Transfusions and CBCs in Dayton too slow; Todd becomes Neutropenic

When Todd went in for his third day of Chemo on Wednesday, January 14, 2015, they checked his blood counts again.  His hemoglobin dropped from 8.0 on Monday to 7.9 on Wednesday.  So, he needed a transfusion. 

But the nurses and staff can't seem to get the ball rolling.  First, they stalled collecting blood to have his type and screen done to order blood, because they say this can't be done at the Kettering location. So, he had to drive to Miami Valley South to have it drawn.  Apparently, only a nurse is allowed to draw blood from his Hickman Catheter Port.  The phlebotomists are not allowed to touch it.  They can only draw from his arm.  So, this means he has had to sit and wait for a nurse, when one is done with their own patient to come draw his blood.  This has taken anywhere from 30 minutes to over an hour.

After waiting, a phlebotomist came up and asked him if he just wanted stuck in the arm and he said yes.  He was tired of waiting.  So, they got the sample and told him it could take up to an hour to get the results.  He was tired and so he told them just to arrange to have the transfusion done the next day.  They made an appointment for him at the Main Campus of Miami Valley Hospital in Dayton for the next afternoon. 

He shows up there the next day and they can't get the results from the type and screen done at their South location (they have different computer systems).  So, he waits an hour for them to get the type and screen.  Then they have to order the blood.  It always takes about 1 1/2 hours per unit of blood and he always gets 2 units.  So, needless to say it was a long day. 

Today, Monday, January 20, 2015, he purposely goes to the Cancer Center location at Miami Valley South, as arranged at his last appointment with his local oncologist, so that he can get his blood drawn there on non-chemo days.  If he needs a transfusion, he can have it done there (supposedly).  When he gets there, there is NO standing order, or orders of any kind, for him to get his blood work done!  So, he has to wait til they call the doctor and get orders.  Then, there is no nurse available to take blood from his Hickman again, so he waits.  After getting frustrated, he allows them to stick him in his arm again, just to get the blood sample.  Then, they say it is going to take another hour to get the results and that is with it labeled "STAT."  Feeling pretty confident he doesn't need a transfusion, he leaves and tells them to call him with the results and if he needs to come back he will.

Hours later, they call.  Instead of giving him his CBC results, they just said he whites were low at .7 and that's all.  So, he calls back asking for the rest of the numbers; of course he can't get anyone to help him.  He has to leave a message for someone to call him back.

Late in the day, someone from CompuNet from Miami Valley South calls the house and says that they finally got a standing order for him to have blood work done there from here on out, but that he will have to fill out all the paperwork over again!  I don't know if he wants to go back there if it takes 1 hour STAT to get blood work results.  At the Kettering location it takes 10 minutes and at the Cleveland Clinic it takes about 15-20 minutes.  So, I ask her why can't they get someone to take it from his Hickman, and she informs me of the policy that only a nurse can do it.  She said, "He has good veins, they can just stick him."  And, trying to keep my cool, say, "No, not really, not when his platelets are low, he doesn't need to be stuck!  It could cause him to bleed and bruise!"  And she says, "Yes, I guess your right.  I hadn't thought of that!"  Ugh...

Between waiting on orders, waiting on nurses to draw blood, waiting on results, waiting to get a type and screen, and waiting to get the type and screen results and getting blood ordered, to actually getting the transfusion, Todd is just tired of waiting.  He doesn't have much energy or patience right now.  Who would? No patient should have to go through this much confusion and waiting!

It looks like I will be calling the local oncologist's office to let the doctor know that not much has been going according to his arrangements.  I think he needs to know that something is wrong with the process, which should obviously function more smoothly than it does.

 He finally got a call back from another nurse with the other results:  His Hemoglobin is a 9.3, well above an 8; no transfusion needed.  His Platelets have dropped to 67,000, but well above 10,000; no transfusion needed.  But, his other counts are problematic: his whites dropped to .7 or 700 and his ANCs to .3 which makes  him Neutropenic (anything below .5), which means new restrictions on diet, foods, environment, getting out, etc.  These very low numbers put him at HIGH RISK for contracting infections and little immunity to fight them.  Under other circumstances, they could give him infusions of Neupogen to help build up his white cells, but unfortunately, they cannot do this when there are cancer cells present, because it could cause the cancer cells to multiply too. 

