Saw my Lung Doctor Today

  I've had so much blood drawn this month!  The second time this month, was for seeing my lung doctor today, to have my ACE levels checked.  This is down.  My calcium level has been going up all year.  January it was 9, in July 10.1, and earlier this month, it was 12.4.  I had a PET/CT scan in August just before the start of the school year.  Here are the results from that: the lymph nodes in my abdomen are better (the swelling have decreased), the lymph nodes are still swollen in under both of my arm pits and in my left groin area, and my spleen is bigger than it was  in February.   I have been getting headaches off an on since June.  I have been told to keep track of them, because people can have neurosarcoid.  I do not have any other symptoms for neurosarcoid.  He was debating on scheduling me to have an MRI on my head/brain.  As of now, I am not getting an MRI.

  I will be taking predisone for three months.  I will see this doctor on Martin Luther King Jr. day.  At that time, will talk about some kind of scan, because that is the best way to see if there are changes or not.  I am hoping that the side effects are not that bad.  One of the major side effects is gaining weight.  I have lost some weight, and do not want to gain a lot of it.

  I had to get a flu shot this afternoon, because of going on steroids.

Saw the Kidney Doctor

  I had an appointment with the kidney doctor today.  My oncologists office set it up, and told me the appointment was for 10:30 am.  I took the day off from school.  I get there, and was told my appointment was for 2:30 pm.  That made me mad, since I had training from 4-6 pm.

  I went back this afternoon.  I had blood drawn on Tuesday, and he hadn't received those results yet.  I do not know what my cretin level is currently.  Even back in June, it was slightly elevated.  My calcium level is high, over 12.  There is two kinds of vitamin D in your body, so he thinks the one kind will be high.  I am going to  have blood drawn tomorrow morning and will have a lot of things tested.  The theory is that my sarcoid is messing with my kidneys.  I am still dehydrated.  As of now, I will see him again the week of Thanksgiving.  He is going to talk to my oncologist and my lung doctor.

Friday's Update

 My weight is the same as yesterday's.  Labs were drawn and they were looking at two different things.  One was good, and my cretin level went up from 2.25 to 2.26.  I ended up getting two bags of fluid this afternoon, that makes a total of eight bags of fluid this week.  As soon as the second bag was done, boom, I became really tired.  I am cold.

I will have labs done again Tuesday afternoon.  I will see the kidney doctor next Thursday at 10:30 am.

Thursday Update

  I received two more bags of fluid this afternoon.  Yesterday I didn't get cold.  But, boy am I cold this evening.  I did get cold at the cancer center this afternoon.   Mom started a fire in the fireplace and it feels good to sit in front of it.  My cretin levels have dropped down  to 2.2.  I will have to go in tomorrow afternoon to get another bag of fluid.  So, my port is still accessed.  If I need more fluids after tomorrow, I will have to go to the emergency room on Saturday to get more fluids.

  I now have to see a renal doctor.  Nobody knows for sure what is wrong.  Do I have a sinus infection or the flu, which caused me to become dehydrated, or is there something else going on? 

  Again I got to see my favorite nurses today!

Kidney Problems

    Monday afternoon, I received three voice mails from my oncologist's office.  My cretin level was 3.9 Friday morning.  My oncologist thought the blue dye from the CT scan caused this issue with my kidneys.  They wanted me to receive fluids.
   Yesterday, I was scheduled to have my port flushed and blood drawn to test my ACE levels (sarcoid). My cretin levels were 3.1. I received two bags of fluid.  I was told that I had to get an ultrasound of my kidneys.  I had that done at 1 pm today, then went back over to the cancer center to received two more bags of fluid. 
   Now my cretin levels are 2.9. I have to go back to the cancer center tomorrow for two more bags of  fluids.  They are getting me in, so that I can still keep my dentist appointment at 4 pm.
  The highlight of my day was seeing my two favorite nurses.
    Still having headaches, stomach ache, and feeling a bit nausea. 
  Nobody knows what is going on with my kidneys and what has caused this.

God Thing

    My last  post, I talked about how I haven't been feeling well, and it has been three weeks of this.  I saw my oncologist this morning, and I can say I  was actually looking forward to seeing him.  The appointment got moved up from the 29th to this morning.  I explained everything that was going on.  I had blood work done.  My vein was accessed for drawing blood.  White blood count was 5.1, normal.  Platelets okay, and my red blood count was down to 3.6, making me anemic.  My doctor made a comment that maybe I am now suffering from migraines.  He said to drink a bit of caffeine when I get a headache.  I have a headache most of the time.  He did request a ct scan of my head/brain.

   I go see the scheduler, she said it could be up to three weeks for the CT scan.  I asked if by chance there was an opening today.  She called, and City Hospital happened to have one this afternoon.  That is so God.  I am so glad it was at City Hospital.  I was told to drink a lot of water, and that I could have lunch.  My appointment was for 2 pm.

       No issue accessing my vein this morning.  The nurse tried my arm, and boy did it hurt, she flushed the vein, and I complained of the pain.  She flushed it a second time,  then the vein blew.  That area of my arm hurt.  I was not willing to try another vein, so they called for a nurse and she accessed my port.  I had the scan, then came home.  I ended up taking the whole day off from school. 

   Getting an appointment today at City was a good thing.  City hospital is the only place that will access my port for scans that require contrast. 

  I will get the results next week, when I call my oncologist's office.  My doctors are not sure what is wrong.  I hope I can find out soon, so I can start to feel better.  Maybe then, I will start to sleep better.