Living Life after your Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Jul 4, 2016

I would like to ask you to share ideas about how you ‘live’ after your transplant. For example: hand washing and germ prevention, eating out; attending public events; daily medicine reminder……Practical living; not the medical things. I would like to share an idea for hand shakes.

I am 7 years out from my transplant and I have had some time to implement some healthy practices that work for me. I have also been fortunate to have the support and directives from my post transplant team at Mayo Clinic as well as working as a volunteer with my local organ donor association.
Last week I met a woman, a liver recipient, at an organ donor event. When we were introduced, she reached out to shake my hand. She was 9 years post transplant. She was both surprised and pleased that I did not extend my right hand to shake hers. Instead, I used the American Sign Language hand sigh for ‘Peace’ . She had been struggling for a long time with this awkward situation.

PEACE: Place the right flat hand on the left flat hand at chest level; then place the left on the right. Now move both flat hands down and to the sides with palms down. Pass from one position to another smoothly and continuously.

I hope this helps you as it helped her. Rosemary

@rosemarya

To my fellow transplant recipients, I have this new concern. I welcome any suggestions that you might offer.
Good news is that we are having our home interior painted, and hubby and I agree on the colors! I am concerned about a crew of painters entering into my safe home spaces. I’m already imagining germs, germs, germs!
Has anybody experienced painters or other long tern workpeople in your home? Did it concern you? How did you manage the situation?
Thanks, Rosemary

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Since my transplant I spent one summer digging weeds in the back yard and over a year remodeling our kitchen/dining/living room. When it came time to rip down and construct, we closed everything off with plastic. Some of the dust still seeped through, but it was nothing like if we had left everything open. The workers came in the front door into their work area and left the same way. They cleaned up after themselves and my husband did a better cleaning before I returned to the area. I did not have any problems with paint fumes, but the wood finish was strong and took longer to dissipate. We opened windows and ran fans to keep the odors from our living areas until we were able to move back into the construction area. I guess I just wasn’t worried that the construction would make me sick. After all, I knew I wouldn’t be in the middle of the work, mess and fumes. If you are doing your entire home, I recommend renting a suite or B&B for the time they will be there and maybe a week following. If it is just one room (or a few) that you can close the door to, that is what I would do. Most workers will respect your home and try to leave it in better condition that it was when they got there. Perhaps they could bring their supplies in through a window rather than traipsing through the house with everything. Hire someone to come in for a thorough clean up if you think you need to. One of my friends stayed in their camper parked in the drive for the duration. Maybe that could be an option for you.

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Thank you for reply. Painting is going well. The tarps are magnificent and cover everything. My biggest fear was if someone would bring in flu or something. But the only coughing from crew is asthma and smoking related. We are having a mild weather spell and we are able to let some fresh air in during the sunny days. When they have gone home at end of day, I let loose with the disinfectant aerosol and wipe all surfaces with disinfectant wipes or cleaner. Rosemary

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@rosemarya

Thank you for reply. Painting is going well. The tarps are magnificent and cover everything. My biggest fear was if someone would bring in flu or something. But the only coughing from crew is asthma and smoking related. We are having a mild weather spell and we are able to let some fresh air in during the sunny days. When they have gone home at end of day, I let loose with the disinfectant aerosol and wipe all surfaces with disinfectant wipes or cleaner. Rosemary

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Thank you Rosemary. This is an area I have tried to be conscious of but some of what has been mentioned would never occurred to me, such as people working in my home, if I stay out of contact with them. My biggest concern about infection is my concern with germs when I eventually fly somewhere for a vacation. I know I am to wear a face mask, I presume that is forever when flying, but even so it does concern me. My other germ concern is church. In my church people shake hands during the service. I doubt many would understand the sign language “peace” sign, so I do shake hands and then make sure I do not touch my face of anything until I have disinfected my hands.
JK

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@rosemarya

Thank you for reply. Painting is going well. The tarps are magnificent and cover everything. My biggest fear was if someone would bring in flu or something. But the only coughing from crew is asthma and smoking related. We are having a mild weather spell and we are able to let some fresh air in during the sunny days. When they have gone home at end of day, I let loose with the disinfectant aerosol and wipe all surfaces with disinfectant wipes or cleaner. Rosemary

