Can’t get past it

I am having a really hard time being with people with “healthy” children.  We went to a birthday party last night for someone Matt works with.  He was turning 40 and his sister did a power point on his life with tons of pictures. For some reason it really depressed me.  I seem to be in a funk with this whole kidney thing.  I hate that we even have to deal with it. I do know there are worse things out there. And I do know our situation could be a lot worse. But, I just hate dealing with it. I would love to live a blissful, ignorant life and not have a care or worry.  Some days are better than others, but right now I seem to be sad about our life. I think being in DC for NIH and then Dallas for the PKD Convention and then having to come back to reality was hard for me.  Even though those were both PKD related it was still hard to come back to my life here in NY. At least in DC and in Dallas everyone “got it” and could relate to our situation. Matt was talking yesterday about how they are doing lay offs at work and how worried he is because of the economy. What if he got layed off and we didn’t have health insurance? We couldn’t live without health insurance.  There is just too much to think about.

Why I need a new pediatrician

I hate change. I really do. Which is one reason why I don’t want to find a new pediatrician, but I know I have to. These are just some of the many comments I have heard from my practice over the last year or so alone.

“Do you want this to be a kidney thing? If not then let’s drop it”. When I asked why Nate is often wet during the day.

“You take his blood pressure but not his temperature?” When I told the doctor about a mild fever Max had that I hadn’t taken with a thermometer.

“Remind me is this the kidney lung guy”. When I called in to talk about Gabe having the croup.

“Just go to the ER” click. When I called in about Gabe falling and gashing his head on the radiator. No follow up calls after that.

“It’s his face you want it to be perfect, don’t you?”. When I called in about 4 weeks after the last stitches incident to ask if I needed to go to the ER again. It was 5:15 PM and I had 5 boys at my house and was home alone.

Reasons why I should leave:

1. Wait time averages 45 minutes to an hour

2. Long appointments. You see the doctor and then when the nurse comes in to do the shots the doctor goes to see another patient. Then you have to wait until he finishes with the other patient before you have your wrap up.

3. No follow up calls, ever.

4. No communication between the doctors.

5. One file folder with all three boys papers in it, all mixed up together.

6. No email, like Dr Weiss (my awesome nephrologist) has

7. I have to remind them to do blood pressure checks.

8. Half the nurses suck at doing the blood pressure checks.

9. I really only want to see one out of the now 4 doctors and sometimes he isn’t the best either.

10. One of the five doctors left and they are not replacing him and are still accepting new patients.

 

 

Crazy Car Service Driver

Last week on my way to the airport I had a car service driver who said he was into “holistic medicine” and knew a lot about it and wanted to share it all with me for the 30 minute car ride to Laguardia. Fun!  So these were his key points:

1. Your thoughts can change everything

2. You can actually change your DNA if you try hard enough

3. When we want something badly enough we can get it

4. There is never a disease with no cure, there are treatments for everything

5. Our energy can heal us

The reason the conversation started was he said if you have your health you have everything.  I thought I could educate one more person on PKD so I told him about my boys. Then he started on his rampage.  I know that medicine is not a complete science at this point and there is still so much that doctors don’t even know. But there is a big part of me that is very skeptical and often questions these new age and holistic type practices.  

What I am wondering is since I want to be rich and skinny if I keep thinking about it will it really, truly happen???  I don’t think I will hold my breath on that one. I would love to continue to think that the boys will be “healthy” one day…..

Anxious

I try so hard to control my emotions. I used to be so laid back. But now I find myself holding it all in so I don’t yell at the boys. I am so anxious with them and get so frustrated.  Sometimes they are the sweetest things and sometimes they get under my skin so badly I want to scream. Why is that? Is this just typical boy stuff or is it more than that? For the most part they have really good behavior but other times it’s like they never listen to me at all. You would think that after being away for 5 days I would be as calm as ever with them but that is just not the case.  

Matt took them up to my parents over the weekend and my mom cannot stop raving about how wonderful Matt is with them. What a great dad he is and how impressed she was that he packed them all up by himself and brought them up there. Now the week before that when Matt was in Germany for 5 days what did she think I was doing around here… sitting on my butt while the boys did everything. Who does she think cooks, cleans, does the grocery shopping, gets them ready for school, gets them ready for bed, plans all of the meals, pays the bills…. not to mention works part time out of the house. I guess that’s somebody else. I never hear how great it is that I do all those things, but the minute Matt does one he is so wonderful.  And when I am out of town his parents are so anxious to call and come over to help out but when he is gone it just doesn’t happen. ( I actually do think Matt is a great dad and does work hard at work during the day and then comes home and plays with the kids. That is not what I am complaining about here.)

