Topic: Not sure what's going on... losing hope

I've about reached my limit here. We just got the latest results from my husband's blood tests and his bilirubin went from 10 to 14 in these past two weeks. I'm very worried that this might be the end. The University of Utah can't give him a transplant because he has too many little tumors on his liver, and the CTCA won't treat him because his bilirubin is too high. Most of the other places we tired also can't do anything because of those two reasons. We tried to find holistic doctors, but we have had much luck with that either. He has been eating and drinking more than when he started all this and has not had vomiting or fevers, but he's still very tired and doesn't move much. We also have been giving him these Critical Liver Care supplements as well as liquid vitamin C, but it seems like nothing has really changed. Unless somebody can suggest something else I'm going to call Hospice to take him in. Despite all our prayers it looks like God wants him back, and our family is just going to have to be strong and deal with it.

Re: Not sure what's going on... losing hope

How is he functioning? Is he feeling ok besides the tiredness? I am not trying to sound harsh, but I would be devasted if my husband wanted help from hospice if I wasnt in any pain and was functioning normally except for a little tiredness. I would feel not abandoned, but something that I cant really explain, but I wouldnt like it if the only problem I was having was tiredness.

Does he have stents? If not, maybe he needs them or if he has them, maybe they need to be cleaned out.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Not sure what's going on... losing hope

mybdm, I'm not sure I understand his condition.  I guess I don't know his historyand everything you've tried but based on what you wrote above I'm not sure I would be calling hospice yet.  There are lots of doctors out there some more aggressive than others.

God bless

Re: Not sure what's going on... losing hope

He has good days and bad days I guess. He uses a walker to help steady himself whem he gets dizzy spells. Even though he takes lactulose his bowel movements are irregular with some days having none at all to some where he has about 2-3 large ones. He has nursing assistants helping him day and night because I'm afraid to leave him unsupervised.  He said a few days ago he felt generally ok but recently he says he's been feeling not so good. I'm sorry I was'nt clear before. I probably shouldn't have said a "little" tired. He lays in bed for hours on end either watching TV or sleeping. He occasionally moves to his chair nearby to eat or change positions. My son also helps him lift himself out of bed since he hurt his back recenly. He does not have stents because there's no blockage. I hope this is more helpful.

Re: Not sure what's going on... losing hope

Dear mybdm......I guess the only input I have is what does your Husband want to do?  Is this something you may have already discussed.  Does he want to pass at home or at hospice facility.  It's a hard call to make ,but if I was sleeping and watching TV, having a bowel movement at least every three days and can get to the bathroom and do hygiene myself,and not having uncontrolled pain, I would feel comfortable at home, However if you are burning yourself out mentally, and physically, you have to watch out for your health as well.  It sounds as though he is recieving alot of care already which basically bounces back to what does he want to do; honoring and respecting your husbands last wishes may be the deciding factor.  Tough choice, but I,m sure you will make the one the is in the best interst of all.
Actually my wife and I have discussed this and I expressed my desire that when I can no longer take care of myself ,I will not put the burden and stress on my loved ones as pallative care can be quite exhuasting.  In fact I have already preplanned/ made arrangements to make all go as less bumpy as possible. Just like a will, life insurance, medical directives thes should be in order healthy or not.  It's different preferences for different people.  My family feel I should have a big hoop-hurray with full military honors.  I just want a simple at home friends and family celebration. I don't want the stigma of oh! he passed away in that room.  Some people can't handle that.  Hard choices all the way. Unfortunatley your husband has not many more he has to make.  May The Lord give you strength.

God Bless You Both,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Not sure what's going on... losing hope

I haven't told him all of the news about his tests. He thinks he's just in a rehab period between treatments. I'm afraid telling him the whole story would break his spirit instantly. He'll want to stop all care and treatment immediately which will obviously accelerate his passing. I feel right now this is the right thing to do because I just know he will react this way.

Re: Not sure what's going on... losing hope

There are several holistic options in your area.  It sounds like you are in SLC.  One is Dr. Marietta Bergdorf, she is in Bountiful.  She is the naturopath that we worked with.

Modern Health Clinic - (801) 397-2273

Re: Not sure what's going on... losing hope

stacie,

Actually, we are in Annandale, VA. We are looking for options here or in D.C. or in Maryland but are having trouble.

