I Hate Dialysis Message Board
Introduction => The IHD Family - Our Members => Topic started by: okarol on July 26, 2013, 02:17:52 PM
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Just spoke with Chris. Still in hospital and looks like they can't fix the fistula, too much thrombosis. He's having some other tests tomorrow and may be in the hospital all weekend.
Hang in there Chris!! :cuddle;
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Poor Chris!...
Thinking of you, my friend....
Love....
Darth....
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Healing prayers for Chris. He has had to deal with so many problems. I bet he is missing Whitley. She is the best thing that has happened to him. Feel better,Chris -- thinking of you all the time. :cuddle;
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:grouphug;
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Thinking of you chris and hope you feel better soon. :flower;
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I hope you feel better soon Chris
:flower;
Lots of love, and strength Cas
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Get well soon, Chris. We want to see you in Vegas!
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Chris, hope you're out of there soon.
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wishing you well and for good things to come your way soon.. my :pray; are with you... hope to hear some good news soon :grouphug;
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May I ask if Chris has said exactly why he is in the hospital? Is he going to be OK? Best wishes, Chris!
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this is not good.. and who is looking after poor Whitley?!
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Best wishes to you, Chris!
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Chris, hope you are doing better today.
:cuddle;
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Best wishes ro you, Chris, Prayers for the doctors and nurses to take good care of you. Get well soon.
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Due to Hospital concerns with insurance, confusion between docs, nurses, and lack of communication the hospital told me I was going home, so I arranged to be picked up. I was/ still am unsteady walking and get dizzy, so the nurse did a blood pressure test sitting and standing. There was a difference, but still told I was going home. My ride shows and now the nurse can not get a hold of my doc to get release signature. She called three times and on the third attempt his partner called back. He was going to keep me but the nurse persuaded him to give the ok for me to go home. I wasn't ready, the thearapist didn't think I was ready, but hospital manager sure was over concerns Medicare would not approve payment. So not p.t. for home care or out patient ordered, which will be brought up when I call for follow up.
All this started due to my graft clotting suddenly. It started out by waking up with minimal pain and I shrugged it off and got my day going. As the day was going, it was becoming more prominent. After having my bi weekly labs my mom noticed my arm was swollen, so not knowing who to call I called my local neph while I was in the hospital parking lot hoping to save a trip. Since it was lunch time, figured might as well get a couple things done in the area. Well tired of waiting we went home and then the back and forth call backs between two different nurses at my docs office (I miss my old nurse who knew her stuff) and told to take temp while they wait to hear back from the doctor and to describe the color of my arm. Temp was 99.2 and doctor told me to go to the ER ASAP and to tell them she sent me there. I started feeling worse and pain was even more. Get to the ER doc take one look, orders scans, blood work, and pain killers before scans are done.. Never take pain killers on an empty stomach! I was in sleep mode now and once back from the scan they get an IV going, start antibiotic for infection and then proceeded to give me morphine for who knows why. I ask what they were pushing, but it was to late as they pushed the morphine. Now I feel worse! Not given anything to drink or eat. When I get up to my hospital room and asked how I was feeling, I told them and why. They then asked what flavor of microwave dinner I would like and I'm thinking what happened to the usual cold turkey sandwich, chips, cookie, and juice. After that I was out. The next day they were still looking for a surgeon to get involved, proceeded by disagreements on what to do. My two doctors (pcp & neph) urged surgery to remove the darn thing and I was onboard with that, but surgeon thought otherwise. "Your not using it, why do anything" he said and I'm thinking thank's for calming my fears you a&$hat! I liked having a back upplan, transplants do not last forever you blank blank! And for all that time I was not to get out of bed while treating infection, pain, then stomach issues. Stomach issues requirred a endoscope. On to many meds, so when they asked me if I feel sleepy yet and I said no, not yet clear as day they had to give me more. Well they found the problem, but really didn't need a test for that if they would just listen and let me just eat like I do at home and not 3 meals a day on their schedule. Their schedule made my blood sugars get out of wack and drop every morning to cause problems.
So I get home and Whitley just wagged her tail for a bit and then just laid beside me, later the mae cat sat by my lap, and finally both Whitley and Bailey laid in my room after I petted him. I just didn't want his 89 pounds laying on me due to bone problems, which is another complicated issue that meds are not helping.
