Waiting for the Call: What needs to get done at home before you go?

Posted by Colleen Young, Connect Director @colleenyoung, Mon, Jul 15 4:18pm

Recently, we asked the Transplant group members to share their tips in the discussion Packing question: What did you have ready for “the call”?

Along with a lot of great packing tips, several of you mentioned things that need to be done at home in preparation for the call (i.e. pay bills, arrange for someone to mow grass, shovel snow, etc). I’d like to gather your tips again to help others who are waiting for the call.

When you know you’ll be leaving home for an extended period, but aren’t quite sure when you’re leaving, how do you prepare the home? How do you prepare family members?

What should be on your checklist?

Liked by @tbirdmunchkin

@colleenyoung I was thinking about your post here. Whether or not a person is "partnered", prepare a binder. List names of children, neighbors, close friends, relatives, boss and/or coworkers. Decide how much each one should be told about the situation, and group like that. List specific people who can be counted on to pet-sit, water plants, gather mail. List your emergency contact, even if it is your partner, and how to reach them, including their work/boss's information. Think about having two people in charge of handling communication to others, so one doesn't get overwhelmed. If you are partnered, be sure he/she knows what bills are paid when, how much, how. No time like the present to review everything. Passwords to accounts. Passcode to your phone. While you don't want to think the worst, could the people who will rely on you to give them clues of whom to contact and handle affairs, know what to do if you cannot communicate? Consider durable medical power of attorney granted to the person you trust understands your wishes and will carry them through.

If I think of more later, will add on.
Ginger

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I was blessed to have a living donor so I was able to be more planful, although if a call had come I would have jumped at the chance. My husband was going to be my caregiver so I knew when we got back home he'd be busy caring for me and when he wasn't he needed to be resting. We were very well briefed by our Mayo teams in advance on the importance of avoiding unnecessary germs for the first year because of low immunity so I hired a specialty cleaner to prep our house. I think we have a pretty clean house but she went further than I would have thought, everything was disinfected including bathrooms, door knobs, faucets, the fridge, etc. it was so nice to come home to a more germ free home. It really gave me peace of mind.

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Better yet, What should your partner prepare for when caring for a transplant patient. We lived four hours from the hospital. While I had a go bag for my discharge. My wife only took here make up kit etc. Not enough for a nights stay. Gina my wife was to stay half the time an hour away at her mom's house. Our friends watered the plants and took care of our pets. Another friend helped with all the disability forms with the help of Amy, our social worker. The house was cleaned by my mother in law and wife. The climb up to bed was easier day by day. The railing was more for pulling than steadying. I gave my Son a list business contacts to Call to reschedule. Delagating parts of your daily routine to others helps out alot.

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I was able to have a scheduled surgery and was also not out of town for as long as a recipient would be but I am an over thinker and over planner. Here's what I did.
We have a binder at home of all of our emergency contacts, passwords, insurance info, warranties etc. I made sure our house sitter knew where it was and also told my sister about it. I should have brought the password page as I forgot a lot of them were saved to my laptop & I was using my phone instead.
I lined up a back up dog & house sitter. I left our car keys in case our cars needed to be moved or the alarms went off. I gave my neighbor a spare house key. I cleaned before we left but hired someone to clean before we got home. I asked my sister to drop dinner off for our first night back.
I used insta cart? Not sure if that's the correct name. We were at Rochester Mayo and Walmart has a shopping service where you just need to go and pick up the groceries. I planned a menu for our 2 week stay and my husband picked it up. He could have done the shopping but I typically do the cooking and shopping and he was worried he'd forget key ingredients. In hindsight, I would have done the same when we got home because the limited lifting restriction made shopping difficult.

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We lived 4 1/2 hours from our transplant hospital and anticipated it would take about 2 years until I would receive a liver transplant based on information from my doctors and reading transplant information online. We talked about getting together a bag when or if I would get a call for a transplant. Life had a different plan for us. We lived in the path of Hurricane Michael last October and our home was badly damaged and unlivable due to water and mold from roof damage. My health took a turn for the worse the last week of October, I was hospitalized 3 times before my transplant the beginning of February of this year and my doctors requested we stay near Mayo in Jacksonville during the wait. We only had a few sets of clothing and minimal toiletries with us because we only came for a 3 day stay for a paracentisis. My husband purchased clothing and whatever we needed. My advice would be to prepare your hospital bag and get all of your personal business in order even if you don’t anticipate a call soon. We did get our will, power of attorney and advance directive in order. I agree with the ideas posted by others in this group. Thanks to everyone who contributed ideas! (Our house is almost finished and we plan to move back, God willing!)

