PKD: Welcome to my world

wow I finaly made it!

2009-02-19T15:48:00.003-05:00

Hello everyone,

I hope you all are doing well. Well I have finally done it. I have been approved for my PKD chapter here in Cornerbrook Newfoundland, How awesome is that! I can't wait to get started. This is my dream, to be able to help as many people as I can to cope with this disease.

I start my first support group on May 17th 2009. It will be located at the Elks Lodge at 9 Carmen ave in Cornerbrook. It will be @2pm.

This meeting will be directed at introducing myself and getting to know people. As well as an introduction to PKD and the PKD Foundation. There will be lots of goodies and information packages for everyone.

My goal is to have the Support meetings every 3 months.

I am looking forward to working with everyone to create a calm relaxing group where people can come and learn about pkd and hear other patients stories. I will be having guest speakers and video presentations throughout the year.

If you would like to join our meeting I can be reached at Newfoundlandpkdchapter@gmail.com or 709-388-0099. Please call to confirm.

Your friend Nina

I'm Back Again

2008-09-12T08:37:00.002-04:00

Hi there, How is it going?

I am doing really well. It has been quite a few months since I have posted anything on here,Sorry for not keeping up with things but life has taken some very different turns for me.

I have moved here to Newfoundland now, I made this desicion upon reuniting with my family down here. It is so wonderful to wake up in the morning, go outside , inhale the fresh salt water air and overlook the peaceful waters of the bay. I have never felt so much as peace then I am right now. I am finally where I belong.

I have great plans for my daughter and I here, and It all begins with opening up my very own chapter here. See Newfoundland has very little support to offer for people who suffer from Kidney disease, exspecially from PKD. My whole family has been suffering from the effects PKD has had on their lives with very little support at all. They don't know who to turn to or even to some point what to expect. Just when you think that things are turning out good another one ends up on Dialysis. It is so very difficult to endure these kind of feeling, not knowing what to expect or who will be next. I know every time that I get blood work done or even visits the doctor I get so stressed out and I am scared that I will be the next one!

My family is just one of the thousands who have to cope with this disease and I want to help them in any way possible.

My health is doing quite fine right now, I have been losing some weight and eating good wholesome foods. I am currently on a renal diet but I have chosen to go one step further, I have put myself on a vegetarian diet with low protein, I try to stay away from milk products and get my calcium from other products ( Because of the casein protein) and I have reduced my intake of caffeine by over half. My ultimate goal is to eliminate caffeine period. I am proud of the accomplishment I have made and the results have been awesome. I had very high protein levels before and now it is just where it needs to be. I really do believe that you are what you eat. I feel so much healthier then I have ever been. My next step is to go gluten free because I am allergic. This will help things out soo much as well. My dietitian said that gluten is hard on the kidneys anyways, so it will be a good change,( less stress for the kidneys.) I have reduced my sugar levels and use sweeteners instead in most things now.

I just want to clarify that I am not a doctor and don't recommend you start on any of these diets without proper guidance from a physician. My information has been from my own personal research and find it works for me. I myself am being monitored to make sure things are right where they need to be.

Once I get this chapter up and running I will post some information about it and keep everyone informed on it's success.

Please take care and remember you are not alone, The cure is our finish, and Together we can make a difference!
I
God bless,
Nina, PKD fighter

2007-10-28T12:51:00.000-04:00

Hello all again, I hope life has been treating you well. I just want to say thanks to all who have read my blog. To hear all your responses to my story is quit amazing . I've even made some new friends and hopefully helped some people as well.

Well things around here have been kinda hectic, I have been sick with infections for the last month and a half. I have been on lots of meds to try to clear them up(which I hate).

It all started one Sunday afternoon when I stroke a terrible pain in my lower abdomen. Man did it hurt. I couldn't sit down or lay. I figured a cysts had broken on my kidneys. I just fought through the pain. After a few hours it finally calmed down, it was bearable now so I just rested. 3 Days later I went to the clinic which they told me I had an bladder infection, The doc gave me meds and said "I'll be fine".