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So glad you are home and can have some pet therapy! Sounds like that will do you more good than the hospital, poor guy.
So did they ever do anything to fix your arm?
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Doesn't sound fun, Chris. At least it's over, huh? Were you back at NMH, or was this a local hospital?
IHDers, what is with so many of you ending up in hospital as of late? And cut it out! A person can only take so much worry! :grouphug;
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Well, this story is just too full of weirdness.
I'm glad you're home, though! Like Okarol, I'd like to know whatever happened with your arm.
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What a mess! How does the arm feel? Is it still hurting? Thinking of you. :cuddle;
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Okarol, no nothing was done with my arm.
Cariad, this was at my local hospital, but will p/u labs and doctor notes to take to Northwester.
As far as pet therapy it is hard to take Whitley out without getting dizzy or lightheaded. I was going to call the doctor Wednesday because I thought the office was closed on Tuesday's and I was wrong. I slept the day away after taking Whitley out and she slept by me as I laid on the floor. Was awoken by her when she licked me on my lips followed by Bailey. He actually acted like a normal non hyperactive dog and laid calmly next to me. After he left Patches came in to sit next to me on my bed.
Even sitting at the computer is causing a little lightheadedness.
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Hi Chris! At least you're well enough to post, and that's a relief. I hope you feel better and that the graft issue will resolve by itself.
:cuddle;
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I'm really sorry, but I'm confused. I've reread this whole thread, and what I am understanding is that you went into the hospital because your graft had clotted. As various docs were faffing about, your blood sugar got all out of whack due to all of the meds and tests and general non-adherence to your schedule, and all of this became one big classic cluster****. Is that right? So now you have to be at home to recover from being in the hospital? No surprise there.
I hope you are feeling better soon. :cuddle;
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I'm really sorry, but I'm confused. I've reread this whole thread, and what I am understanding is that you went into the hospital because your graft had clotted. As various docs were faffing about, your blood sugar got all out of whack due to all of the meds and tests and general non-adherence to your schedule, and all of this became one big classic cluster****. Is that right? So now you have to be at home to recover from being in the hospital? No surprise there.
I hope you are feeling better soon. :cuddle;
Pretty much.
I am still getting dizzy and lightheaded around the house and taking Whitley out, so I remembered to email one of my doctors at Northwestern to get the ball rolling. You know your not right when even the hyper dog still is not hyper when he comes upstairs to come see you and just sits there or lays there on the floor next to you. Laying on the floor is so much better for me than laying on a bed right now.
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Well got a message from Northwestern, but did not check my app on the phone for messages till I got on the pc a few minutes ago and they want me to come in Monday in the afternoon with any paperwork I have from the hospital. They will do some test if I can get squeezed in and may admit me. So Whitley maybe staying with me through the night if they do. I hate carrying a heavy backpack in the city.
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I do hope they can sort you out there Chris.
And forget the backpack, take a shopping trolley (the ones you pull behind you)
Good luck for Monday , and enjoy a 'cuddly' weekend.
Lots of love Cas
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Are you eating properly now Chris? Why all this lightheadedness and lying on the floor ???
Hopefully you aren't admitted again, is that the right way to hope? I know Gregory will usually prefer to stay out of hospital but it depends on his state of health.
Big love :cuddle;
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Are you eating properly now Chris?
I guess that's a dumb questions, my apologies. I'm worried about you being so lightheaded all the time though. ???
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Are you eating properly now Chris?
I guess that's a dumb questions, my apologies. I'm worried about you being so lightheaded all the time though. ???
No not dumb, but it is more like am I eating the way I am use to natnnnat.
I am drinking 64 oz bottles of juice along with other fluids, but stopped drinking Ensure products, but still getting dizzy. I attempted to do some house cleaning on one floor only, but had to sit or lay down. Laid down outside with both dogs for a bit to.
Monday is not coming by fast enough.
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Chris, I hope things go well for you to-morrow. Poor thing you sound like you are going through alot. Have you some one who can go with you to hospital?
