Well, I am writing this for Shann tonight because she is still quite overwhelmed with all the information we received yesterday in the Transplant Clinic.

They stated that for being an End-Stage-Renal patient Type V she still looks good and functions pretty well. She still does not need to be on dialysis, but they say with her symptoms, it's pretty close, so they will be watching her very closely. She doesn't have heart disease, diabetes, high blood pressure, asthma or anything that is going to make her transplant more complicated, except her anemia. They still don't know why she is still so anemic and might do a test (GED) to find out anything more so they don't have any surprises when they open her up.

We found out that the donor testing is done one person at a time. Charron, her sister, will be first. If she doesn't match then we go on down the list. So if you want to be tested, let us know and when the next donor is to be tested we will give you the name of Shannan's Transplant Coordinator and she will organize everything for you. Won't cost you a penny :)

We found out her transplant is going to cost about $250,000.00. The part that is scaring me the most are the costs of the medications she has to take forever. It's just scary and unnerving right now. They said that the first year will be the most difficult and expensive.

Shann had some more disappointment yesterday when she found out that the line of work she wants to go into (Respiratory Therapy) is really not going to be an option for her now. The transplant doctors feel that it is just too risky a field for her. So, now she is re-thinking what she wants to do for the rest of her life, she knows it will be in medicine, but now it will probably be something in radiolog or ultrasound. She will wait until after the transplant to start school again.

Shann finally feels like she can share her illness since the transplant could happen within 3 months - WOW - 3 months! It just does not seem possible. She says that people need to know now, that she won't be able to hide it and that she could use the support.

On the GFR kidney rating scale Shannan is a #14. You have to be a #20 or below before you are eligible for dialysis or a transplant. They really look for the number to be around #15 though before they transplant. Shannan was a #14 in May and so she could have been transplanted then if we would have had a donor. We live our life in numbers now - oh and in low sodium, low phosphorous and low potassium diets. I spent 4 hours at the grocery store just walking around reading the labels, and I must say I think I am kind of an expert now, just so we could buy the kind of foods that Shannan must eat and also that taste good. It is very common for pre-kidney transplant patients to lose desire for protein and do not want the different meat textures - but she has to have some. So we trying new foods and experimenting so, if you have any really good recipies, please send them to us. She needs to eat more fish and I am really not very good at cooking or broiling fish, yikes, help me please!

Can't think of anything else right now...we will update as donor information becomes available, more testing, etc.

Love everyone,

Alana, Shannan and, of course, Charron!

Well, I received a call from the Transplant Clinic yesterday and have an all day - 9:00 am to 4:00 pm appointment on Wednesday, July 28th! Since there will be so much information to write down and remember, my Mom is coming with me (yeah, like I could have kept her away : ))

After this appointment, I will post the instructions on how to be tested as a potential donor for me.

That's all I know right now - thank you, as always!

Had another nephrology (kidney) appointment last week and I am still very anemic and so am back to getting iron infusions every other week and iron shots in-between those.

The doctor is concerned about my lab values. My potassium and calcium are too high! I didn't think you could ever have too much calcium? Anyway, I have to watch my diet and cut back on my dairy products, especially milk, which I LOVE :( I am on a new medication to help with absorption.

My doctor is also concerned that I am having a lot of night sweats. I now have to keep a log for her to review at our next appointment. I don't know if it is kidney related or not, but it doesn't sound good to me :(

I am starting to share my illness with a few more people at work, I think that is a good sign :)

I called the Transplant Clinic on Monday and I am moving forward on the "list" and she said it would probably only be 1 to 2 more weeks and I would be called to set-up an appointment. I can hardly wait to talk to those who will be so intimatey involved in my care and have them all be available in one place at the same time.

As soon as I meet with my team, I can post who should be contacted if anyone is still interested in being a possible donor.

Again, thank you for your prayer and well wishes, I believe in their power.

