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....

Wednesday, September 19, 2012

Is his glass half full?

My husband and I were just discussing that Jacob has changed since entering high school.  Not for the worse, mind you, but he just has different likes now.

For instance, he has NEVER enjoyed gym class. NEVER. Now....he LOVES it. He cannot wait until the two weeks of health class ends so he can be in gym for two weeks.  Strange.  He also has expressed an interest in learning to play tennis.  Again, strange for Jacob.

He rides a bike.  He used to ride a bike when he was younger, but since moving south, he rarely rode one.  We would try to get him to go for a bike ride but he would come up with reasons not to. This year, he rides it around the block just to ride and he also mentioned riding it to school once.

He socializes.  This a big one.  He had a few buddies that he would occasionally talk to, but rarely hung out with them.  Now our home isnt overflowing with kids, but he is mentioning more friends. He requested and actually went to a lock-in at the local video game lounge the other Friday.  He even rides his bike to a kid's house on the street behind us. 

Now for some, these are not major things, but for Jacob it is really is a major change.  Jacob is what I like to call, a grumpy old man in a 14 yr old body.  He is Eeyore from Winnie the Pooh.  Jacob's glass was always half empty. He finds the negative in everything.  He is my anxious kid.  He has been like this even before the diagnosis.

For many, high school is a horrible part of their life that they would rather forget about.  So far for Jacob, it seems like it is a positive thing that has come into his life.  He is not totally a positive kid now, but he seems much much happier since starting high school. We hope this new mindset continues.

Wednesday, August 29, 2012

We have a highschooler!

Jacob is halfway through his first week as a freshman.  Hard to believe my "baby" is in high school.  He has it pretty easy this year as his classes are relatively close to one another.  Also, his big sister is a senior and will soon be driving him to and from school.  Right now we drive him to school and his sister's friend takes them both home.  Their last class for the day are right next to each other so it makes it easy to meet up after school.

So far he is liking school.  We debated on notifying the teachers about the kidney disease.  We decided that if there was a place on the various forms the teachers send home that had a "tell us about your child" section, we would notify.  So far 2 of his classes had that so now they know.  One thing I was afraid of was that he would get special treatment for it. This is something we did not want.  We want him to be treated as any of the other students.  One teacher did not respond back...good.  The other teacher..."I'm so sorry he is going through this".  Not too bad of a response.

He also joined a recreation soccer team.  This is the first time he has played since being diagnosed. He was pretty nervous about going, but seems to be having fun.  It seemed like every time he would join a team by the end of the season he was sick.  I think he was a bit nervous it would happen this time.  I reassured him that we would keep tabs on how he was feeling and if he started to feel like he was getting sick then he would slow down.  We also are making sure he is getting plenty of water to drink during the practices, instead of the large amounts of gatorade he used to drink.  I think he will be fine.

Overall, not too bad of a start to the new school year!


Sunday, August 12, 2012

Jacob's August 7th, 2012 clinic update

Jacob continues to be in remission!  The doctor actually came into the room after examining the urine and was almost giddy to tell Jacob that the urine is the best it has ever looked. The protein and red blood cell levels are really low (do not remember numbers).  He was so happy with the results that he did not even order bloodwork this visit.  Jacob was thrilled.  I was able to read his progress note the next day and the plan is that if Jacob continues on the path that he is on the next step will be to reduce or possibly discontinue the blood pressure medication!  Then the only meds he will be on is a multivitamin and the fish oil and neither are prescribed by the doctor!  Oh we are so happy for him! 

To think that about nine months ago, we had no clue what we were dealing with: dialysis, transplant list, etc. and now we are almost pre-kidney disease status!  Praise the Lord! 

Our next clinic visit is in November so we shall be praying he continues on the road he is on!

Sunday, July 29, 2012

All is well!

