Taken for granted.....

[tweetykiss]

I will just be brief here.....my husband and I met in summer of 91 and then married in fall of 92 and had all these wonderful years.....we did have some setbacks like when I got sick in summer of 99 which I will not go there but I got out of that and ax a result my last job fired me a year later and I wanted to sue them and dirty up their name but lawyers would not take the case saying that in this state companies are allowed to fire without a reason so instead just to be spiteful I was calling the very few friends I still had there and told them how the boss was very dirty to me......one of my few friends was a gossip over there so that is especially why I had to dirty up the company's name when talking to her......I gave this company six years of my life and felt very betrayed and treated unfairly.........now please keep in mind that I am not really spiteful......I just didn't appreciate how this whole matter was handled.....

Ok now on with this....in summer of 2002, my husband was in a near fatal car accident and he had to have emergency aorta surgery and by a miracle survived it.....I thanked God and high heavens for that and my faith in God became very strong......the night of the surgery I prayed like I had never in my life before.....however after the surgery, my mind was not the same for a good solid year since reality sunk in too much and told me how close to losing him I was and our lawyer kept telling me Mike should be dead as bad as the surgery was.....we tried to sue the other driver (all he had was a sprained leg while Mike was fighting for his life) and he didn't even send an apology note....and he was also in hiding......he lied to his insurance company and that is why we had a very small amount of money in our settlement although Mike's life is more important but we still wanted to sue the pants off this drunk kid.......but he had no money or so our lawyer had claimed.....

Now on to 2006, we started having marital problems.......I wanted out and felt trapped in this marriage and we were not really getting along at all.....I still have no clue what was really happening to us.......I never cheated on my husband and he never cheated on me but last Spring I was talking to this one guy on the Internet who I met at a blog site and he happened to live here too and when he asked to meet me I did tell him I am married and that  I prefer not to meet him so that was the end which I was glad then and I am more than glad now.......I feel guilty for even talking to him  but mind you that I never flirted with him.......

First of the year 2007.......I told my husband we have decisions to make and he said let us give it a chance......I agreed......I am glad of that part....then back in March, he started to get the misunderstanding that I no longer wanted him that one day he drove to his mother's house and told him he wants to stay there because I no longer want him so his parents drove all the way here with him and she confronted me saying "What is going on, he tells me you no longer want him" I told her "off course I do and I kissed him and showed his parents the Valentines day card I made for him using PSP and explained that we made cards for each other this year since it was below freezing and could not get out, when she saw my card, she scolded Mike and said he was very lucky to have me when I am really the lucky one......I was so glad that issue was settled once and for all......

Now my point of this whole post is I feel I am being punished for all these things....and my husband's kidney disease is the punishment I am getting.....so I told Mike yesterday about last year and he thinks he was completely at fault when he really was not...we both prayed and asked for forgiveness and begged for Mike to get well......

Please pray that the nephrologist's appointment today goes well and that something can be done.......I need Mike in my life and I will go nut if I lose him.....




EDITED: Moved to proper section - Sluff/ Admin

[Sara]

I said a prayer for you.  I know how health issues take such a toll on a marriage (believe me, I KNOW, there are issues I've never even posted about here). 

I do know that this is not a punishment for you or your husband.  Unfortunately it's just the way things are, and we have to deal with them the best we can.  Hold on to your faith, try to grow stronger in it (I know I try, but I still need a lot of improvement).  Hold on to each other as well and don't let it tear you apart.   

[tweetykiss]

I said a prayer for you.  I know how health issues take such a toll on a marriage (believe me, I KNOW, there are issues I've never even posted about here). 

I do know that this is not a punishment for you or your husband.  Unfortunately it's just the way things are, and we have to deal with them the best we can.  Hold on to your faith, try to grow stronger in it (I know I try, but I still need a lot of improvement).  Hold on to each other as well and don't let it tear you apart.   

Thanks so much Sara,

I guess I did not clarify that last year when the trouble in our marriage started, he was very healthy...the disease he has now only started back in the Spring......

Thanks again for your well wishes...they are much appreciated...........

[glitter]

A disease or an accident is NEVER a punishment!!!  Look at how many good people have kidney disease and look at how many lowlifes have healthy bodies......it isn't fair for sure- but it is NOT PUNISHMENT!!!!

[Sluff]

tweetykiss, I'll pray for you and your husband.

There is no explanation, life is not perfect that is why there is a heaven. One way or the other either you or your husband will die first and you need to except that. No matter which one of you it will be it is a reality, but you can be ready for it and live your lives so that you enter Gods kingdom and see each other again. Just the way I see it. 

