Celiac Disease

As far as diseases go it’s very treatable.  But come on… do we need to add one to the list? I really don’t think so. It’s not definite but we saw the GI doctor today and she thinks Gabe might possibly have Celiac. It’s an autoimmune disease that attacks the stomach and intestines and does not allow the body to absorb carbohydrates/gluten. That is an oversimplified definition and what I learned from reading about it from Google U.  She thinks this is a big possibility for Gabe not gaining weight for many reasons. One is that his kidney function is good so it is most likely not related to his ARPKD.  Another is that he does eat a large amount of food and eats a variety of foods. And then there is the family history of autoimmune stuff in our family – hashimoto’s thyroiditis (mom and sis), rheumatoid arthritis (grandma), gout (dad and brother), positive ANA (me and my nephews – although doesn’t necessarily mean anything but an initial blood test for an autoimmune disease)…..  Then there is the amount of times he goes number 2!!  She also thinks if Gabe has Celiac then there is a strong possibility I have it as well. Of course the family history for me of autoimmune but I also have stomach issues (won’t go into details) and then I just found out I have a Vitamin D deficiency which goes along with Celiac.  And then there is my “pregnant” stomach.  People with Celiac have a distended/bloated belly. Last week a nurse asked me how far along I was.  That made my day!!!!!

So of course in the scheme of things and in the scheme of diseases in our lives I’ll take Celiac. But why can’t it just be easy and be nothing??? And then of course if it is indeed Celiac then we cut Gluten out of our diets. Of course I would do anything to help Gabe but really it’s just a pain to cut out Gluten!! And will just add stress to my life. But that’s what my life is all about these days… stress!!!!

Swine….

To get or not to get the H1N1 vaccine. That seems to be the million dollar question these days. And if you ask 10 people you might get 10 different opinions. Our pediatrician and nephrologist are both recommending it at least for Max and Gabe. But where to get them is a whole other story. No one has them right now. And then if they do get them who knows if they will run out before it’s our turn. Ugh. It is just way too frustrating to me. My nephew who lives out of state and did not get either flu vaccine happens to have the H1N1 flu right now.

There was this really interesting story in the NY Times this Sunday about the H1N1 flu and a pandemic occurring in our country. And what would happen with a pandemic and if hospitals ran out of supplies and medications.  So far most of the cases they talk about are mild but then you hear about those people who die from it as well. Just one more thing for my little head to worry about. Because really I don’t have enough to worry about with the kidneys alone.

Someone had the stomach flu at Gabe’s school last week and I freaked out. They threw up all over the place and the brother of that child is in class with Gabe. I think his teachers think I am insane but I told them to keep Gabe as far away from this little boy as possible and I have been purelling like crazy and using lysol too!  I know I am neurotic but would really like to avoid all illnesses. We have enough health issues around here.

Different

We talk a lot about how everyone is different. Everyone has something.  I do this to show the boys that even though their kidneys are “different” everyone is different. I want them to be happy with themselves and to have confidence. But some days it gets me down that they are “different”. I wish they weren’t. Today we had this meeting at our Temple for the fourth grade retreat that is coming up in November. I found out they will be taking school buses to the retreat and it is a 2 hour ride and they will not be stopping at all.  I must have gotten this funny look on my face b/c the director looked at me and asked if that was a problem and then said we would talk afterwards. She is the nicest person so I knew she would work it out with me. But I hate that I have to think about all of these things and that Max has to be singled out. She said it is the bus companies policy to not stop. I am assuming it is a money issue and that is why they are on school buses rather than coach buses. She is actually driving her own car up behind the buses and said Max could ride with her and she would stop for him if need be. She is also going to talk to the bus company and see if they would stop if Max needed them to. I just don’t want Max to worry about it and/or feel singled out.  I know it’s not a big deal and I could always drive him if it came to that. I’ve just been cranky all week anyway and then this just adds to my crankiness. It’s one of those “small” things that could easily push me over the edge. It just makes me feel jealous of my friends who don’t have to worry about every little detail like I do.  And then when I really start thinking about it my heart breaks thinking about how Max must feel when he worries.  And how it must be for him to actually be the one with the medical condition.  I hope I am doing a good job making him feel like it’s no big deal and that everyone has something.