Jacob is still doing well!  He is on a growth spurt right now and I think he has grown about 2-3 inches this summer so far!  We are excited for the response he gets at the clinic when they check his height!  He towers over me now!

Next clinic appointment is set for August 7th!  Keeping fingers, toes, and eyes crossed and most of all prayers to the good Lord above that Jacob is still in remission!!

Monday, June 4, 2012

...and the remission keeps rolling!

Last Tuesday Jacob had his clinic appointment and it was a GREAT one!

At home, Jacob has been doing well.  No swelling, no headaches, and rarely any abdominal/flank pain.  He has now been off the cellcept for about 5 weeks so this was the time I was nervous for him.  Would he stay in remission?  Would he relapse and have to begin the whole process over again?  I must admit, we had not been as strict with his diet as we had been.  There have been days where his sodium level reached the allowable 3000mg and possibly even went over that mark.  I kept praying he would stay in remission.

So, we arrived at his clinic appointment and handed over his urine sample.  Although it was concentrated from being in school all day and not taking in enough fluids, it did not have that tan shade it used to have.  I was hopeful.  Jacob was called back and his BP looked good, 126/71, I believe.  The only bad thing was that he gained about 5-6 pounds, and it was not fluid gain.  I guess we need to watch his diet a little closer  ;)  

The doctor comes in and has the usual joking banter with Jacob....which means he jokes and Jacob gives him the typical teenage glare.  The doctor and I find it extremely funny.  Questions were asked, "How are you feeling?" "Any swelling?" Etc...  He left the room examine the urine under the microscope.  The expression on his face when he re-entered the room was priceless.  It was only for a split second, but I saw it.  The look was genuine surprise.  He walked in the room with this expression and simply said, "I am pleasantly surprised. I never expected Jacob to be doing as well as he is." 

This sentence says it all.  This answered the questions I had in the past.  I would ask, "What do you believe is Jacob's prognosis?"  I knew he could not predict the future, but I figured he could at least give an idea, based on other cases, how the disease would progress or halt.  He never gave answers, I am assuming, because it usually does not look good.  Well, Jacob has surprised him! 

So, we now do not have to return for three months.  I asked and was given permission to take him off the Zocor.  So he is now officially only on the Lisinopril.  Yay! We also give him multivitamin and fish oil.

All of this to say, prayers do work!  I truly believe that God is the reason for his remission.  God gave us the knowledge and intelligence to lower his sodium intake. God provided the medications to help the symptoms. It was all God and we thank Him for this miracle!

Saturday, April 21, 2012

We have remission!!!

Jacob went for another clinic appointment this past Tuesday. We have a routine, him and I. I pick him up from school, he grabs a snack, pees in the cup, and away we go. He would never make it the hour drive without peeing so we grab the sample while at home. I have to laugh remembering what I told Jacob this past Tuesday when he brought out the bottle of pee. "wow, Jacob, pee never looked so good" LOL! You see, normally his pee has a tan tinge to it. This time, it looked normal! I was praying that the look would mean wonderful news. We get to the clinic and the doctor is extremely impressed with how Jacob is doing mood wise. Jacob is laughing and smiling at all the corny jokes the doctor tells. Normally Jacob gives no response. The doc said the urine looked better and gave us instructions to halve his blood pressure meds and to finish off what cellcept he has and not to refill the bottle. YAY! In addition, no labwork was needed and we get to wait until the end of May before we return. Tuesday night while at work, I checked the lab report for the urine and it showed a trace of protein and 2+ blood. I was a little devestated because I was really hoping for the urine to be perfect. I looked for the doctor's note, but he had not entered it yet. I checked for the note on Wednesday night while at work. The note was there. I opened it and saw the words...."clinically in remission"! Oh I was so happy I about cried right there at work! I texted my husband, who was already asleep an waited until morning and texted Jacob. This is the best news! 5.5 mos from the diagnosis and we are in remission! Thank God for this! We have decided to let him splurge a bit this week and starting next week, we are back on the sodium restrictions (although he is allowed 3000mg now and normally doesnt even come close to that amount). We also have been lax on the processed foods with my busy schedule of work and school. Starting Monday, back to the natural whole foods diet. What an awesome week he has had!

