On Being the Wife of a Transplant Recipient

So, the kidney transplant happened.

On January 20, 2015, my husband received a kidney from his cousin, Alicia.

Eight days later we celebrated our third wedding anniversary.

It was the best one yet.

Needless to say, the beginning of 2015 has been quite busy (but in a good way). And now, almost two weeks later, we’re still adjusting, although it’s been a fairly easy adjustment all things considered, and it’s much better than the alternative (dialysis or, y’know, death).

Mostly I feel relieved and grateful. I mean, right now the kidney’s working great and it looks like I’m going to get to keep my husband for many, many more years. But I guess I’m just too used to living at a high level of stress, and now that the transplant has happened I’m trying to find new things to stress about. *shrug* That’s just how I roll, I guess.

What I really wanted to write about, though, was what this whole experience has been like from the perspective of the spouse and caretaker. There’s a decent amount on info out there for kidney transplant recipients, some for live donors, and even less for loved ones and caretakers. I know random people find this little website, and if someone else is finding herself (or himself) in the position of loving and caring for someone in need of a kidney transplant, I want them to be able to find at least a tiny bit of first-hand, anecdotal information.

So what is it like?

Kind of scary, especially when you receive that initial diagnosis. My guess is that it doesn’t matter if you’ve been married for two years or fifty-two years, it’s going to be scary when the doctor tells you and your spouse and the person you love more than anything is in End Stage Renal Failure (ESRF) and needs dialysis and a kidney transplant in order to live. If I’m being honest, “kind of scary” doesn’t really cover it. That night in the hospital, I had a full blown panic attack. And God knows my emotions have been all over the map ever since then.

But then dialysis starts, and you get into a routine. Everyone’s routine will differ, especially depending upon what type of dialysis is being administered and the location of treatment (meaning at a clinic or at home). For us, Phillip had a perma cath that was put in place while he was in the hospital. We knew about a fistula, and would have gotten one had we not gotten lucky and known we had multiple potential live donors. But since we were pretty confident the transplant was going to happen quickly, we held off on the fistula (the nephrologists at the dialysis clinic had also agreed with us).

Hemodialysis is a bitch (that being said, everyone responds to it differently). Every Tuesday, Thursday and Saturday morning we got up at 4:30 and got to the dialysis clinic between 5:00 and 5:15 for his 5:30 chair time. After weighing in they would hook him up to the machine, I would put on a paper gown, and the party would get started. Most mornings that party consisted of us both reading and one or both of us awkwardly passing out while doing the head bob that comes with falling asleep while sitting up. Phillip would dialyze for three and a half hours, and sometimes would have to be cut off early if they took too much fluid off and he started to cramp up. We got into a routine of swinging by Starbucks afterward so that I could get some caffeine, and then going home. Phillip would sometimes eat breakfast afterwards, sometimes he wouldn’t. But he always went up to our bedroom and passed out for at least a couple of hours afterward, if not more than that.

Dialysis days drained him.

Our routine would vary sometimes, if our friend Andi took him to dialysis on a Saturday morning so I could sleep in, or if we were going out to the ranch that weekend (then I would load up the truck while he was at dialysis, pack up the dogs and then pick him up before heading out of town, and he would sleep during the five and a half hour trip out to west Texas). Most days, though, it stayed the same.

Phillip was lucky in that he was never put on a full renal diet, so he was still able to have potassium and phosphorus every now and then (his labs were always pretty good). I think the fluid restrictions were hardest on him (48 ounces a day isn’t a lot), especially if the way he’s drinking fluids now is any indication (now he’s drinking like a gallon of water a day). Sadly, we’re still having to watch his potassium, even after post-transplant, but the doctors seem to think it’s because of his meds and not necessarily because of anything else. (Pro tip: sodas in glass bottles made with pure cane sugar tend to have either no phosphorus or very small amounts of phosphorus in them, if you ever find yourself having to watch your phosphorus levels…plus, they just taste better *g*).

We got to where we had certain nurses and techs that we really enjoyed having, and others we didn’t. There was one nurse and tech–who happen to be married to each other–who are just awesome people and amazing at their jobs. We loved having Mitch (tech) and/or Lauren (nurse), and Phillip’s last day at dialysis Lauren hugged both of us and almost made me cry with her very sweet words. The people at the dialysis clinic become a part of your lives, and you’re bound to form attachments to at least a few of them. In fact, after Phillip’s transplant the clinic (and Lauren) was one of the places I called, and when the admin picked up he immediately asked me how the surgery had gone (ah, the wonders of caller ID).

