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PKDSTGV
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« on: May 14, 2011, 11:13:58 AM »



Hi! My name is Tami and I have PKD (polycystic kidney disease). I am the fourth generation to have PKD in my family and it has not been kind to any of us. I am currently at 16% function, have a very nice AVF in my left upper arm and I am on the transplant list at Emory and at Mayo Clinic in Rochester, MN. I am not a good candidate for transplant because my PRA I and II are both 99%. (For those of you who may not know, that is my antibody levels, less than 30% is normal, anything over 40% is sensitized and since mine are so high, I am considered Highly Sensitized.)

I have a great nephrologist who believes in being very aggressive with dialysis for PKD patients, especially young and healthy ones such as myself. I've already had problems with my PTH and I'm currently taking Renagel to help control it and my cholesterol numbers are completely out of whack, especially my triglicerides! I don't eat well, everything tastes like crap, but I keep gaining weight.......go figure! As it is, my neph is happy about the weight gain because she would rather me be a little over weight at the start of dialysis than underweight.......so I use that excuse to eat a bunch of crap that I really don't need! LOL!

Anyway, I feel like I'm always sitting around waiting for the other shoe to drop. I'm a Registered Nurse with a Bachelors in Nursing and I have thought about going back to school so that I have something to do with all the time on my hands. I'd love to go back to work, but I'm reluctant because of the time commitment for in-home dialysis training. I am a Hospice Nurse and Director and that field requires a lot of time and energy, energy that's in short supply these days! I plan on using NxStage for home hemo and I am very excited about the possibility of doing Nocturnal Home Hemo using NxStage. I've toured the dialysis facility that I will be going to and have done so much research on the subject that I could probably write a nice paper on it! I am NOT looking forward to dialysis, it's frustrating, scary and intimidating, but I know I will do well as long as I keep a positive frame of mind.

I was diagnosed at the age of 21, shortly after the birth of my oldest daughter. At the time, I knew little about the disease and what I did know was not accurate. My grandmother, my mom's mom, had had PKD as well, and I knew that she had been on dialysis for 14 years before she passed away at the age of 49 due to complications of PKD, and that's about all I knew. My mom had told me she had been diagnosed at the age of 28, but that the nephrologist at the time, swore she would never have any problems with it and would live to be 80. Unfortunately, he was completely and totally  wrong and she died on October 1st of 2010, just two years after starting dialysis and at the young age of 62!

When I was first diagnosed I was told about all the potential problems that comes along with PKD such as aneurysms, PLD (polycystic liver disease), MVP (mitral valve prolapse), diverticulitis and kidney stones. I immediately had a CT scan to check for aneurysms and I closely monitored my blood pressure. Within a year of my diagnosis I was hospitalized with my first kidney infection and kidney stones (can you say fun?) and so I found myself thrown into the world of PKD and CKD. I'm an avid researcher and so I've spent the last twenty years learning everything about my disease as possible and maintaining a very pro-active approach to staying kidney healthy. Even though there is no cure and no treatment for PKD, sticking your head in the sand and ignoring it is not the best approach as my mother learned in the Summer of 2000.

It was through my PKD education that I was able to convince my mom to see a nephrologist after 25 years. In the summer of 2000 she underwent testing and discovered that her function was down to 52% and she had two very large aneurysms. Needless to say, she was shocked and terrified of what would come next. In the Winter of 2001 she went in for what would be the first of three separate brain surgeries to clip the gigantic aneurysms. Unfortunately, after the third brain surgery, in November of 2001, she had  a stroke and became paralyzed on the left side. It was a life altering event for her and the rest of the family. At the young age of 51, we found ourselves thinking about Advanced Directives and Living Wills and picking out burial plots for her. Thankfully she pulled through and even after the death of my step-father (at the age of 60) from lung cancer with mets to the brain, she still maintained 30% kidney function. However, that would not last forever and in December of 2008 she started dialysis.

My mom hated dialysis! She hated the coldness (physically and emotionally) of the dialysis unit and she hated the needle sticks. She routinely took herself off dialysis early or skipped treatments. It was hard for my sister and I to deal with and we constantly pushed her to stay on for the entire time. She started to feel worse and worse and after a year and a half of shortened or missed dialysis days, she started developing cognitive issues, mostly with her memory. My sister and I discussed Hospice care on several occasions,  but Mom kept telling us that she wasn't ready for that, she just hated being on dialysis. I remember buying her Snuggies and heated blankets for her to take to the center to help fight off the cold, but emotionally, she was just going through the motions. In September of 2010 she went into a blood pressure crisis. No one could figure out why. They did identify another aneurysm, but said it was stable and not causing any problems. The number one culprit was another stroke and it seemed the most viable option when you considered her inability to speak properly and her increased confusion. Finally, after five days, the doctors were able to get her blood pressure down from the 200's over 100's, to a more normal level and with that, her speech and attitude improved. For three days she told us that she knew she was gonna die and that she was scared. Every time, my sister and I reassured her that she would be okay, although we both had our doubts. Just when she started to turn the corner and we started to hope that things would be okay, she through a PE (pulmonary embolism) and died instantly. We were devastated!