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@contentandwell, I wasn’t able to respond yesterday, because hubby and I went to a concert. One of my concerns is where to sit in a cramped concert hall. We try to select aisle seats. But last evening, we were in a long aisle of 70+ seats. And we were directly in middle. (terrific seats). To my delight – the 6 seats directly in front of us remained vacant. Not only did I, a short person, have a good view, but relief from my fears during flu season!… In my church I have a “safe seat” with my musical ensemble. And if one of them is not feeling well, they email me so I can decide whether or not to be there.
I have flown with no problem. But I let my husband sit in the middle seat and I get the window. Lots of hand sanitizer and my own water bottle work for me. I also like the air vent to be blowing to keep air moving – don’t know if that has any effect other than in my head though! I bring my own puzzles and do not touch the airplane ones.
Another thing to try when handshaking is expected, and the sign language ‘peace’ doesn’t work for you is to simply smile, and kindly say, ” I have a transplant and my doctors do not want me to shake hands”. You might be surprised at the conversation that it can begin. A big plus is that you have an opportunity to promote organ donation by your witness! JK it wont be too long until these ‘awkward’ situations become your new normal.
Rosemary

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Rosemary, thank you for your suggestions. I am magazine-phobic at this point. Whenever I go somewhere like a doctor’s office or anywhere where I may have to wait, I bring my Nexus Tablet with me to occupy myself so as to not touch magazines. Heck, especially in a doctor’s office some people there are sick of course. I have mentioned that to a number of doctors and all thought that was smart of me, and this was well before my transplant.
I read a few years back that the most unsanitary place in a restaurant is the menu! Of course when you think of it, how many people have handled it?

JK

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@rosemarya

Thank you for reply. Painting is going well. The tarps are magnificent and cover everything. My biggest fear was if someone would bring in flu or something. But the only coughing from crew is asthma and smoking related. We are having a mild weather spell and we are able to let some fresh air in during the sunny days. When they have gone home at end of day, I let loose with the disinfectant aerosol and wipe all surfaces with disinfectant wipes or cleaner. Rosemary

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@rosemarya, First is that the way this group addresses each other, their name with an @sign? I just noticed that.

Also, you say you take the window seat. From a germ standpoint do you think that is preferable to an aisle seat? I was figuring on an aisle seat because they told me I should get up and walk about every half hour, and also because I make frequent trips to the bathroom, a whole different problem of course.

I guess in church I will just smile and say “peace”, there really is not time for an explanation since you generally share the sign of peach with people on either side of you, in front of you, and behind you.

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@rosemarya

Thank you for reply. Painting is going well. The tarps are magnificent and cover everything. My biggest fear was if someone would bring in flu or something. But the only coughing from crew is asthma and smoking related. We are having a mild weather spell and we are able to let some fresh air in during the sunny days. When they have gone home at end of day, I let loose with the disinfectant aerosol and wipe all surfaces with disinfectant wipes or cleaner. Rosemary

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@contentandwell, JK, I like to include the @name because user will receive email notice if they choose. Simply highlight the @name, copy, paste. There is no right or wrong way. I like to use name if it is shared. I think that makes it more like friends chatting. It is your choice.
As far as the airplane, that is a personal, and a necessity choice. I am now 7+ years post transplant, so my needs are different than they were at the beginning, and different from yours due to our varying health issues. I want to assure you that my choices as to how to live after transplant are just that, mine. We can become friends, chat, share ideas on how to live our lives – but ultimately your own post transplant care team is your primary judge and jury on your important issues
You will find what is comfortable and what works for you as you move forward.

Have you returned to your transplant facility for your 4-5 month evaluation?
Rosemary

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@contentandwell

Rosemary, thank you for your suggestions. I am magazine-phobic at this point. Whenever I go somewhere like a doctor’s office or anywhere where I may have to wait, I bring my Nexus Tablet with me to occupy myself so as to not touch magazines. Heck, especially in a doctor’s office some people there are sick of course. I have mentioned that to a number of doctors and all thought that was smart of me, and this was well before my transplant.
I read a few years back that the most unsanitary place in a restaurant is the menu! Of course when you think of it, how many people have handled it?

JK

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@contentandwell I am a knitter. So I always have some small knitting thing with me/or pattern book. And always some hand sanitizer for things like menus! I find it interesting that the ‘world’ gets into germ phobias around flu time, then forgets it rest of year. We just have to remain vigilant.
I have some acquaintances who are transplant recipients, and some of them are not as careful as me, and some who are more careful.
I remember being told that it is all about choices and risks involved.
Rosemary

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@rosemarya

Thank you for reply. Painting is going well. The tarps are magnificent and cover everything. My biggest fear was if someone would bring in flu or something. But the only coughing from crew is asthma and smoking related. We are having a mild weather spell and we are able to let some fresh air in during the sunny days. When they have gone home at end of day, I let loose with the disinfectant aerosol and wipe all surfaces with disinfectant wipes or cleaner. Rosemary

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@rosemarya, I realized after responding I hadn’t answered fully. I wondered about you taking the window seat because I thought that perhaps you felt that would have fewer germs floating around, and I suppose maybe it does. As I think I said though, I get up frequently, partly for bathroom trips and I will also because the transplant team told me I should get up an walk every half hour or so when flying. I read somewhere that if you are wearing a mask to prevent getting germs you should change it every 20 minutes. Anyone else hear that? I have an appointment with my transplant surgeon in a few weeks so I will ask about then.

