Visiting Cedar Sinai

A long day....

Our check in time at Cedar Sinai was 6:15am--yikes! Apparently they do intake sessions every Wednesday.  There were about 12 of us getting assessed on that day.  We were all required to bring someone with us.

Of course, there was paperwork.  There was coffee, pastries and fruit.  We were told to bring our own snacks and lunch.  I also brought my comfort blanket ;)

They took my weight, blood pressure and temp, then the day officially started with all of us watching 45 minute video talking about kidney donors and kidney recipients.  Afterward, every one was assigned to an exam room.

Over the course of the 7 or so hours, everyone who would be associated with my case came to the exam room to speak with us. First up was a young, cool nurse with a good sense of humor. She was there to get an EKG.  She asked me to remove my bra and then straight up just hiked my sweater up over my boobs and started putting the contact pads on me with Seth sitting directly in front of me!  As you can imagine, he could not stop staring, despite the fact that my colorful balloon dog print Lululemon leggings were pulled up and over my Buddha belly. Or maybe he was staring because of that.  In either case, when you've been married as long as we have, this situation definitely qualifies as "getting lucky," LOL.  And I'm pretty sure he was having flashbacks to when he was a kid and saw boobs for the first time in National Geographic, the Africa issue. ;)

The lovely nurse was followed by the nephrologist, the living donor coordinator, the transplant surgeon, the nutritionist, a social worker, the financial coordinator, and finally the transplant nurse.  Across the board, I think I can confidently say that none of them had any concerns about me being a great candidate for transplant, assuming further testing does not reveal anything else wrong with me.I was definitely the youngest, thinnest and healthiest patient there that day.

I'll let you decide for yourself what it might have meant, but when the social worker was assessing me, asking about my support system, my history with any drugs, alcohol or mental illness, I didn't fail to notice that suddenly Seth was hot and took his jacket off... LMAO.

After all of the talking, all that was left was a chest x-ray and some labs.  I get blood work every couple of weeks now (the girls at the clinic know my name, like Cheers, but different...), so I'm not squeamish about blood draws at all anymore.  While sitting in the chair waiting for the nurse to pull the test tubes, I was playing on my phone.  After about 20 seconds, I thought to myself, my goodness, that's a lot of tubes!  And still, he kept pulling them.  Twenty one in all!!  A personal best!

Luckily I have a good vein and good blood flow.

After he was done drawing the blood, he was attaching a label with all of my info on it onto each tube.  After labeling all 21, he said, "oops!." Um, there are really no instances that I can think of in a medical situation in which "oops" is a good thing.  Apparently, he had missed pulling a test tube.
While it really wouldn't have bothered me to be pricked again, what he did instead was call the lab to see if they could use any of the blood in one of the other tubes to run the missing test.  They said yes :)

Some of the tubes of my blood, along with the extra label he forgot to pull a tube for....

As I mentioned in my first post, I just need to have a few more things done (pap, mammo, cardiac stress test and pneumonia vaccination) and my case will be presented to the transplant team.  They have these round tables every Thursday.  If they all agree I'm a good candidate, I will be approved to be added to the cadaver donation waiting list.  Once that happens, anyone who wants to get tested to see if they're a match for me can start getting their blood work and any necessary medical tests done.

Speaking of living donors, one thing I haven't addressed yet is the fact that if someone who has donated a kidney ever has an issue with their remaining kidney, they go immediately to the top of the transplant list.

Thank you

I was overwhelmed by the response to my sharing of this blog.   Thank you again to everyone who took the time to read it, reach out, and to share.  Please continue to share and ask your friends to do the same.  A lot of people have found donors (even anonymous!) through sharing on social media.  Getting a transplant before having to go on dialysis would be a HUGE advantage.

In between my last two doctors visits, my GFR decreased from 14 to 11, so time is of the essence.

And I also want you all to know that I am still feeling just fine, so no need to worry about that.  But make no mistake, it won't last, and I need a kidney sooner than later.

Wishing you health, peace and joy!

Love, Lisa

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I'm Not Crying, You're Crying

If only you knew how long I sat on that first blog post, wondering if I should share it, dealing with all the "what ifs" that might come of it.  I've always been a "worst case scenario" type of gal, and I've definitely gotten better with age, but it was a big deal for me to click "publish."  But within minutes, and until well past midnight, messages of love and support blew up my phone and facebook.  And as I alluded to in that first post, some were not surprising, but others were.  It's not that I think that people aren't good or that my friends don't care about me, but we all have busy lives, a lot going on (including me), and I know that it's easier to scroll on by than to stop and read, much less reach out.  Thank you, from the bottom of my heart.

I want to confess something. You know on facebook, how it tells you when it's someone's birthday and even makes it super easy to post on that person's wall?  I NEVER WISH THEM A HAPPY BIRTHDAY.  It's not that I don't love my friends or care about birthdays, but it just always felt so false to me to wish someone a happy birthday because facebook was prompting me to.  I don't know if that makes sense to anyone else, but now, as I sit here this morning, I realize that this is just one example of the many ways I withhold too much from the people in my life. What a stupid way to live!  I don't want to make any grand pronouncements, and I still won't be sending cards (ugh, they're such a rip off!), but you can expect to see me post on your wall for your birthday from now on.  I bet you can't wait, lol.

