Since Transplant, some issues..

[angela515]

For some reason... since my transplant, my blood levels are perfect, so I should not be tired one bit.. but I am.

I am wondering if it's because since the last 18 month's after transplant I have had to be house bound only going anywhere on Saturday morning, Walmart, and occasionally going to a movie on Friday night. Otherwise having to sit at home doing nothing while kids are in school, or doing some school work of my own, or watching TV, or doing laundry, or reading... nothing exciting... nothing physically or mentally stimulating on a steady basis...like work.. which I so badly want to do, and soon will *need* to do for my own sanity or I fear what I may do (no, not die, lol.. I mean like just up and moving out on my own even though I cannot financially afford to do so, so I wouldn't make it a month, or getting back with my ex, which would be the stupidest thing I could ever do in my life.. and so on)... the insanity of just being house bound is mentally killing me and physically damaging my body as I am losing stamina, energy... everything.

Some days I get up, having to force myself to do so no matter how much sleep I get, and I drag myself along and do what I need to do for my children, and if it weren't for it being summer, I would do what I do everyday they are in school... go right back to bed when they get on the bus and I sleep literally until they are 10 minutes from the house. This is of course making my stamina and energy levels even more low, instead of raising them... and in turn making me even more weak and tired and so when exercise comes to my mind, I am way too tired to do it.. and when I try I have to quit after a few minutes even on the easiest thing because my body is so out of shape. So then of course anything I eat is going to stay on me and so I am gaining weight.. gaining inches... having to buy bigger clothes. Then in turn it gets depressing... and my mind is already bad off from being so upset from having to stay home and not being allowed to work. I feel trapped... no way out... I just want to escape.. but I can't... I see no choices. I cry alot just thinking about it, because I am going to be 30 in Nov.. with 2 kids... and STILL LIVING WITH MY PARENTS because I have no way out, and dialysis and a fiance that couldn't keep a job I was forced to move back in with my parents after being on my own since 18.. only to live back at my parents while on dialysis and recovering from my 1st transplant and hen right back out on my own...this time is different though.. and I can't see no way out.. NONE... ZIP... NADA.

How do I deal with this? Am I just supposed to accept being stuck at my parents FOREVER??? I can't.. I just can't... I am too independent, and it's killing me to stay here...

I had to get that off my chest. I felt like I was going to explode with nobody to explode at. Thanks for listening.

[Chris]

How much sunlight are you getting? Studies have shown that people who do not get enough exposure to sunlight tend to be tired ad not motivated. Then they were given ultraviolet light (Ithink that is the one) to sit in front of for so many minutes at a time per day and they improved.

As for living with the parents, I can totally understand. I lived on my own since I was 17 and then had to move back at 28 due to being laid off and major health problems starting. I need to finish school and get a job or play and win the big lotto to get my sanity out of here.

They say exercise helps, but I hate going to a gym or doing exercises that don't get me anywhere. So I bike ride. You probably need something to stimulate your mind pretty good and have a change of pace each day. Something that would need you to wake up in the morning and getting going.
Or have they checked your iron?

[Sluff]

Lack of sunlight also causes Vitamin D depletion and that could cause joint and bone pain. I know that my vitamin D is real low and I even work outside so you can go to Walmart for $4.00 and get a years worth of vitamin D. I hope that helps.

[angela515]

I take Vit D already due to my AVN, and my iron levels are normal.

I try to go outside everyday, like going to the park to see what my kids are up to, and taking my dog for a walk, but to stay out for a long time in the heat, and sunlight alone, can make my Lupus come out of remission and other problems... so it's kind of like, go out, but not too much.

Is there a way to test to see if it's lack of sunlight? It would suck if it was that since I can't be in it alot... except I make a point to tan, 

[monrein]

Angela, could you be suffering from a low-grade, underlying depression??  I think many ESRD patients, even post=transplant ones, do and the symptoms can be very much exactly what you describe.  Ask your medical team what they think.

Wanting you to feel better.

[angela515]

I'm in no way depressed, even though I described my situation as "depressing".  I am very happy, however, I am VERY frustrated with not being able to work.

I don't even mind staying at my parents, but I would not mind it more if I was working to save up and get my own place for me and my kids.

