Sunday, May 23, 2021

A Life-changing Diagnosis

 Last winter, I went to the doctor for a regular check-up. I ended up in the emergency room that same day. 

When the nurse took my blood pressure, she said it was too high. The doctor took it again to make sure, and she said it was dangerously high. She said that I had to go the ER right away or I might have a stroke. 

I ended up staying in the emergency room for more than ten hours. At first, they put me on a gurney and hooked me up to an IV and an EKG. They gave me blood pressure medication and took my blood pressure every fifteen minutes because they were trying to get it back down. The blood pressure cuff hurt because it kept squeezing my arm. The gurney was left in the hallway so I had to just sit there while nurses and doctors bustled about. 

After a couple hours, they finally put me into a room where several other patients were, but our beds were separated by curtains. I heard an old lady across the room who kept complaining about her bowel movements, and she literally kept yelling, "POOP! POOP! POOP!" over and over again. One of the nurses' cell phones had the Batman theme song as its ringtone, and it kept going off again and again, to the point that if I wasn't still hooked up to the IV and EKG I would have jumped out of bed and thrown the cell phone down the hall, shrieking, "MAKE IT STOP! MAKE IT STOP!"

I was scared. I didn't know what was happening. It made me think of the time I ended up in the emergency room six years ago, when I was diagnosed with a neurological disorder and I almost went blind. I have recovered from that, but I suffered from permanent hearing loss in my right ear as a result. I can hear a little bit out of that ear, but I mainly rely on my left one now. I can't watch TV without subtitles (why does everyone on TV sound like they're WHISPERING these days?), and I often ask my students to repeat themselves when I'm teaching. 

The doctor and nurses couldn't tell me what was wrong with me, but they told me to go to another doctor the next day. After more than ten hours, one of the nurses told me, "OK! You can go home now!" 

I stood up, but I felt really dizzy and disoriented after lying down that whole time. The nurse looked concerned and asked me, "Are you OK?" 

"Oh, I'm fine. I'm fiiinnne," I mumbled, before I literally passed out on top of her. It was like that scene in the movie Elf, where Will Ferrell fainted on top of a shrieking elf. 

Then the nurse helped me up and said, "Uh, I'm going to put you back in bed for a while." She gave me some graham crackers and apple juice because I hadn't eaten since breakfast. After another hour, I finally got to go home, and fortunately, I didn't faint on top of any other nurses.

Since then, I have been back to the hospital fifteen times. I've had an echocardiogram, a renal artery duplex, and a kidney ultrasound. I have to go back to the hospital several times this summer. I am currently being treated by a team of doctors at the local hospital in College Town, including a cardiologist, a nephrologist, and a primary care provider. 

It turns out that I have polycystic kidney disease, which I inherited from my mother. She had a kidney transplant when she was in her late forties. My nephrologist said that I will most likely need a kidney transplant by the time I'm in my late forties or early fifties (I'm 40 now). But the wait list for a kidney is at least 5-7 years, sometimes more. My kidney function is already low, but when it gets dangerously low, I will have to be on dialysis for years while I wait for a kidney. If I don't get one, I could die before I turn sixty.

I also have to stay on medication for the rest of my life. I am currently taking two different medications to control my blood pressure, and I have to monitor it by taking my blood pressure with a digital monitor twice a day (which is why my arm is perpetually sore now). One of the medications made me cough incessantly, to the point that I kept having to buy cough drops. I couldn't drink cough syrup because it didn't work well with my blood pressure medication. 

The doctor finally took me off the one that made me cough and prescribed a different one, which fortunately does not make me cough. The medication I'm taking causes birth defects, meaning if I get pregnant, my baby will be born with birth defects or it will be born dead. So, I will never be a mother. I don't have the money to hire a surrogate, and no adoption agency is going to give a kid to someone who may die before the age of sixty without a new kidney. I wasn't planning to become a mother, but I sometimes think about what it would be like to have a child. It makes me sad when I see parents leading their small children by the hand because I know that that is a path in life that has now been closed off to me forever. 

The nephrologist recommended Jynarque (have any of you ever heard of this, and if so, do you know anyone who's taken it?) to protect my kidneys. But it can cause liver damage, so I'm like, NO!

I lost my temper with my doctors and nurses because they kept insisting that I come back to the hospital for more treatment or yet another medical procedure. I couldn't afford to take time off from work because of the mounting medical bills (which I had to use my stimulus checks to pay), so I had to stay up late every night to get my work done. The doctor even prescribed me a new blood pressure medication that cost more than sixty dollars for a 30-day prescription, which I couldn't afford, and he only backed down after I proved to him that it kept making my blood pressure shoot way up after several weeks of taking it. I hate my nephrologist because he's been a jerk about this whole thing, but there are only two other nephrologists in College Town, so I don't have a lot of options.

I made the mistake of telling my father about this, and he has not been helpful at all. The other day we got into an argument over the phone because he told me not once but six times not to get so worked up about my health. Then he called back and told me six more times. I should have known better than to think that he would be there for me.

I still haven't told my mother. She screamed at me over the phone and blamed me for my health problems when I ended up in the emergency room six years ago (so did my father), and she always makes everything about herself. She will call to cry, rant and rave every day if I tell her. So, despite pressure from my father, I've refused to tell her unless I get worse.

