Fun

Mackenzie, like all of her siblings, has suffered loss in her life. She lost her father when she was 4 and has grown up with a large, extended family network. One of our family members mentioned to me the importance of “making memories”. This has always been a goal of our life. Because I have 5 kids, getting time alone with each child is sometimes challenging. One day, when Mackenzie needed a pair of jeans, we head to the mall, just the two of us. Usual chaos of shopping in store with loud music and really strong fragrances for me. For her a chance to find the items on the clearance rack that I would find a “good deal”. We were successful and she left the mall happy. We exit the mall in a big hurry to get home in time for dinner prep. Guess what! It is now pouring rain. We are going to have to make a run for it. We run, jump puddles, get wet, lose our car and finally make it to the van. We get in the van and access how wet we are. We look at our bags to see what kind of mess we have there. At that moment Mackenzie says “That was fun!”

Chasing Protein

Mackenzie has an appointment with her nephrologists every 4 months. For her it is just an appointment and nothing more. For me, it is a full week of worrying about the protein. Will it be the same, will it be increased, will she need to start medications? The doctor has given us a protein level that would warrant starting her on medicine. We are usually below that number, but many times hug precariously close to the level. Starting medication is really no big deal. ACE inhibitors or ARBs are drugs usually for blood pressure, but when given to IgA patients can help decrease proteinuria. In my head, the longer we can go without needing medication, the better chance we have of not progressing to end-stage renal disease. This is my issue and has no basis in reality. How long can I deny that at some point in her life, we will need to face kidney disease head on.

The Travel Form

I hate the travel form. As an 8th grader, Mackenzie gets to go on a 3 day trip to Washington. They have to fill out the travel form outlining insurance and medical information. Mackenzie is very healthy and only takes Vitamin E for her IgA Nephropathy. On one hand, we hate to put the kidney disease information on her form, because the teachers and nurses panic about what it means, what limitations she has, etc. On the other hand, if Mackenzie is ever involved in an accident and is treated at the hospital, they would need to know her medical history to treat her effectively. We filled out the form with all information asked. I am a huge advocate of open communication and public advocacy. My daughter on the other hand just wants to go to Washington without being considered “sick”. We tried something different this time. I had Mackenzie send the chaperones an email explaining IgA nephropathy, her health status and what it means. She took charge. She answered the questions. On the last email I saw, the teacher was asking her if she had any dietary restrictions. Her response was “No, not at this point, but I am addicted to pasta. But, that’s another story.” I am so proud of her. She is meeting this head on and taking charge of what she needs.

She Doesn’t Understand

At her first visit with her nephrologists, he spent a lot of time speaking directly to her. He drew her a nephron and explained about the filters. One thing that Mackenzie and I have in common is a stoic personality. We don’t show a lot of emotion. She listened and said she understood, but had no questions. At the end of the appointment, the doctor looked directly at her and told her not to worry. He told her that he will be running some tests and he will help figure out what she needs to do to be healthy. He explained to us the natural course and variability for IgA Nephropathy. I came away with the worse case scenario and Mackenzie heard the “don’t worry” part. I tried speaking to her several times that week to ask if she had any questions or anything she wanted to discuss. She cheerfully said no. I was concerned that she did not understand it all. Since she does keep her feelings close to her chest, should I try and get her to express them? A good friend gave me a piece of advice. “She’s got a lifetime to figure this out. Give her time” I took the advice and we spoke of scheduling biopsies, follow-up appointments, but never spoke of chronic kidney disease. My friend was right. It was only a week and during a walk, the questions started coming. I need to always respect her timing. I let her decide how we handle and what we discuss.

Did We Mess Up?

Mackenzie first had blood in her urine at her 12 year old physical. We were first referred to a pediatric urologist and she had a lot of tests done that were all normal. The urologist told us not to worry. It wasn’t until a year later, at her next physical, that we asked the doctor about it. They repeated her urine sample and it was worse. Also, she had protein in her urine. The pediatrician now recommended we see a pediatric nephrologist. When we were facing the diagnosis of CKD, I had a lot of very clinical questions. My husband was listening and taking notes. When I took a break, the doctor asked if we had any more questions and my husband asked “Did we mess up? Is this something we may have missed because she skipped several years of physicals? Or is this something that could have a better outcome if we had pressed harder last year?” The doctor explained that early diagnosis is extremely important, and that based on all of Mackenzie’s labs, we had caught her early. When our pediatrician reviewed the paperwork, she called us to talk. He asked her the same question. Her reply was how grateful she was that we caught it at all. Many people are not diagnosed until they have symptoms and have already lost kidney function. She ordered the urinalysis, we reminded her the following year to do a repeat and we were quick to see the nephrologists. I think it is normal to question yourself, but getting over the doubt quickly is also important.

