Sunday, February 24, 2013

Saturday, February 23, 2013

Crazy Week



It has been a crazy week with Tim’s health.  He started out by getting the PICC on Monday.  That was really rough on him with how his body responded to the line placement.  Once he got past that, he had his first dose of his antibiotic in the hospital and we made it back to the hotel so he could rest.

On Tuesday our nurse Jackie came and did Tim’s official intake and his first dressing change.  They always need to do a dressing change the day after the line placement to check the insertion site and make sure everything looks OK after the procedure; after that point, dressing changes are typically once a week.  On Tuesday evening, Tim started to notice an allergic rash on his upper left arm where his PICC is.  Last time he had the PICC he was allergic to almost every cleaner and bandage there is, so we felt prepared this time knowing which one type of bandage and cleaner he was able to use last time and having them on hand.  That’s why it was very confusing to us when a rash showed up 24 hours after the PICC placement.  Because of knowing which dressing he can use, the rash is not caused by the dressing.  It is around the outside of the dressing, which has us stumped.



On Wednesday when he woke up, the rash was flaming red and spreading so we called Jackie and had her come out and look at it.  She was as confused as we were but suggested trying some hydrocortisone cream to help with the uncontrollable itching.  At that point we thought we had figured what was causing the rash and came up with a fairly simple solution.  It turns out we were wrong.

On Thursday the rash continued to spread and would get better and worse without any apparent cause.  By this time it had spread to underneath the bandage, which can be dangerous.  Having any skin irritation near the insertion site has the potential to be problematic and needs to be watched closely.  It is also insanely itchy which makes it hard for Tim to work, sleep, etc. with the distraction.

On Friday the rash was very red and raised, and he now had pain and swelling in his arm too.  After a series of phone calls to our nurse and doctor, it was determined that Tim needed to go to the ER to have things checked out.  Thankfully a friend had offered to take our older 2 kids over to her house to play so we only had to bring Jonathan with us.  At the ER they did a chest x-ray to make sure the end of the line was still in the correct place as well as an ultrasound of his arm and chest to look for blood clots.  Thankfully they were able to rule out any serious complications.  However, we are still stuck with this uncontrollable allergic reaction with no idea what he is allergic to.

Today is Saturday.  Tim has had a horrible day and is in a lot of pain due to herxing.  “Herxing” is a short-hand name for a “Jarisch-Herxheimer reaction.”  This term refers to the worsening of symptoms due to the die-off of the bacteria.  It is a good thing that this is happening, as it means that his medication is doing its job, but it is very unpleasant to experience.  His rash is still bad, and we are very concerned about it.   A lady from our nurse’s office who helped us through yesterday (our regular nurse wasn’t working yesterday) has been calling throughout the weekend to check on Tim and see if we’ve seen any improvement.  Since he isn’t seeing any improvement, and is even worse at times, we have a nurse scheduled to come see us again in the morning.

At this point, the rash has been really bad for 5 days, and we still have no idea what is going on.  It is really stressful not knowing if we are doing something wrong or dangerous because we have no idea what his body is reacting to.  A few different times we have thought that we knew what was causing it.  But then, when we changed what we thought it was, the rash didn’t seem to get better. 

For tonight, we will sleep with an Epi-pen on the nightstand and hope we can make it to our nurse visit in the morning without another ER visit.

Monday, February 18, 2013

PICC is in


We arrived at the hospital around noon today for Tim to get his PICC put in.  I wasn't sure if or how long I would be able to stay with Tim given my current health situation, so we were very thankful that Tim's dad was able to meet us at the hospital and help us through the rough time.

Everything seemed fine as we were getting checked in and talking with the nurses.  The doctor (who happened to be the same doctor who placed my PICC less than 3 months ago) was very nice and came in to talk with us before the procedure at our request.  When Tim had his PICCs before he had several complications, mainly revolving around being allergic to everything.  Because of that, we had to bring our own specially ordered bandages from home and request that they use a different skin cleaner than they normally do.  They also ended up having to stitch the line into his arm because he is allergic to Statlocks, which are normally used to keep the line in place. 

According to the doctor, the placement itself went well.  However, Tim had a hard time tolerating it because he was very sick and weak during and after the procedure.  After the PICC was in, he had to go down to the infusion center to have his first dose of the antibiotic Rocephin.  That was uneventful.  That is the medication he was on last time, so we suspected he would tolerate it fine.  In the coming weeks he will likey add in another medication or 2.

Thursday, February 14, 2013

PICC Consultation

Today we had Tim's doctor's appointment to discuss plans for his PICC.  It was awful to get there with how Tim was doing and we almost didn't make it, but we ended up making it there and through the appointment.  This was a new doctor for Tim, though I have seen her once in the past.  The appointment itself went well, and Tim liked the new doctor.  He had a bunch of labs drawn so we are waiting to get the results back on those.

His hospital appointment is scheduled for noon on Monday.  Tim is really stressed out about that, but we are so hopeful that this will help him get over this current hurdle.    The doctor is pulling out the "big guns" and we're expecting big things.  Our doctor said that it typically takes about 3 months on IV to get over the initial horrible-ness, and that is basically what I have experienced.  So, Tim will likely have a very rough next few months, but we are hopeful that he will be well enough to go fishing, play basketball with the kids, and all the other things he enjoys by summer time.  Please pray with us that that will happen.  He has been in such bad shape and really needs a breakthrough.

Wednesday, February 13, 2013

Our Lyme Story - Part 2


 

This is a continuation of our Lyme Story - see Part 1 for the beginning.

