Adventures of a Kidney Donor

July 20, 2012

Anniversary of One of My Happiest Days Ever

Filed under: Kidney Heroes — by anne315 @ 9:20 pm
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Tomorrow marks the second anniversary of my dear friend Jackie getting her kidney! I can’t believe it.  Time has flown. She has been through so much in the past two years because not only did she have a kidney transplanted IN, she also had to have one of her original kidneys removed.  So two surgeries in a short space of time–eek. It is rare, most kidney recipients actually live their lives with three kidneys. The old ones atrophy and normally don’t cause trouble.

All that is behind her now, and she is free of dialysis. Hooray! Jackie has been my dear friend since we were thirteen. I am so proud of her courage. Looking forward to many, many more years!

Go to List of Resources on Kidney Donation

*The picture isn’t really of us when we were young but it’s a good symbol.

August 30, 2010

Living with One Kidney

When a kidney is removed, the remaining kidney will increase in size to compensate for the loss of the donated kidney. Some people are alarmed at the fact that I will be living with just one kidney, but actually kidney donors live as long or longer than people who have two kidneys.  A lot of research has come out lately showing the longevity of donors.  There are slight risks of higher blood pressure and Proteinuria (excess protein in the urine.)

Health Recommendations: Try to live as healthy a life as possible but pretty much the same rules apply for donors as non-donors. Eat a healthy diet, especially avoiding too much salt to protect your blood pressure. Drink alcohol in moderation. Exercise.  Avoid ibuprofen and take things like Tylenol and aspirin instead. Tell your doctors that you are a kidney donor because you should have a urinalysis each year to monitor your kidney function.

Mental Health Recommendations: A major study conducted on kidney donors found that less than 1% regretted the decision but 3 to 10% reported depression. Depression can come from fatigue after surgery, a major letdown after a big life event and even grieving over the loss of a major organ. Also, learning the outcome of the recipient’s surgery can have a big impact on the donor. If the recipient rejects the kidney it can cause great sorrow in the donor. Donors are encouraged to share their experiences with others through blogs (check!) and other social media, to connect with other donors and to seek professsional help if necessary.

No-Nos: No pregnancy until six months after donation. (No thanks at my age!) Check with your doctor but usually no heavy contact sports like boxing,  football, skydiving etc. (Oh crap, no skydiving?) No combat. (Darn!)

Watch Out For:

  • Insurance companies trying to deny you because you have a pre-existing condition. I THINK the new healthcare laws (Thank you President Obama!) prohibit that but the health professionals are still figuring that out.
  • Flack from your employer for time off. Have your donor advocate or coordinator from the hospital talk to them. We learned at our donor meeting that a lot of employers back off after your advocate or coordinator gets involved. We need LAWS to protect organ donors.

When the book group I facilitate @ work found out about my kidney donation they were very supportive. Gretchen, a member of the group, told me that she has been living with one kidney for many years because she had to have one removed when she was a teen. She said: “If this helps” and told me about it. Yes Gretchen, thanks, it does help! Nice to hear things like that.

The research on living life with one kidney is very reassuring:

**Requires a Michigan driver’s license or check with your local library.

Go to List of Resources on Kidney Donation

August 3, 2010

Jackie is Doing Great!!!!!

Filed under: Kidney Heroes — by anne315 @ 12:45 pm
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I am so happy.  At her weekly checkup today they said that Jackie’s bloodwork was “awesome.” Go to her blog to read her wonderfully written chronicle of events. This is what it is all about.

July 29, 2010

News from Jackie!

Filed under: Kidney Heroes — by anne315 @ 5:15 pm
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A short post to say that Jackie has been blogging about her kidney transplant and as usual she has a wonderful way of capturing the story. Go here to read part one.