Moody

Max has been really moody lately. He is nine and a half and in fourth grade. Is this just normal boy stuff for this age? Or is it something else.  For that matter Gabe has been pretty moody lately too. He is very whiny and cries at everything. He is three and a half and has always been an “easy” baby/boy!  Is this just normal three year old almost “f-ing” four year old behavior? I wonder about these things and question everything. They have good kidney function so can I equate any of their behaviors to their crappy kidneys even though their crappy kidneys are working okay right now.  The guru in the field is doing a webinar on Tuesday and I saw her powerpoint. One of the slides said something about the fact that kidney function is not necessarily an indication of disease severity. So could this mean that even though my kids have good function as far as numbers go could their kidneys not be working as well as we think they are. And in turn if they are not working as well as we think they are could they be having residual effects of this and could this be making them not feel so great and then be moody! What a long drawn out sentence for how my crazy mind thinks. I worry. I worry about them. Nate is not half as moody as they are. Hmm… I wish there was a magical ball out there that told me why they were moody and what they were feeling. I think Max doesn’t drink enough and then doesn’t realize that he isn’t feeling so great. I think Gabe’s kidneys are really big and he just doesn’t feel great in his tummy. Of course I’m not a doctor and just their worried mom but could I be right?  I hate worrying and then I hate second guessing my feelings. And what I hate more is that they might not be feeling great b/c of their kidneys. And I truly hate their kidneys and this disease.

So close

I was this close to being interviewed today by ABC about having children with chronic kidney disease. It was all very exciting. I was even thinking about what I would wear (b/c you know it’s all about me looking good!). But it didn’t pan out. There is this PR person who has a sister in law with PKD. She is doing the Foundation a favor by trying to book PR opportunities in NYC. The Tri-State PKD Walk is Sunday and they are trying to promote it as well as PKD. Then this week an article came out in the New England Journal of Medicine about children with chronic kidney disease and some blood pressure medication slowing down the progression of the disease. So this PR person approached this medical journalist at an ABC affiliate in they city and it was almost going to happen but then it didn’t.

Just the thought of going on tv to talk about ARPKD is exciting.  I was thinking about all of the babies who have died from ARPKD and all of the kids out there right now who have the disease and how being on tv could really help raise awareness and much needed funds for research. I really, really hope we can get some national coverage on this disease and soon. As I think I mentioned I sent out an email to everyone who was registered as “walking for ARPKD” and in return I received so many emails. And many of them were from moms and dads who have had babies die from the disease. There are so many babies I need to add to my remembrance section. I fear the remembrance section could be as long as a whole newsletter. I don’t fear that it will take over the newsletter for the sake of the newsletter but fear there are just too many names of babies who have died from this disease. That saddens me. Of course there are too many people living with ARPKD as well. I kept thinking about being on tv and talking about how there is no treatment and no cure for ARPKD and that the transplant is not a cure….Maybe someday……

a call and an email

I received an email yesterday from a mom with a 2 month old with ARPKD. And tonight I received a phone call from a pregnant woman whose baby has a possible “PKD” diagnosis.  Two in one week.  The mom with the 2 month sounded so much like Gabe’s story it brought back so many memories.

It makes me feel so good to receive these calls and emails and to be helpful for these people. It can be so lonely to have this diagnosis. But it also makes me so sad. So sad that there is not a cure yet and people are still in this position that they need help and information.  I am so thankful the foundation is here for us and that when I was in that position I could reach out to others and that now people can reach out to me. But what about all of those women who are pregnant and don’t know about the foundation and are never able to find us for support? I feel so sorry for them. Like I said it can such a lonely diagnosis, especially when your doctor doesn’t know a lot about it and isn’t giving you the right information.

