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 10, 2017

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

@lcamino Lynn, I agree it is important. I was volunteering in the Food Bank before but I could not do that now, it was always standing and my knees would not take that. I think I will look for something after the summer, or perhaps later than that since we have a vacation in October and I am hoping to get a surgical date as soon as we get back to get a knee replacement.

After being at the lake this past weekend with the rough, uneven terrain there I realized more than ever how much I need this surgery. I wish I could get it done sooner but my husband does not want to cut short his time at the lake.
JK

IWantToBelieve | @IWantToBelieve | Jul 11, 2017

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

@contentandwell - Well if you really need the knee replacement (more women do than men) you will be happy with the results. It will be interesting to see how that all works while on your post-transplant meds.

JK | @contentandwell | Jul 11, 2017

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

@lcamino Lynn, I have not been overly happy with the first knee replacement, done I think in 2013 or so. I was truly desperate so i relied on ratings on some of those sites like healthgrades and vitals. Well, he may be good in other areas but he apparently uses a knee for replacement is 30 years old. Seriously, there have been improvements since then. The surgeon I am using this time, Dr. Wolfgang Fitz, actually is a developer of the knee I am getting, the Conformis and I know a number of people with that knee who have been thrilled with it. They do an MRI or something to get an image of the knee and the new one mimics your natural knee so the recovery is supposed to be easier. He offers other knees like the Depuy which is also excellent but you make the choice. I think he really has to do that so as not to be unethical since he has a stake in the business.
Naturally I am nervous because the first replacement was so unsatisfactory but I am hoping I can get this scheduled for October so I will have recovery time before my daughter's wedding, 12.09.2017. It's going to be a bit odd, she is actually getting married in Manchester on 10.31.2017 in city hall with lunch for immediate family afterwards. The big celebration will most likely be in NYC -- they thought they found a couple of places for that date but both fell through.
My daughter is rarely traditional. Her fiance is of Indian descent and I think that culture is going to be heavy influence on the celebration.

Picture is the night they got engaged, last summer.
JK

Rosemary, Volunteer Mentor | @rosemarya | Jul 11, 2017

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

@contentandwell, With so much going on, I hope you will keep us posted. We want to hear the "better and the worse" from you. You have become such dear friend.
Your daughter looks like you:-)

With all of this going on in your life, how do you plan to remember your liver transplant anniversary that is coming up? I want you to add it to our Happy Transplantiversary forum when the time comes!
http://mayocl.in/2tbA0nM
Rosemary

Rosemary, Volunteer Mentor | @rosemarya | Jul 11, 2017

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

@lcamino - That is a good comment about the knee replacement and post-transplant meds. You are already a step ahead on your transplant education.
Thanks for bringing up that concern. I never even thought about that!
Does anybody have any post transplant, knee replacement experience to share?
Rosemary

Rosemary, Volunteer Mentor | @rosemarya | Jul 11, 2017

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

Lynn, your time will come! And be sure to include some travel, too!

Rosemary, Volunteer Mentor | @rosemarya | Jul 11, 2017

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

@lcamino and @contentandwell, You are already volunteering!
I firmly believe in doing what we can, when we can, with what we can at all stages of our lives.

Right now by participating in these Mayo Connect discussions, you along with all of our Members are active volunteers who are sharing time and talents for the good of all.

Love and Hugs,
Rosemary

JK | @contentandwell | Jul 11, 2017

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

@Thanks Rosemary, I really like this board so I definitely plan to continue keeping up with it. I have a hard time keeping up with the MAC one with so many posts and thankfully not being affected by it. You too, and others have become dear friends. Don't you wish sometimes that we could just sit down together and have some tea or whatever? I am actually in a group that started way back in 1997 on aol. It was a chat room called "surviving puberty". A few of us are still in touch to this day and we even all got together once in Galveston, on the beach, off season, and I see a couple of others because one comes out here to visit her son, and one lives close to where my step-son lived -- both live in CA. He's back here now so it would be involved to see her again.

At last, knee surgery is scheduled! I wanted the week of October 16 figuring that would give me recuperation time before the wedding celebration but he had NOTHING available that week. Fortunately the Friday before it though they had a cancellation so I get home from vacation on the 11th, very late, have a breather day, and then surgery is on Friday the 13th! I'm glad I am not superstitious and I hope nothing going on with me from my immunosuppressants causes it to be put off. My creatinine was 2.29 this week. 🙁

How could I ever forget that transplantiversary? Thoughts of it and how I am now sometimes overwhelm me with gratitude. Despite not having had frequent episodes of HE I awoke every morning afraid of having one that day. It was always on my mind.

Thanks for the comment about my daughter. I love that picture of her, she looks so happy. She had a couple of difficult relationships a while back so it's nice to see her with someone who is such a good guy and treats her so well. Last summer they were in Maine at our place when I ended up in the hospital -- twice. Her fiance had only planned to stay for about a week but he ended up staying for three to be supportive of her. I am very grateful to him for that.
JK

JK | @contentandwell | Jul 11, 2017

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

@lcamino @rosemarya My transplant team knew I was looking at having a knee replacement and they brought it up, that my meds would have to be altered a bit. Actually I think it's that they were planning to modify on my anniversary in September but now I suspect they may wait until after the surgery. Of course when I had my first replacement no one knew I had cirrhosis. I had some "confusion episodes" but it took another year for the cirrhosis diagnosis. There was concern that it was biological and my neurologist had to reassure them he did not anticipate that I would have any problems. Of course then they had no idea what was causing them so I could have.
Surgery and being sick can bring one on which was why after almost a year of not having any when I got on xifaxan and then I had one we thought it might be from the difficult ablation I had, followed immediately by norovirus. My son referred to it as "the perfect storm" but my pre-transplant team felt that my cirrhosis had simply progressed and I guess they were right.
JK

JK | @contentandwell | Jul 11, 2017

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

@rosemarya Thanks Rosemary. I think of the boards as a small thing but anytime I can help someone going through the process I am more than happy to do so. I feel a huge need to "pay it forward".
JK