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Cass, I have to look for one of those shopping trollies online, I was talking to my mom about how they use to sell them in the grocery stores a few days ago because it was mentioned on a facebook page for guide dog users. I do not see them around where I am or taken to now days.
billybags, I prettymuch do everything on my own. My dad will not go, but that is what I like anyway. He doesn't like sitting around. My mom will go to local doctors since she is driving me, but will not go downtown with me, yet complains she hasn't been there in years :urcrazy; ??? , It's not like she has to sit there and wait, there are plenty of things to walk to in the city, but she will not take the bus which would get her to more places. :banghead; This from a person who use to work downtown all the time!
In the end it is better for me and relaxing to be on my own. When I am feeling bad, I just push myself to get there. I have done that many times and have been admitteds after seeing the doc or transplant clinic.
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Went to doc in city for follow up and concerns Monday. Went for labs and back to office for results, collapsed on doc, sent down to ER at 2:30 pm, seen in ER 12 hrs later (long story), transferred to hospital room Tuesday after 7 am, Stress test done and cancelled due to bp, anemic more than usual, some other lab level extremely low and they are looking for initial cause of that. Nonstop hiccups since lunch Wednesday making things worse, CT scan today, stress test to be redone, not going home soon and this is the short short version!
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I'm so sorry to hear you're still not feeling well, Chris. It's really been a tough year for a lot of IHDers. I hope you'll be better again soon.
:cuddle;
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Sorry to hear this, Chris. Rotten news! I hope the situation improves rapidly!!
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More of this falling down / having to lie down business. I hope they can work out what is going on.
My dad will not go, but that is what I like anyway. He doesn't like sitting around.
Reminds me of my father in law! You take him somewhere, as soon as we get there he wants to come home. And he gets annoyed with crowds, all the people in the way. Pretty funny considering he doesn't move that quickly himself. When we go to visit Gregory if he's in hospital, Don always wants to come, but doesn't want to stay, and its a long drive home. I make him bring his crossword puzzle book and a novel. ;)
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I'm sorry to hear that things haven't improved yet. Does anyone have any idea what's going on?
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The docs are taking one problem at a time, but new ones pop up. BP has stayed in 150's all day Thursday and at 1:50 am it was 173 something and dizziness has not subsided. I wonder if bp and dizziness correlate when bp is elevated. My biggest fear right now is with my kidney and constant high bp. Vision is worse off to even higher zoom on iPhone not helping, still blurry.
This is the concerned/ worried I have been since by transplant 13 yrs ago. I feel like I am going to loose the kidney or both kidney and pancreas due to this.
Still gonna try to be a smartass though if I can be in the mood to do so.
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Chris, :grouphug;
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:waving; Hey Chris, Hope you get some answers soon, although it sounds like a challenge. Love ya my friend! :cuddle;
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:grouphug; Chris, try not to succumb to the worry. That doesn't help! :cuddle; I know, I know, easier said than done.
I will be thinking of you and pulling for everything to be sorted out!
:grouphug;
Aleta
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Ok Chris , what are you messing about at, I thought you would be out of the hospital by now. Have they not figgered out what is going on yet. Try not to be negative about your transplant failing. They will get you sorted out. I am thinking about you.
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Morning did not start well. Shift change and me waking up set off medical scare. Severe nausea, dizziness start after new nurse comes to introduce herself. She comes back quick after call light is pressed and has my zofran, then severe chills and shakes begin, doctor called in asap, temp & bp checked, blood cultures ordered, urine sample ordered, IV fluids started. BP 179, temp 98.7 after being 96.3 all day Thursday, so doc suspects infection or med reaction possibly from prednisone. Two hours later a urine sample finally could be collected, bp down to 145, so rest is all I can do. Worn out due to shakes, nausea, and breathing, but have not seen 1 doctor since this began. Feels like they went home for the weekend already and it is already past 4:30 pm!
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Awwww, Chris. Man, you need a break.
:grouphug;
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I was thinking of you today and mentioned you to Gregory, about you were worried for your kidney/pancreas. He says have faith in your kidney, it will pull you through. I say, ANTIBIOTICS
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I was thinking of you today and mentioned you to Gregory, about you were worried for your kidney/pancreas. He says have faith in your kidney, it will pull you through. I say, ANTIBIOTICS
I have had several issues with kidney function due to various health issues in the hospital and within the last year a half issues with pancreas numbers. I do not know how much more they can take, thus my concern.
