Yes, You Can Be Denied A Transplant If You’re Not Vaccinated (and that’s not new)

Living with a chronic condition during a pandemic is… interesting. In many ways, the stakes are higher and more risky. In others, it’s a chance to see how the general public would react if they were put in our shoes. I’ll be honest, lots of y’all couldn’t deal. There is no greater example of this than the internet outrage surrounding the stories about hospitals requiring the Covid vaccine for transplants.

6 years ago today I was laying in the hospital mostly unconscious after discovering the “flu” I had been experiencing for two weeks was actually kidney failure. You can read the extended cut of that story here. To summarize, I went into kidney failure at 27, was on dialysis for about 18ish months, and got a transplant in the summer of 2017. To say I understand the nuances of the organ transplant process is to put it mildly. So, when this transplant/vaccine story started making the rounds, it understandably pushed some of my buttons.

In case you missed it (since it wasn’t the only kidney transplant story taking social media by storm), hospitals are now requiring organ recipients to receive the Covid-19 vaccine before approving them for transplant. This was accompanied by a viral social media post from a Colorado State Legislator of a letter someone received telling them they were being deactivated on the list for not having the vaccine.

I have some thoughts, preceded by a long, loud string of expletives.

First: Get the vaccine. Get the vaccine if you’re a “healthy” individual, but especially get the vaccine if you have kidney issues. Covid has a habit of attacking the kidneys and sending people, even “healthy” ones, into kidney failure. I can say from experience that I do not recommend. If you’re unsure or hesitant, go to YOUR doctor who has YOUR medical records and talk to them about your concerns. If you trust them enough to care for you when you’re sick you can trust them enough on vaccine information.

If you can’t afford to see a doctor, go get the vaccine. It’s free and a hell of a lot cheaper than the quarter to half million dollars two years of dialysis and a transplant costs.

If you’re getting your medical advice from randos on the internet… well I’m a rando on the internet and I say to get vaccinated. Not only do I have science on my side, I also have a very cute cat which means I am probably right.

One very cute cat. Photo by Matthew Trask

Second: I want to explain what this letter is and what it actually means, because this sort of letter is not rare among transplant patients and the Covid vaccine is the easiest thing on the list to fix.

When you need an organ transplant of any kind, you are registered with United Network for Organ Sharing (UNOS) to be put on the transplant list. To quote directly from their website:

[UNOS’s] policies and computerized network match donated organs with transplant candidates in ways that save as many lives as possible and provide transplant recipients with the best possible chance of long-term survival.

What this means is that there is a number of criteria that need to be met to receive an organ. For things like hearts and lungs, the threshold is lower because there is no way to survive without functioning hearts and lungs. With kidneys though, we have dialysis which can keep you alive for a number of years with no kidney function. This means the criteria to get a transplanted kidney is stricter. Some of these criteria include things you have no control over; age, reason for kidney failure, blood type, etc. Other things you might have control over, like weight/BMI or lifestyle habits like smoking. If you’re over a certain weight or you smoke, you gotta change that before you get listed.

You can also be denied listing if you don’t have an acceptable financial or social support system, which if there was a point in the process to get heated about inequity this would be it.

You also have to go get every single check up from every single specialist. For me, this meant the dentist, OBGYN, endocrinologist, and a bunch of cardio appointments. I also had to get boosters of every single vaccine I have ever known… from flu to hepatitis to shingles and more. You don’t get to decide to not get something done if you don’t want it… if your doctor thinks it’s an issue that can’t wait, then that’s what has to be done before you’re listed.

Which brings me to the crux of the previously shared letter: Medical Compliance.

All of the medical workups before your transplant are for two reasons:

  1. To make sure you’re healthy enough to have a successful transplant
  2. To make sure you’re in a position to maintain the success of your transplant

Getting a new organ isn’t like popping a new printer cartridge in and continuing on as before. It doesn’t magically resolve once the staples are pulled and the stitches heal. There’s maintenance involved. Doctors appointments. Medications. A compromised immune system. Buying Lysol wipes in bulk regardless of the pandemic status.

