PKD Pugilist - one woman's navigation through life and renal disease.

After the Walk

2008-09-21T06:39:00.000-07:00

The 2008 Walk for PKD in Orlando was lots of fun. Nine out of twelve teammates walked with me yesterday. We didn't quite reach our fundraising goals but I think we did a fantastic job especially considering the state of the economy. The park that the walk was held in is so beautiful. I had no idea it was even there! When I asked I was told approximately 80 walkers participated with a total raised of over $10,000. My team contributed $1,000 of that!

The people in charge did a great job. The check in process was really smooth and the decorations looked nice. There were breakfast foods, drinks, Italian ice for after the walk, and of course tables and tables of educational info about PKD. I have to admit there was a poster on display that had this picture of a normal kidney next to a PKD kidney that made me weak in the knees. I mean, I logically know what the progression of the disease is, I know the outlook, I know the statistics but oh my God I've never seen that picture before. It scared the hell out of me and makes me want to cry even now as I remember what it looked like. I don't want that to happen to me. I don't want that to happen to me. Ok ok being scared and crying isn't helpful. I need to be more like Scarlett O'Hara... I'll think about it another day.

This was my first time walking for PKD let alone being the captain of a team. Hopefully I did a good job. Walking was pretty hard on me yesterday. I actually didn't do the whole 5k because I was just so overheated and breathing too hard. My face was beet red and my husband wouldn't let me continue. That was probably a good call because I am in so much pain now. My back and hips kept me up all night and are continuing today. Luckily, we have no plans for the day. The only thing I have to do for the rest of the day is another 24-hour urine catch. Then tomorrow I go to the lab for bloodwork and to drop off the jug. In the afternoon is an OB appointment. I start my third trimester next week...

Thank you walkers, donors, and supporters of Walk for PKD

2008-09-18T20:17:00.000-07:00

National PKD Awareness week is in full swing. Last night I went to the Insurance Professionals of Greater Orlando (IPOGO) and was warmly welcomed by everyone. It was great to meet many of our walkers and donors. I was honored to be given the opportunity to speak about PKD and share information with them. The IPOGO group is a generous one and frankly they overwhelmed me with their “pass the hat” contributions.

This walk has been such a fulfilling experience for me. Even in these tough economic times, generosity of both time and money are still evident. As I told the IPOGO group last night this is a very personal issue for me as I’m fighting for the opportunity to have a full life expectancy along with good health and quality of life. This can come from supporting research to find a cure for PKD. You, the walkers, donors, and supporters are now a part of that mission so from the bottom of my heart I thank you.

Braxton-Hicks Contractions

2008-09-15T19:25:00.000-07:00

Oh, forgot to mention earlier... I started getting Braxton-Hicks contractions already!

When I started them I was only 23 weeks. I suspected a kidney stone in the preceding days. Later in the week I went to the doctor in an emergency situation so they could rule out pre-term labor. Although I am pretty convinced my doctor isn't sure what to think about the PKD it is a convenient scape goat for them.

So, the (very) early onset of Braxton-Hicks is being blamed on the PKD and more specifically they suggested the kidney stone set it off by "rubbing against my uterus and causing the contractions to begin". lol

Doctor's prognosis: will continue throughout the rest of the pregnancy and only get stronger. Great.

Free Educational Webinar: PKD Basics

2008-09-15T19:23:00.000-07:00

October 14, 2008
8 p.m. (ET)
Featured Speaker: Dr. Ronald Perrone, Tufts University, Boston, MA

Register from the PKD Foundation website!

National PKD Awareness Week

2008-09-15T19:20:00.000-07:00

Don't forget... it's the 3rd annual National PKD Awareness Week!

I will be speaking to a group of insurance professionals on Wednesday night about my experience with PKD and the Walk on Saturday.

Update on baseline

2008-09-15T19:16:00.000-07:00

Hi, just a quick update (it's been so long since I posted!). The 24 hr urine test was messed up by Quest labs. They only ran the creatinine clearance and apparently skipped the protein. Ugh. So, have to do another one. And what makes me the most irritated about the situation is they are going to bill my health insurance carrier for both of them even though they screwed it up. If they did their job properly I would only have to do this once. Typical.

