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Username: Ladydi

Post Number: 1467
Registered: 03-2008
Posted on Monday, February 02, 2009 - 01:29 pm:   Edit Post Delete Post Print Post

Before my husband’s kidney failure, I knew very little about kidneys as an organ, let alone kidney disease. Unfortunately, we had to learn very quickly.

I came home from work one day in August of 06. My husband said he did not feel well and asked to go to the local prompt care. I knew something was wrong, as he very rarely asked to go to the doctor. After running blood work, the doctor at the prompt care gave us an envelope with the results and told us that Gregg was in renal failure and we should go promptly to the ER. After many, many tests, examinations and a kidney biopsy, the only reason they could find for his kidney failure was unrecognized high blood pressure.

He originally started on peritoneal dialysis and we started the journey on him being approved to be on the transplant list. Unfortunately, right at Christmas 06 he was back in the hospital. This was his second peritonitis infection. It was determined that he had micro-perfs in his bowel that were letting bacteria into the peritoneal cavity, so he could no longer continue with that method of dialysis. He was discharged Christmas Eve day with an AshCatheter in his collarbone area, and did his first hemodialysis the day after Christmas. Since it was his first visit, I was allowed to go in with him.

When we first went down to Barnes for the transplant list evaluation, it was October 06. , I told my husband that I wanted to do at least the preliminary testing to be a donor. It was determined that I was acceptable to continue to test as a potential donor. When he had to go on hemo, I became even more determined to complete the evaluation and testing , as I could not stand the thought of him being hooked up to a machine four hours a day, three days a week. It tore me apart to see him hooked up to that machine just sucking the blood out of him. He was somewhat resistant at first, but I convinced him that my donating a kidney was the best thing to help him.

And so begins my story about the donation journey ……..

What can I say – this part of the process encompassed about every emotion possible – anxiety, fear, love, impatience – you name it.

Pre Donation was a long time event. I decided the first of January 07 that I wanted to continue the process to donate. However, not only was the testing required, but I was too heavy. I needed to lose about 50 pounds. Barnes is very particular that the donor be of healthy weight. I joined a gym, hired a personal trainer, and started on a sensible (Key word – sensible!) diet. It took from January to the first of October for me to lose all the needed weight, but I did it – I was determined that I needed to do this to help my husband. Working out and losing the weight literally consumed my life and time for those 9 months. It was frustrating, as I was hoping it would take less time, and that we could do the surgery sooner, but did not work out that way.

I also had to go through a number of tests and procedures. Fortunately, I had just had my physical, PAP and mammogram the previous November, so those records were sent for review. I had to do a blood glucose tolerance test (twice), additional blood testing( twice) , EKG, and chest XRay. I also had to have the dreaded colonoscopy since I had just turned 50. (Told my husband he must know I loved him if I went through this for him!) Once I had lost a good amount of the weight, they had me come down to Barnes in August where they did a nuclear GFR test to be sure of my kidney function, as well as the “fancy Cat Scan” to determine my kidney structure. I was also required to talk extensively with the social worker regarding my decision, state of mind, etc.

At that point, all the information was reviewed by the donor doctor. She was a nephrologist designated as a donor advocate. She worked solely on the donor’s behalf and did not have any duties or access to any recipient records. Her only concern was the health of the donor. The pre-transplant coordinator said that she (the doctor) was “like a mother hen” and very protective of the donors and their health. She was the one that had determined what testing I needed to have done. Once she approved of me as a donor, it then went to the transplant committee who also approved me as a donor.

Once I was approved, I went to Barnes for the donor doctor to do her physical on me and to meet with the donor surgeon. He was a very nice and patient doctor. I had been worried because I thought I was going to have a mini-nephrectomy where they would cut into my back and remove a rib to get to my kidney – not a pleasing prospect! I had no idea about laprascopic procedure. He explained that he and his partner had done over a hundred of these and that I was eligible for the lap as I had no prior abdominal surgeries or other physical abnormalities that would preclude this procedure. He looked me over and showed me exactly where they would be cutting and what they would be doing. Such a nice man! He even called me at home on a Friday evening to talk with me because he knew I was nervous! It was at this visit to the donor doctor and surgeon that the surgery date was set of 10/30/07.

