| Author |
Message |
LivingYoga
Member
Username: Livingyoga
Post Number: 2
Registered: 10-2011
| | Posted on Friday, October 21, 2011 - 12:32 pm: | 
|
I am in the process of completing my final stages of testing to be cleared as a live liver donor to my beautiful sister. I am a healthy young 41 year old. I teach and live a yogic lifestyle. I am nervous at times but when I consider what my intentions are, I have no fear or trepidation about my decision to be a donor.
Tawnya, LiverGiver, Heather your stories have inspired me to join this blog. I thank you for your words of wisdom. I have laughed and cried while reading your stories today. I too, someday, hope to be a source of strength to others that may be on the threshold of such a life altering act of kindness.
Namaste' (the divine in me honors the divine in you) |
LadyDi
Forum Leader
Username: Ladydi
Post Number: 2711
Registered: 03-2008
| | Posted on Saturday, October 22, 2011 - 10:02 am: |
|
Welcome to you LivingYoga! Sounds like you live a very peaceful and healthy lifestyle. Has a surgery date been set?
As you have commented, we have some wonderful people on this site who have supported many in their donation journey.
We hope you will visit often!
|
DonR
Member
Username: Don62
Post Number: 18
Registered: 09-2011
| | Posted on Tuesday, October 25, 2011 - 09:14 am: |
|
Welcome, I turn 41 in December and I donated a portion of my liver to my brother back in July. I consider my donation the single most important thing I ever did. My brother had a lot of problems post op, but he's out of the woods now and got a target date of November 3rd to come home! It's been a long hard road that started almost a year ago, but the ends seem to have justified the means. There are a lot of great and supportive people out there, and especially here on this website. Please feel free to contact me if there are any questions I can answer, or concerns you want to discuss, I'll help in anyway I can.
Don R.
Liver Donor to Brother 07/05/2011
Penn State Hershey Medical Center
Hershey PA |
|
Liver Giver
Forum Leader
Username: Beteboop
Post Number: 866
Registered: 10-2007
| | Posted on Sunday, October 30, 2011 - 09:52 pm: |
|
LivingYoga,
Welcome to our family! Thank you for your kind words. It makes it all worthwhile to know that our stories, our lives, inspire others as they are traveling their own journey.
Would you tell us a little about your sister? Your transplant center?
You are doing such a great thing for your sister! I am Looking forward to getting to know you.
Dawn
Forum Leader Living Organ Donation
Liver Donor 11/19/07 to brother Anthony
Good and bad things happen in life, but what matters, what defines us, is how we handle them |
|
Tawnya
Member
Username: Daddys_liver_girl
Post Number: 68
Registered: 04-2010
| | Posted on Tuesday, November 01, 2011 - 03:15 pm: |
|
Hi LivingYoga,
I know exactly how you feel about this site. I read Liver Giver, and Nicole's story, which inspired me to reach out and join this site. I had 3 weeks until my donation and everyone here on this site, held my hand through my entire procedure. The people here are awesome! I was happy to hear how healthy you are to begin with. I really believe what you eat and how healthy you are going into a surgery such as donation, determines your healing process. Your sister is a lucky woman to have a brother like yourself.
I'm with Liver Giver, I would love to hear more about you and your sister, and when this surgery scheduled to happen. T
I am a Live Liver donor.
I donated my right liver lobe to my father on 4-29-10.
USC University Hospital in California performed our surgery. So far, so good. We are both doing great. |
|
LivingYoga
Member
Username: Livingyoga
Post Number: 4
Registered: 10-2011
| | Posted on Monday, November 14, 2011 - 09:13 pm: |
|
Hi All,
Thank you for your warm welcome.
I received word on 11-11-2011 that I was cleared to be my sister's live donor. Surgery is set for December 6. They will take my left lobe. I am told that this will be an easier healing for me as a donor.
When I called my sister to break the news, I asked her if she was busy on December 6th. When she asked why, I asked her if she wanted to share a liver.
