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  #1  
Old Fri Mar 30, 2018, 07:52 AM
Rarity Rarity is offline
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Question, please

Hello

Hope everyone is doing well. My question is after discharge post transplant. Those of you who were not close to your transplant center, but within a couple of hours driving distance. What are your experiences?
Curious as it is not required to stay within a certain mile radius post transplant? (about a month) It was stated that he can go directly home. Follow-up will be once a week until day +100. Thanks in advance.
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  #2  
Old Fri Mar 30, 2018, 07:08 PM
Ruth Cuadra Ruth Cuadra is offline
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When I left the hospital 44 days after my transplant, we were allowed to go home, which was 35 miles away. For the first several weeks, I had to go back to the hospital twice a week for blood tests and to check in with the doctor. Gradually, the schedule was reduced to once a week, then every other week, then to once a month. While the drive was not short, we were used to doing it for a couple of years between my initial diagnosis and the point I started the transplant conditioning. I was very tired for the first months post-transplant so I slept in the car a lot and even in the waiting room(s) at the hospital. We were cautioned to come back immediately if I ran a fever, had difficulty breathing, or any other symptom that was out of the ordinary but nothing untoward developed. Keep in mind that all of this happened nearly 20 years ago. I'm aware that protocols have changed and patient care has improved so that people are able to manage on their own farther from the hospital and with less frequent check-ins.

Hope this helps.

Ruth Cuadra
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Old Fri Mar 30, 2018, 07:16 PM
Callie Callie is offline
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My dad had to be within 15-20 minutes of the hospital, so he & I rented an apartment up through Day +84 when he was "allowed" to go home. Honestly, I think it made his recovery smoother, as there was nothing to focus on except getting better. While his first 100 days went very well (we were lucky - no ER visits and very little GVHD, but as the caregiver I appreciated being close just in case...), I don't think he'd have called them easy (very non-linear recovery) and he still had appointments every Mon/Thurs. He got an in-home magnesium drip (I was able to clean his port and administer), we slowly built up our walks, and we played lots of cards. Had he been at home, he would have been concerned with all the normal house chores, etc. instead of just resting and gaining strength. And - it was a lot easier to control the cleanliness of the apartment, visitors, etc. I will say, though, I had it easiest (and I was most fortunate to be the one to get to be with him...I wouldn't trade those three months with Dad for anything) being his caregiver. My mom and sister had it harder, as they traveled back and forth (about a 45-60 minute drive), juggling work, their dogs, my nephews, etc.

If you have any questions about transplant or the recovery, please ask! I wish you both the very best!!
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Last edited by Callie : Sat Mar 31, 2018 at 09:44 AM.
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Old Sat Mar 31, 2018, 07:14 AM
lisa3112 lisa3112 is offline
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Hi, I had to be close to my hospital because I had to have bloods and magnesium infusions 3 times a week for the first month. After a month I was allowed to stay with my mum, which was 2 hours away. My appointments then dropped down to one a week. But it was a huge day because I had to get bloods done in the morning and then wait around all day for appointment and blood results.
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  #5  
Old Sat Mar 31, 2018, 06:54 PM
Rarity Rarity is offline
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Thank you for your reply Ruth, Callie & Lisa. Everyone is more than helpful here.Things do change. It depends on individual centers too. Ours is about 3-4 hours away and concerns us. Maybe they'll have more on this at the next visit. Pre transplant testing is done and waiting for the results to say it's a go and a date.

Thanks again,
Rarity
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  #6  
Old Fri Apr 6, 2018, 09:07 PM
Heather8773 Heather8773 is offline
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Hello
Ours was about 45 min w out traffic and 2 hours with. It wasn’t required we stay closer but strongly communicated that if anything seemed off we needed to call and get to the ER hospital that they were affiliated with.

That made me nervous bc I’m a crazy person on a good day.. I was nervous about everything and everyone and any unseen germ outside of the sterile room my husband was in for the first 30 days.

We found an apartment complex with in a few miles told them the situation and they agreed to let us rent one of their Model apartments by the day but knew we were aiming for 60 days.
I had my mom rotate out w me through the week so I could work

Be the match and the leukemia foundation were kind enough to give us grants that helped pay for that. The hospital gave us the forms to fill out but I’m sure they are online

He had to go back 3 days a week for the first few months so all that back and forth also made me nervous about anything being exposed to him so that also made me decide to look for something closer.

I think my fears were probably over the top and extreme looking back but I’m just being honest. I couldn’t help how I felt.

I hope things on yalls journey go smoothly
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim

Last edited by Heather8773 : Fri Apr 6, 2018 at 09:36 PM.
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  #7  
Old Sat Apr 7, 2018, 06:20 AM
Rarity Rarity is offline
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Hi Heather,

Thank you for giving some more insight. I can relate on the nerves with the situation. I think this is probably a normal reaction and some react more than others (being over the top) I guess you can't be too careful and to be expected.

There are days I am a little more at ease than others. I try to handle as much as I can to lessen his burden. There is so much that has to be accomplished beforehand, that it gets overwhelming. I know this is normal getting prepared and it will get better and keep on saying there is a light at the end of the
tunnel
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