That is my main problem behind being so tired... I *WANT* to work with every being in my body, I just have no way to do that at this time. So with not being able to, comes being suck in a house, and can't go anywhere. Imagine being stuck in your house and you only go anywhere every Saturday morning to shop at Walmart, and then you only go anywhere else once in a great while.... and you have no medical issue keeping you from doing so, so you want to get out and live life.... it's frustrating beyond words. It's like I am being forced to not live my life... I know my kids are my life, and I am greatful for spending all my time with them, but I need adult time, alone time... LIVING NORMALLY time, like WORKING... having my own place again... getting to PARENT my own children 100% instead of having freakin' parents in my ears all the time saying do it this way., you should do that, you need to do this... blah blah blah... it's all overwhelming and to do it alone with no significant other, sucks too.

[Chris]

The study I read about not having enough sunlight was a couple years ago. If I remember right, it was done in Alaska. I am not even sure which doctor you would want to ask this about either.

[angela515]

Alright, ty Chris.

[willieandwinnie]

Oh angela, I'm so sorry you are feeling this way.  Len has been having some of the same issues with being housebound. You don't sound depressed, really bored would fit it better. I hope you can soon find some balance in you life. Please let us know how you are doing. 

[pelagia]

Hope things start looking up for you Angela.

[Chris]

I don't think this affects you angela,

From Ohio State University
How does sunlight affect humans?
It is accepted that bright light can affect sleeping patterns, have an impact on the internal biological clock, and that the relative light during summer and winter can affect human energy levels. Exactly how this is so is a focus of study throughout the United States, Canada, and Great Britain. It is known that exposure to daylight helps the human body process food better and encourages the production of vitamin D3 which is important for efficient use of calcium and phosphorus in the body. Sunlight also activates an enzyme in the skin which produces a polymer of dopa (an amino acid) called melanin.

Melanin is the pigmentation in the skin that both produces the darkness and protects the skin from damage by sunlight. Initial exposure of skin to sunlight generates a rapid production of small quantities of melanin. Subsequent exposures produce slower generation of larger quantities of melanin (melanogenisis) which is the effect of tanning or darkening of the skin.

Sunlight also has an effect on the body through the eyes by stimulating the pineal gland to release a neurotransmitter called serotonin which helps regulate blood vessel constriction and a hormone called melatonin. An excess of melatonin in the body induces sleep, drowsiness, and lethargy. One hypothesis is that the dimmed natural light of winter signals the body to increase the production of melatonin. For most of us who already spend most of the time indoors, the increase of this chemical is intensified and, in some people, can create a psychological reaction. Furthermore, unlike subsistence farming or fishing societies, most people maintain their work, school, and social lives at a more consistent pace throughout the year, rather than reducing activity in the winter.

[paris]

Angela, is the lack of a vehicle the biggest problem?  It is hard to be stuck in a house, feeling trapped.  It is also hard being an adult in your parent's home.  My oldest daughter had to move home with her two little ones for a year.  We tried to give her space, but I know it was not good for her at times.  As a parent, it is difficult for us not to "mother" our grandchildren. I am getting much better at stepping back.  I figure I messed my kids up, now it is their turn to mess theirs up!!     I do feel bad and wish there was a simple answer for your problem.   And I agree with willieandwinnie, you don't sound depressed, you sound bored. You are someone who wants to work and be active. 

[skyedogrocks]

Even though you say you aren't depressed, it does sound like it.  Depression can do so many things to your body, making you hurt, lack of energy, always wanting to sleep, etc.  Have you talked to your doctor about this? 

I'm also confused as to why you are unable to work?  Is it due to lack of energy or lack of transportation?  I think working would help immensely.  Maybe trying something part time, a few days a week.  Just something to get you going again.  If working is something you truly can't do, how about volunteering your time?  You definitely need to get out and interact with people.

Good luck! 

[angela515]

My transportation situation was widely known on here which is why I didn't explain it, I forgot we get so many new people, and not everyone knows, or even the one's who know may forget.

I do not have a vehicle, I totalled it in 2004, and my DL was suspended. I have to pay down a ticket of $1700 from that accident, and it's hard to even make a payment on it at all with living on SSDI and having other bills that come first and children who definitely come first. I live 30 miles from Des Moines, so I basically live in a small little town with not alot of people and the only job being the gas station which denied me employment due to my credit report. (I most likely wouldn't have taken the job anyways, b/c I am sure it pays less than I get on SSDI and taking a job that offers less than I get for just sitting here is stupid.)

