This and That and Talk - My Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Apr 9, 2017

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.

JK | @contentandwell | Jul 15, 2017

In reply to @contentandwell "@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications..." + (show)

@rosemarya Rosemary what are the physical symptoms you were told to watch for? No one told me that if I recall correctly. My husband and I came to realize that for me the symptoms were a very upset stomach and extreme fatigue but I don't know if that was typical or just me.
JK

Teresa, Volunteer Mentor | @hopeful33250 | Jul 15, 2017

In reply to @contentandwell "@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications..." + (show)

@rosemarya @lcamino and @contentandwell, I agree. You all give of yourself to support and encourage other people and that is the greatest volunteering task! Teresa

JK | @contentandwell | Jul 15, 2017

In reply to @contentandwell "@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications..." + (show)

@lcamino One day on the way to Boston to see my transplant surgeon, and feeling great, I was thinking about how gratifying it must be for surgeons like him to see patients before transplant looking wholly miserable and then a few weeks later to see them on top of the world. Or at least that was me. I blurted it out to him and he got a little smile and said it really is gratifying. I can only imagine the positive feedback they must feel from doing this. I think some surgeons begin to think they are God but thankfully my surgeon does not seem to be like that.
JK

IWantToBelieve | @IWantToBelieve | Jul 15, 2017

In reply to @contentandwell "@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications..." + (show)

@contentandwell -
Yes, rising creatinine is typical with my kidney disease and continued decrease in kidney function but I actually do not know what the creatinine is when you start dialysis. My doctor follows my creatinine but it is my estimated GFR that seems to dictate everything. I'm embarrassed to say that I really do not know why because the GFR is just that, estimated. I'm going to ask next month!

I'm to meet with the transplant team when my GFR is 20 with the plan of getting a transplant before it reaches 15 and that would typically take me one year. The "advantage" of PKD is that it is a slow digression that is somewhat predictable. If I don't have a transplant I would start dialysis anywhere from a GFR of 15 or 10 depending on my symptoms (nausea, vomiting, leg numbness, problems with taste, retaining fluid, uncontrollable blood pressure, shortness of breath etc.). Thankfully I have none of the symptoms of kidney failure except fatigue and bad numbers (high creatinine and low GFR) and from what I understand that is somewhat unusual, thus a blessing. I thanked God today as I finished a 16 mile bike ride on my tuned up bike. It was a hilly ride so lots of intervals and I rode 1-2 mph faster than usual!

IWantToBelieve | @IWantToBelieve | Jul 15, 2017

In reply to @contentandwell "@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications..." + (show)

@contentandwell - Thank you for sharing and reliving a truly frightening time. I understand better know what you were discussing before. I had no idea. Sounds like God was looking after you.

IWantToBelieve | @IWantToBelieve | Jul 15, 2017

In reply to @contentandwell "@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications..." + (show)

@contentandwell - I can't relate to your situation with your daughter but the consolation is that she is happy and it sounds like they are good for each other. Being the mother of the bride, and traditional party that would plan the wedding, you might feel like a fish out of water at the second ceremony so I'd recommend trying to focus on her happiness and that she is marrying someone that cares for her and treats her well.

JK | @contentandwell | Jul 15, 2017

In reply to @contentandwell "@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications..." + (show)

@lcamino Good for you on the bike ride, Lynn. You and are similar in that I felt better than most with my cirrhosis.
JK

JK | @contentandwell | Jul 15, 2017

In reply to @contentandwell "@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications..." + (show)

@lcamino You are absolutely right Lynn. Thanks. I just hope he does not become domineering after marriage.
JK

IWantToBelieve | @IWantToBelieve | Jul 15, 2017

In reply to @contentandwell "@rosemarya @hopeful33250 @lcamino Thanks to all of you for all of your encouraging words. This really..." + (show)

@rosemarya - you are right. I need to celebrate without food more - like a bike ride! I agree that prayer of thanksgiving should go with any routine.

IWantToBelieve | @IWantToBelieve | Jul 15, 2017

In reply to @contentandwell "@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications..." + (show)

@contentandwell - From what I have read recovery from being a liver donor is more extensive. Recovery from being a living kidney donor is usually 2-3 days in the hospital and 3-6 weeks to get back to normal routine. Of course, this would be longer if you had to return to a job that entailed physical labor. There might be a limit of how long (2 weeks) before you can drive but I'm not sure. Either way, it is not as difficult a recovery as a liver donor. A donor's kidney is functioning at 70% almost immediately and I believe 80% within 3 weeks. I know the person's kidney enlarges to compensate for donating a kidney but I don't know if it ever gets to 100% of function - I would hope so. The donor does run the risk of having high blood pressure in later years and obviously there is a risk if for some reason their one kidney starts having problems so they would go to the top of the transplant list if they needed a kidney for some unfortunate reason.

All in all it is a major gift and not convenient. Ideally I would feel best if the donor no longer had children in the home to worry about and did not work so lost income and missing work was not a stressor. The more I learn about being a donor the more I think I can't ask someone but my husband says he will have no problem asking once I need to meet with the transplant team.

I'm not sure if I ever explained that my husband can not donate due to medical reasons (it really upsets him), my one daughter has the disease and my oldest daughter offered to donate her kidney and I asked her to save it for her sister. All my other blood relatives either have PKD or have already donated a kidney.