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?

@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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@2011panc I googled info about spinach and baby spinach and I believe our friend was incorrect. The info was a bit confusing but I think the gist of it was that spinach has more fiber than other greens and even more when it is cooked! I was told I could eat some of the other vegetables because cooking breaks down the fiber but apparently that is not true for spinach. I am going to do some more googling to try to get a complete appraisal of fiber in all of these greens.
Thanks for the other info, I do have a gastro, but he too is in Boston. I need to go to him soon for a yearly endoscopy. If they do find a problem with your anal muscles is there anything that they can do about that?
I definitely agree, I plan to try the adjustments independently, that’s the only way to definitely know which is helping/hurting.
JK

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@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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@rosemarya Thanks Rosemary. When it gets sort of personal like this I always wonder if it should be taken to a one-on-one discussion but I can see where others might possibly from the info also. Some of it can be embarrassing to air publicly though.
JK

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@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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@contentandwell, I think that you have presented a very interesting thought. You are correct about Connect being a place to help others thru sharing our experiences. However, it is up to you (or any member) to decide if information becomes too personal or uncomfortable to share publicly.
Each one of us has a different background and comfort level. So, we trust your judgment to decide whether to send a message thru the private messaging. As an example, I have had some private messages that have evolved into public responses; and some public messages that have involved some private messages.

Thank you JK for the insights that you are providing here on Connect.
Rosemary

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@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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@2011panc, Your compassion and your desire to help others goes beyond ‘useful’ as far as I’m concerned.
It is amazing how we have learned to adjust our lives and our focus after our transplants. I love reading about and talking to others who have shared similar life experiences. I am learning so many helpful ideas in addition to meeting virtual friends.
Thank you for being here. Rosemary

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@2011panc

@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

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Hi @rosemarya! I’m sorry for the late response but I’m quite behind on desk work. Add that my laptop went to my college student who spilled coffee on hers and it made things worse. That means I have to head to the chilly basement to get my computer/desk work completed.

My other big excuse is that I’m exercising most days and that is time consuming! No wonder I have not done it to date. If I go to the YMCA then with transportation, exercise, and shower I have spent 2 hours of my morning – yikes! I have not lost weight but I know I have gotten stronger, feel better, and my cardio gets better each time I exercise. I got a steroid injection in my plantar fasciitis and that has really helped. I still need to stretch daily (I usually only do once instead of 3x) and need to wear the splint at night since I have stepped up my exercise routine.

I usually do a combination of the rowing machine and the elliptical trainer for one hour. I started at 30 minutes but was not losing weight and my Mayo Clinic app has taught me I need around an hour 5-6 times a week to lose 1-2 lbs per week. Now that the weather has gotten nice, and my hubby has jumped on the exercise wagon, we are road biking. 10 miles is the farthest we have gone but the trails are hilly so I get good interval training. I love being outdoors and I really like having my husband exercising with me.

I had a bit of a setback with an ER visit for heart palpitations. I still need to follow up with a cardiologists but it looks like it is the lovely change of life. Who knew 24-40% of women experience heart palpitations during perimenopause? I didn’t! Actually my husband wondered if my flushed moments and dizziness was related to perimenopause and that research taught me about the palpitations. That was scary (my husband was out of town) but I was give the green light to keep exercising so I got on my bike and increased my intensity and frequency.

I was having constant morning nausea that would pass after I had a bowel movement. It was wasting 1-2 hours every morning. I thought it was everything pushing on my kidneys but my Mayo doctor didn’t think so. For a last straw he had me take all my meds at bedtime (except the study meds) and it worked! He will be surprised because he said the meds I was taking should not cause nausea. Glad he is a good problem solver!

I go to the Mayo clinic for my research study visit on June 6 and I’m a little worried. My GFR at the ER was 20 and it was 19 with my local nephrologist. I’m hoping the Mayo results are better or it looks like it’s time for me to meet the transplant team. I really wanted to wait until I was able to host my youngest daughter’s graduation party (June 2018) and get her off to college but that might not work out.

On an exciting note, while getting my bloodworm locally for my local nephrologist the phlebotomist offered to be tested to be a kidney donor for me! All my other family members have the disease (PKD) or have already donated. My youngest daughter has PKD so when my oldest offered me her kidney I told her to save it for her sister. My husband is unable due to other health issues.

