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Posted 1/7/2011 11:48 PM (GMT 0)
Hubby goes in for labs on Monday. Then we see his GI on Wednesday to go over results. I find myself a week or so before tests and up until results are in to get very nervous and worried and anxious. I have been making hubby crazy because I have been extra emotional, and he feels that every time I look at him I am examining him (it's true, I am, I can't help it).

What do you caretakers do or patients what do you do to calm nerves before appts/tests?

Emma
Posted 1/8/2011 12:17 AM (GMT 0)
I've had more lab tests than most, between Hep C that was discovered in 2001, interferon/ribavirin for 48 weeks in 2004, a cerebral hemorrhage in 2005, later that year being tested to see if I was healthy enough for a liver transplant. Then I received a transplant in 2009. What has worked for me is trusting that lab people, nurses and doctors were putting me through mildly painful tests in order to prolong my life. I understand that not flinching at the sight of a needle and being cooperative makes things go more quickly,with less pain. I've had one test that was very painful, an arterial blood draw. Most patients will never undergo that test. A minute after it was done, I felt fine, knowing that it was necessary for a shot at a transplant. I go into any labs, MRIs, or CAT scans with a good feeling. This is for my benefit.
Posted 1/8/2011 1:08 AM (GMT 0)

I get blood work and MRIs now every 6 months, with a follow-up for results the next day with my hepatologist.  I hate that a PIC team member or radiologist has to access a deep vein in my upper arm for the infusion of contrast...but don't mind the MRI itself.   I had these tests much more frequently when I had liver cancer.  I have never been fearful of results.  What is, is.  And they are always pretty much the same...no visible cancer and LFTs a little elevated.  I care more about how I'm feeling physically than about the labs.

Emma, I think you have some anxiety that you either need to work on to diminish (such as deep breathing and acceptance that you have no control of the results) or through the assistance of medication.

Best of luck to hubby!

Hugs,

Connie

Posted 1/8/2011 2:24 AM (GMT 0)
Thank you David and Connie.

I am working on letting go of what I cannot control. Obviously I still need more work!

Connie-I usually schedule my counseling appt for after hubby's appts...to discuss how I am doing with results. Maybe I should think about shifting to prior to appt so I can deal with this anxiety.

Also, missing son...he went back to GA this week. He's so far away.

Emma
Posted 1/8/2011 2:32 AM (GMT 0)

Emma, I think that might be a good idea--to shift your appt. to prior to lab results. 

Hugs,

Connie

Posted 1/8/2011 2:57 AM (GMT 0)
talk to counselor about whether medication might be in order for your anxiety. he/she likely has a participating psychiatrist that can write an rx

don't feel that you are letting anyone down, even yourself. anxiety and stress are tough on the body.

this has been a HUGE life stressor!

carol
Posted 1/8/2011 4:42 AM (GMT 0)
Take a deep breath.... take a walk...read a book... watch tv... take something to keep your hands busy...your mind too...do something out of your regular routine... go to the mall and people watch... just plain get your mind out of that gear... whatever you like to do...when we were at the Mayo... while Mike was sleeping up in the room.. I would take walks...it helped.... put your energy into something else...Sandi
Posted 1/8/2011 8:26 PM (GMT 0)
blush  This reply goes out to David: I'm not sure which forum to respond to because I have Crohns Disease with now pre-existing liver conditions. I've been having symptoms I guess for the past 2years of itching and fatigue and all my 2ndGastro Doctor that I go to know says my bloodwork is normal,  the bilirubin is normal and the other (I can never spell it right) alks-phosphtase is minimally elevated but he sees no concern to do a liver biopsy at this point. I do know my family history both parents hadcirrhosis, but ofcourse they drank all of the time, and I don't drink. I do know that people can develop cirhhosis or that PSC and don't have to have a drinking problem. I go back next week for a consultation and my hubby will go to as he is tired of me being stressed out over this liver issue. My Doctor also wants to put me on the drug Humiria for my Crohns because of my Fistulas and stricture in my small bowel. But it is not only not expensive but comes with alot of side effects!! He says there is a 50-65% chance of it working, but told me if I didn't I could end up with an infection or create more fistulas. I feel very strongly that with Crohns I have now developed PSC. I'm not trying to diagnosis myself, but it worries me alot!!I also had HepA when I was 5years old, which I was told that goes away, but I always thought you always carry the anitibodies. I know that before my boys were born I had to have a shot of Gammagoblin(however you spell it), plus a few years back when I went to my 1st Gastro Doc(for 8yrs) I was diagonised with a enlarged liver, and all he said was "that's the way my liver is") Just acted like he didn't care all that much!! I've been going to this one for about 11/2years and he's nice enough, his staff is kinda on the rude side. I asked one of his nurses if he was also a liver specialist, and she rudely said"All GI doctors also deal with the liver. I told the Doctor the last time I saw him that I was always tired and itched all of the time, and he just smiled. I guess he thinks there is no reason to be concerened and why should I be. Sorry for this long story, I don't mean to keep rambling on!! Take care of yourself--Silvergriz
Posted 1/8/2011 9:16 PM (GMT 0)