Re: Not sure what's going on... losing hope

Mybdm

I think you should get second opinions about having stents placed to bring down his bilirubin.  After that he can start treatment (chemo/radiation)  It is tough to tell a doctor what they should be looking at but most times is very helpful to have somewhat of an understanding of what treatments/options are available for this disease.  We need to know this disease and be able to advocate for our loved ones because obviously they are most times unable to do so for themselves.  I know from personal experience how difficult it is to stand up to a doctor who you think is looking out for your best interest but unfortunately, that is not always the case.  I don't understand why he doesn't have stents placed to help drain his bilirubin.  Praying for you and your family.

Christina

Re: Not sure what's going on... losing hope

Mybmd,
Scrolling through your previous posts you had mentioned of your engaging Hospice.  Has that visit taken place and what was the outcome of the conversation and how involved was you husband in that process?  I would make another call to Hospice and explain the situation.   Remember, they are there for you, also.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Not sure what's going on... losing hope

If he doesn't know the results of his tests, I don't think he can make an informed decision about hospice. If he is still walking, I think it may be premature to set up hospice care.

If you think there is some hope for him, a doctor at the Univ. of Viriginia just published a study this past March on photodynamic therapy (PDT) so you might want to contact him to see if your husband is a candidate. The article is in the Medical Updates section, here is the outside link:

http://www.eurekalert.org/pub_releases/ … 041508.php

Patty

Re: Not sure what's going on... losing hope

Mybdm, from my limited experience, I agree with what Christina wrote. If he has no blockage, why is his br going up? If a drain or stent were to be inserted, perhaps his numbers would go down and more treatment options would be available. Another symptom of blockage would be itching, then you'd know for sure that you're dealing with a need for drains or stents.
Hoping for good things, Belle

Re: Not sure what's going on... losing hope

We always thought that the higher the br, the worse his liver would be. Now that it's at 14, I don't know how to help lower it and I'm very worried that is liver is failing fast. How high can br get before the person dies? The doctors never said he had trouble with blockage and he hasen't been itching very much. As to his functioning, he has to use a walker and also needs someone standing beside him holding onto him so he doesn't fall like he did weeks ago and hurt his back.

Re: Not sure what's going on... losing hope

well, chucks br was at 18 when first diagnosed.  If the br keeps going up there has to be some type of blockage of the bile.  They put stents in and the br came down pretty rapidly.  It is a fairly easy procedure.  You should ask your doctor why this hasn't been done or even talked about.  Has he developed ascites or edema (swelling in abdomen and legs)?

Christina

Re: Not sure what's going on... losing hope

He has had both endema and ascites and is taking medication for both.

Re: Not sure what's going on... losing hope

That could mean his albumin is low or there is a blood clot.  In chucks case he has a bloot clot which caused him to develop ascites and edema.  Just because br is high doesn't necessarily mean albumin is low.  Try to get some info from the docs.  It doesn't seem like they are keeping you guys very well informed.

Re: Not sure what's going on... losing hope

Well, we do get printouts of the latest tests that show lots of his statistics. His most recent one showed high br, low albumin, low red blood cell count, and normal white blood cell count. His platelets are also a little low. We see doctors at Georgetown University Hospital but I'm starting to doubt their competence with how they are handling this.

18 (edited by JeffG Mon, 28 Jul 2008 19:54:05)

Re: Not sure what's going on... losing hope

mybdm.... I don't recall the history of your husband.  Has he had surgery of any type?  If you are not comfortable with is current treatment, gather medical records and scans and go for another opinion.  Your previous scan mentioned he had 24/7 nursing care. I took that as he was not doing well at all and you had exhuasted all options.   What feedback has the nurses given you? Althought they try not to contradict doctor orders, ask them their personal opinion.  Click on treatment options above and you will find other options to consider.  You really need to be aggresssive and advocate for your husband.  Is his cognitive ability lessoned to the degree as not able to decide what he wants.  It sounds as though possible stent placement might be an option for him, if his bilibrium is going up and he is itching slightly. I would be open with him so he knows the score and can make a decision.  He might surprize you and say, hey lets put up a fight and that he isn't ready to go.
Wish Only the Best,
Jeff G.

Take it to the Limit,One More Time! (Eagles)