MY EXPERIENCE AS A LIVING DONOR

Update: 3 1/2 years

2011-09-25T13:25:00.003-04:00

All is well with both of us. Sorry I haven't updated regularly, but no news is good news! My updates would have been pretty boring and redundant. I haven't had any negative issues and Greg is doing very well.
I am going to archive this blog and retire it if I can figure out how. Feel free to contact me via email, kdh621@gmail.com.

Happy Thanksgiving!

2009-11-23T23:46:00.001-05:00

Wishing everyone a Happy Thanksgiving! Greg and I are both doing well. I will post a new Love Scar picture tomorrow.

I Got My First Donation for the Kidney Walk!

2009-07-29T12:11:00.001-04:00

I want to thank my cousin, George Cassels of North Carolina, for his donation to my team for the Kidney Walk in Columbus, OH on November 1, 2009! I love you and smooches!

Please Support Me at the Kidney Walk

2009-07-23T11:56:00.001-04:00

I recently accepted the challenge of participating in the NKF's Kidney Walk.

26 Million people have chronic kidney disease and another 20 million are at risk. The NKF's Kidney Walk presents an occasion for dialysis patients, organ transplant recipients, donor families, living donors, the medical communities, and the general public to celebrate LIFE and support the Foundation's mission.

The NKF's Kidney Walks are designed to help people understand the need for early detection of kidney disease. In addition to raising funds for research and help for patients and their families, the Kidney Walk is a great way to bring the community together!

I am asking you to help by supporting my fundraising efforts with a donation. Your tax-deductible gift will make a difference in the lives of many! It is faster and easier than ever to support this great cause - you can make your donation online by simply clicking on the link at the bottom of this message.

Any amount, great or small, helps in the fight. I greatly appreciate your support and will keep you posted on my progress.

Click here to visit my personal page.
If the text above does not appear as a clickable link, you can visit the web address:
http://walk.kidney.org/site/TR/Walk/Ohio?px=1399502&pg=personal&fr_id=2020&s_tafId=16392

Click here to view the team page for Bellasmommie and Friends
If the text above does not appear as a clickable link, you can visit the web address:
http://walk.kidney.org/site/TR/Walk/Ohio?team_id=44562&pg=team&fr_id=2020&s_tafId=16392

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NKF Kidney Walk

2009-07-23T11:13:00.001-04:00

Please sign up for a Kidney Walk with the NKF. Here is the link:
http://walk.kidney.org/site/PageServer?pagename=signup&s_event_state=1201

I am signing up for the Columbus Walk.

Love Scar 7/22/09

2009-07-23T11:07:00.003-04:00

Nothing much to update! I am doing well and still have had no problems since donation.
Greg is also doing very well and goes back to the transplant center in September for a follow-up appointment.
I will update again after he goes to the doctor.
Email me if you have any questions!
I was also wondering if anyone has used Scar Guard. Thinking about trying it. Let me know if you have used it.

Extend Immunosuppressive Drug Coverage for Transplant Patients

2009-05-07T17:30:00.003-04:00

I am totally pasting an email from the NKF here. Please read and email your congressperson!
Knowing someone who has to deal with the expense of drug coverage after transplant, I can tell you that it is outrageous and these people need this help. This should be covered just as dialysis is; it is actually a lot cheaper for Medicare to pay for the drugs than dialysis.

A Second Call for Action: Kelly, Ask Your Represenative to Support Extending Immunosuppressive Drug Coverage for Kidney Transplants
Extend Immunosuppressive Drug Coverage for Kidney Transplants

Take Action!

Help us help people with kidney transplants! Ask your Representative to co-sponsor HR 1458, legislation that would extend Medicare coverage of immunosuppressive drugs beyond the first 36 month after transplant. Since we launched this alert last week, we have sent 400 messages to Congress, but health care reform is building momentum, and we need you to act now by telling your Representative to act today.This legislation is one of the key provisions in the NKF End the Wait! Campaign. The bill will help transplant recipients maintain their kidney function, and will allow others to consider a transplant because they know the expensive drugs they need will be available without a time limitation. Organ transplant recipients must take immunosuppressive drugs for the life of the transplant to help prevent the body from rejecting the organ. Currently, Medicare pays for most kidney transplants but covers drugs for only 36 months post-transplant as part of the Medicare ESRD benefit. After that, kidney recipients must pay for immunosuppressive drugs through private insurance, public or pharmaceutical programs or pay out-of-pocket. (Medicare covers drugs without a time limit if the patient qualifies because of age or disability status.) Immunosuppressive drugs are expensive, but the alternative is even more costly. A kidney transplant recipient costs Medicare $17,000 annually. If the kidney transplant fails, the person returns to dialysis at which point, Medicare spends an average of $71,000 per year on a dialysis patient. And quality of life often suffers too. Click here to view the NKF's Immunosuppressive Drug Fact Sheet. Please take a moment to write your Representative today and ask him or her to co-sponsor HR 1458. Share your story, or the story of a loved one, about the experience with immunosuppressive drug coverage.
Thank you!
Jayne Mardock
Congressional Relations Director

Just Some Facts

2009-04-22T11:41:00.001-04:00

Every two hours a person dies from kidney failure.
Twenty-six million American adults have chronic kidney disease (CKD), and millions of others are at increased risk.
The gap between donations and transplants has grown 111 percent since 1998.
In 2009, 78,874 Americans were on the transplant waiting list, while only 16,518 kidneys were donated by both living and deceased donors in 2008.
Please consider organ donation!

Facts courtesy of the National Kidney Foundation.

Bella

2009-02-15T14:39:00.002-05:00

Love Scar 2/15/2009

2009-02-15T14:08:00.002-05:00

Love Scar after 1 year, 1 month

END THE WAIT

2009-02-15T13:49:00.003-05:00

END THE WAIT!
A Multi-Faceted Collaborative Initiative to End the Wait for a Kidney Transplant in the U.S. in 10 Years

http://www.kidney.org/news/end_the_wait/index.cfm

Busy, Busy, Busy!

2009-02-06T15:28:00.002-05:00

I am sorry I haven't posted regularly in months. I have been really busy and have a lot going on.
Here's a little update:
Greg's 1 year check up was wonderful. He is healthy and feeling so much better. We did find out that the amazing Dr. Bashir Sankari is no longer with Charleston Area Medical Center's Transplant Team. He has relocated to Indianapolis to start a new transplant center. If anyone is considering donation near Indy, he is amazing and I would not hesitate to have him as a surgeon.
I am also fine; no problems with my health. Unless I want to count gaining back the weight I was losing! But I'm working on it. Goal is to lose at least 30 lbs. before my birthday; 50 lbs. by the end of the year. I adopted a very athletic new dog, Bella, from the Franklin County Animal Shelter so she will be helping with this weight loss plan. I will post a picture of her and the Love Scar later.
Rachel Widomski update: The man that ran her over last May was sentenced on Tuesday, February 3, 2009, to a total of 15 years. He accepted a plea bargain and was charged with an F3 felony instead of an F2. Had they pursued the F2, he could have been sentenced to 32 years. Something that really bothers me is that this man, Michael Rose, has 4 or 5 prior DUI convictions, yet the state hasn't permanently suspended his license. He should never be allowed to drive again. I am putting the link to Haikuhelp.com back on my site. Those of you able to donate, please do.
I also have some exciting info from a National Kidney Foundation newsletter that I will post after work tonight!
Anyone who needs to contact me, please email me at kdh621@gmail.com. I receive my emails immediately and if I am busy, I can get back to you sooner than if you leave a comment on the blog.
Thanks!

