Monday, July 18, 2016

Clinic update

Jacob is still doing well. He is spilling a bit more protein than he usually does but so far the doc isnt concerned. He has to do a early morning urine sample and take it to a local lab to make sure he is still doing well. We are horrible about this and have yet to complete it. Another thing Jacob needs to do is start to order and pick up his own medication. Since he will be 18 this month, the doc wants him to start managing his own health care. So far he will be continuing with her, the pediatric nephologist, but in time he will transfer to an adult one. When he does, he needs to be caring for his own things like making his own appointments, ordering and picking up his own meds, basically no help from mom. He can do it most already, he just has not had to since I did it, now mom needs to hand the reins over to him and let him take charge!

His medications have stayed the same so that is good.

Sunday, January 3, 2016

No news is good news!

10 months!!

It has been about 10 months since the last post. It is true that no news it good news. Jacob is still in remission!

He has a new doctor as his previous one retired. She is the one that did his biopsy. I really like her.

So, the only difference with Jacob is that he had a little medication change. His blood pressure is sodium sensitive, meaning that when he eats lots of salt his blood pressure goes up.  A small dose of a water pill was added. He is now on lisinopril/hctz, or Zestoril as it may be called.

He is also involved with a national study. I forget all the details right now, but I do remember that it tracks him throughout his life to see how he is doing.  It is called CureGN study. Here is a link for more info!

Next appointment is sometime this late spring/early summer!

On a side note, Jacob is finished with high school!  He took enough classes and finished a semester early!  He will start his first semester of college this week!!

Thursday, March 12, 2015

Long overdue update

Wow!  I cannot believe it has been over a year since I updated this blog!  Much has happened in Jacob's life! Let's see where to start.

So last update was December 2013.  Umm...no real changes until the summer of 2014.  I will do a timeline of what's been going on health wise. The family has been so busy that really this is all I have time for is the health update right now.  I will give a more personal update later on...probably in May when I graduate with my master's degree!

Ok, so summer of 2014.  At the beginning of July, Jacob developed knee pain and abdominal pain. About 2 weeks afterwards he then developed a rash of sorts over his legs and some on his trunk and arms.  After much investigating online, I thought he was HSP (Henoch Schonlein purpura).  I made an appointment with his nephrologist and the diagnosis was confirmed. The whole episode lasted a month. We just monitored his blood pressure a little closer but no new meds were started.

In late summer, he began getting a little more irritable, more anxious, and complained of not being able to focus as much. His grades had begun to slip since starting high school and he actually was considered failing 10th grade. The debate I had was to start a stimulant for the focus and hope it helped the anxiety and irritability or start an antidepressant for the anxiety and hope it helps the focus issues. After much debate, we started him on a stimulant for ADD.  I was afraid it would increase his BP too much but we went ahead with it anyway.  Well, needless to say, it has worked wonderfully. His anxiety has decreased much and he went from getting Cs, Ds, and Fs with the 4 classes he was taking to As, Bs, Cs while taking 4 classes, plus an online class (to get him to his junior year), and marching band!  Wow...I wish I would have put him on it at the beginning of high school. 

He had his 6 month visit in December and we were told that his nephrologist was retiring. Boohoo! We will miss him! We have met the new doc before. She did his biopsy and was great! Good news is that he was still in remission. His BP did creep up a little but the doc wasnt too worried.

So now it is March. He continues to get good grades. He wants to start working a part time job. He has his drivers license. He is a little overweight and his BP is running 130s/70s which is a little higher than I would like to see.  I do think it is due to several reasons. One is the stimulant for ADD. Another reason is that since I am in grad school, our diet has not been the greatest. More fast food and processed food than I care to admit.  His sodium intake is probably way too much.  He recently decided that he is going to get healthy and is doing better than anyone in the family right now!  He says his urine is looking "the same". He has been complaining of abdominal pain off and on and thinks he has developed an intolerance to lactose, or at least milk.  He can eat cheese okay. He has switched over to almond milk and his abdominal pains have subsided.  Also, he developed the HSP rash again, but only on one foot.  No joint pain. The rash was in February. It lasted a little over a week and began to fade but then came back for another week.  Oh and at his eye appointment in late February his ocular pressure was 28 (normal is usually up to 21).  He went back 2 weeks later and it was down to 21.  We think this is because of the increase in BP.  I have changed his appointment from June to April and will be bringing this up.  We are monitoring his BP closer.  Also I am hoping his newly adopted healthier eating will help.  