Prior to that time, determination to get approved had been my main goal. Now I was approved and surgery date set. All of a sudden, fear set in – what the hell was I doing! I had never been in the hospital before in my life! I was really scared and did not know what to expect. I was petrified! And who could you talk to? I knew no one who had been through this. The post transplant coordinator got me hooked up by phone with a woman who had donated about a month prior to her mother. She was able to tell me how it worked and what to expect both surgery and recovery. Okay – no longer petrified, but still scared. But, I knew it had to be done, and I knew I could get through it. I busied myself getting things ready for my husband and I to go to the hospital and getting things in order for our recovery. What was interesting , after the surgery was over when my husband and I were talking, I found out he was just as anxious and nervous as I was about the whole thing. I never talked to him about my nervousness because I did not want him to feel guilty or call it off, and he never talked to me about it, because he was afraid I would feel pressured – he thought I had enough to worry about without dealing with his anxiety.


My husband’s brother and sister drove us down to St. Louis. We checked into Barnes Monday 10/29, the day before our surgery. The day was spent redoing EKG, chest X-Ray and blood work (20 vials of blood – a wonder I didn’t faint!). We also were seen by surgeons, nephrologists and anesthesiologists as well as a variety of techs and nurses. A little disconcerting in that I thought my husband and I might be together. However, they put us in separate rooms, with separate nurses so that procedures, medication, etc did not get confused with the two of us having the same last name.
I sat with my husband a bit during the evening, but you pretty much had to be in your room for the parade of people that were coming in. We were allowed to eat and drink up until midnight, and not required to take any type of bowel cleansing regimen. I was still pretty nervous, but , surprisingly, I slept pretty well that night.

About 5:00 on Tuesday morning, the nurse came in and told me they were calling for me in surgery. I was very nervous and on the verge of tears. Plus, I was down in the surgery waiting area by myself – they had told my brother-in-law and sister-in-law that surgery was at 6:30 so they weren’t even there yet. In addition, I had no idea where my husband was at. The anesthesiologist was very nice and comforting – she knew I was upset . I told her I was scared because I had never been in the hospital before and didn’t know where my husband was at. She gave me something to calm me. The last thing I remembered was being wheeled into the operating room (smaller than I thought it would be) and climbing onto a steel table with like a gel pad underneath me.

When I woke up it was about 4:00 that afternoon. I got to tell you, I hear all these people talk about waking up in the recovery room, high fiving the recipient, etc. – not me! I don’t even remember the recovery room! They had me hooked up to fluid and morphine along with a foley catheter. They showed me how to use the pump on the morphine. Evidently the remaining kidney was working well, because they had to empty that catheter bag an awful lot! I was pretty confused when I woke up, but I was thirsty, so my sister in law gave me water to drink. Except I threw it right back up! The nurse brought me something intravenous to calm my stomach and I had no problems after that. All I did the rest of that first day and night was sleep. That first day was definitely the roughest day as to how I felt – sore, bloated, and confused from the anesthetic.

The next day, they took out the catheter and got me up. That first time of getting up was a doozy! But I did it and went to the bathroom on my own and walked down the hall to see my husband. They had told me he was doing fine.- the kidney started working as soon as they hooked it up. My surgery took 2 hours and his took 4 hours. They took off the bandages on my two port holes and incision which left only the steri strips. The incision was 3 inches immediately to the left of my belly button. The kidney had been removed through that incision in a mesh bag. No problems other than a couple tape burns from the bandages. They also disconnected the fluid and morphine pump as the excess fluid was bothering my asthma. The only complaint I had at that time was that I asked for an inhaler for my asthma and it took forever for them to get me one. What struck me at the time was how relaxed I was and how, all of a sudden, all the stress I had felt pre-donation had disappeared. Guess I felt I no longer had anything to worry about!

