Who knew? Clinic days are good days.

It’s funny. I’m actually having a hard time writing about my good days. I didn’t intend for this whole blog to a giant whine. I really do have some easy days.

I honestly like my monthly PD Clinic.

Part of the process on PD (as with HD) is to get blood taken for labs once a month. Sure it’s a little bit more of a hassle when you’re on PD. I have to make a special trip to have the blood drawn as opposed to HD when the blood just gets taken while you’re hooked up to the machines with no extra needles.

The thing is, I adore my medical team. I always spend more time than I really have chatting with my PD Nurses. We joke and talk about vacations and movies. They’re really wonderful to talk to. I see them when I pick up my orders for the blood work then I drop off the samples that get sent to one of my transplant centers. To the other transplant center, I spring for the postage myself and overnight the sample.

Usually the following week is when I see my entire team: Nephrologist, PD Nurses, Social Worker and Nutritionist.

At the beginning of the appointment we get my weight and blood pressure. I give my Nurses my flow sheets (the tracking forms on which I record daily weight, blood pressure, dialysis solution and vital drainage stats) and we go over my medications every month.

Each member of the team visits me in the exam room, we chat, they answer any questions, discuss medications and nutrition and my overall well-being. This last time I brought cookies because my nutritionist keeps hassling me about the recipes I’m always going on about.

Oh, and I rock my labs like crazy.  I love bragging about my numbers.  Basically,  with the exceptions of PTH, Creatinine, and the specific anemia markers, my numbers are just about perfect. I’ve even been able to forgo iron infusions for the last four months.

I seem to be the anti-patient.

This is part of what makes PD work for me. While I do keep an eye on my phosphorus and sodium intake, I’m able to eat almost whatever I want – as long as I keep the protein and leafy greens intake high.

Lets face it. My good days are boring, but I kind of love them. I lucked out with my medical support team. I like that my doctor gives me crap and tries to keep me grounded about how well I’m doing right now. He reminds me that what’s most important is that I while I may feel pretty good right now, I am in Stage V. There’s no getting better, no rebounding, just treatment which includes transplant. He also reminds me to drink as much fluid as I can right now because there will come a time when I’ll be on fluid restriction.

My nutritionist asks me for recipes while she give me tips. I even share the correspondence from my transplant centers with my Social Worker to keep her in the loop.

Pro tip: Being your own advocate may be exhausting but it’s vital to your treatment. Your health team is there for you, use them and ask plenty of questions. Keep them in the loop even when, especially when that loop has you going in circles. Not only will you surprise your team by keeping them informed, but you’ll get positive feedback for it too.

It’s 4:30 am. Do you know where your REM is?

If you’re lucky, you’re not up wondering. Around the same time every night (ok, morning) sometime around my 3rd drain and my 4th fill, I wake up to pee. This happens even if I don’t drink a lot close to hook-up time. I know, science tells us this isn’t good. That we need our sleep. That with my body fighting all the time, I need sleep. I figure I’ll sleep in 4-6 years, what I’m told is the wait for a new kidney.

Honestly, I don’t get that bothered by it – at least I don’t think I do. Even as a kid I remember waking up several times a night. A childhood friend’s mother told me last year that I prepared her for her kid’s teen years early on. When I was around 4 or 5 and they kept me overnight, she woke up to strange noises in the middle of the night. She said she found me in the living room with a snack and the late, late show. I told her I did it all the time at home.

But I digress.

Not enough sleep is supposed to be bad for you. When your sick, it slows the healing and adds to your stress. Lack of sleep on top of being tired all the time makes me a rather volatile girl, I can own that. So, around November of last year I asked my social worker for a list of therapists because I felt like my life was falling apart. I was falling apart.

I couldn’t get through a monthly checkup without bursting into tears. I was having a really hard time holding it together with all of the new  crap: daily blood pressure checks, having to get clearance from my cardiologist for oral surgery, getting on the transplant list, the appointments, the dialysis supply deliveries, handling my advocacy on my own, the aseptic technique that had taken over my bedtime preparations, not being able to just fall into bed at night, my roommate’s seeming antipathy and the feeling that she was competing for “who’s got it worse”,  moving, the implosion of a friendship. Yeah, I needed someone to talk to.

I started seeing a social worker for therapy. Even though I have a hard time sticking with therapy, it’s amazing how much better I felt being able to bitch to someone, guilt-free, for an hour a week. I really do advocate psychotherapy. I like to refer to it as having a best friend you pay so you don’t have to deal with the guilt of over-burdening her/him.

The only snag I hit was that I found after about 6 months that I really didn’t like her. She had crappy billing practices that forced you into paying her for a missed appointment for any reason. During this time I started losing my voice and this “professional” decided that despite doctor’s advice for voice rest, I should keep my appointment with her and talk for an hour. Also, during this time I was working for a psychiatric group and having issues with one of the psychiatrists. When I would complain about him, I wouldn’t give his name because I didn’t want to even be perceived as slandering him. One day during a session, she leans forward and says conspiratorially: “I just gotta know who he is”. That was the moment I decided to fire her. It felt like she wanted gossip and I wasn’t about to give it to her. Plus, saying that was WILDLY unprofessional.

I don’t want you to worry. I really had also stopped feeling any real catharsis after our sessions. It had helped. I just wasn’t getting anything out of it anymore.

I’m also still better.

As part of my dialysis treatment plan, I’m given a quality of life questionnaire by my dialysis social worker. When I took it last year, my score was basically a zero for how my life was impacted – which is bad in a social worker keeps looking at you worriedly kind of a way. A zero means I can barely get out of bed in the morning because all of this is so difficult. This year (I took it at my last monthly visit), my score is significantly higher – proof that coping has finally kicked in. Phyllis, my SW, was thrilled.

If I get overly stressed again and the crying beast rears its ugly head, I’ll be sure to seek therapy again. Of course there is also a monthly transplant group at my transplant center. I just have to warm up to them which is…weird. I am by far the youngest person in the group by about 15-20 years. That is, except for the one lady who isn’t on dialysis yet but has joined the group in preparation for eventually needing a transplant. Yeah.

Pro tip: Find someone to talk to. This person can be a friend, family, priest, therapist, etc. I suggest someone who is ethically and professionally (and perhaps legally) obligated to keep your secrets. Honestly when it’s their job to listen,  it really is easier to unburden yourself.