It is normal for his white counts to drop after finishing a round of Vidaza, and they will usually begin to bounce back after a week or so.  That being said, its not good that they are this low.  We all are going to have to be careful in the meantime.

I'm glad he has an appointment back at the Cleveland Clinic with his BMT doctor on Wednesday, so we can ask if he needs to go back on his antibiotics.  We are not sure what this visit will entail except for the routine CBC and seeing the doctor.  I'm sure they will take blood for a chimerism study and we will discuss whether he will do another round of Vidaza before the stem cell transplant.  At some point, I'm sure his BMT doctor will schedule another bone marrow biopsy to check the progression or regression of the disease.  He needs his blasts cells to be as close to 0-1 as possible before beginning the stem cell transplant. 

I will post more after Wednesday.  Thanks again for caring enough to read this blog and to pray for Todd. 

Day +42: Frozen Shoulder update

Todd has his appointment with a Orthopedic doctor at the Cleveland Clinic on October 27, 2014.  He reviewed Todd's MRI results and concluded that there was a tear in the Glenoid Labrum tendon in the rotator cuff and an area of his shoulder joint was dented from a prior dislocation (at age 16 when Todd was sliding into home base!) which is called a Hill-Sachs deformity. He described the injury like the humeral head (pictured above) is like ping pong ball and when the dislocation happened it puts a dent in it.   Todd's is not serious enough for surgery and it is likely he has been living with this with no serious problems since that time.  Neither of these two discoveries are responsible for Todd's frozen shoulder in his opinion.  He is not sure what caused this to happen.  He said it is common in people with diabetes; one day they can wake-up and have a frozen shoulder for no reason. I think it is from the Neupogen.  He said it was possible. 

The frozen shoulder has loosened up considerably on its own with messaging, hot showers, heat, and doing some exercises we found on YouTube.  To get his range of motion back to normal, the doctor recommended physical therapy.  He will have an evaluation done by a physical therapist at a nearby Cleveland Clinic location in Avon Lake on November 11, 2014, who will recommend further treatment at that time.  He will follow-up with the orthopedic doctor on November 24, 2014, at the Main Campus of the Cleveland Clinic.  He also recommended heat and/or ice, whichever works best.

Meanwhile, I can't say enough about these exercises we found on YouTube.  They are the same ones recommended to us by the Orthopedic doctor in a brochure he gave us.  So, if you ever have a frozen shoulder, I highly recommend you check out this video:  
  
http://www.youtube.com/watch?v=TE3AF_NOw4s

But, I'm no doctor! So, as in all medical disclaimers-check with your doctor!


More information:
Hill-Sachs: 
http://orthopedics.about.com/od/instabilitydislocations/qt/Hill-Sachs-Defect.htm

Day + 27: Frozen Shoulder side effect

Today Todd saw the bone marrow transplant doctor. Everything has been going well, except for Todd's shoulder pain. Todd has been experiencing terrible shoulder pain since about 4 days before he was discharged from the hospital. At the time, they said he could have been caused by the Neupogen infusions they were giving him, but we kept thinking it was from laying in the bed or sleeping on it wrong.  He even considered deterioration from playing sports.  They treated the pain with oxycodone since he is not allowed to take any anti-inflammatory medication like Ipuphron. We thought it would go away...

But it hasn't. Instead, it has only gotten worse in the last few days. He has very limited mobility of his left arm. He can't raise it up at all and when he tries he is in excruciating pain. So, we brought it up to the doctor again today, and she said it is likely "Frozen Shoulder" and that it was likely caused from the Neupogen. I had never heard of it before so I looked it up online. 

http://www.mayoclinic.org/diseases-conditions/frozen-shoulder/multimedia/frozen-shoulder/img-20007530

It can occur after a serious medical condition. I also looked at the side effects of Neupogen and it said that muscular problems have occurred about 22% of the time in studies and it occurs in the left shoulder (exactly the shoulder and arm that hurts Todd). Todd thought it was his rotator cuff, but we ruled that out too because it was his left arm, not his dominant pitching/throwing 

right arm. 