I never really did feel any pain. It was more of what I would call discomfort. My stomach felt swollen – like I had a big football in front of me. The surgeon told me that I hadn’t pressed my morphine button very much . I think I was too out of it most of the time to worry about pressing the button! After they unhooked the morphine, I took Percocet a couple of times. Once when I was feeling a little sore and another because the laxative they were giving me gave me diarrhea. They stopped the laxative after that. I got up a few times a day and did my walking so I could see my husband, but spent majority of the time relaxing. My appetite was not the greatest – just wasn’t hungry. I did eat some of what they sent me, particularly the fruit. I did it mainly because I knew they were watching everything I ate and drank, and didn’t want my discharge or anything disrupted by the fact that I wasn’t eating anything. By the time they sent us home on Saturday, my appetite was back to normal. In fact, I almost asked my sister-in-law to stop on the way home because I was craving a McDonald’s double cheeseburger!

I must also compliment the care and attention we received at Barnes. My sister in law and brother in law had to leave on Wednesday morning, so we were essentially on our own until they came on Saturday to pick us up to go home. You hear all kinds of horror stories about having to wait ages for stuff, lack of attention, etc. but we saw none of that. If you rang the bell, they were right there. We really received quality care.

We were discharged on Saturday. My husband’s brother and sister picked us up and took us home. It was so good to be going back to our own home! My husband looked so much better. He commented that he hadn’t realized how bad he really felt until he started feeling good again. We all knew this had been the right decision and this was a great triumph and success.


Recovery was definitely a time of great joy. My husband was doing exceptionally well and had his old energy, color and good humor back. The month of November was beautiful – perfect for our daily walks together as we recovered. We were inundated by cards, flowers and friends. For the first two weeks, I did not have to fix dinner as friends, co workers and relatives brought us a complete meal with enough left over for lunch the next day. This was definitely a good thing as I struggled the first week to even make breakfast – too much time on my feet made those stretched abdominal muscles ache! My trainer at the gym called to check on me, and commented that was one of the downsides of being fit – the muscles would thicken and that they probably had to stretch my abdomen pretty well to get in there. I was just so touched by the outpouring of help and support that we received from people!

Each week seemed to improve – better and better for recovery. I was able to do more and walk farther each day. By the end of week 5, I felt I was ready to return to work. My husband really wanted me to take another week. He told me he had so enjoyed being able to be with me for all that time! However, I knew I was ready to go back. I went back the 6th week half days, and by the 7th week I was back to work full time with no problems - I wasn’t even tired!

About 8 weeks post donation I returned back to my exercise/ weightlifting routine – slowly! At about 5 months out I was even exceeding what I could do pre-donation. My husband continues to do very well – they love talking to him because he is such a great success story, and I feel absolutely normal. About 4 months out, I had orders for blood work to be done to establish a base line kidney function for my own doctor to follow – results were good. I went for my annual physical shortly after that – everything normal. My doctor said the remaining kidney must be doing its job – my blood pressure was 110/70.

I believe this whole experience has made my husband and myself closer. I think we realize how much we love and value the other, and that our time together is even more precious. I think also that my view on life has changed – I don’t sweat the small stuff anymore. When you have faced something of this magnitude, some of those small things from before just don’t seem quite so important. I also believe that this has saved me some health related grief down the road because, if not for the donation, I would probably still be overweight and struggling with health issues of my own.
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo
Courage is being scared to death and saddling up anyway - John Wayne
Username: Mamaru

Post Number: 353
Registered: 06-2008
Posted on Monday, February 02, 2009 - 01:36 pm:   Edit Post Delete Post Print Post

Lady Di,

Beautifully said! I agree with you on everything.
Donated a kidney to husband 6/26/2008
Husband and both kids have PKD

