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Posted 6/17/2008 10:34 AM (GMT 0)
     Hi everyone!

 

eyes   eyes eyes I went to get 3 month Lab work today. I've been on the net for about 6 hours trying to figure out the Highs and Lows. Hopefully someone can help me out. Generally it looks pretty good. No major changes. My ammonia has come down to 61 from 120 which is still high but much better I think.

          My platelets continue to be low 133. Eos is higher than last time at 5.6 which I assume from what I have read is an indication of some type of infection. My protime also continues to be highat 13.2. I feel fine I am more concerned about the Eos/platelet connection, if there is one.

          Would appreciate any knowledge anyone has to offer. Hope you are all well . yeah yeah yeah june  confused OH!! Just remembered my MELD score continues to be 9 great news.

Posted 6/17/2008 12:07 PM (GMT 0)
June

I wish I could be helpful to you but I really have no knowledge about the Eos/platelet connection. Great news about your MELD score though. Hopefully someone will come along that can give you some insight. I certainly understand the frustration when you are trying to find information and it somehow eludes you. Good Luck

Lucy
Posted 6/18/2008 5:05 AM (GMT 0)
Hi June,

I'm glad to hear that your MELD is stable. I can't help with the Eos/platelet connection but can share what my specialist told me about my low platelets. It was his opinion that either I wasn't making enough platelets, which was discounted after a bone-marrow test, or the platelets were gathering in an enlarged spleen, which was the case for me. The back-pressure from my cirrhosis enlarged the spleen, which seems to become the dance club for platelets. They would rather hang out and party in the spleen than be out working, helping me clot.

Do you have an enlarged spleen? Have you done a bone marrow test? (if so, you'll remember)

Sorry not to be any help. I am rooting for you to be better every day.

Be well, John
Posted 6/18/2008 8:31 AM (GMT 0)
Lucy / John,

Thanks for the reply. I have an appointment next week with my pc. He should (know) what is going on. He is not very informed on liver disease and I have White Coat Syndrome so I am not to thrilled about having to change dr.s . I only go when it is absolutly necessary or for my prescription refills for Hypertension.

I did not get a bone marrow test when I was eveluated. The spleen according to biopsy, MRI and CT scans has been of normal size.

I think I will read again on the Eos because I read something about infection. If that is the case it may be due to the foot surgery I had six weeks ago. The heel spur incision ,which had closed and seemed fine , developed a pocket of pus which I drained out last night, now I have a small volcano looking hole on my heal. Doesn't really hurt , then again I have a very high tolerance for pain. Two weeks ago the bunion incision started to itch really bad then I noticed a few white strings coming up. The nurse had told me they were inner incisions and would disolve inside, but I could either cut them or tug them out. So I decided to tug them out and they were quite long . Then the insision popped open on several spots, so I used the butterfly stitch on them . Thats what they had before, but it's been a few days now and they still haven't closed.

Again I have an appointment with the podiotrist week after next. So I think I'll just wait and see. I have plenty of stirle bandages , gauze and topical antibiotict so I can wait. Thanks for the reply anyway. june
Posted 6/20/2008 10:32 AM (GMT 0)
My insurance nurse case worker just happened to call me today to see how I was doing. She was very helpful , more so than the transplant coordinador who forgot me once I got the eveluation and was listed. Anyway she told me what john said the platelets are sort of jumping off a sinking ship. The EOS was ,what I thought it was an infection or a virus .She said I probably have an infection from the foot operation or sinusitus Which I do have right now. The foot surger? I spent a few hours pulling out the stitches that are soposed to disolve under the skin but didnt disolvol.
Posted 6/20/2008 7:49 PM (GMT 0)
June

I am so glad that you got some answers and I hope you are getting that infection taken care of. My personal experience with insurance people hasn't been that positive so I am really surprised to hear how helpful they are with you. Sad though that your transplant people aren't as on the ball. Good luck on your upcoming appointments and keep us posted.

Lucy
Posted 6/21/2008 2:53 AM (GMT 0)
Hello June,

Hope your feeling good tonight. I just wanted to tell you to stay on those transplant people. Don't let them forget that you are still waiting. You know what they say ........out of sight out of mind. If you have the coordinators email, drop her/him an email. Ask about any test results,your meld or anything. If you don't have their email then call her/him.

