Archive for July, 2010


Our journey began with the gynecologist. Who knew at this point we would have seen so many doctors. Here’s a list:
















Gabriel alone started with one neonatologist at the first hospital, then saw a second one at the second NICU; then saw the first nephrologist who sucked, and then sees our current one; had to see an ophthalmologist because he was 6 weeks early; had to see a cardiologist first because of his heart murmur and then because of his high blood pressure; had to go to an audiologist because he wasn’t talking to check his hearing; went to a endocrinologist because he is not growing who told me to feed him cheetos so now has to get a second opinion from another one; saw a urologist just to make sure his excess urine was only the ARPKD and not anything else; saw an otolaryngologist because of his bloody noses; sees the hepatologist at NIH because of his CHF (liver issue). That’s ten different doctors for Gabe and more than one appointment with most of them.  Max has been to 3 urologists: the first one was before the ARPKD diagnosis because he had a meatal stenosis (look that one up!!), the second one was to make sure his excess urine wasn’t from anything besides ARPKD (before Gabe’s appt) and he was the worst and then finally the third one who I took Gabe to who sadly passed away in a car accident last month. Max has also seen an audiologist, an otolaryngologist, the hepatologist, a nephrologist, a dermatologist (had to have a mole removed from his ear last year), and will be seeing a pulmonologist in 2 weeks because there were some issues with a pulmonary function test he did at the NIH. That’s 9 for Max. Wow. Those are a lot of appointments, a lot of specialists, and a lot of copays!!! Plus the pediatrician for both of them who for some reason doesn’t have ologist on their title.


July 31, 2010 at 10:11 pm Leave a comment


I often wonder why certain people work in doctor’s offices. There should be requirements for personality when you apply for a job there. Especially at a pediatric office but really any type of doctor’s office. I just called to make an appointment for Gabe to see an endocrinologist. The secretary was so nasty on the phone. She gave me a 2:15 appointment and I asked how long the initial appointments usually last. She was so snotty and said they don’t like to say how long because sometimes the doctor is running late. So then of course I asked if the doctor is usually running late and she again said they don’t like to answer that and was so rude about it. I said we see a lot of doctors because of my son’s medical condition and we don’t like to wait for hours. She was just plain rude. At this point do I keep the appointment or not. I also asked if I could call an hour ahead of the appointment time to see if the doctor was running on time. She said no because the doctor could catch up. So of course I got off the phone in tears. I know I am just in a mood today and emotional but these people really should have some empathy for the patients and their mothers when they call up.  Just a feeling sorry for myself kind of day and didn’t need an obnoxiously rude receptionist to help out with the situation.

July 27, 2010 at 10:09 am Leave a comment

Monday Memories (Sunday night for Monday!!)

Max is home from camp!! He’s so big. And kind of has a new big attitude!!  But we are so happy to have him home. And isn’t he the cutest!

Out of the blue the other day he asked me if because he has PKD do his kidneys continue to grow. Interesting. He must be listening to me talking a lot about Gabe’s kidneys and how big they are.

July 25, 2010 at 9:37 pm 1 comment


I’ve been thinking a lot about how I feel so lucky we didn’t have to make any choices about whether or not to have more children after the ARPKD diagnosis.  I am also glad that we did not have a prenatal diagnosis of ARPKD and that the doctors never told us there was no hope for Gabe. What saddens me is that there are so many doctors out there who give no hope for survival. What I don’t understand is how they can actually say this. I’ve asked the guru in the field many times how the doctors know there is no hope and how they know that there is no lung tissue. Her answer is they just don’t know. I do know there is one mutation of the gene for ARPKD that is almost always fatal and even with intervention these babies die.  And I do strongly believe that a parent has a right to make whatever decision they feel is best for their child as far as if and when to put their child on the ventilator and if and when to take them off. But what is frustrating is that I am not always sure that all parents are well informed to make this decision and that the doctors are not helping the situation. For us there were no decisions that needed to be made. The thing is though that if Gabe had not been put on a ventilator or taken off after a day or so he would have died. That thought scares and saddens me. I am grateful the doctors were not thinking ARPKD and were not thinking there was no hope for survival because they then tried their hardest to save him and didn’t even think about taking him off of the ventilator. And luckily his kidneys started functioning and he was urinating and his lungs did develop.

Because Gabe was our third son and we knew before he was born that he would be our last we never had to think about the decision to have more children. But we did have to decide on our own to have our older two boys tested. The thing that angers me is that all of the doctors out there told us not to worry about our older boys. Once we found out that Gabe had ARPKD and that it was a genetic disease we asked about our older boys. And everyone’s thinking was that they were “healthy” because they had no symptoms of ARPKD. At the time they were three and six. Now luckily for us our doctors had taken both of their blood pressures and they were both normal. The sad and frustrating thing is many pediatrician’s do not check children’s blood pressure until they are four or five. So you could have an older child who appears “healthy” but has never had their blood pressure checked.  When we decided to have Max and Nate tested Max had no symptoms. We were actually thinking there was more of a likelihood that it could be Nate since he was three and thought that since Max was six there was no way he had it. We were shocked when the radiologist said Max’s kidneys were echogenic and slightly enlarged. And we were devastated. That was a harder diagnosis for us than Gabe’s mainly because Gabe was born sick and we were expecting bad news.  I just feel there are so many doctors out who are misinformed on this disease and just do not know enough about it. I feel that all parents should have all of the information about ARPKD before they make any type of decision. They should have all of the facts before they decide to not save their baby, or to take their baby off of the ventilator, or to decide to not have their older child/children tested.  Because how can anyone make the best decision if they do not know all of the facts.  There are just too many choices out there that need to be made surrounding this disease and they should only be made when you know all there is to know about this disease.

July 16, 2010 at 9:42 am Leave a comment


Last night there was a Cocktails for a Cure party for the PKD Foundation. Three couples came who all lost baby girls to ARPKD at birth.  I had been emailing all of them but had never met them in person.  Even though my ARPKD story has turned out so differently than theirs I could feel some of their pain.  If things had been different I could be them and they could be me.  People around me live their lives with their healthy children and take things for granted and here are these three couples whose lives have changed forever.  I am grateful for my boys and I am grateful that the PKD Foundation has helped bring these families together and bring me to these families. I hope I have helped them in some small way and hope to continue to help families like theirs. I had so many emotions last night and cannot even express what it felt like to meet these people and listen to their stories. I feel honored that they shared their ARPKD stories with me and feel thankful that they were able to come last night. I am grateful that I have helped each of them find the others to have someone who can experience their pain more than I can and hopefully someone to lean on.

July 14, 2010 at 2:58 pm Leave a comment

Monday Memories

This was a hike we did last week. If you look closely you will see Theo, our new puppy, swimming across the river to me. It was a great day!

July 12, 2010 at 8:20 pm Leave a comment

The boys are well……

Someone said that to me the other day in a somewhat question somewhat statement. “Well”… what a word. Actually no they are not “well”. They have a lifelong chronic kidney disease. I wouldn’t describe them as “well”. So I told her that Gabe was anemic, was deficient in his growth hormone, was on 3 blood pressure medications, had adult sized kidneys, and would most likely need a transplant in adolescence. So yeah he’s “well”.  Then she had enough nerve to say “at least those are all manageable things”. Manageable. I so wanted to say “you know what? I’m tired of managing them, would you like to??”. I’m sure she didn’t mean any harm, but come on (as Nate likes to say!). ARGH!!!!!!!!

July 9, 2010 at 7:04 am 1 comment

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