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Living with Illness Coping with disease, getting help, dealing with family, staying optimistic, quality of life, hospice care

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  #1  
Old Thu Sep 10, 2009, 10:59 PM
Neil Cuadra Neil Cuadra is offline
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How do you spend your time when you're stuck at home or in the hospital?

When you're used to an active lifestyle, e.g., working, playing, going to school, traveling, etc., and you're suddenly confined to bed, stuck at home, or having an extended stay in a hospital, how do you make the adjustment? What do you do with your time? How do you keep from going crazy?

We weren't all mountain climbers or Olympic athletes before we got sick or became full-time caretakers, but even simple activities like going to movies and sporting events, shopping, visiting family and neighbors, etc. may be gone from our routines.

When you're first diagnosed, there's too much going on to worry about this. But later there may be long periods of time before, during, and after treatment when you can't be out in the world as you once were.

I would like to know from forum members how you have dealt with this.
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  #2  
Old Fri Sep 11, 2009, 06:58 AM
Birgitta-A Birgitta-A is offline
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Stuck at home or in hospital

Hi Neil,
I have not been very ill for long periods - when I have been in hospital I read a lot and when I am at home I spend more time as usual at my pc.

Since I am so afraid of infections I dare not travel or go to cinema, theater etc. I try to meet my relatives and friends outdoor - my doctors thinks I have too much restrictions but I prefer to live like this and I have not had any infections the last 2 years (knock on wood).

The situation must be very different for younger members that have to adjust their lifestyle from very active to passive perhaps for long periods of time.
Kind regards
Birgitta-A
70 yo
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  #3  
Old Fri Sep 11, 2009, 12:07 PM
Gloria J Gloria J is offline
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Focus on something else...

Hi Neil,

I try NOT to be stuck at home, I do travel (we cruise a lot!) and go out when I'm feeling well. When I'm out and about, I'm very careful about not touching any door handles, or any surfaces that other people might touch. I wash my hands constantly when on the road, and I'm very careful in public bathrooms. If my ANC is low, only cooked foods for me.

The longest I was in the hospital was 17 days during ATG treatment, and most of that was in isolation because I was positive for two flu strains. My salvation was the combination TV/PC in my room. I watched more news shows than I can count, read many books, and kept in touch with family and friends via email and telephone. The contact was tremendously supportive, everyone kept asking when I was going to get Call Waiting on my phone! But I always tried to focus the conversations on what else was going on, besides my health problems.

I was always used to long, brisk walks outside; now, the treadmill is my friend. The trick is to start out slowly, and keep increasing your time and level of exercise. I've been able to work up to an impressive routine on it, and the best thing is - I can always cut it short if I start to get tired. That's something I could not do when I found myself a mile or two from home, and with no energy left.

When I'm not feeling well, I think reading is the best diversion. It forces you to focus on something besides your latest (low) counts, and doctor's dire words, and miserable symptoms, and gives you a few hours away from your own life, and into the lives of other people. It's also best done while eating chocolate.
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Gloria, early 50s, dx SAA Summer 2007, Pred July 07, Rituxan Aug 07, dx PNH Feb 2008, ATG Apr 08, began Soliris 5/31/11
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  #4  
Old Fri Sep 11, 2009, 07:44 PM
JEZ JEZ is offline
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I think this is a very important question. Part of a human being's sense of value and meaning comes from how he or she is engaged in activities that are meaningful. I found that my energy level and cognition were so severely compromised in the early days of recovery after ATG and prednisone that I could not do many of the things I used to do. Even very simple things like walking to the corner were very hard... I used to have to rest 4 times in one block. It was a dark and depressing time. I think if I ever go through that again I will try to develop interest in more sedentary activities or a hobby to keep me engaged in something besides the state of my bone marrow. At the time, it was all new and pretty distressing not to know what was next for me. I laugh now, but I remember telling my husband I wish the nurses would let me do some filing or something useful! Fortunately I am much better and able to work and do some exercise now. At the time it was very hard tho and seemed that it would be that way forever....
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JEZ, 50s, diagnosed AA Dec 2006, ATG one time, serum sickness resolved / took cyclosporine (Neoral) with delayed response but now with good labs/ recent kidney toxicity, so off of cyclosporine now and trying generic Imuran
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  #5  
Old Wed Sep 16, 2009, 01:35 AM
Jen B Jen B is offline
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Any advice from parents on how they kept their kids positive, active and engaged through transplant would be very helpful...
thanks!
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Mother of Ethan, diagnosed with SAA at age 3-1/2 Dec. 2008; Treated with ATG(h) Dec 2008 and ongoing Cyclosporine. MUD BMT 11/10/2009, 10/10 match
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  #6  
Old Thu Oct 1, 2009, 01:38 PM
squirrellypoo squirrellypoo is offline
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Quote:
Originally Posted by Jen B View Post
Any advice from parents on how they kept their kids positive, active and engaged through transplant would be very helpful...
thanks!
When I was in hospital when I was 5, my parents rigged up a little "trap" from a berry box and some feathers and googly eyes and attached it to the window blind (and made up some long elaborate story, now long forgotten), and every morning when I woke up, it had snared a little present for me! Most of them were activities to keep me occupied for the day, like coloring books, sing-a-long type cassette tapes, little craft kits, legos, etc, and my parents enlisted the help of friends and family to get enough to fill all the days.