Oddly enough my blood pressure is insanely low (98/65) the last I took it. It used to be 105/72 range before I started exercising. Due to a study my daughter was in I take 5mg of enalapril but I’m going to ask to come off it because I’m getting dizzy when I’m exercising. Crazy that my kidneys are at the end of their life and my blood pressure is so good, which is why I was stunned when I learned how close I was to needing a transplant.

That is enough blabbering on my part. Thanks for listening! I have appreciated learning from all of you as I have read all the posts even if I forget to “like” comments and I haven’t participated much (this is the first online chat I have participated in). Let’s just say I’m enjoying as much sushi as possible as I’ve learned that will be off my menu post transplant.

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@2011panc

@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

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Hi, @lcamino . My name is Lisa, and I’m a new moderator on Connect. Good for you with your exercise routine–that’s terrific!

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@2011panc

This is in response to diet and weight loss through the transplant process. Prior to transplant (pancreas) I lost a great deal of weight due to gastric issues. Ironically while still having giant yoyo blood sugars! At the time I was malnourished and losing hair also. Following transplant I was unable to wear any of my previous clothes because of distension and tenderness in my stomach. Immediately following the transplant I continued losing weight for a while and then gained a little back. Over the last year I have been working on losing again in hopes of getting a better bmi and into the normal range of weight/height/age. I am now down 3 dress sizes and on the brink of needing to shop for the next smaller size. I hope to lose another 20 pounds for a total loss of 90 pounds from my highest ever weight. I am on 5 limiting diets and eat when I am hungry rather than on a schedule. I drink a great deal of water, black coffee, herbal tea and chicken broth. I tend to run low on sodium, so the chicken broth helps with that. Thank God for small favors! lol I limit dairy, fiber, oxalates, fats and carbohydrates. The carb cuts are mostly from dropping potatoes and things made with flour. I also rarely eat eggs or drink soda, as they seem to upset my stomach. I do not have gluten intolerance, I just feel better without the flour products. We mostly cook from fresh at home, so that cuts out a great deal of preservatives also and help me feel better. Exercise is difficult because of trembling and balance issues, but I do my best to keep up with yoga, stretching and walking. I’m thinking of attempting swimming laps, but just have not made that commitment yet. I encourage everyone to do your best and be mindful of what your hands are doing and what you put in your mouth. If you eat something you shouldn’t have . . . we all have. Just start over. We can do this!

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@2011panc Sorry for my late response. A good resource is Spondylitis Association of America at spondylitis.org. They are the only organization devoted completely to AS and their information is accurate and not sensationalized. I have no idea what your situation is but it is my understanding that having osteoarthritis as a teen is highly unusual and more likely to be an autoimmune disease which would be one of the 100 types of rheumatoid arthritis. Even if you do have osteoarthritis I would recommend seeing a rheumatologist for treatment. If you have had symptoms since you were young then X-rays should assist with diagnosis but much of diagnosing arthritis, if it is not osteoarthritis, is very much an art by the doctor. They basically diagnose by elimination and much of that is with a thorough exam and answering many questions because there are many types of arthritis that can not be diagnosed, or ruled, out with bloodwork. If you are early in the disease process joint damage will not show up with imaging. That is enough from me because I’m not a doctor. I’m pleased you are going to follow up with a rheumatologist to be sure. It is not unusual for people with AS to wait 10-15 years for a diagnosis and it is often not negligence of the doctors. Best of luck as you manage your health. It is a tiring and time consuming task but you are your best advocate. I get it. I’m following up with a cardiologist regarding heart palpitations that are probably nothing but it’s not worth finding out the hard way that I’m wrong.

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@2011panc

@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

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@lcamino, You are a powerhouse of energy! And all the while having to deal with so many extra activities. I’m sorry that you have had some medical incidences, but I’m mostly happy for you that you are getting the support and guidance from your health team to keep you moving forward.
Bicycling was never something I enjoyed after childhood; I am impressed that you and husband are doing it together. Sounds like fun for you to be healthy and outdoors together. I will share that since I’ve started going to gym (with my husband) that my BP’s have been good also.
I hope your June 6 visit goes well. I know that the talk of transplant must be frightening to hear. The one thing that I experienced during my journey is that time is out of our control. Keep remembering that you are being treated by the Best! You are taking good care of yourself, and I feel certain that whenever the time comes to take the next transplant step, I feel sure that you will be ready. I am praying that your potential donor can donate when the time is right.
Please, no apologies necessary. We welcome you to read silently because we understand that you have yourself and family priorties now.
Hugs,
Rosemary

