This has proven to be a pretty hard post to type up. I've been dreading it and since I've gotten home from the hospital life has been a very not-fun roller coaster.
The weekend before Valentine's Day I was feeling under the weather. I figured it was a touch of a flu or virus. James luckily was feeling fine, but because he had just received a really great promotion at work, we decided I should be shipped out to the suburbs to rest up haha. I did not want to get him sick at that point and I figured after Sunday I'd be fine. So he drove me out Saturday afternoon to my parents' house where I thought I was already feeling much better and would be back home with James in no time. Unfortunately my condition simply got worse, to a point where I was nervous to fall asleep at night because I could not draw in a full breath in any position except laying upright, propped up on pillows. Also my vision was blurring intensely and in the mornings I would wake up with swelling in my face and lips. It was odd, of course. I haven't been raised in a house that really goes to the doctor, so it was a huge deal when I said I needed to be taken to the doctor, which could then only be the ER on Valentine's Day evening. I couldn't go upstairs with out feeling like I'd run a marathon and my vision was only clear 5 inches in front of my face. I couldn't even watch television to feel better. I also didn't know how I would sleep that night, feeling like my lungs were closing in.
So my parents drove me to the ER which is 2 minutes from their house, where I grew up. When I was checked in my blood pressure was insanely, dangerously high. A huge surprise. I never thought I had a blood pressure issue, it never would have occurred to me. They scanned my head, they scanned my chest. I was so nervous something would be wrong with my head since I had been getting very bad 18 hour headaches recently. When the doctor said I needed to stay for the night, I still remember the alarm and worry..I was just so nervous about telling James! If he knew I had to stay for a night he'd be so worried and he was all the way in the city. Still, one night in the hospital was a huge deal for us and eventually my family contacted him and he came out right away. I've never been sick. They took me to the intensive care unit and hooked me up to all sorts of things I'm not familiar with because I hate hospital shows and movies. I don't remember when they put two and two together, but they eventually figured out that it looked like I had kidney failure. Totally random and foreign to me.
The next day I had a procedure that allowed me to begin dialysis treatment to flush out all of the toxins in my body that my kidneys will no longer clean out. Because my kidneys were not working correctly, fluid had been building in my lungs causing the difficulty in breathing and my heart is only working at 35% trying to keep up with unusual pressure of everything. It also explained the facial swelling and the high blood pressure which caused my vision to blur. It was all very scary and intense. And just unreal. So unreal. I was on bed-rest for several days and finally out of ICU and into ICA Thursday evening.
They couldn't schedule a biopsy until Monday Feb. 20th, so it sounded like I was going to to have a restful weekend leading up to it..turned out I needed more dialysis (thought I'd get to skip one day) and an MRI on Sunday which I was super nervous about. It's just a totally scary word and like I said, I've been having horrid headaches and my vision being poor was a bit scary. They just wanted to be sure nothing was up. I tried so hard to keep cool, but made the mistake of watching as I went inside the tube. That was a huge mistake which totally rushed my body with panic and claustrophobia! I knew there was nothing I could do though and I think I did a pretty good and quick job at calming myself down, never opening my eyes again. I'll tell you, all the weird, experimental music I have listened to through out my life was so helpful sitting in there for 20 minutes. I heard parts of Eno, Stereolab, Can, Aphex Twin, Neu... I later found out that James and my family could hear it as well, from the waiting room. So loud!
The MRI eventually came back clear and fine (yay!!), so it looks like I just have a big stress in my eyes from the blood pressure that will hopefully return to normal eventually. It's pretty annoying to not be able to see correctly. When I was able to get out of bed and walk again (which in itself was a surprising challenge!), it felt like I was in a video game! Like my vision, was not my vision. It was extremely odd. Plus the weird lighting in the hospital halls and rooms was not helpful. Anyway, I can see way more than 5 inches in front of my face now, but I'd say my vision is at 70% where it should be normally.