July 25, 2010

One of My Happiest Days Ever

Filed under: Kidney Heroes — by anne315 @ 10:00 am
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I went to U of M yesterday to see Jackie.  I was bowled over by how GREAT she looks. Only three days after her transplant–it is amazing. She doesn’t look like she had major surgery!  She is doing great.  I kept telling her: “You sound and look like yourself.” I don’t know how else to explain it. I have read about how kidney recipients start feeling better almost immediately but when you see it in person with someone you love–there are not any words to describe how great it is. Her husband Doug told me that while dialysis keeps you alive it is nowhere near the function of an actual kidney.

Jackie can’t get over the fact that she doesn’t have to have dialysis. That was three or more hours per day, three days a week. Doug went to EVERY dialysis session too so both of their lives have completely changed. Their lives will be so much more free. She said a long time ago that when she got a kidney one of the first things she wanted to do was to take a trip with Doug because she would no longer be tied down by dialysis.

We were marveling at seemingly little things. Jackie can have more fluid now such as a whole smoothie instead of a small sample of one! She can also have a Diet Coke once in awhile (instead of clear pop.) She actually had a little mini can of Diet Coke when I was there and I loved seeing her drink it.

Jackie will tell you the story of how she got her kidney so fast. It is very funny and touching. We are still reeling from the events–she went from minding her own business at home to kidney surgery in about seven hours.

The kidney is doing what it is supposed to do and she comes home today! She will have follow up appointments this week and in the coming weeks as they tweak her anti-rejection drugs. She has a list a mile long of meds to take and when the nurse came in to test her on her meds she knew EVERY answer.

When the social worker asked me two months ago why I was donating a kidney, I told her it was to see Jackie walking around with her new kidney. Seeing it in real life (and so soon!) is unreal and wonderful. I am so happy I could cry. Oh wait, I did. I was trying not to blubber in front of Jackie but I slipped twice. This was one of the happiest days of my life. Really.

*The picture isn’t really of us when we were young but it’s a good symbol.

July 9, 2010

Yippy Skippy!

Chad, my transplant coordinator from University of Michigan hospital called and the labs I did on Tuesday showed good results! They were a little concerned when I had my big tests in May about some elevations in liver enzymes. They weren’t super high but higher than they should have been for someone of my weight. Numbers like that can mean a fatty liver. Anyway, the numbers are good now.

He said, “Continue to do what you have been doing” and I had to laugh to myself because I am supposed to be following a low-fat diet and I messed up with Fourth of July hotdogs.  I also had a major slipup at my niece Emma’s open house because our friend Kim makes the best cheesecake ever. Seriously, her pina colada cheesecake is possibly the most delicious thing I have ever eaten!Giving up a kidney is easier than the lowfat diet–ha ha.

I was a little stressed about the liver enzymes somehow kicking me out of the transplant and I would have been HEARTBROKEN. I feel better now. Things are moving along! Hooray!

 Go here for Resources on Kidney Donation

June 24, 2010

Sonia: An Inspiration!

My aunt Deb and my aunt Janet’s friend Sonia is doing great after her kidney transplant! She is in inspiration to me. She put this message on Facebook only ONE day after her surgery. Her donor is named Mahama:

“I want to thank all of you who have been praying and keeping positive thoughts for me. I am still in the hospital one day after my surgery and already feel like a new person. God is great and I am thankful for all the wonderful people He has brought to my side during this time. In particular for my angel Mahama may God Bless her always.” –Sonia

I have read that recipients start feeling better almost immediately. I CAN’T WAIT for that moment with Jackie. Wonderful.

Sonia is in need of financial help since her insurance DOES NOT cover the cost of her medications, travel to Phoenix and aftercare. Any possible donation you could manage would make a world of difference for her. Donations can be made directly to a Wells Fargo Bank (or Wachovia on the east coast). The acct # is 9422873969 For The Benefit of Sonia Rodriguez. You can also send directly to her at Alchemista, 1250 S. 4th Ave, Tucson AZ 85713 No donation is too small! I hope you can help. Thank you!

