Tuesday, August 9, 2016

Holy Shit- I'm about to go on the transplant list.

I've been waiting 30 years for this. So even though it's a little scary – the thought of some random doctor cutting into me, moving my big ugly cyst-filled kidney aside and connecting a family, friend or total stranger's pretty pink kidney into me – I am happy. I've been feeling the pain of this kidney disease and these cysts growing and bursting inside of me for about 15 years. I'm ready to feel good.

There is is so much information out there about Polycystic Kidney Disease (PKD). I know how and what the kidney does and how it works. I know which numbers on my lab work to look at so that I know where my kidney function is at. So when I got the word that my kidney function (EFR – estimated filtration rate) was within the range of 15-30 I knew that meant my kidney function was severely reduced (under 15 is failure). My lowest level was 18 and I was also at 20 twice, which is the prerequisite for being referred to a transplant team.

Now look, I'm not here to give you a lesson on PKD. Like I said, there's a lot of info out there if you are interested in looking it up. This blog is a place for you to learn about me – what it's like to freak out, wait, go through the transplant process, and basically what I'm feeling, both mentally and physically, the entire time. So I'm sure this will cover pretty much every emotion I'm feeling, but I usually share that shit on Facebook anyway.

To be honest, I freaked out a little at first. I'd been feeling really tired. I can usually sleep all day on a Sunday. Not kidding at all. My kidneys started feeling different recently...different than my normal cyst pain. It's like a dull headache in your lower back, all the time. So I started Googling failing kidneys, end of life for polycystic kidneys, etc. and I could find nothing the explained how you're supposed to feel. What the fuck?

I went to online groups of other people with PKD, or people who've received transplants, people on dialysis. And not to sound like a big bitch, but most groups sites were total bummer pity parties. There are a shit-ton of  people with kidney disease just hoping and waiting for a donor (the average wait time for a kidney from a deceased donor 8-10 years – pretty depressing). So if you haven't already signed up to be an organ donor, DO IT...people need your shit as soon as you're done with it.

I digress...sorry. Anyway, what I needed was a step-by-step 'if you feel this' site. Like, 'call the doctor if you feel like your kidney is going to explode'. If you feel this, don't call the doctor because you just have gas. I did talk to my nephrologist (kidney doctor) about all these different feelings along with the pain I'm used to having. He said it was was most likely kidney growth.

But what about:

  • No appetite.
  • Peeing is more like tinkling. Or sometimes it's as if I drank 3 beers and finally made it through the bathroom line and pee with such relief that I actually say "ahhhhh" as I start.
  • And why does my pee smell?
  • I itch all over, like the inside of my skin, My eyeballs even itch – it's maddening.
  • I'm so tired but sometimes I wake up every hour.
  • Are these things normal? When do I go to the doctor?


I need a 'What to expect when your expecting your kidneys to fail' site, and one that's positive and assures me that I'm going to feel so much better once this happens (cuz I sure feel shitty now).

So I'm going to figure all these things out and share all the funny (sometimes gross) true feelings of what my body goes through during this rejection process until get my new pretty kidney. I don't want pity. This is a good positive thing – it's just happening to a totally neurotic me.

Are ya with me? Feel free to ask me any questions and I will answer the best I can.

(I also swear a lot. It's what I do...so get the fuck over it.)

 https://pkdcure.org
 http://www.mayoclinic.org/diseases-conditions/polycystic-kidney-disease/basics/definition/con-20028831

17 comments:

  1. I love you Kelly, and like what you wrote. Well done, my friend.

    ReplyDelete
  2. I think you write really well and I respect and like people that talk about challenges and fears in life, but you already knew I respect and like you. Looking forward to staying informed during this crazy journey. Good luck, buddy. Love you.

    ReplyDelete
  3. I'm happy you've finally got some answers. I would love to talk to you about this as I've been some different symptoms and they don't do anything to give me answers. It's always it's probably Fibro. Hope all goes well for you. You're in my thoughts❤️ AQ

    ReplyDelete
  4. Your outlook is rad! I wish you all the best. Online shit is the worst and it can freak you out so much.

    If y'all want a casserole while you are out of commission, I can drop one by Lex's work. One less thing to worry about.

    Keep us posted!

    Jill

    ReplyDelete
  5. I am so happy that you will be healed. I pray that your body accepts and that the transition into a healthy new body meets your healthy mindset. Bless you lovely friend.

    ReplyDelete
  6. It sounds like a very hard thing to go through. If you want to talk to someone who had a kidney transplant, I have a friend who got a kidney from his brother. He's a super nice and very funny guy. It was am amazing transition in his health and even his hair after he had his new kidney. Let me know if you want to talk to him. Take care Kelly. Jackie Maurer

    ReplyDelete
  7. Awesome. May the force be with you. Donor soon!

    ReplyDelete
  8. I had no idea you had kidney disease Kelly. Thst sux big time, I pray that you will find a donor

    ReplyDelete
  9. My kidneys have been weak for as long as I can remember. I am 53 now and I am not sure what is kidney and what is menopause. I ended up in April with a sinus infection with fever that turned into kidney shut down within two days - I had no idea that my kidneys were even an issue because the classic symptoms were not there. I am curious to see what information you dig up about symptoms. In the meantime, you and your family are in my prayers. It's a much better time to get a transplant than 15 years ago. Your attitude is awesome and I know you are surrounded with love and support. Thanks so much for sharing

    ReplyDelete
  10. This comment has been removed by the author.