Another concern they have is me not having a bowel movement, no feeling to need to go, I have eaten at times, but 6 days without anything has added more to their plate of things to check into.
Haven't gotten up yet so I am hoping that I do not have a third day of bizarre morning medical issues to make nurses run for help.
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Be careful Chris. I'll keep checking in for updates.
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From FB I see that Chris is having another bad day. :thumbdown;
This is very worrisome.
Aleta
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A lot has and hasn't happened. More scans ordered and still waiting for MRI. Was told MRI Dept is having problems. Doesn't look like I am getting out this week.
Darn iv fluid push increased
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Hey Chris! Are you in pain or your labs are off? Are you eating? Any luck with a bm? Poor guy, I hate that you're in the hospital for so long!
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I'll be thinking of you Chris, lots of strength, and love, and hugs. Cas
:grouphug;
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Sorry, updating on FB is a lot easier to do than here using a phone. If someone wants to copy and paste is fine.
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I have laptop now. It was brought Saturday along with a visit with Whitley for 3 to 4 hours. ;D I need to get home ASAP so I can get her coat back to normal, she shedded like crazy while on the bed. She is not coming out of her crate much.
Last talk with doc on Saturday was that they want to send me to a ....well a nursing home by my standards to get full body physical therapy to get strength back that a normal physical therapy place can not due. Today he was reviewing my chart about some level that is not common to me and want to dig further back in my charts that this stay may have had an affect with my crohn's. I was surprised he was here this late on a Sunday, but not clear what he was looking into.
I am bored, in need of coffee on a regular basis, more variety of TV programming and movies ( same movies over and over at the same time everyday! Skyfall, Hobbit, Avengers, Sherlock Holmes Shadow something, Dark Shadows, Here Comes The Boom). I need energy the most among a few other things.
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Chris, boredom is a good sign for a hospital patient. It means you're ready for discharge. Do you see the 'nursing home' move as a good idea? Must have been great to have a visit from Whitey. Hang in there, buddy!
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No I do not. I do not fully agree with the notion due to all the bad stories I hear and that I need to get things done at home and bills paid. That said, I do understand the reasoning. I just would rather go to an outpatient center.
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Chris, this nursing home thing, is it just to recouperate?
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Hoping you get recovery and are able to go home as soon as possible Chris.
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If you were to go back home, do you have someone there that can help for a few days? because it will probably be difficult for you to prepare food, walk safely, get to the bathroom safely, etc. because you are weak. If you had someone to help you at home with those areas, then I would recommend getting home health therapy. The therapist will come to you!
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Chris, this nursing home thing, is it just to recouperate?
No, physical therapy for the whole body. So no recouperation there! He said intense pt and I hope that includes the pool!
I would feel better and safer germwise at home.
PT never did come back and haven't been allowed in the hallways, just moving around room.
And for the love of god, they screwed me over on coffee again! Along with wrong cereal and missing fruit.
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Chris, have they given you a timeframe for how long they expect you to be in the nursing home REHAB facility? How about Whitley and some walking therapy?
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Chris, have they given you a timeframe for how long they expect you to be in the nursing home REHAB facility? How about Whitley and some walking therapy?
I do not know at this point. I haven't seen any other doctor, physical therapist, or social worker today. Not even the nurse or tech, but that's ok.
The more I think about a nursing center, the more I do not want to go. Get me back to real food and amounts I want and at what times so I can gain my weight back and I'll work on the strength by pushing myself.
Food delivery here get's pretty high quick depending on what ones taste is and what the minimum amount the order has to be for delivery. DOTS candy won't make it through the night, nor a sleeve of saltine crackers.
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Poor Whitley - sounds like she misses you as much as you miss her :(
sounds like a lot of hard work to get you back in shape... I guess they want to send you to the nursing home(or whatever) to free up the hossie bed and allow you more specialised care with hopefully the right people and equipment you need - and hopefully better coffee.
Hope you wouldn't be stuck there for too long though :(
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Oh my! Are you convinced that this is what you need? Are you feeling pressured to go into such a facility? I want you to get better, but I don't know how best to go about that. I hope the rehab facility will help you, but I can understand your skepticism. Is there some other course that you can negotiate?