So, no bus system for me to ride a bus 30 miles to the city... no car, my parents work and my father is NOT at all going to let me work graveyard and drive me. We have this argument weekly if not more often, and his reasons are #1 Gas prices... #2 He isn't going to have him or my mother get less sleep to drive 30 miles to take me to work and go to bed later, and have to wake up even earlier than they already have too to drive 30 miles to get me and return... it's alot of miles, time, and money to that. Also, when it isn't summer I have to be here to get my kids up and ready for school and on the bus since my mom leaves for work everyday before 5am, and my dad before 6am... So, their reasons aren't hatred or mean... they are just the lousy facts. 

As for depression, I am not depressed. My life is fantastic and wonderful besides being stuck at home and bored to death with no energy from doing nothing all day and just wanting to work. I love work so much, it gives me pride and joy... but yeah, I am DEFINITELY very frustrated with the situation of being stuck here in this house... but depressed about it, no. Being on dialysis for 2 1/2 years and then getting a transplant but being stuck in the house, I basically just went from 2 1/2 years NO energy or stamina and being stuck at home.. to the same situation but not due to medical reasons, due to transportation ones. Point being, I don't think being without energy/stamina for 2 1/2 years and then getting a second chance (third for me..) at life but spending all the energy I did/do have on being a single mother, I had no energy left to push myself to exercise, and now over time this last 18 month's it has built up and really left me drained... physically, not emotionally. On top of it all, it is VERY hard for me to exercise, seeing how it kills me sometimes to just stand, let alone walk. My ankles are fused and the joints left are deteriorating due to AVN... so exercise is VERY painful and so I don't rarely do it... b/c I am just trying to make it day by day walking because I won't being doing that many more years either.

Anywho, That is my transportation prob, and why I cannot work right now. I go to school online and graduate in 3-4 months with a degree in Medical Billing and Coding... and am going to go to school to be a RN when I have a vehicle. So, I have spent my time wisely sitting here... it just sucks after 18 months of it.

I have no idea if I conveyed my thoughts to words in a understandable fashion of what I was trying to say... I hope I did though.

Thanks for that info Chris!!

[Adam_W]

Even though I don't have a transplant, I can still relate to the "not really having anything to do" issues. I've been on home dialysis over a year, and since I do my dialysis on my own time, I have lots of free time. I don't use much of it though. I still don't work (usually too tired to do so), and I just don't have anything to do. I still live with my parents as well, and that is producing even more stress. Like you, Angela, I am not the least bit depressed, I'm just bored I guess. I'm frustrated over my latest round of dialysis issues, and the fact that I'm 26 and living with my parents, but all in all, I'm still pretty happy. I just wish I could break out of this round of boredom and get out and enjoy life a little bit more.

Adam

[angela515]

Adam, you took the words out of mouth!

"I just wish I could break out of this round of boredom and get out and enjoy life a little bit more."

[okarol]

I think Jenna's situation is similar in that she still sleeps a lot (although she stays up really late, so I don't know how many hours a day she actually sleeps.) She was working 2 days a week but just got laid off today (after 7 months.)

I am just guessing, but it seems harder for young people who have been dealing with chronic illness during the years when they would be formulating their aspirations, than it would be for the average young adult. Instead of developing vision and goals, they have to focus on their health, and getting by, while not feeling so great.

Maybe it would help to see a life coach or someone that helps a person with their expressed interests, goals, and objectives. Life coaching is a practice with the aim of helping clients determine and achieve personal goals. Coaching is not counseling, therapy or consulting. I don't know anyone who has done this, so it will be interesting to learn more about it. But I think Jenna might benefit from coaching, if she's willing.

[pelagia]

Angela - have you ever tried gardening?  Many of the IHD community are avid gardeners.  It doesn't involve much of an investment and you can reap big rewards.

Karol - could you try brainstorming with Jenna about some small goals?  Maybe that would get her started in the right direction.  I'm a big advocate of tacking them up on a piece of paper someplace so that you can look them over later down the road.  I do the same thing at work with my bigger goals, because otherwise I get lost in the day to day stuff.  A life coach sounds good but pricey.