Update: 05/20/2010 - Dr.s Visit

I saw the Nephrologist last week and she has referred me to the Transplant Clinic at Intermountain Medical Center. I received the paperwork yesterday and after it is returned they call me for an appointment with the Transplant Clinic. I still need a kidney transplant. I also still needs some iron infusions, the shots were not as effective and I am still very anemic. The good news is that I still don't need to go on dialysis yet, which the family is thrilled about! I am in very good spirits considering and appreciate the well wishes I am starting to get from family and friends. However, it is still a bit overwhelming and I am finding it hard to talk about most of the time.

I am happy to report that my work (Intermountain Medical Center) has been awesome to me and my boss especially is very supportive as well. She has changed my work load and hours to accomodate my needs right now and I feel like I have more energy!

We(mom,Charron and I)can't wait to get into the Transplant Clinic and get all of our growing questions and concerns answered!

Thank you again for all you do in keeping me in your heart and prayers, I really do appreciate it more than you know even when at times I cannot express it. Love, Shannan

Transplant 101:
A Guide to Living Donor Transplantation What is Transplant 101?
Transplant 101 is a resource guide that has been developed by the National Kidney Foundation of Georgia's Living Donor Program to answer questions about and improve access to living donor kidney transplantation. In addition to answering commonly asked questions about living donation and kidney transplantation, Transplant 101 provides a list of community resources available to Georgia kidney patients, living donors and families. But, these are good illustrations for Utah as well until we meet with our Transplant Coordinator.
Why transplantation?
A kidney transplant is an operation in which a person whose own kidneys have failed receives a new kidney from either a cadaver donor or a living donor. While there are drawbacks to getting a transplant, such as the expensive anti-rejection medications and the side effects they cause, most patients agree that a successful kidney transplant provides them with greater freedom, increased energy and a less restricted diet.
How does a patient become a candidate for transplantation?
The patient's kidney doctor must make the referral to a transplant center. The medical team at the transplant center will then evaluate the patient to see if he or she would make a good candidate for transplantation. Some of the things the team will evaluate include the patient's past and present medical condition, his or her history of complying with past medical instructions, and the emotional support available from the patient.s family and friends. Most transplant centers will also require patients to have a financial plan to ensure that the patient has enough money to pay for his or her medications post-transplant. If the patient has trouble meeting the financial requirements, the Georgia (possibly Utah) Transplant Foundation can help with fundraising and can provide other financial assistance. If the medical team approves the patient for transplantation, the patient is then placed on the transplant waiting list that is administered by the United Network for Organ Sharing (UNOS). Once a patient is listed, the transplant can happen immediately or the wait for a compatible kidney can be indefinite. If the patient has a relative, a spouse or a friend who is willing and able to donate a kidney, the transplant can happen much more quickly.
How does UNOS match cadaver organs to patients waiting for a transplant?
When a patient is added to the transplant waiting list, his or her medical profile is entered into the UNOS computer database where it becomes part of a pool of patient names. Every time an organ becomes available, all patients in the pool are compared to the donor. The computer then generates a list of patients who match the donor organ with priority given to patients who identically match the organ. Criteria for matches include biologic compatibility between the donor and the recipient (such as blood type and genetic makeup) and time spent on the waiting list. If there is no identical match, the donated organs are distributed locally first, then are offered regionally, then nationally.
Why is the waiting list for a cadaver kidney so long?
There are a number of reasons why the wait for a cadaver kidney can last indefinitely. One reason is that the number of people in need of a kidney transplant is increasing every day. For example, in the year 2001, there were approximately 1000 people in Georgia who were waiting on the cadaver kidney list. By 2010, it is projected that approximately 3000 people in Georgia will be waiting for a cadaver kidney. While the list of patients is growing, the number of people who are willing to donate their loved one's organs is remaining constant. The myths and misconceptions that surround organ donation are difficult to dispel. Many people think donation is against their religion or that it will cost them something or that it will delay the funeral or prevent an open casket funeral, when the reality is that none of this is true.
What is living donation?
Living kidney donation is the act of a living person donating a kidney to another person for transplantation.
Are there advantages to getting a kidney transplanted from a living donor?
Yes, there are several advantages to having a living kidney donor. These advantages include better outcomes, a shorter waiting time, a shorter time spent on dialysis, and the ability to schedule the transplant for a time when the patient will be at his or her healthiest.
Who can be a living donor?
In the past, recipients could only get a living donor kidney from a blood relative. This is no longer necessary because anti-rejection medications and compatibility tests are much better than they used to be. Today most anyone who qualifies medically, is willing and has a compatible blood and tissue type with the recipient can consider being a living donor.
Can a person live with one kidney?
Yes. After donating a kidney a person can live a long, healthy life with one healthy kidney. The remaining kidney simply grows bigger so that it can take over the work for both kidneys.
How are living donors selected?
