Monday, March 05, 2012

what has happened

Hello Friends,

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 remains to be seen after all of this treatment)..talking of dream 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! 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


  1. hello...
    wow, this is crazy overwhelming, you must still be in shock to have so much to take in in so little time.
    just imagine all the people in incredible circumstances progressing beyond what's known in the moment, just try to take one day at a time and be gentle with yourself.

  2. Oh Caitlin, my heart sank as I read this! I'm so sorry about everything that's happening. I want you to know if you need ANYTHING at all, please let me know! I'm rooting for you, and I wish you the absolute best because you deserve it. again please let me know if you need anythinggggggg!!



  3. That has to be such a shock! I can't imagine having to absorb so many life changes all at once. Here's hoping that you'll be able to have some sort of recovery soon.

  4. Caitlin. We used to be buddies on LJ. It's been forever. I came here via your friend's link on Twitter. What terrible circumstances under which to reconnect. I just want you to know that I'm thinking about you, so glad you have your loved ones around you, and rooting for the best.

  5. What a shocker for you!! I am so sorry! Sending a big bug and lots of good thoughts your way.

  6. Caitlin. Wow. I know it's not always helpful to hear other people's stories as things are different for everyone, but my mom suffered kidney failure in 2005. I gave her one of my kidneys in 2007 and it is still going strong. Life is crazy. Bad surprises are the worst part of it, I think. Adapting afterwards is so strange. You are awesome and brave and I would like to start a petition to get Robert Osborne to read you film histories during dialysis. Epic hugs and more to you!

  7. What an awful situation! Wishing you all the best during what must be a very difficult time.

  8. Oh hon! This sucks so much, I'm so sorry. Thank goodness you went to the ER, though, and that they figured it out. How scary and insane.

    Sending you so much hope & goodness and hoping things get a lot better soon - maybe amazing leaps in medicine will happen, you'll figure out your magic diet that makes you feel ok, and you'll regain your strength and your life. You're so creative and inspiring.

    Resting & healing & coziness to you.

  9. Caitlin, my heart goes out to you. I know you'll find a way to adjust and make it through this new stage of your life. Know you have tons of love and support!

  10. Oh, Caitlin. So many tentacles, here, for you to tangle with. I'm sorry this is happening, and I'm thinking of you and James with crossed fingers & best wishes. I've got to believe that, in time, you'll find your equilibrium here, and can begin to build your life back up. Tell me if there's any way I can help, and know that you have lots of love coming your way!

  11. so much love to you, sweet caitlin. all i can tell you is that you've got so many people in your corner- people you've maybe never met!- and we're sending our best wishes to you. i'm so sorry you're going through this.

  12. Hi Caitlin- it's your cousin Jenny :) So very very sad and overwhelmed to read your comments. I've been keeping up through the family chain on what's been happening, but have only heard little bits and pieces. Just wanted to let you know that you are so very much in my daily thoughts right now and I sending you all of my love.

  13. Wow, I'm so sorry to read about your illness. It sounds like you're being incredibly strong. I'm glad you have a lovely partner and close family to support you during this time.

    I hope you are feeling more like your vibrant and clever self again soon. Whether you choose to reopen your store again or not... just remember there's a whole load of people out here in the internet who really care about you.

    Elle x

  14. It saddens me to read this. I am going to be thinking of you and hoping everything will be okay. I can not even imagine what you are going through but it is great to know you have such a loving family, and James to be there for you. Keeping you in my thoughts...


  15. i'm usually the most verbose girl ever but i always completely clam up when it comes to expressing sympathy, that being said... i'm wishing you so many good thoughts, caitlin! and until you can do things other than watch tv, i hope that you find some awesome shows to get wrapped up in. maybe a psychologist wouldn't agree with me, but whenever things, well, f**king suck in my life or my mom's we always go to the movies together & try to escape our own world for a bit.

    virtual hug.

  16. oh man caitlin, i am so sorry. this is rough. i hope everything gets better for you soon and that you are able to get some relief. you are one of the most creative & talented people i've had the pleasure of internet meeting! i'll be sending you only the best vibes.

  17. i love you so much dear friend.

  18. Oh Caitlin!!! Sweet sweet girl. Thank you so so much for sharing this with us. It truly shows how giving and caring you are..sharing this with us. I know it is the very last thing many would like to do in such a situation.