Love Scar 9/29/2008

2008-09-30T00:21:00.002-04:00

Here it is! I'm getting skinnier!!
Steelers Rock!

Diabetes: The Leading Cause of Kidney Failure

2008-09-29T23:43:00.002-04:00

Sorry I haven't posted in quite some time. I have been crazy busy. Here is detailed info about the leading cause of kidney failure. Info is courtesy of lifeclinic.com.
Diabetes is a disease which causes a high glucose level and can cause kidney failure. Kidney failure develops in about 20% of all patients with diabetes.
Diabetes is the most common cause of kidney failure. However, it's also true that most people with diabetes don't go on to have end-stage kidney disease (ESRD).
Early in diabetes, the blood-filtering units of the kidneys are damaged. This means important proteins are lost in the urine. A urine test that measures protein can show beginning diseases. Later in the disease, the kidneys can't remove waste products from the blood.
There are five stages of diabetic kidney disease with the last stage being kidney failure. On average it takes a person with diabetes over 20 years to progress to the end stage. Both types of diabetes, Type 1 and Type 2, can lead to kidney disease. Type 1 is more likely to lead to end-stage kidney failure.About 40 percent of people with Type 1 diabetes develop severe kidney disease and end-stage kidney failure by the age of 50. Type 2 causes 80 percent of the end-stage kidney failure in African Americans and Native Americans. The key to preventing kidney disease in people with both types of diabetes is not smoking, getting regular blood pressure and urine protein tests, and preventing high blood sugar.
Often there are no symptoms of the disease until it progresses to the late stages. When symptoms do appear they include:
Fatigue
Insomnia
Weakness
Vomiting
Swelling
About 40 percent of people with Type 1 diabetes develop severe kidney disease and end-stage kidney failure by the age of 50. Type 2 causes 80 percent of the end-stage kidney failure in African Americans and Native Americans. The key to preventing kidney disease in people with both types of diabetes is not smoking, getting regular blood pressure and urine protein tests, and preventing high blood sugar.

5 Stages of Diabetes

Stage I - The flow of blood through the kidneys increases and the kidneys get bigger. People can stay in this stage indefinitely or advance to Stage II after many years.
Stage II - Small amounts of blood protein known as albumin leak into the urine. This is called microalbuminuria.
Stage III - The loss of albumin and other proteins speeds up. Some patients develop high blood pressure. The kidneys continue to lose the ability to filter waste. Many people are first diagnosed with kidney disease at this stage.
Stage IV - In this stage large amounts of urine are passed through the kidneys and high blood pressure almost always occurs.
Stage V - The ability of the kidneys to filter waste almost stops. Kidney dialysis or transplants are treatment options.
Often there are no symptoms of the disease until it progresses to the late stages. When symptoms do appear they include:
Fatigue
Insomnia
Weakness
Vomiting
Swelling

Ways to prevent diabetes kidney problemsYou can prevent diabetes kidney problems through the following means:
Keep your blood glucose levels under control. Talk to your doctor about your HbA1c test and what your goal should be.
Keep your blood pressure under control (130/85 mmHg or lower).
Have your kidneys checked at least once a year by having your urine tested for small amounts of protein.
Talk to your doctor about being placed on an ACE inhibitor to protect your kidneys.
Have any other kidney tests that your doctor recommends.
See your doctor if you think you have a bladder or kidney infection.
I think it would be a good idea to make sure you have your glucose levels checked once a year, which is normally done at a yearly physical. EVERYONE should see their doctor at least once a year to have the basics checked. Don't wait until you don't feel well, a lot of damage can be prevented if the disease is caught early.
I will also post a new picture of the "Love Scar" tonight.

Focal Segmental Glomerulosclerosis

2008-07-31T17:18:00.005-04:00

The following information was copied from the U.S. National Library of Medicine.

Focal segmental glomerulosclerosis is scar tissue that forms in areas of the kidney that filter certain things out of the body. These areas are called glomeruli. They help the body get rid of harmful or unnecessary substances. Each kidney has thousands of glomeruli.
"Focal" means that some of the glomeruli become scarred, while others remain normal. "Segmental" means that only part of an individual glomerulus is damaged.

Causes
The cause of focal segmental glomerulosclerosis is usually unknown. A small number of cases result from reflux nephropathy. The condition affects both children and adults. Males are affected slightly more often than females, and it also occurs more frequently in African Americans.
Focal segmental glomerulosclerosis causes about 10 - 15% of all cases of nephrotic syndrome.

Symptoms
Foamy urine
Swelling of the body, called generalized edema, from retained fluids
Weight gain
Poor appetite

Exams and Tests
There are no strong clues to the diagnosis on physical examination, other than evidence of edema and elevated blood pressure. Signs of kidney renal failure and associated fluid overload may develop as the illness gets worse.
Tests may include:
Urinalysis
Kidney biopsy
Immunofluorescence microscopy test

Treatment
The goal of treatment is to control the symptoms associated with nephrotic syndrome and chronic kidney failure. For detailed treatment information for those conditions, see:
Nephrotic syndrome
Chronic kidney failure
In general, treatments may include:
Low or moderate protein diet (1 gram of protein per kilogram of body weight per day)
Low fat diet
Salt-free diet
Fluid restriction
Powerful anti-inflammatory medicines to reduce the immune response
Medicines to treat high blood pressure, high blood cholesterol, and high triglyceride levels
Antibiotics to control infections
Vitamin D supplementation
Dialysis
Kidney transplantation

Outlook
Over half of all persons with focal or segmental glomerulosclerosis develop chronic kidney failure within 10 years.

Possible Complications
Chronic kidney failure
End-stage kidney disease
Nephrotic syndrome
Malnutrition
Infection

When to Contact a Medical Professional
You should call your doctor if symptoms develop, especially if there is fever, pain with urination, or decreased urine output.

Prevention
No prevention is known.

Update Date: 5/15/2007
Updated by: Robert Mushnick, M.D., Clinical Assistant Professor, Department of Nephrology, SUNY Downstate Health Center, Brooklyn, NY. Review provided by VeriMed Healthcare Network.
A.D.A.M., Inc. is accredited by URAC, also known as the American Accreditation HealthCare Commission (www.urac.org). URAC's accreditation program is the first of its kind, requiring compliance with 53 standards of quality and accountability, verified by independent audit. A.D.A.M. is among the first to achieve this important distinction for online health information and services. Learn more about A.D.A.M.'s editorial process. A.D.A.M.

My 6th month post-op check up

2008-07-31T17:12:00.002-04:00

Just wanted to update everyone that my test results all came back with everything in normal ranges. I have been lucky with the consequences of my decision to donate. My blood pressure never increased and my only complaint is the itching of the Love Scar. In my next post, I am going to post some info about FSGS. This is the disease that caused Greg's kidney failure. I thought it would be a good idea to spend some time here talking about what causes kidney failure and FSGS seems like a good place to start. If anyone has something they would like me to write about, leave me a comment and I will do my best to find information for you.

Medicare Bill Passed By Senate!!

2008-07-10T19:27:00.003-04:00

Yippee, the Senate approved the Medicare bill passed by the House in June! It is veto-proof with a 69-30 vote!! I am pasting the info from an email I received from the AMA Patient's Action Network below:

Great news! On Wednesday, July 9, the U.S. Senate passed H.R. 6331, the “Medicare Improvements for Patients and Providers Act of 2008,” by a veto-proof majority of 69-30.