I just feel really angry, sad, and scared. I've tried to be a good person my entire life, and yet I feel like I'm being punished somehow. Other people like the Model and his girlfriend literally scammed the entire country (which is another post in itself, and I will write about that later), and they not only got away with it but got everything they want. But I never did anything like that, and I'm the one who ended up in the hospital. It's scary because now I know how I will die. I will most likely die of kidney failure. Even if I get a transplant, the new kidney won't last forever. I will most likely not live a long life because of this disease.

I confided in one of my friends about my fear of not living a long life, and they said, "Well, if this is God's plan, you just have to live out the time that you have left." That did not make me feel better; it made me angry. I haven't been very religious in a long time, and I don't want to believe that God's plan is for me to have a short life. 

I don't want someone else's kidney. I don't want to have surgery. I don't want to go on dialysis. I don't want to keep going back to the hospital again and again for the rest of my life. I don't want to die. But none of that is up to me. All I can do now, according to my doctors, is maintain my health so that I can hopefully put off the transplant. I've been exercising 5-6 times a week, and I rarely drink soda anymore. If I buy coffee I get decaf. I rarely eat fast food, except for the sandwiches at Starbucks because they're a lot healthier than burgers at Wendy's or McDonald's. I've lost ten pounds, and my blood pressure has gone down. So I still have hope. Maybe I'll be one of the select few who doesn't have to get a kidney transplant. 

Sorry about the depressing post. This whole situation is partly why I haven't blogged in a long time. 

But this whole situation has made me have a different outlook on life, and it's made me more determined to make some changes. I'm going to write about those too, so stay tuned. 


  1. I'm so very sorry you're going through this, and especially that you're doing it without the support of your parents.

    But, oh I hope you can see how positive your final paragraph is. The big things make us take stock, and I look forward to hearing more about it.

    1. Hi Annalisa,
      Thank you. It's been difficult to stay positive. Every time I get a message from one of my doctors I feel another wave of anxiety. And it's scary because I won't get better; I'll only get worse. But it has made me think about things in my life that I am capable of changing, and hopefully by doing that it will make me feel even a little better.

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  3. I'm sorry you are dealing with this. I know it's tough. My brother had a liver transplant and kidney dialysis. Sounds like you are doing all the right things. Hope you get this turned around.

    1. Hi Sandra,
      Thank you. I hope that your brother is okay now. I worry about dialysis partly because of how much time it will take away from my work; I can't afford to take too much time off. Hopefully I won't need it, but I don't know what will happen; I wish that I could see into the future and know what it will be like. But don't we all?

  4. Wait, your mother went through this and despite that, your father is unsympathetic? That hurts.
    I've been through PKD, dialysis, and a transplant with a close family member (always bless my sister-in-law who volunteered as a donor!).
    Jynarque must be new. I wonder how effective it is. To be blunt, I wouldn't worry about liver damage because the liver regenerates and the kidneys don't! Also, if there's anything at all that can slow the path towards dialysis, I would take it, because once dialysis starts, the only way off is through a transplant. Do the doctors already have you on a donor list? The earlier the better, I'd think.
    UCSF is working on an implantable kidney!
    It seems to take forever, but I really think they're showing progress.
    There are some other treatments that may or may not be in clinical trials, involving stem cells. There used to be one that involved a combination kidney and stem cell transplant but it's harder on the donor, that one.
    I hope the medications help your blood pressure even out soon!

    1. Hi Deniz,
      I've made it clear to my father that I am no longer willing to discuss my health with him; I regret telling him in the first place because he just made me feel worse every time I talked about it. He's very selfish, just like my mother.
      Thank you for your advice about treatment. So are you saying that you have this disease too or that your family member went through it? If you went through it, what was your kidney function percentage when they decided to put you on the transplant list? How long did you have to be on dialysis? I'm worried about Jynarque because I read that there were some severe side effects, but if it's the only thing that can help me, I'm going to have to take it.
      My blood pressure has gotten better since I was in the ER. It was dangerously high last winter, but I've managed to get it under control, largely due to the medication but also due to lifestyle and diet changes. But it's stressful to know that I need the medication in order to survive.
      Thank you though, for your support. I appreciate it.

    2. can't remember what the creatinine levels were near the end (it was about three years from first diagnosis to starting dialysis and the numbers just got worse at every checkup. We tried other things in between (while keeping up the doctor-prescribed medication), mostly related to diet and so on, and while they helped with blood pressure, they really had no effect on kidney function) but now, post-transplant, if I'm remembering the last round of testing correctly, it was about 98. Then we were on dialysis for nearly a year before the transplant (sorry, I'm saying "we" to keep details off a public site. Also, if this message sounds choppy, I'm sorry! I wrote a longer one and blogger ate it!)

    3. Hi Deniz,
      I'm getting my creatinine levels tested tomorrow, I think, because I'm getting more lab work done tomorrow. I'm nervous about it, as well as the two doctors' appointments I have later this week. I hope that the results will be good. But thank you for all of this information and advice. I appreciate it! Most of this is unfamiliar territory for me. I almost wish I had a medical background so that I could understand what is happening to me. I'm worried about the dialysis. The nephrologist said the wait list for a kidney was 5-7 years, and I hope that I won't have to be on dialysis for that long.

    4. {{hugs}} Always here if you need to chat!

    5. Hi Deniz,
      Thank you so much! That means a lot and I appreciate that!