I found this on a website and its so true
Username: Ladydi

Post Number: 1470
Registered: 03-2008
Posted on Monday, February 02, 2009 - 04:20 pm:   Edit Post Delete Post Print Post

Thanks, Robin. I had never given my story to Risa, so I figured with the new forum it was about time to post it on there. Now it's your turn to post your story!
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo
Courage is being scared to death and saddling up anyway - John Wayne
Karen R.
Username: Relivkaren

Post Number: 2516
Registered: 07-2007
Posted on Monday, February 02, 2009 - 09:59 pm:   Edit Post Delete Post Print Post

Lady Di:

Your story is amazing! Thank you for sharing all of your feelings and pre and post donation. You both really worked hard to make this work for each other. I would say that you saved each others lives. What a beautiful love story!!

God Bless!
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Listed Feb 2008 - Double Lung at Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.
Hostess Risa
Board Administrator
Username: Risa

Post Number: 7997
Registered: 05-2003
Posted on Tuesday, February 03, 2009 - 12:06 pm:   Edit Post Delete Post Print Post

I always thought you have an amazing relationship. You are a great Woman Diane.
Thank you for sharing your story.:-)
CF- diagnosed at 2 years old
Florida, USA
1st Tx - 96 LUMC
2nd double lung tx-05 JMH

TxBuddies Thanks page- Sponsors and Partners
Username: Becksmom

Post Number: 777
Registered: 02-2007
Posted on Saturday, February 21, 2009 - 07:04 pm:   Edit Post Delete Post Print Post

Lady Di,

Very beautifully written... and inspiring!!!

I had not realized how much your journey paralled Beck and Dad's for the donation process. Beck had found out in Aug 06 that her kidneys were failing and Dad started his weight loss regimen in Jan 07. Their surgeries took place in Aug 07 after Dad had lost 40 lbs.

THANK YOU Lady Di... and CiscoKidney07 for all of your inspiration! May you continue to share GOOD HEALTH, MUCH HAPPINESS, and those DAILY WALKS TOGETHER... for many, many years!!!

hugs and much love, kathy
Beck received kidney on 8/23/07 from Dad at UCSF.  Pancreas to follow soon...
Forum Leader: Kidney/Pancreas and Living Donor
Username: Still_standing

Post Number: 96
Registered: 11-2008
Posted on Monday, February 23, 2009 - 11:34 am:   Edit Post Delete Post Print Post

Lady Di,

You really do write well.

You should be very proud of yourself for the weight loss. It is very hard to lose weight. Fifty pounds in 9 months is amazing. Your story is incredible. I knew you had donated to Cisco and I think it's amazing that you had to work that hard to be able to do it.

The two of you are the nicest people. I'm glad everything worked out well and in the end you are healthier which is just the "icing on the cake"!!

Liver Transplant
Username: Heather

Post Number: 2077
Registered: 05-2003
Posted on Tuesday, March 03, 2009 - 06:43 pm:   Edit Post Delete Post Print Post

Diane..I can really relate to much of your story...especially the part where you finally got a date..and all of the sudden the fear set in. I was also peterified..never really having been in the hospital before either.

I am so happy you were treated well and recieved such good care while in the hosp. donating to Gregg. I, for one, can say my stay and experience was not lovely at all...sad to say. I would never recommend Rush-St. Lukes-Pres. in Chicago to anyone..for anything. Hope I was the exception there and not the rule.
Thank you for sharing your story.

