Donate Life

I wrote this not long after donating my kidney to my Mom last year. I’ve updated it recently and as we rapidly approach the one year anniversary, I feel compelled to beat the drum and educate and encourage people who are considering this. I wrote this because as I was recovering I recognized that I had not seen an account that tracked with my experience and I saw no accounts of folks who had participated in paired matching or the incompatible donor process. There are links below to more information and I hope that the information below is helpful to someone considering giving or accepting this gift.

Tuesdays at Hopkins

Tuesday is transplant day at John’s Hopkins Hospital in Baltimore, Maryland. Almost every Tuesday of the year someone shows up at 0630, signs forms, goes under, and wakes up with no memory of giving a piece of their life away. Some people marvel at the sacrifice and I find it hard to convey just how benign a sacrifice it is. Sacrifice to me is something that you suffer to give; a career set aside to raise a family; a dream deferred to allow another to pursue theirs; the countless ways in which a parent’s life is never their own; those are sacrifices. Sacrifice doesn’t let you float in the ether and awake with the worse part over. What I did was share. I had two and only needed one. So it was not a sacrifice, it was gift that I really hoped would fit. I donated my kidney to my mother on 28 Nov 2006.

Day 0; Surgery

I had breakfast the day before and then a clear liquid diet (read: ungodly amounts of Jell-O) for the remainder of the day with no liquid after midnight. I don’t believe I will ever look at Jell-O the same way. I reported to the hospital at 0630 the day of the surgery and had to give a urine sample and have blood drawn. I had an IV placed, signed consent forms, talked to anesthesiology, and before they wheeled me to the OR, they gave me something to “relax” me. I do not recall a single thing about the surgery. My first post surgery memory was being instructed to help them get me into my bed. I had no pain and recall seeing my brother before going back to sleep. The next time I woke up, which may have been 30 seconds later, someone was explaining that I had a pain pump, that my semi-lucid requests to have my catheter removed, to get up and walk around, and to have something to drink could be revisited the next morning when the doctors came around.

Day 1

I felt a vague discomfort but nothing on the level that I expected and the moment I thought I had sensation of any kind, even if it was benign, I hit that pain pump. I wasn’t going to be one of those folks who got behind on
pain management; I got my money’s worth. All day I was after my nurses for removal of the catheter and now I am unable to recall whether it came out late day one or early day two. I got my first meal, broth and Jell-O. I ate neither. I drank water and had some apple juice. My throat was
not sore from the breathing tube but I tried to eat a cracker and could not chew that thing to save my life because my mouth was not producing saliva yet. Even taking tiny bites and huge swigs of water, that graham cracker fought
me. In the end, I managed to eat half of a half of graham cracker. Saliva is definitely underrated.

Day 2

Catheter was definitely out by day 2 and I also had my pain pump taken away. They gave me oxycodone, docusate (stool softener), and something for the bloating discomfort that was a result of the gas they pumped into my abdomen
during surgery coming home to roost in my intestines. Like everyone who had the laparoscopic procedure has shared, this was very uncomfortable and the most distressing part of the recovery. To add insult to injury, I started my period as well. They gave me some weird mesh panties and some pads. Not fun. I also had no appetite and did not eat which made the medication difficult to tolerate so between day 2 and 3, I also threw up. Also not fun. I asked for something milder so they gave me Tylenol but it was largely ineffective at mediating the pain so I was not up and at ‘em as much
as they wanted me to be and I wasn’t eating or resting well either. The irony of Tylenol was that they could only give me so much in 24 hour period because of toxicity to the kidneys. At least that’s what they told me.

