Lindzee

Firstly enjoy your time at home. I know the first time I went home after spending 7 weeks in hospital I cried as soon as I came through my front door.
The advise I can offer is as follows
*if he gets a fever go straight to hospital. Dont delay however tempting it is to stay home.
*limit visitors to control germs
*follow the low bacteria diet
*use lots of hand sanitizer
*go for walks in the neighbourhood but avoid busy places like shopping malls

I wish you the very best of luck

Lisa

Lindzee,

I agree with everything Lisa has advised especially in relation to fevers.

You may have told neighbours and friends that visiting is limited but well wishers often arrive bearing gifts of flowers and plants if only to pass them through the door. Protocol may vary from hospital to hospital but flowers and plants were a no no from my hospital.

He will enjoy his break from hospital I know I did.

Enjoy your time together in you happy home.

Planxty

Absolutely -- this is what I was thinking as well -- he might feel good and want to get out and work in the garden -- NO -- no dirt, no dust, getting out a little and walking around is OK but do not let your guard down. Some of my worst days were from fevers during consolidation. We are so glad for you -- our prayers have been answered. But be sure to continue to do your part. -- dave

Lindzee,

I will just add one piece of advice my Doc gave me..... tell your friends and family, if they love you to stay away. I know this sounds harsh but he explained that I am "use" to my daughters and husbands germs but for those people I did not live with, should stay away.

I was discharged from Induction on 19 April and have continued to follow this advice. I am chemo only and headed to consolidation #3 next Tuesday. So far I have not entered a public building of any sort-no church, no stores, no work-I telework. I walk every day and walk ten feet away from any other walkers and never down stream.

I know this may sound (and probably is) draconian but while in the hospital ( I am treated on a floor dedicated to Adult Acute Leukemia and Lymphoma) I saw several patience at different phases of treatment succumb to fungus/mold/bacterial/viral infections very quickly. I have not had a single fever/infection or trip to the ER. I give God all the glory for this blessing.

My docs advice regarding isolation was tied to his comment that Leukemia is curable, chemo is doable, it is the infections that you need to protect yourself from.

I have found being home simply glorious! The pre AML me had wheels on my bottom-Working 50 to 60 hours per week for the Air Force, teaching Master's classes online and on ground year round, raising three amazing daughters under the age 13, camping and ATVing and traveling when ever possible. I was anything but a homebody. Now I LOVE being at home and focusing on healing and being cured- physically, emotionally and especially spiritually.

At my clinic visit last week, I discussed this approach with my Doc who agreed this is what they wished all patience could/would do but not everyone can tolerate the sequestration. Your husbands doctors may not agree with this approach and you should always follow their recommendations.

Just providing my experience.

PS- many people may be providing meals (we were flooded). I did not eat them because I could not confirm the cleanliness of the preparation.

Best wishes and blessings,

Julie

Lindzee

I found my own bed and shower to be the biggest mood lifter. I didn't want to be fussed over just given time to potter around the house, sit in the sunshine and enjoy no one poking and prodding me. It's a time to enjoy all the little comforts of home and family. No doubt you will be back and forward to the hospital for regular blood tests and as the others have said to take precautions for infection. Enjoy this time!

Nicole

Congratulations on getting to go home! I agree with everything that everyone says here and have done all of it myself (though I don't think I am quite as careful as Julie--I should be!). But I also want to add one thing: it is a little scary, going home. You have GOT to be careful about visitors and germs and taking your temp and getting to the hospital the minute you have a fever (I had to go back three times; each time it turned out to be a hospital-acquired infection and I was treated quickly, but it was scary.) And, you have been in an environment where help of any kind was a call button away and you are monitored all the time and fussed over to the point of distraction, and suddenly it all disappears. The first time I went home (after nearly 2 months in the hospital and rehab), I also found that my limitations were more evident in some ways than in the hospital. My own ability to negotiate my own home was changed, changed a lot at first.
I totally agree with everyone that it is much, much better to be home, to have your own bed, to sit on the porch or take a walk, to at least look at if not work in the garden, to see my cats. But I was anxious for the first few days, and you might want to be prepared for that.

Shoshone

Lindzee,
I am so happy you are able to bring your husband home. It does bring an entirely new set of concerns, I agree. I was never left alone for the first few weeks. We joke now, but I had babysitters all day for a couple of weeks. If my mom came, she would just stare at me for hours. I also came home with a walker. I had significant musculoskeletal issues having been bedridden most of my 7 weeks of induction (long story). I am only 49.
The few things catching me off guard, eating -make sure something is available to heat up fast or tuna with crackers, I still roast plain chicken as a quick go-to and can be eaten cold.I also would get crackers(saltine and graham), peanut butter, Popsicles. See if there is a mini refrigerator or cooler available to have cold water available or ice chips without doing too much moving around. My physical therapist would remind me to stand and move every hour -get up for the sake of getting up, she would say. Be close to a bathroom, even if you are stuck on just one floor. No steps, they completely threw me off until I practiced several times. It may seem dumb, but I thought I would walk in my house and magically, it would all be gone, (leukemia, instability, etc) silly me, my equilibrium was off. I had a room set up a a bedroom on my first floor. I am sometimes over the top, but I just was so happy to be home that I often was over excited and did not realize that just the emotion could be exhausting. I have pillows on my sofa (bed pillows) as extra seat and back support and blankets, so when I got tired, I could just roll to my side and sleep. I especially loved all my TV channels.
Also, invest in a pill box and set up the medications ahead of time. I had a nurse come in the first day and three times my first week. I was confused by a lot and it was frustrating -me, with my 30 years of medical training (go figure). I also would have my cousin stop in who is a nurse, just to be on the safe side. I refrained from having any visitors and I shut off my phone. Everyone wants to call you, it was exhausting.
I will say extra, extra prayers tonight that it is complete smooth sailing. I love to hear stories about another warrior going home. And as discussed, if a fever comes on, no fear, just get back to the hospital as you know. You'll cry but its not worth the potential complication.
Be blessed. Peace, love and hope.
Andrea

Agree with everything Lisa mentioned....

Also try and get his stretgth back so he is in good shape for the next round (if he is having another) ... by walking a little further each day this should be all thats needed.

We went to a cafe or two, but sat away from everyone and just had a coffee (mum would take her own cheese sandwich from home if needed) .... didnt eat in case or bacteria.

Good luck and home helps 200%