Update on Opa

[CarolineG]

One of my worst nightmares has happened. The internist sat Mom and I down thisafternoon and told us that Dad is going to die very shortly. He has CMML, Chronic kidney failure, an enlarged heart, severe blood poisoning (from the kidney failure), and of all things….ALZHEIMER’S Disease. Dad’s C-Diff Colitis infection returned last night after 3 VERY healthy weeks. Within 2 hours he went from being happy and energetic since we had spent the entire day at the Renal Clinic in Guelph who had given him a whole new lease on life with their positive attitudes….to a gravely ill man who was hemorraging, had a 102.5 degree fever, was delirious, etc…. Mom helped him get to the bathroom and he panicked and they both fell against the shower doors. He fell on top of Mom, hit his head on the glass doors and bruised Mom from head to toe. Then they both fell onto the toilet and he hit his head on the back of the toilet too. Mom got out from under him and phoned us to get over there and help them. We called an ambulance post haste and he was admitted right away into Isolation in Emergency. Besides being very ill, his personality was quite odd so a CT Scan was done thismorning and they found no head injury from his falls. What they did find was that Dad has much plaque on his brain and his brain has atrophied. So they did a mini assessment. He is well on his way to Alzheimer’s. We never even suspected it!!!!! He has acted abnormally for the past couple of years but not so bad that we thought it was even necessary to mention it to a doctor. We figured that it was his age in combination with his illnesses. WOW….that was a shock!!!! But now it certainly explains alot of queries. Right now Dad is having dimentia and dilerium. I don’t think he knows who I am. He speaks when spoken to but he does not identify Mom or me. He knew Peter when Peter was restraining him as he was trying to get out of bed to go to the bathroom at the hospital tonight. Dad was connected to several machines and he tried to get away from them so Peter held him down till a nurse arrived. Dad is in Intensive Care so the nurses are right there. We have been told by the Internist Specialist who is taking care of him that since Dad has no immune system left from the Leukemia and his kidneys are almost non-functioning, he will never get rid of any infections which he currently has. Only while he is taking antibiotics will he even feel remotely healthy. The drugs will eat up his kidneys. The kidneys are taxing his heart. His heart is working overtime and is quite large now so they are preparing for him to have a massive heart attack any time. He is on intravenous fluids and antibiotics but that is all. We went to the hospital at midnight last night. I got home at 11pm tonight. In my wildest dreams, I never expected it to go this way. I suppose some of you will remember how awful his last stay at our local hospital was. Well….things haven’t changed up there. I feel so guilty being here at home instead of there beside him but they told us to go and get some rest. His nurses in ICU have been very kind and patient with him but I still feel like I should be there. He shouldn’t have to leave this place all by himself. But, they wouldn’t let me stay in his room anyhow. He is in Isolation so he has to stay in there alone. We have to gown up and wear protection to visit him. We are not even supposed to touch him without gloves on. Nuts to that. I kissed his forehead when I left tonight. That may be the last time I get close to him again. I wasn’t going to have rubber between us.
I better try to get some sleep. I think that tomorrow will be a long day.

Caroline

[sugarwhale]

Dear Caroline,
I just left you an email. Go to your dad. Be with him. Talk to him. You need him and he needs you. Yes, the nurses told you to go home and get some rest. That may have been good advice. But go back and be with your dad. Don’t let him leave alone. Be there with him, if that is at all possible. I am thinking of you, dear Caroline.
Yours in friendship,
Janet

[shirlsgirl]

Oh my goodness. Caroline, I don’t know what to say. I’m so so sorry. Please try not to give up hope. Praying for a miracle.

Sending positive thoughts and prayers your way..

Jody

[CarolineG]

Thank you for your well wishes.

