Since Transplant, some issues..

[stauffenberg]

I just noticed my routine transplant follow-up results today and found that my latest hemoglobin value was 114 (= 11.4 on the other scale).  That's worse than it used to be when I was on dialysis, and a lot lower than it was last measured before I developed renal failure, when it was measured in a routine physical at 163!  Since no nephrologist even bothered bringing this very low Hb value to my attention, this goes to show how suspicious the patient has to be when told "the bloodwork is okay."

[Jaybird]

I got addicted to energy drinks since my transplant.. I KNOW its not the best idea. But I don't drink soda's or any other caffiene drink. and I drink one early in the day and no more. I researched about them, and the worst thing in them is the Caffiene, but its not much stronger than a few cups of coffee. Also my BP is still good at about 110/70. The pro's of feeling active throughout the day, outweighs the cons.. not ALL the cons, but life is fickle anyway.

I don't drink energy drinks that have anything in it that a Multi vitamin deosnt have, except taurine and glutamine. BTW, energy drinks are HORRIBLE for you if you are on dialysis because the machines do NOT filter out taurine. Its not bad for your kidney and its easy to filter out, but dialysis wont do it.. Just an FYI.

[mtaylorbrown]

Angela

     I never met an Angie I didn't like.

     The vitamin D idea with sunlight is good, but make sure it is vitamin D3. I would also recommend a B-complex supplement, but I don't know what a neph would say about that. Mine knows I take one and hasn't said anything about it. I'm pre-dialysis so I know it is different, but I used to be tired all the time with all the BP meds and toxins. Now I'm back to just having a hard time getting up and then about 2pm I have trouble even if I have a light non-carb lunch. My complex includes all the Bs, including niacin. Don't take niacin by itself, you'll feel terrible and turn red all over. (chances are, that is).

     Stay clear of heavy carb b-fasts, it will either pick you up or put you in nap-mode. It sounds like it might tire you out first think in the morning.

     Watch a happy movie/show, if you are tired and watch a dramatic or reality show, I believe it just brings your tempo down.

     Do breathing exercises, this works for me. The idea is to get the oxygen into your blood system.

     Make sure you have a sleep pattern, this is the most important concept. That nap may sound like a good idea, but you may be disrupting your sleep pattern.

     I know it sounds corny, but cheer up. Do it on purpose. Laugh and smile as much as possible.

     Do all the exercise you are allowed.

Warmest regards,
Matthew

[Romona]

Hi Angela, I am throwing a bizarre one out here for you. I kept complaining about being tired a year ago, weight gain ect. My nephrologist sent me to a lung center for sleep studies. His theory was sleep apnea. Look at the bottom of your tongue in a mirror and see if you have bite marks on it. That can be a sign that you are having sleep disturbances. I had a sleep study and it was fine. They did a nap study and found I could fall asleep in a few minutes. They told me I have narcolepsy and cataplexy. Most people think of narcolepsy like you see it in movies people just falling asleep anytime. It is more like if given the chance you can fall asleep quick and not hit the proper stages of sleep. If you don't go through the stages, you will still be tired. I read somewhere that a study was done that might link narcolepsy to immune function. That makes sense to me since our immune systems are suppressed.

[angela515]

I just noticed my routine transplant follow-up results today and found that my latest hemoglobin value was 114 (= 11.4 on the other scale).  That's worse than it used to be when I was on dialysis, and a lot lower than it was last measured before I developed renal failure, when it was measured in a routine physical at 163!  Since no nephrologist even bothered bringing this very low Hb value to my attention, this goes to show how suspicious the patient has to be when told "the bloodwork is okay."

I always get copies.

[pelagia]

Anywho.. I am determined to change things in my life, starting with what I eat. I haven't done it yet... but I am starting to write it down and making myself a promise letter to make subtle changes I can stick too before I add new things. I also plan on doing this for activity. Like, maybe riding my mom's bike around the park and back for a few weeks until I can go furher... that's less pressure on my ankles I think. Eh, idk.. we will see if these few things to start with help.

