Not PCa but related to my treatment (away from home)

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smilingoldcoot
Regular Member


Date Joined Jan 2008
Total Posts : 338
   Posted 6/20/2008 2:02 PM (GMT -7)   

I have been taking blood thinner for over 12 years and have to get a monthly blood test to ensure that my clotting time is good.  My normal INR is about 2.5 where normal blood without a thinner is 1.0.  At 6 and above you can start to bleed internally. I actually had them send the sheriff after me once when mine got over 6.

 

Well, being away from home I go to the Navy Base hospital here in Jacksonville and get registered for their lab and have my blood drawn and tested on May 29th.  They send my doctor a fax of the results and his office calls me and gives me instructions.  Well on the 30th the nurse calls and says, “Mr Richard, your blood is too thick.  Doctor wants you to lower your daily dose to 2.5 mg and retest in a week. I had for some time been taking 4mg daily.  I think, no problem as this has happened before and no big deal.  I change my dose and go in on June 6th and have another test and the next day the nurse calls me and informs me that my blood is too thick and I need to go to a daily dose of 5.0mg.  I think and I tell  Debbie, hmmm  I ain’t gonna go to 5.0.  My reasoning is that if the week before 4.0 made my blood to thin what will 5.0 do?  I go back to 4.0 to see what happens.  On June 18th I go in to get another blood test and when I get to the office the male nurse tells me I don’t need to get blood drawn as he has a new machine that will give us an instantaneous reading.  He gives my finger a prick and sticks it in the machine and my INR comes back 5.2.  He says, hmmmm kinda high? Where is it normally suppose to be and I tell him 2.5.  He says his machine is not real accurate over 5 so I do need to have blood drawn at the lab and have it tested.  I do that and they fax the results to my doctor. I realize 5.2 is not good so I don’t take coumadin that evening as usual.  I also called my doctor's office and told the nurse of the reading and that I had been taking 4mg Coumadin daily and she said someone will call you back once we get the results faxed to us.  The next day, Thursday the nurse calls and say my blood is to thick and I need to increase my coumadin.  I say, “wait a minute, they told me yesterday it was over 5.  At first she can’t find a date and then when I say it was done the 18th she says that is what I have and your INR is 1.4.  Well again, having taken this stuff for ages I tell Debbie I am not doing anything and will not take my normal dose tonight (Thursday) either but will go to the hospital tomorrow and research what lab reports I can get my hands on.  I go to the hospital the first thing Friday (today) and find out that the latest faxed report shows my INR is 5.0 and none of the past 3 reading are 1.4.  I have no idea where the nurse got her information but it came close to having me dead. If I had taken 5mg daily of Coumadin for another week there is no telling where my clotting time would have been.  I most likely would have started to bleed internally.  I call back to my doctors office and talk to the nurse who blows me off and says that is what they had and I needed to have them refax the information and they would call me back.  I go to the hospital and ask them to refax the results and they say even though they have received confirmation of their fax they will.  I wait till later in the afternoon, after my treatment abut I do not get a call so before the local hospital closes (we are ahead time wise of home) so I call and talk to someone in the doctors office who knows nothing and tells me they have not received a fax.  I am getting frustrated and tell her I need answers as there is a problem and the hospital will be closing soon.  She takes my number and says the nurse will call me back. A few minutes later the nurse calls and says she has the report and the doctor wants me to stop coumadin for 2 days (I already have), take 4mg daily and retest in a week.  I say, “wait a minute”.  If 4.0 last week made my blood to thin then 4.0 this week will also.  Her response is well that is what the doctor said.  I tell her I want to talk to the doctor and if he is with a patient have him call me back.  She gets the doctor on the phone and after a short pleasantry he tells me he thought I was on 5 and I tell him no I told your nurse twice I was taking 4mg and even that was too much.  After I went thru the scenario of the last 3 weeks he agreed that 3mg was a proper dose and they would call in a script for that amount and told me to retest next Thursday. I am 800 miles from home and I have no idea who is really at fault but I have my suspicions.

 

Doctors do not like patients who diagnose themselves but sometimes it is necessary.  As I said previously, had I blindly taken what the nurse told me I would probably be bleeding internally and maybe even dead.  I told Debbie at least she would be financially taken care of after the lawsuit. We have to learn our bodies and how they react to what others want us to put into or do to them. The morale of this tale is that we have to be our own best advocates.  No one will take as much care of us as ourselves and those who love us.

