pmfpa
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My husband was diagnosed at Mayo through DNA and FISH analysis. I don’t pretend to understand it, but it is genetic testing on the cells to diagnose cancer. Very technical stuff. The FISH is an anacronym for Fluorescent in situ hybridization. Some microscopic technique for looking at DNA structures.
I wish Johns Hopkins had done this test a year earlier on him. When he was diagnosed with PSC, Hopkins told us cytology was negative, but the best testing was the DNA testing at Mayo. I foolishly thought that Hopkins was number one and a negative cytology was good enough to not travel 1500 miles.
Sadly, I fear we’re nearing the end of this awful disease and I can hardly write of the pain of watching my husband wither away.
Please keep us in your prayers.
Pam
Thanks for the input Mary. We will meet with interventional radiology at Penn this week, and will most likely sched the proceedure. One just gets so sick of needles, pain, and bad news, it’s hard to “go in” for another proceedure.
Hi Carol, As a couple who have been within inches of a transplant at Mayo, let me just add my experience. My husband was listed for transplant and went through the entire protocol at Mayo. We were there for months on and off. He was removed from the transplant list when the final step in the long process revealed that the cancer had spread to a lymph node.
When the liver transplant happens, it is necessary to take immunosuppresive drugs to avoid rejection. These meds are less with the liver than other organs, but they are still used in rather large amounts initially. This suppression of the immune system will cause cancer to spread rapidly, if it has gone beyond the inital site which will be removed.
I hope that makes some sense. It was a painful reality for us being so close. So, while I was ready to give up part of my liver, it wouldn’t have done any good, and may have further spread the disease.
Pam
As far as fluid in the legs, this is secondary to low albumin or protein in the blood and is a result of disturbed liver function. There is complicated systems to balance our fluids and when the protein is low in the blood, the fluid part of the blood rushes into the tissues.
I must say, that once my husband’s legs began to swell, they haven’t really been normal. He’ll have an odd day when we’ll be amazed at how well they look and then they will swell again with no warning.
We do lasix 20 daily as well.
Mostly, it’s all just a big mystery why some days are better than others.
Pam
Hi Diane,
All of these symptoms can be so confusing and hard to get answers as to the cause. I can only offer my experiences.
Each time (and there have been a few) my husband has been hospitalized with infections, be it stent or lastly pneumonia, he has had mental confusion. The most recent pneumonia, didn’t even present with a fever, he just became lethargic and confused. One of his doctors said that pneumonia can present this way in some cases.
It just seems to me that when the body is so stressed on all fronts, an assault on some other organ can cause the confusion.
This was my homegrown theory, since we’ve never had elevated ammonia levels.
I know some of the doctors that saw my husband on admission, thought he was near dead, and were shocked to see a normal alert man the next day after antibiotics.
This cancer is just so hard on them in general. (Not to mention hard on us all)
Prayers are being sent your way
PamDear Bob’s wife, I’m back from visiting my husband in the hospital recovering from pneumonia, probable secondary to chemo, and I read your post.
I’m so sorry for your loss. Forty-eight is way too young. Not that any age is appropriate for this horrible disease. I admire your strength, and I grieve for you. There must be some relief knowing that Bob is at peace. I know watching my husband go through this is devistating.
My deepest condolences to you and your family. Pam