Angela, I think you have a great plan!  I have learned that small changes can lead to big results if you give it time.  I managed to give up butter, half and half, soda (for the most part), processed foods, fast food and a number of other bad eating habits over a decade ago by making a list of goals, tacking it up in the pantry (where company wouldn't see it), and doing it in small steps over a couple of years.  I am trying the same thing with exercise over the last year as my general activity level otherwise seems to be declining (too much desk job).  It's incredible how much better I feel all day if I ride the stationary bike for 30 min. in the morning.  I find it really difficult to make big changes, but pretty easy to make small ones.  And while it seems counterintuitive, the less I do, the more tired I am, so I try to keep moving.  If you write things down you can look back months or years later and really see what you accomplished. 

[monrein]

I too think your plan is great Angela.  One little thing at a time and it really adds up to a big change as all the little steps get to be your new habits.  Good luck with the plan and keep us updated.

[Chris]

Hi Angela, I am throwing a bizarre one out here for you. I kept complaining about being tired a year ago, weight gain ect. My nephrologist sent me to a lung center for sleep studies. His theory was sleep apnea. Look at the bottom of your tongue in a mirror and see if you have bite marks on it. That can be a sign that you are having sleep disturbances. I had a sleep study and it was fine. They did a nap study and found I could fall asleep in a few minutes. They told me I have narcolepsy and cataplexy. Most people think of narcolepsy like you see it in movies people just falling asleep anytime. It is more like if given the chance you can fall asleep quick and not hit the proper stages of sleep. If you don't go through the stages, you will still be tired. I read somewhere that a study was done that might link narcolepsy to immune function. That makes sense to me since our immune systems are suppressed.

I was scheduled for a sleep study last year but cancelled it because of getting a ride home from the city was a problem. The orders where for the transplant hospital only and they didn't want me to have it done locally. Wouldn't have fallen asleep anyways, to much like a hospital stay and I know people are watching! I know I can fall asleep anywhere, been doing that since junior high. It helps me tune out noisey little bratty kids.

So what did they do to treat you Romona?

[Romona]

They gave me Provigal (I don't know if I spelled it right). I got to take one dose before transplant clinic said "No". It is supposed to be very safe. It is given to pilots in the armed forces. So after almost two weeks of transplant and the other doctors hashing it out , they agreed to Ritalin. It has helped. The people at sleep clinic felt if I was more alert during the day, I would sleep better at night. It has worked. I have been having vivid colorful dreams. Bright colors. My Prograf level is twice what it is normally. It still is in safe limits. UPMC aims for a low trough. It is normally 4-5 and right now it is running 8.

[angela515]

I took Adderall XR 30mg for the last month, and I never once got tired or had or even felt like I had to take a nap at all during those 30 days. Once I have a ride, I am making an appt to get another prescription... you can't get refills, so you have to get a new prescription every 30 days. My son takes it for his ADHD.

[Romona]

That is how it is with my ritalin. They will mail a script or I can pick it up. They can't call it in.

[stauffenberg]

You might also want to consider taking the over-the-counter drug, sulbutiamine, which is just a form of vitamin B1 which is able to cross the blood-brain barrier.  Just by increasing the brain stores of thiamine, this substance has been found to increase alertness, mental energy, and physical energy.  I have been taking it for a while and find that while it does not help reduce the total number of hours of sleep I need per day, it helps me become fully awake faster after getting up and keeps me more energetic throughout the day, even with a fairly serious level of intractable anemia.  It does not interfere with anti-rejection drugs, since your body naturally contains vitamin B1 in any case.

[annabanana]

Angela, have you considered getting involved at the school your kids go to? Maybe part time...as bus monitor to and from school...and I'm sure they could find all kinds of things for you to do at the school. In my experience, schools LOVE volunteer workers. (And you could use it on your resume.)

[ODAT]

[Anywho.. I am determined to change things in my life, starting with what I eat. I haven't done it yet... but I am starting to write it down and making myself a promise letter to make subtle changes I can stick too before I add new things. I also plan on doing this for activity. Like, maybe riding my mom's bike around the park and back for a few weeks until I can go furher... that's less pressure on my ankles I think. Eh, idk.. we will see if these few things to start with help.