Silver, the antibody for Hep A will be undetectable 6 mos. from diagnosis.  PSC is primarily found in males.  This may be why your GI doc is brushing off the possibilty of liver disease.  However, you might to get a referral for a 2nd opinion from a hepatologist.  The diagnostic test for PSC is a procedure called an endoscopic retrograde cholangiopancreatography (ERCP.)

Hugs,

Connie


Posted 1/8/2011 10:23 PM (GMT 0)
A couple of things. I trust Connie about males having more problems with PSC. Having said that, I know a young woman in my neighborhood with Crohns, now she needs a liver transplant due to PSC. If possible, I'd find a hepatologist, rather than sticking with a GI. I've heard too many stories from others about GIs having dismissed patients with Hep C and other liver problems as malingerers, especially if alcohol or drugs was involved. The only problem I've had with a doctor in my 9 years of dealing with Hep C, was the GI I went to after finding out I had the virus. He told me it wasn't a big deal, something I thought ridiculous. It was. After going to a hepatologist, I soon realized my disease was a very big deal. Get to a hepatologist ASAP. This is your life at stake!
Posted 1/9/2011 2:02 AM (GMT 0)
sad  This reply goes out to David: Thanks alot David for your input. My hubby and I have a consult with my GI Dr, next week because for one I have not been feeling up to par, except I have felt quite a bit better this last week. Having said that I knpw he's probab ly going to want to bloodwork again, and I'm going to ask him about seeing a liver specialist and see what he thinks. I am surprised with my pre-existing liver issues, that he would have sent me to one before this. I feel that this drug Humiria he wants to out me on for my Crohns, is probab ly going to excaberate the problem, that;s one of the questions that I'm going to ask him. I know that one fellow I used to work with had to have a liver transplant because he came down with that PSC and he said he didn't know how he even got it. He said he was on the transplant list for 7years before he got a new one, and was just lucky they found to match his blood type because they had given him only 6wks. That's scary, I certainly don't want to get to that point, I think this GI Doc is just going on my bloodwork alone. I remember that one nurse asked me"Whats the matter, why don't you have faith and trust in your doctors? Some way I do and some ways I don't. I had heard this Doctor came over from the Mayo Clinic, but I live in a small town in Montana, and I would have to say most of the Doctors here are not the best!! You just never know I guess. I haven't work since last June2010, when I got laid off from my job at the hardware store and now had to take out their Cob ra Insurance which is going to last for about a year unless I have to go on disabiility and then they can extend it for 24months total, and said I would be eligible to take out their regular Insurance, or there was a different kind I would be eligible for. In any event, I can't put this off any longer, I need to know. I guess you have to be pretty sick to even have your Doctor put you on the transplant list from what I heard. I asked my Doctor once about that and he said your a long ways away from that. Thanks alot David for your input!! Take care--Silvergriz
Posted 1/9/2011 2:52 AM (GMT 0)

