I don't know if it was the election that finally broke me, but something did, and I just felt the need to crawl up in a ball and block out the outside world. People that I once thought of as good people or friends said or wrote something that flipped a switch in me that made it impossible to go back. I've realized that I have a lot more acquaintances than friends. There are a handful of people that have really been there, been patient with me. I think they understand that this is hell for me, but they continue to reach out to let me know that they're still there when I need them, and they don't harbor resentment towards me for not always being in touch. THAT is a true friend to me.
I read something that made me laugh out loud at the irony of my own situation. It was an article that someone had written who had spent time volunteering on a children's transplant floor at a children's hospital. One of the things she noted in her list was the fact that these kids are surrounded by an army of supporters. Prior to the transplant, I would've said that I had an army of supporters, even though a large majority of them were "virtual". I felt supported and loved, both by my friends and by Adam's friends. But things have changed over the last year, and that bubble is gone. I am partly to blame for this because, when things started to get really bad, I kind of shut down. It's totally normal for people in my circumstances, but it sends signals to people. These people may want to reach out and offer support, but they're worried about "bothering me", so they don't. And it all ends up with me feeling very lonely, pretty much most of the time.
This feeling has been exasperated in the last few weeks. The day after the election, I deleted Facebook from my phone. I realized that it had become a place that caused me literally nothing but anxiety. I haven't deleted my account, and I occasionally pop on there to see what I missed (absolutely nothing), but it has deepened the isolation. There are just a few souls on this planet who understand, but they don't live next to me. Talking to them online doesn't always replace a comforting hug, or a friend you can look in the eye and REALLY tell them what's going on in your head while having a cup of coffee. There just aren't that many people.
I was listening to a podcast Monday on my way home from a hellish day at Mayo, and it was about a person who had experienced several traumatic and life-changing events in the short course of a few weeks, and she articulated something I've been feeling for a long time. I no longer care to have small talk....I'm in for the "big" conversations. I think this comes across as aloof or disinterested to many people I encounter, but that isn't the case. My mind constantly swirls with big things, like:
- What in the hell is happening in this country?
- Am I doing right by Izzy? Will she grow up to be ok? I mean, I'm not exactly the brightest spot of sunshine.
- Will I ever work again?
- Will I ever contribute to society again?
- Who am I now?
- What's the next awful thing that's going to happen to me?
Speaking of that last statement, I just got off the phone with the dialysis access clinic at Mayo. This was an unexpected call notifying me of an appointment scheduled for an ultrasound of my fistula and an office visit with my vascular surgeon (the doctor who surgically created my fistula back in April). My nephrologist emailed my vascular surgeon last night noting concern that my fistula hasn't developed any further and that we were starting to have problems accessing a vein for the return line at plasmapheresis (all true, although we kinda knew that the fistula wouldn't really get any bigger). My creatinine is also pretty high now at 3.6 as of Monday (I was fairly dehydrated that day so I knew would be higher, but even without that it's still high) and dialysis is starting to appear on my horizon. Even though I've always known it, it's still crushing. I cried some....I'm sure I'll do it a lot more. Wow....it's just so disheartening. They scheduled the ultrasound for Friday at 1:30pm, and then an appointment with the surgeon next Wednesday at 3:15pm. These make 2 extra trips to Mayo that I have to make. The following is how this week has gone so far and what next week looks like, because this is how my world is now:
Previous week: I've been nursing a slowly-building cold for several days now. It's mostly been sinus drainage, but it started to move into my chest on Sunday. I've been a little miserable because I can't take any decongestants due to blood pressure, so I just kind of have to suffer through it. It's most likely viral, so an antibiotic doesn't do much. I also seem to have now frequently-recurring case of pinkeye that moves back and forth between both eyes that's caused from allergies and my cold. It seems like this is going to be a frequent visitor for me now that I'm immunosuppressed.