Well 10 days later I was in the emergencies at the hospital with extremely sever chest pains and trouble breathing. At first they couldn't get my blood pressure,so they kept trying. When they finally got it ,it was 170 over 80 something, They brought me in right away to the cardiac care and hooked me up to make sure everything was ok. I waited there hooked up to monitors and scared. They did an Eco and chest x-ray to see if there is anything wrong. But nothing showed up. My blood pressure finally went down and they determined that I had inflammation around the wall of my heart causing the chest pain each time I breathed. I also had an infection still which was probably causing the inflammation. So They released me with more meds and I was to wear a heart monitor to track my heart rhythm to see for anything out of sorts. All turned up good.

Well I thought that things would start getting better now but guess what the infection didn't go away. I ended up going to see my doctor who prescribed more anti-inflammatory meds for my chest and more antibiotics for another infection. I thought for surely things would get better now but they did not.

The bladder infection finally cleared up and I had about 2 days of feeling great before I started getting the sniffles and stuffy nose, I thought well just a head cold nothing to worry about, but before you knew it I was back at the doctors office with a sever sore throat and major congestion on my chest. It turned out I had an ear, throat and Respiratory infection which also included high blood pressure. She has treated me now for the infection and it has been five days since my last dose. The head cold is gone now but I am still quite congested, I will be making another appointment to see her about it if it doesn't clear up in the next few days.

I have an appointment to have a blood pressure monitor test done on the 13th of November, hopefully things turn out ok with that and I don't have to start meds for that too.

Well I 'll keep you all informed on how thing are going, and thanks again for all the support, it really does help.

Nina

In the Beginning

2007-07-10T21:27:00.000-04:00

I was waiting in the doctors office with my mom at the age of 13,when the doctor told me something that would effect my life forever, I had PKD, (Polycystic Kidney Disease) My feelings were all over the place and fear quickly set in. I didn't know much about the disease except that it was genetic, I often heard my mom talk about it, for she herself had it along with the my brother and the rest of my family. I could safely say I was scared and didn't know what to expect next. The doctor explained a little about the kidneys and that maybe one-day I might need a new one or go on dialysis. But she said, "try not to worry because the future holds promising things for a cure". Unfortunately that just did not help. I felt like something was invading my body and time would slowly take it over, and I had no way of stopping it.

Time passed on and the fear continued to grow, Every 2 years I would go in for a check up to make sure things were ok, but with each visit it became clearer that this was not going away. All though my kidneys were functioning properly the cysts were beginning to grow. I was on an emotional roller coaster where the ride just did not seem to end. Not only was I dealing with my disease and it's fears I also had to deal with my family. They themselves were trying to deal with the effects of PKD in their lives.

My Uncle Calvin passed away in 1990 due to an aneurysm, which is something that often comes with the disease as well. He had just gotten his arm done to receive dialysis but it was too late. My other uncle Don died in 2001 after fighting for 6 years on dialysis. He had been told that he would never be able to receive a transplant due to heart valve blockages.

As a teenager I found myself overwhelmed with all that I had to deal with and went into sever depression. I felt like everyone around me was sick or dying and I was so worried about my mom, because she was almost there as well. I dedicated the rest of my teenage life trying to help her so things wouldn't be so difficult. In 1999 I had my first child, a beautiful baby girl, I was now preparing for motherhood and the joy was incredible, for the first time in my life I realized that I could do this, that life really was worth living. But along with the happy feelings came bad news, 4 months later my mom started dialysis.

The next 8 years were horrible, her body just did not like the Idea of being on dialysis and seemed to reject everything. She went through so many surgeries to find a working access site, which never lasted long, and then she had her 2 Kidneys removed and thyroid glands as well. She kept on fighting though and I was there with her every step of the way. It hurt to see her go through so much but I knew it was for a reason, I do believe we all have our own stuff to go through in this life and this is just the way hers was meant to be. For God says that he will never give us more then we can handle even if we think it's too hard. On June 16th 2006 my mom passed away, it is so hard not having her here with me but I know one day I will be with her again in Heaven.

Watching my family and especially my mom fight so hard to just live, is what has given me the courage to stand up and make a difference. I will continue fighting for them, for myself and for every other person out there in the world who is effected by this disease, I will not give up until there is a cure!

In this last year both my Aunt Becky and Uncle John have received kidney transplants, What a miracle and they are doing very well. As of this date my kidneys are doing good. I have an enlarged spleen, which the doctors are looking into to finding out the cause and a few months ago I found out that both my daughter and I have a Bicuspid Aortic Valve, but everything is still working great. Talk to you soon.