[KarolH]

Good Morning everyone,

Long story short I am now getting ready to go back to my Hematologist because a lot of my nutritional numbers are dropping dangerously low so now my GI doctor is sending me to the blood doctor.

Anyway, I decided to go back 3 years and take ALL OF MY BLOOD TEST RESULTS and put them onto a Excel spreadsheet so that I can look down and across columns to see how the numbers trend, up or down.

It took close to 6 hours to do this and it consumed most of last Sunday but was well worth it and something I suggest we all do if we can find the time and the ambition to do it.:lol::lol::lol:

After I was done I was able to sit back and take a look at all of my numbers in front of me. I realized how my nutrition numbers have dropped slowly over the last 2 years and for example, now I have protein in my urine and my Bun/Creatinine has slowly gone up, now it is at 25. It allowed me to bring up certain things at my next Rheumatologist appointment that I would not have known if I did not place all of the numbers on one sheet.

Feel like I am rambling on and on here so I will stop but hope I made a good point. I am amazed now when I am able to see one entire picture how things have changed instead of having to pull out 100 sheets of paper to compare. I think when we have to do this we miss alot, and so will the doctors.

Just some food for thought and sure hope you all have a great day!:wink2::wink2::wink2:

 

[chickadee]

I don't get copies of my blood test results. I didn't think my doctor would give me a copy...I should ask then if it is ok to get a copy from now on. Thanks for the good advice.

chickadee

 

[KarolH]

I don't get copies of my blood test results. I didn't think my doctor would give me a copy...I should ask then if it is ok to get a copy from now on. Thanks for the good advice.

chickadee

By Law it is your right to have copies of EVERY TEST done on you weather it is blood work, nerve studies, mri's of the brain, eye tests, whatever. I always ask for copies and anytime I am having blood work done I write on the script at the bottom to send a copy to my house. This way the blood test results come right to my mailbox instead of me running out to get them. Keep this in mind moving forward.:wink2::wink2::wink2:

 

[Katharine]

Yes chickadee, you absolutely must keep copies of all blood tests. It's essential if ever you change docs and also means you can keep an eye on things as Karol is doing.

Karol - you have me exhausted just reading that. It does sound like a good idea but my oh my, I can't imagine the work involved!!!


Katharine

 

[debatat]

Karol, what a huge amount of work!!!!! Interesting what results you got from doing it though. I hope your next appt goes well.

Deb x

 

[greenhaggis]

Wow Karol!

What an interesting idea....but what dedication to sit there and action it!

 

[ceenic123]

Karol, you have done a great thing. It is a great idea. Just don't know if I can figure out how to do it.:hehe: That really does take some dedication. Thanks for sharing. Hope you all are doing well.

 

[KarolH]

My husband is the computer guy in this family. I have about zero computer smarts and that suits me just fine.:lol::lol::lol:

He set up the spread sheet on the computer for me and all I did was type in numbers and names of particular tests.

If you have someone to read you the numbers while you type it in then it will be much quicker. I did this alone with no help. Hubby was out for the day. I also have a TREMENDOUS AMOUNT OF TEST RESULTS FROM 3 YEARS PAST.

My guess, or should I say my hope is that most of you don't have so much.:wink2:

 

[oesa]

My nephrologist can graph my lab results right in his office - we're moving towards electronic health records, which makes it easy. You're right, it is important to be able to see trends in your lab results, and graphs do that nicely! It also helps me look more at the "big picture" and trends in my health, rather than focussing in on individual test results, which is much better for my peace of mind....

Lisa

Lisa

 

[alimonkey]

I have never been given a copy of my test results. Even when I've asked for them. The only reason I found out the value of my ANA was because I looked over my rheumatologists shoulder at the computer screen. I don't even know what some of the test she performed were, I wasn't even told. I feel very ignorant about my condition

 

[KarolH]

I have never been given a copy of my test results. Even when I've asked for them. The only reason I found out the value of my ANA was because I looked over my rheumatologists shoulder at the computer screen. I don't even know what some of the test she performed were, I wasn't even told. I feel very ignorant about my condition

Ali, please don't feel ignorant but instead now educated about YOUR RIGHT to your health records. Tomorrow phone your doctor and tell them you want a copy of all of your records for your own personal file. They may charge you a fee, not sure, guess it depends on what your relationship is with your doctor.

Whatever the case YOU have to ask for YOUR OWN records and know with confidence you are 100% entitled to have them. I put mine in a 3 ring binder and it really has worked out well. Also, any time you have a test done tell the tech doing the test you would like a copy mailed to your home.

I am in the USA, not sure where you are, but over here that is all it takes. I do not need to get my doctors permission to have a copy of ANY TEST, ...it is my right. I hope this helps some and if you do this moving forward you will learn more and more about YOUR illness.