Tonite when we touched base, she got teary and said how she feels honored to share my liver and how close that will make us. I told her she would be my "split apart."
My sister is a beautiful 43 year old mother of 4 terrific children that range in age from 6 to 15. Her love in life is to be a mom.
When she told me she needed a liver transplant and that she could ask someone to be a live donor, I immediately offered. I have never even given blood, I never met the weight requirement! Not the case now, I weigh 124 pounds. I just offerred because from the heart, it felt like it was the only option. I don't have kids, it was my choice not to be a parent. I had a hysterectomy a year ago for my own health issues. It was a cure for me and I feel great. I think it prepared me for this in many ways.
IT's funny, when ever people would talk to me about the risks of surgery or the life style afterwards for my sister, I never even flinch. What is the alternative, dying of cancer? It just feel like this is a non-issue. She tells me how amazing I am. I told her that I am doing this for an amazing woman and mother! 
She was diagnosed with a rare form of cancer called Epitheliod Hemangioendothelioma. Her is primary to the liver. Due to the rare nature of her disease, there is not a lot of research to support treatment methods. Transplant is the only option with the highest outcomes.
We are working with The Yale New Haven Transplant team. They have been great.
I am a very spiritual being. I believe that this is a part of my dharma (duty in life..the work I am here to do). I am not fearful of outcomes, I know that this will be successful and prosper on our journey.
Thank you all for your support and kindness.
Namaste' |
LadyDi
Forum Leader
Username: Ladydi
Post Number: 2724
Registered: 03-2008
| | Posted on Monday, November 14, 2011 - 10:10 pm: |
|
Congratulations to you and your sister! How awful to have such a disease! The time will pass quickly. Keep us posted how you both are doing.
|
Heather
Forum Leader
Username: Heather
Post Number: 3357
Registered: 05-2003
| | Posted on Tuesday, November 15, 2011 - 04:58 pm: |
|
Congrats to you and your sister. Your anniversary will be right around mine..I donated to my dad 12 years ago (kidney) on Dec. 1.
Keep us in the loop and let us know when you leave to go to the hosp.
look forward to hearing your story!!
Heather
Forum Leader - Living Organ Donation
Heather's Blog
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago
DONATE LIFE |
|
DonR
Member
Username: Don62
Post Number: 19
Registered: 09-2011
| | Posted on Thursday, November 17, 2011 - 07:45 pm: |
|
Congrats, it is great news that you will be able to help your sister. I know how you feel, it was never a thought for me either when the decision was made to donate to my brother. You are doing a wonderful thing. It was a bit of an emotional roller coaster for me, but I had a great support structure at home. If I can give you one bit of advice it would be that once the surgery is over be at peace knowing you did all you could. From that point until you regained your health and strength focus your energy on you. I got very protective of my brother and had a lot of separation anxiety when I got discharged and he was still there. The hospital is 3 hours away from our home town and I tried to "gut it out" and ignored some of my own minor complications in favor of traveling to see him and it set me back a bit.
Don R.
Liver Donor to Brother 07/05/2011
Penn State Hershey Medical Center
Hershey PA |
|
LivingYoga
Member
Username: Livingyoga
Post Number: 5
Registered: 10-2011
| | Posted on Friday, November 18, 2011 - 07:19 am: |
|
DonR,
I want to thank you for sharing your story and wisdom. You are amazingly humble. I really appreciate your validation of that approach to aftercare.
In making my preparations, I made it clear to my support network that I wanted to be taken care of separately from my sister. I knew that I would worry and want to help her. I have been her health care advocate all along. I slept at the hospital with her so she would not be alone. I helped communicate between nursing/doctors and family when things seemed convoluted. I know that I cannot do that if I am healing from a major surgery.
Hard to admit but quite necessary. Thanks for being the voice of support and validation.
On another note, I hope that you are recovering well and have ironed out the kinks in your own recovery. Prayers to you and your brother.
