Good New and Bad News

I just spoke with the transplant coordinator Michael Garrels (x 5889).

He said the good news is that the cross match test I did last week came back negative. There were no reactions from the recipient and this is the most sensitive test they can do for compatibility.

The bad news is that there have been further delays in performing the transplant surgeries. The new date will now be sometime at the end of March 2010.

I asked a few more questions even though I've heard all this before... but basically there are 3 pairs in my match group. I am the one responsible for starting the domino effect effectively giving 3 recipients a kidney. The respective loved ones of 2 recipients are also donors then the remaining recipient comes from the deceased donor list to close off the chain reaction.

It all sounds great although now I have to wait 3 more months...

In the meantime, I've connected with a fantastic role model, Macey Leigh! (I am biased, we share the name "Leigh"). She's in fantastic shape as she competes in fitness competitions and is big on health but more interestingly and importantly she's an advocate for organ donation and particularly living kidney donors - she is a living kidney donor!

Here is her main website: Macey Leigh

Waiting on information from another province

I spoke with Sherry this morning and there is no news yet. Toronto General is ready to go but with my group of donors/recipients apparently they're still waiting on information before any coordinator can be done on this end.

There were 2 match runs done and mine involves 1 or 2 other provinces. I left a voice mail for Michael with all my contact numbers. I would really, really love to get a surgery date before the holidays!

40th Birthday Photo!

Largest-ever kidney swap donors, patients meet - Health care- msnbc.com

Largest-ever kidney swap donors, patients meet - Health care- msnbc.com

First cross match test

I worked from home yesterday so I had messages at work today. Both Michael and Sherry had called me from Toronto General. They need my blood. The HLA lab is creating a spot for a cross match test for me. I need to go to the Diagnostic Test Centre on the ground floor between 3 and 4:30 p.m. Monday, December 14, 2009.

The lab will be able to process and have the results by the New Year. There is already a first draft for the surgeries however Sherry indicated they want to have everything nailed down the week of the 21st. I hope to hear my new surgery date before we head to New Brunswick for Christmas holidays!

There will be a 2nd cross match test 1 week before the surgery to double-check compatibility.

Sherry mentioned she noticed my 40th birthday is next week; hers is 2 days later on December 20 and she'll be 50. :)

What is cross matching? from www.giftoflife.on.ca
This important blood test is performed to further determine compatibility between donor and recipient. White blood cells from the donor are mixed with blood from the recipient. If the donor's white blood cells are attacked and killed, this is known as a "positive" cross match and indicates that the donor and recipient are not compatible. A "negative" cross match, on the other hand, indicates that surgery can proceed.

Living Donors Online Forum

An online community for living donors, potential donors, their families, and medical professionals, Living Donors Online: LDO

Living Donation Forum: Living Kidney Donor Message Board

Video - Laparoscopic Donor Nephrectomy

Below is a video of a living donor kidney transplant video on OR Live.

VIDEO of a Living Donor Kidney Transplant Surgery
Length: 1h 4m 38s
Originally Aired: March 25, 2009
Webcast Event from Sentara Norfolk General Hospital, Norfolk, Virginia

Experienced surgeons show the laparoscopic procedure for removing a kidney from a healthy donor to transplant into a person suffering from kidney disease.

Over 1,700 kidney transplants have been performed at Sentara Norfolk General Hospital where the kidney program is ranked among the top 50 hospitals in the nation by the US News & World Report for it's Renal Transplant Program.

Surgery is Delayed :(

Michael Garrels, the transplant coordinator, just called me to say that there has been a delay due to an issue with one of the recipients. :(

The cross-matching tests won't take place until December or January and the transplants not until February 2010.

Like I was told everything in life happens at a certain time for a reason.

Surgery is Scheduled!!

At least tentatively... A match run was done and, as expected, I was linked with a potential kidney recipient!

A virtual cross match was done where the antibodies of the recipient and my tissue typing are entered into a computer system that determined, at first glance, we're a match but a couple more tests still need to be done: An actual cross-match test and a blood test. And because a recipient's antibody levels go up and down there is a second cross-match test done closer to the surgery.

