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Author Topic: My Living Donor Transplant Story  (Read 6681 times)
wifedonor
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« on: January 24, 2007, 11:52:57 AM »

Hi IHD  ;D!!!

I'm back!!!!!!!!!!!!!!!!  Sorry, it has taken me so long to post my living donor story.  I have been online but I just couldn't form the right words to tell my living donor story.  Now I think I am ready.  Here goes..............

The kidney transplant for my husband was scheduled for 1/2/07.  We had to arrive at the hospital at 6:00am.  His parents and my sister all came with us to the hospital.  Everyone was scared.............and no one said a word in the car.  It was a long---real long------------15 min. drive to the hospital.  We checked in at the Short Stay Unit for regisitration.  While we were waiting we had my sister take pictures of us.....in order to capture the memories of the transplant experience.  The nurse came out to get us to have our final blood done and change into the hospital grown at about 7:15/7:30am.  That was pretty smooth except that is when I really felt scared because I started to cry and I could tell that everyone was scared too.  I went and changed into the usual hospital gown.  I put my personal belongings into a special bag.  Then I guess the nurse noticed how scared I was and allowed my sister to come into the back.  I calmed down a lot after that.  Then they started to ask me questions to make sure I was aware of what was happening,....and if I had any questions.  Soon after my husband was brought to the same back area and was given a number of tests and his IV.  As for me on one could manage to find my vein anywhere....and I was stuck a couple of times before they deceided to let them someone try before the surgery.  During this time one of the ministers of our church came to the back as well.  She keep both of us "entertained" and calm while we were being checked by the drs. and nurses.  She even went next door to visit with my husband.  During the same time my sister was still taking pictures....and I am so glad that I have these memories on photos.  Finally, we all gathered for a time of prayer and then I started to cry again.  I just couldn't help it since I was really, really, scared.  As I was wheeled away we passed my husband's room and I just waved.  I really started to cry then.  Finally, they let me come out with the poll and IV and give me one final kiss.  That was so touching and sad at the same time.  I just wanted to stay there almost to the point of avoiding the OR...but not really.  Finally, we stopped embracing and I was wheeled away!!!  Next I was wheeled to what they called the "holding area".  Can you believe someone just wheeled me there and left me?  Finally, someone came to get me from outside the OR because they said we were being delayed because my husband's levels were too high for potassium, etc.  Soon after I saw my husband being wheeled in the same location.....and we were stretch out our hands to touch a bit.  Then they let my in-laws, sister, and min. come to the back too.  This really calmed my fears a great deal.  From there the nurses and technicans were able to get the levels to normals and then they gave me local anatheshia to probe enough to find a vein.  It hurt so bad.......again...but at least it was done.  Next the gave my husband something to relax and then I was finally wheeled away to the OR.  I waved to my husband but this time I didn't cry like the other times.  When I got into the OR I was amazed at the size because I expected it to be bigger I guess.  Anyway, I was helped onto the table...and straped in too.  Then I remember telling the nurses that I was scared...and they said we are going to take good care of you....you are doing a brave deed.  All I did was look around at as much stuff as I could.  I didn't even feel sleepy or anything.  All I remember hearing is the nurses saying, "where is the ice?"  Then someone said it is here.  That was it....I was out cold....I missed all the details of the surgery.  Amazing!!!

Once I woke up I was in my room.  I was in an incredible amount of pain.  Can't even begin to describe it.  It was absolutely horrible --...and the worst I have ever experienced.  Please take into considereration that I have never had children, or surgery on anything else my jaw...and there was truly no pain for that procedure.  I was in so much pain that I did not want to move.  I was just that afraid.    The first night was awful.  I was in terrible, terrible, horrible pain all night long.  I was a bad roommate to my husband because I moaned and groaned all night.  The night gave my medication but it quickly wore off and I soon needed it again.  My husband was doing better than me in that he didn't have the same type of pain....but he was uncomfortable......and he was hooked up to a lot more things than me.  The next mornng I was given Perocet and that was truly effective.  It did put me to sleep and make me nauseous though.  That was bad....but it was worth it to combat the pain.  I got out of bed the day after the surgery at about 10:30am.  I didn't have a choice in the matter....but I was sick of the nose tube (took out at 6:00am the morning after the surgery) and the cathater so I was determined to get out of the bed.  It hurt so bad but I did it will little help.  After then I was able to wash up in the bathroom change into some real clothes.  I could no longer stand the hospital gown.   My husband on the other hand was basically in need of a tremendous amount of help.  He didn't get up until later in the morning....and he was quite uncomfortable due to the staples, poll, cathater, etc.  Both of us walked down the hall slowly.  When we had visitors later than afternoon we were looking good but in a lot of pain.  I really entertained all my female visitors by showing them my four incisions they were of course covered by small bandages.  Everyone was amazed than they ooked so neat and small.

