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Author Topic: Long journey near its end  (Read 7055 times)

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Offline Ckb66

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Long journey near its end
« on: March 25, 2014, 05:46:13 PM »
When I was 33 my older half sister was diagnosed with PKD.  She was 40.  Our parents all died young and we didn't know where it came from, the gene.  For 14 years I have watched her, slowing down, getting ill, older, weaker.  Her body has been unkind to her, 2 years ago she had a brain tumour on the outside of her brain removed, it invaded her eye socket area, her cheek.  A new socket, a further repair re-opening her head and taking parts of her leg fixed the brain.  They found her heart had a congenital problem.  Months after recovery she was back in having her heart cauterised.  All the time her kidneys and liver (also polycystic) got worse.
The hardest part of donating to her was my first step - did I have the disease.  When the results came back I was clear, the rest was about convincing the surgeons they had to do it.  We have hoped and prayed the antigen match was good enough - it was 6/6 a perfect match.  We hoped my health was good.  It was, it is.  All we have left is to drop my bmi from 33 to 30.  I am at 31 and dropping down fast.  We have passed the independent assessor, have HTA approval and now we are looking at May.  This whole process has been a gift to me.  I have had the chance to look at my motivation, my health, my exercise, my diet and to develop a new discipline and enjoyment for a slimmer, fitter life.  I have the gift of knowing I do not have the disease and that I can help my sister because she was unlucky enough to get it.  I have the gift of knowing I can help someone I love. 
So now we just wait.  She is on the transplant list, but the kidney she may have got from a stranger can now help someone else.  I do have glimpses of fear of the unknown, but they disappear as quick as I think about them.  There is nothing I have known with greater certainty.  We have 5 or 6 weeks to go and already my sister is happier knowing it will change and she can live a good and full life.  To anyone thinking of donating, I can only say it has been the single most important thing in my life.  At every stage they say it might not happen and at every stage we have passed the test.  Our journey has been 18 months long and she will have a new kidney just before dialysis.
« Last Edit: March 25, 2014, 05:49:24 PM by Ckb66 »

Offline elephant

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Re: Long journey near its end
« Reply #1 on: March 26, 2014, 07:31:01 AM »
Dear Ckb66,

I hope you and your dear sister have a successful surgery.  Keep us updated on your progress. 

Losing weight and becoming fit is a great thing to do for yourself as well.  Please be vigilant to stick with it after donation, as it will be even more important when you have a single kidney.

There are lots of great posts here about preparing for surgery.

Love, elephant

Offline Amberwoo

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Re: Long journey near its end
« Reply #2 on: March 26, 2014, 07:53:40 AM »
I'm glad you will be able to donate soon!  I will also hopefully be donating in May and know how exciting it is to feel like the long wait is almost over.  I know being a donor has helped motivate me in becoming fit as well. 

Hope everything continues to go great!
Donated Kidney on 05/22/2014
My Experience- http://kidneydonorthoughts.blogspot.com/

Offline Ckb66

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Re: Long journey near its end
« Reply #3 on: April 12, 2014, 01:39:40 PM »
Just got our date, 14 May, in Edinburgh.  I am so pleased we have a date, now my sister seems petrified.

Offline Stpfan44

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Re: Long journey near its end
« Reply #4 on: April 13, 2014, 02:50:30 AM »
Blessings ~ <3
\44/
/44\

Offline elephant

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Re: Long journey near its end
« Reply #5 on: April 14, 2014, 07:42:04 AM »
Dear Ckb66,

May the day of your surgeries be blessed. 
So you've got a month to pay all your bills, clean house, and stock up on movies and prunes.

Love, elephant

Offline CK

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Re: Long journey near its end
« Reply #6 on: April 17, 2014, 08:49:55 PM »
Best wishes.

I donated to my (now) husband who has PKD.  They took two 12 lb. kidneys out of him and put my "petite" one in there.  He's going strong 2 years later with no complications.  A handful of pills in the morning and evening and he's a normal 49-year-old man.

My surgery was easy, I was out the next day and ready to go back to work in 2 weeks. 

Your half-sister is lucky to have you.  :)

Offline Ckb66

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Re: Long journey near its end
« Reply #7 on: June 08, 2014, 04:00:20 AM »
Just a quick update on our surgery.  We are now both post-op, back in our respective homes.  Although I wanted to stay with my sister the night before the surgery, I was recommended to go back to my hotel, have a normal evening and return early in the morning.  During that evening the 'clans' started to descend as we had coordinated for us all to be in the same hotel.  Each of us came hundreds of miles to congregate on Edinburgh, a city I barely knew, even from my childhood.  With an indelible arrow on my side the reality of the whole thing still could not invade my psyche past the fact it was so surreal.  The next morning I met the surgeons and anaesthetist, swapped into my paper pants etc, confirmed it was indeed me sitting there and waited.  It was at this point my family became quite emotional.  I can't say it was worry, but it was as if the surrealism now gave way to reality as I walked down the corridor in my hat, slippers, stockings and surgical gown.  The attendants were wonderful, chatting away, laughing as joking with me to keep me relaxed.  The next thing I knew I was awake, sort of.  My surgery had taken 6 and 1/2 hours so my family were a bit nervous as they thought it would have been 3 hours.  Although we knew there were 3 veins on the kidney, the surgeons didn't expect them to be wrapped so well around my artery.  I am just lucky it wasn't converted to an open procedure.
Postoperative I can't remember much pain, not on the searing, give me meds scale, just a lot of discomfort....and a very bloated feeling.  I was mobilised quickly the next day as I wanted the catheter out and walking was the best way to achieve that.  As soon as I did that everything was literally 10 times faster in terms of healing.  For me, tiredness has been the biggest difference.  I really tried to get fit and slim down for the surgery and that has made a huge difference now.  I had a small wound infection about a week after surgery which some nasty antibiotics have cleared.  I would like to say it hasn't made any difference to my sister and I as we were already close, but it has.  We are even closer and chat daily.  She took a bit of time to really feel the benefits in terms of her activity levels.  Now she is vibrant, chomping at the bit to get better and just is so positive about life, her life.  Sometimes I wish we could just talk about something else, but it is important to her.  She even thinks of her wound like a smile!  I can't say I was frightened about anything other than getting through the tests.  It really is the best thing I have ever done in my life.  I have no children, a very happy marriage where we do as we please, when we want.  At no point in my life have I ever had to consider sacrificing anything for anyone or not having what I truly need.  This ability to donate to my sister has made me so thankful for simple things that money really can't buy.  I can see it has changed my sister and I know it has changed me.  Both in a good way.

Offline Clark

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Re: Long journey near its end
« Reply #8 on: June 08, 2014, 07:00:08 AM »
Bravo, Cissie! Congratulations!
Unrelated directed kidney donor in 2003, recipient and I both well.
620 time blood and platelet donor since 1976 and still giving!
Elected to the OPTN/UNOS Boards of Directors & Executive, Kidney Transplantation, and Ad Hoc Public Solicitation of Organ Donors Committees, 2005-2011
Proud grandpa!

Offline Fr Pat

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Re: Long journey near its end
« Reply #9 on: June 08, 2014, 03:57:44 PM »
Great news! God bless you both!
   Fr. Pat

Offline elephant

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Re: Long journey near its end
« Reply #10 on: June 09, 2014, 10:48:15 AM »
Many many years of health and happiness to you both!

And enjoy your trim figure!

Love, elephant

Offline tictaktoes

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Re: Long journey near its end
« Reply #11 on: June 23, 2014, 11:41:10 AM »
Thanks for giving another individual a gift of life. Wish you both a successful recovery.

 

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