And if all goes well, my surgery is scheduled for December 9, 2009! I can barely believe it! That is exactly 1 month from today, 4 weeks from Wednesday!! I'm excited!

There will be a total of 12 transplants performed and in my group there are 3 pairs.

This is a new link posted on @organdonations on Twitter that is a similar set up to mine (3 donors, 3 recipients):
http://www.telegraph.co.uk/health/healthnews/6524508/Doctors-to-perform-Britains-first-three-way-kidney-transplant.html

From the Canadian Society of Transplantation:
A living donor paired exchange registry is a database of medical information on incompatible donor-recipient pairs. Each pair consists of a patient with chronic kidney disease and someone who would like to donate a kidney to them, but cannot do so because they are ABO or HLA incompatible. At regular intervals, a mathematical algorithm is applied to the database to identify and optimize the number of compatible pairs that might be able to exchange donors so that both patients can receive a living donor kidney transplant.

From the Transplant Week website
Medical Views: Living Donation -- Is It For You?

News

I find out Monday! I didn't provide my new address and phone number to Michael Garrels so he couldn't reach me yesterday. Sherry left me a voicemail at work this morning so I was very excited to call her back. Unfortunately, Michael isn't in the office today. Argh! I want to know!! All Sherry could tell me is that Michael has news for me. I guess that is good but it doesn't do me any good. I want to know! At least I have something specific to look forward to. I hope I have a recipient. I wonder if my recipient knows yet.... :)

Anxious!

I called Sherry at 3:10 p.m. Today is the day they see what matches come out of the registry. She said it hasn't happened yet. Donors and recipients can still be entered into the database up to midnight tonight. At that time the computer system does the scan for donor/recipient pairs. She said Michael will let me know as soon as he knows something.

National LDPE update

I called Sherry Young because I was curious where everything stands. Every few months, a few transplant hospitals across Canada aim to clear as many donors and recipients and enter them into the Living Donor Paired Exchange Registry. The HLA lab enters the tissue typing for everybody then a date is selected when a check is run on the national database for matches.

I'm already on the list! Sherry tells me Dr. Richardson cleared me as Category "A" - whatever that means but she said it was "good". :)

When I was cleared in August, the next run was supposed to be September 28th but it has been pushed out till October 28th. Michael Garrels is back from vacation next week too so I will hear more then.


More Info: HLA stands for human leukocyte antigen, a group of proteins present on the surface of all cells on the human body.

HLA matching is an essential step before an allogeneic transplant.

Click here for more info on HLA in transplants

Sherry Young

416-340-4800 x 6775
Assistant to Michael Garrels
Transplant Assessment Office
M-F 8-3:30 p.m.

First cross-province domino kidney transplant surgery successfully completed

The first cross-province domino kidney transplant surgeries involving Canadian Blood Services' Living Donor Paired Exchange (LDPE) registry were successfully completed on Wednesday, June 24, 2009 and were carried out by more than two dozen medical professionals at St. Paul's Hospital in Vancouver, the University of Alberta Hospital in Edmonton, and Toronto General Hospital.

"The success of this domino procedure proves the effectiveness of the LDPE registry and highlights the benefits of operating a national system for organ and tissue donation and transplantation in Canada" says Chief Executive Officer, Dr. Graham Sher.

In all, eight Canadian patients took part in the domino surgery - four kidney donors and four kidney transplant recipients.

"This milestone not only means that four recipients received a transplant," says Dr. Sher. "It also means that four people have been removed from their local deceased donor kidney wait lists, and others who continue to wait on the list are one step closer to their own transplant".

The organ and tissue group at Canadian Blood Services will continue to develop the LDPE registry and are already working on new proposals for future transplants.

http://www.ccdt.ca/english/home.html


Kidney: Living Donor Paired Exchange Registry (LDPE)

There are two types of kidney donation; deceased and living. Although deceased donation is the type most people are familiar with, it is also possible for a healthy living person to donate a kidney- living kidney donation. This involves a surgery to remove a kidney from the living donor and then to transplant it into a patient who needs a kidney - the recipient.