Eighteen Republican senators joined Senate Democrats to make this a truly bipartisan process. See how your senators voted here, and send an e-mail to say thank you for voting on behalf of patients and the doctors who care for them.

Thank you so much for your tireless efforts. This was a monumental grassroots effort that really turned the tide, and we proved that together we are stronger!

The bill must now be signed into law by President George W. Bush, who has signaled on more than one occasion that he intends to veto it. However, given the fact that the payment cuts have already occurred and that the bill passed both chambers of Congress with the two-thirds majority needed to override a veto, there is some reason to question the next steps by the White House. Of course, we will keep you apprised as we learn more.

Again, many thanks for your help in this effort!AMA Patient's Action Network. Please take some time to thank your congressional representatives.

Some Facts About Chronic Kidney Disease

2008-06-27T14:08:00.003-04:00

I thought it might be helpful to post some facts about chronic kidney disease. If left untreated, this will lead to end stage renal failure. To live with end stage renal failure requires either dialysis for life or transplant.
I urge everyone to be checked for kidney disease. It only requires a simple blood and urine test. Chronic kidney disease can be treated and is manageable. Don't allow it to proceed to kidney failure. The following facts are courtesy of the National Kidney Foundation.

The Facts About Chronic Kidney Disease (CKD)
26 million Americans have CKD and another 20 million more are at increased risk.

Early detection can help prevent the progression of kidney disease to kidney failure.

Heart disease is the major cause of death for all people with CKD.

Glomerular filtration rate (GFR) is the best estimate of kidney function.

Hypertension causes CKD and CKD causes hypertension.

Persistent proteinuria means CKD.

High risk groups include those with diabetes, hypertension and family history of kidney disease.
African Americans, Hispanics, Pacific Islanders, Native Americans and Seniors are at increased risk.

Three simple tests can detect CKD: blood pressure, urine albumin and serum creatinine.

More than 500 million persons worldwide - 10% of the adult population - have some form of kidney damage, and every year millions die prematurely of cardiovascular diseases linked to CKD.

Globally the most common causes of CKD have been nephrotic or inflammatory diseases of the kidney, infections, obstruction in the urinary tract and inherited disorders like polycystic kidney disease. This is changing in both developed and developing nations towards diabetes and hypertension, which are also the most common causes of cardiovascular disease (CVD).

If you link to the National Kidney Foundation website, www.kidney.org, there is a link for free screening tests. This means there is absolutely no reason not to be tested. It's free!

Love Scar, 5 months post-op

2008-06-24T17:04:00.003-04:00

Sorry, it is a little dark but I think it looks like it is healing nicely and maybe fading a little!

H.R. 6331 in the House of Representatives today

2008-06-24T16:55:00.002-04:00

I received an email yesterday from the American Medical Association. I am pasting it below. It relates to stopping the cuts in Medicare to patients and providers. This is extremely important for people who have received a transplant and are not able to go back to work immediately. Please sign up with the AMA to stay informed of this action. Also, take action with your local representatives!!

Dear Kelly:
As we mentioned in our last Medicare update, “the Medicare issue is still very much alive, but the situation will remain fluid and potentially change quickly.” Well, that prediction is coming true!
The U.S. House of Representatives plans to take up a bill tomorrow—on Tuesday, June 24—to stop the Medicare cuts that are coming on July 1.
Please call Representative Tiberi NOW and urge a YES vote on H.R. 6331, the “Medicare Improvements for Patients and Providers Act of 2008.” Use our hotline at (888) 434-6200.
There is not enough time for e-mails—phone calls are the only way to make your voice heard in time!
If you’ve never called a congressional office before, check out our guide to “Communicating with Congress.” To see how the cuts will impact patients and physicians in your state, click here and pull down your state.
Thank you for your tireless work on this issue. Your participation in the Patients Action Network is very important and deeply appreciated!

Feeling Fearful

2008-06-19T12:33:00.004-04:00

As my 37th birthday quickly approaches, I am feeling a little frightened. It seems that so many friends close to my age are having serious health problems.
For instance, last year, Greg was diagnosed with end stage renal failure at the age of 41, my friend Fred had a serious heart attack at age 42, Amy, 35, had a scare with non-Hodgkin's lymphoma and my friend Scott's wife died in her early 30's. In December, my Aunt Joyce died from cancer, she had lung cancer and a brain tumor. She was in her 60's, smoked all of her life and had been ill for sometime so this wasn't really unexpected.
I recently got news that Scott (mentioned in above paragraph) now has a brain tumor the size of a golf ball. He is 39. The tumor caused him to have a stroke and he was hospitalized for 5 days with little memory of that time. He was scheduled to have brain surgery on June 16 but his surgeon has decided to try a different procedure tomorrow morning. Please keep him in your thoughts and prayers.
One other note, Amy and Scott are smokers. I have been begging them to stop. Are a few cigarettes really worth the horrible health problems they cause? Are they worth your life? So to them and any other smokers, PLEASE STOP SMOKING!!!

Greg's Lab results for today

2008-06-02T17:24:00.006-04:00

Greg's labs for today are as follows:
Creatinine- 1.8
BUN- 19
Glucose- 96

His white blood count is 3.2 and is slowly increasing. This is a good sign.

I am having issues with the "Love Scar." It has been itching like crazy for the past couple of weeks. I have been moisturizing like a mad woman but it still itches! The last time it was itching this much was during the first month or so after surgery then it stopped. If anyone has ideas that will keep me from scratching, I would be forever greatful! I have tried hydrocortisone cream, lots of lotion, including cocoa butter and am still using Mederma. If any of you happen to visit me at work and see me rubbing at my left side, you'll know why : )

I am moving this coming weekend. I have the Uhaul reserved now I just need to recruit some friends to help! Friends, let me know if you can help me! I will supply snacks and some beverages if necessary for bribery.

Rachel Widomski Update

2008-05-25T17:44:00.002-04:00

I am going to enclose the link to my friend's website to update all of you on Rachel. She is a little more eloquent than I and she has all the information already written! Thanks for letting me "steal" your update, Lisa!
Please help if you can!

www.restaurantwidow.com/2008/05/an-update-on-ra.html

Changes in Greg's Meds.

2008-05-25T17:20:00.002-04:00

Last Monday, the doctors told Greg to quit taking his Cellcept (an anti-rejection drug) for two days. They have been experimenting with the dosage so he will only be taking the amount he needs. Anti-rejection drugs have some very nasty side effects and are hard on your body so it is important to find the proper dosage. Well, his white blood cell count went up and they don't want that as it is a sign that his body is fighting the kidney. So he is now taking 500mg. of Cellcept twice daily. They will continue to adjust this according to results of his twice weekly lab work. He also is still taking Prograf (another anti-rejection drug) prednisone and an assortment of other drugs. He is down to about 22 pills a day after starting with over 40 right after surgery. This has been hard for him as he was one of those people who didn't like to take medication unless absolutely necessary.
On the flip side, I feel like I am slowly gaining back more energy. I have been a little fatigued since surgery but it seems to lessen each month. I hadn't really noticed that I was tired because I am always on the run, but I have noticed that I need less sleep and can live without my afternoon nap. I think I overlooked the fatigue because I actually enjoy sleeping! Especially when it is dreary outside and I think we had a week of straight rainy, chilly weather. I find that perfect for napping! All of my vitals are excellent so the fatigue is just a consequence of the trauma incurred from major surgery. I am still happy that I donated and when asked if I would do it all over again, the answer is still yes. It amazes me each time someone finds out that I donated and they are just in awe that anyone would do something so selfless. It wasn't entirely selfless. I can't imagine my life without Greg, he is the closest person in my life. I just couldn't bear the thought of him enduring dialysis for the rest of his life when I could do something to help. To me, the decision was easy to make. So for those of you who think I am some kind of saint, not really. I have my moments just like everybody else.