How to help, part 2

Ok, so apparently what people really want to know what to do if they want to get tested, what my blood type is, etc., etc...  I didn't know you guys were gonna get on it so quickly, sheesh!

First, I don't know what a perfect match for me looks like yet, since I just had my appointment at Cedars for all of that testing.  I do however, know that Cedars does incompatible matches, and if someone wanted to donate to me, having a different blood type would not necessarily be an excluding factor.  And, as I mentioned last night, there is also the possibility of paired donation.

My understanding is that a living donor may start the interview process now, but their clinical work up will not begin until I am officially on the transplant list.  This means phone call interviews for initial screening, but no labs yet.  If this is something you are interested in checking out, here are the people you call:

If YOUR last name starts with A-K, you call Jessica Luga 310.423.8463
If YOUR last name starts with L-Z, you call Miguel Can 310.423.4718

When calling, just tell them that you want to see if you can be a donor for me, and they'll give you whatever information you need, and ask whatever it is they ask (i'm so helpful, lol).

Because of HIPPA laws, I am totally excluded from the process.  I will not know who calls unless they decide to tell me personally.  This way, if you were to call and decide against becoming a donor, I'd never know.

As far as what else I know about being a living donor, I do know that usually it's the recipients insurance that covers the associated costs, that there is additional financial assistance given to donors who are over 100 miles from the transplant center, and that I am less likely to be a bitch to you if you donate a kidney to me.

I also found this information in my paperwork:

You can also visit the United Network for Organ Sharing (UNOS) website here: www.unos.org for more information about living donation.

Thank you for taking the time to read, taking the time to reach out to me, and taking the time to share.  

Love,

Lisa

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Welcome to My Blog

You've got to be kidneying me.

Get it??  LOL

YUP, I have Stage 4 kidney disease!

I wanted to come up with a just-as-funny but easier-to-spell name for this blog, but I've already spent months procrastinating, so I finally decided just to go with it. So welcome to my kidney blog. 

Why a blog?  Because it seems like more fun than mass emails and individual conversations about what's going on with me.  And because having something on the "Caring Bridge" seems depressing.  Oh yeah, and because if you want to help me find a kidney, sharing this blog will be the easiest way. 

So let's start at the beginning... 

Discovery (and more procrastination)...

Way back in 2000, after one of many urine tests administered by my OB/GYN during my first pregnancy, my doctor told me that I had blood and protein in my urine (microscopic, nothing you could see with the naked eye).  She said it could be pregnancy related, but that she wanted me to get my kidneys checked out after I gave birth.  

Although I don't remember consciously making the decision not to, I never went to get checked. I was, after all, young, feeling great, and I was a new (single) mom.  Remember those days??  It seems like just yesterday I was holding that boy in my arms, and now he's in college!  

Fast forward 5 years…now happily married to Seth and pregnant with Spencer, Dr. Lynch found blood and protein in my urine again.  This time, I went to a nephrologist after Spencer was born.The first nephrologist I went to was in an old crappy building in Torrance, and he seemed super old-fashioned.  He immediately wanted to do a biopsy.  Not wanting to have an invasive procedure unless I really had to, I sought a second opinion.  

Dr. Tsang is less than 10 years older than me, but I immediately felt at ease with him.  He took his time with me, and answered all of my questions thoughtfully and fully.  A biopsy would give a name to my disease, he said, but ultimately, it would not affect my treatment, as (at that time) my kidneys were functioning just fine.  I had found my kidney doctor.

Because it has been shown to slow the progression of kidney disease, Dr. Tsang did put me on a blood pressure-lowering pill even though my BP was not high.  The lower your BP, the less your kidneys have to work.  Other than that, I just did blood work and collected 24 hours of pee every six months.  And for years, my numbers held steady.  It became a bit of a joke with the Dr., who really wanted to know what I had and why I had zero symptoms.  “Are you sure you don’t want to have a biopsy??” he would ask.  Nope, I said, not until I have to.

We have no idea why my kidneys are damaged, and we will never know.  I don’t have any family history, I don’t have diabetes or any other physical conditions, nothing.  Just luck I guess.  And I've never had symptoms, either, except for abnormal blood work results, so that just added to the mystery.

When Obamacare rolled around and I decided to quit my corporate job, I ended up losing my PPO insurance,  and I didn’t see my nephrologist for three years.  I didn’t worry too much about it, though, because my numbers had always been steady and I was still symptom free. Then, about a year ago, it was time to update my life insurance policy.  State Farm sent a nurse to the house to draw my blood, take my BP, etc.  A few weeks later, I got a letter of denial based on my blood work results.  Specifically, my kidney function was extremely low.  Shit.  Not wanting to look for a new nephrologist, I paid out of pocket to go see Dr Tsang.  I had a history with him, and I trusted him.  Luckily, not long after, we were able to get PPO insurance through Seth’s employer.