The cold hard truth is there aren’t enough organs for everyone – they’re gonna give it to the person who is the most likely to have a long successful life with that organ. If you’re not going to take a prescribed vaccine, how do they know you’re going to take your medication or show up to your appointments for the rest of your life? If you are not going to follow your doctor’s guidelines on your health, they are not going to give you the organ. In the case of kidneys, you can remain on dialysis as an alternative.

Another important thing to note is that this individual didn’t get “removed” from the list, they were deactivated. That means they’re still on the list, but greyed out so to speak. Should they get their required vaccinations, they would resume their place in the spot they would have been if they had been active all along. This is also not unusual. Sometimes something happens, like some wonky blood work or a suspicious mass on a CAT scan, and they deactivate you to make sure that there isn’t something else going on. Once you’re cleared, you’re back in your spot.

All of this to say that this is really a nothingburger of an issue to get worked up over. You’re trusting your doctor to either perform Frankenstein-like procedures on your body or to keep you alive with machines that filter your blood and literally drain your life force; but a vaccine is too far? That’s your prerogative but every choice has consequences that are attached. Choose wisely.

Let’s Talk about the KUPA

Not this kind of Koopa

I have talked in the past about how I struggle with body image post transplant and how there are certain “things” that you wish had been discussed, or at least mentioned, so that you didn’t feel so alone in dealing with them. Well friends, there is a hot new topic with a catchy name that gives a word to the biggest thorn in my vanity side; The K.U.P.A. and we have Sarah Hyland to thank.

Sarah Hyland is a lovely and talented actress who you may recognize from Modern Family. At 28-years-old, she has had a public journey in dealing with her health situations including not just one… but TWO kidney transplants. I tip my non-existent hat to her for being as open as she is about her health in the public eye.

Earlier this week, she shared a photo of her performing with Dr. Phil’s son at the Teen Choice Awards where she noticeably didn’t wear spanx.

Quick anatomy lesson:

Your kidneys are located in your lower back sides, tucked up under your rib-cage for protection.

Photo Credit: EMedical Updates

When you get a kidney transplant, they don’t take out the non-functioning ones (unless they are cancerous, infected, or just too big due to PKD). They stick the new ones on your front side nestled in your pelvic bone for protection.

Photo Credit: Mayo Clinic

If you are a possession of a uterus, you are squishing that up along with your intestines to create a nice little POOCH that extends and makes you look vaguely pregnant at all times; more so if you spend an evening at your favorite Ramen place.

Back to the Commentary:

Let’s talk about the KUPA, or the Kidney Upper Pussy Area, and how delightful it is to see a young woman with two bonus organs shoved in her abdomen embrace the fact that her stomach isn’t flat. This is the most realistic post transplant content I’ve seen in a while. The KUPA is an unavoidable consequence of a transplant due to the placement of your new kidneys and the rest of the organs you already have leasing space. And there is no mention of it in all your pre-op appointments because:

A. The average age of a transplant patient is older and they (probably incorrectly) assume that old people don’t care about their vanity.
and
B. You’re gonna gain weight from the “Don’t Die” meds they put you on anyway, so they lump it in with that and just tell you you’re getting fat.

Related Post: Post Transplant Body Image Issues

Factoring in that I am not a Hollywood actress, I don’t have access to quite the same level of health care she does, and staying svelte isn’t an important part of my day job, I really relate to the metaphorical middle finger Sarah Hyland gave by letting her body act like… well.. a body. On more than one occasion I have gotten dressed up to look amazing only to look down at the extra lovely lady lump on my abdomen. It’s a buzzkill when the Kroger checkout clerk asks when you’re due when you have a cart full of White Claw and are very much not.

Kudos to you Sarah Hyland, for giving young kidney transplant recipients a hashtaggable phrase to reclaim ownership of our slightly lopsided bodies.

Don’t “Shake Up” my Kidney Care.

Sometimes life gets busy and your blog falls by the wayside; lots of things you want to do but no time to do it. See also: Me from the beginning of May until now.

And then sometimes you read an article that you need to respond to and it’s just too damn long for a Facebook post. See also: Me, reading this piece from Politico on the Trump Administration’s plans to “Shake Up” Kidney Care.