Hi Angela, since I don't have a lot of experience with most things on this site, I try to focus on what I can add to. I'm sure you've looked into exercises that you can do that are not hard on your ankles. When I had foot surgery, I wanted to find an exercise that I could do without my feet. I found Windsor Pilates. Very easy to do. My problem is being consistent.

I was just talking to a co-worker who completed a marathon last week. We both agreed that even though you are tired if you push yourself to do an exercise you do feel better and gain more energy 'expend energy to gain energy.'

My mom gets aranesp shots every two weeks, plus B12 and sometimes iron transfusions. She is type 2 diabetic and predialysis. She is still tired all the time and takes two naps most days. She cannot do exercise or even walk very far due to her knee. She also got a mask for sleep apnea (which she doesn't use anymore argh). Even when she used the mask she would only get 5 hours sleep with it, then take it off and sleep another couple hours.

I've read lots of your posts and you sound like an amazing person who loves and does tons for her kids. I have a pretty boring life and depend on my kids to keep me busy. lol Read my post about surviving the Warped Tour. Do your kids do sports yet? I loved doing town baseball. Out three times a week meeting some good parents -while the others thought their kids were stars and I was not good enough to talk to. Funny, those parents were around when he was 7 and most defintely now that he is 16. One mother said to me 'I spent $1,000 on baseball this winter!' We were at a practice and when her son was pitching she yelled 'slow down.' All the other parents were letting the coaches do their job.

Sorry, I get talking and chat away. I hope you feel better and more energized soon. take care

[angela515]

Thanks everyone!

stauff- Is that the name of it on the box? I would have to write that down, 

anna: I live too far from school to volunteer or I would. I have no way to get there, no ride, no vehicle of my own. That is the root of my being stuck at home. I missed the deadline of signing the kids up for T-Ball this year cause I was in the hospital that month, otherwise we do that during the summer if they don't go to their dads. I do take them to the park across the street everyday, weather permitting, an interact with activited at home throughout the day. Plus my 3 1/2 yr old nephew lives with us now for a few months so he keeps me busy too. Still tired out, but no chance to nap

ODAT: Thanks for the advice I plan on starting to do my AB Lounge for 5-10 minutes everyday, or every other day. I also plan on walking on the treadmill at whatever speed is comfortable for my ankles and whatever length I can do, I will start off short times and increase when I feel I can. Maybe some arm workouts with my 5lb dumbbells I have. At least that stuff will be better than what I am doing, right? I definately know diet can also dictate how you feel, and I can admit I eat HORRIBLY since transplant because I felt freedom to finally eat what I want again, so I did, and got addicted to it. I need to change to fruits and veggies and healthy portions of starches and good protiens. Saying it is much easier than doing it though.. but I am going to work on it once I get back from vacation. I know if I start it now then while I am at my brothers this week I won't stick to it and then I feel like a failure and give up, so I will start next week when I return, with just small changes first and a few at a time instead of all at once.

Anywho, I thank you all for the great advice! 

[Zach]

I plan on starting to do my AB Lounge for 5-10 minutes everyday, or every other day. I also plan on walking on the treadmill at whatever speed is comfortable for my ankles and whatever length I can do, I will start off short times and increase when I feel I can. Maybe some arm workouts with my 5lb dumbbells I have. At least that stuff will be better than what I am doing, right? I definately know diet can also dictate how you feel, and I can admit I eat HORRIBLY since transplant because I felt freedom to finally eat what I want again, so I did, and got addicted to it. I need to change to fruits and veggies and healthy portions of starches and good protiens. Saying it is much easier than doing it though.. but I am going to work on it once I get back from vacation. I know if I start it now then while I am at my brothers this week I won't stick to it and then I feel like a failure and give up, so I will start next week when I return, with just small changes first and a few at a time instead of all at once.

I'm sure you'll be successful.  You did it before (November 2006) and you can do it again.
 

[Jill D.]

