I was happy to see these videos shared on a donor support page. It was nice to hear about this positive experience!
A Donor's Perspective
How Can You Help?
While we are hopeful that this transplant will go smoothly and my kidney will help Teddy for a long time, he and his family will continue to have medical expenses the rest of his life - daily medications, continued doctor visits, etc. If you would like to help Teddy and his family, here are some things you can do:
1. See that link over there on the right? Click on it to go to Teddy's National Foundation for Transplants fundraiser page, and donate even a few dollars. Send the link to your friends and ask them to do the same.
2. Go to Teddy's Facebook page, Prayers for Baby Theodore, and 'like' the page. Then ask your friends to do the same. By following his page, you can be updated on his journey and will be notified of upcoming fundraisers, including:
3. Bid on an item in Teddy's online auction! There is an ongoing auction being held on Teddy's FB page, and it is full of really great donations! Many items can be shipped, so even if you aren't local, feel free to bid on your favorite products! Send the link to your friends, and, yes, ask them to do the same!
4. Donate a product/service/meal/etc. Email Abby - abby at swingingoatfarms dot com - or send a message on Teddy's FB page. You can donate to the auction or one of the other upcoming fundraisers, or offer to prepare a freezer meal, or provide a restaurant gift card, or gas card, etc. Then ask your friends to do the same!
5. Donate a kidney! You only need one. :) Register with the National Kidney Registry to donate to someone you know, someone you don't know, or to donate when you pass away. And tell your friends to consider doing the same.
Surgery & Recovery
My surgery is planned as a laparoscopic surgery, which should take 3-5 hours. The surgeon will make three or four small cuts on my belly and side, and use probes and a camera to mobilize the kidney. Veins and arteries are cauterized and cut, and the adrenal gland is separated from the kidney and left with me. Fat and fascia are cut away from the kidney, and the ureter (which carries urine from the kidney to the bladder) is clipped and cut. The surgeon will make a larger incision low in my pelvis - which will look similar to a cesarean incision - and will pull the kidney out of this incision. The final step before removing the kidney is to cut the renal artery and vein. The kidney will be flushed and immediately taken 'next door' where Teddy will be ready to receive it.
For a much more detailed (and accurate) description watch this video.
Surgery is scheduled for the morning of Thursday, May 9th. I am expecting to be going home on Sunday, but will cross my fingers for Saturday.
As far as recovery, I have heard a lot of different recovery stories and I'm hoping for the best! My surgeon has said no 'heavy lifting' (which was defined at over 5 pounds, which does not sound very heavy to me!) for 4-6 weeks, but I should also "listen to my body."
I have read stories of donors who were still having a hard time walking around the block six weeks out, and I have read stories of donors who were back to running a (slow) 5k by four weeks out. I am currently in the best shape I've ever been in, and working out four to six days a week. So I am hoping I'll be in the "5k at four weeks" camp, but I am telling myself now that I will take it easy. I am afraid, though, that with two little kids and a gym addiction, that is easier said than done.
My husband will be off work from the 9th through the 19th, so he will be able to take the kids to their last week of school and I will be able to rest as much as I need to. We will likely have a sitter keep the boys the mornings of the following week, or have someone at the house, to help me. We are very lucky to live near our families, and we have a wonderful community so I know we'll be taken care of.
Testing at Transplant Hospital
My round of testing at the hospital was scheduled for Tuesday, February 12th. Testing would include a urinalysis, blood testing, tissue typing, an EKG, chest xray, CT scan, interview with a psychologist, physical with the surgeon, and a meeting and physical with my advocate, a doctor who is not part of the transplant team. All this was to determine if I was healthy enough to donate, and to make sure that they would not be doing harm to me in order to help Teddy.
I was not really worried about the testing - I knew that I was healthy, both physically and psychologically, and I have a healthy family history. My only concern was the CT scan would show some abnormality. My coordinator told me that sometimes they find that people only have one kidney, or a deformed kidney, or kidneys that are attached, or other issues that allow the person so still live a healthy life but would not allow them to be a donor.
Beginning Monday morning (at 5:30am, since that's what time I'd have to get up Tuesday), I had to collect my urine for 24 hours. THAT was quite the experience, especially with running kids to and from school and errands and a meeting that night!
Our boys spent the night with my mom, as we had to be on the road by 6am Tuesday.
I had to fast beginning at 8pm Monday night, with only water allowed. I made my husband eat his breakfast where I couldn't see/smell it. We drove to the hospital, which was about a two hour trip, and parked and found our clinic with no problems.
We checked in, and barely sat down in the lobby before we were called back. (The whole day, I think I sat in a lobby for maybe five minutes total. That was great!) They started right away with the blood draw, which was about ten tubes. When they took the five tubes at the initial testing I felt like it took forever, but it felt like this draw took even less time. They took my big jug-o-pee, and then I could eat a snack. I had just a short time to eat, because then I had to start fasting again for the CT scan.
