Arrived late to Doc's...

But, it wasn't long before Melissa came for me. We , she , I and Jim  walked back to their lab where she took my vitals and drew blood for the CBC. Then we went to an exam room to wait a bit.

When Doc came in , we chatted about how I'd been doing and feeling. Nothing really notiable happened other than very easy bruising...I look like I've been beaten up. My blood test results were within normal ranges save for the platelets which were 24,000 per micro liter. Not good ...but not bad for me. Down from 3 months ago.

Doc said in view of that, I'd need to  come back in two months.

So....my next post will be November 14th.

Happy Autumn !

   Well....the entire drive down to the hospital for my 6 wks.  check up,  there was a 'something's wrong' feeling. I walked into the office , signed in and took a seat; waiting for Jim to come up after   parking the car. He arrived sat next to me.

I/we waited to be called.  After a while...Melissa came to the door ...there were the usual vitals...blood taken...ushered into exam room.

Da-da-dah.  Da-da-dah

Doc arrived with the usual, gentle tap on the door.  What a give away on his face...platelets are up to 30,000 without Promacta!

The kitty to the left says it all.

I told Doc, that I had had  that 'something's wrong' feeling most of the day...saying, 'Gee. Did I get it wrong.' He laughed.

We chatted about some other issues I was concerned about.

I am to return late August, 2 days after my birthday, for only a finger stick.

*sign*

*grin*

Good Afternoon Everyone...

Walked into Tenn. Oncology ...'lo and behold' new gals in the front office!!!
I don't like new people in the doctor's office.  But, it was softened with the return of Melissa, phlebotomist  .
I missed her, terribly. She can puncture a person and one never knows/feels it.   That woman can throw a needle!!!    I luv her to bits.
Melissa filled me in on the skinny with Page and Starr. 
Had a nice visit w/Doc; platelets are only down to 24,000 per micro liter, from previous reading of 29,000 pml.  I had a few spontaneous bruises in the usual indicating places for drop in platelets. But, that's all. No spontaneous bleeding  .

Praise God from whom all blessings flow!

Soooooooo, no Promacta for me. And, a return visit in September. 

Monday, March 7, 2016

I do believe my veins are getting more and more  'tender' with respect to the needle.  Any more,  blood draws are so painful even the touch of a finger tip  on the vein, makes me want to cry.   My Platelets are down to 29,000 per micro liter from 54,000 pml in January. Which is good for having been on a 3mos break from the Promacta. Doc is happy and li'l ol me is happy. If the two of us are happy then Jim is very, very happy.

We discussed  the hope/promise of the Fostiamatinib being released by the FDA later this Sping.   And, how much I do not want back on the Promacta,  in the hope of  a release date. If this is the case...then the three of us will sit down and discuss doage. Which I am sure will be the lowest in view of how effective it is for me. And, go from there.

In view of the fact I had no  spontaneous  bleeding issues and only light brusing, Doc said that I need to come back in two months for a finger stick only.  Well, at least my finger tip will be tender.

ITP weakens the venial walls, so guess that's why my left  arm  just aches and is weak from the inside out.

All in all,  had a nice visit this afternoon, Doc, Jim and I.

See y'all in  May.

First post of the new year...

My favorite phlebotomist, Melissa, is no longer there. Now I have pain.

The usual lab work from a veinal draw.

A complete CBC was done and platelets tallied. This month's test showed the little critters up to 54,ooo per micro liter. Which is fantastic for me. And, the first time this year. Doc came into the exam room all smiles and eyes twinkling with the news.  Jim and I could scarcely believe it since last night when cooking dinner, I had an aluminum foil cut on the crease of my left little finger and dripped all over the garlic bread I was preparing...guess where that went?

Anyway, I think Doc and my ENT had a chat ,because Doc seemed to know what I was going to inquire about . Some of you might recall that the VNG the ENT  had ordered show normal results and the general conclusion was the vertigo may very well be 'prescription' related. And, that it would be wise to stop the Promacta for a bit to see if this helps.  I chuckled to my self, when Doc, smiling,  asked, "Are you going to have anymore surgery?" I answered, "No. Not unless it's on the vertebral artery and  Dr. D----  does it." We laughed. And, Doc  asked how do you feel about taking the Promacta?"  I told him what I told the audiologist and the ENT. Which was that I didn't want to any more because I was tired of the side effects ...the list was ever growing longer. And, that I noticed a marked improvement in my general well being and frame of mind and severity of the vertigo.  Doc said that he felt it would be best if we saved the Promacta for when I 'really' needed it and not have to fall back on the dexamethasone or the immunosuppressive drugs...which would really, really make life a bitch.