As far as the pregnancy goes... everything is wonderful!!! Baby is growing leaps and bounds and I'm feeling very well. The only complaint I have is sciatica in my left hip but I've been getting massages, using a heating pad, taking Tylenol, and sleeping with a pillow between my legs. What more can a girl do?

Pregnancy Baseline Testing

2008-08-23T19:32:00.000-07:00

Following my visit with the high-risk pregnancy specialist (perinatologist)...
I have to do another 24-hr urine test, creatinine clearance, and a myriad of blood work. I'm going to start the 24-hr urine in the morning. What a pain in the ass. Plus, it's just plain embarrassing. It's reality though. Part of my life now.

Also, because I'm apparently at a higher risk for the pregnancy related complication called preeclamsia my doctors (both the perinatologist and the O/B) have ordered that I am not allowed to travel after the 24th week. I can only go within one hour driving distance from home. For those of you not familiar with where I live I can tell you that there is nothing within an hour of my house except Orlando. I know I know Orlando is a big place and I should be happy that I can at least go over there. However, I can't go to my mom's house, grandparents house, or my in-laws house because they all live farther away.

The good news is that I still have a green light to participate in the 2008 Walk for a Cure in Orlando. Unless something changes with my health the doctors are very supportive of any exercise.

More testing

2008-08-18T16:01:00.000-07:00

I'm getting pretty used to being poked and prodded. In fact, even if you don't include the OB/Gyn visits since the pregnancy I've still seen more doctors in the last year than in my entire lifetime. So, it came as no shock today when the doctor ordered a battery of blood work and a 24hr urine. Woopee! She mentioned the dreaded word preeclampsia and advised me that due to my higher risk for that she will watch me closely and I'm to report any neurological changes immediately (migraine, blurred vision, blindness, etc.). Also she was hoping I would have gained 10 but preferably 15 pounds by 20 weeks and I've only put on 4 at the 21 week mark. Hmmm not sure what more I can do I feel like I'm eatting like a horse.

Oh boy!

2008-08-14T19:38:00.000-07:00

That's right everyone. We're having a baby boy!

We met with the perinatologist and had our level 2 ultrasound. Everything looks good with the baby and my blood pressure is still holding at a good rate. The specialist is requesting a 24 hour urine screen so that we can baseline my protein and then monitor it throughout the rest of the pregnancy.

Penta Screen

2008-08-05T12:05:00.000-07:00

Just a note to say my penta screen (testing for evidence of spina bifida and Down's syndrome) came back negative. My creatinine screen hasn't come back yet because that one takes a little longer. Going to see the high risk specialist tomorrow. Will keep you posted. :)

My letter to Oprah

2008-07-14T19:28:00.000-07:00

I wrote a letter to Oprah today. I hope she does a show about PKD. Here's what I said:

I have been significantly humbled twice in my life. Have you ever lost someone important to you? I have and each time it happened I found myself with an increased appreciation for living. Although losing a loved one is devastating the effects on those still alive can be valuable. It can inspire feelings of virility and gratitude and an understanding of how quickly everything can change. But alas, the romance of it doesn’t last long. Sure I stopped to smell the roses in the beginning but it’s all too easy to fall back into the daily grind.

It appears to be different though when something happens directly to you. When your life is threatened all of the sudden the appreciation for the fragility of life seems to be permanent. Last year I was diagnosed with Polycystic Kidney Disease (PKD), the most common life-threatening genetic disease. There is no cure. I am humbled to know that my life expectancy is less than that of the average woman. I know that dialysis and organ transplantation are a real possibility. I know that my family will suffer while watching me suffer. But for the time being I am “healthy”, I am “normal” and I am thankful for every blessing. I don’t know when my kidneys will fail but I live every day full of appreciation and gratitude. I live my best life.