Angela, you certainly are in a frustrating situation. As far as diet goes, what you say is so true about what you eat affects how you feel and your energy level. About 6 weeks ago I got really serious about only putting good stuff in my body - actually took eating and food choices to a different level than I ever have in the past. I have been loading up on fruits and veggies (I know you love your salad!), eating good protein and try to eat as close to whole foods as possible. I really look at labels and choose foods that have 5 or less ingredients, or have ingredients that contain words I can pronounce! Whole grains only, some lowfat dairy, good protein (chicken, fish, almonds, beans) round out what I eat, but mostly I eat fruit and veggies. I don't eat any processed food and have limited caffeine to almost nothing. I drink green tea (hot and cold - comes in many flavors) and sprinkle some ground flaxseed on my food every day. Even as I type this, I can't believe that I am sounding like such a health nut! I didn't do this all at once, but each week have tried to be more aware of what I eat. After the first week that I really focused on fruits and veggies I could not believe how great I felt. I truly do not crave much of the food I used to eat (especially processed food) because I physically do not feel well afterwards. I have also reduced the amount of sodium and sugar in my diet just by the food choices I make which is like a bonus!
My point to this is not only do I feel better but I have so much more energy. I have been exercising every day, I feel less stressed, my headaches have disappeared and I have lost some pounds and toned up. Since so much of your situation seems hopeless, maybe some small steps by trying the best you can to eat healthier will help you feel better. Just keep telling yourself that there are so many foods that you are allowed to eat now that are so good for you - load up on beans, yogurt, potatoes, tomatoes, nuts - they're all good!
Have a great vacation and like you said, when you get back just start making small changes - we're here for you Angela!

[KT0930]

I took Adderall XR 30mg for the last month, and I never once got tired or had or even felt like I had to take a nap at all during those 30 days. Once I have a ride, I am making an appt to get another prescription... you can't get refills, so you have to get a new prescription every 30 days. My son takes it for his ADHD.

My son is on Concerta in the mornings and a small dose of Ritalin in the afternoons, and his doc writes three months of prescriptions at a time. He simply writes at the bottom of each one, "do not fill until xx/xx/08". That way we can't get them filled all at once, and he's covered for the FDA..would your doc do that so that you don't have to try and get down there every single month?

I just read through the whole topic, and you already sound a bit more upbeat than you did in the first posting. It sounds like you're trying to make small, manageable changes, and that's the trick to making it stick over time. Like others have said, getting away from the TV can help a lot. What about cooking dinner for your family each night? While I was on dialysis and didn't have much energy, I found that spending time in the kitchen and really enjoying the process of preparing the meal helped my energy levels a lot. Planning the menus got boring, but I got my husband's help with that! 

[MyRenalRomance]

Angela, 
I hope things get better for you. Its great you are aware of your issues and are looking into measures to help yourself.  You sound like a strong and positive gal!  Hang in there! 

I am post transplant (5 weeks) and struggling with very low energy levels.  I actually felt better 2 days ago,  drove my younger daughter to the T-Mobile store to repalace her broken cell phone, and to the pharmacy to p/u some rx refills. Did not nap during the day (for once!), however, felt soooo tired the next day (yesterday), I slept the entire day!  Most days I am so tired, I cannot do much of anything except nap and the bare necessities.  Like you, I do not feel depressed . . . just tired! I had thought I might be drpressed b/c I  had thought after 1 month post transplant I would feel like brand new (and that sure isn't the case for me!)! I've recently been informed that it may take me between 3-6 months to fully recover. 

I have realized a direct correlation between my diet and how I feel.  Pre-transplant, I ate extremely healthy (whole grains, LOTS of fruits and veggies, etc).  I noticed that post transplant, I was so tired, I was eating the bare minimum, and not necessarily all the healthy stuff I used to eat.  I am trying to change that, and THINK that will help me.

I don't go out often, yet, as I feel too weak to drive - and most days feel too tired to go out,  except to go in for blood work and clinic visits.  Its great that you do get out to the movies! I wanted to do that this weekend, but was too tired (and I'm dying to see the new X-Files movie!).  Me, not see the X-Files movie on opening weekend?  That's TIRED!!!