Days 3 and 4

The notable things here were that on day 3, after I was repeatedly assured that no amount of persuasion was going to bring my pain pump back online, my wonderful nurse got permission to have me get a morphine injection via IV
followed by a Tylenol chaser. They continued to offer me oxycodone and even offered me oxycotin in conjunction with oxycodone to give me more continuous pain relief. I did not have the pain at the incision sites-those were sore, but not painful, I had terrible back and left side pain which was the result of their agitation of a major abdominal muscle during the nephrectomy. I was concerned about nausea/vomiting since I still wasn’t eating and refused both. I did have my mandatory bowel movement on day 3 with the assistance
of a suppository. It still felt like what I imagine childbirth is like and did not leave me with the satisfied non-bloated feeling I was hoping for. I did some walking around and did do a lap around the floor with the assistance of my IV pole. I didn’t have any IV’s in me by day 3 but they left both lines in my hands. I was drinking enough that I didn’t require
intravenous fluids but I still was not eating. Late on day 3, I
requested an Ensure and it was the best thing over ice that I’ve ever had. I was running a fever (approx 100.1) between days 2 and 3 that the doctors attributed to me not getting up enough and/or using the breathing toy. I don’t know if it was the Tylenol or just the passage of time but the fever went away by late day 3. Day 3, I was also given permission to use tampons instead of pads. Day 4, I was discharged. I was also finally allowed to take a shower. Both Halleluiah events. Regarding the shower, I still had IV’s in both hands so they saran wrapped and taped my hands so the
IV’s would not get wet. I had no external stitches and what I assume was some sort of dermabond was secured with numerous small pieces of sticky thin band-aid like material that came off bit by bit for a few weeks after the surgery.

Pain Management and post-surgery complications

No matter what I took, I had lingering discomfort under my ribcage and in my lower left abdomen. A CT scan two weeks after surgery revealed that I had fluid in both areas. The fluid was not cause for alarm as I was told the body will get rid of that in time but it was lingering source of discomfort. It made it a little laborious to breathe deeply and made me continue to feel bloated. The remaining discomfort was easily managed with Tylenol extra strength. I usually only needed one. I took the oxycodone maybe
twice. I also had uncomfortable heartburn and could not sleep through the night with out getting up to burp. I came down with the stomach flu about one week after the surgery and that was a significant setback in recovery
and might have been related to the heartburn and nausea during the night that I had prior to the onset of the stomach flu. Through it all, the pain at the actual sites was not notable. It was Tylenol sore, no hard stuff required. What did hurt and did not respond well to Tylenol or oxycodone
was the lower back and side pain. The back pain was largely gone by late week two, early week three but my surgeon did prescribe flexoral (which I may have taken once), a muscle relaxant, for the back pain. The heartburn and reflux continued well into week 2 and made the mornings very rough as I woke nauseous and burping. It would always get better as the day progressed and I got moving but it made it hard to eat because everything gave me heartburn. The thing that I finally tolerated well? Egg drop soup. The heartburn was eventually resolved although I did still wake up burping for about five weeks.

Coming up on week three, after two weeks of gut wrenching failed to produce any extra pain or discomfort in my abdomen, I bent over to put something less than five pounds under the Christmas tree and got a stabbing pain in my
lower left incision area that made it hard to stand up straight. It felt like something between a pull and a rip and I can best describe it as kind of a runner’s cramp but in your belly. The theory is that an internal suture was pulling or that something that was previously healed together came apart a little. Neither is serious but both hurt. At worse, I could have herniated internally so we watched for fever or increasing pain. If it hadn’t got better in a few days, per doctor’s instructions, I would have gone back to the hospital for another CT scan.

Around week 5 or so, I noticed what I had previously assumed was a tiny scab in a couple of spots on my abdomen and navel was instead something that resembled fishing line poking out of my body. I called the hospital who
instructed me to pull the line taut with a pair of tweezers and then cut the line close to my body so there wouldn’t be anything poking out. I was a little freaked out but I did as I was instructed and have had no further issues of that sort. I could easily forget that the entire surgery ever happened in terms of any lingering discomfort, sensation, or side effect.
When I’m on my stomach and arch up on my hands (like an abdominal stretch in yoga) there is a sensation, a tautness in the general area of the surgery but that is the only reminder that I ever had surgery.