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

Username: Ladydi

Post Number: 1567
Registered: 03-2008
Posted on Wednesday, March 04, 2009 - 01:23 pm:   Edit Post Delete Post Print Post

I feel really stupid - I am negligent in checking this forum on a regular basis and here you guys have posted such nice comments and I haven't seen them! Thank you so very much for your support and kind words! Cisco and I are indeed truly blessed!
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo
Courage is being scared to death and saddling up anyway - John Wayne
Username: Gregg

Post Number: 1905
Registered: 03-2008
Posted on Wednesday, March 04, 2009 - 02:18 pm:   Edit Post Delete Post Print Post

What LadyDi said was basically true, except for NURSE RACHETT and her sister NURSE RACHETT.When we went to Barnes for our initial interview by the doctors, we were led to a room where a nurse was talking to us about the possibility of having a transplant. She was a middle aged woman, tall and thin. I could not help but see that she was all business. You know what kind of a cut up I am and I was trying to get her to laugh or at least smile. Boy, that was a no go! In any case, I finally did manage to get her to smile, but only when I said something about the fact that I was going to have to get a colonoscopy. I met her "sister" here in Springfield at one of the doctor's offices. I just don't understand why folks can't enjoy life. Why do they have to be so damn serious? I was trying to make the women feel more at ease. What is wrong with this picture? They weren't getting colonoscopies!
I am not out there sweating three hours a day just to see what sweating three hours a day is like
Username: Rose

Post Number: 184
Registered: 07-2006
Posted on Wednesday, March 04, 2009 - 09:17 pm:   Edit Post Delete Post Print Post

Well, they already had something stuck in that place, Cisco.

Californian with a kidney Tx from Oregon Clinic, March, 2006.
Eternal gratitude to my donor. She gave 5 organs.
a rose, is a rose, is a rose.....
Forum Leader
Username: Gregg

Post Number: 2659
Registered: 03-2008
Posted on Wednesday, October 21, 2009 - 07:52 am:   Edit Post Delete Post Print Post

LOL!! I would tell you about my donation experience, but I think LadyDi covered most everything. All I can say is that I thank the Lord that I had someone who was willing to go through this with me. What a loving and giving person!! (Can you tell I am in the dog house now?)
There are not too many things in life worth working my butt off for, but my health is one of them
Forum Leader
Username: Ladydi

Post Number: 1939
Registered: 03-2008
Posted on Wednesday, October 21, 2009 - 12:46 pm:   Edit Post Delete Post Print Post

Thank you, sweetie! You are never in the dog house!
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo

I walk slowly, but I never walk backward - Abraham Lincoln
Forum Leader
Username: Gregg

Post Number: 2664
Registered: 03-2008
Posted on Wednesday, October 21, 2009 - 06:47 pm:   Edit Post Delete Post Print Post

Boy have I got some property to sell here!! LOL!!
There are not too many things in life worth working my butt off for, but my health is one of them
Hostess Rise
Board Administrator
Username: Rise

Post Number: 13554
Registered: 05-2003
Posted on Saturday, July 03, 2010 - 09:44 pm:   Edit Post Delete Post Print Post

Just bumping this amazing story up to the top.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 JMH
Sharing Knowledge is an Invaluable Experience
Questions- Contactl Hostess Rise'
Dottie Lessard
Username: Dottie_lessard

Post Number: 55
Registered: 03-2009
Posted on Sunday, July 04, 2010 - 10:32 am:   Edit Post Delete Post Print Post

Lady Di, I so enjoyed reading your story-beautifully written and beautifully lived :-) I am so glad Rise' bumped it up to the top as it has started my 4th of July right!

You and Cisco are a great example of how donation works and how to LIVE LIFE FULLY. I hope you both have a wonderful, wonderful holiday weekend.

Author of "The Seven Letters That Saved My Life"
Coach, Athlete and Mom to Liam
Survivor of
Cystic Fibrosis, Double lung transplant 94, Kidney transplant, 03
Username: Mdcmdcmdc

Post Number: 1
Registered: 01-2012
Posted on Thursday, January 05, 2012 - 03:49 pm:   Edit Post Delete Post Print Post

Thank you for your story. I am scheduled to donate to my husband in four days. I know what you mean about experiencing every emotion possible. Glad to hear the end of the story and the great emotions that I can anticipate in the short future!

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