And now, I am humbled again. I am pregnant! Already I realize that my unborn child is more important to me than anything or anyone. My husband and I are optimists and we know there is a 50% chance our child will have a healthy life free from PKD. We have faith that technology and medical breakthroughs will lead to a cure. But the public doesn’t know what PKD is even though it affects more than 600,000 Americans and 12.5 million people worldwide. PKD affects more people than Down syndrome, cystic fibrosis, muscular dystrophy and sickle cell anemia combined.

People need to know about this disease and how they can help. Patients need to know America cares and is willing to do what it takes to find a cure.

Orlando Walk for PKD

2008-06-28T15:38:00.000-07:00

Hi! The annual Walk for PKD is a 5k walk on September 20th that I'm going to do in Orlando. Does anyone want to be healthy and walk with me? Here is the link to my page where you can register (and/or make a donation) and here is where you can get general info about PKD and the September event. If you would like to walk with me please register and join the team called Muffin in the Oven. LOL I know I know... but I couldn't think of anything else. I've got baby on the brain.

I hope to see many of you out there with me!

December 28, 2008

2008-06-25T12:31:00.000-07:00

Guess what that date is?? My due date. That's right... I'm three months pregnant!

We didn't want to say anything sooner because we wanted to make it past the 12 week milestone. We had some scares earlier and had to go the emergency room at one point but everything is fine now :)

No problems but I have to see a high-risk perinatal specialist in August. My blood pressure has been fine so far.

Last week we heard the baby's heartbeat for the first time and we also got a great ultrasound. It was amazing - we got to see the baby "yawning" and skirming/wiggling around. All I can say is WOW!

I will keep you posted on how things go.

Effect of pregnancy on renal disease

2008-04-28T18:25:00.001-07:00

Hello out there. I've just starting doing some research about pregnancy and kidney disease. I found an interesting article and wanted to see if anyone has opinions or comments on my findings/interpretations...

It appears in this paper that there is a strong correlation between the status of kidney function prior to conception and how much (if any) the kidney function will decline. In other words, if your kidneys are functioning well you are likely to lose very little function over the course of the pregnancy but if your functioning is low to begin with the pregnancy will probably be very taxing on your kidneys.

The paper states that "16% of pregnant patients with mild renal insufficiency had a decline in renal function". However, the severity of the decline is unaddressed in the paper. It goes on to say, "about 6% of these patients progressed to peripartum ESRD.

So, I took that to mean that if you had 1,000 pregnant women with mild renal insufficiency 160 of them would experience some decline in renal function with 10 of them progressing to peripartum ESRD. Also it can be noted that UTIs and hypertension contribute to a decline in functioning. They occur in normal pregnancies and also in people who have kidney disease so when you have both things going on I guess there's a double-whammy?

The paper suggests prenatal care every two weeks for the first 28 weeks and then weekly thereafter. Blood pressure and protein should be checked at each visit and ultrasounds done monthly.

Here is another study about Kidney Disease and Hypertension in Pregnancy.

SO, what do you think?

RIP John Ma

2008-04-25T13:41:00.000-07:00

I learned today that an old friend took his life. We met while we were in college. We took several classes together. In fact, he was the first person I met in school and many of my college memories include him. We lost touch a few years ago but I am still greatly saddened. He was so funny and had so much character. And wow what a great sushi chef! My heart goes out to all friends, family, and others who were lucky enough to know him. http://www.floridasuicideprevention.org

Kidney stone(s) and UTI

2008-02-15T16:30:00.000-08:00

Just wanted to say my back feels better and my fever is gone so I must have kicked this infection's butt.

Yes, we are going to try to get pregnant

2008-02-14T13:21:00.000-08:00

This post is for Andrea and anyone else wondering about having children after learning of a PKD diagnosis. Andrea mentioned in her comment that her husband was diagnosed six years ago and they are questioning whether to have children or not.

Hi Andrea, I'm approaching 31 so I'm not too far away from you and I'd ideally love four so the clock is ticking for me too! No one can tell you what to do in this situation. It is a decision you and your husband will have to make.