 

Thanks for letting me ramble and vent!  It is good for my soul.

 

Richard mad


Retired USAF Richard & Debbie on The Shores of Toledo Bend Lake Louisiana
Biospy 1/10/08 Gleason 10, Stage T1C  8 of 12 samples positive all Less Than 5% 
Jan & Feb & Mar all tests clear
MD Anderson = No surgery and No Proton only Hormone and IMRT
Contacted with Loma Linda and UFPTI in FL
Started Treatment at the U of Florida Proton Therapy Institute in April 2008
May 2, 2008 LUPRON & Casodex
IMRT to started  5/27/2008 Will get 42 treatments 19 IMRT and then 23 Proton
Turn Stumbling Blocks into Steping Stones and Keep Smiling
Our Journey is on WWW.GLEASON10.COM
 


VaFan
Regular Member


Date Joined Mar 2008
Total Posts : 203
   Posted 6/20/2008 2:34 PM (GMT -7)   
Wow, that really does show we need to know our own bodies. I worked for doctors and hospitals for several years (receptionist and assistant) and I know how sometimes the patients just don't get taken care of. I even know what I have to say when I make an appt for my daughter or husband to make sure either they get in right away or are given the right meds. If my husband gets a sinus infection or such, I make sure they know how easy he goes into pneumonia and then they get him in right away. Sometimes you just have to do what you have to do. Push again and again to get what you need. I'm so glad you insisted on speaking with the doctor as we all should if not getting the answers we need.
Glad you vented!!
Cindy
Age 51 Kent Cindy 49
January 08 PSA 5.2 round of antibiotics went to 4.3
February 08 another round of antibiotics went to 4.2
March 17,08 had biopsy, 2 days later told cancer was on
one entire side of prostate.
Gleason 3+3
Doctor thinks its best to get the whole prostate with Perineal  Prostatectomy.
Surgery scheduled for this Thursday April 10th. Only took 1 1/2 hours. In recovery 1 hour.  Both nerves were spared.
Home 4-11. Cath out 4-22. Incision looks completly healed on the outside by 4-25.  Incontinence "a thing of the past" as of 5-28
lst PSA 0.04 June 3. YAY!!!
viagra up to 100 a day and feeling some change. Keep our fingers crossed.


hopemylove
Regular Member


Date Joined Apr 2008
Total Posts : 65
   Posted 6/20/2008 2:41 PM (GMT -7)   

Richard--

I am glad you are alrignt and that you know your own body and are strong enough to advocate for yourself. Larry (my husband) was scheduled for his second round of chemo this week and his urologist ( who has been giving us an attitude since we started going for chemo) sent us to the hospital to have his kidney tubes checked. I asked the Radioliogist when we got to the hospital, if anything he was going to do would interfere with the chemo and he said that if it were him, he would not touch the tubes until after the chemo is completely finsihed since the tubes are helping the kidneys function and Larry needs the kidney (the right one has stopped functioning) in order to receive the chemo. He said that although he would hope nothing would go wrong--there was no guarantee. If we had not asked, Larry may not have been able to receive treatment this week. I use to think the doctors would have more medical information than me, but I now question everything.

Good luck with the rest of your treatment.

Karen eyes


Karen--New York
Husbands Info:
Age of diagnosis--62
2/28/08--PSA 279   DRE--positive/rock hard
Flomax and Casadex started
Biopsy--3/7/08--187cc--Gleason 10--12 of 12 positive--Perineural and LV invasion identified
T4 bone met.--hydroureteronephrosis/right kidney
3/28/08--Lupron Inj. started
4/7/08--Zometa IV started
5/15/08--PSA 12
5/20/08--Tubes placed in kidneys (through back)
5/21/08--diagnosed Neuro Endocrine Prostate carcinoma
5/28-30/08--1st Chemo
 
 
 


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 6/20/2008 4:36 PM (GMT -7)   
Smiling,
A perfect example of the wisdom of a person making sure they are fully informed and know their own body. There is a world of difference between diagnosing and treating yourself and being fully informed about an illness you may have and its treatment options. If you were not so on the ball and questioning who knows what may have happened. You suffer, somebody says "oops, sorry about that". Often when a few different professionals are involved in a treatment oversights occur and mistakes can be made.
Well done and vent away.
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07----4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.1 undetectable

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