I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: Mizar on December 03, 2010, 04:22:04 PM
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That's what I feel like I am doing Today, having a " Poor Me " Day and I Hate it, when, I do that and try not to let it happen too often. I am not the One, with the Health Issue here and I try to stay Focused, on that fact. The last Two Days, have just Stunk. My Husband is on Couminldin and they just can't get the Dosage right. I have to drive Him to D and to the Dr's for PT/INR tests on His Blood. His Neph, won't do the Tests, so We have to go, to His Primary Dr. for this. He had His Blood tested on Monday at the Drs. Office, They called us Tuesday Morning and said, it was High and they no longer wanted to handle it. They wanted Him to start going to a Coumindin, Clinic at the Hospital. I took Him to the Clinic on Wed. Morn. They called later and said, His PT/INR was at 6.8 and it must be checked again the next Day. So We get up at Six, for Dialysis, Yesterday and His Nose is Bleeding. Bad Bleeding. I couldn't take Him to D, so We went to the ER. This took Four Hours and they gave Him a Shot of Vitamin K. As soon as We got out of there, it was off to D. The Shot did nothing. His Nose Bleed, until Three A.M. this Morning, 22 Hours Straight. I asked Him Twice, if He wanted to go back to the ER. but He refused. We were supposed to go back to the Clinic Today, but I called and asked if I could bring Him in on Monday, instead. He is Exhausted. He uses Oxygen. He has to use a Wheelchair. The Woman at the Clinic said, to Me " If He does not come Today, He will no longer be in the Clinic " I lost it. I started Crying. I never do that. I told Her, " I will get Him, in, Somehow "
Five Minutes, after I hung up from Her, His Primary Dr. called and said, " We worked very Hard, to get Him, into the Clinic and if YOU, don't get Him, to every Appt. He could get another Blood Clot and Die" I know, I do everything, I can and should do here and My Husband, knows it too. He Thanks, Me Everyday. What they said, to Me, Today, just really, brought Me down. I understand, that My Husband, has other Medical Problems, in Addition, to Kidney Failure. He understands, that too. I also know, that His Time, could be Limited. It is just, Him and I here. I am His only Caregiver. A Caregiver, not a Doctor, not God.
I can't control, the outcome, of any of His Days. Thanks, for Listening, to My Vent, Tonight. That's all it is, a Vent. I Promise, not to do it too often.
I LOVE IHD!
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Call me!!!! :cuddle;
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God speed my friend
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Awww Mizar....What a crappy day for you. I would have lost it too. I'm sending you a hug, it sounds like you could use a few. Hang in there...tomorrow is a new day. :cuddle;
And, WTW...I'm so happy to see your face.
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Im so sorry dear wife/caregiver extrordinare (bad time for bad spelling) Its so hard and when someone doesnt take into account all of what you are faced with and are doing. I had that once from a dr, and it shot any energy i had left down the drain so i really understand. I know any of us cargivers will understand I hope tomorrow brings some reliefe.. We had a bit of a rough night and i feared we were heading on that down part of this. I felt so fearful. Im sorry you are there right now.. Bless you, and prayers for some comfort and rest and peace..
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Yes we understand. I hope today is better than yesterday. I hope things work out. If I could I'd go :boxing; some :sir ken; for you.
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:grouphug; :grouphug; :grouphug;
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Mizar, I care for what is happening to you. If I could take some of your load, I would.
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uggggg, so know how you feel :grouphug; :grouphug; Do you know how many times I have been told they'll let the transplant center know Otto is non-compliant if we don't do what ever it is they want us to do. I am one not to mess with as I :Kit n Stik; :Kit n Stik; Hang in there, is there anyway for you guys to use a transportation service so you have a little taken off your shoulders????? :grouphug; :grouphug; :grouphug;
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mizar, You have got such a lot on your shoulders, it should not be like this. At times I think we all have to play, doctor, nurse and no we are not gods, at times it seems like we are banging our heads against a brick wall. It is easy for some one to say "we want you here at what ever time" It is a struggle and they can not see that. I can understand your frustration, you are doing your best, that is all you can do. Please keep coming and venting, it does you good to spit it out. Hope you have a better day to-day. I will be thinking of you both.