Trust Fund Established for Rachel Widomski

2008-05-23T15:54:00.002-04:00

I am enclosing a link to an article with information about a trust established for Rachel Widomski at Huntington National Bank. It includes information for mailing donations.
www.vindy.com/news/2008/may/23/trust-fund-established/

Haikuhelp comment

2008-05-18T23:33:00.003-04:00

Please be aware that this site will benefit both victims, the owner, Ms. Liu and Rachel. Also, Rachel is in critical condition, not serious as posted.

A Sad But Unrelated Note

2008-05-18T02:52:00.005-04:00

This has nothing at all to do with transplants.
Thursday evening, there was a hit and run at the restaurant (Haiku) across the street from the restaurant that I work at. Michael Rose, a patron at the bar, decided to "dine and dash." He had a bar check for over $100. His server, Rachel Widomski and owner, Julie Liu, followed him out of the restaurant to confront him about his tab. He purposely backed over them twice and also hit another patron of Haiku. Rachel is now in critical condition at Grant Hospital in Columbus, OH. Mrs. Liu is at OSU Hospital in serious condition. The other person was treated at the scene and released.
Ms. Widomski will never walk again because this idiot backed over her twice. She had surgery to repair her liver. She was placed in a drug-induced coma until she is strong enough to handle more surgery. There is blood in her lungs. She was to have back surgery tonight to repair a spine broken in 2 places. Only one break can be repaired, the other cannot be fixed. Then she faces yet another surgery. She is a student, 26 or 27 years old and will have major medical bills.
As part of the server community in the Short North area of Columbus, I feel the need to do something to help Rachel. She is the best friend of one of my coworkers. We are planning on organizing a couple of fundraisers and will have a website set up soon for any donations to help with the medical bills. We will be meeting with a local bank on Monday to set up a fund for her. I will post more info and links as we get it all together. If you can give, please do. In the meantime, please keep Rachel and Ms. Liu in your prayers.
Michael Rose is 43 years old with two DUI convictions. He was awaiting trial for theft charges when this occurred. He turned himself in earlier this evening but this does not bring peace to Rachel and her family. His behavior is an atrocity and hopefully he will pay for this crime.
Here is a link to the story in the Columbus Dispatch: http://www.dispatch.com/live/content/local_news/stories/2008/05/16/haiku.html?sid=101

Lab Updates

2008-05-12T18:05:00.002-04:00

Everything is fine with my kidney function. The trace of protein was caused by my body producing more yeast in response to a change in my birth control pills. It is not enough yeast for an actual yeast infection but I am going to change birth control pills back to my old ones.
Greg's creatinine is 1.8 for the day. His BUN was a little high but nothing major. His blood glucose level is 101 and he no longer has to take insulin shots. His sugar was high as a reaction to his prednisone, Prograf and Cellcept medications. They were causing it to go from one extreme to another so he briefly had to take insulin shots to get it under control. He will now be taking a pill to keep it regulated while taking all the anti-rejection meds.

May 5 Updates

2008-05-05T17:43:00.003-04:00

Well, there is a trace of protein in my urine so I am repeating the test tomorrow. They are going to measure protein ratio and creatinine clearance. I am not really too concerned about it. There were trace amounts of protein in my urine in December and I found out it was caused by some medications I was taking. It cleared up when I stopped the medication so I am going to see if my Dr. will change my prescription. My blood pressure reading today was 106/64 and my blood work was fine.
Greg's creatinine is at 1.8 today. They lowered his Cellcept dosage because it was causing his white blood cell count to be too low. He is down to 22 pills a day after starting with about 42 immediately after transplant. He is also taking insulin shots for the time being.
I urge anyone who is considering living donation to check out the message boards on the living Donors Online website. You can link to it through my site. It is a great source of information and support. It was a huge help to me to be able to read stories of others and ask questions of people who have been through the transplant process.

Waiting for Test Results

2008-04-21T20:02:00.003-04:00

I had lab work to test my kidney function today. It is just a blood and urine test and I should know the results by Wednesday. I am still feeling very good and haven't had any issues related to donating.
Greg's creatinine is ranging from 1.7 to 1.9 and the doctors said this is fine and normal until his body adjusts. They are also still adjusting his meds and that causes some fluctuation. This range is much better than when he was diagnosed and his creatinine was over 14! His blood sugar has gone up recently (over 300). This is not great news but it happens. His father is diabetic and although Greg had no sign of diabetes before the transplant, some of the meds he has to take have no doubt played a part in this. It went up after his prednisone and Prograf dosages went down. He now checks his sugar 3X/day and is controlling it with diet and exercise. He was told by the doctors that he is to walk for 45 minutes daily and that will help. They haven't come right out and said that he is now diabetic but I think that by having him monitor his blood sugar they think it could happen. Other than that, he is doing well!
I am pasting some info below that I copied from the Living Donors Online site about a study to assess long term outcomes after living kidney donation below. It is interesting and I would have signed up for it if it was offered before my surgery. Anyway, it is something to think about if you are considering donation in any of the states mentioned.

If you are a potential living kidney donor who will donating in Minnesota, Maryland, Iowa, Ohio, or Northern California, the following study may be of interest.
The Assessing Long Term Outcomes after Living Kidney Donation (ALTOLD) study is looking for volunteers who are planning to donate a kidney, and are willing to participate in a study to closely examine the effects of kidney donation on health.
To participate, you must be considering donation at one of the following transplant centers: -- University of Minnesota Medical Center-Minneapolis, MN-- Mayo Clinic-Rochester, MN-- University of Maryland-Baltimore, MD-- Johns Hopkins Hospital-Baltimore, MD-- University of Iowa-Iowa City, IA-- Hennepin County Medical Center-Minneapolis, MN -- The Ohio State University Medical Center-- University of California San Francisco-San Francisco, CA
The Assessing Long Term Outcomes after Living Kidney Donation (ALTOLD) study is looking for volunteers who are planning to donate a kidney, and are willing to participate in a study to closely examine the effects of kidney donation on health.
What we know:•The short term risk of dying from surgery is about 3 in 10,000.•Studies to date indicate that kidney donors are generally healthy.•Studies may have failed to detect small effects of donation on the risk for kidney and heart disease.
What we wish to learn:•Whether kidney donation may affect kidney function over the years.•Whether kidney donation may affect risk factors for heart disease, diabetes, and other problems.
What is the ALTOLD? ALTOLD will compare 200 kidney donors with 200 two-kidney controls for 3 years. The study will do very accurate measurements of kidney function and risk factors for heart disease and strokes. ALTOLD is being carried out at 8 centers in the US and it is sponsored by the National Institutes of Health.
What is involved?
•Donors and their controls have 5 half-day visits to the research center over 3 years.•During each visit a medical check-up, an accurate test to measure kidney function, and blood tests to assess the risk for heart disease and strokes are done.•At the end of 3 years blood pressure is measured at home for 2 days with an automated device.•Some may have additional studies, if they choose.•Abnormal test results are given to participants, if they choose.•The study will pay each participant $150 per visit, plus travel costs.
If you are interested in participating in this study, please contact the study coordinator nearest you:
University of Minnesota Medical Center-Minneapolis, MNAnn West University of Minnesota 420 Delaware Street SE MMC 736 Minneapolis, MN 55455 Telephone: 612-625-5424 Email: annwest@umn.edu
Mayo Clinic-Rochester, MNHeidi TorgersonMayo Clinic Transplant CenterTelephone: 507 538-2664
University of Maryland-Baltimore, MDDenyse BreaultUniversity of Maryland-School of MedicineDivision of Nephrology22 S. Greene St., Rm N3W 143Baltimore, MD 21201Telephone: 410-706-4111Email: dbreault@medicine.umaryland.edu
Johns Hopkins Hospital-Baltimore, MDKim KahanTelephone: 410-502-1556Email: kkahan1@jhem.jhmi.edu
University of Iowa-Iowa City, IAHeather Ann Muster, MDDivision of NephrologyUniversity of IowaIowa City, IA 52242Telephone: 319-356-3500Hennepin County Medical Center-Minneapolis, MN Lisa BerndtEmail: Lisa.berndt@hcmed.org
Ohio State University-Columbus, OHThe Ohio State University Medical CenterComprehensive Transplant Center Clinical ResearchRoom 243 Atwell Hall 453 W. 10th Ave.Columbus, Ohio 432101-800 293-8965
University of California San Francisco-San Francisco, CAVeronica CarneroTelephone: 415-353-1592Email: carnerov@surgery.ucsf.edu
Best wishes,Jennifer MartinNational Kidney Foundationjenniferm@kidney.org http://www.livingdonors.org/

