Living Donor Paired Exchange Registry

I signed consent to participate in the Living Donor Paired Exchange (LDPE) Registry today!

My husband accompanied me to see Dr. Richardson. He says he is not a surgeon but rather a medical doctor (aka academic expert on kidneys) who analyzes results, makes recommendations and provides information about being a kidney donor and recipient.

To start things off, I'm in EXCELLENT health! Dr. Richardson said my cholesterol is perfect, my blood pressure is excellent, my filtration system (how my kidneys deal with water and waste) is excellent - numbers are far above "normal" and that my kidneys work equally 50/50. My heart is in good working order and since my blood type is O, I am able to give to anybody. After reviewing pages and pages of my 'donor file', explaining various things to us then examining a fresh urine sample, checking my pulse, blood pressure (120 over 70), taking deep breaths as he listened inside my chest, he says "You're Accepted". YAY!!!!

I am so happy! :)

Dr. Richardson explained the 2 surgery options and highly recommends, if possible, I go for the Laparoscopic Surgery since although it is 3-4 hours instead of 2 hours for the traditional surgery, it is far less invasive so recovery time is quicker and I'll experience less pain and scarring. After his explanation that there are 3 small incisions in front near my belly button (1 for a camera, 2 for instruments) then 1 further below the lower abs for extraction (where they only split the muscle rather than cut all the way through), it certainly sounds like Laparoscopic Donor Nephrectomy is the best surgery for me. It also means I will definitely be donating my left kidney. (Whenever I thought about the surgery, my senses always veered to the left; I had a feeling it'd be the left kidney for some reason or other.)

I met with Michael the Transplant Coordinator afterward who was told by Dr. Richardson that I should only get the laparoscopic surgery however Michael couldn't make any guarantees. The doctor felt I should be considered with the highest priority and honour my wishes as best they can. There are 2 hospitals that do not offer this particular surgery so I guess it will depend on where the recipient is.

After some information exchange with the coordinator and reading the forms, I signed my consent then went to the Diagnostic Test Centre to give a blood sample to be officially entered into the LDPE registry.

I was told that possibly end of September I will need to have more blood work to ensure a tissue match with the potential recipient but then it'll be another 2 or 2½ months before the actual surgery.

Live Donor Laparoscopic Transplant

Nephrologist

I just received a phone call from Sherry at Toronto General. There was a cancellation so she grabbed the opening with Dr. Richardson to meet with me. I meet with him on Thursday, August 27th at 11 a.m. The appointment will only be half an hour to an hour long and he will tell me then and there whether or not it's a "go".

The nephrologist may or may not request additional tests or re-testing but in any case afterward I have to visit the Transplant Coordinator's office to let them know the results of the meeting. I asked whether there were donor/recipient pairs lined up for me to be slotted in with. Sherry told me that there are people listed, people who have been through their assessments and are ready to go, and apparently I get to choose the program I want to participate in but not the recipient. I asked if my husband could attend the meeting too and since he is not the recipient he is permitted.

Dr. Richardson has been reviewing my results all along and I cannot wait to hear the final word on this process!

Robert MA Richardson MD, FRCPC is a Professor in the Department of Medicine at the University of Toronto. He is a staff Nephrologist and Director of the Hemodialysis Program at the Toronto General Hospital.

Division: Nephrology
Hospital Affiliation: University Health Network - TGH
Academic Rank: Professor
Job Description: Clinician Teacher

What Is a Nephrologist?

A nephrologist is a physician who has been educated and trained in kidney diseases, kidney transplantation, and dialysis therapy. Nephrology is classified as an internal medicine subspecialty. Knowledge of internal medicine is required to obtain certification.

I just did a Google search on "nephrologist Toronto General" and got the Toronto General Hospital University Health Network Multi Organ Transplant Program website:
Toronto General Hospital Kidney Transplants

Where Are the Kidneys and How Do They Function?

There are two kidneys, each about the size of a fist, located on either side of the spine at the lowest level of the rib cage. Each kidney contains up to a million functioning units called nephrons. A nephron consists of a filtering unit of tiny blood vessels called a glomerulus attached to a tubule. When blood enters the glomerulus, it is filtered and the remaining fluid then passes along the tubule. In the tubule, chemicals and water are either added to or removed from this filtered fluid according to the body's needs, the final product being the urine we excrete.

The kidneys perform their life-sustaining job of filtering and returning to the bloodstream about 200 quarts of fluid every 24 hours. About two quarts are removed from the body in the form of urine, and about 198 quarts are recovered. The urine we excrete has been stored in the bladder for anywhere from 1 to 8 hours.

How Well Do Your Kidneys Work?

The kidneys perform several important jobs including the removal of chemical and mineral impurities from the blood, balancing acid in the blood, and controlling body fluids. These delicate processes take place when blood flows through the kidneys. The kidneys also help to control your body’s production of red blood cells, regulate blood pressure, and help keep bones strong and healthy. Each kidney has about a million tiny nephrons. Each nephron has a group of tiny blood vessels called a glomerulus. The glomerulus is the small structure in charge of filtering and cleaning the blood as it flows through the kidney. The rate at which the glomerulus filters the blood is called the glomerular filtration rate or “GFR”.