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I am sorry the doctor and clinic people are not trying to make your life easier. When did we become a society that stopped trying to help and lift one another up? It is so easy for healthy folks to sit in judgement and say, "you aren't doing a good job" or "do better". When the hell did compassion leave the medical field ya know? (first do no harm) I am so sorry that you are going through this...
thinking of you...
xo,
R
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:cuddle; Take it from me, the Whine Expert...whining serves a very useful purpose. It's an release valve, and it's vital to have a release valve. Trying to be upbeat ALL the time is impossible, and when you fail being upbeat, then you feel guilty for NOT being upbeat, and the cycle continues. So if you feel like having a Poor Me Day, have it and then get on with a better day tomorrow.
Would it be worth having a word with his social worker? If you are feeling overwhelmed, can the social worker offer some suggestions?
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Thanks All. I do feel Better, Today, as I knew, I would. It seems, sometimes, that when I try to Talk, to Others, in the Non-Dialysis, World, they are so quick to come back with a " YaDa, YaDa, YaDa, been there, done that " Really? I don't think so. When We come to this Site and Read what others are saying, alot of it is not very Nice stuff, but We know what others are Saying and what they are Feeling. We were Thrown, into Dialysis, in a Matter of Hours and neither One of us, knew anything about it. I Wish a Site, like this did not have to be, but it does and it keeps, Me Grounded, knowing, other People Understand.
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You are right this site does keep you grounded. At times I do not think I would of managed without coming here nearly every day while John was ill. It was only talking to people in the same sort of position that helped me through and are still helping me. I often felt I knew more than any of the Doctors and pretty sure I could write a book on it. We kept a day to day dairy right from the start of John's illness, every visit to Dr. and hospital, I still have it not quite sure what to do with it now.
I am glad you feel better today. have that glass of wine. I understand how you feel :grouphug;
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Oh Mizar, your post is heartbreaking. I wish I lived next door and could help. I hate when medical people treat us like children and think we don't know how important the clinic visits are. As the patient, I hate putting this burden on my family. I know your husband appreciates every thing you do to make his life better. I think you must wear a halo and wings because you are a real angel. Skip the glass, have the whole bottle!! :wine;
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:cuddle; :cuddle; :cuddle; Sorry for what you are going thru Mizar. I do know what it is like to be a caregiver. They act like you have no needs of your own. And, you DO!!! So, yes, have a glass of wine if it helps you feel better, or post here, whatever works for you so you can hang on to your sanity.
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That's what I feel like I am doing Today, having a " Poor Me " Day and I Hate it, when, I do that and try not to let it happen too often. I am not the One, with the Health Issue here and I try to stay Focused, on that fact. The last Two Days, have just Stunk. My Husband is on Couminldin and they just can't get the Dosage right. I have to drive Him to D and to the Dr's for PT/INR tests on His Blood. His Neph, won't do the Tests, so We have to go, to His Primary Dr. for this. He had His Blood tested on Monday at the Drs. Office, They called us Tuesday Morning and said, it was High and they no longer wanted to handle it. They wanted Him to start going to a Coumindin, Clinic at the Hospital. I took Him to the Clinic on Wed. Morn. They called later and said, His PT/INR was at 6.8 and it must be checked again the next Day. So We get up at Six, for Dialysis, Yesterday and His Nose is Bleeding. Bad Bleeding. I couldn't take Him to D, so We went to the ER. This took Four Hours and they gave Him a Shot of Vitamin K. As soon as We got out of there, it was off to D. The Shot did nothing. His Nose Bleed, until Three A.M. this Morning, 22 Hours Straight. I asked Him Twice, if He wanted to go back to the ER. but He refused. We were supposed to go back to the Clinic Today, but I called and asked if I could bring Him in on Monday, instead. He is Exhausted. He uses Oxygen. He has to use a Wheelchair. The Woman at the Clinic said, to Me " If He does not come Today, He will no longer be in the Clinic " I lost it. I started Crying. I never do that. I told Her, " I will get Him, in, Somehow "
Five Minutes, after I hung up from Her, His Primary Dr. called and said, " We worked very Hard, to get Him, into the Clinic and if YOU, don't get Him, to every Appt. He could get another Blood Clot and Die" I know, I do everything, I can and should do here and My Husband, knows it too. He Thanks, Me Everyday. What they said, to Me, Today, just really, brought Me down. I understand, that My Husband, has other Medical Problems, in Addition, to Kidney Failure. He understands, that too. I also know, that His Time, could be Limited. It is just, Him and I here. I am His only Caregiver. A Caregiver, not a Doctor, not God.