National Donate Life Month

2008-04-05T14:09:00.002-04:00

Just another reminder to fill out those organ donor cards. Blood donation would also be a good thing to do, if you are able, in honor of National Donate Life Month.

Greg's creatinine is at 1.7 and his Prograf and prednisone dosage amounts have been reduced. He is averaging about a 5lb./month weight loss since the transplant and the doctors say he is doing very well.
I am going to have my kidney function tested next week. It consists of 2 vials of blood and a urine test. Will post results when I have them. My current blood pressure is 108/62. I have been lucky with my blood pressure as most donors see an increase but mine remains low.
I have also started jogging. It feels a little weird when my left foot impacts ground. I think I can feel everything moving around where my left kidney used to be! It isn't painful, just a little strange.

Senate Bill S.2320

2008-04-01T14:43:00.002-04:00

Please ask your senator to support this bill. It extends Medicare coverage for immunosuppressive drugs.
I am copying an email sent to me from the National Kidney Foundation. You can link to their site through my blog and sign up to send your senator an email from there.

Tell Your Senator to Support S.2320
Extend Immunosuppressive Drug Coverage

Take Action!

Help us build support for legislation that will extend Medicare coverage for life-saving immunosuppressive drugs for the life of the kidney transplant. If passed, patients could continue to receive these drugs under Medicare Part B with the usual premium. This is a big step forward to preserve the life of kidney transplants.
Organ transplant recipients must take immunosuppressive drugs for the life of the transplant to prevent the body from rejecting the organ. Currently, Medicare pays for most kidney transplants but covers drugs for only 36 months after the transplant as part of the Medicare ESRD benefit. After that, kidney recipients must pay for immunosuppressive drugs through private insurance, public or pharmaceutical programs or pay out-of-pocket (Medicare covers drugs without a time limit if the patient qualifies because of age or disability status).
Immunosuppressive drugs are expensive, but the alternative is even more costly. Medicare spends $17,300 per patient to maintain a transplant, but if the kidney transplant fails, the person returns to dialysis at a cost of over $68,600 per year to Medicare. And because dialysis is physically draining, quality of life often suffers too.
Similar legislation has been introduced in the House of Representatives, and Take Action volunteers sent over 1100 letters of support in August and September. Now we need your help to build Senate support for this important legislation.
Click here for more information or here to read S. 2320 text.
Please take a moment to write your Senators today and ask them to co-sponsor S. 2320 . Share your story, or the story of a loved one, about the experience with immunosuppressive drug coverage. Thank you!

Links For Gifts for Donors/Recipients/Transplant Teams

2008-03-22T00:28:00.003-04:00

Just thought I would list some great links found on the LDO site for gifts. These should be helpful to anyone who would like to find a gift for their donor, recipient or transplant team.

http://www.shareyourlife.org/
http://www.transplantawareness.org/
http://www.kidneyjewelry.com/
http://www.visualanatomy.com/

Greg's Labs 3/17/08

2008-03-19T15:47:00.002-04:00

Greg's creatinine is at 1.9 again this week. They have taken him off of Lasix because it was causing him to cramp from being dehydrated. This is good because it means the kidney is functioning very well!
I will have labs done again next month to make sure that my kidney is still functioning properly.
April 16 is National Transplant Nurses Day. I am sending some kidney shaped cookies to our nurses. If you know a transplant nurse, be sure to do something nice for her on this day!

Greg's Creatinine Dropping

2008-03-10T19:59:00.005-04:00

I know this site is supposed to be about my experience, but nothing much going on with my recovery. I think I am fully recovered, it will be 8 weeks Friday and I have no pain or problems.
I kind of feel like what goes on with Greg is part of my recovery so I will probably continue to update his condition whenever I have news. As I stated in my last post, his creatinine had increased slightly. He saw the transplant surgeons last Thursday and they reduced his Prograf and prednisone dosages. His labs today showed that his creatinine dropped back down to 1.9. Hopefully, it will keep dropping. We will see when he has labs again next Monday.
Next month is National Donate Life Month. What are you going to do to make a difference? Fill out a donor card!!
The following is posted on www.organdonor.gov:

Make it known: I want to be a donor
Register with your State Donor Registry, if available.
Say YES to donation on your driver's license.
Tell your family, friends, physician, and faith leader that you want to be a donor.
Fill out and sign a donor card, have it witnessed, carry it with you.

Update on Greg's Creatinine Level

2008-03-06T15:05:00.002-05:00

Greg's appointment this morning went well. He has lost 5 more pounds since his visit last month which is great. The doctors said his creatinine was going up because of his prednisone and Prograf (an anti-rejection drug). They have lowered the dosage of both which should get his creatinine level back on track. They assured him he is not having a rejection episode and, of course, I got the "don't worry about me" lecture.
When will this man understand that it is perfectly normal for me to worry about this and to check to see how he is doing? I am really not trying to bother you, Gregory, but I can't just act like I don't care what happens to you.
I'm going to stop ranting now or it could go on for pages and pages!

Greg's Creatinine Level Up Slightly

2008-03-05T01:43:00.003-05:00

I talked with Greg Tuesday and I am nervous because his creatinine level has increased. It was 1.8 last week and is now 1.9. It is not much of an increase and he has no signs of rejection. He spoke with the post-transplant coordinators and was told that this is normal while meds are being adjusted. He has a follow-up at the transplant center on Thursday morning and is watching very closely for any signs of rejection. I am more nervous than he is.
Signs of rejection include: fever, swelling of feet and ankles, elevated BUN and potassium, decreased urine output and elevated creatinine levels.
I will let everyone know more about his condition as I hear more. Please pray for him!
I informed him that I don't allow his body to reject my kidney and anyone who knows me well would laugh and say that they would be scared to reject my organs, too.
April is National Donate Life Month. Fill out those donor cards!!

