Update on my Tom..
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Thanks everyone. Bob, you do sound a lot like Tom. He couldn’t understand why the Drs and I thought he needed to go Sat night but by Sun he was really sick and glad he was there. I don’t think he understands how much better I feel when he he is there and being taken care of instead of here with me worrying like crazy. It’s always a relief when they act quickly and admit him otherwise I know I’ll be making the 2+ hour drive alone with him when he’s going through all of his chills, sweats etc.
Betsy, I can’t believe what you are going through. Here I am complaining about being tired of dealing with Drs, you must be completely exhausted! Your issues are probably a lot like Tom’s now. There really isn’t much to do expect try to keep infections and cancer at bay, hope things heal ,and maybe, maybe, some day get a liver transplant. I really hope this second leak heals soon.
Take care all, MaryHi Mary,
Sorry to hear things have not been going well. It is all so very tiring. I’m thinking of you and Tom and hoping things get better soon. I know what you mean about not emailing your docs anymore. I feel the same way. I’m still tied to plastic stents and 3 drainage bags. After my last tube change, the doctor said the leak they have been working on seems to be gone but now I have a different leak in another location. For now, I’m turning it all back over to my doctors and trying to let go a little bit….Take care.
Hugs,
BetsyMary,
The term “I feel your pain” certainly is overused but… I feel your pain – or at least Tom’s. My last year has been much like Tom’s – more trips to the hospital with scary infections than I can count. On a couple of occasions I begged my wife to not take me – of course she had to. It feels crazy that the cancer is no longer a concern but liver disease is…I am praying now for grace to get you through what is before you. May the peace of God surround you like a warm blanket.
bob
Mary…..I so much understand your feelings. I hope that getting this off your chest will give you a chance to renew your energy and I am wishing for a restful time coming your way.
Hugs
MarionI hear you Mary. I don’t even like to make Doctor appointments for myself, it’s like, not another call and appointment to make! But then we do it anyway, because that is what we do. Somewhere, somehow we go to sleep and wake up a tad renewed. You have been so strong and I see nothing wrong about feeling the way you do right now. SO, OK break is over!!! Couldn’t resist that.
Take care of yourself Mary we care about you too.Tom came home yesterday. He’s very weak and sickly looking. It’s hard to believe how hard these infections are on you. The stents are working and hopefully will continue to do so. They said he had a narrowing where his stomach and intestine attach and did biopsies. I’m going to assume that they’ll call if anything is wrong. Neither one of us really want to know.For the first time in four years I feel really tired of dealing with all of this and just don’t want anything to do with hospitals and Drs. He feels the same way obviously. I don’t even e-mail his Dr. anymore because I don’t think they have any answers about what to do about these abcesses. They’re just going to keep putting out the fires when they pop up! I still have faith in them but I’m just burned out. We’re planning on a consultation at the UPMC Liver Disease Center in Pittsburgh. Unless the biopsies come back positive we feel Tom is dealing with liver disease now more than cancer. I think this is going to be ongoing until it kills him or he is able to get a transplant. Sorry, to be a downer but I’m very tired. I’m actually looking forward to winter and rest and relaxation for a few months! Take care all, Mary
Hi Mary,
Thinking of you and Tom and I am keeping my fingers crossed that the doctors get to the bottom of this and can do something about it.
Best wishes to you both,
Gavin
Thanks everyone. Lainey, our year has been nothing compared to yours and Teddy’s. You are a rock! I’m not sure I could handle things the way you do and Teddy is so great. It just all gets too sad. So much for the golden years! As far as the chills I have literally laid on top of Tom to try and get him to quit shaking, you’d think he was having a seizure. Blankets, heating pad, the whole works too! I received a message from his ERCP Doc but was not able to get hold of him tonight. Tom’s nurse said they placed two stents but she didn’t know why. I assume there is a pocket of infection somewhere that they had to get to and then they put one in the normal spot at the scarring site. Hopefully that will do the trick, but having two stents is crazy. Double trouble. Oh well. I’ll know more tomorrow. Good night all. It’s 8 PM and bedtime!! Mary
Hi Mary. What a year you have had. I sure hope Tom is on the road to no infections. Teddy gets those chills and fever but the fever leaves in about 12 hour after 2 Tylenol chase it away. Those chills are the worst. Last week he had 3 quilts on him a heating pad and me over the chest He was shaking so much but when the fever broke so did the chills. He doesn’t have an infection so it kind of goes with the territory. Hope Tom is feeling much better!
Mary……I know how tough it has been this year for Tom and you. So, fingers crossed for the infection to be conquered and a stent replacement to take care of the rest.
All my best wishes,
MarionSorry I don’t post often. I try to keep track of everyone daily but am busy holding down our “fort” these days. Tom was hospitalized for three days the first of Aug and I felt at the time that he was being sent home unwell. I didn’t see him after his admission until I picked him up and I told him then he would be back. He was still jaundiced and weak, bili was 3.9, higher than it has ever been on discharge, and he was just not “right”. Anyway he’s struggled through the past few weeks and did get better, we kind of thought some of his symptoms were from his prostate seeding in July, until Sat night when he got sick again. We are doing a three weekend outdoor show selling dried flowers and he went Sat with my daughter and son-in-law and just kind of slept in a chair all day. My daughter called after closing and warned me that he wasn’t well so I called Columbus and they said to bring him down. At least they don’t mess around, they want him in the hospital right away. So we had a long night Sat. He really didn’t look too bad or feel as bad as in Aug and I always worry that they think we are over reacting but last night he had a full blown attack with the nurses witnessing. Even though I hate to see him go through it, I’m glad they actually saw what I usually deal with at home before I get him there. Violent chills, spiked temp to 103, vomitting and diarrhea, then the sweats!! He’s getting an MRI right now and most likely needs a stent but we don’t know for sure. He has air pockets in his liver that abcess and I think that he came home in Aug with some infection and blockage going on and it just didn’t get better. He’s allergic to some of the best antibiotics so that’s always a concern. It kind of limits what they can give him. Anyway, he hopefully will get a stent and start feeling better soon. It just seems to be never ending some times. He’s had a rough year as far as infections and I think they scare me as much as the cancer. Take care all, Mary
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