Kidney failure is also known as Chronic Kidney Disease (CKD). An individual with CKD has three treatment possibilities: dialysis, a transplant from a deceased donor, or a transplant from a living donor. Transplantation is a preferred alternative to dialysis. Unfortunately, there are not enough deceased kidney donations to help everyone who needs a kidney transplant; many patients on the wait list will never receive one.

There are many advantages to live kidney donation. For example, a kidney from a living donor is usually healthier, may function better, and may last longer than a kidney from a deceased donor. It also helps to shorten the wait times for other CKD patients because the person receiving a living donor kidney is no longer on the waiting list.

Any adult who is in general good health can be assessed for living kidney donation. Blood tests will first determine whether the donor is a potential match for the recipient. If so, the donor and recipient are called a compatible pair. Additional tests will then make sure that both are medically able to undergo the surgeries. Only then can a transplant be approved. The donation and transplant surgeries are scheduled when both the donor and the recipient are in the best possible health.

If the blood tests indicate that the recipient and donor do not match, they are called an incompatible pair. This means that the donor's blood type is not compatible with the recipient's blood type or the recipient has proteins in his/her blood (known as antibodies) that will reject that donor's kidney. When this happens, if the pair is interested, additional medical tests can be done to see if they are healthy enough to participate in the Living Donor Paired Exchange (LDPE) Registry.

The LDPE Registry is a secure computer database. It contains medical information about incompatible donor-recipient pairs from across Canada. The Registry compares the medical information on all the pairs in the database and identifies pairs that might be able to exchange donors.

On February 12, 2009, Canadian Blood Services held a press conference to publicly launch the LDPE Registry.
Click here to read the News Release.

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...

Letter from UHN confirming next appointments

Michael Garrels RN BScN(c), Transplant Coordinator, Living Donor Kidney Program from the University Health Network sent me a letter. Actually, it was his Administrative Assistant Sherry Young that organized all the appointments over a 2-day period and sent me official notification of them. I called to confirm I'd be there.

Since this is my first visit to Toronto General Hospital, I will need a Blue Patient Card. It is also suggested that I do not wear fragrance when going to the hospital for appointments. After have been in the hospital for a short time, I discovered there are numerous "hand sanitizing" stations throughout the hospital, at every door, at every corner. And each office, reception would ask if you had sanitized your hands before approaching the desk. If not, there was sanitizer there for you. There's no reason to think of a hospital as "germ-y" after seeing all that!

The following appointments have been arranged exclusively for me as part of my kidney donor assessment:

Monday, July 6, 2009

Chest X-ray
9:00 a.m.
Preparation: None
Duration: 0.5 Hour
Location: Toronto General Hospital - 1st floor North Bldg - Medical Imaging

GFR (Renal Scan) ***This test is a two part test***
9:45 a.m. AND 12:45 p.m.
Preparation:
Duration: 1.5 Hours part 1, 1.5 Hours break, 0.75 Hours part 2
Location: Toronto General Hospital - 1st floor North Building - Medical Imaging

If you have any questions or concerns about the test, or if you need to reschedule your appointment, please contact the Ultrasound Department at 416-340-4800 ext 3311.

CT Scan
11:30 a.m.
Preparation:
Duration: 1.0 to 1.5 Hours
Location: Toronto General Hospital - 1st floor North Building - Medical Imaging

If you have any questions or concerns about the test, or if you need to reschedule your appointment, please contact the CT Department at 416-340-4800 ext 3384.

Dr. Esther Elliott, Psychiatry (All anonymous donors)
2:00 p.m.
Preparation: None
Duration: 1.0 to 1.5 Hours
Location: Toronto General Hospital - 8th Floor North, Out-Patient Psychiatry (Beside the East Elevators)

If you have any questions or concerns about the test, or if you need to reschedule your appointment, please contact Deanna at 416-340-4800 ext 3043.

Michael Garrels RN BScNc (Transplant Coordinator) Donor Education
3:30 p.m.
Preparation: Please read "Donor Package"
Duration: 1.0 Hours
Location: Toronto General Hospital - 12th floor Clinical Services Building, Room 1217

Tuesday, July 7, 2009

Abdominal Ultrasound
9:00 a.m.
Preparation:
Duration: 1.0 to 1.5 Hours
Location: Toronto General Hospital - 1st floor North Building - Medical Imaging

If you have any questions or concerns about the test, or if you need to reschedule your appointment, please contact the Ultrasound Department at 416-340-4800 ext 4518.

