It’s a little ridiculous that I’ve never blogged my whole story. It starts before I started blogging, so it’s always seemed like such a daunting prospect. I had it all written out in a Word doc that’s long lost, and have had the best of intentions to retype it, but other things always get in the way.
For those who don’t know, here’s the Reader’s Digest version of my health history:
Oct. 1999: Admitted to ER coughing up blood, diagnosed with pneumonia
1999-2000: Various doctor visits tell me that it’s not pneumonia, but they aren’t sure what it is.
Feb. 2000: A gastroenterologist changes my life with the diagnosis: Goodpasture’s Syndrome, and I’m admitted to the hospital for the first time, for almost 7 weeks.
Feb-April 2000: I go through about 40 days of plasmapheresis to treat the Goodpasture’s, and am started on hemodialysis to “take the pressure off” my damaged kidneys and give them a chance to recover.
July 2000: I’m told that my kidneys aren’t recovering, and that I’ll need a transplant. I’m referred to UCSF for evaluation, and start my potentially 7 year long wait for a donor kidney.
August 2004: My incredible mom gives me a kidney. It allows me to go to Europe on our honeymoon, and I get pregnant in late 2007.
April 2008: Max is born at 28 weeks after I develop sudden and severe pre-eclampsia.
Oct. 2008: My transplanted kidney has failed and I’m back on dialysis.
Sept. 2010: Jamie’s brother, Tim, gives me a kidney. We’re able to travel to Jamaica as a family, and make several family trips, allowing Max to check off 15 states in just 7 years.
Nov. 2012: Rejection episode, I spend Thanksgiving weekend in the hospital.
And basically, that brings us to now.
Last Sunday, I got winded emptying groceries from the car, so I went and got my labs drawn. I figured my iron was low, and that I might need to start my supplements again.
By Wednesday, we were making plans for me to be admitted for a biopsy. My transplant care is done through UCSF, so I headed into San Francisco on Thursday morning, and the biopsy was scheduled for Friday morning.
They placed a subclavian on Friday morning, did a session of dialysis, and then did the biopsy. (Which sucks rocks, btw)
Saturday afternoon, I got the news we didn’t want to hear, and plans were made for me to continue dialysis on an outpatient basis from home in Fremont. Basically, after 7 years, my transplant has failed and I’m back to square one, on dialysis, hoping for a transplant down the road.
I posted on Facebook, letting folks know what was going on, and offered to answer questions… I’ll answer them the best I can.
Before I get into those, here’s where we are now: I’m on a M-W-F dialysis schedule, which means I’m in the clinic, about 10 minutes from my house, for 4 hours, three days a week. I’ll go on the machine at about 5:30, and get home at at like 9:30. Looking longer term, I’m hoping to switch to peritoneal dialysis, which I’ve done before, and I can do at home while I sleep. It’s better on many fronts, but takes some time to prepare for, including a surgery to implant an access in my belly. I’ll be doing the in-clinic hemodialysis until we can get PD set up, so probably a few months.
How can I help? I don’t know right now. I do know that we’ll need help with Max, when Jamie travels for work. We’ll need someone to come hang out with him at our house sometimes, because I won’t get off dialysis until after his bedtime. While his BFF’s mom is an incredible help for us, this is going to be more than I can ask of her, so if you’re local and able to hang with my kid until 9:30pm or so occasionally, please let me know!
This is also where I’ll tell you that I’m terrible at asking for help. I don’t like being an inconvenience, so I don’t ask. (Unless you’re my mom) I’m not going to tell you that we could use a dinner being dropped off, or that Max needs to get away for a few hours. I’m telling you now that I’ll always say I’m fine, that I don’t need anything.
Can you get another transplant? I need to be evaluated in order to get back on the list; the wait right now is 7+ years, and I don’t know when that time will start. If I’m lucky, I’ll find a donor to shorten that wait. Which leads me to the next question…
Can I be tested to donate? First of all, you have no idea how much this means to me. I will be pursuing living donation, but I’m not there quite yet. If you’ve made the offer already (I’m overwhelmed) I am not going to follow up with you, but if you’re serious, thank you. Do some research, and let me know if you still want to proceed with testing. My insurance only allows me to test one person at a time, so I can’t just have everyone tested and then pick one… it’s a long process, with lots of testing, so I’ll have to pick and choose who gets tested and when. But basically, I’m not in that place yet, but thank you.
What’s your favorite color? Purple and red. Purple in general, red for clothing. And Max’s favorite color is yellow.
What’s your Amazon wish list? I’m super awkward about answering this (see above) but I put together some things on this list. Folks are asking what they can do for Max, too, so there are some things on there for him as well.
How can we support your family? Keep us in your thoughts; unlike with gun control, thoughts and prayers are totally appropriate here and appreciated. Also, reading my blog helps, between ad revenue from page views and affiliate link purchases on various posts. I’m also working on updating my t-shirt shop, so shares and purchases there are hugely appreciated.
What color are your socks? Important questions from a first responder friend. I got TWO fancy pairs of grippy socks at the hospital, both grey and yellow. You’re so jealous.
May we have an address to send you happy thoughts? Yes, Max and I both love mail! Send me a FB message for my mailing address.
How are you feeling? I actually feel ok, and almost wish I felt worse so I wouldn’t be so annoyed at all of this. The biggest pain at this point is that the catheter is really uncomfortable, and limits my use of my right arm for a while until it heals. The “renal diet” is so lame: low sodium, low potassium, low phosphorus. While my blood pressure isn’t bad, and my potassium is generally not a problem that I need to be really aggressive in managing, low phosphorus is like the worst thing ever. All the best foods are high in phosphorus: dairy, beans, whole wheat, chocolate, and beer are just a few of the no-nos that I really struggle with. NO CHEESE you guys.
What’s next? I’m going back to work, taking it all one day at a time. I’m planning to still get some work done while I’m on dialysis (at least they have WiFi at the clinic now, a new addition since last time) and am actually hoping to be back here writing more often too.
I think that’s it for now. Like I’ve said before, consider me an open book when it comes to this stuff. If you have questions about my story, dialysis, donation, anything, just ask.