I guess this turned into a bitch session. But I am frustrated by my frustrations.  I just took this 8 week parenting class but think I need it every week to stay successful with it.  I just want my boys to grow up and think I was a good mom to them and want to emulate me with their own families.

Mothers

Is it always a definite thing that eventually you turn in to your mother?  The older my mom gets the more she is turning in to her mom. And I worry about me. Matt often says I have certain mannerisms that my mom has. Don’t get me wrong… I love my mom and am very close to her, but am just very different from her and the thought of turning into her often scares me.  We went to the grocery store together and I almost lost it. It was raining and her shoes got wet on the way in. For most of the hour in the store she talked about how she only brought one pair or shoes with her (down from the Berkshires) and would they ever dry. Then whenever I would pick out anything she would say “Are you sure you want that”. Like the napkins. I picked out napkins with a little design. She said “are you sure you want those”. I said yes (obviously since I had picked them out and put them in the basket). Then she said “don’t you want the plain ones?”. I then said I didn’t care. Then she said “well, what do you think?”. Oh, my!! In my life what the napkins look like really don’t matter. I walked down the aisle, quickly looked at the napkins, and grabbed a bag that looked nice, but really who cares!!!!  The thing is my mom is pretty surface and those are the things she worries about. For me I have so many other things to worry about I try not to also spend too much time thinking about things like what kind of napkins to buy. Now, am I being petty at this point that I am writing a whole post on this??? Who knows.  

I think the main thing I am frustrated at is the lack of empathy from my parents and in laws and really most of my family and friends as to the boys’ situation.  Really their lack of empathy to me. No one really ever asks how Matt or I are doing. On occasion I will get a question on the boys’ status but other than that not much more.  So then when my mom is spending way too much time on picking out napkins I really wish she were spending more time talking to me about my life and the boys’ health. But, as Lovey (my therapist) says I cannot change my family but I can change my response to them. Hmm…..

Hanging over my head

We just got back from a week at NIH (National Institutes of Health). We participated for the second time in a research study on ARPKD/CHF. The boys were given various tests while there: echocardiograms, blood work, sonograms, an MRI for Max, 24 hour urine tests (yuck), stool samples, daily blood pressures and a 24 hour b/p test, pulmonary function test for Max, and some prodding from the doctors as well.  We learned a lot while we were there. We learned that things have remained fairly status quo for the last year, which is great news as far as ARPKD goes.  The doctors said they were pleasantly surprised.  We also learned a lot about our DNA. Did you know that 1 in 70 people carry a mutation for ARPKD? Matt and I were just lucky enough we both carried it and got married and have 2 kids with it. What are the odds?  The odds are that 1 in 70 carry the gene and 1 in 4900 will get married and 1 in 20,000 to actually have ARPKD.  Get it?? I actually carry the common ARPKD gene and Matt carries one they have never seen before.  Maybe Matt’s unknown ARPKD gene is what causes the boys to have a milder form. Who knows.  

What I do know is that even though we were given good news this week or as good as it gets for ARPKD why I am still cranky?  The thing is that this disease is always hanging over my head.  I am always waiting for the other shoe to drop.  This disease hits me in the face every day. It never goes away. I know that they have a milder form and are fairly stable at this point but it’s still there. It won’t go away. And the not knowing is what is really killing me. I hate the unknown.  I hate not knowing when things will start to change, when they might need a transplant, when ….

Why?

Why is it that when you go to a doctor’s appointment for the most part the secretary is not the friendliest person in the world? And why is it that they make you fill out the same information over and over that is already in your file… just to update theirs even if yours hasn’t changed? And why is it that you have to write down your same insurance information when they are going to copy your card anyway? And why is it that they have to be rude about it? Even when you have three kids killing each other in the waiting room… and an old lady asking where the mother is…while you are running back and forth to turn in all of this information.

And to top it all off the nurse asked if Max were on any medications. I told her enalapril (which is for high blood pressure). It said in his chart (that I just filled out for the second time) that he has PKD. Then she has the nerve, stupidity, whatever it is to ask if he is healthy? Is a person who has PKD healthy?? Hmm?? How do you answer that. I said he has PKD. And then she still had the nerve and stupidity to say but is he healthy? Ugh!!!!  Little things like the aggravation with the secretary and the ignorance of the nurse sometimes push me over the edge. 