Left Lobe Live Liver Donor
December 6, 2011 |
|
Nichole
Member
Username: Nichole8
Post Number: 3
Registered: 08-2011
| | Posted on Friday, November 18, 2011 - 02:09 pm: |
|
Hi, everyone. I'm so happy to hear from others in my situation and am filled with hope. On december 14th I will be donating a portion of my liver to my mother. I am so very nervous (my hair's falling out UGH) but i wouldn't have it any other way. Like living yoga stated, I feel that this is my purpose and all part of the plan. It's nice to have this site for strength and hope. It makes this experience not so scary. Thank you all for sharing your stories. |
Liver Giver
Forum Leader
Username: Beteboop
Post Number: 871
Registered: 10-2007
| | Posted on Friday, November 18, 2011 - 10:01 pm: |
|
LivingYoga,
Congrats on getting your date. And kudos for the early realization that we need help through recovery. That is huge!
Nicole,
Welcome to transplantbuddies! There are definitely more of us liver donors for you to talk to since I joined. Tomorrow is the 4 year anniversary of my liver resection and it has changed me and my world!
I think donors all have that sense of donating being part of our "purpose" to be here. Maybe not but I seem to notice that often.
Gosh, don't let your hair fall out...lol.. obviously being nervous is expected... it is major surgery and you are now a healthy person. Where are you having your surgery? Are you comfortable with the answers to your questions? Don't be afraid to ask any questions of us, here. We are here because we've been there and want to help others!
Soon both you and LivingYoga will be able to share with others too!
Contact me if you want to chat!
Dawn
Forum Leader Living Organ Donation
Liver Donor 11/19/07 to brother Anthony
Good and bad things happen in life, but what matters, what defines us, is how we handle them |
|
DonR
Member
Username: Don62
Post Number: 20
Registered: 09-2011
| | Posted on Saturday, November 19, 2011 - 01:28 pm: |
|
Nicole,
I can relate to the nervous part. I don't fear much, I'm a 15 year veteran police officer with 10 years on the bomb squad 7 of them as a lead bomb technician. HOWEVER, after I got cleared (about a month pre-op) I was a nervous wreck; the realization that it was really going to happen hit home. I didn't exactly lead a completely healthy life style pre-op, I worked out (even a little yoga, LivingYoga) and did martial arts, but I smoked and drank just as much as the next guy (I quit both in Dec. 2010 in preparation for surgery). I kind of thought in the back of my mind that the medical center would find a reason to bounce me. They didn't though, only 30% of people who want to become donors make it through screening. Luckily for us, I being desperately average all my life, made the top 3 for once.
Anyway, when I got word that it was a go, I got very nervous. I didn't sleep right, I was missing work-outs, I ran around and put my affairs in order. I got my life insurance papers to my lawyer, told him how to disperse things. Hope for the best but plan for the worst is part of our bomb squad creed (along with initial success or total failure). The day before the surgery I got called out on a device and it actually kind of relaxed me to work the problem. Then we left for the hospital and spent the last night as a family, me, my wife and kids, and my brother and his wife and kids. That night I fretted so much I actually worked my self up into a fever, then I panicked that they would postpone the surgery if I had a temp and I worried more.
When I got to the hospital the next morning the only thing I asked was "who's in charge of the valium". My point with this whole story goes back to my earlier statement to LivingYoga about taking care of yourself first. Because of my nerves I didn't eat right, sleep right and I missed work-outs. I was not at 100% when I went for surgery and I think it led me to having some bowel and bladder complications that kept me in the hospital for 10 days instead of 4 or 5 like I was initially told. Please try to control your anxiety, keep your mind and body healthy pre-op. I don't have the answer to how to do that, but knowledge is power and those were my experiences.
Don R.