Sunday, March 18, 2012

a vacation for Jacob

Oh he is excited about this one...although his 13 year old self doesnt show it, but I know he is.  His poppo and grammy have booked him a flight to visit them for about 5 days of his spring break.  He will be flying all alone (luckily it is a direct flight and less than 2 hrs) and will get to be away from us.  (I think he is more excited to do something on his own without his sisters doing it...its rough being the baby!) 

Here is how the conversation went one day.
Mom: Jacob, poppo found you a flight. You wanna go visit them?
Jacob: Heck yeah.  No offense, but I want to get away from you guys for awhile.
Mom: ::mouth drops and is left speechless::

What a stinker that boy is!  How dare he say he wants to be away from his momma! 

A punishment?

About a week ago, I was talking about going to church and asked Jacob if he would go with me.  He told me no.  I then mentioned to him that he should go and give praise for the disease heading toward remission.  Without looking up to me he casually mentioned that God is not helping his disease, the medicine is.  I was caught totally dumbfounded.  I then followed with asking him who he thought the idea of medicine came from and with this he answered, "doctors".  I was left speechless.  I had no response.

Maybe a day or so later, I asked him why he thought God is not helping him.  He point blank told me that he did something wrong.  He has no clue what he did wrong, but that he must have done something wrong for God to punish him with this disease.  My heart sunk.  I tried to explain to him that he has done nothing wrong, but he cannot be convinced.  I told him that I am going to find a way to prove to him that he is not being punished.

I have googled some (not as much as I need to though) and have even emailed one of the pastors at the church (I have not received a response, but she has been really busy as of late).  I then was laying down in my own bed and in one of those twilight kind of sleeps (you know, the one where you are somewhat aware of your surroundings, but still partially sleeping) and it came to me that I, too, at times feel like I am being punished for something when my arthritis acts up.  I totally get what the kid means.  I know deep in my heart that I am not being punished.  There is a reason for me having rheumatoid arthritis and there is a reason for Jacob getting Berger's disease.  We just do not know it and we may never know the reason.  I personally feel that having arthritis has made me a better person.  I can understand and relate to my patients better.  I am more sensitive to others.  For Jacob it seems to have done the opposite.  This disease has made him hard.  Maybe it is just our personalities.  I am forever the optimist, while he is pessimistic, like his dad. 

I explained to him yesterday that I understand how he feels.  I get that he feels like he is being punished.  I have faith that we are not.  He does not have that faith.  So now that is a task for me.  To help him develop that faith.  Positive attitude goes a long way in treating illness.  If anyone reads this, and you have some suggestions for me, leave a comment.  I could use the help.

Thursday, March 1, 2012

a VERY GOOD clinic update

Jacob has gone 4 weeks without a clinic appointment. This past Tuesday he had one.  I work at the hospital where his clinic is and I am allowed access to his medical records at work so, of course, after each clinic appointment I read the doctor's notes and check the lab results. Last night I checked his labs and they are looking good! The only thing that was abnormal was that his urine still had protein and blood in it.  The blood was 3+ and it has been that.  The protein went to 1+ which is the best it has ever been!  His H&H were a tad low, but no where near needing attention to.  His cholesterol was good at 150.  The next visit I am going to see about taking away the Zocor.
Tonight I checked the doctor's note and was very happy to read, "Thus in summary, Jacob appears to be heading into at least partial remission of his IgA glomerulonephritis". PRAISE THE GOOD LORD ABOVE! I knew that with medication, diet change, and God's grace that he would get better!  Now to get those kidneys into full remission!!
 