Knowledge is Power, especially when it comes to your own health.:wink2::wink2:

 

[lin]

i dont get copys, but i have a book with them all in, the nurse writes them in each month when ive had the results back, im sure thats the same thing? have to have the book here if your on immuno meds.... well thats how mine do it......... Lin x

 

[Clare.T]

Ali

There should be no problem getting copies of your test results and also the consultant's letter to your GP. In fact I believe the hospitals have to send you a copy of their letter to the GP, some new guideline. We are legally entitled to our medical records ! If there are certain sorts of references to third parties in them, those might have to be deleted to safeguard the others' data protection rights.
You ask firmly for them and then asserively insist saying you want to be better informed about your case.. My GP just prints anything I want off the PC. I always make a point of looking at the screen while he is - if it happens to be a bit out of my eye line I move the chair unless he alters the screen angle, as he usually does.

Karol, in the UK you will not be sent a copy of your blood test results - they go only to the GP. I also think it is a bad idea to get them before the doctor and or specialist has had time to review them, until one is a very experienced patient. It mostly leads to worry and unhelpful speculation and false conclusions.

Cheers
Clare

 

[KarolH]

Karol, in the UK you will not be sent a copy of your blood test results - they go only to the GP. I also think it is a bad idea to get them before the doctor and or specialist has had time to review them, until one is a very experienced patient. It mostly leads to worry and unhelpful speculation and false conclusions.

Your right Clare, especially if your new to Lupus but on the flip side if you have your results and are able to educate yourself about your abnormals before your visit with the doctor then I think you can have a more detailed conversation about treatment and also be on the same page, understand what the doctor is talking about and walk away from your appointment with a better understanding of what is going on. Personality also plays a role here too, if you are the type to worry more or freak out with an abnormal test result. Me personally, I never get a normal test and am just used to things being abnormal so I just shrug it off and move on.

I did not know in the UK you can not have copies mailed to your home......I learn something new everyday. Thanks Clare for sharing this with me.:wink2:

 

[spd]

Alimonkey, I am not sure where you live, but if you live in the United States you are entitled to copies of all your medical records. Most states have laws as to how long doctors/hospitals have to keep records. Doctors in our area have to keep for seven years I believe and hospitals 25 years. I hate to hear you feel ignorant about your condition. You could ask for copies from all your doctors. (They may charge you to copy. I believe by law they must at least provide you with one copy without charging but I have no idea if this is correct or a bad memory.) Second, I would suggest you make a long list of questions you would like to ask with ones as simply as "Can you please explain to me my diagnosis?" and take it and a friend with you to your next appointment. Then hand the list to the doctor and go through each one to help you better understand what your specific conditions are and how the doctor plans to treat each condition. Last, I would read (but not if it is going to cause you to self-diagnose or be depressed) about anything you don't understand to help educated you. I think we are are best advocate and it is hard to ask intelligent questions if you don't even understand the terms they are throwing at you. Sometimes, I feel like I am learning a new language. And many many times I ask the doctor to stop and "put it in English terms" when they start using all that medical jargen. These are just things I have found work for me. I have been sick a long time and was diagnosed with lupus about six years ago. It really helped me because it was hard to understand anything they said because everything was so new and were all terms/words I had never heard before. Not to mention that doctors can just be dang hard to talk to anyway. So, I would encourage you to educate yourself, ask questions and have someone who can help you understand what you were told after the appointment.

Take care alimonkey!

 

[debatat]

I have to laugh at clares post :lol: I am in the uk as well, and I always look at the computer screen when the doc does!!!! :rotfl: Now they move the screen for me to have a better look!!!! :rotfl::rotfl: I don't know why the docs try to hide things, it is our bodies after all!!!! :hehe:

Deb x

 

[alimonkey]

I was only ever told I'd had a positive ANA. It wasn't until I'd googled it that I knew any more about it, and the fact that there were different titres etc. They didn't tell me about the test or what it meant. The consultant I first saw in outpatients merely said that he thought I had some sort of autoimmune condition. At the time my most worrying symptom was my numb hands. The consultant discharged me back to my GP for further referral and his letter was at least 6 pages long. My GP wrote to me saying come and see me and when I did, she just looked at my file and said I'm referring you to a rheumatologist. I asked what was in the letter and all she would say was I'd had positive blood tests for autoimmune disorders that needed to be investigated by a rheumy. That was that. I felt very alone and isolated at the time, and very frightened. I'm OK now, I've learned a bit more. I have my first follow up appointment with the rheumatologist next week and I'll be asking a few more questions this time

 

[mother of pearl]

nephrologist

Hi Karol,I am also from New Jersy Gibbsboro I have kidney involement and I have a great nephrologist right here in Voorhees His name is Anthony Brown My first visit he spent a hour and a half with me very thorough.let me know if it comes to thathe put me on cell-cept 20000 mgs a day and feeling much better. Take care Lori

 

[KarolH]

Hi Karol,I am also from New Jersy Gibbsboro

Your my neighbor, Washington Township here.
Welcome to the boards.
I am pre-occupied at the moment so not posting much but wanted to say welcome and hope to get to know you better.

 

[dixy]

Alimonkey

ask your GP for copies of all letters about you. Then u will b able 2 read the 5 page letter about u.

Mind you if they r anything like mine it will take time to understand them. I asked tmy pharmacist in Tescos to explain what it meant which helps

Blood tests lol well I asked 4 copies of mine when I was first DX ended up will pages to fill a book lol.

Dont think Im dedicated to spread sheet them though.

dixy