The gist of the story is that the Trump Administration wants to overhaul the “Kidney Care” system, namely Dialysis, and get people out of clinics and in to home treatment options. This, in theory, allows more people to make it to the transplant process and saves the government a buttload of money in paying for these treatments.

Given this administration’s lack of movement and empathy on ensuring health coverage for vulnerable Americans as it stands right now, I am very suspicious about the true motives behind this proposal.

Listening to and reading this make me think this is less about “innovation in care” and getting people out of the stand-alone clinics (Watch John Oliver’s show about Dialysis… the system is pretty fucked), and more about finding ways to trim the Medicare budget. Medicare pays for 100% of Dialysis (Thanks Nixon!). That’s roughly $114 Billion a year.

I’m a huge proponent for home dialysis options. Home treatments, like Home Hemodialysis and Peritoneal Dialysis, are cheaper than in-clinic options due to not having to pay for staffing. However, home treatments are no walk in the park. Home Hemo requires you to have a trained caregiver to help monitor your vitals as your blood goes wooshing through a machine and to make sure you don’t have a sudden blood pressure drop and die. PD, which is what I did, involves tubes in your stomach and bags of medical waste every night. It might be a bit presumptive of me, but I equate it to chemotherapy. It is an intense medical treatment that you are having to administer yourself, or via someone you find to help you, regardless of how bad you are feeling.

Related Post: My Kidney Failure Story

It’s hard. I was 27 and had no other health issues working against me and it was hard. A majority of people who go on Dialysis are older and have other chronic health issues that they are juggling on top of being tethered to a machine that serves as a major organ for upwards of 10 hours a day (Mine was overnight).

I’m concerned that pushing the care out of clinics and on to the patient will make it easier to cut that from Medicare coverage. For reference, just one night on my dialysis was $6,000. Just the treatment; not the meds, not the sanitation supplies, not the weekly/monthly clinics… Just the treatment. I had to do it every night for 18 months, and those costs add up quick. I would not have been able to stay alive without Medicare covering those costs.

This strikes me as a way to trim the Medicare budget at the expense of people’s lives. Which is bullshit because if you want to “shake up the Kidney Care”, there is an entire industry of for profit Dialysis Centers that are profiting off of keeping people in a state of near death. Those could stand to have some scrutiny and regulation to provide both better care and a lower cost of service. Again, I really recommend you watch the John Oliver episode. They did a great job.

The Hero We Deserve

Innovation and empowering patients to take control of their own care is a vital aspect to long-term success with any chronic condition. However, I don’t believe that you can single out one condition to “shake-up” without looking at the big picture of our health care system. This administration has been ignoring the health care needs of our most vulnerable citizens and rolling back legislation that provided PREVENTIVE care that would prevent or delay people needing Kidney Care treatments.

My health, wellbeing, and life is not a budget line item. My kidneys do not need to be shaken. Health Care isn’t a bargaining chip in your giant game of Risk. Don’t undo one of the two good things that Richard Nixon managed to do.

OTC and Me

Three points you need to know before I start this rant:

  1. I’m sick with a really bad cold
  2. I’m post Kidney Transplant
  3. When you’re post Kidney Transplant, you can’t take ANYTHING over the counter outside of Tylenol and Benadryl

Most of the time, I’m cool with that. Thankfully, knock on wood, I still seem to have a decent immune system in spite of the high dose of immunosuppressants I’m on. 

Until this fall, when I ended up in the hospital for possible Sepsis because of a fucking UTI. And now when I have the Head Cold straight from Satan himself. 

It’s been a goddamn week of snot the color of gak and coughing so hard my cat is afraid to sleep in the bed with me. Countless night waking up gagging and coughing. It’s spread to my eyes. My nose is swollen. I’m more of a mess than usual.

Unable to take mouth breathing another second, I cried “damn these med restrictions!”, ran to Target, and stocked up on the good stuff.

Now that I’m home, I’m afraid to take them.

This calls back to the whole “nobody prepares you for the Chronic part of your condition” and my general life long struggle of “what is normal”, but I didn’t realize how things like being able to go to the store and buy something for symptom relief can be taken for granted. 