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Today nothing has really been done. The morning started off bad with dizziness and lightheadedness, followed by worn out feeling after shower and spine and neck pain. After lunch then severe nausea with bucket nearby, loopy from pain med, but still in pain, and finally took a nap.
The social worker came in to discuss options, what concerns I have, and area I would like to possibly stay. She then went back to look up facilities and to call about having Whitley stay 24/7 for about 3 weeks.
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Do you trust this social worker to work WITH you in having your concerns met?
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Do you trust this social worker to work WITH you in having your concerns met?
Only second time I have met her and today was while pain in spine and dizziness were occurring. I do not have a vibe on her yet.
Forgot to mention not all labs are back yet and more labs were repeated since first done at the begining of August.
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I was going to be released soon when the social worker came down to make plans. She told me I could call my parents to tell them what the plans were as she went back to her office to get something. She called me on my room phone just as I was to push the call button on my phone telling me to stop. Plans changed, more doctors came today from infectious disease. I thought to myself why weren't they called sooner? So now they are going to look to see if it is CMV, c-diff, and a couple other possibilities from blood and other ways :stressed;
I was so hoping to be closer to home or home.
Nurse asked me where Whitley was and I said taking her out would be a problem. Her responce was "Oh yeah, there is that! I wouldn't mind taking her out." Great, but what about the rest of the time? Along with trust issues I would have and not knowing how Whitley would react to sommeone unfamiliar taking her out. I would hate to have her get l oose somehow in Chicago.
Still getting Epogen every other day and something like heparin shots everyday.
Since my dad switched to Direct TV I am able to watch movies on my pc, just not on my iPhone for some reason. Much better than the same movies over and over on hospital TV. I need comedies when I am awake!
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chris, I bet you are right peed off. Are they no closer to finding what the problem is? CMV, c-diff, which one? Would it not be possiable to have care at home, ie nurse, helper. Some one that will come in and do for you.
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So sorry that you situation continues like this Chris. I hope there are answers and healing very soon.
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I have been home for a day or so, I can not keep track of days. Since I did not want to go to a nursing home (I have my own reasons - primarily transplant health), the doctor allowed me to go home to see if I start feeling better. So far I haven't. I go back this week for labs and p.t. and again on a Saturday. Already fell a couple times moving from one room to another while using a cane. I so far sleep, up for a bit and move around, and back to sleep. Hard to stay awake for TV except when I watched a new movie.
Whitley follows me no matter where I go in the house. I was able to comb her, give her heartworm med, flea and tick goop, but petered out to brush her teeth and clean her ears. She has licked me more than usual and lays at my side while I sleep on the floor.
When I came home she was excited, but not jumping excited and neither was our chocolate lab. They both sat on each of my sides being quiet. Even the male cat came up to me while both dogs sat beside me till Whitley got jealous and licked him away. The female cat came up to me much later when all the other animals were in their separate areas.
The doctors still do not know what is going on, but wish my abdomen was not bothering me more than the weakness, tiredness, or pain. Stop the discomfort first, then work on the weakness, followed by tiredness, and last would be pain.
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Well, your transplant health sounds like a very valid reason. Any blood results back? Do you eat a bit now?
Can you still manage to drink your litres?
Thinking of you a lot. Take care Chris,
Lots of love, Cas
:flower;
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Chris, how are you doing?
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Geez, what a nightmare. Sounds close to my recent stay in hospital. Please get well quick.
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Chris, how are you doing?
I went back to the doctors on Saturday and they still do not know what is going on. My liver levels are still elevated, so I have to see a hepatologist and my cortizole level is still low and I have to see an endocrinologist about that to. High doses of prednisone to help with that made me sick and did not help improve the level.
I still have not improved and Saturday's trip to the city wore me out, so Sunday I did not wake till 1:48 pm (way late for meds) and went back to sleep for most of the day and night. Monday is going to be a bad day too, monthly labs and physical therapy followed by more physical therapy on Tuesday.
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Oh, Chris, I wish they would figure this out. It's harder to fight an unknown entity. I'm really concerned that you are needing so much sleep, are you eating your small meals regularly? Wish I could offer some advice that would help... :cuddle;
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Small meals yes, but that becomes difficult at times due to pain and discomfort. Last night it was in my liver area and sitting or laying down was uncomfortable.
