Waiting for Test Results

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.orghttp://www.livingdonors.org/

National Donate Life Month

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

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!