The kidneys filter almost 200 quarts of blood every day and make approximately two quarts of urine as the waste product. When the kidneys don't work like they should, products in the blood which are supposed to be removed, like the blood urea nitrogen (BUN), and creatinine (Cr) stay in the blood and can be easily measured with a blood test. Other products that are supposed to stay in the blood, like proteins, end up in the urine and can be measured with a urine test.

How is a single kidney different?

The single normal kidney will grow faster and get larger than a normally paired kidney. For this reason, the single kidney is larger and heavier than normal, and it is, therefore, more vulnerable to injury. It is important to be aware of the increased risk for injury with certain heavy contact sports, so that careful decisions may be made regarding participation in various physical activities. The American Academy of Pediatrics, American Academy of Family Physicians and the Medical Society of Sports Medicine have suggested that people with one kidney avoid sports that involve higher risks of heavy contact or collision. This includes boxing, field hockey, football, ice hockey, Lacrosse, martial arts, rodeo, soccer and wrestling. Anyone with a single kidney who decides to participate in these sports should be extra careful and wear protective padding. He or she should understand that the consequences of losing a single kidney are very serious.

Excerpts taken from: http://www.kidney.org/

Kara and Joe

Kara and I used to be pretty good friends. We met online February 1999 and in person July 2000 when I vacationed with her and her family and friends (LP2K!). Today Kara is 35! She lives in Martinez, California. The last we were in touch, I knew her husband Joe had kidney problems but I didn't know recent details until today when Kara's brother Jeff posted a picture of Joe on Facebook with a caption that said:

"Btw, he needs a kidney, is on dialysis every night. So if you know of a spare kidney let me know. Actually, things look good. Kara has been approved to donate hers, so we are hoping for a swap later this year...."

That is a really bizarre coincidence. We haven't been in touch in years. I remember saying at the time that I would be willing to be tested as a donor if the time came Joe needed a transplant but I never actually knew anything about it at the time or thought I might actually be one, then we lost touch.

Photo by Jeff Birkenstein

Social Worker

The social worker met with Lorne and I for over an hour this morning and she spoke practically non-stop for 50 minutes providing Lorne with background and lots of information before he had a chance to really ask anything in detail. She had answered most of his questions already and together they agreed that being a Living Kidney Donor is almost something I was meant to do.

We discussed how this program of living kidney donors gives research and technology time to figure out how to grow kidneys for transplant recipients or any other advances in medicine there could be out there. It's exciting times.

Brigitte said she would file her report by the end of the week. The next thing would be for me to meet with the nephrologist who ultimately determines my suitability. She reminded me to speak to my parents and Lorne assured her I would. Now I have write a letter to my family and await the phone call telling me the date of my next appointment.

After 2 days of tests...

The Toronto General Hospital is extremely efficient. All my appointments went very well, everything was easy to find and people were very helpful. There is even a great selection of healthy choices in the food court not to mention both Starbucks and Tim Horton's on the main floor when you first enter the main doors.

I found it most interesting to meet with Dr. Esther (the first psychiatrist I've ever known/met). She is a very nice lady. She determined that I am not depressed or suicidal and that my intentions are genuine. I became emotional speaking to her at one point. It came on quite suddenly. Something she asked prodded at me.

Brigitte, the Social Worker is also a very nice lady. I had never spoken with a social worker before either and didn't really understand her role in this. She spoke to me even longer than the psychiatrist had and explained a few things that I needed to do that I hadn't even contemplated deeply. Namely, she wanted me to discuss my plans to donate my kidney with my husband in more detail as well as with my family. As well, she made me aware that all aspects of this donation could not affect me negatively whatsoever so she had to ensure that I would not be physically, emotionally nor financially hindered by doing this.

Physically, all the tests I had done previously will determine whether I am physically able to donate a kidney. Emotionally, she needs to know I have support from my husband and family members. For instance, I will literally need some help around the house as I will not be able to lift anything heavier than 10 pounds (no laundry for a month!). And financially, since I will be out of work for a few weeks (a few days in the hospital, up to 6 weeks for recovery), I had to be able to survive, not go into debt, etc.

So... I went home and talked to Lorne more. The whole thing seemed more imminent doing that. He was concerned but I mentioned that he will be put more at ease when he meets with the social worker. I had already booked the appointment for him and I to go back the following week, Thursday, July 16, and speak with Brigitte. In the end, he ultimately said that he loves me and will always support me in my decisions so at that moment I felt extremely relieved and happy. It just made this whole thing a lot easier. I couldn't have married a better man.

Then I spoke with Erika in HR and my managers the next day, Wednesday, July 8th. I had already mentioned it to May briefly before since I had to take a couple of personal days off for literally 2 day-long series of appointments (I have never spent so much time in a hospital). Erika was helpful and encouraging and Geoff was very supportive saying that a few weeks over the course of my career is insignificant. That just topped it off. I am feeling really good about this decision - it seems all sides are a "go" now. Having people on board with me makes all the difference in the world! I have my husband and my employer telling me this is a good thing for me to do.

Paul's Dad

I didn't know until the karate meeting tonight. I had heard Paul needed to take some time off from karate because his father was "sick" but didn't realize what it was. His father had experienced kidney failure, was ill for some time and is now doing better but needs to go to the hospital 2-3 times per week for dialysis. Paul takes him there some mornings. I couldn't believe this odd coincidence of somebody so close.

I asked Paul if he was on a donor waiting list for a kidney but he just said that it wasn't that serious.

I don't think there is a "cure" or that it will get better. I think it is just a matter of time...