So there it is. 

Commencing tonight, I'll begin weaning myself off the Promacta over the next 7 days. 

And, go back  in two months for my next follow-up.

I'll see y'all back here on Monday , March 7th.

The past few months have seen a lot of health issues that I've had to overcome. With the promise of more to come in the months ahead.

In early September, just out of the blue, so-to-speak, I had a rather violent attack of Vertigo. I was in the process of lower myself onto the exercise mat to do some physical therapy for the 3level cervical spine surgery I had undergone last May.  Pow! It hit me  like a Mack truck with the room spinning  my head whreeling and my body pressed into the wall arms sprad backwards clinging onto the wall for dear life. Then came the nausea and the uncontrollable urge to barf! It wouldn't have been more than the 'dry heaves' . But, with a titanium plate in my ncek just behinf the esphagus ...that was not somtehing I wanted to do.

I had a regular appointment with my hematologist a few days later and discussed it with him. He confirmed it was vertigo ,referring me to an ENT (ear, nose and throat). I ended up on their waiting list and didn't get  in to see him until Novemner 30th.

In the mean time Doc took me off the promacta since the side effects I had experiencd exacerbated the vertigo. Lo and behold the bulk of the symptoms dissappeared. But, there was still a cause...the search for all this unleased a barrage of tests that I'm just working my way through. There are only two facilities in Nashville that perform ECOG and VNG....Vanderbilt University Medical Center and a private practice audiologist at Skyline Medical Center.

I have just finished the VNG at Vanderbilt this afternoon.  Now, I have read all the articles about this test and the ECOG with the frightening stories from other suffers. I had been fairly anxious over this which carried over into my visit there. I was blessed with a very kind and reassuring autiologist there. This was nothing like what I've read. Instead, of the warm air bnlowing into each ear, I went thherough a very gentle and warm distilled water flush for 20 seconds. The video segment was done in a rotationg chair with goggles in a dimly lit room with a dot of light moving in specific pattern. My eyers were to track the lights movement and so on. YOu can raad more about the procededure by searching the  tests specificslly.   So, I took this opportunity to talk to the audiologist about how the promacta was effecting me over the past couple of year. He said when all was said and done the their could be a prscription change ahead.  Anyway, todays' results are 'normal'. What this means is that the cause isn't my ears. And, more tests to follow...maybe be even a trip back to my neurosurgeon if the problem is in the vertebral artery . Details of this new saga will follow as I experience them.

Okay. Now we come to my right knee. You all might recal that just three days before my cervical spine surgery I had jumped up from the exercise mat and came crashing down onto the exercise mat sobbing and whailing flopping back onto the mat. Jim scooped me up and off we went to the ER at Souithern Hills Medical Center and so on.   WEll, the PT was now producting negative returns because I wasn't improving...getting worse. So, I went to my PCP and an exam with a MRI revealing a badly torn memiscus. A few weeks later, this  past Wednesday the 16th I reported for out patient surgery under the skilled  hands of the surgeon that cares for the Commadors and other Vanderbilt teams. The procedure was 'arthroscopy and menisectomy. Two sets of tiny sutures on eather side of my right knee. Because of the long time of abuse on it I was told that recovery would take me somewhat longer. I had to go back on the Promacta and the more violent vertigo. My platelets were up to 46,000pml and all went well...very well. Now if I can just keep it babyed. Oh, and physical therapy for this begins this Monday, 28th.

My next visit with Doc isn't  until 1-11-2016. The discussion will be about the alternatives to promacta...a short chat indeed

Today was a doctor visit. And, a venial blood draw to check liver function and blood chemistry .

All vital signs were take and noted. My platelets had fallen to 34k per micro liter. Which, is still just fine, for me. Keep in mind I've been as low as 5k per micro liter for months without incident. And, I underwent major spine surgery with the same amount of platelets as today with only 100 milliliter blood loss...which I am told is less than a subject with a normal platelet count.

Doc asked how I was doing...if I had any ITP issues. I replied 'No. But, I do have other issues." And, I proceeded to tell him...last Wednesday, 30th while sitting at my dressing table  'doing my girl thing' I experienced sever dizziness, nausea, sensation of the room spinning rapidly and blacked out ...waking up with my forehead on the dressing table. This passed as quickly as it occurred and I was just fine for the rest of the day.