So that is it.  The long update.  I will do my best to update a little more frequently than every 15 months!

Tuesday, December 10, 2013

It has been awhile, but we are still blessed!

I cannot believe I never updated Jacob's last appointment!  Well, he was still in remission and all was really good. No labs were drawn. The only thing the doctor mentioned was that he needed to watch his weight.

Today's visit went just as well, if not even better!  According to the doctor, "All labs look great!"  We are so blessed!  When we were at the appointment, his blood pressure was normal, the urine looked almost as good as one without kidney disease.  He did gain some more weight though.  Some of it may be due to the heavier clothes, but most of it is because the kid just is not active enough.  He is not a typical teenage boy.  He does NOT eat me out of house and home. He really does not eat much junk food. He does not have a sweet tooth.  He just does not move.  He plays video games.  The doctor and I devised a plan where he will be paid to be active.  For so many hours of activity, he can get a new game.  All the details have not been worked out but in theory, it sounds like a great idea.  Jacob even thought it was a good idea.  Now he is not horribly huge, he just has a little extra weight and the doctor really wants him to maintain an ideal weight, for his kidney's sake.

Considering this is the only issue the doctor had, we are very happy! 

Thursday, April 18, 2013

BP is down some!

We went back on the lower sodium diet and guess what?!? His blood pressure has gone down.  125/66 was the last reading. This is a step in the right direction!  Now, if I can just get the 125 down some more, I will be a happy camper!  He has splurged again the last few days so hopefully his BP hasn't gone back up. 

So, there is the proof! A low sodium diet can make all the difference!

Thursday, April 4, 2013

Creeping higher

Jacob's blood pressure is creeping higher and higher.  We are so bummed.  Jacob is downright mad.  He actually began arguing with me that "the machine read 'fair' so it isn't bad".  Sorry buddy, but it is.

We noticed it about six weeks ago.  We spot checked it and it was 122/80.  Not bad, but higher than what the doctor wants it, which is 110-120/60-70.

Two weeks after that spot check, we tried it again. 130/88.  Jacob admitted he had forgotten to take his lisinopril the night before.  Ok, so it probably means he will not be coming off that med when we see the doctor in May. Bummer.

Two nights ago.  Another spot check.  133/90.  He has been taking his meds faithfully.  What he (and the rest of us) have not been doing is adhering to a low sodium diet.  Not at all.  Well, that is not totally true. We are still using our low sodium ketchup.

Sigh. Big sigh.

Back to the low sodium diet. Actually it is more "back to cooking".  This semester in grad school has got me slacking.  It isn't even overwhelming. I think I made it to be.  Gotta get organized to get this nonsense under control!

I also should probably call the doctor today to let him know.  Jacob has no other symptoms though. No edema, no pain anywhere, and he says his urine looks the same.

I think we got too comfortable and the disease is peeking out telling us it is still there, even if undercover right now.  ARGH!

Sunday, November 25, 2012

November 6th clinic apt.

The remission continues!  I noticed that the posts come less frequently, but that is a good thing!  At Jacob's clinic appointment, the doctor told us that Jacob is doing even better than before!  He has even less protein and RBCs in his urine.  He debated on taking him off of the Lisinopril completely, but opted to cut the dose in half instead.  We do not have to go back for another 6 months now!!

During the three months that we had in between appointments, Jacob did have two colds.  The doctor asked all sorts of questions about how he felt during those colds and was happy to hear that they did not trigger the disease to act up!  No flank pain, the urine did not discolor, no major headaches. All was good during them.  I made sure to really be on the lookout for any signs that he was coming out of remission.

So that is it.  Not much to report.  Overall, I feel this blog will not be updated as often, but one never knows.  I may post once in awhile just to keep track of how Jacob is doing.  We shall see.

Until next time....