For those of you living in Tucson or Phoenix, there will be a fun dinner and show at The Westward Look with discounted rooms for anyone who wishes to spend the night. An invitation.

P.S. I swiped this pic of Sonia as a baby off of her Facebook page. CUTE!!!

Update June 27 Sonia posted this today on her Facebook page:

Good Afternoon EVERYONE! I’m finally at the hotel in Phoenix and recuperating as best I can! The incision is a doozy but worth every inch and then some. Life is wonderful! Not only has a wonderful Angel saved my life but God brought back into my life dear friends and family. He gave me incredible Doctors, Nurses and everyone at the Mayo Clinic are truly God’s hands on earth.

June 22, 2010

Cojo!

I just finished Steven Cojocaru’s book Glamour, Interrupted : How I Became the Best-Dressed Patient in Hollywood. Very touching and funny.  Appropriately enough I had it with me at the hospital to read between tests the day I went to U of M hospital. I was so nervous that day (not about the tests themselves but about flunking as a donor) that I couldn’t concentrate well so I have been enjoying  reading it at home.

For those of you who don’t know, Cojo is a fashion critic often seen on television on the red carpet at the Oscars etc. On telly he is frank, sassy and funny.  In the book he is all that but also displays a nice depth when discussing his kidney disease and treatment. He doesn’t hold back when talking about the physical and emotional ramifications of kidney disease. I think it’s great for donors and recpients to read. I have been reading a lot from the donor perspective. I need to read more from the recipient perspective.

Cojo was diagnosed with polycystic kidney disease in 2004. His good friend Abby gave him a kidney in January of 2005 but it had to be removed when it became infected with the Polyoma Virus. After the agony of the kidney failure and the stress of undergoing dialysis, a new donor match was found, his mother Amelie.  In October 2005 Cojo received a kidney from his mother. There have been bumps along the way but he is doing well!

Recipient Stories

For more stories: Go to Resources on Kidney Donation

June 7, 2010

A New Kidney for Sonia

My aunt Deb and my aunt Janet have a dear friend Sonia who is getting a kidney transplant and Sonia needs some assistance. Here is the letter they sent today:

I have attached photos of our dear friend Sonia and an invitation. Sonia has endured dialysis for 4 years now and will receive a kidney donation June 21st. She is a hard-working business owner with insurance. Insurance will not cover many many costs such as hotel and food costs while she and her donor get all the pre-surgery testing. Sonia and her mother have to stay in Phoenix near Mayo Clinic for 6 weeks post surgery. She will have $2000/month medication costs.
Any of you who have visited us in Tucson have either visited her wonderful store, Alchemista, or benefitted from her wonderful homemade soaps, shampoos, lotions, or essential oils.
 
Any possible donation you could manage would make a world of difference for her. Donations can be made directly to a Wells Fargo Bank (or Wachovia on the east coast). The acct # is 9422873969 For The Benefit of Sonia Rodriguez. You can also send directly to her at Alchemista, 1250 S. 4th Ave, Tucson AZ 85713
 
For those of you living in Tucson or Phoenix, there will be a fun dinner and show at The Westward Look with discounted rooms for anyone who wishes to spend the night. I have attached an invitation.
 
No donation is too small! I hope you can help. Thank you!
 
Deb and Janet

June 1, 2010

We Are On Our Way!

Whew. I think I made it! After whining about not hearing from The University of Michigan, a letter was waiting for me at home.  They want to run my labs again (due to slightly high LDL and liver enzymes) but my left kidney looks good for donation!

It will take awhile to get all four of us lined up and ready but we are on our way! I remember sitting in the waiting room years ago with Doug, Justin, Michael and other family members when Jackie was having her grafts put in. I was thinking (and I bet they were too): “We have to do whatever we can do to get Jackie a kidney.” This is a BIG step toward that day.
Woo-hoo!!!!! 

Go to Resources on Kidney Donation

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