Always in the back of my head I think of all of the terrible things that can happen in life especially with my boys with ARPKD. But I try very hard not to think of them very often. Sadly a nine year old with ARPKD passed away about a month ago. He was the first child with ARPKD I met who had already had a transplant. I met him and his mom at my first PKDF convention in DC when Gabe was three months old. His name was Eric and he had a rough start. He barely made it at birth and then had his kidneys removed. He was on dialysis until he received a kidney from his aunt shortly before he turned two. He was then fairly “healthy” as far as his kidney went but had some emotional and behavioral issues. His mom Beth is an amazing mom and was on top of everything! She knew a lot about ARPKD and was always so willing to talk to other families about what she had been through. I saw Beth again in April here in NY when we had our PKD in Children Conference. We talked a lot and spent some time together. She had a lot to offer during the conference. Shortly after that Eric became ill and the first thought was that he needed a liver because his CHF had progressed. That then turned into a diagnosis of PTLD, which is a rare type of lymphoma that some people get after having a transplant because of being so immunosuppressed. Eric’s little body could not handle the chemo and he was no longer a candidate for a new liver. He was taken home to be cared for by hospice in September and passed away shortly after.
I cannot even imagine the pain of losing a child. As I have said before I am not religious enough to believe in an afterlife and often wish I were to help me deal with death. But I think even then it would be very hard to believe in G-d and an afterlife after losing a child. I stopped watching tv and reading the news a while ago because it was very depressing to me. Anytime a child dies is so sad. But this touched a nerve. I had met Eric, had talked to Beth over the years, and obviously the big one… He had ARPKD like Max and Gabe. It makes it all that much more real when something this sad happens.
I think of Eric and Beth often and hope she is healing as best as she can.
when life is crazy :)
I cannot believe I have not posted since April!! That is just crazy. There is way to much to talk about and post here…. I will make a list of the pros and cons of the last 3 months:
1. I haven’t been feeling great.. no one can figure it out. I had to have a CT scan, PET scan, echocardiogram, lots and lots of blood work……Most likely it is my thyroid.
2. Our medical bills are out of control! We have already used up our $3000 in our flex account. Earliest in the year ever!
3. One of Gabe’s medicines has gone up in price and is now $222 for three months. It is the only medicine the dr wants to prescribe and does not have a generic.
4. Gabe isn’t loving his daily injection. (see #2 below)
5. Received a very nasty email today that was almost like being bullied. But my friend Julia says I need to remember “It is none of my business what people think of me”. That’s hard to do all of the time.
1. Max had a beautiful, amazing, and perfect Bar Mitzvah in May
2. Max and Nate are having a blast at sleep away camp.
3. Gabe started growth hormone!!!!! (just not sure it has actually started working or if it will…. will find out on 9/4)
4. I had a very successful fundraiser at the Alex and Ani store this week to benefit the PKD Foundation. (alexandani.com)
5. We are taking a family vacation with my parents, siblings, nephews, and niece to Jamaica (hopefully this will stay on the pro list!).
6. The summer has been very relaxing for me and Gabe and I have spent a lot of quality time together.
It’s nice that at the moment the pros outweigh the cons in this post. I need to be a better blogger!
Still waiting for the growth hormone. We have an appointment with the endocrinologist on 5/8 and he hinted we might start growth hormone at that point. I’ll believe it when I see it. The problem is that Gabe produces a ton of growth hormone but is not absorbing it which is a completely different story. What’s frustrating is they do not know why this is happening and do not feel it is related to the ARPKD!! What else is frustrating is the comments I am hearing about how cute and small he is and what a peanut he is. Yesterday a woman said he was such a peanut and I turned to her and said that is because he has a kidney disease and isn’t growing. That still didn’t faze her and she said her youngest is a peanut as well and the doctors wanted to do growth hormone on her son but they decided not to. They actually got approved and tried it but her son didn’t like it and didn’t care so they stopped! Argh!!! How long have we been trying to get growth hormone and got denied once and are still hoping!!! She even said we still had time. So I said that we might not since he could go into kidney failure one day and that would stop his growth immediately. She still just kind of smiled at me and didn’t really say much. I think most people just don’t get it. They look at him and even though he is small think he looks good and is so cute so don’t realize the severity of all of this. She made a comment that her brother in law was only 5’5″ and that was fine. And maybe it was. But who knows how tall the boys will be and when you add in all of the extra medical issues I just don’t want to miss the boat on this one!
