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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?
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@hopeful22350 - I have really noticed, even though I drink a lot, that when on my study medicine I have to drink a lot BEFORE I exercise, WHILE I exercise (especially when biking outside), and afterwards (watermelon is my favorite after a bike ride). Even if it is cool (65 degrees in early morning and I'm wearing shorts and a t-shirt) I seem to fizzle exercising outside and if I don't push the fluids, even when I don't feel thirsty. I've been told that if you can't urinate after a bike ride than you didn't drink enough. That is not applicable to me now with the med I take so I use the second "measurement" which is that urine should be colorless to light yellow as a indicator of being properly hydrated. I guess what I'm saying is that there are several ways to ensure that you are well hydrated and to be extra vigilant when exercising outside, especially in the sun and heat.
Sorry but kidney health is all about blood tests and urine tests so it's what I know.
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1 Reaction@rosemarya, @hopeful33250, @contentandwell, @colleenyoung, @2011panc, and anyone I've missed. This is a prime example why I turn to the Mayo website with medical questions. Clear, concise, and thorough and if I still have questions I go to my doctor/s since they know my situation. Many times my question is answered and I am calmed and sometimes it gives me good questions for my doctor/s.
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1 Reaction@lcamino I'm glad to hear you say that about Rochester, MN. I was there in May with my daughter for meetings. We were so impressed with the city. The restaurants and shopping were great. When we were coming from the airport to the hotel the driver was saying that the airport is going to increase their flights into Rochester later this year to accommodate all of Mayo's patients. That certainly says something about the clinic. Teresa
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1 Reaction@lcamino How great! I did not know that. I'm in a northwest suburb of Detroit!
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1 Reaction@hopeful33250 - we are almost neighbors!
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1 Reaction@contentandwell - Well I have never been an alcohol drinker because I have known about my kidney disease since I was 20 so I have intentionally avoided it. But I will say that even drinking water versus pop can save a lot of money. I prefer a Coke but I'm to avoid caffeine (bad for PKD) and water is more thirst quenching. I did not know lobster is high in sodium, not that it is something one orders in Indiana. Is it high in sodium because of the way it is prepared or because lobsters live in salt water? I certainly do partake when I visit family on the east coast because I love it! Incidentally, yesterday at Rochester Mayo there was a street festival (First on Thursday) and I had a nice break walking the streets, perusing local artists (I bought a neat pair of earrings) and had a lobster roll. It wasn't like one from the coast but it was darn good considering I was in Minnesota! I continue to be amazed at the quality of restaurants in Rochester for being in the middle of nowhere. It's a happening city!
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1 Reaction@lcamino Thanks for sharing your news regarding your appointment yesterday. I'm so pleased that you felt encouraged. As you said, It is good for the psyche. Please keep sharing with us. We are so glad that you are sharing with this discussion group - we all learn from each other and you are contributing to our learning as well. Teresa
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2 Reactions@contentandwell - WOW! You are getting up more than I do! I'm usually up every 2 hours and much of that is due to the medicine. I take 3 pills in the morning and one 8 hours later vs. at dinner time so the idea is that time frame will help me sleep better. But, I still drink a lot (habit and thirsty) so I'm still up every 2 hours. I think the interrupted sleep really impacts my energy level during the day. Do you feel that way? It's a good day if I don't take a 30 minute to 1 hour nap. The past month I forgot my afternoon meds twice and those evenings I slept so much more soundly and woke up every 3 or 4 hours which made such a big difference. Because my sleep is interrupted I find I need to sleep longer which, during the school year, is not possible so that leads to more naps. In the summer I sleep longer so I seem to not nap as much. I'm not sure how you are functioning during the day. I'll stop feeling sorry for myself now.
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1 Reaction@contentandwell - What is MAC/MAI?
@colleenyoung, @contentandwell, @rosemarya, @hopeful33250 - I feel a little guilty sharing this because I'm still pre -transplant but I had a very encouraging visit at the Mayo Clinic in Rochester yesterday. I only met with the study co-ordinator but she shared blood test results from last month. Dr. Torres did a more accurate test for my GFR and it improved! Last month my GFR was 22, in the local ER its was 19, and with the more accurate test it was 26! The higher the better. I see the transplant team when it hits 20 so I am motivated to get back to regular exercise and eating healthier (confession - I was at such a plateau I had started to give up and not try because at least I was staying stable with my weight). It's amazing what a few numbers will do to one's psyche. People typically lose 5ml a year so if that is the case I would be at a GFR of 21 in one year which gets me past my youngest daughter's graduation (my hope/prayer). But, because I'm in a study which is using Tolvaptan (a med doctors know works but are trying to get approved by the FDA) I have hope that I can get my youngest off to college before my life becomes consumed with the transplant process. I'm now feeling silly for being a part of this group but you are ALL teaching me so much. I feel like I will take more in now than when I'm the transplant patient. Already I feel like my health is creeping into my mother duties so I can only imagine what it will be like in a year or two.
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2 Reactions@contentandwell - speaking from someone whose kidneys are failing I am not to use any medication without doctor's approval, which is obvious since most meds are filtered through the kidney and virtually everything you read says you should not take it if you have kidney issues. My nephrologist at Mayo does not want me taking Tylenol or Motrin because of the "health" of my kidneys but my daughter's kidneys function fine now and she is allowed to take Tylenol and Motrin on a limited basis when absolutely needed. I don know that Motrin, or any NSAID (non-steroidal anti-inflammatory drug), is harder for your kidneys to process.
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