Over the edge

I often say how I hold it all in and then one little thing pushes me over the edge. Well I think I’ve been holding a lot in lately and today I was pushed over the edge and completely lost it! I called my doctor to schedule my flu shot and was told they are out of them, already! Someone suggested CVS so I found out they were giving them at the one near my house from 10-2 today. So I dropped Gabe at school, went to the gym, went to the supermarket, and then got to the CVS at 11:30. And the line was long, really long!  I waited and waited and waited for one hour. Then I get to the front of that line…. there was still another line after you filled out your paperwork to actually get your shot.  At the end of the first line I told the lady I had Aetna but did not have my card with me. I realized this morning my insurance card was not in my wallet for some unknown reason. The lady said it was policy to have the card even though I had all of the information!  So I said I would just pay for it and she said 30 dollars in cash. And I’m sure you know what is next, but I only had about 15 on me. Ugh! I lost it. I burst into tears and couldn’t stop crying. Of course I was pissed off about wasting an hour of my time on my one free day without work or the boys but beyond that I am just emotional about my whole life with the main thing being the boys. It’s just one of those “I’m feeling sorry for myself” kind of days. I’ll get over it and move on but I feel so drained! And CVS sucks. And the lady was so unsympathetic that it really didn’t help the situation!

91

Matt’s grandma turned 91 today. Wow! We took the boys there for dinner tonight and brought in chinese food. She loves chinese food. And she loved seeing the boys. And amazingly she lives on her own and looks amazing for a 91 year old woman who ironically only has one kidney!!  (not at all related to the boys’ PKD).  It was nice seeing her and I’m glad we could help her celebrate her birthday. And I’m glad we took the boys over there.  Gabe had so much fun talking to her, it was really sweet.  And she still has her funny sense of humor. She likes to make fun of Matt and tease the boys, which is so fun to see.

So…. Happy Birthday, Grandma V.

ARPKD Angels

I have become “friends” with some moms on Facebook who have all lost a baby to ARPKD. I have tried to connect them all together so they can support one another. They have now started an “ARPKD Angels” group on Facebook to remember their babies. They amaze me. These women who have all lost babies to ARPKD and are all willing to share their stories and all want to support one another and receive support. Perfect strangers that were all brought together by ARPKD.

One of the moms in the group wrote a really nice note about how J, K, and I helped her have hope while she was pregnant even though her baby died and how we were her angels. And this really touched me. I cannot even put in words how this touched me and made me feel that I am making a difference. I am doing something with this diagnosis. I may not be finding a treatment or cure for my boys but I am doing something. And it helps me to know this.

The Connector

Julia calls me the connector. She says I have some sort of connection with so many people. It’s funny how it works. Matt and I have so many connections, it’s freaky sometimes. I might have blogged about this before but can’t remember. But we met b/c my sister was his brother’s speech therapist. But then we found out that he dated someone in college in Arizona who is the sister of someone I went to college with in Texas. And then we found out a friend of his from growing up went to law school at Stanford with my distant cousin. All weird connections. Last night at temple this woman came up to me whose son goes to the nursery school. We took a parenting class together but don’t know each other that well. It turns out she went to Albany and dated a friend of Matt’s brothers. She was at a U2 concert last week with a bunch of New Rochelle people and someone was talking about one of them living in White Plains near the Karls and this woman from our temple asked if they were talking about me. Such a weird connection. And then there is the pediatric nephrologist who works with the “guru” in the field who I went to college with!

So the purpose of this blog was not necessarily to talk about Matt and my connections but just connections in general. I actually like connecting with people. Something about it makes me feel really good. So a couple of weeks ago I decided to email everyone listed as “walking for ARPKD” through the 2009 Walk for PKD through the Foundation. I wanted to introduce myself and tell them about the ARPKD chapter and how we really want to support everyone as much as possible. And the responses have been overwhelming. So many people have emailed back and shared their stories.  Good stories and some really sad ones too. But hopefully by sharing them they will now be connected with me and Julia and the Foundation and will receive the support they might need. So even though my dad said I should “take a vacation” from PKD I just can’t do that but am honestly happy that I didn’t take a vacation and instead sent out this email and have maybe given someone some hope that they didn’t have the week before surrounding this disease.