So, what happens now?  They are setting up appointments for an X-ray, Orthopedist, and physical therapy to confirm the diagnosis and to receive treatment to loosen up the joint and thereby relieve his pain. However, I'm afraid this is going to take weeks or months or possibly longer to resolve. 

We will keep everyone posted. Please pray that he can see a specialist soon and for pain relief. 

More information http://www.drugs.com/sfx/neupogen-side-effects.html

Discharge Date Set as Platelets go to 13,000: October 8, 2014

Before leaving the hospital last night to go spend the night at the hotel, I put my hand on Todd and said a prayer that his platelets would come up today.

"I do set my bow in the cloud, and it shall be for a token of a covenant between me and the earth." Genesis 9:13

Day +21, October 7, 2014  Total Days in the hospital: 30

I gave praise when he texted me this morning saying: 13,000!  What an answer to prayer!  His other counts were steady even though his white count had dropped slightly to 1,070 from 1,810.   No transfusions were needed at all today!

Last night he did have a couple bouts of loose stools and he took 2 Imodium tablets to help.  This caused a bit of concern today when the doctors came by during their rounds.  While Todd has not had a fever, they are still cautious about any type of infection or Graft versus Host of the intestines.  They don't want to discharge a patient with an infection, only to have to bring them right back in for re-admission. So, today they were just going to keep an eye on it. They decided that he would get an IV bag of Neupogen, a medication which helps stimulate the bone marrow to increase the production of neutrophils (what I refer to as ANCs)  in white blood cells. 

The discharge papers were prepared and Todd's bone marrow transplant nurse coordinator stopped by to discuss the discharge process tomorrow.  So far, Todd has not had any diarrhea or loose stools today.  He walked a mile in the halls and ate two full meals and a banana for breakfast today.  This is the most he has ate in a single day since the chemotherapy.  He has lost a lot of body hair, but has just started loosing some of the hair on his head this week.   Overall  he is very healthy and they are not concerned about the 20 pounds he has lost from lack of appetite. 

We had to compare our own thermometer and blood pressure cuff to that of the hospital, so we could check their accuracy.  I had to show the nurse I knew how to change his Hickman Central Venous Catheter dressing and flush his lines.  We discussed diet, symptoms, and how and when to call or take him to the emergency room if there is a concern. 

He noticed a small patch of red irritation on his left arm after his nap this afternoon.  The nurses have made a note of it and we all have to keep an eye on it in case he is developing Graft versus Host of the skin.  Her first reaction was, a little Graft versus Host isn't a bad thing.  While I have blogged about GvH and have mentioned it numerous times as something that is bad, there is truth in the nurse's statement.  This is called the Graft versus Cancer Effect.  Essentially, if any of Todd's bone marrow survived the chemotherapy, it can be attacked by the newly grafted bone marrow that came from his brother.  Todd's new bone marrow will think the old bone marrow is an invader and work to kill it, keeping the chance of relapse to a minimum.  As a matter of fact, they will periodically test to see how much of Todd's blood cells are from his old marrow versus the new.  The doctors can then manipulate the amount of immunosuppressants they give him to increase the Graft versus Cancer Effect if they feel there is too many cells from the old marrow that has survived.  This effect will work to eliminate or keep those cells to a insignificant trace.

I brought a small suitcase today to start packing up some things to take back to the hotel tonight.  Tomorrow will be a busy day.  We will need to finish packing up, meet with the pharmacists who will go over all the medications Todd will be taking on a daily basis, go over discharge instructions with the nurses and the nurse coordinator, and say our goodbyes to everyone, etc.  We already have a three page schedule of appointments set for the next three months to put in our calendar!  Finally, I can drive him back to the hotel and get him settled in.  By then, he will likely need a nap!