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Mentor

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.

IWantToBelieve | @IWantToBelieve | Jul 7, 2017
In reply to @contentandwell "@hopeful33250 Teresa, I know this too well, how do you think I got to @ 235..." + (show)
@contentandwell

@hopeful33250 Teresa, I know this too well, how do you think I got to @ 235 at one point!
JK

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@hoepful33250 and @contentandwell - Unfortunately I can relate to this also. I was a skinny thing until I started working full time after graduate school. Before I ate whatever I wanted but I was naturally active enough that it didn't matter (I never even put on the freshman 15 or any weight during college - played on basketball team). Then our first daughter died, my dad died, our second daughter was diagnosed with AS, our third daughter almost died after delivery (turned blue in my arms) and then was diagnosed with PKD and eventually IBS. During all that I managed but was constantly putting out fires, avoiding fires, driving to doctor's appointments, and more stressed than I realized because I didn't know any other life. Life never settled down and my husband and I ate out a lot (busy driving 4 hours round trip to the doctor) so dinner was not cooked, putting the kids needs before mine etc. Things compounded, bad habits developed, and adding 10 lbs a year didn't seem bad at first because I was very thin to start. Now I'm kicking myself. This morning I've been responding to Connect emails so I sit in exercise clothes putting off my exercise routine. I always feel better after exercising (better physically and emotionally) but I still struggle to make it a daily priority. I realize, as I reread this, that I have made a lot of excuses but I realize I have also made a lot of bad choices that I'm trying to change.

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IWantToBelieve | @IWantToBelieve | Jul 7, 2017
In reply to @contentandwell "@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications..." + (show)
@contentandwell

@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications I could and not take if it was a fungus. They told me that but did not mention any possibility of it being weakened nails from the medications. I want to ask them about using lamosil also, so I will call or ask on the portal about those two things.
This is never an issue I would have thought I would be discussing on this forum but I probably brought it up wondering if anyone else had a problem from the typical immunosuppressants. Thanks for the feedback to all. I guess I will ask but then if they are not sure I will continue with the treatment. I have already paid for it up front.
The bigger issue now is despite my drinking massive amounts of water my creatinine continues to go up. On Monday it was up to 1.78. I am sure I will be getting a call from MGH tomorrow. They cannot possibly want me to drink even more water -- I am close to 100 oz a day now! I find the days I go to the pool the easiest to get all of that water in. I do one of my 3.5 cup water bottles while in the water, refill it and do a second and then drink more in the evening to finish off the large requirement -- glug...glug...glug.
JK

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@hopeful33250 - I heard that about the increased flights too but I have yet to see any change. In fact, American (only American and United fly into Rochester) has cut out a flight (7pm evening flight to Chicago). That means when I need to see the doctor, not just the study co-ordinator, I must spend the night which is costly (hotel and dog care - or my hubby works from home if possible),plus I'm not there for my teenage daughter after school. Mayo is FANTASTIC for letting me choose my appointment times (literally) based on my flights so I can get in and out in a day. It is tight but I have a system worked out as long as the airlines are not delayed (which has not happened in the last 6 trips!). Thankfully I have been flying enough, and have an American Airlines credit card, so when I missed my connection in Chicago yesterday (learned I can run down a jet bridge and past a few gates, and that it really hurts my kidneys) they automatically rebooked me on the later flight. It was rather frustrating because I could see the plane at the gate for 10 minutes but the jet bridge had been pulled away from the plane and they would not let me board.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 7, 2017
In reply to @contentandwell "@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications..." + (show)
@contentandwell

@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications I could and not take if it was a fungus. They told me that but did not mention any possibility of it being weakened nails from the medications. I want to ask them about using lamosil also, so I will call or ask on the portal about those two things.
This is never an issue I would have thought I would be discussing on this forum but I probably brought it up wondering if anyone else had a problem from the typical immunosuppressants. Thanks for the feedback to all. I guess I will ask but then if they are not sure I will continue with the treatment. I have already paid for it up front.
The bigger issue now is despite my drinking massive amounts of water my creatinine continues to go up. On Monday it was up to 1.78. I am sure I will be getting a call from MGH tomorrow. They cannot possibly want me to drink even more water -- I am close to 100 oz a day now! I find the days I go to the pool the easiest to get all of that water in. I do one of my 3.5 cup water bottles while in the water, refill it and do a second and then drink more in the evening to finish off the large requirement -- glug...glug...glug.
JK

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@lcamino Wow, it sounds like you really have a system worked out. I was pleased not to have any flight delays as well. I'm sorry to hear that the extra flights have not been added yet. Sounds like it is needed. Teresa

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 7, 2017
In reply to @contentandwell "@hopeful33250 That's a good approach. The last couple of years we have seen a lot of..." + (show)
@contentandwell

@hopeful33250 That's a good approach. The last couple of years we have seen a lot of him and his family in Maine at the lake because he was pretty much telecommuting but now he has joined a law practice in the town where he lives so he will be there less. When our paths do manage to cross there though I may try your approach, it's just how to start it off that will be tough. I brought it up to my husband today during our drive to MA to go to a funeral and he didn't sound totally opposed but he figures people will do what they will do in regard to that. I think in my position, having had problems that I am sure stemmed from my weight, I might be listened to more than just anybody. He is a very smart man, PhD in computer sciences, and then when he got tired of software he went back to school to become a lawyer! I am inclined to think that smart people usually do listen more.
JK

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@lcamino I agree, here is to seed planting whenever possible! Teresa

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 7, 2017
In reply to @contentandwell "@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications..." + (show)
@contentandwell