    ReplyDelete
  11. Love you TONS MS. Pinky & am here to support you anyway I can!! #GOMO4KELLY

    ReplyDelete
  12. PART ONE My journey started at age 19 [ I am now 66] when a full physical revealed kidney dysfunction caused by acute nephritis, { same as Jona Lomu had]. The prognosis was I would be on dialysis by the time I was 40. My medication prescribed at that time was just for blood pressure. So here I was age 19 with high blood pressure and the prospect of needing a kidney in 20 odd years. Hmmmm, not quite what I had planned for my life, just married and in business as a commercial cleaner, hoping to make my fortune and get off the bottom of the heap even though I only had 2 years secondary education.
    Whilst in hospital for a few days getting a biopsy I observed the people on dialysis and commented to my wife at that time how there was no way I wanted to be holding down a job and being on dialysis. The time off work, if indeed I could do any physical work would be pretty hard to maintain. So I decided to make my goal to be able to live without wages at least by age 40, if not retire. Well I could have retired at 40 [ just, with sickness benefit or whatever as support] as the house was freehold and I had all my furniture, car etc . I worked long hours, up to 90 a week and was pretty frugal.Time went on and I felt fine except I felt like shit most mornings, like a hang over. I must confess I had a few of those too! My EFR readings were not much worse at 40 years of age than what they were at 19 so I was pretty excited.Maybe they were wrong but even today they say they would give the same prognosis now.

    ReplyDelete
  13. PART 2 I stopped working such long hours by selling my commercial cleaning business and getting into a new business that required about 5 months work flat out but only 50 hours a week and carried on with life, gradually ticking off a few things on my bucket list. My health started deteriorating, I had a lot of the symptoms you had, itchy all over sometimes but worse was the irritable muscle syndrome in my legs, I just could not get to sleep with it. Also nausea, especially in the morning, I called it my morning sickness. Joint pain from osteoarthritis became a problem and still is even though I take 8 Paracetamol and 2 slow release Tramadol a day. My pee smelt yuk to and bladder control was problematic. At age 52 I sold my business and retired so that I could focus on my health more and enjoy life .I had all year where I could take off for a while and I thought , what the heck. My life is going to change so lets get some travel under my belt before I need to go on dialysis. I was now on quite a few different medications but as long as I took them all at the right times, drunk plenty of water, at least 2 litres a day, avoided booze [ well cut down!] and ate pretty healthy I found I kept a lot better. I really like to party but boy I paid for a night out for about 4 days. By age 60 my EFR was down to 19 and falling fast. They told me they had put me on the transplant list in Wellington and I went onto Peritoneal dialysis which I would highly recommend as you have more freedom to travel and the time you are tied down to dialysis is in easier bytes. Whilst on dialysis I traveled to Singapore for 2 weeks and to OZ for 5 weeks another time.The team at Renal Outpatients were fantastic all the way through from age 19 but I think I was their blue eyed boy actually as I did everything asked of me.

    ReplyDelete
  14. Part 3 We shifted to Tauranga in 2014 and I needed to deal with Waikato Renal Outpatients, a 2 hour drive away which was a bit of a pain. But once again, fantastic care, better in fact than Wellington. I was really pissed off to find out I wasn't even on the transplant list. I found out because the first thing they asked me was about blood tests and Serum tests. Yup I do blood tests every month, have been for 40 odd years. But no serum tests. WHAT??? If you don't have a serum test we can't find a match, it must be done by 17th of the month otherwise you are off the list for a month. So, I had thought I was on a transplant list for 18 months in Wellington and I wasn't. I had been in for a MRI to check on my heart and that was about it. Well Waikato had me go to the dentist to get a clean bill of health on dental care, a stool test and some other test in hospital for the day where they took your blood every 40 minutes or so.Also more checks on the heart. They set me up with new blood tests,and the serum tests and I thought wow, a new kidney seems imminent the way this is all going. I increased my exercise, cut out booze completely and bugger me days if not 3 months later I got a call from Auckland to say they had a kidney for me. I have been so lucky and I'm so grateful for the kidney, ongoing care over the years . I was down to 14 on my EPS but apart from all the above symptoms still able to function as a normal human being.
    I tell you all this because I want you to know that there is a light at the end of the tunnel. A kidney transplant will come to you in time. Meanwhile ask, are you doing all the blood tests to qualify your inclusion, have they tested the strength of your heart?. Do you have regular dental care, an infected tooth will stop you getting a kidney as the infection will most likely shift to your new kidney. Have you decided on what kind of dialysis you want, sometimes you may not be able to choose due to medical reasons. Are you looking after your diet, exercise, weight control and water intake?
    Stay positive, enjoy life but all in moderation and you will see out the time until they find a match for you. There is a lot of positive things that have come out of being told at 19 what was in store. It motivated me to take action to retire early and to help my kidney cope with the pressures of life.
    My kidney transplant was on 15th June 2014 and has functioned well from the start. There is lots of pills to take for the rest of your life to stop rejection which was not aware of but its worth it.
    Take care and good luck

    ReplyDelete