Now, trust, I did my research on these active ingredients. I called my nurse. The likelihood of my kidneys exploding overnight is very slim. I’m lucky that I don’t have any additional diagnoses to contend with. That being said, it still really sucks to have to balance feeling better “now” with whatever damage the relief might cause in the future. We’re talking about trivial stuff like cough relief that should just be able to be dealt with.

For the record, I took the Nyquil. It was magical. I could breathe and sleep at the same time. No obvious organ explosions as of yet.

This cold and flu season, take a moment and be appreciative that you can just grab stuff from the pharmacy without any real concern to treat what ails you. And, you know… don’t cough in my face, ya nasty.

3 Years Post Kidney Failure

Last night was the 3 year anniversary of my kidney failure. If you haven’t heard the story, I wrote about it for World Kidney Day here.

A question I get asked a lot is “How are you doing?”. I hate that question. Nobody really wants more than a one word answer, and the truth is… it’s complicated. For the most part, I’m doing really well. Transplant is doing well. I’m moving forward in my life. I have a really cute cat.

But, here’s the thing with chronic conditions… nobody prepares you for the chronic part. It’s also really difficult for well meaning people to fully understand why certain things are they way they are for you.
These are some things that are now a regular part of my life that is really difficult to articulate in regular conversation.

Salt Sensitivity One of the first things I had to do when my kidneys went kaput was severely cut my sodium intake. After not eating salty things for a significant portion of time, my taste-buds forgot that flavor existed. Now, things go from bland to WAY TO SALTY with a few grains of added salt. Which really sucks, because food tastes better salted, it just makes my mouth feel like the Dead Sea.

Super High Pain ToleranceThis might be a TMI/WTF story and I kinda don’t care. Immediately post failure, I was put on hemodialysis with the full intention to move to peritoneal dialysis within 6 weeks. This means I had a chest port that went in to my heart for treatment until they stabilized my condition, were able to put a tube in my stomach, and let that heal up for use.

When I started using the stomach tube, I didn’t need the chest port anymore. So, they numbed me with a few shots of local anesthetic and PULLED THE FUCKER RIGHT OUT. They pulled a plastic tube out of my heart with just a numbing shot and then just slapped a band-aid on top.

Nothing hurts me anymore.

The Zero to Sixty Illness SituationThis has been my current life… if I get sick, I get fucking SICK. I have had 3 minor illnesses in the past 3 months and ended up hospitalized for two of them. It’s a very frustrating new fact of my life that even if I do all the right things, something like a sinus infection will turn in to a potentially serious situation in a matter of hours.  Which leads beautifully to my next point…

Unsolicited and Dangerous “Health” AdviceYour essential oils aren’t gonna do shit for me. I can not “cure” myself with a raw fruit diet or MLM supplements. That new juice blend you want me to drink has starfruit in it and that will kill my transplanted kidney. I guarantee that you don’t know as much about my condition as I do, and I’ll be a monkey’s uncle if you know as much as my transplant team does.

I’m looking at you random hometown acquaintance who keeps FB messaging me to buy your crap.

The “Fuck It” Personality TraitThis is kinda my favorite “new” change. I do not care about so much now. Or, maybe to put it better, I don’t have time to care about stupid shit anymore. It’s extremely freeing to know that I can just say “fuck it” and either do the things or not do the things. Alternatively, I also tend to say “fuck it” to the things that maybe I shouldn’t a lot more… 

There’s no real happy wrap-up in a neat package for this reflection… 3 years later and here we are.

How are you? Alive.  

My Kidney Failure Story

Today is Word Kidney Day. I’ve thought a lot about making this post and what exactly I want to say in it. Obviously this is a topic that is quite personal. Yesterday was my 9 month kidney transplant anniversary. 

Being that it is quite an emotional topic still, I want to say the following and leave you with a story. 

Be an organ donor. Please. Find out how here.

The rest of this post is another blog I wrote about a month after my kidneys failed. The photo is of me in the hospital. I’ve come a long way from that night.

SO, MY KIDNEYS STOPPED WORKING…

 Posted on November 8, 2015 by Kiwi

I swear, I thought I just had the flu.

I had been “flu-like” for about a week. Granted, I hadn’t been feeling “good” for about a month. And YES, I knew I had Kidney Disease going in to it… but I didn’t really show any of the symptoms of the dreaded Renal Failure they kept warning me about. My blood pressure was great. I wasn’t puffing up. My skin wasn’t turning yellow. Good lord, I have been dealing with vomiting issues my entire life… this was no different.