Liver Donor to Brother 07/05/2011
Penn State Hershey Medical Center
Hershey PA |
|
Nichole
Member
Username: Nichole8
Post Number: 4
Registered: 08-2011
| | Posted on Monday, November 21, 2011 - 02:42 pm: |
|
Thank you all for the advice, i'm glad i'm not alone in my anxiety. I too feel like they're gonna have to sedate me just to get me in the door lol. I'm still living in a bit of denial which is helping my nerves as the date nears i'm sure my nerves will be escalating. One problem i'm facing is that I'm not a drinker but i do smoke and have been struggling to quit before this surgery. we'll see what happens...Thoughts of valium has also crossed my mind  And again many thanks to you all for sharing your experience, strength, and hope. |
Heather
Forum Leader
Username: Heather
Post Number: 3366
Registered: 05-2003
| | Posted on Thursday, December 01, 2011 - 06:12 pm: |
|
Living Yoga....thinking of your upcoming event! Today is my 12th anniversary of donating a kidney to my dad. Hard to believe it has been that long. Hope you hop on here and let us know how you are doing before..I assume you are getting nervous the closer it gets...
Heather
Forum Leader - Living Organ Donation
Heather's Blog
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago
DONATE LIFE |
|
Nichole
Member
Username: Nichole8
Post Number: 5
Registered: 08-2011
| | Posted on Friday, December 02, 2011 - 12:46 pm: |
|
Thanks for checking on me and happy anniversary to you and your father. Right now i have finals and been working alot so i don't have time to get nervous but by next week i'm sure i'm gonna be a mess Only a week and a half until the big day. My biggest fear is pain management and how long it will take me to recover, how was it for u? |
Heather
Forum Leader
Username: Heather
Post Number: 3368
Registered: 05-2003
| | Posted on Friday, December 02, 2011 - 08:32 pm: |
|
I had the open procedure and had a huge incision so my recovery was longer than most kidney donors. Now most have the lap. My pain was not managed well in the hospital either. Make sure they DO manage your pain well from the start...that sure helps in the recovery process. Don't mean to scare you..just being honest!
Heather
Forum Leader - Living Organ Donation
Heather's Blog
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago
DONATE LIFE |
|
DonR
Member
Username: Don62
Post Number: 26
Registered: 09-2011
| | Posted on Friday, December 02, 2011 - 09:54 pm: |
|
Dilaudid pump, to me the liver donor's best friend. They put an epidural in just prior to surgery, but something happened and the needle slipped out of the epidural pocket; therefore no nerve blockage. I had the pump for three days or so, then transitioned to percosets, then just plain old tylenol (low doses 500mg every 6 hours). It was never an unbearable pain. I had a bit of a complication due to an unknown allergy to surgical staples that slowed me down a little, barring that I would've been back to full duty in six or eight weeks. I took three months, but could've gone back sooner. To tell you the truth I had that much short term disability coming to me so I milked it a little. I'm paying for it now though, double shifts to pay for Christmas.
Don R.
Liver Donor to Brother 07/05/2011
Penn State Hershey Medical Center
Hershey PA |
|
Nichole
Member
Username: Nichole8
Post Number: 6
Registered: 08-2011
| | Posted on Monday, December 05, 2011 - 02:23 pm: |
|
Thank you, you have put my mind a bit at ease except for the epidural part. I have never had kids so i havn't had one and it doesn't sound very pleasant. 6-8 weeks sounds doable but i do have it in my head that i will be bouncing back within days (denial at its best) |
Heather
Forum Leader
Username: Heather
Post Number: 3369
Registered: 05-2003
| | Posted on Monday, December 05, 2011 - 07:08 pm: |
|
Nichole.. I had an epidural and never even felt it. I had no problems with it other than it did not seem to control my pain. It works for some and not so great for others. I had never had one before either.
Heather
Forum Leader - Living Organ Donation
Heather's Blog
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago
DONATE LIFE |
|
DonR
Member
Username: Don62
Post Number: 27
Registered: 09-2011
| | Posted on Tuesday, December 06, 2011 - 05:10 pm: |
|
Heather's right the epidural did not hurt when they placed it. A small pinch is it from local they gave me to numb the area before the put the epidural needle in. It was the first time for me as well; the whole experience was a series of firsts really.