Monday, February 20, 2012

The phases of grieving

Depending on what website or book you read, people go through stages of grief.  Some say there are 5, some say 7.  Joe and I were talking last night about Jacob and I think he is somewhat working through these stages with dealing with the diagnosis.  I glanced at the stages and although he has not done them in the order some sites show, he definitely has hit on some of them.

He was in shock when first diagnosed.  I think we all were. How could a relatively healthy kid get such a diagnosis.  I mean, it is not a cancer diagnosis, but this is a chronic disease, one that he has to deal with the rest of his life.  This was a shock, for sure.

He was then depressed.  I would say that most of the depression was contributed to the medication he was on, but even after the meds were discontinued, you could see a bit of the depression lingering.  Can you blame him though?

Now, he seems to be angry.  Again, we dont blame him.  He is angry that he got the disease and that it is chronic.  He is angry he has to take medication. He is angry that he has to limit his sodium (although I explained to him that his sodium limitation is really what a healthy adult should consume).  He even mentioned his anger towards God the other day.  It was just a passing comment, but this is what really clued us in on his anger.  This is something he has to work on.  He doesnt express his anger often.  Thirteen is a hard age for any kid and to add a chronic disease to the mix can bring about trouble.  Right now his anger is controllable.  He takes his medications like he is supposed to and he watches his sodium intake VERY well (freakishly well if you ask me). It is just the random comments he makes that clues us in on his mood.  I am not overly concerned, but will be keeping a close eye on that kid.

Saturday, February 18, 2012

What a social butterfly!

To think that I was a little worried about the boy!  He has been social all weekend!  Yesterday was an early release day and he walked home with two friends from school.  One spent the night and stayed half of today.  Then he gets a phone call from the boy who we used to live down the street from and is hanging out with him now and will probably spend the night at his house.  And while he was waiting for the old neighbor to come pick him up, his other friend who moved away is in town and wants to hang out tomorrow.  Hmmm...I dont think Jacob has any problems in friend department like I thought....

Sunday, February 12, 2012

Just an update

Jacob seems to be feeling much better.  His fatigue seems to be subsiding, but he is feeling dizzy still.  When I was sick, I felt dizzy also so I am thinking the dizziness is related to whatever virus he has.  I think I am going to have him start taking the cellcept tonight.

We had a good talk about side effects.  I asked him about his abdominal pain and he says that he always has some pain, but "it is pointless to keep mentioning it".  This I did not know. I did mention to him that he only complains about it when he is on the cellcept so I assumed that when he is off of it he has no pain.  He first stated that he always has the pain even when taking the cellcept and then, after thinking about it, stated that the pain must be worse while taking cellcept since he does notice he complains more when taking it. 

Now when I mention abdominal pain, that is exactly what it is...abdominal pain.  The doctor and I have tried to get him to narrow down where the pain is located.  He always just says, "all over".  Oh well, maybe it is all over his abdominal area.  Getting exact descriptions from Jacob is like pulling teeth! 

So that is what we have been dealing with lately, just some crud and medication adjustments.  I am going to a "real foods" cooking class later today.  I am NOT the best cook, nor do I really like cooking, but I believe that diet can play an important role in healing.  Slowly I am changing our entire way of eating.  Not sure if it will be fun, but it sure will be interesting!

Wednesday, February 8, 2012

The crud has hit our home. And a clinic update

Sorry so long since the last update, but the crud seems to hit our house. 

So, Jacob restarted the Cellcept on about Thursday, January 19th.  His cold sore was just about gone.  He seemed to no longer have cold symptoms either.

He had another clinic appointment on Tuesday, January 24th.  His weight was fine.  His BP was also good.  He is still spilling blood and protein in his urine but the protein is slightly less.  Not much with the appointment this time.  He got to stop the Prednisione and that he is very thankful for.  We also get to return in four weeks time!  That we are all thankful for!