I go in for an appointment with him every two months at this point. Initially it was weekly, then bi-weekly, then in November he said I didn’t need to return until January and at that appointment he once again scheduled my next appointment in two months. When I go there, to the “transplant clinic” I see a nurse first then the doctor. Sometimes a NP sees me then the doctor comes in but the last few times he has covered it himself. It will be a bit more than 5 months at that point, but as I said, I have been having pretty regular appointments.

I have never been much of a knitter, I did do crewel and cross stitch for a while but now those things are difficult due to changing vision.

JK

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@rosemarya

Thank you for reply. Painting is going well. The tarps are magnificent and cover everything. My biggest fear was if someone would bring in flu or something. But the only coughing from crew is asthma and smoking related. We are having a mild weather spell and we are able to let some fresh air in during the sunny days. When they have gone home at end of day, I let loose with the disinfectant aerosol and wipe all surfaces with disinfectant wipes or cleaner. Rosemary

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@contentandwell Jk, I am no expert on air travel because my exposure is a round trip vacation adventure within US once a year. During the 1st transplant year, I did fly to/from Mayo Rochester (because my insurance paid for it). And I do not remember how I handled that. After my original discharge though, we faced an 800 mile drive home, and we took many frequent travel breaks. That was quite a trip!
I was not directed to wear a mask, but I do carry one, just in case I feel the need.. I think that the transplant centers must have different directives, or maybe the rules are patient specific.
I have an annual review with my transplant dept. in Rochester every year near my anniversary month. With a combined liver and kidney transplant, it is usually a 2-3 days appointment marathon! My PCP manages my care here at home. At first, I had labs every 2 weeks, too. But as time passed that has spread to every 3 months. My PCP knows that he can communicate with my transplant team when necessary. I also have an online link to my nurse coordinator.

I think that is awesome that you are doing so well. And rewarded with a ‘no appointment ‘ month! I think your doctor will be thrilled to answer your travel questions. Let me know what he/she advises.

Rosemary

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@rosemarya

Thank you for reply. Painting is going well. The tarps are magnificent and cover everything. My biggest fear was if someone would bring in flu or something. But the only coughing from crew is asthma and smoking related. We are having a mild weather spell and we are able to let some fresh air in during the sunny days. When they have gone home at end of day, I let loose with the disinfectant aerosol and wipe all surfaces with disinfectant wipes or cleaner. Rosemary

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@contentandwell, Responding to your statement about crafts. I also could not do crafts for a while after my transplant. I lost all interest in reading, which I had done daily up to that point. I could not longer focus long enough to read the paper, do the crossword or figure out the cipher, which I had also done daily. I initially spent a great deal of time dozing on the couch while “watching” television. I encourage you to give yourself time to heal and restart hobbies (or start different ones) as you feel interest and able. Hopefully your vision will stabilize for you and you can stitch again, perhaps with a few aids. Good luck to you.

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@rosemarya

Thank you for reply. Painting is going well. The tarps are magnificent and cover everything. My biggest fear was if someone would bring in flu or something. But the only coughing from crew is asthma and smoking related. We are having a mild weather spell and we are able to let some fresh air in during the sunny days. When they have gone home at end of day, I let loose with the disinfectant aerosol and wipe all surfaces with disinfectant wipes or cleaner. Rosemary

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@risemarya Rosemary, Thank you for generous helpfulness. I have not traveled in quite a while and am now champing at the bit. I had my first HE episode on Christmas Eve, 2013, and it took a year and a half for the doctors here to diagnose my problem. It actually took a hospitalist ordering an ammonia test. My PCP, hematologist and a neurologist couldn’t figure it out. I suspect that was because otherwise I seemed so healthy. They thought it might be related to my having been a severe migraineuse prior to menopause, or possibly some type of seizure. So, not thinking of having additional episodes of HE we did go to Italy that following spring, but I have not traveled since then. We often went to CA in the fall to visit our son, and we did enjoy wine country (not anymore of course 🙁 ) but I have not gone since then. We are either going to travel somewhere warm in the spring, or to CA and onward to Hawaii in the fall with our son, he has plans to go there in October for a wedding. Right now it hinges on my getting a knee replacement. I saw the ortho doctor last week and he had an opening on one day near the end of March. I wanted to check with my transplant team to make sure my surgeon (a he) would say it was OK to do that soon, which he did. Now I can’t get through to make the appointment so I suspect those are gone. Other than that he is scheduling in June, and I prefer to not be doing rehab in the summer so I will wait until fall, probably scraping the western trip. I really am not looking forward to another surgery but this is long overdue, it was supposed to happen in February 2015 but due to low platelets it had to be cancelled.