For us, we were thrust into dialysis and transplant at the same time. Most people in ESRF have time between the two, because they’re aware of their kidney function beginning to dwindle. Those folks are able to get a fistula before dialysis even begins, have time to mentally and emotionally prepare for what’s ahead, etc. Since we had no clue Phillip was THAT sick, it was like being thrown into the middle of the Atlantic Ocean with our feet and hands tied together and being told by a maniacal pirate that we better learn how to swim. And then a shark comes along. Followed by Jonah the effing Whale.

Yeah, that’s kind of what it felt like.

Only worse.

Or maybe I’m just being melodramatic. But it was still pretty shitty.

The world of transplants is fascinating and scary and exciting all at once. There’s a lot that goes into it–blood work, medical exams, psychological evaluations. Not to mention the fact that you have to wait for insurance to approve the pre-transplant workup (which isn’t the same as insurance approval for the actual transplant itself), and then after all the pre-transplant stuff you’re presented to the transplant committee, and whether or not you’re even eligible for a transplant is decided by like five people. Even when you logically know that you’re a good candidate, it’s still stressful waiting for that phone call telling you that the committee approved you.

Then there’s finding a live donor (in our case, since we’re talking kidney here). Phillip struggled with even thinking about asking someone to donate a kidney. Me? I had no such compunction. He’s my husband and the love of my life, and I was going to do whatever it took to find him a freaking kidney and get him healthy so that we could celebrate many, many future wedding anniversaries.

Since we were going through Baylor in Dallas (insurance would only approve a handful of transplant centers, none of which were in Austin, which added to the stress since Dallas and Austin are three hours apart), I took to social media and shared the link for people to fill out the preliminary application to be a live donor. I usually keep my Facebook posts friends only, but I made those posts public because, by God, I wanted people to see them. Now, you’ve probably seen stories online recently about people sharing photos with their cute kids saying, “my daddy/mommy needs a kidney transplant” and how strangers are seeing these viral posts and donating their organs to a perfect stranger can live.

They’re heart-warming and touching and make me realize that there are some really awesome people in this world. Those types of posts are also frowned upon by Baylor (and quite a few other transplant centers, FWIW), and you can only receive a kidney from a family member, friend, or acquaintance. They want the recipient and the donor to be connected in some way, for ethical reasons but also because, IIRC, research has shown that it’s just a better experience all the way around. So I shared the link with all of my friends and family, and it got spread around to members of Phillip’s family who I wasn’t friends with yet on Facebook. Well, we quickly all became friends (that’s actually been a really great side effect of all this–I’ve gotten to know his cousins much better than I had, since we’re down in Austin and they’re mostly in the Dallas area), and it was quickly apparent that people were rallying around us.

There were times when I cried happy tears because of the outpouring of love and just because of the simple displays of basic human decency. We hear about so many bad things on the news, see so many awful things on Facebook and Twitter, that it’s easy to forget that there’s genuine good in this world. While this process was emotionally exhausting, it was also emotionally uplifting, and I’ve come away from it so very, very grateful that we have so many amazing, kind, giving, loving people in our lives.

There’s a lot of waiting, and a lot of not knowing what’s going on. When you’re waiting for a transplant, not knowing what’s going on kind of sucks. And then everything happens really, really quickly. Like, crazy quickly.

We found out in December that Alicia had been approved, but nothing was officially scheduled until the beginning of January, like two weeks before the transplant (luckily, we’d been told by Alicia that the surgery had tentatively been scheduled for the 20th, so we had some time to prepare). And then it was dealing with FMLA since Phillip’s continued to work (if you ever find yourself or your spouse needing dialysis, try to keep working–make dialysis fit around your life rather than fitting your life around dialysis), more insurance stuff, hospital paperwork, my work, etc.

The day before the transplant we had to do pre-op stuff at Baylor, like having a bunch of labs drawn (they cross-match one more time prior to the transplant), meeting with the transplant nephrologist and the transplant surgeon, etc. For us, we ended up having to wait about three hours past our scheduled time to meet with the transplant nephrologist, but that was okay since he was otherwise occupied performing a transplant from a cadaver (they’d had two cadaver transplants that Monday, which meant two people got very happy, unexpected phone calls, and that’s a GREAT thing). It’s funny how after dealing with this stuff for months you think nothing of talking about transplants from cadavers.