However, I will tell you how my husband and I came to the decision that yes we are going to try to get pregnant.

I had already been diagnosed with the disease last fall but was still awaiting more test results to determine the current state/functioning of my kidneys. I mentioned to my husband that perhaps we should not take the chance of passing the disease on to our children and should adopt instead. I couldn't take the idea of knowingly giving my children a disease that could kill them.

My husband is quite a rational person and this was his response, "How do we know what the adopted kid's medical situation is? There is a 50/50 chance of passing the disease or the chance of who knows what... Plus, by the time any child of ours has to face it there will be a cure." Now granted, that is very optimistic but we both have always dreamed of becoming parents and would like the opportunity. And whether or not our children have PKD I absolutely hope there will be a cure soon!

Now, the discussion wasn't over completely because we still didn't know what was the state of my kidneys. The tests came back (posted in previous entry) and my kidneys were lookin' good! So, I asked my nephrologist, "If I was your wife, would you recommend my getting pregnant?" You see, the other concern besides passing the disease on to the child is that the pregnancy can be hard on a woman who has PKD. I mean, pregnancy is hard on your body anyway and then you introduce a life-threatening genetic disease and things can get pretty interesting.

Well, my nephrologist said this, "Yes, you will automatically be considered a high-risk pregnancy but based on how healthy you are right now and how well your kidneys are doing I don't see any reason why you shouldn't try to have children." Now, here's the part where he really got me. He said, "The amount of joy you will bring in to your lives far outweighs the risks you will be taking." Of course, he then followed up with a disclaimer that if my health changes he reserves the right to change his opinion.

SO, my husband and I are actively trying to get pregnant (no luck so far). If my health changes we will re-evaluate the situation at that time. Oh, and I have resolved myself to the possibility that I may only be able to have one natural child depending on how hard the pregnancy is on my body. There's always adoption!

p.s. - a man named Bob has written a few comments on my blog, you should check out his website because it is the story of his wife's battle with the disease and what happened to them during the course of their pregnancies - they are obviously both very strong people

Uh oh

2008-02-12T16:44:00.000-08:00

Well, hello to anyone who reads this.

It's funny... in the last week I've had two different people comment on my lack of entries since the fall. I guess I will explain: there is a person in my life who means the world to me and he expressed serious concern that the knowledge of my diagnosis has affected me more than the disease itself. SO, I stopped blogging and decided to try to forget about everything and act normal and behave as if my doctor never said anything to me about kidney disease.

Ha! Guess what? Timing is everything.

The good news is I felt intensely nauseated last week so I went to Walgreens and was quite giddy when I bought some pregnancy tests. I took three over the course of the last week but they were all negative. Why was I feeling so sick and not preggers? Then, on Wednesday I started feeling some discomfort in my lower back on the left side. It wasn't pain per se but uncomfortable enough that I didn't want to sleep on my left side as I normally did. If it weren't in the area of my kidneys I wouldn't have thought anything of it. However, due to my diagnosis I was feeling a little paranoid. By Friday it hadn't subsisted and I noticed a slight fever so I called my doctor's office. Plus, I developed a yeast infection. (As a lady I would never normally discuss this so openly but hey this is a medical discussion.)

As the weekend progressed I thought of not going to my appointment since my back ache was intermittent at this point instead of constant but when it was present it was definitely stronger than before. So, Monday I went in for a urinalysis to confirm my doctor's suspicions. Diagnosis: I have kidney stones and a urinary tract infection. Great. Plus, there was blood present but my nephrologist says that's pretty standard for someone with PKD. So, I'm on antibiotics and the doc says if it's not better by Friday I need to go to the hospital and get a KUB x-ray to look at the kidneys and try to spot the stones. Plus, antibiotics can cause yeast infections so she told me to be prepared for it to get worse.

Here's my issue with the situation. I've been clinging to the news my nephrologist told me which is two-fold: 1) I'm healthy with no symptoms or issues with my kidneys which is great news; 2) although no prediction can be made as to the severity that the disease will affect me there are clues to be found in how it has affected/is affecting my family members which so far has just been high blood-pressure.