[goofynina]

You are in my prayers Tweetykiss, oh, and no, this is not a punishment silly,    Keep the Faith my friend 

[tweetykiss]

Thanks everyone for your support, feedback and prayers.......I was really on a guilt trip due to the fact that when he was healthy I took everything for granted (thus the title for this thread) and when things got much better in our marriage is when his kidneys started acting up.....

Now an update.....we just got home from the nephrologiist and they said that the biopsy did say high blood pressure but that is now under control and it also showed a lot of scar tissue so he is going to talk to the pathologist and his colleagues and find out more.....he feels there has been kidney trouble for a long time and determined it is now CKD and it cannot be reversed but it can be in remission or whatever that is....no RCC, no FSGS, and no PKD and the fellow doctor (completed his residince) also does not like me reading this stuff on the Internet and even told the attending who thinks it is fine for me to read on the Internet but reminded me that not everything is reliable....now I know better than that since I get more info here........anyway he does not need dials at this point and no transplant yet and I reminded them I want to transplant if need be......I mean I will donate....I am the same blood type and that is what I told them today......I asked the attending what stage he is in and he said border of stage 3 and 4 and we can keep it there and I asked him if he can live to be an old man and he said yes....

Now they think the scarring may be from either high blood pressure in the past or some meds he use to take for a while.....he is only allowed tylenol

They took more blood today and I asked if there is anything wrong, will they call and they said yes.....

Now I have to pray that the creatinine did not rise from Friday when it was 3.7.....two weeks ago, it was 2.8 and before that it was 3.1 and sometimes 3.0....the attending said it is fluctuating now......

Please keep praying for us......

[Sluff]

It's great to receive the updates. Thanks for sharing. I too have FSGS. My protein loss fluctuates every time I'm checked also. That's part of FSGS.

[goofynina]

You know the reason why they dont want you reading anything on the internet dont'cha?  Cuz we become more knowledgeable about what is going on and we also tend to ask questions that they DONT know the answers to.  Basically, we make them feel stupid. 

[kitkatz]

Tweetykiss the universe loves you.  You may not believe it now, but it does.  Your feelings are pretty normal for the type of things you have gone through.  If you ever need to talk email or PM me any time.  There are open ears and open hearts here to help in any crisis.

[tweetykiss]

It's great to receive the updates. Thanks for sharing. I too have FSGS. My protein loss fluctuates every time I'm checked also. That's part of FSGS.

Sluff,

What exactly is FSGS.....the only thing I know about it is that it may be untreatable and uncurable.....I don't know the other other details of this......do you have a link to somewhere on this forum where you talk about your story?  So what do you do about your diet since your protein is always fluctuating on your labs?  How are your creatinines and GFR if I may ask?

To the rest who have read this thread and responded, I want to thank you for the time you took and all your prayers and support....

We got a call yesterday from his GP and he wanted to know how the appointment went with the Nephrologist......I told him everything...he had the lab results and they went down from Friday which is now as of yesterday at 3.5 so they did drop.........

Now we still have to hear from the lung doctor who wants to do a bronchoscopy since back in 05, he was spitting up blood and got admitted in another hospital and after a week he was fine so they released him but a couple months ago, it started up again so the VA took the case and did the CT scan and they want to make sure there is no bleeding in the lungs......they have to call now and set up an appointment......

Meantime I am watching his diet.........

I sure hope his kidney function does not go down anymore than what it is....

Thanks again for encouragement and support......

[Sluff]

Right now by labs are all within range of normal kidney function. Even my protein loss is down below a half a gram. First time in a year that my labs have been this good.

www.kidneyoogle.com  just enter FSGS and you find plenty of information about FSGS.

[RichardMEL]

Tweety,

I've read this thread and feel for the fear and frustration you obviously feel about all of this.. specially when it's happening to someone you love so much and feel so powerless to help. One thing is sure though - the kidney disease is NOT a punnishment. Heck if we were all being punnished there's a hell of a lot of naughty girls and boys out there.. and I haven't had nearly enough fun to be THAT naughty!!!

Seriously though try to not think of this situation in those terms. Unfortunately sometimes you just get sick for no other reason than random chance. Nobody knows how I got FSGS. There's theories and conjecture.. but nobody really knows and it was only caught by chance at a routine medical for work...