The night before we had supper with Alicia and her husband, Jerry, and then came back to Phillip’s grandfather’s and tried to get some sleep. I was nervous and stressed–so stressed that just the night before (so Sunday night) I’d unwittingly binged a bit and ended up literally making myself sick (I may or may not have pulled over twice and puked on the side of the road, and then again in Granddaddy’s front yard). But we got up the next morning and went in fairly early. They drew more labs, and then we went up to the pre-op area and sat around with Alicia, Jerry and Alicia’s mom Vicki. Aunt Christi showed up a little later (Phillip and Alicia are cousins on Phillip’s dad’s side, so their parents are siblings), followed by Phillip’s parents, his sister, and Granddaddy. My dad and stepmom were going to come up from Waco, but Dad woke up that morning sick as a dog and couldn’t make it (don’t worry, Dad–I totally forgive you *g*). We sat around and talked for a while about random stuff, and then Alicia was called back to pre-op holding. About an hour later, Phillip was called back to pre-op holding, which is where he changed into his hospital gown and started getting ready for surgery.

By this time I had one hell of a migraine (I needed to eat since it was around noon AND I was super stressed out and tense), was trying not to freak the eff out, and Phillip’s lying on the gurney in his hospital gown massaging my shoulders trying to calm me down. Shouldn’t it have been the other way around? Probably. But he’s always been the move evenly keeled one in this relationship.

After a little while they brought him a little paper cup with some pills in it.

His first dose of anti-rejection meds.

At that point it really, REALLY hit me and I teared up and said, “Shit just got real.”

Eloquent, I know.

A little while later they wheeled him back to the OR, I gathered up our stuff and went back out to the waiting room we’d all been in. The entire time I was walking from the pre-op holding area to the waiting room I was choking back sobs, trying to hold it together, but as soon as I walked in and saw Becky and Burt (Phillip’s parents) and Tiffany (Phillip’s sister) and Jerry, I just lost it.

To be honest, I didn’t cry as long as I figured I would, but damn, did I cry hard on Becky’s shoulder. I realize how lucky I am to have such amazing in-laws, and to have a family like Phillip’s that has completely embraced me as one of its own. I don’t break down in front of other people generally (I’m not super great at showing vulnerability to people who aren’t my husband), but I just couldn’t hold it in. I mean, they’d just wheeled my husband back to open him up, put a freaking kidney in him, and change our lives in a really drastic way. Bundled up in that was a lot of relief, a lot of sadness that Phillip was even having to go through this in the first place, a lot of gratitude for Alicia, and a lot of fear of the unknown.

What if he didn’t make it through surgery?

What if the kidney didn’t work?

What if the kidney worked then his body rejected it?

What if the kidney worked just fine for years but then he developed cancer thanks to the anti-rejection meds and I ended up losing him anyway?

Yes, I’m a bit of a worrier, but in all fairness I have two friends who have had transplants (one a bone marrow, one a liver), and both have had battles with cancer, so it’s a very real fear that I have.

The next few hours were nerve-wracking, but the Baylor staff is fantastic, and they called me about five minutes after they started operating to let me know they’d begun, and then updated me again in an hour to let me know how things were progressing. When it was all done, the surgeon, Dr. Kim, came out and told me everything had gone beautifully, that Phillip was doing great and that the kidney seemed to be working.

Relief.

We went and visited Phillip in the ICU. At first, it was quite comical, because the drugs they’d given him for the surgery were pretty amazing. He kept telling his sister he loved her, kept telling his mom he loved her, kept telling  me he loved me. I mean, I know that Phillip’s a genuinely sweet guy, but that’s not a side of him that anyone else really gets to see.

Unfortunately, the comical relief came to an end within a couple of hours, when the doctors began to worry because the kidney wasn’t producing enough urine.

Usually, a kidney from a live donor will start producing urine (and lots of it) immediately. Every now and then they’ll have one that’s slow to wake up, or there will be a clog in the artery that they put in. So they ordered an emergency sonogram. About halfway through the sonogram the transplant fellow left the ICU, thinking everything was okay with it, that it was just slow to wake up. They told me and Phillip’s parents that everything was fine, to go home or get a bite to eat. I went back to Becky and Burt’s (which is about a 30 minute drive from the hospital) and had just finished eating when the hospital called me at 9:00 p.m. to tell me the surgeon was afraid something was wrong and that they were going to open Phillip back up. Becky looked at Burt, told him he was driving me to the hospital, and off we went.