Well….once again, Dad seems to be getting well. He went from dying in Intensive Care last night to being put into an Isolation Room on the Medical Ward thisafternoon. The drugs (Flagyl) have kicked in and are making his C-Diff Colitis Infection settle down. He is coherent again. The last 2 days do not even exist in his history as far as he is concerned. He forgets everything that has happened to him since Friday afternoon before he got sick. He is only allowed fluids and is quite annoyed by that fact. He is starved and wants to eat. For months he has had no appetite because of the CMML but today he could eat a horse. He gets to have soft solids starting tomorrow morning. I wonder what the next step will be with him. While he is on antibiotics, he seems like a healthy but very tired, elderly man. As soon as the antibiotics wear out of his system, he gets deathly ill within a couple of days. Does anyone know if it is possible to put someone on a standing order of antibiotics to be taken constantly? Apparently, C-Diff is almost impossible to erradicate once it takes effect on a person, especially a senior. The antibiotics kill all of the flora in the bowel and then when the drugs wear off, the left over C-Diff germs have a party and reek havok on the patient. I realize that the antibiotics take their toll on the kidneys but at this point, what is worse? Taking a drug on a day to day basis which will allow him to live at home happily while slowly using up the kidney function OR being on a very painful and frightening infection roller coaster which becomes acute within hours and puts him in the hospital every 3 weeks and nearly kills him? Dr. Lawrie, the family physician phoned me thismorning and said that he will not discharge Opa until a whole host of doctors, nurses, social workers and home care specialists become involved in his case. Mom is also Dr. Lawrie’s patient so he has to make sure that she is protected as well. Dad loses his senses and falls on top of her when he gets sick and she helps him walk, jog or run to the bathroom. He hurt her pretty badly this time.
Anyhow, it looks as though we may have Dad with us for longer. I sure am thankful for that.

Caroline

[eve]

i think there are some members of this forum who take antibiotics as a protective measure – may i also suggest that if your dad does go on long term antibiotics you should discuss with his doctor that he also take acidophilus (1 hour before antibiotics or 2 hours after) to keep him from getting a fungal or yeast infection – because the antibiotic is not only killing off the bad bacteria it is also killing off the good bacteria that everyone needs in their system

good luck
eve

[karenkay]

Caroline,
I do not even know what to say since I just went on this rollercoaster ride with my father and the decision was made to get off the roller coaster. Everyone is different and must make the best decision they can based on the wishes of the patient and the reality of the situation. My heart aches for what you are all going through.
I hope he is able to come home and get through this. I wish I had some wonderful insight into the whole antibiotic maintenance, but again, everyone’s body handles things differently. Kidney failure is pretty serious (I know, duh). Does your dad already get dialysis? I know you said he has kidney trouble already.
God bless you and keep you. I hope you can just love your dad and take care of yourself.
There is no better way to describe what is happening than to call it a rollercoaster ride, but with every peak and valley that you come to, please know that you have us to lean on and pray for you and support you anyway we can. I really mean that.
Please keep us posted if you can, but in the meantime, know that we care and are thinking of you.
God bless,
karenk

[sugarwhale]

Dear Caroline,
My trusty email will reach you later on. I’m so glad your dad has perked up! That’s VERY good news. For whatever it’s worth I had a doctor recommend that I take an antibiotic every day for the rest of my life. I did not do this. However, I know that this is done all the time.
I also agree with Patti. If your dad takes an antibiotic for any length of time, he should take acidophilus. If your dad doesn’t want to or if he (like my mom!) HATES yogurt, get some frozen yogurt with choccy and nuts and all sorts of good-tasting things! The cultures are still active!
I’m just so, so glad things went better today, Caroline! More later!
Your friend,
Janet

[riley]

Caroline,

I’m glad to hear that your dad is doing better.

My father’s doctors had talked with him about staying on antibiotics for the rest of his life. Dad didn’t do it, but apparently it is an option. They had talked about cycling through a few different ones that he did well on to try to prevent him from becoming immune to any one of them.

My father also had repeated bouts of C. diff. His hem/onc had him on acidophilus, but his GI doctor brought him DanActive and said it has more active cultures than acidophilus alone. It’s a Dannon product and it’s found near the yogurts in the grocery store. I don’t know if you’ll find it carried in Canada. It’s a drink that tastes good and is one less pill to take. My father drank one every morning and one every evening and he stopped getting C. diff.

I’ll keep you and your father in my prayers.

Nicole

[CarolineG]

Thank you everyone.

The Internist is going to try Activa. I think that may be the Canadian version of DanActive. I looked Activa up and it is made by Dannon so I assume it is the same thing. I was just about to suggest it when the Dr. phoned thismorning and he brought it up first. Fingers are crossed…..

Caroline

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