Thursday, September 10, 2015

POEMS Syndrome

I'm rather behind on the updating and I have so much to say!  Our home school started back up the first week of August, so there hasn't been a lot of time for blogging.  I was also waiting on more internet data so I could upload some pictures of our trip in July to Colorado.....

It was a fun summer that went by super fast - as always, but I also think we're wishing our days away waiting on our home construction to begin.  I think we may be seeing the reason behind the holdups, but that's another story.

I'm not sure what to update first, so I'll just go with the "another story" for now.

Two years ago, during my mom's sickness, Brad was prompted to go have a physical.  The physical included lab work that showed he had thick blood, also known as polycythemia, and low B-12.  At this point, he was referred to a hematologist who did extensive testing, up to and including a bone marrow biopsy.  In the end, the doctor determined "he just has thick blood" and placed him on a daily aspirin.

Soon after, he started developing numbness in his feet and lots of swelling in his legs and ankles.

As a child, he had taken half of a baby aspirin and almost died, so the daily aspirin got the blame for the above symptoms.

He was sent to a neurologist who after more testing, up to and including a spinal tap, determined he had CIDP.  He was placed on prednisone for a few months with no improvement.  He was then given a five-day cycle of IVIG with some improvement, so he has continued monthly cycles of this up to this time.

After that initial cycle, he pretty much kept on an even keel.  But then we added weight loss to the mix, and blood clots, and hypothyroidism.....

He did a little research and discovered that Johns Hopkins in Baltimore has neurologists there that specialize in treating this disease.  He just wasn't getting better, so I encouraged him to make the trip. Three weeks ago, he went up there for his appointment and was very impressed.  They spent a lot of time with him and told him they would be in contact soon.

In the meantime, a friend of mine saw a post on Facebook about him going to Baltimore and the reason why he was going.  She contacted me quickly saying that she wanted to talk to me about some information.

I did and learned that she has a friend who has been in ICU at Emory for the past 10 weeks.  She had similar symptoms as Brad and had been wrongly diagnosed to the point that she was no longer able to walk when it was finally discovered what she had, which was POEMS syndrome.  She strongly encouraged me to research this, which I did as soon as I could get to my computer.  I was overwhelmed.  There was no way he didn't have this.

We talked about it and decided we would discuss it with his neurologist at his appointment that week - actually last Friday.  It was as if we turned a light bulb on for him.  He agreed that it was definitely worth looking into.  He called Brad's hematologist that very morning, and the hematologist called Brad rather quickly, setting up an appointment for the following Friday.

It was a relief to feel we were all on the same page.

Then yesterday, he got the call he had been waiting on from Johns Hopkins.  Apparently the doctor he saw there was suspicious of POEMS and actually did blood work for it but didn't mention it - I guess not wanting Brad to worry needlessly.  He told him that he did indeed believe he had early stages of POEMS and that he needed to see a hematologist for treatment as soon as possible.

We are so thankful he made that trip.  Now we can go to the hematologist tomorrow seeking treatment instead of a diagnosis.  It's a little scary, but I've read a lot about this disease over the past couple of weeks.  There doesn't seem to be a complete cure, but it does sound like the symptoms can be treated successfully a majority of the time.

We are also thankful for friends who care enough to speak up when they have helpful information.  Otherwise, when we got that call yesterday, we may have been thrown into a panic, but thankfully we were prepared.

In the research, we have learned that POEMS is often misdiagnosed as CIDP, so if a search for CIDP or POEMS brought you to my blog and you are having symptoms that are not getting better with CIDP treatment, do a little research and see if you might fall into that category.  It is important that POEMS be treated sooner than later.  Unfortunately, most people are at the point of not being able to walk before receiving the diagnosis because POEMS is such a rare blood disorder that it is often overlooked.  Hopefully as more comes to light about this disease, that will soon not be the case and more people will receive treatment early on before things get out of hand.

The IVIG Brad has received over the past several months is what we think has kept him on the "even keel" I mentioned earlier.  Without that, I truly believe he would not be walking right now.  This is something that he will continue as part of his treatment plan - that much we know - but we are looking forward to getting the rest of the story tomorrow.

In the midst of all this, we've seen God's hand working and protecting through it all.  For that, I am most thankful.

I'm also thankful for UPS and the great insurance provided by that company.  Also, the exercise involved in his job has been a source of therapy.  It seems that those with sedentary-type jobs or lifestyles seem to succumb to the disease at a faster rate.  During the past two years, being active has been a great source of help.

In a nutshell, we both feel relieved to have a diagnosis, and tomorrow can't get here fast enough.