And I may just be paranoid, but I didn't trust my insurance coordinator as far as I could throw her. I didn't give her any information about my husband that she couldn't get through the doctors,lab reports or hospitals. Insurance companies don't want to cover transplants.......too expensive. They try to find anything that may disqualify a person for getting a transplant. But that is my opinion June. Just be careful when you talk with her. eyes

Take care...........thoughts and prayers..........
Posted 6/21/2008 5:14 AM (GMT 0)
Hi June,
P G has some great advice for you. I wish someone had told me the same thing about staying in touch with the coordinators and even Terry's liver specialist. I guess I allowed them and everyone to drop the ball on Terry, because I relied too much on them to do their own job.
Keep calling or sending them e-mails. Send them a picture of yourself or a pretty flower picture or anything that will remind them of you. Send something to brighten their day, or make them laugh.
I might sound sinical, but I believe that the insurance case worker nurse will be nice to you just to get you to say anything that will help them to not pay for your treatment or transplant. Please be careful what you say to her. Just tell her, " I don't know." Remember, it's her job to find out if you are non-compliant. Don't tell her that you pulled put your own stiches and may have caused an infection, even if the infection was already there. Listen to Pink Grandma, she knows what she's talking about. She only feels paranoid. I went through the same thing. She started asking me so many questions that I got confused and started talking too much. Then I just hung up on her. Said I had to go take care of my husband.
Don't do their job for them. The only people you need to stay on top of are your Dr's and care coordinators. I sure wish I had done a better job of that. It shouldn't have to be that way but it is. I guess I'm just mad at myself, but I know I just wasn't educated enough to know better. I myself have always been very healthy, so I hadn't had much experience with the medical profession or insurance companies. I have gotten a big dose since I started caring for my parents and my husband. I still learn something new almost everyday. I still feel like they give me a "back door" surprise every other day.
I still don't understand why everyone else gets paid except for the caregivers. It's just not fair!!We save the government a lot of money.
I better stop here. Maybe someday I can fight for the caregivers.

Have a great week-end June 17,
Carol
Posted 6/21/2008 7:44 AM (GMT 0)
Hi, Everyone is right. I call our coordinator so much when I say hello she knows exactly who I am. I speak to her weekly even if to say he had a good week. I also make them do alot of leg work outside their job. I will say she is the best person to deal with. I feel very lucky with her, when we use the ER in our town she gets the call to set up transfer and tells the ER what she wants done before he gets in the ambulance, the local hospital even likes her. She faxes updates to our family DR I did have to initiate the way I want things. Remember you only have one patient they have many, always be your own advocate and probably a little more cool headed than me. I ahve already fired Joslin clinic they are no longer allowed in my husband hospital room, it took tossing 5 of their DRs out before they got the idea, nice didnt get me to far. Course now I have to find a new DR for diebetes for him. Our local ONE is an even bigger dip. Her I babble... sorry
Sue
Posted 6/21/2008 11:49 AM (GMT 0)
Just lost second half . Time to Give Up. Will ask my husband to get their E-Mail and let him know what I want. Then he can edit. I am very upset with all three cordinators. They never even answered their voice messages. I made about 8 long distances that day. So if I were to sent them a card right now WHO KNOWS what it would look like or say , I can tell you this much it would'nt be pretty. So I have to cool down. You would think they would have called me by now to let me know about my labs and meld. I even got my labs in the mail yesterday, eventhough I already had them. Theirs were faxed 1 hour after I was there. Enough Rambling. Will take advice to heart. Thanks june
Posted 6/21/2008 6:21 PM (GMT 0)

June, We discovered our hospital has a patient web site and I log in and check all labs biopsy results etc. from day one 12/06/2000 I also submit for renewing prescrptions and e-mail the DRs or coordinators. This has become a popular thing so check your hospitals web site. Its worth a shot!

Sue

Posted 6/22/2008 8:51 AM (GMT 0)
Sue

Thats a great idea about hospital . That way it would be easier to compare results. As far as prescriptions I already get my prescriptions from a mail order company. They keep track of all meds I've taken since I started ordering from them, Can order on line , they keep track of interactions, let me know when a priscrition need to be ordered or prescription renewed. I can access all information on the web. So far So good . I've been ordering from them since I retired four years ago. Great savings,and they send me a three month supply of meds. Thanks Sue. june
Posted 6/22/2008 9:01 AM (GMT 0)
Oh , it looks like I lost the first half of one of my posts. It was about the insurance nurse social worker. I just asked about EOS. She said it is usually due to an infection. I asked her if I could have had one after the surgery. (I didn't mentiong I had pulled strings. Glad I did it looks and feels much better. She told me Eos could be high due to a sinus infection or a virus of any kind. I asked her why I had been precribed such high doses of zinc sulfate. She said I was used to boost immune system and prevent further liver damage. Thanks all for the great advice. Concerning the insurance nurse I will take your advice and be careful what I say. june
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