I am impressed that your insurance paid for your flights. It never would have occurred to check on that. When I was looking into going to Mayo I checked the airfares from Boston and they were not too bad, I came very close to listing there, but things worked out well for me and I could not have been happier with my transplant surgeon.

Regarding the mask, that must be a transplant center difference because it is in the write-up they give to post-transplant patients. They did not say to change it every 20 minutes, I read that elsewhere. They stressed the mask and also if flying to get up and walk every half hour or so. I have no idea what that would have to do my liver but perhaps they are just concerned with the possibility of DVT.

The transplant at MGH is very receptive to being called for any questions or sending questions over the portal. The only down side with MGH is communications though. When I leave a voicemail it seems to take forever for them to get back to me. I’m sure that would not be the case with an urgent matter, or I hope it would not.

I do still have labs weekly, we call it visiting the Vampire. Actually the phlebotomist is really nice and with such frequent appointments she is becoming like an old friend. I think when they are comfortable that my creatanine numbers are stable that might become less frequent.

JK

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@rosemarya

Thank you for reply. Painting is going well. The tarps are magnificent and cover everything. My biggest fear was if someone would bring in flu or something. But the only coughing from crew is asthma and smoking related. We are having a mild weather spell and we are able to let some fresh air in during the sunny days. When they have gone home at end of day, I let loose with the disinfectant aerosol and wipe all surfaces with disinfectant wipes or cleaner. Rosemary

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@2011panc , Thank you for your response. I do still read but my eyesight actually changed a long time ago after I hit 40. I find I cannot just do handwork alone, I always did it and watched TV at the same time. That’s too difficult now, despite having reading glasses, plus my fine motor control has never been great and it’s worse than ever now. My handwriting is almost illegible. Right now the only “hobbies” I have are going to my health club (I did water aerobics today and then Pilates – phew, I’m exhausted!) and spending time on the computer. I love to cook too but that is less frequent these days with just the two of us. I cook, but very basic meals, and I rarely bake.

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@rosemarya

Thank you for reply. Painting is going well. The tarps are magnificent and cover everything. My biggest fear was if someone would bring in flu or something. But the only coughing from crew is asthma and smoking related. We are having a mild weather spell and we are able to let some fresh air in during the sunny days. When they have gone home at end of day, I let loose with the disinfectant aerosol and wipe all surfaces with disinfectant wipes or cleaner. Rosemary

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@contentandwell, JK, I cannot begin to imagine traveling to Italy with that HE occurring. (I had to look up hydrocephalus). It sounds like you have a little bit more surgery before you are completely well again. I think I know what you mean about not wanting surgery again, so soon. Maybe the planning and schedule will work in your favor. As active as you are, maybe rehab will go relatively smoothly for you.
I don’t know if the insurance paying is routine. I had to be flown out of ICU to Mayo Rochester, 800 miles. Mayo was the only place that could treat my condition. So, I think, the insurance payment had a lot to do with the fact that HAD to get care in Rochester. I was originally listed here, but due to complications, I had to be removed from transplant list. My transplant team got me an appointment at Mayo – but I ended up in ICU instead. It was a life – death situation. That was 8 years ago this week! I strongly suspect that all things insurance have changed since then.
I usually will use the online message portal to share medical updates or simple questions. If there is something that is a real health concern, I will make a call. And my PCP and his nurse are very supportive.
O Yes – the vampires love liver patients!
I hope you have a nice weekend. Enjoy that healthy liver 🙂
I have daffodils blooming here in Ky. I may need to cry on your shoulder when they all freeze on Sunday.
Rosemary

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@contentandwell

Rosemary, thank you for your suggestions. I am magazine-phobic at this point. Whenever I go somewhere like a doctor’s office or anywhere where I may have to wait, I bring my Nexus Tablet with me to occupy myself so as to not touch magazines. Heck, especially in a doctor’s office some people there are sick of course. I have mentioned that to a number of doctors and all thought that was smart of me, and this was well before my transplant.
I read a few years back that the most unsanitary place in a restaurant is the menu! Of course when you think of it, how many people have handled it?

JK

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@contentandwell It sounds like you are fast becoming an expert on healthy living with your liver transplant. Keep on living well and keep on sharing 🙂
I was once told about a girl who would not touch money. Now, I don’t have much to handle! but when I do, I am a firm user of hand sanitizer. (Handitizer, as I’ve heard kids say it)
Rosemary

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