That Method Didn't Work, So What Do We Do Now?

Back in May and June, I shared with everyone the details of Robert's diagnosis of  Idiopathic Thrombocytopenic Purpura. This is an issue where his body is attacking his platelet count and causing it to drop over time. Since your platelets are what help your blood to clot, they are kind of important.

When he was given the diagnosis, the doctor put him on a daily dose of Prednisone. So, for those of you who may have thought it was putting on weight because of his puffy chipmunk like cheeks, it was because of the medication. He had to have blood work done just about every week to see if it was increasing his count. In the beginning, it was. After just a couple of weeks, his count increased greatly. We were ecstatic. The medicine was doing its job. But, then his count started to drop again. The doctor said it is not uncommon for a dip every now and then. It will usually spike back up again. Only his hasn't. While it is not nearly as low as it was when he was first diagnosed, it is still low. 

So, the doctor wants to try a new approach. He wants to do an infusion similar to what they do for many leukemia patients that have low platelet counts. This will mean he has to spend anywhere from 4 - 6 hours a day, once a week in a chair with an iv in his arm to pump the medicine in him. This is a fairly new treatment for ITP and has been shown to have great results. We certainly pray it works on Robert. If not, the next step is to remove the spleen.

The doctor assures me that having his spleen removed is no big deal, but I don't see it that way. Your spleen helps produce your white blood cells. Your white blood cells help fight infections. So, you are at greater risk for developing many infections. Throw in a disease that can cause you to choke, causing fluid to collect in your lungs and put you at a higher risk for pneumonia, it can be an issue. I want to keep my husband around for as long as possible. I don't want to add more complications to the disease that I know will one day take him from me. 

Plus, the recovery time from this surgery can be lengthy and difficult. There is usually a lot of pain and discomfort as well as risks that are associated. For now, all we can do is pray that the infusion treatments do the trick. He will start them in a couple of weeks and I will keep everyone posted on the progress of them.

As If Dealing with Huntington's Disease Was Not Enough...

For the last 18-24 months, Robert’s platelet count has been dropping. A healthy count for platelets is a range of 150,000 – 450,000. As of yesterday, the count for Robert’s platelets was 36,000.

Platelets are very important. They are cells in our bodies that move throughout our blood and “bind-together” when they find damaged blood vessels. In other words, that cut you just got on your leg is full of platelets binding together to clot the blood and makes the bleeding stop as well helps to form the scab that protects the area until it is completely healed.

Low platelet counts can cause easy bruising, trouble getting blood to clot from an open wound and even frequent bleeding from things like your nose, gums and GI tract for no reason at all. Putting pressure on the wound or bleeding can help assist in making it clot but it will take longer for that to happen and can result in significant blood loss if not careful.

There are many reasons for a low platelet count, too. It can be a medication he is taking, an issue with kidney function or an enlarged spleen. There can also be certain types of anemia that could be causing it. These are all easily treatable. However, it could also be the result of certain types of cancer in the body – mainly leukemia and lymphoma.  Those aren’t so easily treatable.

His primary care physician referred him to an oncologist to help determine the root cause of this dropping platelet count. Yesterday, the oncologist performed a bone marrow biopsy in his office and now we wait for the results. That appointment is next Tuesday.

A bone marrow biopsy is where the insert a needle into the bone and a small sample of core of bone marrow is captured.  Robert says it wasn’t too painful but it was did feel a bit strange and caused some minor discomfort.

Of course, we automatically questioned if this is somehow related to his Huntington’s Disease. All of the googling we have done and the conversations we have had with the doctors say there is no real proven connection between the two. This issue appears to be something totally different and unrelated. But, if we are unable to find a treatment for this and increase his platelet count, we have a HUGE problem in the future.

One of the most common characteristics associated with Huntington’s Disease is when the chorea (involuntary movement) sets in. This causes the unsteady gates and frequent falls that many associated with HD often experience as the disease progresses. This is the time that a normal person seeing an HD person on the street would simply think “Oh, he must be drunk”. 

So, being prone to falling with a condition that will cause problems making your blood clot and heal itself when you do fall can be a huge issue.  

Imagine the scenario: you are experiencing  the chorea – imagine Muhammad Ali’s uncontrollable shaking from his Parkinson’s – and it causes you to fall as you are walking along the sidewalk with your wife. Where you elbow lands was a piece of glass that causes a nasty gash your arm.  Your wife tries to put pressure on the gash to stop the bleeding but she can’t because of the chorea. 

Obviously a bad scenario all around.  That is something we want to stop from happening as quickly as possible.

For today, we await the results of the test done yesterday. Until we have conclusive evidence of what the root cause of the issue is, we cannot treat it. Hopefully, it is just a minor issue that we can easily treat and erase the low platelet count in his body. We pray for God’s healing and guidance as we progress down this path he has laid out for us.