- Monday: I had labs and plasmapheresis at 9:00am. The two veins we've been using for the return (in my elbow) are both filling with scar tissue and it's getting more difficult to insert the IV cannula into (they use larger ones than normal IV cannula's due to the high flow rate). We were finally able to get a line in my forearm, but these hurt a lot more. I've had it done once before, and the treatment goes fine but the swelling/pain/bruising that occurs a day after is hard to deal with. I'm unsure why it happens, but most likely is that the vein doesn't clot as fast after they remove the cannula, and I never like the bandage wrapped tightly around my arm because it makes my hands swell. Once we got up and running, I took my meds, and within an hour I was vomiting. It comes on fast when it happens, and I'm 95% sure it's due to the labetalol I take for high blood pressure. This is the first time I've ever vomited from the morning dose though. I get nauseous from the afternoon dose, and it happens with some frequency in the evening dose (I even threw up at an Adele concert). This is concerning on many different levels, but mainly because this BP med seems to work, and it's hell trying to find a new one that won't negatively impact my kidney or potassium levels. And it's not exactly convenient to be worried that you might throw up at any one of 3 times a day. I was happy to have a kind nurse who held my hair while I vomited into a waste basket on the side of the bed (she was giving me calcium at the time due to the plasmapheresis treatment, and she had to use what was closest). Such a glamorous moment. I had been able to see my doctor prior to all of the drama, and he noted that I sounded pretty terrible and looked fairly pale. He had noted that my IGG levels were really low the last time he checked them, and that it was time for an IVIG infusion to bring them back up again (to help fight off infections). I dread these because they take usually between 4-5 hours, but he got it scheduled right then and there for the afternoon, so once PP was over, I headed over to the infusion center. They were running behind, and I didn't end up getting the IVIG started until more than 2 hours after my appointment time started. There were issues with the initial IVIG bottle that they had (it was the wrong one) and then I had to take tylenol and benadryl and wait 30 minutes for them to start, so it took forever. I have always had reactions to IVIG (or really any infusion made from a blood product) and Monday was no exception. My doctor ordered an IVIG for reaction-sensitive patients like me, and it worked relatively well back in March when I had it, but we realized about 2 hours in that THAT IVIG wasn't the one that I was receiving. We never got past the initial starting flow rate because my BP rose dramatically (they start large-molecule infusions really slow so as not overwhelm the heart). I kept feeling worse and worse and it was getting harder to breathe, so I asked the nurse to check again that the infusion I was receiving was the exact same one that I received the last time, and that's when she noticed that they were different. She was able to get a hold of my doctor and we stopped the infusion (thankfully, because it feels as though it would've ended badly for me). I felt REALLY wonky after we stopped (it was difficult to talk and I was having trouble walking), so I hung out in my room for another hour, just resting and waiting for a bit of normalcy to return to my body. I hadn't eaten anything since I threw up earlier in the day, and it was 6:30pm by the time I left the infusion center. I stopped and got a baked potato, ate it in the car and then drove home. What a fuck of a day.
- Tuesday: I woke up with a headache, so I took a couple of Tylenol at 7:00am and headed back to bed. I woke up at 9am to take my morning meds, and a half-hour later I was vomiting again. I'm going to overshare for a moment here and tell you that I pee myself whenever I vomit. Adam's kidney is situated kind of on top of my bladder, and no matter if I make it to go to the bathroom before I vomit, it still happens. It is the most demeaning thing that's happened to me (and that's saying a lot) and is especially worrisome since I vomited in the morning 2 times now. It didn't happen at Mayo, which I can't really explain except that I was sitting in a bed with my legs up instead of hugging the porcelain god. No matter....it sucks, it feels horrible, my eyes swell shut and my lymph nodes swell so much in my neck that it nearly disappears (my neck, that is). I'm loud when I do it, and it terrifies my daughter when she hears it. Imagine, for a second, what it must be like for Izzy to watch this and hear it but not know what it all means? God, it rips me to pieces every day. I showered quickly, washed my clothes, and then headed to the sofa downstairs and closed my eyes for the rest of the day. I somehow managed to find the strength to drive to Izzy's school to drop off her guitar (guitar lessons on Tuesday) and then drive back 2 hours later to pick her up, but was horizontal every other moment of the day. I started to worry that I should go to the hospital by the end of the evening. It was getting harder to breathe, and my fistula arm is still swollen, but I was worried about the risks. If I go to an emergency room, and tell them everything that's wrong (swollen fistula arm, reaction to IVIG 2 days prior, a hemoglobin of 8.4 and a creatinine of 3.6), they're going to freak the fuck out and possibly make decisions that could do more damage, and I honestly didn't think I had enough physical energy to fight for myself. Because that's what it takes. There isn't anyone else to fight for me. Joacim has pretty much no idea of the specifics of it all, so he isn't any help. I have to be fully aware of what's going on before I step willingly into an emergency room because I just don't trust that they'll know what to do. I took some medicine for a migraine and nausea, and was able to get some sleep last night.