It was really good to have something to look forward to each day, and the memories were so good from last time that I had friends and family do the same for me this time around and wrap up "boredom busters" for my transplant even though I'm 30 now!

You should also probably check with the hospital about what will be available in the room/ward where he'll be - will he be allowed in the children's play area/toy room, or will he be confined to just his room? Does the room have a tv/dvd player or radio?
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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  #7  
Old Thu Oct 1, 2009, 06:05 PM
Neil Cuadra Neil Cuadra is offline
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Some treatment centers have videogame systems that kids can "check out" and keep in their rooms.

Even healthy kids who are at home and not confined to a hospital room can spend all day in a room playing videogames, if you don't send them outside now and then for some fresh air and exercise, so that's clearly an entertaining way for some kids to pass the hours. They may not be able to play with other children in a hospital, but with multiplayer online games there's a possibility that they could play a videogame with other kids their age over the Internet. I wonder if any treatment centers are set up for this.

On the flipside, kids should keep doing schoolwork to the extent possible, and that will take some of their time.
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  #8  
Old Fri Feb 25, 2011, 11:43 PM
flowerlady flowerlady is offline
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Living with Illness

Hi everyone~!
I am usually either at my computer traveling, Skyping, reading or on my sewing machine trying to pull together some uncomplicated project for the girls. I also am great at making lists. Lists of things I plan to do once the GVHD from transplant subsides. Seeing I am rather on the weak side immunity wise (due to meds) and physically, I lost quite a bit of weight, I spend a lot of time at home avoiding infection! The treadmill is a great idea and it may be time to bring it up out of the basement. LOL Thank you for this site I hope I still have a home here as it has been quite a ride and you are still the best!

Count your blessings and believe!
Heather
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Flowerlady, 49, Diagnosed MDS 5q- 06/07, Revlimid 07/07 - 11/08. Vidaza 12/08 - 3/09. Allogeneic Stem Cell Transplant 4/14/09.
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  #9  
Old Sun Feb 27, 2011, 03:39 PM
mausmish mausmish is offline
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I like to keep my brain active. During the early part of my recovery, my attention span was insufficient to do anything more than passively watch TV. But now I read, watch movies, play board and video games, and do lots of word games, logic games, and number games on my iPad. I also do some work on my computer. I don't go out much since I'm still less than day +100 and it is the height of flu season.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #10  
Old Fri Mar 4, 2011, 09:39 PM
mscrzy1 mscrzy1 is offline
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Scrabble!! I played it all the time! I also watched tv, and was able to sneak into the hearts of some of the nurses enough that they allowed me to borrow the Nintendo from the pediatrics unit.
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Angie

36 yr. old, dx SAA in Jan 1996, treated with ATG in Mar. 1996, off cyclosporine Sept. 1996, last blood transfusion in Aug. 1997, slow decline in counts again November 2010, AA and current count decline thought to be caused by lupus, currently taking 400mg Plaquinil
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  #11  
Old Mon Jun 20, 2011, 05:37 PM
TheCursedOne TheCursedOne is offline
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A good topic to start - I absoultely agree that PNH or AA is a DOOMHAMMER disease for as long as you have it - you are just really ill for as long as you have it.

I have had PNH for six and a half years (I am 17 currently) and a feel like an absoulute wreck, even with soliris and cyclo etc... I tried to continue being active after I was diagonsed with PNH but soon I had terrible symptoms and heart pains and I was forced to stop. I cannot be like other people because I cannot breathe in the morning without getting a THUMPING pulse in my head... After a blood transfusion I may feel ok for a week but then it starts again.

Tbh better to get cancer than this - at least you will either live well or die...

Forget it - dont bother to be normal because you just cant... everytime I tried to be around people they just picked on me for my jaundice and inability to do things like others.

I have no match so BMT is out of the question - My only hope lies in the PNH sponateously recovering - as it can happen in 10% of cases.