Just a point of information, Silver:  Your doctor is not the one who would put you on a transplant list.  You would be referred to a transplant center (is there even one in Montana?) and they would decide whether to evaluate you.  Evaluation is a very extensive and thorough process of scans, blood work, cardiac evaluation, psychological evaluation, etc.  The MELD score determines whether you are placed on the national transplant list or not.  In most instances, it would have to be pretty high for you even to be listed.  With all that I've experienced with hep C, liver cancer, and cirrhosis, a transplant or MELD score has never been mentioned to me.  I calculated my own MELD online and it's only a 7. 

Do you have a primary care physician?  He would be the one to ask about a referral to a hepatologist...if there is one in your area.  I wouldn't mention it to the GI doc as he may take offense and you don't want to alienate him if he is the only doctor available to you.

Hugs,

Connie

Posted 1/9/2011 3:18 AM (GMT 0)
smilewinkgrin  This response goes to Hep93: Thanks Connie for your input. I have 2 doctors one a primary care doctor and the other a GI doctor for my Crohns. A little story here, an acquaintance of mine I used to work with a few years ago got very sick, and he came down with PSC. He said he was on the transplant list for 7years. Now how he got there I don't know, but when I talked to him, he said he ended up in Denver and he did get anew liver in time, he said he only had about6weeks left and was lucky enough to have one on his blood type. He also was going to a GI doctor in the same building as I and there are three of them. I won't mention any names, but I did go to him once also, and was not very happy. I was referred to this GI Doctor from a friend of mine whose mother-in-law goes to him when shes in town and she is 81years old and has had Crohns for about30years and speaks very highly of him. In fact my primary care doctor said that my liver is functioning fine, and I should be concerned about my Fistulas and strictures. And I think that with Crohns and the liver issues, minimal as they may be, I think he feels that my GI doctor would be the best one to evaluate that when the time comes. So it's bascially a catch 22. All I know is from last bloodwork I had done was and the only ones I know of were the bilirubin was .04 and the alka-phos was 117, which he feels is normal for the bilirubin and minimally elevated for the other. I'm sure he;ll do bloodwork again when I go see him next week. I just itch all of the time, it's driving me nuts!! I told him about that too, and he didn't seemed too concerned. Just not sure of that nasty drug Humiria he wants to put me on, so I'll be asking him alot more questions too!! Thanks alot for all of you info--Take care--Silvergriz
Posted 1/9/2011 4:50 AM (GMT 0)

Silver, I read about your friend in another post.  If he ended up in CO, you can be sure he was referred to a transplant center there.  I was just trying to clue you in that your GI doc can't place you on a transplant list.  But, like your docs, I really don't think that transplant is something you need to be concerned about right now...and maybe never.  The reason I suggested you get a referral to a hepatologist (and this would be done through your Primary Care doc) is for you to get a definitive diagnosis (or lack of one) as you seem to be very stressed out about possibly having a liver disease.  I can't see the point of stressing and worrying, or comparing yourself to others, when you don't even know if anything is wrong aside from the Crohns.