- Wednesday: Today I woke up without a headache, and my face is slowly returning to normal (I don't even bother to take pictures of the weird things happening to my face because it's just the same variation of freaky and awful). My chest hurts like hell, and the cough is deep, but I'd still rather wait until I go to Mayo tomorrow to have them check me out. I'll make it through this day.
- Thursday: I have PP at 9:00am, and then we're going attempt the IVIG infusion again at 11:15am. I'm thinking about driving down early to be there at 7:30am to see if I can get the ultrasound done early so as to not have to drive down again on Friday. It will make for a very long day, but worth it if I get it done.
- Friday: My plan for Thursday probably won't work so I'll need to drive down for a 1:30pm ultrasound
- Monday: Another PP treatment and a 2nd dose of IVIG. Another full day spent at a Mayo.
- Wednesday: I have a 3:30pm appointment with the vascular doctor/surgeon. This is the ONLY time he available and in clinic until January, so there's no changing this one. But Joacim will probably come with me because I'll be a wreck, which means I'm going to have to find someone willing to take care of Izzy until we get back.
- Thursday: Another PP appointment and most likely a blood transfusion. Again, I'll be here all day. It's very concerning that I'm so chronically anemic. My last blood transfusion was near the end of September, and I give myself a shot every Sunday to boost it, but nothing's working. This is a big problem in the long run because no one knows why I'm so anemic, and it's unrealistic to expect to get a couple of units of blood for the rest of my life. And my blood pressure will get really high so we'll have to keep the flow rate really slow and it will take foreverrrrrrrrrrrrrr.
It's impossible to stay positive right now. I'm not even going to pretend on here to see a bright side. There isn't one. Every bit of it is being sucked out, and there's no replenishment of good stuff. I can't get the full joy of watching Izzy do all of these amazing things because I'm stuck in thinking about all of the ways my health limits her and all of the things that she'll do in her life that I'm going to miss. A few weeks ago, I made the ridiculous comment that if things continued to stay relatively stable, I could see trying to go back to work for a day or two per week. That seems completely ludicrous right now. How in the hell am I supposed to be hopeful about ever going back to work when I'm spending so much time trying to stay alive??? Do anybody have any idea the emotional and physical effort that is required to keep doing this with literally not even a faint glow at the end of the tunnel????????
I'm pretty sure that my surgeon is going to want to do a surgery on my fistula to make it longer by adding a graft (grafts don't last as long as fistula's, so this sucks), or he's going to want to create an entirely different one higher up on my arm (also terribly shitty). That means another surgery (most likely before Christmas) which I'm terrified of. It also means 3 Christmases in a row now of some sort of medical nightmare (2014: started PD, 2015: recovering from transplant still as well as surgery to create peritoneal window to drain excess fluid, 2016: fistula).
The last surgery on my fistula was INCREDIBLY painful, and I can't imagine trying to enjoy the spirit of the season in that much pain. How in the hell will I wrap a present? How will I cook? How will I enjoy anything?
I shut down the automated service I used that posted these posts to Facebook. I think people lost interest in my story when they finally realized that there would be no happy ending to this. Maybe that's why I stopped blogging too...because I felt like no one really cared. I am sure that people's intentions are good when they say things like "sending prayers" but honestly, prayers aren't going to help me, prayers aren't going to give me a hug when I need it, prayers aren't going to cure my FSGS and heal this kidney.....I need a huge medical breakthrough. That doesn't just go for me, but for anyone dealing with a bad situation. There are just so many other things that people can do.
This post turned out to be much longer than I had anticipated. I have months of things I want to write about, but I know I'll never be able to catch up, and I've missed a lot of the emotions I was swimming through at the time. I know I'll regret it, but it couldn't be helped.