Each Transplant Center has selective criteria based on age, medical and psychological evaluations, family history of hereditary diseases and blood and tissue compatibility. Generally a donor must be at least 18 years of age; the maximum age is usually 60 but this does vary by transplant center and often depends on the particular situation. The medical evaluation will include a complete history and physical screening for kidney, heart, lung, liver, or circulatory problems that could place the donor at increased risk. Hypertension, diabetes, cancer and some infectious diseases can disqualify a potential donor. Obesity at certain centers can disqualify a potential donor due to increased risk of complications with anesthesia and post-operative healing. A weight reduction and smoking cessation program may be a prerequisite. During the psychological evaluation, the transplant center social worker or psychiatrist will determine the donor's motivation to donate, make sure the donor is aware of all potential outcomes, rule out substance abuse, emotional or competency problems and provide another opportunity for the donor to back out. Everything the donor says during this part of the evaluation is kept confidential. The selection process is so rigorous that a recipient should not just have one potential donor on hand. The more potential donors the recipient can have tested, the greater the likelihood that one of those potential donors will be able to actually donate a kidney.
Are there any risks involved with being a living donor?
A donor faces the same risks he or she would face with any other major surgery. These risks include bleeding, infection, blood clots, post anesthesia complications and in some very rare cases, death. A free medical evaluation is often considered a benefit but the risk may be the unexpected discovery of an undiagnosed medical condition such as diabetes, cancer or other chronic disease. Although some donors experience a slight increase in blood pressure, research has shown that kidney donation does not damage the donor's long-term health. Donors do not seem to be at increased risk of developing kidney disease and donors can still go on to have healthy babies.
Are donors at greater risk for developing kidney disease?
While research has shown that donors do not seem to be at greater risk than the rest of the population for developing kidney disease, there are no guarantees that a donor will not develop kidney failure due to an acquired injury or some unforeseen medical condition. Donors are encouraged to have annual physical exams so that their blood pressure and kidney function can be monitored. Each potential donor will be screened carefully for kidney disease or the pre-disposition to kidney disease. The donor's current health status, past medical history and family history are all thoroughly reviewed. The ability to predict who is at risk for developing kidney disease when there are no predisposing factors is difficult. Kidney function studies and other specific studies as listed below are a significant part of the evaluation process:
♦ 24 hour urine creatinine clearance and urinary protein,
♦ renal ultrasound,
♦ blood chemistries
Does it cost anything to be a living donor? In most cases, the recipient's insurance should cover all of the medical expenses associated with donation including the medical evaluation, hospitalization, surgery costs and post-operative care. Insurance will not cover the donor's travel and lodging expenses, child-care expenses, and lost wages for time away from work. Depending on which type of surgery the donor undergoes, recuperation time can take anywhere from 3 to 6 weeks. The Georgia Transplant Foundation offers financial assistance for living donors to help them cover some of these expenses - Maybe Utah.
Why does the donor's recuperation time range from 3 to 6 weeks?
Recuperation time is different for each patient but the reason there is such a wide range in the number of weeks is that there are two types of surgical approaches to removing the kidney from the donor. One approach is called an open nephrectomy and it involves a long incision along the donor's flank. Recuperation from this type of surgery takes 4 to 6 weeks because of the size and location of the incision. The other widely used approach is called laparoscopic surgery. This technique involves 4 much smaller incisions around the donor's abdomen. Recuperation from laparoscopic surgery generally takes 3 to 4 weeks.
What should someone do if they are interested in donating?
After a patient has been evaluated and found to be an acceptable candidate for transplantation, the potential donor should contact the patient's Transplant Coordinator. During the initial contact the coordinator does a brief medical screening to establish blood type compatibility between the recipient and the potential donor. What this means is:
If the Recipient is:
The Donor must be:
Type O Type O
Type A Type A or Type O
Type B Type B or Type O
Type AB Types AB, A, B, or O
The rH factor is not important when it comes to establishing blood type compatibility, so for example, someone who is type A- could potentially donate to someone who is type A+ and vice versa.
Are there other tests to establish compatibility?
Yes, HLA typing is done to establish antigen identification and a crossmatch is done to determine antibody compatibility.
What are antigens? Human Leukocyte Antigens (HLA) are proteins on white blood cells. A child inherits three antigens from each parent. Nearly 600 different antigen molecules have been identified. An HLA match is the number of antigens that two people have in common. An identical match means all six antigens match, a half match means three out of six antigens match and a complete mismatch. means there are no matches. The greater the number of matching antigens, the less likely the recipient.s immune system will see the donated kidney as foreign thus reducing the chance for rejection. Here is an easy way to illustrate HLA matching combinations. In the following example of family typing, each parent has two sets of antigen groups. The mother has (1,2,3) (4,5,6,) and the father has (7,8,9) (10,11,12).
Each of the four offspring has inherited his or her own combination of HLA molecules noted by the numbers under each child's name (Anne, Bob, Carol and Paul).
Anne is the potential recipient, with Carol being an identical match...Mother (1,2,3) (4,5,6) and Father (7,8,9) (10,11,12)

