you, in your donor, and in miracles. Hang tough friend!
xo,
R