I stayed in the hospital for two days so I was discharged from the hospital on Thursday afternoon.   It was hard for me to leave my husband there but I knew that I need some real sleep since while in the hospital drs. nurses, and interns were in the room every hour on the hour.  My husband did get any sleep....and we were sick of being in the hospital and of the food. 

Once I left the hospital my husband said that the "quality of care went down".....maybe the fact that I wasn't there to make sure he got what he needed was really important.....I don't really know.  He called me to tell me things and I felt really bad then.   One thing that was god and painful was the removal of the catheter.   That made me want to go up to the hospital and punch someone in the face.  Overall,  he was going so well in the hospital they he was released a day earlier than expected.  He was glad because he was sick of everyone by that time.  When he was discharged his creatine was 1.3.  That was really good...and the drs. were satisfied with his progress. 

At home it was really tough with the both of us at home alone.  Of course we had the help of people that had volunteered to do stuff but I was still the only one there to help my husband.  He basically could not do anything for himself.  He was in a lot of pain and the staples were very uncomfortable.  Anything that he would have done for himself I basically did these things for him after the surgery.  Between taking the 24 pills a day and going to the dr. 2-3 times a week it was nearly impossible at times.  Also we were not sleeping and continued not to until this week when he was prescribed Ambien.  Ambien works well and we both have sleep at least three full nights.  After the second week, my husband was able to do a few things by himself....(including taking a shower)...with the aid of a shower chair.......and I assisted as needed.  Of course during this time I have been cleaning the counter tops and walls with the Clorox solution to reduce the risks of infection.  Yet, I did hire a nurse to come and help him three hours a week.....so I could sort of get a break. 

Now it has been three weeks and the progress is positive.  His creatine is 1.24 and everyone is pleased.  He is able to do more things for himself, and the staples and stent were removed last week.  The staple removal wasn't bad but the stent was uncomfortable and painful to urinate at times.  He even had a bit of blood initially.....but that was normal according to the dr.   I was originally projected to go back to work on Feb. 1 since I was told that most donors typically return back to work in one month.  But with the above circumstances I don't feel ready to return back to my high school teaching position.  I am exhaused and sleep a lot now during the day.  Sleeping at night is better but still not perfect.  My husband is scheduled to return back to work on April 2 as a paralegal.  My goal is to rest and sleep a lot this month since January allowed no rest or relaxation with being a caregiver at home.  As silly as it sounds I feel guilty for being out for two months...because I feel my students are suffering.......even my husband needs me too.  Truthfully, I probably am not ready for such a schedule without restrictions....but I still feel emotionally torn between these aspects.

I am glad that I was donor for my husband......especially since I was his only option.  I am praying that things with his health will continue to go well....and that my creatine of 1.08 will go lower since before the surgery it was lower. 

All the best to the rest of you that are waiting....

WifeDonor


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« Last Edit: January 24, 2007, 12:00:20 PM by Rerun » Logged
Rerun
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« Reply #1 on: January 24, 2007, 12:12:55 PM »

OH Man!  What a story.  Thank you so much for sharing that with us.  I hope and pray for both of your continued healing.  AND thank you for donating.  You are truly an inspiration and a blessing.

                              :grouphug;
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charee
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« Reply #2 on: January 24, 2007, 01:31:54 PM »

Thanks for sharing that what a great story, it brought tears to my eyes  you a great person. Hope you both keep improving. :grouphug;
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Home Hemo  18 months
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from my beautiful sister
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« Reply #3 on: January 24, 2007, 01:43:47 PM »

Dear WifeDonor,
You are a great wife!
I don't know how you got by without more help. The recovery is very tough for the donor, yet you had to keep your job as a caretaker as well. AND still worried about your students too! I hope you take it easy and don't rush back to work. The kids will be fine, and you have set an incredible example for them.
I hope you both continue to do well. I have been caring for Jenna this last week and I am exhausted!
I really don't know how you do it!
Best wishes!
Karol
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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« Reply #4 on: January 24, 2007, 01:48:23 PM »

Thanks for sharing your story with us.
Glad you are both improving and hope you have a restful, relaxing, stress-free February.
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« Reply #5 on: January 24, 2007, 03:25:09 PM »

Thanks for sharing your story.
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jbeany
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« Reply #6 on: January 24, 2007, 03:30:01 PM »

 :grouphug;

Glad it's getting easier for you!
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« Reply #7 on: January 24, 2007, 03:55:01 PM »

Girl, what an account!  I went through it all with you!  Seriously!  I was feeling your pain.  When you got relief, I got relief!
Thanks for sharing with us so candidly!  Please let your husband know that there is an international community totally there with him, rooting for him and sending you both healing thoughts.
Please keep us posted. [you don't dare do differenly - I need to know how I am doing  :)]

By the way, I am a high school teacher as well.  We need to compare notes sometime.
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Rerun
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Going through life tied to a chair!

