Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 Hi Kim, My son who just turned 20 has a lot of problem's with dehydration and we are not sure why. We have a nurse come in once a month to start an IV for 3 days which I change the bags. I am not sure if it is mito related but he looks like a new person after he also has severe Cyclic Vomiting Syndrome which seems to be under control as long as he receives hydration and he has severe Postural Orthostatic Taycardia Syndrome also known as POTS and/ Dysautonomia. I hope that Dave is feeling better I will keep him in my thoughts and prayers. Hugs, Donna K ---- kj24012 doyoucook@...> wrote: > we spent 6 hours in hospital for dehydration and Dave seems to be > losing weight and confusion has increased. also I noticed he speaks > softer now and I have trouble hearing him. are these some of the > effects of Mito? > Kim > > > > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 Hi Kim, sorry about Dave. I have issues with hydration, some of which have been the result of poor swallowing. I have since been given a feeding tube so I can better hydrate and insure consistent nutritional needs are met. The real question is why is Dave getting dehydrated ? Does he have an infection, kidney, liver or pancreatic issues, poor intake etc... Could his weight loss be solely from dehydration, or is he having poor intake of food, chronic diarhea or poor absorption ? Is he getting dehyrated from vomiting or diarhea ? It's important to work through the questions with his doc and try to find out what happend. Best of luck ! bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2005 Report Share Posted August 27, 2005 > Good questions to ask. Dave does have a feeding tube and does have swollowing problems and does have bowel problems. dehydration is a new issue for us. he did have plenty of liquids but it just didn't help him.this seems to be a new stage for us to deal with. he is also losing his memory and getting confused more lately. sometimes I just get so tired of this sicking disease. kim > > Date: 2005/08/26 Fri PM 10:15:26 EDT > To: > Subject: Re: dave's health > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2005 Report Share Posted August 27, 2005 Kim, the memory / concentration problems can be from dehydration and also fatigue. Depression can also cause cognitive difficulties. It's important to get any bowel problems under control. Otherwise, chronic diarrhea can lead to electrolyte imbalances and dehydration, both of which are dangerous. Conversely, constipation can create toxic conditions in the bowel and may also cause obstruction and / or perforation of the bowel. These are some of my issues too, so I'm quite familiar with them. I use laxatives and even enimas when necessary for constipation, and imodium for diarrhea. For days when I need better hydration, I have Propel ( like Gatorade with much less sugar ) and it helps to replace the electrolytes. Water isn't enough on a day when you're particularly dehydrated. I also noticed when I changed formulas that I had to start taking in more fluids since the new formula is more concentrated than the last one I used. bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2005 Report Share Posted August 27, 2005 Hi just an idea or two, my gastro doctor has recommended that I take one to six Colace or generic brand daily depending on how my IBS is doing that particular day and this seems to be working with me and hopefully it will continue that way. Just an idea but with gastro problems, who knows as it all depends on how things are going that day. When I was at my cousin's in Washington State over the holidays I didn't have enough stool softeners with me and she had me try some of the Liquid Fleet she has used when they were testing for her colon cancer a year ago and one teaspoon in a small amount of juice worked fine. Dolores venomvw pamcroy@...> wrote:Kim, the memory / concentration problems can be from dehydration and also fatigue. Depression can also cause cognitive difficulties. It's important to get any bowel problems under control. Otherwise, chronic diarrhea can lead to electrolyte imbalances and dehydration, both of which are dangerous. Conversely, constipation can create toxic conditions in the bowel and may also cause obstruction and / or perforation of the bowel. These are some of my issues too, so I'm quite familiar with them. I use laxatives and even enimas when necessary for constipation, and imodium for diarrhea. For days when I need better hydration, I have Propel ( like Gatorade with much less sugar ) and it helps to replace the electrolytes. Water isn't enough on a day when you're particularly dehydrated. I also noticed when I changed formulas that I had to start taking in more fluids since the new formula is more concentrated than the last one I used. bug Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2005 Report Share Posted August 27, 2005 My husband (Gos Rest His Soul) used to tell me that of all the people he talked to I was the only person he couldn't hear well and when I was still able to work I would get so embarrased when a Provider that I was talking to on the phone would ask me what I said but I muddled thru so it could be one of the symptoms?? Dolores kj24012 doyoucook@...