Just a Little Off Topic Note for Everyone

2008-03-04T13:45:00.002-05:00

For those of you in Ohio, Vermont, Rhode Island and Texas, GO VOTE!!!

Back to Work Part 2

2008-03-02T22:40:00.004-05:00

Well, I worked 2 shifts last week and made it through both of them without trouble. I didn't have pain and my legs and feet weren't even sore after not working for 7 weeks! I must admit I buy really good, supportive work shoes and I actually wore the anti-embolism socks from the hospital while at work. Those socks made my legs feel awesome while at work. Usually, they feel tired but I was amazed at the difference I felt wearing these. I am now a firm believer in support hose no matter how ugly they may be! No one sees my legs at work so if I want to wear ugly support hose, I will!
Greg (my recipient) goes back for a second follow-up with the transplant center this Thursday. I will keep everyone posted of his results. He is doing remarkably well at this time.
Nothing much to report about me. I am thankful that I haven't had any horrible issues to deal with. I still am dealing with the itching of my Love Scar but that is nothing major.
Best wishes to all you donors and recipients out there!

Back to Work!

2008-02-26T01:02:00.004-05:00

Believe it or not, I am excited to go back to work tomorrow! I haven't felt that way about many jobs in the past, so this is a pretty cool feeling for me : )

I talked with my recipient today for an update on his creatinine level and it is down to 1.8 (from 1.9 last week). Hopefully it will drop a little more and then maybe I will quit constantly pestering him about how he is feeling. Gregory, if you are still reading this, I am really not trying to drive you crazy! I just love you more than anything and always will. That is another story!

I am doing very well. I almost feel like I didn't have major surgery 5 weeks ago. I know that most people don't recover this quickly and I believe it was because I was very healthy prior to the surgery. I also think this is one of the reasons I was put on this planet. Can't explain it, just knew it would work out well.

I am posting a new picture of my incision, now known as my "Love Scar." I don't know if it looks any different than the first 2 I posted, but I wanted to see.

Oh, How I Itch!

2008-02-22T12:29:00.002-05:00

I am dying to scratch the area of my incision! It is incredibly itchy and no amount of hydrocortisone cream seems to help for long. I know this means it is healing but it is really itchy: ). I actually wake up in the middle of the night because it itches. I am sure this is normal. If anyone has suggestions to help me out, I sure would be appreciative.
I am keeping the area well moisturized, use Mederma 4 times a day and am applying hydrocortisone cream when it starts itching. Someone please help!

Thanks!!

2008-02-18T00:58:00.004-05:00

I just wanted to thank those of you who have left comments and emailed me with your wishes for my recovery. It means a lot to know that so many people care.
Also, I hope I have been helpful to those of you who have emailed me questions about donating. I know that the transplant teams provide you with information, but I think talking to someone who has been through the whole process can make you feel more comfortable with your decision. Just reading through the forums on livingdonorsonline.org was a big help to me.
It is officially 1 month since surgery and we are both doing very well.
If anyone would like to send me stories of their transplant experience, please do.
And, finally, to any new donors, welcome to the Kidney Club!

4 Weeks Post-Op Tomorrow

2008-02-14T22:40:00.003-05:00

Just wanted to let everyone know that tomorrow is 4 weeks since my donation and I feel stronger each day. I am no longer bloated and the pain is minimal. I have noticed that after I eat, there is some pressure against the area of my incision which causes a little pain that feels like the area is stretching. It isn't bad and I imagine that after I am completely healed, it will go away.
My recipient saw his nephrologist today and was told he is doing very well. This is basically what the transplant team also told him. He says he feels like a new person and I am so glad that I could help him. He has lost over 30 pounds since the surgery and is still losing. It is a big difference from when he was on dialysis. For anyone who would like to talk to a recipient, if you email me, I can put you in contact with him and he will gladly tell you of his experience and answer any questions you may have.
I am returning to work the week of Feb. 25th. I am going to work 2 shifts that week (I work in a restaurant) so as not to overdo it. I will see how I feel and then work my way back up to my usual 4 shifts a week. I am actually looking forward to going back to work as I am stir crazy and almost out of the money I saved for the time I was off.
If anyone wants to ask me anything about my experience, feel free. I really want to share it and maybe help someone going through the same process.
Happy Valentine's Day!!

Please write your Congressmen for support!

2008-02-09T00:39:00.000-05:00

I don't want to get political here, but we need to force Congress to provide better Medicare coverage for transplant recipients. Please check out the articles in the link I have provided. The National Kidney Foundation also has a group to join to support increasing funding and getting legislation passed. Please support this and write Congress!
">Link http://www.kidney.org/news/pubpol/issues_legislation.cfm

All is Well

2008-02-08T15:58:00.000-05:00

It has been a busy couple of days. My first follow up was yesterday and Dr. Sankari told me everything looked great. I am healing well, vitals were great. My blood pressure was 113/54 which is normal for me.
My tenderness is almost gone and I actually was able to lie on my left side while sleeping last night. It felt weird at first but, after I was settled, it felt ok.
They also took blood and urine yesterday to test me for renal insuffiency. They will call me if there is a problem. My follow up appointments are scheduled at 3 months, 6 months and 1 year post-op. After the first year, I will go once a year for 2 years. This is all still covered by the recipient's insurance. The government requires the transplant centers to supply them with this information to make sure they aren't accepting organs from people who should not donate.
My recipient was also checked out yesterday. His creatinine level is still dropping (at 2.2 yesterday) and all of his other numbers are going up and down like they want. His meds are still being adjusted and they have some side effects but he says it is all worth it. This morning, he had his perma-cath removed and that made him extremely happy. It was installed in his jugular last may for dialysis until they could put in his fistula. He really hated it and is glad it is gone. He had the fistula done 2 times (first one collapsed). By the time the second one was mature enough to use, we had our transplant date and they decided to leave the perma-cath in to use as a main line during surgery.
I also want to ask for prayers for a friend from Living Donors Online (beandonor). Her brother experienced a rejection episode last week. He has pulled through but it was a trying time for them.
Also, we met a man yesterday at CAMC in Charleston who is receiving a kidney from his sister. Keep them both in your prayers as well. I didn't get his name but I did give him my email for his sister to contact me.
I am going back to Columbus on Sunday and will return to work the week of February 25.

Pictures of My Incision

2008-02-05T01:45:00.000-05:00

My steri-strips were removed by my recipient's home care nurse today. It feels so good to have them gone! I think I itch less without them. Thought I would post a picture for everyone to see.

Follow-up #1

2008-02-02T15:10:00.000-05:00

All went well at the follow-up appointment this past Thursday. G's numbers are looking very good. He will have his sutures removed next Thursday (which is my first follow-up).
They are constantly adjusting his meds. but it will take time to get them exactly right.
The hardest part is still sleeping, I am dying to be able to lie on my left side again!
I sometimes get what feels like a shooting pain in the area where my kidney used to be. I have been told this is because the nerves are getting feeling back. It isn't a bad pain. Just a little weird.
I have been monitoring my blood pressure and it is staying around 113/65, which is a good sign.
My energy level increases a little each day. I still get tired if I overdo it so I am being cautious.
I can't wait to go back to work!