Ann
(1,2,3) (7,8,9)
Patient

Bob
(1,2,3) (10,11,12)
Half Match

Carol
(1,2,3) (7,8,9)
Identical Match

Paul
(4,5,6) (10,11,12)
No Match

It is important to note that any sibling has a 25% chance of being an identical match, a 50% chance of being a half match and a 25% chance of being a zero match.

Why is the crossmatch done? The crossmatch determines antibody compatibility. An antibody is a protein made by the body's immune system in response to a foreign substance. People can develop antibodies from a prior pregnancy, a blood transfusion, or a previous organ transplant. A crossmatch mixes the recipient's serum with the donor's white blood cells to determine if the recipient has antibodies to the donor's cells. Antibodies will injure and even destroy the donor's cells. A crossmatch that is not compatible means the transplant cannot be performed because the recipient's cells would destroy the transplanted kidney.
What happens after the initial contact with the Transplant Coordinator?
After the health status of the potential donor is established, the next step is to schedule the medical and psychological evaluations. Some transplant centers require an additional psychosocial evaluation. These evaluations usually require a hospital stay of two to three days. After the evaluations are complete, if the potential donor is approved as a compatible donor, the transplant coordinator will schedule the surgeries.

Transplant Stats

My family has opened a "Shannan Sweat Donation" account at Zion's bank. Their toll-free number is: 1-800- 789-BANK (2265). Those in Utah may call this number or stop by any Zion's Bank Branch.

This account will help pay for any transplant cost for myself, the donor's transplant costs that exceed our insurance limits, tests or any medications not covered by my insurance.

Any amount would be appreciated and all you have to do is call the toll-free number and say you want to donate to the "Shannan Sweat Donation" account. It is completely anonymous, we will never know names or amounts unless you tell us, we just get monthly updates on the donation amount. Be assured that your donation will be managed judiciously and is appreciated more than you will ever know!

Thank you to Lisa Meline for this most helpful suggestion, as we had not even thought of creating a Blog. Getting my information out to our family via the newsletter was the best suggestion ever!!