It’s So Simple

When your kids are babies, you are always aware of the well baby visits, yearly physicals, and immunizations. When they get older, sometimes things slip. With 5 kids, we didn’t really have a yearly physical plan, just taking them in when camp forms or schools physicals were due. When Mackenzie brought home the school physical form for cheerleading tryouts, we thought – no big deal. We called the doctor to see when her last physical was. Wow, in the 5 years that we have lived here, she has never had a physical. Lots of sick visits, but no physical. They were able to work her in quickly and in we go. Since we hadn’t asked for her previous records, they were starting from scratch. Our pediatrician was great. “Don’t worry, we will just do a quick check on everything.” She did the usual and as an extra precaution, she drew blood and did a urinalysis. Forms were filled out, we said thank you, and she made the team. A couple of days later, they called back. They found microscopic blood in her urine. Could she come in for a repeat test. We had a discussion on technique and then we did a repeat. The second came back the same. It would be a while before we knew that there was really something wrong, but I have thought about that day often. Screening urine in kids is not usual. Many pediatricians may do it once in childhood, but not routinely. Guidelines don’t disagree. None of my other kids who had regular physicals were ever screened. Because Mackenzie was the one lost in the shuffle, she was screened. Because of the urine sample, her disease was caught. As much as I wish she did not have IgA nephropathy, I am so grateful that she was diagnosed young. The test that changed it all – a simple urine sample. Not hard, not invasive – just so simple. I have spoken to so many family and friends – ask for a urinalysis. If you can’t remember if your child has had one, just ask.

You Decide

Normally, I like to be in charge. But this time I really don’t want to be. The doctor explained to us that the only way to get a true diagnosis is by renal biopsy. He also explained that we will need to do one at some point, but based on her labs, we don’t have to do it now. He told me of another patient of his that came to him with more signs of active disease where he recommended biopsy the same week. We are so fortunate that this is not the case for Mackenzie. Since the biopsy was not urgent, her doctor scheduled a follow-up appointment a month later to discuss. This would give us the opportunity to think through our questions and not feel pressured. During this appointment her doctor was so patient with us and explained each benefit and each risk with painstaking details. He answered every question we had and never once pushed us to do a biopsy before we were ready. I don’t want to go into the details of why we decided to have the biopsy. For others that are faced with the decision, they should work closely with their doctor to come up with their own decision. I just remember the feelings of wanting to make sure I made the right decision for Mackenzie. What I can say that worked for me was asking a lot of questions, and then taking the time I needed.

Searching for Answers

Well, I have to admit that I did it again today.  From time to time, I decide to begin researching IgA nephropathy on the internet to see what else I can learn.  I will admit I have a love-hate relationship with the internet.  My job requires me to spend a lot of time researching on the internet.  While I appreciate the amount of knowledge that is so readily available, I am alarmed at how many hours I can spend staring at a screen looking for something more.  When the doctor first told us that Mackenzie had a form of chronic kidney disease, most likely IgA nephropathy, he explained that it would take additional testing before we could be sure.  As if reading my mind, he immediately told me to go to the National Kidney Foundation website if I wanted more information.  He then suggested that  I not search the thousands of other websites that were at my disposal.  It was obvious he didn’t know me very well… or maybe he did.  He told me that there is a lot of great information out there and also a lot of information that would not be helpful to me right now.  I read through the NKF site first.  And then without a moment’s hesitation began searching everything else.  Like most parents, I was looking for answers that I knew couldn’t be answered.  What would happen to her?  Would she develop kidney failure?  What caused this?  What could we do?  Immediately I was immersed in genetic variants, transplant statistics, prognostic indicators and thousands of other things that made no sense to me.  Her doctor was right.  I was now overwhelmed and still had no answers.  I need to be an educated parent – that is just my nature, but I have to be comfortable with the unknown as well.  I still search for information and read other’s stories, but at the end of the day I have to balance it with everything else.  Today I read that similar to adults, 25% of children with IgA will develop renal failure in 20 years.  What do I do with that tidbit?  Should I worry?  Should it give me hope?  I am not quite sure.   I think I’ll just store that away and think about it later.