My Recipient's 1st Follow-up

2008-01-30T23:47:00.001-05:00

Hi, all. Just a note that my recipient's first follow-up since surgery is at 7:30 tomorrow morning. All of his numbers look good so far and some are still dropping. They are working at adjusting his meds which will take some time. Keep him in your thoughts and prayers.
I would also like to ask that all of you keep someone else in your thoughts and prayers. I don't know his name, but I have a friend emailed me about him. He is a reader of her blog (http://www.restaurantwidow.com/ for all you foodies out there) and had a kidney transplant in Columbus, Oh on Jan. 15. His donor was his best friend. When they opened up the donor, they found cancer on the kidney to be donated. It was a type that doesn't spread quickly so they removed the cancerous area and transplanted anyway. Please keep both of them in your thoughts and wish them well.
As for me, pain is hardly noticeable, still mostly when trying to sleep or if I stretch too much. (I know, that sentence is a grammatical horror but I don't really care :). I must admit to sneaking out to go to the store and to Dairy Queen today. Driving wasn't too bad and I waited 1 1/2 weeks instead of 2. I didn't go far and don't think sitting in the car for more than 15 to 20 minutes would feel very good right now. I know, I should have waited but I was going stir crazy and needed to see other human beings and ice cream made me happy!
I will try to update about the follow-up appointment sometime tomorrow.

Can't Sleep

2008-01-28T01:17:00.000-05:00

As those of you reading this blog know, I am one week and 2 days post-op. I have everything caught up to the day that I was released from the hospital and now I will fill in the rest of this past week for you.
I do have some pain, some days it is almost unnoticeable and on others it hurts. It isn't anything unbearable, just sort of annoying. The great majority of it has to do with sleeping. I am just now able to sleep on my right side on top of pillows. Sleeping on my back was more painful and I seem to move less when on my side. I will praise the day that I can roll on my stomach comfortably! I took the advice of some others who have donated in the past and invested in body pillows. It really helps to sort of surround yourself with your bed pillows, support your back with one and I keep a body pillow on each side. The rest of the pain seems to come from the inside and it just feels like the muscles that were cut through are healing. Again, it isn't unbearable but annoying.
Itching has been driving me nuts this past week. My incision is healing :), but boy would I love to scratch it! I am trying to figure out how to deal with the itching but no good ideas yet. As soon as my steri-strips fall off, I plan on using lots of cocoa butter and Neosporin which hopefully will cut down on ther itching.
My appetite is almost normal again. I have been trying to drink a ton of water and eat high fiber foods because you really want to avoid constipation after you donate. Your surgeons will talk to you about that and more than likely will suggest using colace for a while.
I am walking a little more each day. I aim for 2o minutes at least 3 times a day but some days you just don't feel that strong. I do what I can. My energy level is slowly increasing so most days I can make my walking goal. Just don't overdo it. You also don't want to stay in bed all the time. It weakens your body and will make your recovery period longer. Walk as much as you can tolerate but you aren't training for a marathon.
If anyone has questions that you would rather not post, please email them to me at kdh621@gmail.com and I will get back to you as soon as possible.
Good night!

Monday: Released from the hospital

2008-01-26T23:12:00.000-05:00

Ok, I got to leave the hospital today. They removed my pain ball (no more tubes!), took some blood for labs, introduced me to the post-transplant coordinators and gave me a ton of discharge instructions. No driving for 2 weeks, no driving while under the influence of Percocet, no lifting for 6 weeks, get plenty of rest and did I say no lifting?
Yes, I was ready to leave but I wanted to stay with "G." The doctors said he would be ready to leave Wednesday if he kept doing so well. Since sleeping in chairs would have been impossible for me, I left.
The car ride home was painful. I felt every bump. If you find yourself in this position, I suggest padding your car with pillows.
"G's" parents brought me home. Along the way, we stopped at Kroger so I could fill my prescription and get the other things the doctors told me to buy. I also bought food to make dinner.
Upon entering the apartment, I took 2 Percocet and proceeded to cook dinner. Apple butter and cider pork chops, apple cider rice with pecans and some spicy sauteed spinach. It felt good to eat decent food with flavor again. Next, I went to sleep with a ton of pillows.

Sunday, January 20

2008-01-26T22:46:00.000-05:00

Wow! I was up for my morning walk and ran into one of my surgeons making his rounds. He told me I could go home that day if I wanted because I was doing so well! He told me that most people couldn't get out of bed so quickly and this was what was helping me to recover so quickly. I never imagined that my inability to be still for more than five minutes would pay off so well. He removed my IV line (not used since my last round of antibiotics Saturday morning) and agreed to get rid of the heart monitor that had to go everywhere I went. I asked about the pain ball, but he suggested that I leave it in for another day. 2 out of 3 wasn't bad! I was losing more wires and tubes and that made my day.
I decided to stay another night because I still needed help getting in and out of bed and also had visitors coming from Columbus that evening. I also wanted to be able to check on "G" whenever I could :)
I spent most of the day walking around the hospital. My pain level was maybe a 3 and I was ready for real food.

January 19: The day after

2008-01-26T22:25:00.000-05:00

I already explained the morphine scare, but I should probably finish up my Saturday in the hospital.
After walking around for about 20 minutes, I went back to my room. I was still not taking any pain meds, so I was a little ucomfortable. The hardest thing was to get in and out of bed. That was incredibly painful! I finally figured out sometime Sunday morning that it was easier to climb in on my knees near my pillows, then roll slowly onto my back and scoot up as high as I could. Until I figured that out, I pretty much needed help getting in and out of bed.
The day was long. My catheter was removed and that was like heaven, being able to pee by myself! They kept trying to feed me a liquid diet (jello, broth and other nasty stuff) but I really had no appetite. I started a soft diet at lunch (flavorless mashed potatoes, carrots, something trying to pass for pudding, and meatloaf). I ate a little of everything but the meatloaf and it made me queasy. Dinner would be back to soup broth!
I have to admit, this was the most painful day that I spent in the hospital. A great deal of the pain came from being in an uncomfortable hsopital bed with bad pillows. I started taking Percocet that evening and that helped.
The 1st, 2nd and 3rd shift nurses were great. My 3rd shift nurse from Friday night was replaced by a wonderful woman named Odessa and I had no more issues with nurses for the rest of my stay.
"G" would be brought up to this floor today after spending 24 hours in ICU. According to everyone else, whenever they came in our rooms, the first question asked was how was the other one doing. I would be greatly relieved to see for myself that he was doing as well as everyone kept telling me. Surprisingly, he ended up in the room next to mine and we got to visit with each other when we could. It felt really good to see that he was doing well. It made any thing I went through worth it just to see him doing better than he had in months. Seeing him on dialysis 3x week was not only hard on him, but also on me. It tore me up emotionally to think that he would have to do this for the rest of his life.
A little note for Branden in case he is reading: thanks for taking care of your "other mother." I couldn't have done it without you there :)

Morphine Scare!

