My Clinical Trial Experience - Day 1

 Its been 4 1/2 years since my last Blog Post......

I started this Blog to post about my challenges of being a step parent, mother of a child diagnosed on the spectrum and just life. As life goes on things change, your priorities change and so do your problems i suppose.

Today I wanted to share my experience about being accepting into a clinical trial for ADPKD. If you know me well you know that i have PKD and PLD, Polycystic Kidney and Liver disease. One organ basically gave it to the other. This is a genetic disease that I got from my mother and she got from hers. I first found out that I had kidney disease at 18 when my mother got me tested. I was fine, healthy and no worries. Then life kind of changes. Your a teenager with a disease but there's nothing to do about it. My mother started to get sick is her late 30s into early 40s and I always told myself that I would be fine till I hit my 40s and to enjoy life. Well here I am at 42. Not on dialysis yet and not in kidney failure. Its tough going through life thinking that you will be sick when you get older and just waiting for it to happen. This past August we lost my mother to her 30 year battle with kidney disease. She suffered through 3 failed kidney transplants, about 30 surgeries and decades of main, BUT always had a positive attitude even on her last days.

For the past 2 years I have been looking into clinical trials for kidney disease. Without clinical trials drugs never get approved and help people, right? Well the first trial I tried to get into I got rejected because my kidneys were not "bad" enough. I was pretty disappointed and sulked for about a week until I started searching again. Then I came onto one in Denver that was for early stage ADPKD and applied. I received a call pretty quickly and within a month was approved! It all happened so quick. Flight booked and hotel booked immediately. I only had to pay for my own  food. Some clinical trials pay you for being in the study but at this point $$ did not matter, finding a cure does.

The drug is called Pravastatin and is actually a Phase 4 medication that is also used for people with high cholesterol. I was happy that it was Phase 4, so no one has died from the medication or had serious side effects. This study is also a double blind study which means you do not know if you are on a placebo or the drug till the conclusion on the study, which is 2 years. Some people who be so discouraged by this but without people taking the placebo clinical trials would not be approved or move onto the next phase. This study has shown to slow down the progression of cysts in the kidneys in young children which is pretty promising. So off to Denver I went.

I was pretty excited to go to Denver but the week before, my anxiety started to set in. While seeing my mother suffer for so many years and always thinking that it would be me one day its just a very surreal feeling. I don't believe my mother ever tried clinical trials but you always have to do as much as you can to survive. 

The people with the clinical trial were so nice, very committed to the cause. My first day in Denver was full of lots of paperwork and signing forms. I found out the the Department of Defense funding the trial due to the fact that anyone with PKD is discharged from the military or not approved, I found that pretty interesting. Also I found out that the University of Colorado Hospital also is conducting 4 different clinical trials on PKD. Its nice to know that there are doctors out there working their ass off to help those life me. 

The next day I had about 7 hours of testing done. I arrived for a urine test and received my first IV and went in to get an abdominal MRI. If you have ever this type of MRI you basically go into the machine with about 2 inches of space above you and hold your breathe for a very very long time multiple times. One of the times i had to hold my breathe for 40 seconds. Honestly that is a long time, you try, ill wait.............yes exhausting i know! This MRI technician was new to the PKD trials and asked a bunch of questions on my disease. At one point the clinical trial assistant told me that i had really huge organs and since my liver is so huge it pushes down on my kidneys which then push on my stomach. I'm like yep i know thats why i cant eat huge meals. (i miss hamburgers).

After the MRI I went to get a 5 hour blood test which test your GFR. This is your kidney function. I got another IV put in that injected some radioactive chemical in my body and had to take a pill so that my thyroid would not be effected. No big deal :) Then i had to have blood drawn in multiple time increments up to 5 hours along. 5 minutes, 10 minutes, 30 minutes etc. It actually wasn't as bad as it sounded. The one hardship for me was just looking down at my IV and remembering the countless times that I saw my mother with one. The multiple times they punctured her not being able to find her veins because they had become so tiny and hard to find. Being in this state frightens me to death but I am trying to be strong and positive. 

I went home the next day with my medication which i will take once a day for 2 years and my own blood pressure machine where i will have to check my blood pressure once a month and get blood tested every 6 weeks.

I often get asked will you get your kids tested. My answer is always no. Why put my kids through that pain of knowing there is something wrong. When they are 18 and they want to know of course I will support them. I never had any symptoms till I hit 40 with the large liver and both my liver and kidney function are perfect. Why open up that can of worms when there is no cure and NO preventative care you can take. That's my thought anyways.

I'm hoping this trial goes well and that these 2 years and painless. Ill update you on my journey and thank you for reading this VERY long post. Until next time!

Explaining Death to My 6 Year Old Aspie

While Dom was growing up, his whole 6 years, i would always avoid telling him about death, sadness and troubles. Partly because he was only a child and once you begin to address adult issues thats when their innocence is partly gone. Not only is Dom only 6 years old but he is also a 6 year old with Aspergers and i was never too sure how to explain to him these sad milestones.

About a week and a half ago a very dear and close friend to us lost their battle with brain cancer. Her name was Jasmine and she was a pure angel. I worked as Jasmine's one to one aide and through her battle with cancer our families got close and Dom played with both Jasmine and her younger brother. As Jasmine got sick I would mention to Dom that she did not feel well and couldnt play and he did not ask any questions. I also organized a fundraiser for Jasmine to raise money for medical bills and I called it a "party for Jasmine" and Dom did not ask any questions either.

When Jasmine passed i did not know how or when to explain this death to him. In her last few weeks her family moved across the country to California so i didnt have to mention it to him and he wouldnt have none any better. This past weekend the family of Jasmine were going to celebrate her life by releasing pink balloons and eating cupcakes in her honor and i just couldnt do the same, this is when I decided to tell Dom the truth.

As i sat Dom down to tell him about Jasmine, i was a ball of nerves. I held Dom's hand so that i could have his full attention and told him that i had very sad news for him. I told him that Jasmine got very sick with a disease and died. The look on Dom's face was very unforgettable. I could see that he was thinking and trying to wrap himself around what i just told him and then the questions began. How old was Jasmine? And i said 5. He then said, but she will never know her 1st grade teacher? I said no, she will not. He then said, but how can she die I thought only old people died. As he said this I knew that i had to pick my words very closely as to not scare Dom about being sick and dying himself. I told him that sometimes people die when they are old and sometimes people get diseases when they are young and cant get better. He asked me the question that I dreaded and said, will i die young too? I said that you are healthy and that you do not have anything wrong with your brain so you are fine.

I then mentioned that to celebrate Jasmine we were going to release pink balloons up in the sky to heaven. Dom then said i think that will make her smile, and i agreed. As the days passed Dom would randomly say how sad he is that Jasmine died and how he wishes that she didnt have to die. He even asked if the balloons we released in the sky reached heaven yet and i said Yes.

Right now I feel that Dom is handling Jasmine's death ok, i am not sure if he fully understands it, but i am trying to answer his questions and reassure him that its ok to ask questions and taking it one day at a time.

We miss Jasmine alot and hope that she is at peace, in heaven and eating many chocolate cupcakes with pink frosting while chasing her pink balloons!