Another finding I've realized is that I do feel beter after visiting w/ friends.  My friends drop by to say *hello* and I do feel the positive energy they bring w/ them is extremely beneficial to me (as long as they don't stay too long - then, I'm pooped afterwards!).  My mom drops by every day to help out w/ housework, hubby is supportive, and I do have 2 teens (so no lack of family company around), however, it sure isn't the same as having girlfriends/cousins drop by for a visit!

Thanks for listening.  I read your post about being tired, and could totally relate.  I apologize for going on about me, when this is YOUR thread.  But, just wanted you to know I can relate to what you are saying.

You have a lot on your plate - it seems understandable that you are tired.  I hope your situation/energy level improves.  It seems like you have been through a lot, and have been strong through it ALL. I know you'll get through this!!!

Hope you have a wonderful vacation!

 

[angela515]

It's great not to be the only one post-transplant tired. I thought I was a freak since my first transplant was like, wham-bam-energy is yours now and this time I didn't, lol. Your advice and experiences are all insightful and helpful. Thanks!

[Nan]

Oh thank you ....thank you!  That is WHY message boards are so good for you!  I too, am frustrated,  I am going on six months since my transplant....and I am soooooooooooo tired , all the time! I can not even believe the things I "turn down" to do, because I am so tired!  and...I have transportation, so I just don't know.  I truly thought by now, I would be feeling pretty darn normal, I avoid naps during the day,  lay away more than half the night.  I do agree about the food thing, food still tastes like cardboard to me, and I can take it or leave it, I am NOT eating very healthy at all.
Gardening has always been a love of mine, my grandchildren and I have worked on a new section of my garden....it is the "Elf" garden, and all the plants are miniatures, and we have a elf house and the children have made stepping stones our of shells.........it takes my mind away from frustration.
I will keep you in my thoughts and prayers........I will send them SOUTH..........I am above you in Minneapolis!  Sending you my best Nan

[st789]

Wish you will accomplish the goals.

[MyRenalRomance]

Oh thank you ....thank you!  That is WHY message boards are so good for you!  I too, am frustrated,  I am going on six months since my transplant....and I am soooooooooooo tired , all the time! I can not even believe the things I "turn down" to do, because I am so tired!  and...I have transportation, so I just don't know.  I truly thought by now, I would be feeling pretty darn normal, I avoid naps during the day,  lay away more than half the night.  I do agree about the food thing, food still tastes like cardboard to me, and I can take it or leave it, I am NOT eating very healthy at all.
Gardening has always been a love of mine, my grandchildren and I have worked on a new section of my garden....it is the "Elf" garden, and all the plants are miniatures, and we have a elf house and the children have made stepping stones our of shells.........it takes my mind away from frustration.
I will keep you in my thoughts and prayers........I will send them SOUTH..........I am above you in Minneapolis!  Sending you my best Nan

My health insurance Case Manager informed me that it was "completely normal" to not feel "up to par" up to 6 months (and possibly longer) post-transplant.  Sending you positive thoughts and best wishes, Nan! 

[MyRenalRomance]

Angela,
Are you back from your vacation, yet?  Hope it was/or still is a GREAT one!
Thinking of you, and wishing you all the best!
Charlene aka MRR   

[pelagia]

It can be so difficult to deal with feeling tired all the time.  I've been there many times despite having no major health issues.  By doing the "experiment" over and over again I have found that if I am not eating well and not getting exercise I will become more and more tired and more and more sedentary.  It's a vicious spiral for me.  And then unfortunately, I am one of those folks who starts gaining weight.  My blood sugar starts to creep up too.  I assume that it is "metabolic syndrome" or something like that, because as soon as I cut out the processed foods, sugar, etc.  I start feeling better.  I find that as I get older (now 53) it's even more difficult to maintain my weight, but even more important.  I know that those of you on dialysis and those with transplants face many more challenges to stay healthy.  Sometime I don't know how you do it.  It has certainly inspired me to be much less of a wimp.