Answering Your Questions About Living Donation
The following provides general information about living donation. For additional information about the evaluation process, the surgery, risks and making the decision, please visit www.livingdonors.org, NKF’s Living Donors Web site. The Web site also includes ways to connect with other living donors and potential donors (through the Message Board, E-mail Discussion Group, and Pen Pals), stories about living donation, tributes to donors, and information about news and events.
What is living donation?
Living donation takes place when a living person donates an organ (or part of an organ) for transplantation to another person. The living donor can be a family member, such as a parent, child, brother or sister (living related donation).
Living donation can also come from someone who is emotionally related to the recipient, such as a good friend, spouse or an in-law (living unrelated donation).
In some cases, living donation may even be from a stranger, which is called nondirected donation.
What organs can come from living donors?
The organ most commonly given by a living donor is the kidney. People usually have two kidneys, and one is all that is needed to live a normal life. Parts of other organs including the lung, liver and pancreas are now being transplanted from living donors.
What are the advantages of living donation over nonliving donation?
Transplants performed from living donors have several advantages compared to transplants performed from nonliving donors (individuals who have been declared brain dead and their families have made the decision to donate their organs):
Some living donor transplants are done between family members who are genetically similar. A better genetic match lessens the risk of rejection.
A kidney from a living donor usually functions immediately, making it easier to monitor. Some nonliving donor kidneys do not function immediately and as a result, the patient may require dialysis until the kidney starts to function.
Potential donors can be tested ahead of time to find the donor who is most compatible with the recipient. The transplant can take place at a time convenient for both donor and recipient.
Are transplants from living donors always successful?
Although transplantation is highly successful, and success rates continue to improve, problems may occur. Sometimes, the kidney is lost to rejection, surgical complications or the original disease that caused the recipient’s kidneys to fail. Talk to the transplant center staff about their success rates and the national success rates.
Where can I find statistics related to living donation?
You can find some statistics on the United Network for Organ Sharing (UNOS) Web site. UNOS compiles statistics on every transplant center in the U.S. Go to http://www.unos.org/data/about/viewDataReports.asp to view all UNOS data. You can find statistics on the number of nonliving and living donor transplants performed at that particular center as well as the graft survival rates for the transplant recipient, the center and additional information about donation and transplantation.
The best source of information on expected donor outcomes is from your transplant team. See the list of “Elements of Disclosure” at http://www.kidney.org/transplantation/livingdonors/pdf/jama_article.pdf (page 3) for a list of issues to discuss with our transplant team. You can also check http://www.transplantliving.org/livingdonation for additional information about donation and transplantation.
Click here to read the full Q & A on Living Donation
Please visit NKF’s website on living donation at www.livingdonors.org for detailed information.
If you would like to become a volunteer and find out more about what's happening where you live, contact your local NKF Affiliate.
If you would like more information, please contact us.
©2010 National Kidney Foundation. All rights reserved. This material does not constitute medical advice. It is intended for informational purposes only. No one associated with the National Kidney Foundation will answer medical questions via e-mail. Please consult a physician for specific treatment recommendations.

Transplant conference celebrates life — and miracles like a neighbor who stepped up when a woman down the street needed a kidney.

One of the people who spoke at an annual transplant patient conference held at Intermountain Medical Center last week was Julie Reeve, a transplant recipient who ended up with hardly any kidney function after years of diabetes, cancer, and chemotherapy.

When numerous friends and family members were disqualified from giving her a kidney, she thought about going door-to-door for help. ““I thought there was no way I would get a transplant,” she said at last week’s conference. Th e door-to-door idea wasn’t half bad. Julie ended up receiving a kidney donated by her neighbor, Shelly Rose. “I just knew I wanted to do it,” Shelly said. “I watched Julie and knew her family loved her and she needed it. I was healthy and could do it, so why not?”

The transplant surgery took place in January — but there were complications. Shelly found that one of her kidneys was twice the size of a normal kidney, which caused some concern — but not enough to stop the surgery. “As long as it was all right in the end, bring it on,” she said. Today, her large remaining kidney gives her better kidney function than average donors — and a couple of doors down the street, a friend who’s thriving. “I think we had a greater recovery because of our attitude,” she said. “Anything can be accomplished with a positive attitude.” Julie reflects that attitude: “Shelly is a personal miracle from God who came into my life and saved my life,” she says.

A number of the people who support miracles like that took part in Intermountain Medical Center’s second annual transplant conference last week, which was funded by the National Kidney Foundation and Astellas. Its purpose: Help transplant patients stay informed about the latest transplant trends, connect with members of the transplant community, celebrate National Donor Awareness Month, and encourage organ donation.

To sign up to be an organ donor — or get more information about organ donation
in Utah — click on www.yesutah.org or call Intermountain Donor Services at
1-866-YES-UTAH.

National Kidney Foundation

http://www.kidney.org