I can't control, the outcome, of any of His Days. Thanks, for Listening, to My Vent, Tonight. That's all it is, a Vent. I Promise, not to do it too often.
I LOVE IHD!
If an InR is 6.8, then that should require immediate attention and not be rechecked the next day. With a level that high, he could have had some real troubles...more than what you experienced....6.8 is dangerously high... It was the Docs responsibility to follow up...
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Mizar, how are you today? Hope everything is on the up. Now, be a love and pass the cheese (I'll skip the whine today thought, thanks!)
;D
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:grouphug; I hate when the medical people treat people as if they don't know anything. I was a bit miffed at the last appt with the neph . There is a team of them and they take turns coming to our area for a clinic. This guy was young and he kept asking me questions about hubby instead of asking him!!! I was tempted to tell him that hubby is able to talk!!!
Whine anytime you like!! It really helps most times. :cuddle;
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Mizar, how are you today? Hope everything is on the up. Now, be a love and pass the cheese (I'll skip the whine today thought, thanks!)
;D
mmmm now I want some cheese! ;D
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Coumadin Problem Solved, sort of. Seems, that as of Yesterday, the Dialysis Clinic, decided, that Ron has a Clot in His Fistula. We go to the Surgeon, next Monday to get it taken care of, in the Office. In the Meantime, they want Him to stop the Coumadin, completely, till the Surgeon, works on Him.
Last Week, they said, " He can't go a Whole Weekend without it ." Now they are taking Him off it for a Whole Week.
and - on we go to next Week.
To Quote, someone else on this site, and for the Life of Me, I can't Remember Who, " Dialysis, is not for Sissies "
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To Quote, someone else on this site, and for the Life of Me, I can't Remember Who, " Dialysis, is not for Sissies "
and your not kidding it's not......
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I LOVE IHD!
Well I do have the cheese here in the Cheese capital - Wisconsin. You whine all you want. You've every right to. It's so Not Fair!
For the Coumadin issue, Have his docs checked his genes that manage the important enzymes that metabolize the drug? There are these genetic predispositions to drastically different than normal reaction to Coumadin or Warfarin. These tests are called VKORC and CYP2. They control metabolism of Vitamin K. I will try to paste a description link here--excuse me if I oops -- http://www.bcw.edu/ucmro/groups/public/documents/documents/000326.pdf
I happen to know this as I'm a molecular biologist who's worked on getting this technology to our center. And, my daughter has just had a kidney transplant and been on dialysis. The link is for our blood center lab (one of the best in the world--and where strangley and coincidentally I work) where some rare and unusual test are done. These warfarin sensitivity tests are done other places too and your docs lab should know where to send it on to. No advertisement here, just information.
It might be his coumadin levels are difficult for other reasons, but do ask if they have looked into this vitamin K dehydrogenase mutation and CYP2. It's a new test docs need to know about, and some don't. Getting his level right is important. I'm sorry it all falls to you. It's Soooooo Not Fair. Now in addition to being dedicated caregivers we have to hold the doctors hands too (I know all about that in my line of professional work and as an advocate for my daughter). It never ends! At least :grouphug; you aren't as alone as it seems. :grouphug; I'm here! And so are a lot of others!
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:stressed; Whine away all you need! :rant; I don't know your story as I just found this board yesterday and NONE too soon before I went bonkers! I'm just feeling around and found your post and I just want to ball for you, There has to be resources out there for you so you never have to feel this way again, I agree with the post to start with your social worker, That type of treatment is ignorance and they need to find a way too educate these people to help you instead of hindering. I would be very interested to know where you are. There are actual agency here that will step in and help you especially with the drs. Here's wishing you peace and a very good New Year! Here's a BIG Hug for you! :cuddle;
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I feel for you and hope it gets better.
Some people in the health professions have no compassion! That is something they don't learn from a book or classroom. If they havent been brought up to be compassionate they will never be. I would have broke down if the clinic told us this. Todd has missed dialysis here and there lately cause either he is too exhausted to get there , or he falls on the snow and ice and has a horrible day from that. He is still in a lot of pain from his auto accident in december.