« Reply #8 on: January 25, 2007, 02:04:49 AM »

It would be great if you could share your pictures? 

                                :pics;
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coravh
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« Reply #9 on: January 29, 2007, 08:41:09 AM »

Thanks for sharing! A lot of places will not let the donor and recipient be anywhere near each other post surgery. They want each person to concentrate on their own recovery. It must have been nice.

Good luck to you both.

Cora
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angela515
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« Reply #10 on: January 29, 2007, 10:23:28 AM »

Thanks for sharing! A lot of places will not let the donor and recipient be anywhere near each other post surgery. They want each person to concentrate on their own recovery. It must have been nice.

Good luck to you both.

Cora

My first transplant my mom donated to me. We lived in same house.  ;D
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Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
coravh
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« Reply #11 on: January 29, 2007, 07:25:15 PM »

Thanks for sharing! A lot of places will not let the donor and recipient be anywhere near each other post surgery. They want each person to concentrate on their own recovery. It must have been nice.

Good luck to you both.

Cora

My first transplant my mom donated to me. We lived in same house.  ;D

lol

I meant that they were in the same room in the hospital.

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angela515
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« Reply #12 on: January 29, 2007, 07:35:57 PM »

Welll we might as well shared a room I was always in hers until they discharged us lol
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Live Donor Transplant From My Mom 12/14/1999
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DeLana
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« Reply #13 on: February 04, 2007, 09:13:18 AM »

Thank you for sharing your story, it's one that is often neglected (the donor's experience).

You did a wonderful thing, one that very few people would do (even for their spouse or siblings).  You are truly special and your husband is a lucky man.

Don't worry about your creatinine, it's fine and will probably come down.

All the very best for both of you,

DeLana   :grouphug;


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okarol
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« Reply #14 on: February 06, 2007, 11:32:46 AM »

Hi Wifedonor,
Just wondering how you and hubby are doing!
Hope all is well,
Karol
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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« Reply #15 on: March 14, 2007, 09:00:41 AM »

Thanks for your story. I'm a bit worried about my dad (my donor to-be) though, now that you say how much pain you were in after the op.  :(

Still, it's a short term hassle for hopefully long term benefit.
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angela515
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« Reply #16 on: March 14, 2007, 09:50:28 AM »

cycobully, My mom donated to me in 1999, when they didnt do laproscopic, and she wasnt in all the pain like this story. Everyones situation and story is different. :thumbup;
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Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
Falkenbach
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« Reply #17 on: March 14, 2007, 12:25:01 PM »

Thanks Angela. Dad's a tough old bloke anyway. It's me who is the sook!
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goofynina
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« Reply #18 on: March 16, 2007, 09:29:56 PM »

Thanks for your story. I'm a bit worried about my dad (my donor to-be) though, now that you say how much pain you were in after the op.  :(

Still, it's a short term hassle for hopefully long term benefit.

That is an excellent way of looking at it cycobully,   :2thumbsup;
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« Reply #19 on: March 17, 2007, 02:12:42 AM »

Yeah, I've come up with that theory recently after worrying myself senseless about it - I've realised it's pointless to keep stressing myself out about it when I consider the long term benefits.

Hopefully all will go well, and after speaking with the doctors, it seems the odds are pretty high that all will be fine.  ;)
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coravh
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« Reply #20 on: March 19, 2007, 07:02:28 AM »

You need to keep in mind that everyone experiences pain differently. Most of the people I know (myself included) that had a PD catheter inserted, didn't have much of a problem. I have one friend, though, who didn't leave the house for three months because she found it so difficult. I think a lot of it has to do with how you deal with things in the everyday as well as how you normally deal with pain.

Also, that is what pain meds are for and the hospitals are now very good in helping you deal with it.

Cora
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« Reply #21 on: August 08, 2007, 08:43:38 AM »

Thank you for your story. I'm due to get a transplant from my mom tomorrow. I feel like I know whats going to happen to her more from your account. Your are a hero to your husband and to me. Thanks for sharing.

-Jaybird
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st789
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« Reply #22 on: August 08, 2007, 06:59:14 PM »

Love is a wonderful thing isn't it, if u. have a true lover.

Thanks for sharing.
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« Reply #23 on: August 08, 2007, 09:56:02 PM »

Best of luck Jaybird, I had a successful transplant from my dad at the end of May and we are both doing well.

Please start your own thread and share your story with us when you return. Can't wait to hear how you go, I'm sure it will all be great.
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