Hugs,

Connie

Posted 1/9/2011 4:58 AM (GMT 0)
Hi Silvergriz,
Living where you do is going to make things tough. As Connie said, Is there even a hepatologist in Montana, much less a transplant hospital. I'll see if I can find out on the web. Where people live makes a difference, as does blood type and size of the patient. I was #3 on the list and was close to death, with a MELD score that jumped from 18 to 24 in a week. The first question the doctor and transplant coordinator wanted to know was how much did I weigh. Because I'm 5' 9" and weighed 150, they put me ahead of the 2 people on the list with my blood type. My blood type is B+, a fairly unusual one. The less common ones blood type is, the better chance you have of receiving a liver. If you have the wherewithal, some states are easier to get transplants. Florida has several transplant hospitals. They do a lot of transplants there.
Posted 1/9/2011 5:01 PM (GMT 0)
blush  This response goes to Hep93: Many Thanks again Connie. My primary care Doc here in Montana, he doesnt seem that concerned. I'll meet with my GI Doctor this week and will; probably do up some bloodwork and see where I am. But they have been minimal(the alk-phosphtase)I can never spell it right and the bilirubin he always said was normal. I remember he told me once last year, if I couldn't sleep at night, we could do a liver biopsy, but he recommended not to because it was minimal and no reason to go poking around there when we don't have to: I know you said Connie that you had HepC and cirrhosis, I can't remember though, with all of that that you went through, did you get to keep your liver(Sorry-just curious). My primary care Doc and my GI Doc has never seemed concerned in the least not even to go see a hepatologist. I'm hoping thru it all, it will stay minimal. I've just been so tired and I itch all of the time, it drives me NUTS!!! I'm just not going to worry about this anymore, what I need to do is start looking for a job again and hopefully one that's got health insurance. I guess the other thing that has been stressing me out, is this drug Humiria, which I will talk to my GI Doctor as well this week. My question would be--why would you put someone on this with pre-existing liver conditions? But this may be my only alternative as he said surgery was not an optopn. I can remember very clearly that one of my primary care Doctors nurses(who was very rude) said and I quote"Why don't you have faith and trust in your Doctors, I know you are always worried about your liver, both Dr. W and Dr. Y(my GI Doctor) says your liver functioni is fine"!!!, plus the fact you have Crohns"!! I guess I shouldn't worry as much unless there is something to worry about!! Take care and Thanks again to you and David!!--Hugs--Silvergriz
Posted 1/9/2011 8:04 PM (GMT 0)

My point was simply that if you want to see a hepatologist, your primary care doc would be the one to make the referral.

You say you have trouble spelling alkaline phosphatase....have you ever looked at the Medical Terms thread?  The correct spelling is there, as well as correct spellings for many other terms.  Also, Humira only has one i.  It's best to know the correct spellings of terms and meds so that you can communicate more effectively with your doctors and their staff.  I can't give you an answer on the Humira.  But absolutely do voice your concerns about it to your doctor.

In answer to your question, I lost the right lobe of my liver due to cancer, but am doing fine with the remaining left lobe, except that it also contains cirrhosis and hep C.

Hugs and good luck,

Connie


Posted 1/9/2011 8:23 PM (GMT 0)
blush  This response goes out to Hep93: Many Thanks again Connie, I did send you an e-mail I hope that's okay. I was reading some of the posts out there and I was wondering how Harp is doing these days. I know he was really concerned for his brother, I hope all is better now and my best regards also goes out to Rick.  I didn't know whether to send one out to each directly. Take care and hope you have Good Heallth in the New Year!! Silvergriz
Posted 1/9/2011 8:32 PM (GMT 0)

I haven't received you e-mail yet, but it's perfectly fine to contact me that way.

Also, Harp's brother has been placed on the transplant list, I believe. 

Hugs,

Connie


Posted 1/9/2011 10:06 PM (GMT 0)
Hi Silvergriz
I did some research and came up with a few GIs, but no hepatologists in Montana. There are quite a few in Salt Lake City as well as in Colorado. Email me and I'll send you the names and addresses of the GIs in Montana and how to find hepatologists in other states.
Posted 1/9/2011 11:26 PM (GMT 0)

Silver, I'm thinking you sent the e-mail to me to the wrong address as I still haven't received it.  And yours isn't in your profile.

David, I think she is satisfied with the GI she is now seeing.

Hugs,

Connie

Posted 1/9/2011 11:50 PM (GMT 0)
blush  This response goes out to Hep93 and David: I  just got off the phone with a nice lady whos battled crohns all of her life and is still on the drug Humiria. She said for her that drug has been a miracle and she also said her liver stuff was elevated and her doc seems to think there are no concerns. I'll talk with my GI Doc this week and get his input and probably give it a go and see what happens. If you ever want to e-mail me my e-mail address is: [email protected]. Thanks alot ConnieHep93 and David for all of your input. You guys are great!! Take care--Silvergriz
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