[twirl]

thirty years may seem old to you but you are still young
you are taking care of your children and that is not an easy job
could you go back part time when school starts
what jobs do you do?
didn't you like to go outside and tan
do more of that
I wish I had better ideas for you
you are a good mom and in my opinion that says volumes about a person
am so proud of you bowling skills

[willieandwinnie]

twirl, you are so right.

Hey Angela, have you every cross stitched? I have some complete kits (material, floss, needle and instructions) I'd be happy to send you. Let me know.

[pelagia]

Angela, I also agree with Twirl.  And the other thing that occurred to me this morning is that you are a good writer.  Have you ever considered writing?  You could start a blog about your experiences.  just my 

[paris]

Angela, you are dealing with so many physical difficulties.  Lupus limits being outside, all the pain with AVN and top all that with a transplant.   And you little ones into all of that, and I am exhausted just thinking about it!  The medical billling and coding is a great job choice.  Decent money and can be done from home.  I know that doesn't help with being out with other people.   I truly don't think we can offer any ideas that you haven't already thought of.  You really have your act together.  Did going to the transplant games help or did it make you feel more isolated?    Not the same, but AlohaBeth is on top of a mountain in Yosemite with no vehicle and 2 hours from the smallest town.   She is going slightly crazy, even with work.  It is hard to be "stuck".      I think you are doing a great job with what life has thrown at you.  You are a strong woman

[stauffenberg]

The first rule in medical diagnosis is: When you hear hoofbeats, look for horses, not zebras.  So here we have a patient who is exhausted post-transplant, and everyone is theorizing that the cause must be lack of sunlight or depression or lack of exercise?  Those are zebras, since they don't have any special connection with the patient, and instead we want to look for horses, which are things that do have to do directly with the patient's medical history.

I have read of some transplant recipients who have spent as much as a year 'recovering' from the transplant, though I was able to return to full-time employment two weeks after my transplant and everyone's experience is different. 

Since the overwhelmingly most common cause of post-transplant tiredness is low hemoglobin, I would suspect that first.  Even though in theory the new kidney should normalize the hemoglobin levels, in fact many do not, usually because of the trauma the graft undergoes in the transplant process.  The patient says her bloodwork is normal, but she should make sure that that is not just the breezy remark of some careless physician who prefers to regard a hemoglobin of 110 as normal enough, even though it is not.  If you find that your hemoglobin in anything less that 120 (12 on the other scale used), insist on getting a prescription for long-term acting EPO, such as Aranesp, and you might feel a world of difference.

[pelagia]

Angela, I'm sorry that I missed the part about the sun way back in the very beginning of this thread.  Can you go outside very early or in the evening when it cools off?  My husband has taken to walking after dark, which is okay because we live in the country and our road is a "dead end.".  That way he doesn't even have to think about his sun exposure, just the    I sure hope you start feeling better soon. 

[angela515]

The first rule in medical diagnosis is: When you hear hoofbeats, look for horses, not zebras.  So here we have a patient who is exhausted post-transplant, and everyone is theorizing that the cause must be lack of sunlight or depression or lack of exercise?  Those are zebras, since they don't have any special connection with the patient, and instead we want to look for horses, which are things that do have to do directly with the patient's medical history.

Nice analogy!

I have read of some transplant recipients who have spent as much as a year 'recovering' from the transplant, though I was able to return to full-time employment two weeks after my transplant and everyone's experience is different. 

My first transplant I was out the door 4 days after transplant and went out to look for a job and got one weeks later. So, for that transplant I too healed fast. I was young and hadn't had kids yet either, nor did I have new problems like I had this time.

Since the overwhelmingly most common cause of post-transplant tiredness is low hemoglobin, I would suspect that first.  Even though in theory the new kidney should normalize the hemoglobin levels, in fact many do not, usually because of the trauma the graft undergoes in the transplant process.  The patient says her bloodwork is normal, but she should make sure that that is not just the breezy remark of some careless physician who prefers to regard a hemoglobin of 110 as normal enough, even though it is not.  If you find that your hemoglobin in anything less that 120 (12 on the other scale used), insist on getting a prescription for long-term acting EPO, such as Aranesp, and you might feel a world of difference.

That is what I thought it was too, but everytime my labs show very good. *shrug* I personally think sitting and watching TV most of the day doesn't help and even without having a medical problem could make a person's stamina and energy low. I wish I lived in Vegas still b/c we had a pool in out backyard and thats great exercise that wouldn't hurt my ankles.

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.