Brigitte Talevski MSW RSW (Social Worker)
10:00 a.m.
Preparation: None
Duration: 1.5 Hours
Location: Toronto General Hospital - 11th floor Clinical Services Building - Room 1105

If you have any questions or concerns about the test, or if you need to reschedule your appointment, please contact the Social Work Department at 416-340-4800 ext 5655.


Next Steps, Not Yet Scheduled:

Transplant Nephrologist

But let's see first how well I get through 2 days of poking and prodding (physically as well as mentally!). Below are some of the test details.

Renal and CT scans - Instructions

Renal Scan/GFR Instructions to Patients

There is no preparation for this test but this is what the 3.5 hour procedure entails (I begin this process at 9:30 a.m. immediately following the chest X-ray):

1. First they measure my height and weight.
2. Then I drink 2 to 3 glasses of water over 15 minutes.
3. I will be asked to use the washroom before the test begins.
4. I lie on a special bed and they inject me with a small amount of the radioactive tracer.
5. They take pictures as I lie there for 20 minutes.
6. I use the washroom again.
7. They take 2 more quick pictures. These only last 1 minute each.
8. I come back for the first blood sample 1 hour after my injection.
9. I come back for the second blood sample 3 hours after the injection.

GFR stands for Glomerular Filtration Rate - how the blood vessels in my kidneys are filtering.

What happens after the test?
There are no known side effects from this test so I can go back to my normal activities.

CT Abdomen/Pelvis Instructions to Patients

What a CT scan is for:
A CT scan is an x-ray that we do using a computer. We take a series of pictures that show more detail than regular x-rays. Sometimes doctors use CT scans as guides when they are doing biopsies.

Before Your CT Scan:
If you are having a CT scan of the stomach (abdominal CT scan) do not eat or drink four (4) hours before your appointment. We might ask you to drink barium or water one hour before the scan. Barium is a liquid that makes your stomach and intestines show up in the scan. For abdominal and some other CT scans we might inject you with a dye. We give you a needle in your arm and inject the dye right before the scan. The dye makes your blood vessels show up in the scan.

How long with the scan take?
The scan takes from 10 to 20 minutes. You may be at the hospital anywhere from 30 minutes to 2 hours depending on the type of CT scan you are having done.

What happens during the scan?
1. You lie down on a table.
2. We put the part of your body that we need to scan into position. It needs to be in the middle of the scanner.
3. The table that you are lying on moves you in and out of the scanner. The scanner is a large machine that takes up most of the room.
4. When the scan is actually happening, the technologist leaves the room.
5. We can still hear you and see you through a window.
6. We give you instructions through the intercom.
7. You have to lie still while the scan is happening.
8. You might hear buzzing or clicking noises from the scanner. These are normal and you don't need to worry.

After Your Scan:
You can eat as you normally would after the scan as long as you don't have another test to do. If you had to drink barium or if you were injected with dye, drink lots of fluid over the next 24 hours to help flush them out of your body. After the scan, we study the results and send a report to your doctor in about a week. Your doctor will answer any questions you have about your diagnosis.

When You Come In For Your CT Scan:
1. Don't wear jewelry (or be prepared to take it off for the scan). If we are scanning you above the neck, you may also have to take off your dentures, hearing aids, or hairpins.

I didn't wear jewelry to the hospital at all but I completely forgot to remove my belly button ring. I removed it mid-test and it was returned to me in a paper cup used for holding people's dentures. :)

2. Try to bring someone with you. If you're having a CT-guided biopsy, you'll want someone to help you get home afterward. N/A

3. If you require a translator you must notify the hospital before your appointment so that we can make arrangements for a translator to be available for your appointment. N/A

4. Bring your health card. (I couldn't believe somebody that stood in line ahead of me to see the social worker complained over and over to the receptionist that he had to show not just his health card but the blue hospital card too. I wish I had thought at the time, as I did later, to mention to him that it is a lot better to do that for free health care than to dish over your credit card.)