Except it was. I went to the walk-in clinic on a Friday. I got my anti-nausea medicine and went on my way. Saturday came… I wasn’t feeling better. In fact, I started feeling worse. By 8pm on Sunday night, I was laying on my bathroom floor, still unable to eat or drink anything. I could feel the dehydration setting in. Semi-begrudgingly, I stumbled out of my apartment and to my car to take myself to the ER where, I assumed, I would get an IV of saline and stronger flu meds.

Cue fate laughing at me.

I made it to the hospital fine, but I could feel myself getting worse. I started trembling and walking even a few feet was EXHAUSTING to say the least. Seriously, I had to stop and rest halfway between the parking lot and the ER door. Still, I was convinced it was just a bad case of flu.

Once inside the ER, I was subjected to the standard treatment. Paperwork, triage, waiting, xray, more waiting, finally getting a room, bloodwork, even more waiting. I had a hunky nurse, which made the waiting MUCH easier. They started monitoring my blood pressure, gave me some fluid and more anti nausea meds, and yet I still wasn’t really feeling better.

About three hours in to my ER adventure, a (very calm and sympathetic) doctor came in to my room. She started asking a bunch of questions.

“Have you lost a bunch of weigh recently?

Well… yeah, but it’s been a stressful few months with graduating from college and a stubborn job market. I haven’t been very hungry lately.

“Any skin complaints?”

Well… I guess… I have been itchy lately, but my skin has been really dry lately too.

“Have you been craving ‘non-food things’?”

Is ice a non food thing? I have loved chomping on ice nonstop for the past while.

“How has your energy level been?”

Low, I guess. I’ve been really tired. That’s pretty normal for me though.

She nodded, and very calmly said,

“Sweetie, you’re in kidney failure. Your creatinine (blood waste – normally removed by fully functioning, well behaved kidneys) is really high and your hemoglobin is really low. You need to get to the ICU and get a blood transfusion.”

Say what now? ICU? Blood Transfusion? This doesn’t sound like the flu. In fact, this is starting to sound pretty bad.

Sympathetic Doctor Lady and Hunky Male Nurse start assuring me I’m in good hands and they begin moving the equipment and IV bags around to better fit in another bag of liquid. I, meanwhile, proceed to have a panic attack. Sedatives are ordered to take the edge off.

As we’re waiting to get a spot in the ICU, it is explained to me that hemoglobin is essentially the thing in your red blood cells that carry oxygen. A normal level for someone my age is 12-15. I was at 2.9. Basically, my red blood cells were shredded shells of their former selves – just going through the motions and not really doing anything useful in my body.

“Who drove you here?” Sympathetic Doctor Lady inquired. “We can make sure they know what ICU room you end up in.”

“I.. uh… drove myself.”

“You’re kidding.” Her eyes widened. “You shouldn’t have been able to walk, let alone drive.”

Lucky me. Well, if I have to end up in renal failure, might as well have some fireworks, eh?

We finally got in to the ICU as the sedatives kicked in to gear. As I was drifting off to sleep, a team of nurses and technicians appeared at my bedside with more paperwork. It was more paperwork, this time to get me started on emergency dialysis. I could refuse… but then I would die. Easy choice. I signed the papers, surprised all of them by getting out of bed to use the restroom in a triumphant attempt to prove I didn’t need a catheter, demanded more sedatives before they stuck the tubes in my neck, and fell back asleep.

When I awoke a few hours later, I had two tubes coming out of the side of my neck. They were wrapped in gauze and looked like a giant Frankenstein bolt. How very Haloween-y. I had 3 bags of blood pumped back in to me (I think). My phone battery was dead. I no longer felt like vomiting every 5 mintues. And, I now faced life as a dialysis patient. Needless to say, it changed many future plans.

I spent 11 days in the hospital as we tried to work out all the medical and insurance stuff. I’m essentially OK now, at least as OK as one can be when on dialysis. Bumps in the road are to be expected, and I’ve had a few already. I’ve got a long road ahead, but it’s still better than the alternative.