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It's been two years today

kidney transplant

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#1 miocean

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Posted 11 March 2012 - 09:49 AM

Two years ago today I was in surgery receiving a kidney from an unknown donor. It is both a happy and a sad day, happy for me, sad for the family that suddenly lost their loved one. My donor was in great health, fell off a ladder, hit his head, and died. His family had no time to prepare or to say their good-byes but they did the most generous thing by giving life to others through donation.

I have been one of the lucky ones. The kidney began producing urine immediately and in general I have had a very good transplant experience so far. I have resumed some of the life I lost from being tied to a dialysis machine and have learned a lot these past two years. I am able to travel again and am taking advantage of this while I can. I can contribute to doing things around the house and take some of the burden off my husband who did everything for almost 6 years. I was as excited as a little kid when I was able to carry a small load of laundry downstairs for the first time! Oh, the joy in simple pleasures! I have been exploring my limits and have found that I can't do everything. In all honesty, it took a while for me to comprehend I still have scleroderma and even with a kidney transplant, chronic kidney disease.

The hardest thing to deal with is others thinking I am "cured." I look healthier, my skin has softened and I have more energy. Renal replacement therapy (dialysis or transplant) is not a cure just like there are no cures for scleroderma. I maintain my transplanted organ by taking many drugs, some very dangerous drugs with serious side effects. I have had two surgeries for squamous cell carcinoma in the past 3 months and struggle with anger issues from that drug we love to hate, prednisone. I have had difficulty walking and joint pain due to the need for a statin. The fibrosis in my lungs has worsened, but due to the medicines I take for the tranpslant, I can't be treated any further for that.

The greatest gift is the appreciation of life and the people in it. We are all traveling on our journey and touch each other as we go. You have been beside me every step of the way. There are no words to express the joy in knowing you except:

LOVE

miocean
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#2 Joelf

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Posted 11 March 2012 - 12:06 PM

Hi Miocean,

A very Happy 2nd Anniversary to you and your kidney!! :emoticon-congratulations:

It truly was a generous gift from your kidney donor's family and I feel that it must give them some comfort to know that their donation is very much appreciated. How wonderful it must be for you to be able to do so many more things because of your transplant; I think maintaining the quality of your life (as much as possible) is so important with a disease like Scleroderma.

The greatest gift is the appreciation of life and the people in it. We are all traveling on our journey and touch each other as we go. You have been beside me every step of the way. There are no words to express the joy in knowing you except:

LOVE

miocean


We are all travelling your Scleroderma journey with you; how lovely that through ISN we can meet super people to join us along the way. Despite the disease, it's enriched my life! :emoticons-yes:

My best wishes to you,

Jo Frowde
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#3 Amanda Thorpe

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Posted 11 March 2012 - 12:59 PM

Congratulations on your anniversary Miocean and thank you to the family that enabled you to have the transplant. It's a choice to use the disease to enrich your life and everyone here has made that choice. The people here are a big part of that enrichment experience and without ISN this would not have been possible for any of us.

However, this choice does not mean to say that life has become wonderful by any means, we still struggle with chronic pain, fatigue, ulcers, mobility problems, gastrointestinal issues, heart, lung and kidney problems to name but a few BUT we have made the choice to spin this around into something beneficial for ourselves and others. How many times have we been encouraged by reading about someone else's pain and what makes ISN so fabulous is that in turn each of us then encourages someone else. It's like pass the parcel with encouragement! :lol:

You are all jolly marvellous...for sure!
Amanda Thorpe
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#4 Annie20

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Posted 11 March 2012 - 01:08 PM

Hi Miocean,

Happy 2nd anniversary!!! I wish you the very best that life offers and you will forever be in my thoughts.

Take care & (((hugs))) :emoticons-i-care:


Annie
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#5 judyt

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Posted 11 March 2012 - 03:00 PM

Hi Everybody,
Having read Miocean's positive post, has sent me into a bit of a decline :emoticon-dont-know: I know, I am home and out of Hospital, and I should find that pleasing, but right now I just feel like a mess. I need some cheering up!!!

We were able to spend the weekend at our beach house, and our daughter and Grandies came too but the weather was miserable so nobody went out on the beach, the kids watched videos and argued. What else to you expect Granma??

Last night I felt dreadful, ended up spending most of the night in my La-z-boy with a bucket throwing up and dozing while the rain poured down on the city. Now I am waiting for the District Nurse to come again and dress my wound, I need to see my general practitioner and she is not available till next week so I have to choose somebody else. That is always hard because the other doctors in the practice don't know me, I lost a filling on Saturday and have a sharp tooth now which can't be fixed until Wednesday - woe woe woe!!!

Now that I have that off my chest perhaps I can haul myself out of this hole I am in.

I really need to have a good laugh at myself. But actually, it is nice to know there are people out there who understand, when everything hurts and you can't do the things you would like to do and all you feel like doing is go to sleep, it is good to be able to have a vent!!!!

Hope you all feel a bit brighter than I do today and don't let me get you down.