Tim has been better and worse throughout his 4+ years of being sick, but he is currently in a very bad spot. He is basically back to where he was in the beginning, unable to get out of bed. Thankfully, he now has the option to work from home, so that is what he does currently. His boss has been great in working around his limitations. He will be getting another PICC in the next few weeks, and we are hoping and praying that that will help him see some improvement. He has been in a free-fall with his health lately and we are anxious to get him back on track.

I didn't have a lot of bad symptoms for the first couple years I was sick. That was when I was pregnant, and it is said that often pregnant women get a reprieve from symptoms due to how the hormones take over the body. I hit a wall in April of 2012, and last summer was really rough for me. I got a PICC this past fall, and I am currently in month 3 of my IV treatment. The beginning was very difficult, but I am so happy to be seeing some slow improvement. The projected length of my IV treatment is currently around 9 months.

Our son Andrew just recently stopped treatment after 2 years. He seems to be doing better, but only time will tell. We are hopeful that he can put all of this past him and focus on growing up like any normal healthy boy.

The newest development in our continuing story is the we are currently living in a hotel after a pipe caused water damage in our home. We are in the midst of an insurance claim, and we're anxious to get back into our home. We have also recently discovered that our home had a severe mold problem. Given the strong correlation between Lyme and mold toxins, it is very likely that that is a big part why Tim especially has been experiencing much worse health problems lately. We have been able to have that taken care of while we were out of the house anyway, so we are hopeful that that will also help Tim as well as the rest of us get back to better health.

Thank you for your support of our family during this trial. We appreciate it and will do our best to keep you up to date on what is going on with us.

-Tim, Rachel, Sarah (age 7.5), Andrew (age 5), and Jonathan (age 1.5)

UPDATE 4/11/13: A lot has changed since I originally wrote this post 2 months ago.  Tim got a PICC in February and had a rough start (read parts of it here and here).  Thankfully he has not had any more complications, but he has not seen much improvement yet, so we are pretty bummed about that.

At the end of February we were able to get back into our house after the water incident.  It is so good to be home.  We are still dealing with the insurance company, bank and contractors to get all the loose ends tied up, but that is almost behind us.

In March, Andrew broke his leg, so that has been keeping us busy.  He had a full leg cast at first, but he currently has a cast up to his knee.  That makes it a lot easier on me since I have to carry him almost everywhere.  He is able to use a wheel chair when we leave the house.

Also in March, Tim lost his job.  Even though we kind of saw it coming, it was still a huge blow.  As I mentioned in the original post, his boss was so accommodating in allowing him to work from home so it really was a perfect situation.  At this point, we're not sure what we're going to do since he's much too sick to interview, let alone hold down a job in an office.

Monday, February 11, 2013

Our Lyme Story - Part 1


 


Our Lyme story begins in 2008. Tim had recently started a great job with a big corporation, and we were thrilled to have just bought our first house with our young children who were 3 and 1 at the time. About 3 weeks after we bought our house Tim got really sick, and he hasn't been well since then. He spent the first 5 months of 2009 on disability from work, lying in bed and going to nearly 30 doctors, to no avail. He lost a bunch of weight, was in constant pain, and the former athlete couldn't even walk to the kitchen for a snack without needing a nap. I remember telling him through tears that we had to figure out what was going on with him or I was afraid he was going to die.

We eventually figured out that he was struggling with Lyme disease. In May of 2009 we had to travel to New Jersey from Minnesota with our kids to get him into a specialist who could help him. He began treatment then, and then he did 6 months of IV treatment in the spring and summer of 2010. The PICC line in his arm that was delivering his IV medications got infected so he had to have it removed. Since then he has been on oral medications as well as over a year and a half of twice-weekly Bicillin injections.

In early 2010, I, Rachel, started noticing a lot of the same symptoms Tim had in the beginning. I was diagnosed with Lyme in May of 2010. Lyme can be active in one's body but dormant, and there is a big risk of transferring Lyme to the baby during pregnancy. Our younger child was only 2.5 at the time so we had him tested as well. Sadly, he also had Lyme. We were now dealing with 3 out of the 4 of us in our family fighting this disease. Thankfully our daughter has remained healthy throughout all of this.

I was surprised to find out I was pregnant just 3 months into my Lyme treatment. Thankfully, I had a great doctor caring for me during my pregnancy. We had our baby tested at the time of his birth in May of 2011, and he did not get Lyme from me. Praise the Lord. I cried happy tears the day we got that news. :-)

to be continued...
(read Part 2 here )

Friday, February 8, 2013

Hotel Living

A sweet friend asked how we're doing, so I thought I'd share a quick update with anyone else who might be wondering :-)

Almost a week in the hotel so far. House is coming along. They found a bunch of mold in our house, which we weren't surprised about. We have to have that remediated before we can move back into our house, which is totally separate from the insurance claim. That adds a big headache, but it seems that that could be the cause of Tim not getting better. He's pretty much worse than he was 3 years ago, and that makes sense if the mold has been growing for a while. It's a huge and complicated process, but our parents are helping us navigate it all. We're hopeful that taking care of that should help a lot. We had our dr appt yesterday. We had to do a conference call instead of going in because Tim was too sick to go, but it went pretty well over all. We got a lot of info, and it was a huge deal for us to find out that our Lyme dr is somewhat of an expert in the correlation of Lyme and mold toxins. That is really Providential. He is able to help us heal our bodies and give us advice about rehabbing our house. Regarding Lyme treatment, he said he likes to see people on a PICC for a minimum of 9 months if possible, and I'm 2 months in. Tim will likely need a PICC in the next month or 2 also, so that should be an adventure. There is a lot on our plates right now, but at least we feel like we have some direction and maybe even some hope.

Welcome To Our Lyme Life

Thanks for visiting!  We will be sharing more of our story as time goes on.  Please stop back!