5. It's important to arrive on time. If you are more than 15 minutes late, we may need to reschedule your appointment.

Abdominal Ultrasound with Doppler

Where do I go for the test?
1st floor Clinical Services Building, near the West elevators, check in at Reception please.

Why do I need this test?
The ultrasound "looks" at the organs inside the abdomen, especially the liver, spleen and kidneys and their blood vessels.

How is the test done?
A jelly is put on the abdomen and a wand is placed on the abdomen to "see" the organs and the blood vessels inside.

How long will the test take?
The test will take about 60 MINUTES.

What do I need to get ready for the test?
1. If your appointment is in the morning (before 12:00 noon), please come fasting (nothing to eat or drink) for 12 hours before the test.
2. If your appointment is in the afternoon (after 12:00 noon), you can have a light breakfast (toast and juice) before 8:00 a.m.

Just getting an opinion

I had the opportunity to talk privately with a good friend Keren today so I thought I'd ask her what she thinks of this. She first asked me my reasons for doing it. I explained about Rollie. I don't know if that's the entire reason but it's where I begin.

She told me that it seems to be in my heart to give, perhaps to even be a calling, so if I'm absolutely certain, then go for it. She told me the recovery won't be easy and that I'd "feel" it. But there are always the obvious questions... and contemplating the answers to those questions why people opt against this. I was happy with her response though.

I'm think I'm going to Google "live kidney donor forums" or something and see what I come up with. I think after talking with the specialists in July, too, I'll have a much better idea what I'm getting myself into. They may also give me some direction as to where to find the support I seek.

The phone call from TGH

What do they say about whispering to the universe? Say something, write something even, and it will boomerang back to you with some kind of answer. Well, I got a phone call from Sherry today from the Toronto General Hospital around 4 p.m. in regards to the next steps after just thinking today I should call but not having the number with me.

Sherry had called my house initially but reached me at work. She told me that Michael wanted her to expedite the process which prompted her to call me and set up the next appointments.

Realizing who was on the other end of the phone made me really anxious. I knew in the back of my head that I wasn't scheduling surgery but I felt panicked about that notion just the same. It felt a little more "real". Anyway, before I got an answer I asked twice, "What do the next appointments entail?" Well, it requires the better part of 2 days so I have to take time off work. Sheesh, this is just for the testing aspect of it. Ok, when is the next available time slots? Monday, July 6 and Tuesday, July 7 I'm scheduled to arrive at Toronto General at 9 a.m.

What are these next tests, I ask? Here goes (in part):

* abdominal ultra sound
* CT
* chest x-ray
* renal scan
* meet with a social worker
* meet with the transplant coordinator
* meet with a psychiatrist (to see if I'm simply not crazy for giving away a perfectly good kidney to a complete stranger for no apparent reason)

The lady ends the conversation telling me she'll send a letter with instructions.

So. Do I take 2 vacation days? Do I call in sick? I ping May to chat with her before she leaves for the day. We meet briefly and I have to explain the circumstances. Her eyes kinda bug out of her head and after she suggests I take some personal days (reminding me I have 3 each year) she tells me that although it's a good thing for me to do I should seriously reconsider going through with this. She also wondered if this was to be made public and I told her I was just going through the tests now and that I could back out at any time so I didn't really care to share the story so soon. I think some people won't understand and I think I'd feel a bit awkward talking about it prematurely.

This particular surgery has been performed for 50 years so there's got to be plenty willing to share their stories.

I feel undecided about my emotions and leave work feeling somber. After arriving home and watching a little TV with Ben and Brittany, Brittany asks if I'm OK, that I seem a little mellow. Besides telling her some strange family issues going on (I'm linking my Care Page but I haven't added any info yet... http://www.carepages.com/carepages/WalterCorey) I explain about the kidney call. After mentioning the psychiatrist Ben hadn't realized why I was doing a 24-hour urine test and said, "You're donating a kidney?" Well so far that is the plan but we'll see.

I have to research more so I look at my Delicious pages and browse through these sites - full of information. Wow, I read about the surgeries but the recovery time I wasn't thinking about much. It seems like I'm going to have to make arrangements with work - to work from home - because recovery is several weeks! Gulp. I've only had gum and laser eye surgery and have never been "put under" so that part also makes me nervous. But I do still feel those things are rudimentary in comparison to multiple sessions of dialysis every week.