Dr. Kim called me as we were pulling up to the hospital and explained what was going on, that they were just being very aggressive because they refused to lose the kidney. I rushed up the 4th floor ICU and caught them as they were wheeling Phillip out of the room. I somehow managed to hold my shit together, and the nurses were super nice and pushed down the arms on his bed so I could kiss him. Phillip was out of it, but knew something was wrong and all I could do was tearfully reassure him that Dr. Kim was going to save the kidney.

I was admittedly freaking the fuck out.

About an hour later Dr. Kim came out and told me everything was fine, there was no blockage and the kidney had started to produce a lot more urine. They don’t know for sure what happened, but they think he might have been retaining fluid, and the fluid was compressing the artery and keeping it from getting blood to the kidney so that it can produce urine. They had to use staples to put him back together, though, along with a pork mesh (they’d only had to use glue before). Burt and I stayed until just after midnight, waiting to see if Phillip would wake up. He was out cold, so we left, I picked up the truck and drove over to Granddaddy’s (which is about a thirty minute drive, and that’s one drive I honestly don’t remember much of). I passed out, allowed myself to sleep til 7:00, showered and headed back up to the hospital. When I got up to ICU Phillip was sitting up, joking with the nurses.

Even better?

There was a TON of urine in his catheter bag.

RELIEF.

The next few days were honestly really busy. We had to get him up walking pretty quickly. We had to meet with the entire transplant team (while they were on rounds), the dietitian, the social worker, the transplant coordinator, and it seemed like tons of other people. But itwas such a happy experience, which is such a contrast to when he was in the hospital back in June.

Almost two weeks out I feel like we’ve adjusted pretty well and have gotten a routine down already. He has to take his temperature twice a day, his weight once a day, we have to keep a 24 hour urine count, and we have to monitor his blood pressure. We have clinic visits three days a week right now, and his labs are constantly being monitored. I get his pills together in the mornings (for both morning and evening times, since he takes meds at 9 a.m. and 9 p.m.) and write down his data for now (I think he’s going to create a spreadsheet where he can just write that stuff down himself in the future). They’ve told us to just live our lives, don’t be afraid of going out and being around people (just use common sense, like don’t go to a movie on opening night, instead go to a matinee, don’t go to restaurants at peak times, etc.). He can still love on our dogs, and the dogs can love on him (within reason, right now we’re keeping them away from his face and trying to keep them from leaning against his incision or giving him paw and accidentally scratching the staples). In a weird sort of way, the thing I’ve chosen to fixate on is that I can no longer pet every dog I meet (I’m the epitome of crazy dog lady), unless I know for sure that they’ve been properly vaccinated. It’s probably because our dogs are over at Phillip’s parents’ house, but I’m having serious puppy withdrawals (yeah, I totally cried during the Budweiser commercial during the Super Bowl last night…such a brave little puppy facing that big, bad wolf…I’m tearing up right now thinking about it).

The biggest thing is making sure meds are taken on time. They took out his dialysis catheter last week (yay!), so he can finally stand under the shower and get clean (with the perma cath, I had to cover it with plastic wrap and he had to use a hand-held shower, which was just easier to do with my help). They’re probably taking the staples out next week, which will be nice. Luckily, he’s progressing nicely and the kidney’s working like it should. We’re not out of the danger zone yet (yeah, one thing I didn’t know until after the surgery was that rejection typically happens three or four weeks after the transplant, once you make it past that time period you can breathe a lot easier), but they all seem to be confident considering how good his labs have been, how much urine he’s putting out, etc. (Plus, they took out the dialysis catheter, which is a damned good sign.)

Now that we’ve gotten Phillip taken care of, I need to start taking care of myself again (I’ve been lectured a few times about this over the past week or so). I haven’t done a great job of that since last June, and have let a lot of things kind of fall to the way side (I’ve at least maintained my weight and haven’t gained anything else, which is good). I’ve had two instances in the past couple of weeks of eating too many carbs, not enough protein, and eating too much too fast to the point of making myself sick, which isn’t good. I’ve admittedly never been very good at self care–when I was younger I didn’t feel like I deserved to take care of myself, and now that I know better I still have trouble actually doing it, and most days I don’t even know where to start–but I’ve got to start taking care of myself. Yes, Phillip’s my world, but what good does that do either of us if I run myself into the ground? None.

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