@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications I could and not take if it was a fungus. They told me that but did not mention any possibility of it being weakened nails from the medications. I want to ask them about using lamosil also, so I will call or ask on the portal about those two things.
This is never an issue I would have thought I would be discussing on this forum but I probably brought it up wondering if anyone else had a problem from the typical immunosuppressants. Thanks for the feedback to all. I guess I will ask but then if they are not sure I will continue with the treatment. I have already paid for it up front.
The bigger issue now is despite my drinking massive amounts of water my creatinine continues to go up. On Monday it was up to 1.78. I am sure I will be getting a call from MGH tomorrow. They cannot possibly want me to drink even more water -- I am close to 100 oz a day now! I find the days I go to the pool the easiest to get all of that water in. I do one of my 3.5 cup water bottles while in the water, refill it and do a second and then drink more in the evening to finish off the large requirement -- glug...glug...glug.
JK

Jump to this post

@lcamino I am happy that you took the opportunity to treat yourself;-) Rosemary

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 7, 2017
In reply to @contentandwell "@hopeful33250 Teresa, I know this too well, how do you think I got to @ 235..." + (show)
@contentandwell

@hopeful33250 Teresa, I know this too well, how do you think I got to @ 235 at one point!
JK

Jump to this post

@lcamino, You said that you struggle with making exercise a daily priority - Maybe daily is too demanding on both your body and your time. For example, you do have a kidney condition and that is affecting your body in many ways.
I have learned to exercise on only 4 days of the week. My goal is 2 on, 1 off , 2 on , and 2 off(SatSun). I feel better because I am not so tired. And it gives me the freedom to be flexible and change the days if I want. I feel less stressed because it relieves the guilt of an off day.
I give you permission to delay your e-mail correspondence until after you exercise!
Hugs,
Rosemary

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 7, 2017
In reply to @contentandwell "@rosemarya @hopeful33250 @lcamino Thanks to all of you for all of your encouraging words. This really..." + (show)
@contentandwell

@rosemarya @hopeful33250 @lcamino Thanks to all of you for all of your encouraging words. This really is a nice haven to share the good and the bad. Thankfully it seems like most of us are doing pretty well now - Lynn you are like I was, going strong with a transplant in the future. When I have time to read the posts on MAC/MAI I feel so bad for the people suffering from that, it sounds horrible.
I really do feel so fortunate to be where I am at. I went to a wake today for the last aunt from my mother's generation. Of course I saw many relatives and every one thought I looked great, which compared to how I looked before I guess I do. I never realized it at the time that although I never had a yellow cast to my skin I did look pretty pale and colorless. Of course a lot of their comments were brought on too by the fact that I have lost much weight too.
JK

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@lcamino, No guilt allowed!
We are all number watchers, too! And along with you we celebrate even the teeniest improvement. And we worry at the teeniest worsening numbers. We also know that numbers can fluctuate, and that is head spinning.
I am happy that you have experienced an improvement at Mayo last week! Yippee!! Is that when you treated yourself to the earrings and lobster roll?! .
Now, as far as the teaching thing - you are teaching us so much, too. Sharing goes both ways. And the conversation is fun, too!
Next week is my number watching week as I get my labs drawn.
Keep on with those baby steps. You will eventually get where you are headed.
Rosemary

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herbswife | @herbswife | Jul 8, 2017

My husband has just been diagnosed with liver disease in the last month, I am desperately trying to avoid a transplant through health and unfortunately the medication we have to take due to all of the symptoms and effects. Can someone please help me understand the day to day struggles like uncontrollable nausea. At this point he can't even take all the medications correctly because he hasn't been able to eat for almost a week. Nausea meds seem to maybe help a little but not enough to get the nutrition that is necessary.

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23 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 8, 2017
In reply to @herbswife "My husband has just been diagnosed with liver disease in the last month, I am desperately..." + (show)
@herbswife

My husband has just been diagnosed with liver disease in the last month, I am desperately trying to avoid a transplant through health and unfortunately the medication we have to take due to all of the symptoms and effects. Can someone please help me understand the day to day struggles like uncontrollable nausea. At this point he can't even take all the medications correctly because he hasn't been able to eat for almost a week. Nausea meds seem to maybe help a little but not enough to get the nutrition that is necessary.

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@herbswife, Hi, I'm Rosemary. I am a volunteer mentor here on Mayo Connect, more important is that I am a liver/kidney transplant recipient. I know exactly how miserable your husband is feeling right now because in 2008, I was where he currently is at. I am deeply aware, also of the feelings and emotions that you and he are experiencing. Please accept my welcome to our community. We are all here to support and to help each other as we share our experiences.

My first response is, Have you discussed this with herb's doctor? We always encourage communication with our health provider.

What is the liver disease that your husband is diagnosed with? This might better assist us with our conversations.
Rosemary

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 8, 2017
In reply to @herbswife "My husband has just been diagnosed with liver disease in the last month, I am desperately..." + (show)
@herbswife

My husband has just been diagnosed with liver disease in the last month, I am desperately trying to avoid a transplant through health and unfortunately the medication we have to take due to all of the symptoms and effects. Can someone please help me understand the day to day struggles like uncontrollable nausea. At this point he can't even take all the medications correctly because he hasn't been able to eat for almost a week. Nausea meds seem to maybe help a little but not enough to get the nutrition that is necessary.

Jump to this post

@herbswife, I have started a new Transplant Discussion named "How Do I cope When I Feel Awful".
http://mayocl.in/2uW4FXt
Every transplant person I have ever talked to has mentioned this same issue and I do not know why we have not created this discussion before now! I invite you to check in there for some responses. And I want to encourage you to post your question there, too.

I look forward to continued conversation with you.
Rosemary

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