Collecting my med info - What to ask for?

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JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 7/17/2008 9:46 PM (GMT -7)   
Hi everyone,

First, a thank you for being here, helping and caring. As an ESLD patient without a caregiver, it means a lot to me to have a community of friends who understand.

Until now I have not regularly collected copies of my bloodwork and test results. Having had Hep A, B and C (untreated) and now having a MELD of 14, I am beginning to understand how little I have and how little I understand about those tests, etc. So it's time to collect copies of what the doctors and transplant team have that may be meaningful to me as I learn to monitor my condition.

So my question is: In your experience, what are the most meaningful results, or reports, or ??? that you suggest I should be collecting? I have a young doctor living next door who is willing to research and explain what I collect, but she does not have the knowledge / experience base to guide me in deciding what is most meaningful. Or do I simply request everything? Knowing how much has been done, that seems like overkill and more info than I could process.

I'm not looking for medical advice here, just some feedback on which stuff has been helpful to you. Any suggestions will be appreciated.

Thanks in advance!!

Be well, John
I have to get up the creek! Now where's that paddle?
Mind-fogged again.


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 7/17/2008 10:09 PM (GMT -7)   
Hello John,

I got all copies of my husband's blood work. In fact I had them faxing them to me at the same time they would fax them to the doctors. I had one of the blood technicians explain them to me . I was especially looking for his ammonia levels. If I saw that they were rising I would up his lactulose. But there is a lot more of important information in the blood work that tells the doctors how your liver is doing. If you have a doctor next door she can explain the results to you. And you can ask informed questions to your doctor. They are more libel to listen and talk with you if you know what your are talking about.
I also got copies of most of the CD's of the scans. I took everything to every doctor appointment just encase they didn't get a copy of the results for some reason. My husband had no less than 6 doctors that he was being seen by during his last year.

Hope this helps..........thoughts and prayers...... smurf
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 7/18/2008 6:01 AM (GMT -7)   
John

I always get copies all my blood tests that have been preformed and I keep them in a folder with the latest ones on top. I also keep copies of all results of any other tests that have been preformed, such as endoscopy's, biopsy's, etc. I also have copies of all my GI docotors reports from my office visits. Although I only have those because I go to a hepatologist in another state (five hours away but that is another topic) and he specifucally asked for me to bring those so that their coorispondance is kept updated and they are on the same page. I also have multiple doctors and as PG stated they sometimes don't have the reports or have a "new computer system" and can't find it. I keep all three things separated in folders as it is helpful for me not to have to dig through this ever growing pile of stuff for a specific test or report. Also I want to see my own results particularly of my blood work so I have an idea of what is going on myself. The last time I had an endoscopy the anethesisologist (spelling) wa concerned regarding some of the high levels. However when I looked at them they were "my normals" so I have found it helpful that I know what they are. I also have my MRI films just in case they are ever needed. My opinion is get as much as they will give you because you never know when it will be helpful.

Lucy

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 7/18/2008 6:02 AM (GMT -7)   
Ok I just read my own post and can't believe all the miss spellings. So sorry about my typing it has gotten horrid.
Lucy

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/18/2008 12:39 PM (GMT -7)   

John, this is a good idea.  I recommend all blood work, dating from the time you were first diagnosed to present.  Next, reports of all the tests and scans that have been done:  CT and MRI, X-rays, biopsies, EGD, etc.  If you can obtain actual film of scans, it is helpful.  However, it is done on a "loan" basis, as the facility that did the scans legally owns them.  I have never heard of them put on CD, but in that case it would be a copy and okay to keep.  Office visit notes are not necessary, unless you want them for your own edification.  You would then likely need your doctor friend to interpret the medical jargon.

All of the above should be put together with the latest on top, going backwards in succession.  I like Lucy's idea of filing the 3 categories separately.

In the first year or two after my diagnosis in '93, I kept all blood work results.  Since it's now been 15 years since my initial diagnosis of hep C, I don't retain copies.  When I go in for post-op visits following blood work, scans, or surgeries, they tell me the most important results.  My blood work these days is very good, though of course the liver enzymes are always higher than normal.  However, they've never been as high as 3x the upper limits of normal, which I was told is a red flag.  Blood work is not always indicative of what is going on in the body; thus, the importance of scans.  I do get operative reports and post-op visit notes.

If you have alpha fetoprotein done with your blood work, it would be good to keep copies of those, as it is a cancer marker.  In my case, though, it never elevated much at all.  Also, MRIs done with gadalinium contrast will also show cancer, so you definitely want those reports.

I hope this helps you.

Big hugs,

Connie


Post Edited (hep93) : 7/20/2008 9:43:08 PM (GMT-6)


JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 7/18/2008 10:14 PM (GMT -7)   
Hi Pink Grandma, Lucy and Connie,

Thanks for the feedback. I am lucky that most of my tests have been at Yale / New Haven Hospital and ordered by just a few doctors so it shouldn't be too much of a job to get all of the results. I have a 'whiteboard' mounted on my bedroom wall to remind me of what I need to do over the next week so I am now officially reminded. Of course I need something to remind me to look at the 'whiteboard'.

The organization tips are helpful too. And I don't need to worry about 'films' since the hospitals here put everything on CD. Many of the scans are e-mailed to specialists (in India, I think) for interpretation so the digital versions are handy for them. I was in a car accident in 2006 and got my spinal scans on CD. It was really easy to zoom in on details. Technology is great until something gets erased.

I want to have a busy day tomorrow so I'm trying for early sleep. Tonight's music is 'old blues', with remastered original recordings of Robert Johnson and T Bone Walker.

Thanks again!

Be well, John
I have to get up the creek! Now where's that paddle?
Mind-fogged again.


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 7/20/2008 5:48 PM (GMT -7)   
John, Check with your hospital as it is not unusual in New England to have access to labs and other tests also some short Dr notes through the hospitals web site. Beth Isreal deconess in Boston gives patients full access via a special link from their website. I follow all labs for my hubby and labs are the most confusing at first but also the most important for gaging where your at. Good luck John
Sue
When I started counting my blessings my whole world turned around.


JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 7/20/2008 11:08 PM (GMT -7)   
Hi Sue,

Thanks for the tip. The fact that no doctor or nurse is without a tablet computer shows how much is automatically on-line. I'll see what access they provide for me.

I hope that Doug is generally doing well. And I trust that you are taking care of yourself with a little R&R.

It's almost 2am and I just got back from the new Batman movie. Some friends said that I needed to get out and they had comp passes to the movie and sprang for popcorn (no salt). After seeing it, I now understand why Heath Ledger had problems getting free of the role. He definitely put his all into it.

Please take care and be well, John
I have to get up the creek! Now where's that paddle?
Mind-fogged again.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/21/2008 11:05 AM (GMT -7)   

John, I'm so glad to hear you were able to get out!  Everyone is saying what a great movie TDK is, and how fantastic Heath Ledger is as The Joker.  I'll probably have to wait until it comes out on DVD and rent it from Netflix, but I'm patient.  :-)

Smiles,

Connie

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