The following Thursday produced an uneventful rise out of bed and was 'normal' until I laid myself on the exercise mat to do my floor PT. As I lowered myself backward onto the mat and my head hit the mat...the room began to spin rapidly, causing me to throw my arms out to the side and dig my nails into the bedroom carpet...nauseated feeling with head ache soon followed. I closed my eyes to ease the sensation and all went black. I woke up, calling for Jim. He helped me up. I stood with my back against the wall while he fetched some ice water which usually settles my tummy. The split second that sip of water hit my stomach , it was all I could do to keep it down. I fought the urge to vomit for almost 5 minutes before it finally subsided.

I rested for about a half an hour before resuming my floor PT. All was normal the rest of the day. The rest of the week and Saturday/Sunday were ver minor episodes that lasted most of the day. I have forgone alcohol in the hope it would lessen the symptoms...it has not...seems to make them worse. Go figure.

My hematologist said this was vertigo and called in a Rx which my insurer will not pay for due to my age.  Age which way young or old? He also, said it was time to take a break from the Promacta , if not to simply see if the drug was causing these issues along with the increasing lack of improvement in PT results.  I told him, all I knew was that it seemed from the time I restarted the Promacta, the improvement I was making in PT was being reversed. He felt it was worth a try to eliminate  the possiblility of this drug causing me problems.

Next Tuesday, after I see rehumatologis and get my Fall/Winter knee injection, I will begin the 'weening' process of the Promacta. This is a dangerous drug and can not be stopped 'cold turkey'!

I also, talked to my neurosurgeon via Health Loop recounting all I have forementioned here. He wants to 'see me'. The earlist I can do that will be next Friday 16th at 2pm at the Physicinan's Building of Stone Creast Medical Center in Smyrna.

When I know more I'll let you all know via e-mail.

Until my next visit on Novemeber, 16 th.

Today was only a lab visit so just a finger stick and no visit with doc.  My platelets had dropped down to 44,000 per micro liter from 74k pml. I think the Pensaid that was used to help my sprained knee was the culprit.

I see doc the first week in October. So, I'm hoping they hold  at that level for a while.

After a 3o minute wait. I was summonded back to the lab for vitals and a venial blood draw to check liver function mostly, a full CBC.

Well, today was a good checkup. Doc said this sometimes happens when certain drugs that are taken for long periods are stopped for a few months. And, then restarted.

My platelet count was up from 39,000 pml  to a whopping 72,000 pml !! How's that?  I haven't seen that from any med other than the NPlate before I developed an allergy to over a year ago.

We discussed the loss of my high risk health insurance at the end of this year because I just don't have any more money for it much less the full cost of health care. He said we'll discuss that further in a couple of months.

For now, I return monthly for finger sticks only untill the end of the year.

My recovery from the ACDF cervical spine surgery seems to be coming along nicely. Incision is really looking good...smoothing out very well too.

Until September  8th...

After being weighed, temp, blood pressure taken. It was the usual finger stick. The tiny vial was put into the machine. And, soon

the day's platelet count was talleyed.  The little miracles workers were up from several weeks ago when I had made the mad dash to my rheumatologist for the cortisone knee injection. I'm now up to 39,000 per micro liter.    God only knows what they were that morning at 4am.

Promacta  has only a five hour effectiveness time before it starts to wear off and platelets begin to fall. And, platelets are at their highest in the morning hours because they are fresh and haven't yet been used or in my case quickly destroyed.  This is true for folks who have a normal autoimmune system and don't have platelets destroyed as soon as they are released into the body from the bone marrow where they are made.

Doc did say that my next visit would be a veinal blood draw for a CBC to check on my liver function since Promatca can stress the liver a bit. In my case it takes up where the spleen leaves off. And, I don't have a spleen anymore.

Anyway, I told Doc that it pays to take a break. He grinned and chuckled. We chatted about the cervical spine surgery I had underwent just two months ago. Swallowing  pills was the topic. I told him I had weaned myself off the applesauce on all but one caplet. And, that one will have to be crushed and mixed with apple sauce for as long as I take it. Which could be life long. All the others I seem to manage. Even the larger capsules. The Tylenol caplets are cut in half and I swallow them. They are hard and a bit uncomfortable  to swallow due to the titanium plate screwed into my vertebrae . The 'pipes' as I call them are flexible and ribbed but the metal plate inhibits that in the area it is near. So, I drink lots of water and try to relax. Praying that this will continue to be successful. It's more convenient to swallow the pills. I did find a chewable adult  multi vitamin from the makers of what we take. It's tasty and fun. 

Star was busy when I left . So, I don't have the schedule of my August appointment. She said she would mail that to me.

So until next time...