Just pray you get well and you be able to make your own blood again - something others take for granted.
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  #12  
Old Tue Jun 21, 2011, 03:22 PM
Karenish Karenish is offline
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living with illness

As an occupational therapist I concur with a previous poster regarding doing activities which are meaningful to you.
Whilst in isolation i took up knitting squares to make into blankets, sewing, reading, colouring in, watching funny movies to make me laugh.
Now, I am in my 3rd month after ATG and waiting for counts to improve, my consultant has said i can return to work as they are now above critical, (i work with ex soldiers with ptsd & depression, so low risk for infection). I go out to the shops but not on saturdays, I go out the restaurants but during the week when it is quiet, I love going for little walks, helps with the stiffness i get with the cyclosporin! and just love sitting in the garden watching the birds....I even managed to mow the lawn the other day. Not yet transfusion independent, but hoping this will come within the next few months. For me chatting to other human beings does me a world of good, my diagnosis is treatable, its not terminal....something which I am reminded of by folk in the chemo unit...at least with AA we are not told we only have so long to live....its an unknown....a bit like life really - and at least we are under the care of our consultants, the man in the street could cross the road tomorrow and get run over and killed.....we on the other hand are likely to take much more care with our lives and that has to be a positive thing xxx
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  #13  
Old Thu Jun 23, 2011, 08:33 PM
BerryP BerryP is offline
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Smile Things to do in hospital/ resting

We all have low days and nothing comes much lower than being in hospital especially when its for ATG and they are just watching you! I remember it well. I would say do what you can when you can, sure in the beginning you will find your brain is scrambled eggs and your bones are lead, but gradually you will have good days. Enjoy them as if they are the best champagne, find somethings that make you laugh and remember that if this is all there is it had better be b^^^^^y good! The hardest thing for me is telling others about my disease, now I have decided to lie as the pitying looks make me sad. I tell them I have got vampires disease and do they have any juicy veins. They soon change the subject! I think the folks here on this website will always be pleased to hear from you. I was a gymnastics coach and worked full time and chased after my teenage daughter. Its often best not to look back at what you've lost but to look forward. Good days are just around the corner
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  #14  
Old Fri Jun 24, 2011, 01:17 PM
Snuuze Snuuze is offline
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Its often best not to look back at what you've lost but to look forward. Good days are just around the corner[/quote]

Thank you, thank you for that reminder! Grieving the losses does nothing to help recovery.
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Sue, age 72; Dx 6/2010 MDS Int-2. Revlimid unsuccessful, began Aranesp 10/2010; additionally Dx PNH 2/2011, Soliris added 3/2011. ATG 5/2011, Cyclosporine 5/2011. Nplate 10/2011 to 10/2012 . Exjade began 12/2013 due to high ferritin level, discontinued 3/2014 because of increase in creatinine.
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  #15  
Old Fri Jun 24, 2011, 06:13 PM
rondeb111 rondeb111 is offline
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Having same problem

Neil,

We are asking ourselves the same question. My poor dad has been in and out of the hospital just about every week. The good news is his blasts went from 28 to 12 after two treatments of a trial drug. Bad news is he is back in the hospital again after being released on Wednesday of this week. He has an infection some where they just don't know where.

He finds it difficult to even get out bid right now but longs to mow the grass. We try to visit as much as we can when he is in the hospital but he usually doesn't feel like visitors and it's an hours drive one way?

I am reading all the posts for encouragement and maybe some new ideas to bring a little bit of life back for him.
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Debbie, Daughter of Russell age 65, diagnosed MDS RAEB 2 January 2011. Initial blast 18%. No response to Decitabine, blasts up to 28% - Leukemia, Started revlimid & vidaza, 6/11- blasts down to 17%, 7/11had to stop all treatments due to infections. (1994 - C cell lymphoma, 2006 - Prostate cancer)
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  #16  
Old Mon Jun 27, 2011, 04:17 PM
BerryP BerryP is offline
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things to do in hospital

if you have a window binoculars are good, if only because others will come into your room to see what you are looking at! I also found really short books great because you did not have time to lose the thread. If you are on steroids contemplating the next meal or biscuit run is always good. Go for a short walk if possible and find the hospital hot chocolate machine. Spook the nurses by sleeping or napping in the day and being awake all night. Night staff seem somehow more hip and able to tolerate small rebellions. One thing I would say, don't concentrate on being ill. For a while I monitored when I was given drugs and what they were, it sent me round the bend so I stopped it. Remember the medics are your very best friends, they are the guys who will fight this battle when you are too bl***y weak.
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  #17  
Old Sun Jul 3, 2011, 10:29 PM
triumphe64 triumphe64 is offline
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Quote:
Originally Posted by BerryP View Post
i Remember the medics are your very best friends, they are the guys who will fight this battle when you are too bl***y weak.
Tomorrow is Independence Day here in America. That is probably why I was having so much trouble figuring out what "bl***y" meant. But then again, most of us on this board have trouble with "bl***".
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Dallas, Texas - Age 75 - Pure Red Cell Aplasia since March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #18  
Old Sun Jul 3, 2011, 11:45 PM
mausmish mausmish is offline
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lol - good one!
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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