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In addition to the ideas already shared:
When I was referred to Mayo Rochester by my local transplant center, for an outpatient procedure needed to reinstate me on the transplant list, we were not sure how long we would need to be there, so my husband began to plan for any possible scenerio.

One of the best things that we did was to go our bank and get permission for our son to write and cash checks on our account.
We also began to look into possible long term lodging options.
As it turned out, we were away (750 miles) for 11 weeks.

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@flagal22

We lived 4 1/2 hours from our transplant hospital and anticipated it would take about 2 years until I would receive a liver transplant based on information from my doctors and reading transplant information online. We talked about getting together a bag when or if I would get a call for a transplant. Life had a different plan for us. We lived in the path of Hurricane Michael last October and our home was badly damaged and unlivable due to water and mold from roof damage. My health took a turn for the worse the last week of October, I was hospitalized 3 times before my transplant the beginning of February of this year and my doctors requested we stay near Mayo in Jacksonville during the wait. We only had a few sets of clothing and minimal toiletries with us because we only came for a 3 day stay for a paracentisis. My husband purchased clothing and whatever we needed. My advice would be to prepare your hospital bag and get all of your personal business in order even if you don’t anticipate a call soon. We did get our will, power of attorney and advance directive in order. I agree with the ideas posted by others in this group. Thanks to everyone who contributed ideas! (Our house is almost finished and we plan to move back, God willing!)

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Hi flagal. I am your neighbor living in Michael territory. It's been a long recovery and we still see the devastation every day. I'm waiting on a kidney transplant and trying to get preparation advice from everyone's comments.

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@vickianne

Hi flagal. I am your neighbor living in Michael territory. It's been a long recovery and we still see the devastation every day. I'm waiting on a kidney transplant and trying to get preparation advice from everyone's comments.

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@vickianne, Welcome to Connect. I am happy that you have discovered this discusson to help prepare for your own transplant.
Here is another discussion for you >Transplants > Packing question: What did you have ready for "the call"?
https://connect.mayoclinic.org/discussion/packing-question/
I invite you to bring up any questions that you might have as you wait and prepare for your big day.

You have added a new dimension to connecting! It is exciting that you have met @flagal22.

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@flagal22

We lived 4 1/2 hours from our transplant hospital and anticipated it would take about 2 years until I would receive a liver transplant based on information from my doctors and reading transplant information online. We talked about getting together a bag when or if I would get a call for a transplant. Life had a different plan for us. We lived in the path of Hurricane Michael last October and our home was badly damaged and unlivable due to water and mold from roof damage. My health took a turn for the worse the last week of October, I was hospitalized 3 times before my transplant the beginning of February of this year and my doctors requested we stay near Mayo in Jacksonville during the wait. We only had a few sets of clothing and minimal toiletries with us because we only came for a 3 day stay for a paracentisis. My husband purchased clothing and whatever we needed. My advice would be to prepare your hospital bag and get all of your personal business in order even if you don’t anticipate a call soon. We did get our will, power of attorney and advance directive in order. I agree with the ideas posted by others in this group. Thanks to everyone who contributed ideas! (Our house is almost finished and we plan to move back, God willing!)

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@flagal22, You have shared some very important advice about being prepared. We just have no way to know when that call or change of circumstances will interrupt any plans. I was fortunate that my husband was such a good planner, because I was quite ill before I ended up in ICU in Ky and missed my outpatient appointment at Mayo Rochester. I had to be flown to Rochester. My husband was permitted only 1 small carryon bag on the medical flight. At least he could go along! I had only the hospital pj's and after a 2 week hospital stay, he had to purchase me to wear.
I hope that your home will be ready soon. That will be a wonderful event for you and your husband! Adjusting to life with the new organ is a crash course in life changes by itself, plus you have been hit with more than in imaginable.
How are you feeling since the transplant? Would you be interested in some post transplant information?

Here is information from the transplant staff who post regularly in the Pages section of Connect.