Off the subject but still on the subject of annoyances with doctors…. a few weeks ago when Gabe needed stitches for the second time in two months I told the plastic surgeon that Gabe had PKD. He asked me who had it – my husband or me. I told him neither; that Gabe has the recessive form and we carry the gene. Can you actually believe that he questioned me on that. He didn’t believe me only because he had never heard of ARPKD.  I don’t know what is more frustrating the fact that he had never heard of it or the fact that he didn’t believe me.  Trust me I know. I spend most of my free time either online reading about it, volunteering my time to the PKD Foundation, going to doctor’s appts about it, reading my friends’ blogs whose children have, reading posts on the list serve….. Am I sure???

the day our life changed

It’s amazing that something that happened 26 months ago stays with me so clearly.  I was 34 weeks pregnant and I went in for an ultrasound. Two weeks before I had lost a pound and was carrying small so my doctor said to do a sonogram at my next appointment. I went in to the sonogram expecting nothing unusual. Then the technician asked if I had ever had low amniotic fluid with my two other pregnancies.  Then she said that she thought the kidneys looked enlarged.  She sent me over to my doctor’s office. As I stood in the hall I heard my doctor on the phone saying something about sending a patient over and polycystic kidney disease. I thought she said they didn’t think it was pkd but she must have been saying they needed to rule it out.  

I went over the hospital and on my way tried to call Matt. He was in a meeting and I couldn’t get a hold of him. I called our friend Mike and told him to reach Matt.  Luckily we finally reached Matt and he got to the hospital about 2 hours later. Then the doctor said they wanted to monitor me over night since the baby’s vitals were okay.  The next morning we did another sonogram with a perinatologist and one of our OB’s. They all said the kidneys looked fine (which in hindsight is hard to believe). But I didn’t have any amniotic fluid. Evidently you should have five areas of level five and I had one area of level one.  They decided I should have a C-Section, which was then scheduled for noon that day.

No one thought Gabe would be as sick as he was when he was born. They had a hard time getting him out and then they whisked him away to the NICU. Then about every hour the NICU doctor kept coming in and saying Gabe was a little bit sicker then they thought. Then that he had a double pneumothorax. Then that he needed to be intubated. Then that he needed to be transferred to Columbia Presbyterian. Then that he might not make it through the night.

He bounced back once down at Columbia after a few ups and downs, but that is another post entirely.  It’s just hard to get the feelings out of my head of how it felt to lie in the hospital the night before Gabe was born and worry the entire night of what would happen the next day. I think it will always be with me.

Put on a happy face

That seems to be my problem. I hold in all of my emotions and always have a smile on my face and sound happy all the time. But the problem is I hold it all in for so long and then lose it over something trivial. It’s hard for me though because I was raised to not air your dirty laundry in public. We always had to have a happy face on when others were around and pretend like all was good. I have to say all was good for most of my childhood but when there was a death in the family or my parent’s marital stuff I still had to pretend like all was good in public.  

I feel like it’s a catch 22 in some ways. Either I put on a happy face or I tell the truth. But, most people don’t want to hear it. So once their eyes start to glass over then the happy face comes back on.  Last week someone said “Max doesn’t look sick” and then yesterday someone said “It could be worse”. Would they rather that Max did look sick and that it was worse. Or am I only allowed to be upset by this if Max looked sick or if it was worse?

I know that it could be worse and I know that there are worse things out there. But the day to day of this disease hanging over my head really gets to me. I never get a reprieve from it.  It is always in the back of my head that they will need a kidney transplant but we just don’t know when.

Saturday we leave for NIH (National Institute of Health). This will be our second year there. We are participating in a research study on ARPKD. It gives us a bigger picture of the disease. I know it is good that we are going and we chose to go, but still I am anxious about it.

Murphy’s Law

I often think our life never has a dull moment.  It always feels like something new is happening. Often they are little things but in our life these little things add up.  Recently Gabriel has fallen twice and needed stitches both times. And of course Matt was at work and I was home with the boys.  One of the times Max and Nate had friends over so there were five boys here.  In the scheme of our lives stitches are no big deal but just the same a hassle.  Then last week we got a new car and literally 2 hours after we got it we saw it had a crack on the windshield, most likely from the ride home on the highway from the dealership. And then about 2 hours after that we found a tick embedded in Nate’s head. We will go one day this week to have him tested for lyme.  On top of our daily life with pkd this stuff just adds up. Sometimes I feel slightly overwhelmed with all the details of our life.