For now I think really continue to pray and savour every moment Mike has without dialysis and while you guys can do things. If you can - take a trip somewhere you guys always wanted to go, or an experience you always wanted to share.. even if it seems silly... THIS is the time to grasp hold of life and do it while still free of the shakles of Dialysis. Not that life is over by any means when or if dialysis comes to Mike, but as I'm sure you've read here it can be very restrictive. So if it was me I'd be indulging in things and experiences now....

And you said earlier you took things for granted... Tweety that is N O R M A L!! I think everyone who isn't faced with a serious disease like we are (or cancer, or HIV, or whatever) would be like that. You're young, settling into marriage etc.. enjoying everything life has to offer and feel like you have years left to continue to do so... You shouldn't feel guilty for that. That's normal. Yes, we all have a different perspective now because life has thrown us this curve ball... but remember.. even with kidney disease you both can still have all those years together... don't ever lose sight of that.

Anyway take care and stay strong... I think what Mike needs the most from you along with the diet help and so on is your support.. and coming here and asking questions so you can find out more is a good way to support him by trying to understand more what he's in for potentially.

I have every hope for a positive outcome!

[Sluff]

  to RichardMEL Great advice

[goofynina]

to RichardMEL Great advice

I agree with Sluff, nicely said RichardMel 

[paris]

The most important thing I have learned since diagnosis, is not to wait to do anything. I try to enjoy something about each day.  Positive outlook can only help. I also have FSGS - no known cause.  I have been faily stable for 2 years now. Watch the diet, learn all you can and be glad for each day.  Coming to this site is a great start  ---- glad you are here!

[tweetykiss]

Tweety,

I've read this thread and feel for the fear and frustration you obviously feel about all of this.. specially when it's happening to someone you love so much and feel so powerless to help. One thing is sure though - the kidney disease is NOT a punnishment. Heck if we were all being punnished there's a hell of a lot of naughty girls and boys out there.. and I haven't had nearly enough fun to be THAT naughty!!!

Seriously though try to not think of this situation in those terms. Unfortunately sometimes you just get sick for no other reason than random chance. Nobody knows how I got FSGS. There's theories and conjecture.. but nobody really knows and it was only caught by chance at a routine medical for work...

For now I think really continue to pray and savour every moment Mike has without dialysis and while you guys can do things. If you can - take a trip somewhere you guys always wanted to go, or an experience you always wanted to share.. even if it seems silly... THIS is the time to grasp hold of life and do it while still free of the shakles of Dialysis. Not that life is over by any means when or if dialysis comes to Mike, but as I'm sure you've read here it can be very restrictive. So if it was me I'd be indulging in things and experiences now....

And you said earlier you took things for granted... Tweety that is N O R M A L!! I think everyone who isn't faced with a serious disease like we are (or cancer, or HIV, or whatever) would be like that. You're young, settling into marriage etc.. enjoying everything life has to offer and feel like you have years left to continue to do so... You shouldn't feel guilty for that. That's normal. Yes, we all have a different perspective now because life has thrown us this curve ball... but remember.. even with kidney disease you both can still have all those years together... don't ever lose sight of that.

Anyway take care and stay strong... I think what Mike needs the most from you along with the diet help and so on is your support.. and coming here and asking questions so you can find out more is a good way to support him by trying to understand more what he's in for potentially.

I have every hope for a positive outcome!

Richard,

It is unfortunate that disease and cancer as well as HIV hits the ones who want to treasure life and those who don't "misbehave"......I think I am starting to come to terms with this but I know it must be since he is not on dials yet and they say no transplant yet.....I will be his donor since I have his blood type......I read your sig and I am glad you are on the list....can I ask why you were not on it sooner?  How is hemo going for you?  You did the right thing by changing doctors......now when you were diagnosed with KD, did that company hire you....yes I know a lot of questions but I also want to give support and be ears to the others here including you.....can you give me a link to your story?  I am determined that our lives will be the same other than the cooking.....I will cook his special diet and I take pleasure in it......I am learning new recipes.....read the what's for supper thread and you will see what I gave him tonight.......I also ordered this book from amazon.com called the Coping with Kidney Disease, the 12 Step Program......I will post on here what I have learned........
Thanks so much for your feedback.....you have been so helpful.....


Sluff,

I am glad your labs are good......I read that site and you do have to be watchful for protein since I read there is heavy loss in that.....now since you have the labs of normal functioning, you don't have to worry yet about swelling.....all I can advice is to be watchful.....I pray you never need dials nor transplant....

Paris, I have been praying you get your transplant and I have been thinking about you as well.....

Thanks to all of you for your feedbacks.......this site is what keeps me going and gives me positivity.....

