Today's summary Friday Feb 24, 2017

Today David's platelet count before his infusion was 50,000, so it is going in the right direction again.  He will see the PA on Tuesday afternoon.  He and I walked over 30 minutes in the park but covered very little pavement because he was exhausted after his treatment and walked extremely slowly relying heavily on his walking stick for balance.  Being out in the sun and saying hi to the bikers, dog walkers and runners was lovely.  We were passed by a guy pushing a baby in a stroller with a toddler holding his hand.  The toddler was fascinated by David and kept looking back at him until they disappeared in the distance.  We'll get out there again tomorrow.  It will get better and better even if it takes a while for him to handle the hill after several months of walking the mall or WallMart.  I know that he is really tired because he hasn't tried to print a bunch of stuff off of Politico or the Huffington Post😜  He's seen at least one doctor every day this week and has doctors scheduled for next Mon and Tues.  I told Tracey at Dr. Clemo's office that we should just have a standing appointment with Dr. Clemo.  David's hearing is so bad that he routinely mis-hears so I have to go too.  Yesterday he thought that the ENT doctors found a new growth in his ear and ordered a CT.  I missed that appointment.  After calling the office and speaking with the Doctor, they found a possible problem in his left nose on a CT from the hospital two weeks ago and want to follow up with a PET scan.  I told Dr. Peter that a similar thing happened last year but that Dr. Davidson reviewed it, followed it up several months later and decided that it was a surgical artifact, not a growth.  Dr. Peter still wants the PET scan, so we are waiting for insurance to approve it and the Imaging place to schedule it.

He plans to keep the usual weekend schedule with temple tomorrow and walking in Prince William forest on Sunday.  Good for him.  thanks for your prayers.  We still need them.

One infusion down one to go

David finished his first IVIG infusion and did not like it.  He had no adverse effects but they stuck him a lot and it was really boring.  The lump is probably a hematoma that will be absorbed.  They will watch it..or we will...and if it gets bigger then they'll take a closer look at it.  The prednisone continues at the high level further contributing to David's feeling jittery and grumpy.  Maybe his platelets will be really high tomorrow when they do the bloodwork and then he can taper off of the steroids.  His blood pressure and oxygen levels are great.

The infusion room is mainly for cancer patients undergoing chemo.  There are huge Windows looking out over a wooded area with many colorful bird houses.  The chairs are comfy recliners.  The other patients getting chemo have ports, most have no hair but they seem positive and banter with the nursing staff.

David has an appointment with his ear, nose and throat Doctor and then would like to walk in the park.  I'm going to take my walking shoes with me to the doctor's appointment and then we can just swing by the battlefield to walk on our way back home.  That will put both of us in a better mood.

Timing

So a couple of days ago I noticed a large bruise on the inner back of David's leg and asked him about it.  He is taking prednisone and was snarky and flinched when I tried to touch it pretty much yelling at me saying it was nothing.  So he's been to the hematology office and today to see his internist but didn't even mention it much less ask them to look at it.  So I didn't either because I didn't want another scene about it.  Mistake.
Tonight, tonight, out of the blue he sat on the couch, pulled his jeans down and told me there was no bruise.  I got up from my recliner, paused the PBS show I was watching and showed it to him and then returned to the recliner and show.  In a minute he said HMMM there is a lump there.  Feel this.  I got up from the recliner, paused the show and damn if there is not a lump about 2 cm. in diameter under the bruised area.  I am worried that this is a blood clot and don't want it to travel.  Luckily he is going to the hematology office at 8 a.m. Tomorrow.   Although to be safe, while he is getting his IV Ig tomorrow, in addition to trying to change his SS automatic deposit to his new checking account that he opened after closing one because he lost his checkbook,  and paying some bills online because the new checking account came with only ONE check until the new ones arrive in two weeks, I have to call the internist again to see when she can see him between his infusion and his ENT Doctor appointment or Friday morning.  I am worried about him and frustrated with him.  He has always been forgetful and looses things all the time but they eventually turn up...usually after he has gone online or to Costco to replace them.  The prednisone is turning up the volume.  He is worried and on edge anyway and the lovely steroid exacerbates everything.  I don't want to be mean but it seems like that I am coming across this way to him on top of everything else.  I know that he is also worried and said that her is weary of one more thing after another, after another, after another.  PLease keep us in your prayers.

