This and That and Talk - My Transplant
As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all - a new life! We don't always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.
Drop in and say 'Hi'. You are welcome anytime.
What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?
Interested in more discussions like this? Go to the Transplants Support Group.
I don’t know why the transplant dr I saw seemed pretty relaxed about my traveling, but then again I think of all of the people we come in contact with while traveling through the halls and elevators at Mayo.
Actually, I asked about a mask and he said that wasn’t necessary, but it was up to me. I mentioned that I’ve seen several patients with masks in the transplant dr appt’s waiting area. He said those are mostly cancer patients. I did see recently that the window seats have less germs, I also have a pretty ID bracelet with my Mayo patient no., contact info etc on it, just in case.
@cmael My transplant team told me not to travel domestically for 6 months, and a year internationally. I think they take a hard line but if you are doing well they will give you some leeway. As it turned out there was no pressing need to travel within that time so I did no travel for a year.
Were you told to wear a mask when flying? I got some at CVS that had an antiviral coating.
An interesting thing I read somewhere, not specific to post transplant patients - the window seats have fewer germs than the aisle seats! There is a larger concentration of germs floating around where there is more open space. Unfortunately I have somewhat of an incontinence problem so if I sit by the window I have to disrupt people.
JK
@cmael it's funny how the wait for the transplant is so overwhelming but then the thought of life afterwards is so daunting. And there is the thought of the actual surgery and recovery. I am glad that so many who have already gone through the whole process assure me that life afterwards is so beneficial. There are a lot of wonderful people here to encourage us to stay strong.
@taarthi, I wonder if you might benefit from some of the relaxation tips that members have shared in the Sleep Health group on Connect (https://connect.mayoclinic.org/group/sleep-health/)
I found this discussion particularly helpful with quite a variety of tips and approaches
- Meditation prior to sleep https://connect.mayoclinic.org/discussion/meditation-prior-to-sleep/
No, our grandchildren are all grown. My family knows that if anyone is sick, they need to stay away. However, that being said, my grandson got married in California 2 1/2 mos after my transplant. I asked my nephrologist if it would be alright for me to go and go by air. He said that would be ok. I go out and about quite a bit and worked as an election judge at a nursing home, the primaries and the general election. I haven’t been sick at all, but of course try to be cautious. We also have two dogs and two cats. I wash my hands often. I hope that helps with the fear of living with a transplant.
cmael, I don't remember reading this anywhere - Does your daughter have any young children? This seems to be another thing that taarthi is concerned about.
😊 I want to make your life easier! With Connect's new system, you don't need to copy the @name because the person that you reply to will automatically get the email 😊
mauraacro, It is always good to hear from you. Your experience is our best teacher. Thank you for sharing it.
@taarthi @rosemarya Rosemary, you sure have that right. I was exhausted, taking two naps a day. Of course it reached a whole different level when my hemoglobin and hematocrit went dangerously low. I am sure I have mentioned it before, but they took me to Boston in an ambulance for fear of something happening- I was told at the local hospital the counts were so low I could have had a cardiac arrest.
I actually felt ok and enjoyed the ride chatting with a very nice EMT. I had been about to serve dinner to guests when I got the call that I had to get to the hospital immediately. Word somehow got to MGH that I had guests for dinner. One of the woman doctors was stunned and said if her counts were as low as mine she would have been flat on her back! Admittedly I couldn’t go up the whole flight of stairs without stopping to rest.
I had a few days of rest in the hospital having blood transfusions while they tested me for everything trying to figure out the cause.
JK
taarthi, Have you discussed the anxiety and lack of sleep with your transplant team? They might have some ideas or options for your particular situation.
I did not want to think about the surgery, either. So I tried to envision myself going into the surgery, going to sleep, and waking up. Since I was so very tired all the time, the idea of a long sound sleep was appealing to me.
How are you doing physically? Are you feeling okay? Are you able to be partly active with your daughter?