Liked by IWantToBelieve

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@2011panc

@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

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@lcamino you are sure one busy lady, good for you! I too am trying so hard to do a lot of exercise and you are right, it does take up a good part of the day! The clothing store I frequent most and have in the last year purchased a lot from due to weight loss suggested that I could work there but I don’t think I have time to these days. I guess I would if I was younger and had more energy but I can’t put the exercise of until evening because my husband considers that to be his time. I have lost weight but I think a good deal of that is due to dieting and as I have commented before, I really feel like I owe my dieting success to using myfitnesspal.com. It keeps me accountable. The exercise definitely does help too though and of course it’s good for your overall health. The muscles around my miserable knees have gotten stronger and that has helped considerably with my knee pain.

I too had nausea from one of my pre-transplant medications, lactulose. Some days it was awful. Then I figured out that one thing that made it worse was eating eggs in the morning! That may well be just me, I find that there are so many things that effect one person and not another, which of course makes it more difficult for the doctors.

My blood pressure is teetering on the edge of high these days. Prior to transplant it was always around 115 over something in the 60s and now it is generally around 140 plus or minus but the diastolic is still in the 60s. I had been so smug that my bp was so low but now I have discovered that it typical in people with cirrhosis!
JK

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@2011panc

@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

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@lcamino, I just re-read your post. I don’t do much elliptical but I think I may try to do that more since after doing the treadmill I often get shinsplints. Also, does the “rowing machine” you use look like a regular rowing machine? If so I don’t believe there is one at my club, unless it is not that apparent to someone like me, basically ignorant of gym equipment. If it does not look like the typical rowing machine I would love to see a picture of it to see if we have the same equipment where I go.

I tried to get my physical therapist to come with me to help me with the transition from the equipment at the PT center to the equipment t my club, but he was reluctant to do so. He thought he would have to be sneaky because they would not want a physical therapist taking away from their personal trainers but when I asked them about it they said they would give me a complimentary pass for him! At that point he was beyond joining me though. I guess I may end up having to use a personal trainer but I figure they do not know my needs and limitations like my physical therapist does.
JK

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@2011panc

@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

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@contentandwell Hello, I just read your post about your health club and the need for an experienced person to work with you on exercises at the club. Here is what I did: I talked with the head-honcho trainer at my health club. I explained many of my physical problems and also the types of exercises/machines I had been using with the hospital PT person. I brought a sheet of the exercises/equipment that I had been doing with the PT and asked if they could give me an experienced trainer (not just someone who helps people lose weight or build muscle, etc.) but someone who could look at my exercise sheet and plan a program for me based on what I’ve done in PT. They were very happy to connect me with an experienced trainer who could work with these types of needs. You might give that a try. Teresa

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@2011panc

@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

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@hopeful33250 Thanks Teresa. I may resort to that, or to hiring a different physical therapist. My club is rather large and within it there is a physical therapy that operates, not actually part of the club but uses the club’s facilities. I will have to check on the cost of that. How much did you have to pay for personal trainer? Being in a bedroom community of Manchester our club, compared to city rates, is pretty reasonable ($70 for me with my “senior discount”, but I have no idea what trainers cost.
JK

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@2011panc

@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

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@contentandwell Since I had recently joined the club the first meeting with the trainer was free. I do not know what the usual charge is, I haven’t gotten that far. However, based on other health clubs in the area, the amount that you mention sounds in the ballpark. I hope you are able to meet with someone, it should give you some extra help in designing your program.
Teresa

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@2011panc

@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

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@hopeful33250 Teresa, the amount I mentioned was the monthly membership fee. I believe the personal trainer fees are well over $100. When I first joined I got a package of three sessions for a greatly reduced price but that was probably 8 years ago. I will look into this this week.

I saw in the “Daily Digest” that there were new responses but it was not easy for me find them. Usually the links bring you to them but not this time. Is this a general problem or just me?
JK

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@2011panc

@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

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@contentandwell I looked at my Daily Digest today and the links to the various pages seem to be working OK. When you click on the “View and Reply” does it take you anywhere? Let me know what the problem is and I can report it to the tech team to figure out.
Regarding the fee for trainers, I’ll have to check and see what mine is. The $70 is the same monthly fee as mine, however, because of the type of Medigap policy I have, I get a reduced fee of $40. Teresa

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