I wanted to share my recovery because it might help someone else better manage their expectations of their own recovery from this major band-aid surgery. I thought I would be lifting weights, shopping, taking long walks, and taking frequent naps. Instead I found recovery to be a bit of an
uneven process. While everyday was better than the previous in some way, some days were a step back in my overall feeling. Be patient and be prepared to do less than you expected. I also found it hard to determine the optimal
level of activity vs. rest. However, it seemed that no matter how bad I felt, it was worth taking at least a short walk. It always made me feel a little better, even if it tuckered me out a little. If you can’t get out of the house, I found an i-pod and some dance music to be a great mood lifter and something to keep the body moving. I couldn’t do my usual break dancing moves but I got my body moving and my heart pumping a little. I recommend salsa music. If you are single and live alone, having a friend or relative stay with you for a few days is a LIFESAVER. My best friend came down for 10 days and I don’t know what I would have done without her. I would also recommend building an e-mailing list to keep everyone updated on donor/recipient condition. The phone calls the first two weeks were overwhelming, even though the sentiment was greatly appreciated.

And my mother? Well, my mother and I are not compatible and she required seven plasmapheresis treatments prior to the surgery. As a result of that and the blood thinners, she had post transplant bleeding and had to go back into surgery twice following the initial transplant operation. She spent the remainder of that first week and weekend in the ICU and the following week, had to go back into surgery and have her spleen removed because her antibodies were not going down at an acceptable rate. I don’t regret donating but I must say that I did not euphorically float through my
recovery, buoyed by the joy of giving and the expressions of gratitude. I’m sure much of that can be attributed to my mother’s lengthy post-surgery complications and the seven months it took for her to be even a little better for having done this.

For those considering this, if your recipient is already on dialysis and, specifically peritoneal dialysis, the dramatic pre/post transplant energy and general sense of well being may not happen. Because peritoneal patients don’t have a buildup of toxins in their blood, it was our experience that they feel relatively good before they have a transplant. It may take some time for them to not feel like the cure (transplant) isn’t worse than the disease. My mother had considerable stomach upset for the first 7 months. Her hair thinned considerably. Already thin, she has lost even more weight. Her energy level was very low and her mornings were pretty rough; sometimes waking with headaches, sometimes weak in the legs, and always with a slight drug induced tremor in her hands that stayed with her throughout the day. Close to a year later, she is doing better by leaps and bounds and had returned to work. She is unfortunately suffering a chronic and rare type of rejection of the kidney but she is otherwise doing well. As a result of the rejection the doctors have not reduced her immunosuppressants which leaves her at increased risk of melanomas. We chose our battles.

For the purpose of managing expectations I believe it is also important to note that for the recipient, the transplant is just the beginning of a new medical regimen. I believe they all feel it is worth it, free of the tether of dialysis but even in the best of cases, I believe it is far from easy. I am honored to be a part of this community of donors and of the recipients who had the courage to take a chance at a better quality and quantity of life. As I’ve not seen many accounts of incompatible donation on the web, I offer the following links for more information about this process. My mother and I participated in the positive crossmatch and sensitized patient program but started out in the paired kidney exchange program.

http://www.hopkinsmedicine.org/Transplant/Programs/InKTP/index.html

http://www.hopkinsmedicine.org/transplant/Programs/InKTP/InKTP_brochure.pdf

A final alibi for federal employees; you are likely eligible for 240 hours of paid non-charged leave. The regulations are on the OPM website and likely also in your particular organization’s HR regulations. I asked my HR folks and they told me that I would have to use my Sick/Annual leave. When I showed them the regulation, they apologized and made sure that everything was taken care of. My time was recorded as excused absence.

**Graphic from http://iamareyou.files.wordpress.com/2008/11/thanx_hands_rgb.jpg