Self-Care Tips for Transplant Patients
https://connect.mayoclinic.org/page/transplant/newsfeed-post/self-care-tips-for-transplant-patients/
Top Transplant Hacks: Patients Share Their Best Tips and Tricks
https://connect.mayoclinic.org/page/transplant/newsfeed-post/top-transplant-hacks-patients-share-their-best-tips-and-tricks/
Transplant Physicians and Local Physicians: A Partnership to Provide Best Care to Every Patient
https://connect.mayoclinic.org/page/transplant/newsfeed-post/transplant-physicians-and-local-physicians-a-partnership-to-provide-best-care-to-every-patient/

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I respectfully asked for NO VISITORS at the hospital and when we got home. I felt very strongly that I owed it to my donor and all of the people who were waiting for an organ themselves to take the very best care of my new kidney from the start. Taking the BEST care of myself included resting and maintaining a germ free environment. I thought that my hubby posting to Caringbridge kept everyone informed and prevented disruption while I was healing. Asking for no visitors also prevents germs, colds, bacteria etc. from being passed to others in the hospital and transplant houses.

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@jolinda

I respectfully asked for NO VISITORS at the hospital and when we got home. I felt very strongly that I owed it to my donor and all of the people who were waiting for an organ themselves to take the very best care of my new kidney from the start. Taking the BEST care of myself included resting and maintaining a germ free environment. I thought that my hubby posting to Caringbridge kept everyone informed and prevented disruption while I was healing. Asking for no visitors also prevents germs, colds, bacteria etc. from being passed to others in the hospital and transplant houses.

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@jolinda I too discouraged visitors. I told both my son and daughter who live a distance, to not bother to come. I would be resting most of the time and it would not be worth their while. My son had flown home (NH) from CA when I was in the local hospital once, prior to transplant. It was such a beautiful gesture but I didn't want him to feel the need to do that. My daughter visited more frequently too while I was pre-transplant and that was more important than after I got my new liver.
JK

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@jolinda

I respectfully asked for NO VISITORS at the hospital and when we got home. I felt very strongly that I owed it to my donor and all of the people who were waiting for an organ themselves to take the very best care of my new kidney from the start. Taking the BEST care of myself included resting and maintaining a germ free environment. I thought that my hubby posting to Caringbridge kept everyone informed and prevented disruption while I was healing. Asking for no visitors also prevents germs, colds, bacteria etc. from being passed to others in the hospital and transplant houses.

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We told people to not come to visit, too. I needed rest, and every day from 12 noon until 3 PM was my nap time. My husband took all phone calls so I could sleep or rest undisturbed.

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@vickianne

Hi flagal. I am your neighbor living in Michael territory. It's been a long recovery and we still see the devastation every day. I'm waiting on a kidney transplant and trying to get preparation advice from everyone's comments.

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Hi @flagal22 and @vickianne Welcome to Connect.
I can't imagine how horrible it must be to have to go through this. When we see the devastation on TV it is always heartbreaking. I haven't had the TV on the last few days but it doesn't seem there has been a lot about this last hurricane/tropical storm, Barry, so I hope it's because it died down a lot.
Up here in New England we deal primarily with snowstorms. I can live with those.
JK

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I was lucky that my Wife caregiver was also a nurse so so of the things she prepared at home was set up of a downstairs bedroom. Sanitizing everything and have all the supplies like a shower chair, gloves masks sanatizer and also we asked that visitation be keeped to a minimum and no sick ness. Masks were required for all visiting. Plus sanitizer. We basically set up the house to be like our hosp room on the rules for visitation. Clorox wipes were used regularly on all door knobs and handles. One other thing. We stayed at a hotel near mayo the first 3 weeks after release from the hospital. And my wife made me stay in the car until she sanitized the room with clorox wipes. We were not leaving any possibility of straw germs.

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@contentandwell

Hi @flagal22 and @vickianne Welcome to Connect.
I can't imagine how horrible it must be to have to go through this. When we see the devastation on TV it is always heartbreaking. I haven't had the TV on the last few days but it doesn't seem there has been a lot about this last hurricane/tropical storm, Barry, so I hope it's because it died down a lot.
Up here in New England we deal primarily with snowstorms. I can live with those.
JK

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The hurricane has definitely had a devastating effect on our community. We've lost doctors, teachers and many businesses. Stores and restaurants are trying to reopen but there aren't enough workers because there is no place for them to live. Personally it has complicated preparations for a transplant. Our home still has mildew and needs glass replacement. We're waiting on an insurance settlement.

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