Ok, now I've just shown my first issue with my kidneys so I can't hold on to that whole idea of "well, it hasn't affected me physically yet". AND, my uncle told me during the holidays he's not doing so well and is taking additional medicines. His kidneys are in the 50-60% range of functioning, he's on bloodpressure meds, and now he's developed further complications but didn't want to expand on what that meant. He tells me sometimes he bleeds so much when he pees that it looks like cherry Kool-Aid.

Am not feeling very happy. I wish this never happened to me. I wish I didn't feel obligated to pretend like nothing happened so that other people don't feel uncomfortable. Don't get me wrong, I certainly don't want my identity to be consumed by PKD. There is a lot more to me than this disease. But let me say this -- it is affecting me to a degree and I just wish I didn't have to feel guilty about that and hide it like I've done something wrong. It's not like I did something to cause it or deserve it so why should I have to act secretive and blameworthy!

Results

2007-10-22T20:34:00.000-07:00

Well, great news. Apparently I couldn't be healthier (except for the kidney disease). All tests show healthy results. No symptoms of the PKD are rearing ugly heads yet. Kidney function is good, blood pressure is good, no problems noted with the MRA/MRI. Doctor says until I develop symptoms there is nothing that can be done (other than monitor my diet and blood pressure). Happy day. Plus, unless any symptoms show up I can expect normal pregnancies assuming we're lucky enough.

ps - thanks Bob for following up with me :)

More tests

2007-09-27T14:42:00.001-07:00

Got a call today to schedule a MRI and also a MRA. My nephrologist wants to rule out brain aneurysms. The tests will be within the next two weeks. I did some research (big surprise). Here are a couple websites if you want to check them out:

MRI: Viewing your brain and other soft tissues

MRA: Magnetic Resonance Angiography

More tests

2007-09-24T14:20:00.000-07:00

Hi, well, last week I did a couple more tests.

On Tuesday I went to see the urologist following the discovery of blood in my urine. Luckily he doesn't believe in being invasive unless necessary and he doesn't think there is anything other than the PKD causing the blood.

Then, on Thursday I went to radiology to get suited up in an ambulatory blood pressure monitor. I had to wear it for 24 hours and let me tell you... I was so ready to get it off by the next morning!!! It squeezed my arm so hard I had bruises! Hopefully they won't order that test again. I get the results from the tests on Hallowe'en.

Broken

2007-09-14T21:27:00.000-07:00

My poor husband. He chose a bride he thought would be a good mate to have children with. Little did he know.

I'm broken.

Blood in my pee

2007-09-13T19:28:00.000-07:00

Well, following a couple urine analysis tests my nephrologist has referred me to a urologist due to blood in my pee. The appointment is next week. Apparently I can expect to get a camera shoved up into my bladder so the doctor can have a look-see. If he doesn't like what he sees or wants a better look there may be a surgery. Oh goody.

Diagnosis

2007-09-11T19:43:00.000-07:00

I was diagnosed with ADPKD less than a week ago.

My father, who I hardly knew until 10 years ago, committed suicide last December and in the autopsy report I learned he had PKD. Since it's a genetic disease and a CT scan from a couple years ago detected "shadows" on my kidneys I decided to get officially checked so I could rule it out and not worry. Well, obviously that backfired.

Since the diagnosis I've been doing research daily. My diet has already been amended to low-protein/low-sodium. Let me tell you how much fun that has been. I was someone who LOVED to cook and try out new recipes. Definitely a carnivore. Now I could care less. I feel so blah about everything. I suppose it's because I'm upset.

I feel so lonely. I'm scared and don't feel like the people in my life can empathize with me. How long before I go into kidney failure and have to be on dialysis? Will I have to get a transplant? When will a cure be found?

My family hasn't mentioned the disease since I told them I have it. I realized Sunday night I must be pretty scared because I started crying for no known reason. I'm trying to be optimistic but that's hard at the present moment. I'm normally such a positive person. What's happening to me?