Here are the sites I browsed:

http://www.giftoflife.on.ca

http://www.kidney.ca

I want to go as far as I can until they say, OK well the next thing is to actually schedule the surgery. We have a healthy candidate lined up needing your kidney. At that point, I can say "yes" or "no"....

The Canadian Blood Services newsletter

It started with a newsletter emailed to me this spring. I give blood regularly... I just made my 69th donation. http://www.blood.ca/

I was reading about OneMatch formerly the Unrelated Bone Marrow Donor Registry (UBMDR). I've been registered but then I noticed something about organ donation. Of course this peaks my interest. My brother Rollie donated his organs when he died. I'd like to be able to do the same. But I'm not guaranteed to be able to donate my organs. What if I'm not healthy, or what if I die in such a way that my organs cannot be used? Live Kidney Donation seems to be a viable alternative... and an assurance that I can give somebody an organ, even if it is before I die.

On Friday, April 3, 2009 I called the University Health Network at Toronto General Hospital, Sick Kids re: the living donor paired exchange program that I read about. Michael Garrels, a Transplant Coordinator, told me a package would be sent to me.

I received and completed a multi-page application and mailed it back Tuesday, April 21st. More than 4 weeks pass and I'm wondering what will take place next and when. I get a call from Michael the last week of May and blood requisition forms and other test information sent to me which I receive Thursday, May 28th. I called TGH the next day and Sherry tells me that I should seek out a Life Labs location to give the urine and blood samples. I Google them: http://www.lifelabs.com/

Requisition #1
There's a convenient location downtown and the lab opens early (7:30 a.m.) so I aim to make it there at that time on the next business day. The letter in the package had indicated that if I couldn't get these tests done within 1 month that they will consider me to have declined proceeding with this process. No worries, I'm on it as soon as I can. I have to fast for 12-14 hours. It's only from 7 p.m. Sunday evening till the next morning so it wasn't a big deal. Monday, June 1st I arrive at Life Labs at 55 Queen Street East across from St. Michael's Hospital in Toronto. I take a number (16) and I wait nearly an hour. I have to pee in a cup and get 8+ viles of blood taken from me for various tests. This takes about half an hour; they give me a big orange jug for another urine test and by 9 a.m. I'm on my way to work.

Requisition #2
There are two requisitions so after a minimum of 5 days I need to go back to Life Labs to return the orange jug. Sunday, June 7th I start the 24-hour urine test. This is interesting; I've never done this before. When I wake up Sunday, I pee then record the time as the beginning of the test. I have to collect my urine for the rest of the day for 24 hours. I don't drink wine that day but I do drink some coffee in the morning. I also have a pot of green tea in the evening. By morning, the jug is completely filled! The Monday morning pee is the last deposit then I take the jug to Life Labs.

Monday, June 8th I turn over the big orange jug of pee then I have to pee in a cup again and give a couple more viles of blood. They need to compare the amount of protein in my urine to that in my blood immediately after the 24-urine test. The kidneys are not supposed to process protein. They also look for "waste" levels.

The forms indicated that if my tests are suitable to proceed then more tests will be conducted. It's Friday, June 19th and I haven't heard anything about the next steps. I donated blood this morning and I had to answer "yes" in response to if I've been tested for HIV. That's so odd. I've never been tested for HIV before. I explained the circumstances though and the nurse documented that the tests were "negative".

On the other hand...
I find it important to note that my husband is not in agreement with me doing this. When I got the first paperwork I told him that if I can help somebody with kidney disease or stop somebody from having to get multiple sessions of dialysis every week, that that is a good thing. He tells me I help so many people giving blood, this will help just one person. I know this, but it helps one person in a really big way. During my fast he expresses concern again, saying he should have a say in this - it is the health of his wife after all. And what if I have health issues myself later in life. He would not be too happy if I end up needing something I went to all this "trouble" to give away. I tell him that I'm just getting some tests done right now, that it's too early to be concerned and that I can back out at any time. We'll see what happens...