2008-01-26T21:32:00.000-05:00

When this happened I was in my room at the hospital. I was feeling pretty good at the time and they had explained that the morphine pump would only release so much each time I hit it. It also had a lock on it and I couldn't dose myself repeatedly. Cool, I could control my pain without calling for a nurse!
I remember deciding to take a nap as I felt exhausted (this is probably a normal feeling after major surgery, lol). I thought that I would hit the morphine pump one time so I would be able to sleep without pain. I drifted off to sleep.
I woke up several hours later and there were what seemed like 50 people standing in my room staring at me! This freaked me out. I asked what was going on and apparently when I went to sleep, it was a very deep sleep. Almost coma-like. The nurse had trouble waking me and I got really pale and my lips turned white. I was more freaked out after they told me all of that. I just thought I took a nap. Anyway, it turns out that I am allergic to morphine and this was how my body reacted. It slowed my heart rate down a lot.
I remember calling the nurse after I hit the morphine pump because I felt like I was having a hot flash and was dizzy. My doctor had the morphine removed immediately, but enough had gotten into my system for me to have a bad reaction. Because of this reaction, I had to wear a heart monitor the entire time I was in the hospital. They were just being cautious but I assure you, I have no heart problems and was tested thoroughly before surgery. What a way to find out you are allergic to something!
I was afraid to sleep that night and "G's" son spent the night in my room to watch me because I refused to be left alone. I was terrified and refused any more pain meds until the next evening.
Mu nurse that evening (she will remain nameless) was not the greatest. My catheter was not draining properly and it leaked across my leg a couple times that night. When I called for her to check it, both times, she said it was fine and not leaking. Can you please explain why I felt pee trickling across my leg? I called for a nurse at about 3AM to check it again because I felt like I really had to pee. If you have ever had a catheter, then you know that you don't even realize when you are peeing and should not feel like you need to go. She answered my call, said ok and no one ever came. By this time, I was very angry and would have climbed out of my bed and killed her if I was able. At shift change, my new nurse checked the catheter, realized it wasn't draining and fixed it.
I saw one of my surgeons later that morning and he agreed to remove my catheter. What a relief!
I was also up and walking the halls at shift change because I could not stand to stay in bed any longer.
More about the day after later.

Day of Surgery, January 18, 2007

2008-01-26T20:53:00.000-05:00

I would like to start by saying that I am not a morning person and 4:30 is an ungodly hour to have to drag oneself out of bed. I admire those of you who do this on a regular basis. I work evenings in a restaurant so I am more of a night person.
I feel like I haven't slept all night but I drag myself out of bed and prepare to go the hospital. I planned on wearing pj's so this wasn't too difficult.
Upon arriving at the hospital, "G" and I check in for surgery. Then we go sit in the short-stay surgery waiting area until we are called back for pre-op procedures. I was called back first and the last I remember is having my IV inserted.
I would love to share memories of gong to the operating room, but I have none. The next thing I remember, after the IV, is waking up in recovery and talking to Paul (he monitored my vitals while in recovery and was very good to me). I was a little stoned from anesthesia but I remember that my pulse/ox was 100 and Paul telling me that it had remained at that level, I must not be a smoker. He left me on oxygen briefly but felt that I would be fine with it removed. Yeah, one less tube in me!
I think they explained my "pain ball" to me again while in recovery. It is exactly that, a ball filled with local anesthetic attached by small catheters to the stomach. It takes about 6 hours to kick in and lasts for 3 days. It basically releases local anasthetic to the areas that were cut inside of you. Next, they shot some morphine into my IV for the pain and explained how to use my morphine pump. I thought this would be the greatest thing ever but I was wrong, as I will explain in my next post.
For some idea of the time my half of the surgery took, here is a little time frame:
My operation started at 8:13AM, was taken to recovery at 12:27PM and woke up around 1:30Pm. I was taken to my room by 3:00PM.
Next post: My morphine scare!

January 17, 2008: The Night Before

2008-01-26T20:32:00.000-05:00

I am trying to catch this up in short segments so there isn't one huge post to read to get acquainted with my story. So moving right along, it is now the night before surgery.
I am thinking "What is wrong with me? I should be scared." Maybe I am a little bit crazy, but I still am calm.
We are spending the night at the Medical Center Inn and have some instructions for the night before surgery. No eating or drinking after midnight, wash with an antibacterial soap, and (oh boy) use an enema. I was more terrified of the enema than anything else. Not going to give you details of that but I hope I never have to do it again!
After we did all of this, we attempted to sleep. Last I remember looking at the clock it was 11:56PM. We were planning on getting up at 4:30 to get ready. We had to be at the hospital at 6AM.

Should I Be Scared Yet?

2008-01-26T20:01:00.000-05:00

This is really weird, but I never really got nervous before the surgery. I was even very calm the morning of surgery, during pre-op procedures before going to sleep. At the beginning, I just figured that I would get nervous as we got closer to transplant. For whatever reason, I never freaked out and remained calm about everything. Maybe this was from studying the transplant process for months beforehand or just part of my relatively calm nature. Who knows? But I am thankful to the powers that be that I was calm for everything.

Testing

2008-01-26T19:36:00.000-05:00

I began donor evaluation testing in September. Testing lasted all the way up to Jan. 16th (2 days before surgery) because they do a final crossmatch. I had numerous blood tests, including but not limited to, HIV, Epstein-Barr, hepatitis and herpes varietals. You are tested very thoroughly because they want the donor to be in excellent health before allowing them to donate an organ. I did several urine tests, a couple of renal CT scans, chest x ray, mammogram, complete gynecological exam, and an EKG. Tissue typing and cross matching were done twice. I also had to monitor my blood pressure. The testing felt like it took forever but we were told I was a compatible donor early in November and received a definite surgery date on December 26, 2007.
At times, I felt like I had no patience waiting for test results but in the end it was worth the wait. I found out that I am very healthy and could make a huge difference in "G's" quality of life.
But, I was wondering when I was going to start getting nervous about surgery.

From The Beginning

2008-01-25T23:05:00.000-05:00

I am one week post-op and have decided to start at the beginning of my story.
On May 23, 2007, someone very dear to me was diagnosed with end stage renal failure. He suffers from focal segmental glomerusclerosis (fsgs) and had virtually no symptoms up to that point. Since diagnosis, we have found out that it actually took about 10 years for this disease to shut down his kidneys. Options for treatment when you reach end stage renal failure are a lifetime of dialysis or transplant.
This may sound crazy, but I just felt like I was supposed to donate. I am not the most religious of people, but do believe in some kind of higher power, so this feeling really had me thinking more about my faith. I told "G" I wanted to start testing as soon as possible. I really don't know what he thought about it and didn't ask. I am the type of person that just takes control of the situation and dives right in.
Many of you are probably thinking "is this woman crazy?" Why would you do this for someone who is not your own child or close family member? I don't think I'm crazy. Believe me, I was asked a lot of questions about this decision during the testing process just to make sure that I wasn't insane. I just "knew" I was supposed to do this.

The Learning Process

2008-01-25T21:23:00.000-05:00

Although I told "G" to tell his doctors that I was ready for them to rip out my kidney at the exact moment he told me of his condition, I knew there would be lots of medical testing involved. His team of doctors wanted me to wait until he was on dialysis for 3 months and to wait for Medicare to kick in so I wouldn't be hit with outrageous medical bills. I decided that since there was nothing I could do to speed up the process, I would learn all that I could about end stage renal failure. The links I have listed on this site were a great help to me. I also spent endless hours on the internet looking for any information I could find. My local library had one book related to kidney failure. This was a bit of a surprise but I checked it out and read it a few times.
FSGS is actually pretty common although little is known about what causes it. Anyone who follows the NBA may be aware that this is the same disease Alonzo Mourning, of the Miami Heat, was diagnosed with prior to his kidney transplant.
I am not going to list every piece of info I read here, but I will answer questions.
What I am trying to stress in this post is that this is not a decision to be taken lightly and you should educate yourself about kidney failure and the options available. Not everyone should donate an organ and you can't really change your mind after having one removed, so be 100% certain of your decision.
If you have to wait for donor evaluation to begin, this is the perfect time to begin learning. Talk to doctors, transplant recipients, live donors and family. Living donors online has a great message board and you can read the experiences of many who have undergone the donation process.