Things have been crazy for the last six months. My sister had a stroke in November because of a tear in her carotid artery. She possibly has a connective tissue disease but they are still trying to figure that out. Then Gabe had his growth hormone stimulation test and threw up for three hours straight and it turns out he makes plenty of growth hormone but isn’t processing it. But they have no idea why!!!!! And he still is not on growth hormones. As far as Max goes he’s been having a ton of stomach issues and might need an endoscopy. The meds are not working to help him. And the pulmonologist thinks his asthma is acting up and wants to rule out vasculitis.
The icing on the cake is that I have/had thyroid cancer. I say had because I had my whole thyroid removed three weeks ago. They think they got it all but I will find out more next week.
Way too much going on in my life!!!!!!!
Today was the first time in my 8 year career of being a mom to kids in school that I forgot to send a lunch in for a field trip. Embarrassing and sad. Nate came home and said it was a bad day for two reasons. One he didn’t feel well and two he had a field trip and no lunch! Obviously the school provided one but I’m not one of those moms who forgets things like that.
It made me really sad. I’ve often thought over the last seven years since the ARPKD diagnosis that I’m not the mom I thought I would be. I’m not as happy and carefree as I would like. The last four months have really thrown me for a loop. Extra appointments for the boys, my sister having some health problems, and last week having my thyroid removed with a cancer diagnosis (hopefully contained). Just too much to process. As my friend Julia says “I cannot compute” and I’m a hot mess!
Here is our list of doctors (mostly ologists) that the boys have seen this year:
Urologist (talked to on the phone)
Gastroenterologist (also talked to on the phone)
Rheumatologist (going to on Friday)
Orthopedist (one of the few ists without an olog in front that we see)
Hepatologist (going to in a few weeks)
We have been to the endocrinologist three times this year alone between Max and Gabe and the nephrologist also three times. If you add in my ophthalmologist, endocrinologist, neurologist, rheumatologist, and thyroid surgeon then we have been to a total of 15 doctors appointments and had two consultations in 2013. Wow!!!!! And I already know of at least 8 appointments coming up in the next six weeks or so plus two abdominal ultrasounds, one bone age X-ray, and one chest X-ray. No wonder I am overwhelmed!!! I need a secretary. Our nephrologist said they should name a wing after us at the hospital!! He isn’t kidding. That’s $600 of copays alone!!!!!!!!!! And its only the third day of March.
I know I have said this before and I know I will continue to stress about this but for the last three years or so I have complained that I felt Gabe wasn’t growing like he should be. He eats well but barely gains weight and grows height wise at a very slow rate. We are now onto our fourth endocrinologist who we have been seeing now for almost a year. We saw him today after 3 months and he asked if I thought Gabe had grown any and I said no. So after measuring him and weighing him he agreed that Gabe has not grown since our last appointment and has now totally dropped off of the charts in both height and weight. But yet he still does not want to start growth hormone. He wants us to wait until our appointment on 2/25 to do the 3 hour growth hormone stimulating test. Then he wants to wait for 2 more weeks for me to call him and to discuss those results. Then we will go from there. But even if he does decide at that point who knows how long it will take him to apply to our insurance company and for our insurance company to approve it. I am beyond frustrated at this point and do not know where to go from here. The thing that irritates me is I know so many people who have their child on growth hormone for other reasons but did not have to fight like this. I also know many people with children with a kidney disease who have or had their child on growth hormone and also didn’t need to jump through hoops like this. What’s even more frustrating is that Gabe is 7 and still wears some size 4 clothes and weighs 37 lbs!!! And is only 42 inches. This is I think more than negative 2 on the growth chart!!!!! He is 52% below the “average” 7 year old!!!!!! That is just insane to me.
Besides that the endocrinologist seems to now be more concerned about Max and his growth issues so I need to do some follow up with him. And we have already been down to the city for 5 appointments since the beginning of the year and need to go in a few weeks for a sonogram for both boys and for Gabe’s 3 hour growth hormone stim test. Besides that the nephrologist wants me to take Max to a pulmonologist and Gabe needs to see an ENT. And I need to follow up with the hematologist for Gabe and the GI for Max! And I’m having half my thyroid removed in March!!! And we have already spent $1000 on medication this year and over $300 on copays!!!! That isn’t even including our deductibles!!! Wow and its only the fifth of February!