More tests/ treatments

Today David went to the Hematologist.  His platelets were down to 24,000 from 71,000 last week (normal between 150,000 and 450,000) but his hemoglobin was up to 11.2 (from 9.4).  So the Prednisone is not working and he will have an IV infusion of immunoglobulin on Thursday and again on Friday after which they will check the platelet levels again.  If they don't go up then the next step is the dreaded bone marrow aspiration and analysis.  They do it in the office with no anesthetic or in the hospital with twilight sleep.  They wanted to do both immediately but he is delaying with the hope that the IV Ig will work.  The bone marrow gives the most information about what is causing the platelet damage.  David is very discouraged.  This makes him confused too.  I've had a mini-flu or early spring allergies or something so I'm in a less than optimal supportive mode.
Tomorrow he sees his internist.  Thursday he sees the ear, nose and throat doctor and Monday has his feeding tube replaced and sees the pulmonologist.  He is congested and has a very hard time getting the thick mucus out and straining could cause another bad bleed.  I started him on some Mucinex too thin it out and maybe Dr. Clemo or Dr. Dash will suggest something else.  On the positive side, his oxygen levels are great and he is neither tired nor in pain.
Keep us in your prayers and stay tuned.

Home again

David is home.  His platelets were 72,000 this morning.  We are going to Costco for Prednisone and then back home so that he can watch his Sunday shows that are recorded and I can grade Discussion Boards and labs online.  Thanks for all the prayers and offers of help.

ITP is the tentative diagnosis

David is feeling fine but had an active bleed again last night and so he got more platelets.  The hematologist said he thinks this is likely idiopathic thrombocytopenic purpura (ITP) an autoimmune situation where his body is attacking and destroying the platelets.  He started out at a count of 9,000 when he was admitted on Friday.  Yesterday it fluctuated between 40,000, 30,000 and 40,000.  If it gets up to 50,000 with no active bleeds he can come home. Normal values are 150,000 - 400,000.  He was out of bed yesterday to take a walk and use the bathroom but otherwise was in bed.  He is on megadoses of prednisone to combat the immune response and will be on it for six weeks if it works.  If the prednisone works then the diagnosis is confirmed.  If not then then next step is a bone marrow biopsy.  Since his other blood cell counts seem in the normal range this is not the first step.  I remember my first and only bone marrow sampling.  The pain was extreme even with the local anesthetic.  This was in 1973 when my pernicious anemia was diagnosed.

This ITP may just go away as mysteriously as it started.  He seems to be his usual self...in a pretty good mood as long as he has his meals and meds on schedule, has the urinal in an easy to reach place and can read his Kindle and iPad email and blogs.  The TV is annoying because you cannot pause your show when doctors or nurses come in to do stuff.  He is terribly bruised from bleeding under the skin but says it doesn't hurt.  Please keep him in your prayers.

Overnight stay

It looks like David will be able to experience the newest hospital in the region that is down the street from our house:  The Spotsylvania Regional Hospital.  His platelets are so low that he is not allowed out of bed.  He will probably get a transfusion.  The nurse just took his blood to be typed, changed him into a hospital gown and attached all the leads to the monitoring devices.  He seems OK with this situation and is reading his blogs on his Kindle Fire.  I'm using his iPad because mine was on its last gasp and needed a charge so I left home without it.  We thought that they would pack his nose and that would be all.  Naturally they had to be thorough and did blood work and discovered this low platelet situation that can prevent blood clotting.  I hope that he gets patched up and can get back home fast.  He is in no pain but is just alarmed with the blood clots he coughs up and the dripping nose.  It is not gushing just a slow drip.

From Spotsylvania Medical Center

This morning I woke up to David having a serious nose bleed.  Fast forward through. Trip to his local ENT who sucked out clots and saw no evidence of further bleeding BUT told him to go to the hospital if he had more bleeds.  And hour after we got home he started bleeding again so we came to the hospital near us where they found low platelets in his blood and just did a CTscab.  Stay tuned.