    Aaron and I both want you to know just how much we care and wish we had the ability to bear some of that pain for you.

    We are both in complete tears over here and wish that we could just give you lots and lots of hugs.

    We LOVE you to bits! And have been thinking of you non stop.

    Stay strong, and know that you have so many behind you!

    Love you!!
    xo Jenny...and Aaron

  19. Sending up prayers and good wishes for you! Wishing you strength and courage, and many blessings!

  20. I am so sad to read this. How crazy to have your life shift so dramatically. I will be thinking of you and hoping for the best. If there is anything I can do to bring a little sunshine I would be happy. I am not on Facebook but if you send me your address I will mail you something.

  21. Sending lots of love and a big hug.

  22. Oh Caitlin! Thank you for this, it's so good to hear from you, it's incredibly honest and my heart goes out to you! I'm glad that you have such a support system to get you through home and we're cheering for you through this online community! All the best.

  23. You are amazing! You are so blessed to have so much love around you! My order just arrived, so many thanks because it's beautiful. Best of luck with everything.

  24. Hello Caitlin,

    I am a friend of your Mother's and was so saddened to read this.
    Just want to say my thoughts and prayers are with you and your family.
    Best wishes and hoping for the best for you.

    Sending hugs

  25. Oh Caitlin. I am sure this is a very hard thing to adjust your mind to. I hope you are soon able find peace and happiness again.

  26. Caitlin,

    It's Mo. First - I love you. So very, very much.

    Second - you are so strong. I always have known this, but you are showing it now in a very powerful way. I cannot imagine what you are going through, but you are not walking this path alone. You have your family, your wonderful boyfriend and your circle of friends who are on this journey with you.

    Third - when we are at our lowest points and in our darkest hours, we have the unique and fleeting opportunity to see exactly who we are. You will learn more about yourself and become your own kindred spirit in a way you may never have imagined. God gives us a chance to see everything clearly when we feel we cannot move another muscle, walk another step or look forward to another minute. It is in these moments that we realize we are loved beyond all recognition not only by others but by ourselves. The joy you always have had in your heart is transcendent during these lows and it will help you cope even if you do not realize it. That's how powerful the human spirit is. We just have to make sure we do not miss such a special opportunity to see our true mettle. I know you already are seeing it. It is because of that strength you had the ability to write this powerful post.

    May God hold you in the palm of his hand. I love you so, so, so much. You are in my constant thoughts and prayers.

    Love, MO XO

  27. wishing you a speedy recovery, and well wishes. i am new to this blog and think your work is beautiful.
    get well soon, margot

  28. Hello, I found my way to your blog via Anabela from Fieldguided. I really am so sorry you've been ill, that's awful. Wishing you all the best and sending you all my good vibes.

  29. I found your blog through your beautiful etsy shop. I'm so sorry you've been so sick. I'm sending good thoughts and am thinking of you and your family.

  30. How's the new age healing working out?...

  31. Hi,
    I found you through Mollie Makes and your blog. Sorry to hear about your struggles. Sending positive love and strength to you. One day at a time love Julie x

  32. Hi Caitlin

    I am not a usual reader of your blog, but I just read this post and I wanted to give you a virtual hug, even though we don't know each other. What an overwhelming thing to happen to you! I got diagnosed with a serious lifelong illness last year, and although mine is not as physically debilitating as yours, I understand what it is like to see all the plans and hopes and assumptions you had about your life get snatched away. It feels so so so so unfair and it can trigger a kind of depression that is far worse than the illness itself. However, I have had about 6 months to figure things out, and I want to tell you that time does wonders. Eventually you come back to yourself and you figure out a new normal, sort of. It's not perfect and it's not the same as it was before, obviously, but that horrifying disconnect grows less and you will feel like you again, and it will be a relief. So have faith in yourself and keep coping and you will get there. Lots of love xxxx

  33. Dear Caitlin -

    I just want to say that I'm so, so sorry this has happened, I can't even fathom what all of this must be like for you. I'll be keeping my fingers crossed and sending good vibes your way, and I hope that things start getting back to some kind of normal soon and that it's all good news from here on out. Good luck with everything.

