Shoved out the door

15 years 5 months ago #21676 by TheWifeAgain
Replied by TheWifeAgain on topic Shoved out the door
I'm glad things are going a little smoother for you.

A "care plan" will be made by the male nurse who assessed Dick. Sometimes they forget the small things so if there is anything missing do not be afraid to ask and see if they can "add it onto the care plan". In my experience the aides have to follow the care plan to the letter.

It sounds like you are taking great care of all of him - not just his legs and feet!

Age 53 Currently
Bladder Cancer Diagnosis October 2006 T1G3
2011 Finally made it 6 month between Cystos
8/22/2011 Cysto in the OR
(BCG and BCG Maintenance over the years)
Graduated to yearly Cystos
Tumor found at first one year Cysto - TURBT 4/26/2013
Kidney pain - CT scan 5/1/2013

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15 years 5 months ago #21671 by Stephany
Replied by Stephany on topic Shoved out the door
Julie, that sounds just wonderful.....like things are finally coming together, with all your hard work. Here's a pat on the back ^^^^^.

And good luck with the trip to the cancer center. I hope they have plenty of curb cuts! If you don't find a step, look on the web. There are steps that have handles that he can hold while he steps up, and steps that fold flat (we carry one in our van for Doran's aunt).

Stephany in Iowa

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15 years 5 months ago #21665 by Julie
Replied by Julie on topic Shoved out the door
Yesterday a temporary ramp was placed on our front step and Dick did a trial run. Down the ramp to the driveway and back up the ramp and into the house. So we are all set for the expedition tomorrow to the Cancer Center for his labs and appointment. Today we had a two hour interview with the home health agency. This time around we have a male nurse with a Master's in Nursing. I let Dick stay in bed as I wanted the nurse to examine his legs before I put the compression hose on. I was complimented on my care of his legs and feet. Still it is something that has to be done every day. With diabetes dry skin is a big issue. He said he heard some crackles still in the lower right lobe. I know Dick is better than when he was discharged but it is a slow process.

He did find a need for a home health aide so we can have one 3 times a week. I know she will give him a bath but I'm not sure what else they are allowed to do for a patient. Maybe she can put on his compression hose after does the bath.

My sister arrived late this afternoon so I left as soon as she got here to go to the oxygen place to exchange pick up new cannulas and trade a small oxygen tank for a larger one that fits in the tank holder on the wheelchair. Then it was on to Camping World to find a portable step that Dick can use to assist him in climbing into our mini van. So I have done all I can do to make things go smoothly tomorrow.
From now on I'll have problems keeping up with him as he wheels down the corridors. Julie

Volunteer Coordinator
ABLSC

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15 years 5 months ago #21620 by Stephany
Replied by Stephany on topic Shoved out the door
Wow, Julie. I am amazed at your strength. I am finding out that we all have more than we thought, but it is too bad that we have to be tested to find out what we are capable of bearing, isn't it?

I am very anxious to hear how the ramp and the lift are working. Today, I went to my husband's office and picked up one of the wheelchairs that we keep there for patients. I brought it home, and used it to transport Doran to the bathroom, because that is the trip that has caused him to pass out and fall several times. It worked beautifully, and I made him promise that he would call me every time he needed it.

I also used it to drag him outside for a trip through the front yard. It's the only time he's been out except for his doctor's appt, and I am very lucky that the weather has been good for the trips.

Tonight, he actually ate the first full meal I have seen him eat in WEEKS. He ate an entire serving of Pizza Hut Tuscani Bacon Mac n Cheese. I just sat there, and watched him in amazement. I am so happy. Of course, then we had to make the fast trip to the bathroom, twice, but, between the Depends and the wheelchair, it was all good.

I am so glad Dick is home, although it may be a little too soon. I know he'll feel better in his own bed, with no strange noises or people around.

Did you get the package yet? And how is Dick's appetite? And does the Procrit have any side effects for him? Doran's PA prescribed a new nsaid for him, that he can take as soon as his warfarin levels go back to normal. That should give him a little more pain control.

I'm going to bed now, hoping that you and Dick have a quiet, peaceful, and long night's sleep. I hope you can get some rest this weekend, and take up the battle again on Monday, refreshed.

Stephany in Iowa

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15 years 5 months ago #21618 by Julie
Replied by Julie on topic Shoved out the door
Pamela, It is hard to know which Dr. and staff to go to for some of these issues. Dick's health situation is about as complicated as they come. I did speak to his hematologist/oncologists nurse on Monday but at that time we both weren't aware it would become such an issue. A big part of the issue is that he is being served by a teaching hospital with all it's politics. The pulmonologist was ready on Saturday to coordinate care but the hospitalization intervened and she had to defer to the inpatient doctors who were on the medical service and by chance his attending was an infectious disease specialist which had no bearing on any of his current issues.

I wasn't in the same medical field but I was a Social Worker Case Manager for the serious and persistent mentally ill and have some experience with coordinating discharge care for our clients. Even with that experience I was floundering at times. I do have standards for how I think

I found the person I talked with at the Home Health agency very simpatico and agreed with our desire to have the whole person treated.

I am surprised that we are not using Hospice at this time. I have been aware of the program since before it was imported into the US from the UK. I thought I was in agreement with the philosophy but as they say circumstances alter cases. I think the major issue is how much medicare rules dictate service.

The crowning blow this morning was to open the quarterly record from CMS who does the billing management for Medicare and found that Medicare had disallowed the Procrit he had received weekly from June through September. During that time the price was raised from almost $2,000 to near $2500. I may have a bigger fight than I thought to have him get shots in the home as we already know they don't pay for it in the home but we all thought it would be paid for in the clinic. He is getting it because of his MDS and they have followed the guidelines. When I see the government refusing to pay for a life saving medication I get very judgmental about evil people who treat persons as objects to be discarded.

Sorry I guess everything has the ability to trigger a rant these days.

Julie

Volunteer Coordinator
ABLSC

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15 years 5 months ago #21617 by TheWifeAgain
Replied by TheWifeAgain on topic Shoved out the door
Dear Julie
I am so sorry for your run around with the home healh care services. Sometimes I am embarassed to admit that I am a coordinator for home health and hospice care. It is a very confusing world to enter and understand. Some coordinators have unfortunately become numb to the ideal of compassion and customer service.

I can applaud you for being persistant and fighting for what you want. However I am also sad that getting what you need has been so difficult. There should be a nurse case manager that works specifically for your husband's primary care physician or at the Cancer Center. You may find working with her/him will be easier than working with a nurse case manager that is responsible for patients being discharged. Case managers in that position are not as familiar with the patient, the needs, the expectations and the necessities of the patient. And, not an excuse, but they are usually overworked and given such a huge number of patients that they cannot provide quality services to everyone that they deserve.

You are doing the right thing and I'm so sorry it is so exhausting. As if you don't have enough other things to occupy your mind and time. Keep at it. After all the sqeaky wheel gets the grease.

If there are any home health questions that I could help you with please feel free to ask. Policies and requirements vary from state to state but basic common sense, compassion and communication should be universal.

Sincerely
Pamela

Age 53 Currently
Bladder Cancer Diagnosis October 2006 T1G3
2011 Finally made it 6 month between Cystos
8/22/2011 Cysto in the OR
(BCG and BCG Maintenance over the years)
Graduated to yearly Cystos
Tumor found at first one year Cysto - TURBT 4/26/2013
Kidney pain - CT scan 5/1/2013

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