Don R.
Liver Donor to Brother 07/05/2011
Penn State Hershey Medical Center
Hershey PA |
|
Nichole
Member
Username: Nichole8
Post Number: 7
Registered: 08-2011
| | Posted on Tuesday, December 06, 2011 - 08:27 pm: |
|
i'm such a baby lol. Many thanks you all are putting my mind at ease. |
hopefulgirl
Member
Username: Hopefulgirl
Post Number: 2
Registered: 12-2011
| | Posted on Thursday, December 08, 2011 - 12:59 pm: |
|
Hi there, just wondering how surgery went for you and your sister? Sending healing thoughts. |
LivingYoga
Member
Username: Livingyoga
Post Number: 6
Registered: 10-2011
| | Posted on Saturday, June 23, 2012 - 03:04 pm: |
|
Well it has been 6 and a half months since Transplant donation. I am cleared to return to all my regular activities except I will have to wear a binder on my abdomen to prevent herniation for the next 6 months. I am back into my yoga practice and teaching a class each week.
The transplant was a success for my sister. She has only had to deal with a mini rejection. No big deal, just more anit-rejection medications. She still had cancer after the transplant and she began 8 rounds of chemo which she is wrapping up in July. She is beautiful and healthy. She had some complications after transplant but it is unclear what the cause was. Her liver was so enlarged she looked 6 months pregnant the day of surgery. Her diaphragm herniated and she had to have a thoracic surgeon repair that for her. She said it was pretty rough, worse then transplant in her opinion.
In my experience, the day of surgery was surreal. I was so at peace with my decision. I smiled as they brought me to the OR and I woke up smiling in the Surgical ICU. I walked the day after surgery with the help of two nurses. I was discharged from the hospital 7 days after donation. Then I developed an illeus and gastro-paresis. Basically, my intestines shut down and my stomach went to sleep and swelled up inside me. That led to being admitted back to the hospital 24 hours later for another 10 days. That was rough as it led to many naso-gastric tubes being inserted and removed. Not fun at all!
I was not able to eat for 8 of those 10 days and managed to lose 12 pounds.
I started this process at 126 and left the hospital at 112. Guess I lost a few more pounds somewhere. Had it not been for the re-admission to the hospital, this transplant donation was a breeze!
After that I made it home the day before Christmas Eve. Not that it mattered, I was on quarantine because they treat you as if you are on reverse isolation precautions. My husband wouldn't let anyone near me. He was so protective. I understand. I managed not to get sick during FLU season and Noro-virus season, thanks to him. My mother in law was my caregiver when my husband was at work. I stayed out of work for three months and did what I needed to do to heal.
Taking Don R's advice as well as my Transplant team, I kept my recovery separate from my sister's. My mother took care of her and her family. It just made the most sense.
Every so often, she will say to me..."you saved my life and I have a part of you inside me!" I know it is overwhelming for her. It took me a long time to say in public that I saved her life. After passing a few milestones, Christmas, New Years, her childrens' birthdays, Valentines day, Mother's day, I finally was able to humbly admit that I saved her life. The work is her to do. I know that I have done my part. I accept that I am not responsible for the successes or struggles of another. It was important to me to remember that all along.
I am 98% back to my physical self. I am a new person for what I have experienced. My priorities have shifted. I live from my heart - a place of Pure Consciousness. I falter from time to time and I remind myself that I did not live this experience to allow anything to take away my happiness or my power.
Thank you for your support and sharing in my journey.
~Om
Namste' |
LadyDi
Forum Leader
Username: Ladydi
Post Number: 2798
Registered: 03-2008
| | Posted on Tuesday, June 26, 2012 - 04:20 pm: |
|
Congratulations to you both and it is good to hear you are doing well!
|