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How did your PT go? Have you had lab results back yet?
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How did your PT go? Have you had lab results back yet?
I am sore and more worn out. It is painful to do the exercises and shows how bad I have gotten. My left knee seems to have fared the worst. It is like I had no knee surgery at all with the functionality and pain scale it has.
I will pick lab results Thursday before I go to therapy because I willneed them Friday for a doctors appointment.
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Hope you get better soon Chris.
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How were your labs, Chris?
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How were your labs, Chris?
I do not know, I never looked at them after picking them up. I picked them up after p.t. and fell asleep. Went to a doctors appointment, gave him the results, and he ordered more labs. I will do my monthly labs again next week.
P.T. just wears me out and makes me more sore, liver area is uncoimfortable still.
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Maybe they can fax you a copy of the labs.
Hope you're improving my friend! Miss seeing you posting! :waving;
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Had different labs taken and depending on those results I may have a liver biopsy performed.
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Checked into IHD to see how you are Chris. Not so good I see. :cuddle;
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More hugs: :cuddle; :grouphug; :cuddle;
Hope you are feeling less bleah just now.
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Chris how u doing? Any results?
Thinking of you, love, Cas
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I have had two seperate lab draws for various kinds of test to determine if a liver biopsy should be done and both times the hospital lab has messed up. This time when I get the orders I will go to my local hospital.
A lot of stress around here and I need a vacation!
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Hang tough Chris.
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:rant; Stay strong!!
Love, Cas
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I have had two seperate lab draws for various kinds of test to determine if a liver biopsy should be done and both times the hospital lab has messed up. This time when I get the orders I will go to my local hospital.
A lot of stress around here and I need a vacation!
:banghead; I don't understand how they could screw up TWICE!
Best wishes that you get answers soon. :cuddle;
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I hope all this waiting for answers is over soon. Wish you could come vacation with us in Vegas next weekend. :'( I was looking forward to meeting you.
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Just awful, Chris, I'm sure you feel like this;
:Kit n Stik;
Aleta
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Any news from Chris?
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Any news from Chris ?
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Chris is posting on Facebook and seems to be all right. He is logging in lots of walking with Whitley.
:2thumbsup;
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Thanx for your update
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Chris is posting on Facebook and seems to be all right. He is logging in lots of walking with Whitley.
:2thumbsup;
Thanks for the update, it is very much appreciated.
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I have no updates really. I am still getting lab work with each medication change. Some days my liver feels swollen, but it's not consistent. I haven't had any alcohol since early this year and I would like a beer on my birthday, but I am not going to push my luck. Physical therapy ended last week and I have worked up to walking Whitley to 3.77 miles according to my gps dog walk app. I was in pain halfway through and after I ended. I still get worn out with activity and nap for long periods of time which is the biggest aggravation.
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Hello Chris,
I do hope you feel better soon
and I send you my best wishes and kind regards,
Kristina :waving;
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Chris, you need to ride Whitley. It would make for easier walks for you. :P
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Went to my transplant clinic and I was told there is not much they can do due to all the medical complications I have. So even though they have lowered my liver levels, they do not want to stop any of the medications that maybe causing it. My liver has to be monitored more frequently. I have been switched to a different bone infusion med (side effects suck!), other specialist have to monitor respective levels they deal with, and a different arthritis med maybe used after they figure out what is going on with my ankles.
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Sounds like the 'rock, and the hard place' scenario . But I wish you all the best in general, and a Great Chrismas, and an extra stroke for Whitley!
Lots of love, Cas
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Thanks for the update Chris. This sucks. But when you say that you were told at the transplant clinic 'there's nothing much they can do', you don't mean there's any trouble with your transplant do you? this is still mainly liver?
A gratuitous hug while I'm at it: :cuddle;
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Thanks for the update Chris. This sucks. But when you say that you were told at the transplant clinic 'there's nothing much they can do', you don't mean there's any trouble with your transplant do you? this is still mainly liver?
A gratuitous hug while I'm at it: :cuddle;
The transplant is being monitored more through test and more visits. I now have to see them every 3 months instead of the usual 6months if hospitalized/ 1 year plan.
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Hello Chris,
Thinking of you and wishing you good luck !
Kristina.