I thought I was going to get to leave the hospital Tuesday, the day after the biopsy. But they kept me until Friday afternoon. I was there for 10 days..still so hard to believe. I guess what I have is called RPGN (rapidly progressive glomerulonephritis) /IGA nephropathy, and it is extremely rare. Like 1 in 10,000. That's me. Fun times. I have begun treatment to try to attack / prevent more damage- I have to go to a local dialysis center for 4 hour treatments 3 days a week, I am on a strict diet where I can no longer have very important things like french fries, beans, cheese, tomatoes, ice cream, chocolate, hot dogs (I would kill for a milkshake and french fries right now)...and once a month I will get a Chemo treatment through an IV. I am scared that this will be the rest of my life. I go through phases..I feel like, how can this be the rest of my life?? I am so young. I remember a month ago when everything was totally fine. There are so many things I want to do. James and I were at a point where we were doing more than just talking about very serious life plans..We were thinking seriously of moving to California..we were talking of kids (which I may not be able to have any more..it remains to be seen after all of this treatment)..talking of dream jobs..business goals..projects with friends..right before I got sick we booked a special little trip to California in April. It was going to be so much fun..around our 9th anniversary together and we were going to try and see one of the movies playing at the TCM Classic Movie Festival, because it was a movie that we'd watched together on our very first date! SIGH. But I am not able to travel for a long time now.
It's all very hard to understand.
My main doctor is very respected in his field. He says we need to waid 6 months and see how it goes. In the meantime I will be 'as week as a kitten'. He said we are not at a point to talk about transplants yet. However, Friday, another of my doctors basically told me that I will most likely need dialysis for the rest of my life, and that even if I get a transplant, there is noting to say that I won't eventually need another transplant.This was very disheartening, and I still don't know how to make of it. I cannot picture this being my life.
I am having a hard time feeling inspired or excited about anything. All I can do is really watch television. I don't like reading blogs or shopping or thrifting..I can't go out for a dinner or drink. For the first time I feel envious of others and I want my life back. I want to be happy again.
I can't dress normal because of the access for dialysis on my chest. And I have to have my mom help me wash my hair over the side of the tub. If I get the access point wet, it will cause an infection that will go immediately to my heart. I haven't had make up on since Feb. 10th. And I've lost a ton of weight so I don't even feel like myself.
James and I are staying at my parents' for now. He drives to work and will pop back at our apartment to see to our sweetie cat Constable. I have been using my old room here as storage, so I need to clean it up so we can have our own space, rather than sleeping on an air-mattress in the living room. Then eventually, hopefully, we can introduce Constable to our family cat, Hobbes. That is something to look forward to, haha.
Yesterday James was able to take me back to the apartment so that I could get a few things. It was so nice to be back there. I miss it so much. We snuggled with the cat and I couldn't help but pretend things were back to normal. Oh now I'm going to cry... I just can't imagine things not going back to normal.
Apparently you can eventually travel as a dialysis patient. Apparently they have dialysis centers at places like cruise ships, Disneyworld, Reno and Las Vegas. So if that gives you any idea of who is normally on dialysis? I don't get it.
I am so thankful that James and I were able to do so much last summer. We took our annual spring Detroit trip, our huge road trip out west, we stayed a couple nights right on Lake Michigan where we were swam (something I cannot do any more).. We had a very lucky summer. James has been so wonderful over these past few weeks. I am so fortunate to have such a strong, loving guy. I am also lucky to have such wonderful family and friends. All of your kind words mean so, so much to me. So, so much.
I am trying to get to a point where I feel comfortable opening my business again. I want to..but I am also nervous that I will become overwhelmed....or that it will not fulfill me the way it once did. My mom and James have been helping me..I am almost caught up with orders placed right before I went into the hospital. Once that task is complete I guess I'll access things. It's hard to see the point right now, I guess. I sort of feel like a ghost, you know?
Anyway, that's the long and short of it I suppose. Thank you for keeping up with me. If you want to send me anything, I think I may put my current address in my Facebook profile. Snail mail is pretty exciting these days, but truly, I wish I could get one giant huge hug from you all..daily! :)
EDIT: I've added a new blog category, for better or worse, "for your health / weird times with my kidneys" if you'd like to keep updated with what's up! ..plus it would be super sweet to come across someone who has had or even has known someone who has had what I do (RPGN (rapidly progressive glomerulonephritis) /IGA nephropathy) and / or a kidney transplant. xoxo