Warm Hugs and lots of love to you all

JudyT

#6 Snowbird

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Posted 11 March 2012 - 06:28 PM

Miocean

You have said it so well for both you and your donors family, and yes, you certainly have come a long way these last 2 years. Congratulations are definitely in order and I too send them to you! :)

JudyT

Sorry to hear you are currently in a decline phase. Feeling dreadful and throwing up sure doesn't help that cause, I agree. Let's hope that perhaps the new doctor you need to see in the interim will be great too...might not be so bad, maybe you will be pleasantly surprised? Wednesday will be here before you know it too and then your tooth can be fixed. :emoticons-yes: One by one, these things that feel so big to you right now will slowly disappear. Sure hope you feel better soon!
Sending good wishes your way!

#7 miocean

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Posted 11 March 2012 - 08:21 PM

Judy,

Gee, when it rains, it pours. Literally for you. Surgery, kids, rain, arguing, throwing up, sleeping, wound care, broken tooth...YIKES!

How is your kidney function now, you said you had some problems in the hospital?
Why are you throwing up?
What is your blood pressure?
Fatigue, vomiting and high blood pressure are signs of kidney failure.

Please don't do what I did and minimize your symptoms. Did the wound care nurse come? Can you get any guidance there? Do you need to go to the hospital rather than waiting for an appointment with someone in your Primary's group?

Please post and let us know. Can you start a new thread so your very important posts don't get buried in this one?

miocean


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#8 judyt

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Posted 11 March 2012 - 10:41 PM

Snowbird,
Yes I know - one thing at a time, Wednesday will be here soon and I will forget all about the broken tooth once it is fixed.

The doctor who doesn't know me is a nice man but couldn't really suggest much that would help. Just have to hope I have a better night tonight. We are back at the Beach house and that is always uplifting although it is still raining!!

Judy

#9 debonair susie

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Posted 12 March 2012 - 11:28 AM

Hi miocean,

Reading your reflection of what you've gained, yet lost, since your kidney transplant, truly is bitter sweet. Those of us here appreciate what you have endured over the past many years, with regard to your health issues, yet recognize your inner strength and determination.

It is so wonderful to be able to congratulate you and your kidney on your 2nd anniversary :high-five: !
Special Hugs,

Susie Kraft
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#10 Climber

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Posted 14 March 2012 - 05:27 PM

Just wanted to pop in and give my Congrats!!
Congratulations Miocean on your 2 year anniversary may there be many, many, many more !!!!!

#11 Amanda Thorpe

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Posted 14 March 2012 - 05:33 PM

Hello Judyt

Rains and pours, yep, count me in! As I don't have enough pain with scleroderma, sciatica (I am assuming that's what the pain is having been diagnosed with it at 19) has returned and I could not sleep all day Monday, all Monday night, all Tuesday and Tuesday night and didn't finally sleep until 3 a.m. Wednesday morning. When you have chronic fatigue that's tantamount to torture.

The sciatic pain was not that bad BUT the actual sensation was one of those ones that makes you want to poke your own eyes out it was so unpleasant, irritating and nerve shredding and wasn't just where I would normally expect, below the waist and running down the legs, but also between my shoulder blades. After some sleep I woke up and made the mistake of getting up as when I lied down again my legs started to go numb!

I only hope it's gone and that when I go back to sleep that the pain and numbness stays away! I have heat patches and hot water bottles at the ready!

Take care.
Amanda Thorpe
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#12 Joelf

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Posted 15 March 2012 - 02:11 PM

Oh Amanda, how horrible for you!

I've had sciatica before and remember how very painful and unpleasant it was.

I do hope you soon get some relief from the awful nagging pain you're suffering.

Best wishes,

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#13 Amanda Thorpe

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Posted 17 March 2012 - 10:45 AM

I saw my general practitioner who said it was sciatica and as you would expect the very mention of it's name and hey presto another sleepless night! My poor little pusscat just wanted to cuddle up next to me and sleep, she was not impressed with all the fidgeting, getting up to fill hot water bottles etc but bless her heart she persevered and kept coming back to sleep right next to me. As lovely as she is the only problem is that, being a cat, she cleans herself relentlessly and when she is lying right next to you and I mean right next to you this means getting poked and prodded for about 20 minutes while she cleans everywhere she possibly can.

Take care.
Amanda Thorpe
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#14 Margaret

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Posted 17 March 2012 - 02:04 PM

Hi Miocean ,
I love happy news :emoticons-yes: Thanks for sharing with us your journey and feelings. :happy-day:

Amanda & JudyT.....I sure hope you two start feeling better. :sick2:

And....to really put the damper on Miocean's good news, Gareth is on his second round of antibiotics for a sinus/ear infection that progressed into left lung pneumonia. So much for 8 weeks of Iv G infusions making him healthier!!! I guess the good news is that he did not end up in the hospital like the last two times of pneumonia.

I think we all need a group hug!!!
:emoticons-group-hug:


Take care, Everyone.
Margaret

#15 Joelf

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Posted 17 March 2012 - 02:43 PM

Oh Margaret, I am sorry to hear about Gareth!

What an absolute shame, when we were hoping that the infusions were improving things for him! Thank goodness he didn't have to go to hospital this time.

Here's a very big :emoticons-group-hug: and also one of these :emoticon-hug: especially for him as I know he likes them!!

Best wishes,

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#16 Amanda Thorpe

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Posted 17 March 2012 - 03:12 PM

:emoticon-hug: :emoticon-hug: For Gareth :emoticon-hug: :emoticon-hug: and Margaret :emoticon-hug: :emoticon-hug:

Take care.
Amanda Thorpe
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