[RichardMEL]

Paris - absolutely! Carpe Diem.. sieze the day and make the most of it. I managed some fairly bizarre trips (18 hours in London, anyone? ) before I had to start dialysis and I don't regret a minute. In fact there's way more I could have/should have done but didn't learn the lesson properly until it was perhaps too late (having said that, i try and do all I can within my current limits as well so all is not lost ).

Tweety - Yes I was hired by the company - however I think things are a little different here as the entire medical thing was actually private. I'm not sure that my then work ever found out there was an issue until I told the manager and director myself. Also that medical I did was after I'd been hired so I don't think they could have sacked me on the basis of that (but this was many moons ago in 1993 and much has changed).

As for the transplant list...  that's a bit of a complicated issue. I was actually "put on the list" in August 2003 - so about 4 years ago, but I only found out 2 weeks ago that they only really take note (down here in the land of Oz, anyway - other places may vary) of the time spent on dialysis.. and that for me is actually more like a year (I must fix my sig since it's wrong !!). I was put on the list when my doctor decided I guess but since the "time on dialysis" is the big factor then that's the "real" time I take note of.. not that it really matters since it's all based on averages.. I could get a call in 5 minutes, 5 years or well maybe longer.. though the AVERAGE here is supposedly 4 years, so either way I think I have quite a time to wait. How am I doing? on hemo? Yeah not too bad.. it has its ups and downs but most things are under control and pretty stable so it's rare I have a crash or a cramp thank goodness... it's more a bore and takes up time more than anything these days. On the upside I do get a nice cup of tea to drink and free bloodwork every month!!

Just one last thing Tweety.. I feel I should point out that even though you are the same blood group as Mike which is the first big hurdle there may wind up being no HLA matches (I think that's the right phrase) when it comes to tissue typing and cross matching.. all I am saying is that while it is quite likely you will have some kind of match to Mike and could be a donor there is a small chance you may not be... so you should be prepared for that. I don't want to sound negative at all.. it's just that same blood group, I believe, does not always mean instant match and go for donation. Either way I hope that if and when the time comes all works out well in that dept!

And if I am wrong on that last point - please someone correct me! I would hate to be saying something that wasn't true.

[paris]

RichardMEL, you are absolutely right. Blood type is just the first step.  It all sounds so simple when you are reading about donation, then the process starts and you learn all the information no one had shared until then. But, it is a start and I have learned that I only take one step and don't look too far ahead.  I try not to worry about what will happen---one day at a time - that is all I can handle.      TweetyKiss - you seem to have a good heart and it is good you are the same blood type. 

[tweetykiss]

Thanks for your feedbacks on this and I sure hope that God forbid he needs a transplant, that everything else matches as well other than the blood type......I want to be able to save him....I am just glad his labs are so so for now....they took bloodwork today and his creatinine is 3.5 and his BUN has gone down to 53.......according to their equation which they also take weight, he is at 31% GFR.........they are going to check and see if he has vasculitis and if so, they will treat him for it....the nephrologist called last night, yes hard to believe doctors will call on Sunday so I am so grateful......he wants an MRI done to see the blood flow issue as well and as he worded to me, "we are going to investigate this thoroughly".........I am grateful for this.......

Thanks again for all the support.....

[tweetykiss]

My husband had an MRI today so we will know on Monday what is going on.....they at this point don't know what is going on thus the reason for the MRI and giving him the blood thinners....I have him shots for six days and now he is only on the pills called coumadin.....I take his blood pressure everyday and it has been somewhat low so the neph suggested I give him ore protein and more sodium.......

Please pray that the doctors find the answer to this and that something can be done....

his creatinine today is 4.8 and his GFR is 14 and I am very scared.....

[lola]

 

[Bajanne]

Please don't be scared.  You have a whole group of people here sending their caring thoughts and prayers on your behalf.  Whatever you go through, please know you are not alone.  Thanks for keeping us up to date.  We are with you all the way.

[Chicken Little]

My husband had an MRI today so we will know on Monday what is going on.....they at this point don't know what is going on thus the reason for the MRI and giving him the blood thinners....I have him shots for six days and now he is only on the pills called coumadin.....I take his blood pressure everyday and it has been somewhat low so the neph suggested I give him ore protein and more sodium.......

Please pray that the doctors find the answer to this and that something can be done....

his creatinine today is 4.8 and his GFR is 14 and I am very scared.....

I hope everything went well Monday.  Take care.   
   

[zekewolfy]

I'm sorry to hear you are going through some rough times, and I wish you luck. I just want to point out that Kidney Disease is not a punishment.
And if it is, then God can drop dead, as I have wronged no one.