As I ate my boiled eggs and almonds, my coordinator did my education session. She went over all the testing, how and when the team would determine if I was a good candidate, what to expect from the week before surgery, the surgery itself, immediate recovery, and long-term recovery.
After that meeting, I had to provide another urine sample, and then I met with the psychologist. My husband had been with me the whole time so far, and we assumed he would have to sit in the waiting room for this, but she invited him in. It was a fairly short meeting, just asking about my mental health history, what made me think about donating, and what kind of support I would have after surgery. (Our families all live close, and I have an amazing community of women and families, so I have never been worried about having help during recovery!)
Next I returned to the original clinic and met with the surgeon. (Actually, I have already forgotten what order some of this happened, but whatever.) He was nice, but not much personality. He explained the surgery (another post, another day), asked about my medical history and my family's history, and did a basic physical exam. Answered my questions about recovery and long-term issues.
Then I went to get a chest x-ray; again, I waited only a minute and was out of that clinic within five minutes. Next was the EKG in a different clinic.
All our testing had gone so quickly that we were ahead of schedule; my next appointment was with my advocate, and this was not a walk-in appointment, so we had almost two hours to kill. We went to the mall, where I wandered around while my husband ate some lunch.
By the time we were headed to my next appointment, I was really getting hungry. I normally eat every three hours or so, and this was difficult! I may have been a little crabby...
My meeting with my advocate was great. She is an internist with the hospital, but is not a part of the transplant team. Her job is to do her own assessment to make sure that donating will not put me at physical, psychological, or financial harm. We spent a long time talking about my family history, my own health, my job (she had never heard of a doula, so I was happy to educate!), etc. We also talked a lot about the recovery (again, a post for another day) and how I will handle not being active for that period of time.
She had also received the results of almost all my tests already; all the blood work came back great (interesting to note, I am not immune to Hep B, even though I have been vaccinated for it, which is pretty common), chest xray and ekg were great, urinalysis was great.
The last appointment was my CT scan. I got right into the clinic, and they started an IV. They gave me about 16 ounces of water to drink, and then I had to drink about 8 ounces 45 minutes later. So my husband and I sat in the internal waiting room while that time passed. I had a CT scan after a car accident in 2001, so I knew what to expect. The dye they inject you with during the scan makes you feel really warm all over, and it also feels like you have peed your pants. Very weird. Anyway, if they hadn't been on the intercom, "Take a deep breath in, hold it......you can breathe now." I would have fallen asleep during the scan.
After the scan, we were done! I immediately grabbed my snacks when we got to the car and started scarfing them down; my mood got better right away, I think my husband actually said I was "giddy".
We ate dinner near the hospital and then headed back home; I slept the whole way home, I'm not a very good road-trip buddy.
Next was just to wait to hear from the team. They were meeting the following Monday (February 18th) to discuss all the test results to determine if I was a good candidate. My coordinator told me she'd call me that day to let me know what they said.
The hospital has this great online chart system, so I was able to go online and see all my test results immediately. The next day I checked it, and my CT exam came back normal and even the notes from the psychologist were available; she approved me. So I was just expecting to hear the official "yes" on Monday!
I filled out and sent in my informational packet shortly before Christmas. I received a call from the nurse coordinator, who explained the testing process to me as well as the general surgery and recovery information. She set me up for an initial blood screening. That happened mid-January; I was able to go to a local hospital's lab to have blood drawn (the transplant will take place in a hospital about 120 miles away). It was about five tubes, and it seemed to take a LONG time to get all that blood.
My coordinator contacted me shortly after that to let me know that my blood type is indeed a match for Teddy, and said that as soon as she got the go-ahead from Teddy's team of care providers, we would schedule my "big" round of testing at the transplant hospital. At this time, we were just waiting for Teddy to gain a bit more weight and complete some testing of his own.
The First Step
My first steps on this journey were really just instinctual. I do not know Teddy's family well. We are in the same community (midwives, cloth diapers, babywearing, breastfeeding, natural parenting, etc.), and his mother, Sarah, and I have led groups together, but we don't spend time together or know each other well.
I knew through Facebook (with which I have a love-hate relationship) that they were worried about Teddy's kidneys even before he was born. Sometime after he was born, Sarah posted that he'd eventually need a transplant, and the first thought into my head was, "I'd donate if I was a match."
A little over a year later, Sarah posted that they were making plans for transplant. She had informational packets from the hospital for anyone interested, and again I just thought, "I am going to donate a kidney." Of course, I have thought a lot about this SINCE picking up that packet, but I did not have to sit and think about it before making that first step.
It is hard to explain, but it has just felt right - and from the moment I messaged Sarah about picking up the packet, I knew I'd be the donor.
The thought that keeps coming to me, especially when people ask me why I considered it, is "Someone would do this for me." And I know that. Someone in my life would step forward and help my family if we needed it. And I didn't want to sit around assuming that someone ELSE could and would do this for Teddy.