sorry for the copy and paste. I wanted to share over here too and I am just to tired to type out another post…
Well I am finally back home after almost a three week hospital stay. I had to be put on TPN, IV nutrition. I am also NPO, no food or drink. I can get away with some fluids, but I couldn’t imagine eating. I am running weird fevers all the time and my belly is in some insane pain. Thanks for Fentanyl patches the pain isn’t all that bad. I came home yesterday evening to meet a nurse that showed me how to hook up to my TPN myself. It goes into my new PIK line in my neck. It is pumped into me through a battery powered pump. The bag is air tight so I don’t have to worry about air bubbles. I put the two liter bag of TPN and the pump in a back pack and I am supossed to be mobile with it. I am not very mobile with being that I am so weak. I can at least get to the potty and stuff. I am on it for 12 hours a day seven days a week. Right now I am on my last three hours on my home Hemo machine. Once I am off it I will be hooking back up to the TPN. We are trying to get the times right to work with our schedule. This is all caused by Schelrosing Encapsulating Peritonitis that I got from being on CAPD for too long. It looks like I reached the need for surgery stage with it. I need to build some of my strength up before I go under the blade. I just wanted to post an update on my health. I could write so much more, but I am pretty tired at this point.
Peace;
LSB
[quote=Leafsunbear;13370]sorry for the copy and paste. I wanted to share over here too and I am just to tired to type out another post…
Well I am finally back home after almost a three week hospital stay. I had to be put on TPN, IV nutrition. I am also NPO, no food or drink. I can get away with some fluids, but I couldn’t imagine eating. I am running weird fevers all the time and my belly is in some insane pain. Thanks for Fentanyl patches the pain isn’t all that bad. I came home yesterday evening to meet a nurse that showed me how to hook up to my TPN myself. It goes into my new PIK line in my neck. It is pumped into me through a battery powered pump. The bag is air tight so I don’t have to worry about air bubbles. I put the two liter bag of TPN and the pump in a back pack and I am supossed to be mobile with it. I am not very mobile with being that I am so weak. I can at least get to the potty and stuff. I am on it for 12 hours a day seven days a week. Right now I am on my last three hours on my home Hemo machine. Once I am off it I will be hooking back up to the TPN. We are trying to get the times right to work with our schedule. This is all caused by Schelrosing Encapsulating Peritonitis that I got from being on CAPD for too long. It looks like I reached the need for surgery stage with it. I need to build some of my strength up before I go under the blade. I just wanted to post an update on my health. I could write so much more, but I am pretty tired at this point.
Peace;
LSB[/quote]
Its been sometime, been concerned and I did find out about your status on your blog. Seems this year has caught some of us quite hard. In January I was admitted to the hospital and also was placed on TPN for two weeks, then after that I was sent to surgery. It was very hard and was considered lucky to get through the whole process. While in hospital my labs went all wrong, very slow recovery and not giving up.
I am glad your home now and hope your get back to health and feeling stronger again, just don’t give up and keep trying. I think you should rest as much as you can and take it slow, keep that stress down a bit.
I am really sorry to hear that you’ve had such a rough time. I can only imagine how weak you must be. Being in the hospital and being malnourished causes muscles to get very weak. In fact, just being on dialysis is a risk factor for becoming deconditioned physically. Research has shown that people on dialysis can build up their strength, flexibility, and endurance with exercise. You might want to talk with your doctor about gradually starting to do some light exercises. You could tell him about the Life Options booklet on exercise that starts out very gradually with simple exercises that you do a few times. Over time as you feel stronger, with your doctor’s approval, you can do more repetitions or do more difficult exercises. Here’s a link to Exercise: A Guide for People on Dialysis:
[quote=Beth Witten MSW ACSW;13376]I am really sorry to hear that you’ve had such a rough time. I can only imagine how weak you must be. Being in the hospital and being malnourished causes muscles to get very weak. In fact, just being on dialysis is a risk factor for becoming deconditioned physically. Research has shown that people on dialysis can build up their strength, flexibility, and endurance with exercise. You might want to talk with your doctor about gradually starting to do some light exercises. You could tell him about the Life Options booklet on exercise that starts out very gradually with simple exercises that you do a few times. Over time as you feel stronger, with your doctor’s approval, you can do more repetitions or do more difficult exercises. Here’s a link to Exercise: A Guide for People on Dialysis: http://www.lifeoptions.org/catalog/pdfs/booklets/exercise.pdf[/quote]
While in hospital the only suggested exercise was to try to get up and start walking after 2 days from major surgery. Within one week I was expected to walk at least twice a day through the the hospital halls. On the day of my release to go home I walked from 2nd floor of the hospital to the front lobby on first floor. The whole process is quite painful and without pain killers its even dreadful, ugh…
LSB sorry to hear you have been having such a tough time . Hope you are on the mend. Am sending you a big Aussie Get well hug from over the other side of the world down under.
Cheers
[QUOTE=Leafsunbear;13370]sorry for the copy and paste. I wanted to share over here too and I am just to tired to type out another post…
Well I am finally back home after almost a three week hospital stay. I had to be put on TPN, IV nutrition. I am also NPO, no food or drink. I can get away with some fluids, but I couldn’t imagine eating. I am running weird fevers all the time and my belly is in some insane pain. Thanks for Fentanyl patches the pain isn’t all that bad. I came home yesterday evening to meet a nurse that showed me how to hook up to my TPN myself. It goes into my new PIK line in my neck. It is pumped into me through a battery powered pump. The bag is air tight so I don’t have to worry about air bubbles. I put the two liter bag of TPN and the pump in a back pack and I am supossed to be mobile with it. I am not very mobile with being that I am so weak. I can at least get to the potty and stuff. I am on it for 12 hours a day seven days a week. Right now I am on my last three hours on my home Hemo machine. Once I am off it I will be hooking back up to the TPN. We are trying to get the times right to work with our schedule. This is all caused by Schelrosing Encapsulating Peritonitis that I got from being on CAPD for too long. It looks like I reached the need for surgery stage with it. I need to build some of my strength up before I go under the blade. I just wanted to post an update on my health. I could write so much more, but I am pretty tired at this point.
Peace;
LSB[/QUOTE]
Dear LeafSunBear
Wow. Sorry to hear about all your medical problems. We in the confused town of Berkeley send you a big Berkeley hippy love hug. Let me know if there is anything I can do for you.
Berkeley Bard, your bezerkeley hippy love hug need not travel far. I live two blocks from the north berkeley bart station;)
The one good thing is the people that I have around me love me greatly and are being very supportive. I have truly been blessed in this life. I am not sure what would be worse being alone or going through what I am now. I have lived in small mountain towns alone where my only human contact for weeks would be with the clerks at the grocery store. That was pretty rough I would say. I am just keeping my head up as much as I can. Thank you everyone here for sending your support.
LSB