Afterwards, my younger brother (who also has PKD) and I discussed which one of us would be next. It was a terrible and morbid conversation, but one that was relevant and had a direct impact on our lives. The events of the last week had left us afraid, hurt and totally unprepared emotionally, for our own futures and the challenges we would face, but we came away with the knowledge that we weren't going down this road alone, we had thousands of other PKD patients to help us along the way and two very important PKD patients, our Mom and Grandma, who would be helping us from "behind the scenes" so to speak. Still, the knowledge that you have a genetic disease that will bring your life to an end much sooner than your friends, spouses and other family members, is a hard pill to swallow. Some days it goes down a little easier but at other times it feels like your about to choke on it and that's disheartening.

It has only been a few months since my mother passed away and it still hurts, but I am more prepared for my future than I ever have been and I'm learning to not take ONE DAY for granted. I don't want to go on dialysis but if I plan on sticking around to see a grandchild or two, then it's my only choice. I try to explain to people who aren't going through this, how difficult it is at times, but it's something that, unfortunately, someone has to experience to really understand. I hope to be one of those dialysis patients who survive and thrive, until old age  however I am aware that at the same time, I have to maintain some semblance of reality and that's a balancing act that takes time to perfect. My biggest motivator in maintaining a positive attitude is my youngest daughter. She is sixteen and just diagnosed this past summer with PKD. While I have a very positive outlook for her long-term health (new medications and treatments are just around the corner), the best thing I can do for her is show her how doable this process is.

Thanks for having this site!
Take care and be well!

Tami
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Diagnosed PKD 1988- Age 21
Transplant List Mayo and Emory 2010
Upper Arm Fistula 2010
Dialysis Start August 15th, 2011
NxStage Home Hemo October 2011
willowtreewren
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My two beautifull granddaughters

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« Reply #1 on: May 14, 2011, 12:45:20 PM »

Hi, Tami.

What a great introduction. Yep. PKD is a real bummer. I married into a family struck with PKD (although none of us knew it at that time 42 years ago). Our daughter also has PLD.  :'(

We also did NxStage until my husband got a transplant in February.

Even with your high PRA, transplant IS a possibility. I know of two folks (one here on IHD) who have been transplanted with a PRD of 99. It is good that you are double listed.

 :cheer:

I look forward to your posts. This is a great place for information and support.

Aleta (just north of you in Tennessee!)
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
galvo
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« Reply #2 on: May 14, 2011, 04:41:36 PM »

G'day, Tami, and :welcomesign;:ausflag;. Marvellous intro. You are going to be a very valuable member, what with your personal, family and nursing experience. You will find that you have now joined a friendly and caring mob here. I hope to see you contributing often.
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Galvo
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« Reply #3 on: May 15, 2011, 02:26:37 AM »

 :welcomesign; Tami!  Goodness, you and your family have been through so much, yet you still seem so positive.  Fabulous intro.

*huggles*
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
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Going through life tied to a chair!

« Reply #4 on: May 16, 2011, 11:12:47 AM »

Hi Tami and welcome to IHD.  I'm so glad you found us.  I'm so sorry for the loss of your Mother.  I hope your kids don't get this.  That would be my fear! 

Come here often to read and learn.

Rerun, Moderator      :welcomesign;
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lmunchkin
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"There Is No Place Like Home!"

« Reply #5 on: May 16, 2011, 04:05:31 PM »

Welcome to IHD! Youv'e been through alot no doubt!  Great Intro.  Come here often!!!

lmunchkin     :flower;
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
lawphi
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« Reply #6 on: May 16, 2011, 04:50:57 PM »

Hey Tami! 

My family is from Macon, Georgia! 

Emory and Mayo are fantastic choices for transplant!  We are kidney tourism veterans!

My husband had a 94% PRA and received a kidney two and a half months after being listed at John Hopkins as part of a paired exchange program.  I will donate on June 20th.  We waited for three years at a fantastic center in NC that did not perform desensitization. 

NxStage dialysis ain't your momma's dialysis.  My husband used NxStage for two months and it changed his life immensely compared to in center dialysis.  I truly believe NxStage is responsible for my husband to be able to have a successful transplant.   His surgeon was amazed at the success and quick recovery Hammett experienced. 
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Girl meets boy with transplant, falls in love and then micromanages her way through the transplant and dialysis industry. Three years, two transplant centers and one NxStage machine later, boy gets a kidney at Johns Hopkins through a paired exchange two months after evaluation.  Donated kidney in June and went back to work after ten days.
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