So, it is now Wednesday, February 8th and Jacob is sick again.  Monday, he woke up with some abdominal pain and stayed home from school. He slept most of the day away.  When he woke up he felt so cold.  Bone chilling cold.  The poor kid could not get warm.  No fever and no swelling noted.  I am unable to check his blood pressure right now as I have no clue where my cuff is.  Skin color seems okay. He says his urine does not look any different.  He does not report any loose stools.  We dressed him in the warmest socks I could find and his warmest pjs and let him use my electric blanket.  He still could not get warm.  He did manage to go to school Tuesday.  When I picked him up he said he felt much warmer from entering a "hot room where I got a little sweaty and then I felt warm the rest of the day."  I am wondering if maybe he ended up having a little fever and it broke.  Well, today he went to school.  I think he was fine, but I was in bed sick so I had no contact with him.  He called home about 11:30am and said he just felt sick and tired and had a small nosebleed.  I picked him up and we both napped for most the day.  No nausea or anything, maybe a small infrequent cough.  I have diagnosed us with the crud.  We shall see how tomorrow goes.  I decided to stop the Cellcept again.  Tonight's dose was the first to be skipped.  He has been taking a multivitamin so I am hoping he gets well soon and can restart the Cellcept. 

I am just wanting a few months to go by so we can see if the Cellcept will work for him.  If not, I want him off of it so his immunity can rebuild.  I am still on my venture to making our diets whole and healthy.  I am praying this helps his kidneys return to normal.  Although there is no medical cure for the disease, miracles do happen.

Until next time....

Saturday, January 14, 2012

Cellcept on hold

Poor kid.  He got a cold sore about two days after seeing the doc.  I had him keep taking the Cellcept for a few days, but on Monday this past week, I gave the doc a call and he said to stop taking it until the cold sore started healing.  Well the cold sore started healing so we started it again. He got one, maybe two, doses in and now he has a head cold and is coughing lots so the Cellcept is on hold again.  We are giving him Vit C to help boost his healing.  Hopefully he can kick this cold quickly so we can restart the Cellcept.  Cellcept is an anti-rejection med, given to transplant patients, so it lowers their immunity to avoid the body rejecting the new organ.  Even though Jacob is not taking it for a transplant, it still lowers his immunity and this is why he got the cold sore and now cold.  This is also why the med is on hold so his immunity can kick in and hopefully get rid of the cold!

Clinic update (January 3rd)

Jacob had his clinic appointment on the 3rd.  Not much new.  His urine is still spilling protein and blood.  This time the doctor did not say he expected it.  Hopefully the Cellcept starts kicking in soon, if it will at all.  He did gain a little weight, but not too bad.  His blood pressure is the lowest it has ever been and the doc was very happy with that.  110/62, I believe.  Overall, a pretty much status quo update.  We get to skip a week and go back in three weeks instead of two!

Sunday, January 1, 2012

Happy New Year!

Wow, this past week between Christmas and New Year's has flown by!  We mostly did a lot of lounging around, doin' a bunch of NOTHING!  Loved it! Our oldest went back to school before the new year so it was just the four of us to celebrate.  We went to a friend's house for a bonfire.  It was fun, well Joe and I had fun.  The kids were not thrilled, but oh well. 

Jacob's mood is improving so much since the Prednisone is now decreased to 5mg.  Praise the Lord!  It is so nice to see him smile and laugh again.  He is still sticking the the low sodium diet and most days comes in way below his 2500mg limit.  We had wanted to get him on an overall healthier diet, but unfornately, we have slacked off this holiday season.  This year is the year for much change.  I read from a newsletter of a favorite author that she picks a word for the year.  Well, this year I am going to do the same for our family.  This year that word is "organize".  In regards to Jacob, this means organize health.  This is a family goal actually.  I think it is time that we all become just a little bit more healthy.  A better diet and more exercise for all of us.  That is our goal.  I am hoping that with a better diet that we can get this Berger's disease in remission.  I do not want to rely on medication alone.