    - Greta, from the Anthro days :)

  34. caitlin,

    thank you for writing this, i know how hard it must have been to put it into writing...

    i am so sorry you have gone through all of this. you are in my thoughts and prayers...

    i know we have only spoken on etsy , but you have been so nice that i feel i know you.

    when you are feeling up to ypur california trip, let me know if you have any questions or anything i can help arrange for you.

    kind regards,


  35. This sucks. I'm so so sorry. I don't know what else to say except I hope it gets better and lots of people will be thinking of you. All the best.

  36. Awww Caitlin. I'm so so sorry. You have always been such a sweet, happy light for me to see at all the fairs we've been in. I'm so glad that you have your parents and family And James. I remember reading your blog years ago, actually when I was struggling through my own life changes of my mom dying after a long illness and I felt so alone in the world- no family to drive to or stay with, no significant other, just me. But I remember losing myself in your posts about some great fabrics and thriftily finds you had scored and your enthusiasm inspired me to find the good things, the little treasures in everyday life to hold on to. I read about a picnic or date you and James had gone on, or something you had designed and it really reminded me to look for special moments. I'm so sorry you are going through this. You are in my thoughts. I know, having read your most recent post prior to this One, that you are starting to find those special little everyday treasures. Keep us all posted!

  37. I wish I could give you a big hug right now! I'm a nursing student so everything you said is eerily familiar to me and I can tell you right now that a normal life is possible. You seem to have a good doctor and a supportive family that will help you get through this trying time <3 Best of luck dear. Keep your chin up.

    <3 Sarah

  38. I just linked over from your Etsy shop, which I was opening so that I could link to it while I mention the beautiful banner you created for my wedding day last year. I am so saddened to read this post, because I know that after the brief interaction we had working together that you are such a sweet person. I wish you the best.

  39. hi caitlin,

    i hope that you are doing well...

    i just wanted you to know that i responded to your message on etsy right after you sent it but the auto response is on so i am not sure that you got it.


  40. Hi Caitlin - my name is Caitlin, too : ) you don't know me, but I found you and your beautiful etsy shop through a renegade craft fair pinterest board. I just wanted to tell you that I was very touched by your honesty, openness, and strength. I went through a health scare (extreme pain in my abdomen and chest) a couple years ago that put me in and out of the hospital for months, at one point the doctors thought it was cancer.. I'm also young (25 now, 23 at the time) and healthy and had the same thoughts of confusion and disbelief.. I didn't want to craft, shop, eat, or even talk to my friends because they were 'healthy' and, to be honest, I was jealous.. I didn't want to do anything but watch old movies. I know exactly how it is. It was a very rough time, add to it how angry I was angry that doctors couldn't figure out what I had or even how to start to treat it.. I finally decided to just put it out of my head, that everything would settle and that I couldn't let it take control of my life.. not an easy thing to do, especially for an obsessive person like me... thankfully, it turned out to be a rare case of parasites that were attacking my spleen, which I had picked up on a trip to China. They usually move for the heart right away but in my case they had stuck to the spleen - which I was able to have removed. i feel like I got extremely lucky and it could have very easily been different, causing lifelong health issues or even death... I don't really have any sage advice or wisdom, but I just want to let you know that you're not alone, that things usually find a way of getting better, and that I hope you do find a way to get back to what you love, because you are a very talented and gifted person.

    Nothing but love and best wishes to you - Caitlin

  41. Oh Caitlin, my heart sank as I read this! Seriously I am so, so sorry. I'm so glad you live near your parents and that you have them and James for support. I hope things get better soon. Sending love and warm thoughts your way Caitlin! xoxo

  42. This post made me cry because I know how you feel. I had cancer at 25 and a recurrence right before my 30th. I was told I had a 50/50 chance of making it through the next 5 years. I am now pushing 34, in the meantime I fell in love, and now I'm contemplating babies. Maybe it will happen, maybe it won't. But I've learned so much through being sick, I am stronger and nicer and I learned to really value my life, my relationships and myself. I really value myself so much and I don't think I did that before.

  43. @anonymous thank you so much for this comment. It is nice to hear from someone who has retrospect. I can say that I am learning a LOT about life and myself...and at times I can even feel as if it is a gift to learn these things and be able to grow and become a better person. I will try to remember this as I turn 30 this June.
    I am so glad to hear you are doing well and planning your future. If you ever want to talk feel free to email me! <3


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