It's Time

It's time to get a biopsy, he said.  I had had a larger decline in my kidney function in those 3 years than in the previous nine put together.

To make matters more exciting during this time, I was also having unexplained vaginal bleeding (sorry, guys) and I had an abnormal mammogram.  After literally a whole life of being able to eat like crap and not exercise (and still remain seemingly healthy), I suddenly felt like my luck was running out. Thank goodness for Seth, family, friends, and good health insurance!

Luckily, the bleeding was resolved by a simple in-office procedure, the follow up mammogram was clear, and the biopsy turned out to be physically easy–peasy. It wasn't until the biopsy was over that I realized how emotionally stressed I had been during all of it.

During a biopsy, there is actually a pathologist in the room who looks at the tissue sample(s) they retrieve on the spot to make sure that they get a sufficient sample for testing/diagnosis.  They ended up taking 2 or 3 samples from me. 

Prior to the biopsy, my doctor was treating me as though I had what’s called IgA Nephropathy, a condition in which the glomeruli cells of your kidneys are damaged.  If microscopic examination of these cells showed scar tissue, it would confirm his diagnosis. Unfortunately, and much to my dismay, they somehow got samples of all the different cells of my kidney EXCEPT the glomeruli!!  My doctor was not pleased.  But, he said, based on the other findings, my history, etc., he was inclined to stick with the IgA nephropathy diagnosis, and was not inclined to subject me to another biopsy. 

Post-Biopsy & The Future

Since the biopsy, I’ve been on a very short leash, doing blood work and seeing my doctor every 2-4 weeks.  Unfortunately, after a small period of holding steady,  blood work continues to show further decline in my kidney function.

To give you an idea of what kind of decline I'm referring to, a normal GFR (kidney function indicator) is 60 or better.  In the 3 years I didn't see my nephrologist, my GFR went from 51 to 32.  In the year after that, from the beginning of 2017 to the beginning of 2018, my GFR dropped to 20.

At one of my regular appointments, my doctor caught me off guard by telling me that it was time to start discussing dialysis and kidney transplant.  (I didn't know at the time that a GFR of 20 or less qualifies you to get on the transplant waiting list.) He went over the different types of dialysis, and gave me a referral to the transplant center at Cedar Sinai to start the process of all of the testing that will be required prior to being considered for a transplant, from either a living donor or a cadaver donor. The process of getting on the list can take awhile, so he thought it wise to get started ASAP. Despite knowing this was an eventuality, knowing it was coming didn’t seem to make me any more prepared.
Here we go, I thought.

Although there is no way to know for sure, Dr Tsang’s guestimate is that I’ll need dialysis in 18-24 months.  The in-home dialysis that he recommends for me requires a port and drain in my tummy (sexy!) and doing the dialysis myself FOUR TIMES A DAY.  Fuck!  What I didn’t know, however, is that it's possible to get a kidney transplant before I ever need dialysis.  This option just never even dawned on me.  Of course, it would most likely have to come from a living donor—probably a “bring your own kidney” situation—because the cadaver list wait is long.

(If you’re wondering how long the cadaver waiting list is, the answer is that it depends.  “O” blood types wait the longest, about 12 years in CA.  I am not “O”, but I’m not sure what I am, and what other factors will go into deciding where I would fall on the list.  So right now it’s just wait and see.)

The ideal situation is to have a family member who is a match and who is willing to give up one of their kidneys.  But if you have someone who is willing to donate but who is not a match, you can get into what is called a “paired donation” situation.  While it can involve many people (a chain), the most simple example is this:  Say Seth is a donor candidate, but not a match for me.  Then, somewhere else in the country, there is a person who is a match for me, but not a match for their spouse/friend—but Seth IS a match for their spouse/friend—Seth would give his kidney to that person in need, and their friend/family member who is a match for me would give me theirs.  Like a trade.The third option is getting on the cadaver list.

How you can help...

It’s an interesting position to be in, knowing that a friend/family member might be a match but doesn’t want to donate, or that they want to donate but can’t for some reason.  But one thing I learned when I was doing a lot of fundraising for my breast cancer walks is that sometimes the people you expect to help don’t, and that others surprise you with their willingness to help--both friends/family and strangers alike.  I also realized that we are all on our own journey, and that I could never judge someone for the decisions they made when it came to their money.  That goes double for their body parts!

While I will never ask anyone to be tested to see if they are a match for me (but I will let you, if you really wanna!), what I will do is ask that all of my friends and family share my story by sharing this blog.  There are A LOT of people in my situation, and you never know, I may be able to find a donor just from you sharing. You may unknowingly know someone with a family member or friend in need of a kidney, just like me. So please, share my story, it’s all I ask.  You could literally change my life by doing so!  And if you think it will help get more attention, feel free to attach a cat meme when posting to social media!

Love, Lisa

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