> wrote:we spent 6 hours in hospital for dehydration and Dave seems to be losing weight and confusion has increased. also I noticed he speaks softer now and I have trouble hearing him. are these some of the effects of Mito? Kim Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2005 Report Share Posted August 27, 2005 Acid reflux and thyroid problems can also cause you to lose your voice. bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2005 Report Share Posted August 27, 2005 Hi Kim, Sorry to hear that Dave isn't doing well. Even though Dave has a feeding tube, he may still need additional hydration, you might want to ask his doctor about hooking him up to an IV for extra fluids. I have noticed that this summer has really played hardball on my body, I was always dehydrated and couldn't take in enough fluids orally. Also bowel problems, confusion, and memory loss can all be related to his dehydration. I have a severe case of gastric emptying delay and I am always constipated. I started TPN over a month ago and it started to get better, or so I thought it was, but I am back in the same boat I was before starting the TPN. I am not suggesting that he start TPN, just explaining my situation. My Mito doc started me on TPN so that I can gain some weight and get stronger so my body can handle the J tube surgery it needs. Hope Dave improves soon.... Hugs, Ann-Marie At 07:46 PM 8/27/2005, you wrote: > > Good questions to ask. Dave does have a feeding tube and does have > swollowing problems and does have bowel problems. dehydration is a new > issue for us. he did have plenty of liquids but it just didn't help > him.this seems to be a new stage for us to deal with. he is also losing > his memory and getting confused more lately. sometimes I just get so > tired of this sicking disease. >kim > > > > > > Date: 2005/08/26 Fri PM 10:15:26 EDT > > To: > > Subject: Re: dave's health > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2005 Report Share Posted August 27, 2005 Kim I am sorry about Dave's health, I will keep you in my prayers As for the voice getting softer I just had a speech therapist out to the house to evaluate Duane and his voice is getting very high pitched and soft also I asked why, The answer is Dave is dehydrated his energy goes kaput and it takes energy to get the voice to make noise when there is no energy you cant make the vocal cords move so they move in the high region of the cords and that is what makes it sound soft and you cant hear that. Duane gets high pitched and very breathy that is how I explain it it is worse at night better in the morning, once I thought about it. It made since more energy in the morning less at night I am sure I could have explained this better but I have been up since 5:00 am and I am pooped. hugs Jan dave's health > we spent 6 hours in hospital for dehydration and Dave seems to be > losing weight and confusion has increased. also I noticed he speaks > softer now and I have trouble hearing him. are these some of the > effects of Mito? > Kim > > > > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2006 Report Share Posted January 21, 2006 Hi Kim, I'm so sorry you are having to go through this. I know what a hard decision this is. I lost 2 grandmothers this past year and both were in Hospice. My grandma who I grew up with and was very close to had congestive heart failure for years but continued to hang on. She went from a senior apartment to my mom's house because she could no longer live safely by herself. That worked for awhile because her medical care was limited and she could still take care of herself. Then things began to progress and we brought hospice to the house for the medical care my mom couldn't do. It was extremely difficult for my mom and she was physically and mentally exhausted. It became obvious that something had to be done. My parents live in a rural area also and it would take at least 15 minutes for rescue to get in. The decided to put my grandma in a hospice home. It was wonderful. They are usually very small with only a few patients and things are done differently than with a nursing home. My grandma wore pretty gowns instead of hospital gowns. She was clean and well fed. If she was in pain she was treated immediately. My family could visit anytime and even have dinners or parties in a special room there. Her Medicare and supplemental insurance covered everything. My grandma was there about 6 months and was very happy and comfortable to the end. My mom was able to get the away time for her well being and wasn't responsible for care she couldn't handle. We know we made the right decision. She felt extremely guilty at the beginning letting such a beloved family member go into a " home " . It turned out to be the best thing. My other grandma only had hospice care at home because her cancer spread very quickly so a decision was never needed in that case. I realize that my cases are very different than yours. You and Dave are young and this isn't suppose to happen. Dave is your husband. I just wanted to tell you that in our case, placing my grandmother turned out to be the best solution. Mom tried being superwoman and it didn't work. Although it was a very difficult decision to make it was the most realistic one and the correct one. I'm glad that you are taking time for yourself with school and your therapist. That is very important. Don't beat yourself up about this. It isn't your fault. You didn't ask for this. Do what you feel is best for you and Dave. Gentle hugs............your former roomie, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2006 Report Share Posted January 21, 2006 Kim, It's good to hear from you and thank you for the update. I'm sorry that things are not getting better. You have been a wonderful support for Dave and you are still doing that, but I understand what you are feeling. I suspect that Dave is receiving good care and being monitored for his medical needs on a daily basis now that Hospice is involved. Hospice care is an excellent to a point. Now you seem to be faced with another decision. The doctor is recommending a placement where Dave can get more mental stimulation and you can get more rest. At the same time, there will be people to care for him 24/7 - that means shifts. No one can hold up 24/7 on their own as the human body is not meant to go without proper rest. When we are forced to do this, it's impossible not to feel some resentment. I have had to make a similar decision 3 times in my life mand although I felt terrible when I was doing it, once done, I knew it was the best for everyone, including the patient. Hugs! I know this is difficult and I am sure that you will make the right decision after considering everything involved. My thoughts and prayers are with you. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2006 Report Share Posted January 21, 2006 > thanks for your warm thoughts. It has been so stressful but thank God my sister in law (Dave's sister) has been my comfort. her girlfriend died last year of breast cancer and she went through Hospice. she said everything I'm experiencing is the same thing she went through. I do have a great support system but not many understand the Mito aspect of it. Kim > From: JSchwartzo@... > Date: 2006/01/21 Sat AM 11:24:26 EST > To: > Subject: Re: Dave's health > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 Kim, I am so sorry that things are so difficult. I don't have any personal experience with Hospice, but I wanted you to know that I am thinking of you and Dave. Hugs, doyoucook@... wrote: >Hi everyone, >It's been a while since I have posted. Dave went on Hospice in December, and things are not't looking good. >He mostly sits in a recliner during the day and sleeps at night. The doctor feels I should place Dave so he can get more mental stimulation and she can see that I'm worn out in care giving. I started college for my social science degree. I'm trying to prepare myself for life without Dave. my courses are done from home so I can be with Dave. I' ve been seeing a therapist to help me deal with this loss, she calls it anticipatory grief. my head says on thing my heart says another. I feel like I'll be betraying Dave by placing him but I know I can't continue on doing this daily by myself. Has anyone else been through this? > >Kim >P.S. Hi a Koch > > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > >Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 Kim, I am so sorry to hear that you are having to deal with all of this. I know you are doing all you can for Dave, but you also have to take care of yourself. I could see the love in your eyes when you talked about him and can see your love for him in your e-mails. I can't imagine what you are going through right now. I just want to let you know you are in my thoughts and prayers always. Hugs, a On Sat, 21 Jan 2006 10:09:05 -0500 doyoucook@...> writes: Hi everyone, It's been a while since I have posted. Dave went on Hospice in December, and things are not't looking good. He mostly sits in a recliner during the day and sleeps at night. The doctor feels I should place Dave so he can get more mental stimulation and she can see that I'm worn out in care giving. I started college for my social science degree. I'm trying to prepare myself for life without Dave. my courses are done from home so I can be with Dave. I' ve been seeing a therapist to help me deal with this loss, she calls it anticipatory grief. my head says on thing my heart says another. I feel like I'll be betraying Dave by placing him but I know I can't continue on doing this daily by myself. Has anyone else been through this? Kim P.S. Hi a Koch Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.