Terrified for my Husband's Doctors Appointment (Help!)

[krismimo]

Okay here goes, it has been hell the last couple of weeks. My husband has had End Stage Renal Failure for almost six years now. A few weeks ago his sight went bad, we went to the doctors twice and they said it was fixable and he will have laser treatment next week. At the same time he is scheduled for a surgery due to his glands over reating and they are in the process of testing him to remove those glands that are over producing hormones. While we were prepared for the surgery the doctors notice that my husband had this abnormal bloating which concerned them, we thought it was due to the over reactive glands which can cause bloating. They were afraid it might be cancerous I'm freaked out of my mind. Although we took a CT scan and they said there is nothing there but fluid (No tumors) I'm so scared to talk to his kidney doctor. The good thing is that he has no bleeding in his stool and or mucas, no nausea, and no tumors, healthy appetite and oddly no weight gain just flluid trapped in his stomach. But he does have vomiting (not from nausea), mostly from coughing. I was reading all kinds of things from something as simple as extracting fluid from the stomach to the possiblity of liver disease. His doctor wants to see him tommorrow and says it is important. I'm scared and my overreactive brain is not helping. Anyone been in this situation before? I could really use some prayer right now.

[fearless]

Of course I can't guess what's going on because I'm not a doctor, but if he's had ESRD for years and is not on dialysis, could it just be that maybe now it's time for him to start?

ESRD causes bloating, vomiting, etc.  and possible the glands you mentioned: could they be parathyroid glands?  Those are often overactive in kidney failure.  Has he been taken care of by a nephrologist during the last 6 years?

Of course I can say a prayer for you both.  Please don't feel too upset til you know what's going on.  It might be OK after all.  All the best to you.

[bevvy5]

There are just all sorts of things that it could be.  Try to think positively, which I know is really hard.  No doubt it's something important to take care of, but it may have a relatively easy solution. 

Personally, I'd always rather just know what's going on.  It's usually not as bad as the places my imagination take me.

I'll be thinking of you and wishing for the best for you and hubby.

[krismimo]

He has been on Dialysis for almost six years and yes he is going in for surgery for the pyrotheorid. Thanks Bevy I'm trying to stay positive but I'm so nervous.

[MooseMom]

I'm praying for you both.   I have no idea what could be the cause of this fluid buildup, but "just fluid" doesn't sound like cancer to me.  Why did the docs say they think it may be cancer?  This makes no sense to me, but I'm no doctor.  I hate to think they're scaring you for no reason, but I guess that's better than scaring your FOR A REASON!

Let us know what the docs say, OK?  Try to get some sleep if at all possible.  I know it will be very hard to relax...

[krismimo]

At first I think they thought it was cancer I dont think it is either, but I just like to know what the heck is going on. I will give you an update. I'am trying my best to keep it together. Thank you for the support!

[Jean]

I dont know what to say, except keep your chin up and think positive. Soon you will know what is going on and I am hoping it will be nothing important at all. Please keep us posted. Poor guy, End stage for 6 years, he must feel terrible.

[Traveller1947]

 I'm praying for you, Krismimo, and for your hubby too.

[del]

What type of dialysis is he on or even is he on dialysis yet???    I'm wondering if it is PD.  My husband got really sick on PD when it stopped working.  He basically went blind and had 25 lbs of fluid on.  Once he changed to hemo he was fine.  If he isn't on dialysis it may be time to start.

[The Noob]

sometimes, an alternative to the pth surgery, is sensipar to lower it. home hemo will do same. just asking is all. 6 years of this you are no doubt quite versed.  keep us posted!

[krismimo]

You are right the noob but that medicine is about 200.00 dollars a bottle here and they don't make a generic brand. My husband has been on dialysis for almost six years now, he did clinic 3x a week for four and for about two years we have been doing them at home. Were getting ready to go the hospital as soon as I know what is going on I will keep you guys posted! Thanks again for all the replys and support!

[del]

Sensipar is VERY expensive.  Hubby is taking 90 mg a day.  The cost is over $1000 for a months supply!!  Luckily I have good insurance and we only pay $8 a month.  What type of home dialysis is he doing - hemo or PD???

[krismimo]

Thank you all so much for the support! I have been burnt out lately. Our kidney doctor said the fluid is accumulated through inconsistent dialysis treatment and it will go down in a few months. I admitted that  have felt over whelmed and we set up in clinic where he will go three times a week and at home for twice a week. I feel so bad but I have been under a lot of stress but at least we know what to do now. Thanks again for the prayers and support.

[MooseMom]

I knew it, but I was reluctant to speculate!!  It was the only real rational explanation!  So, is the neph going to change his dialysis prescription?  What will happen next?

You must be so relieved!  I know I am!

[del]

I knew it too!!!  He was just like hubby was when PD stopped working!!  Glad you found some answers!!

[krismimo]

Thanks guys! Well she suggested that If I feel burnt out to do a mixture of home dialysis and clinic so he will be doing dialysis for six or maybe 7 days a week. She said over time the bloating will go down with more consistent dialysis she said by summer it will go away. I'am so releaved and disapointed in myself I wish I could have been a better caretaker but I'm doing the best I can, the lesson I learned is it's ok to ask for help. I love our doctor she was firm but very understanding, and she listened. I'm happy to have her. I think once I get off work I'm going to have a nice glass of wine maybe a couple or maybe something a little stronger. Jeeze louise what a week. The adventure continues thank you for being here you all made me feel so much better. I love this place.

[MooseMom]

You shouldn't blame yourself for his "inadequate dialysis".  You're not his nephrologist.  His nephrologist made a clinical decision to prescribe more dialysis for a certain length of time to address a specific problem.  It is essential that you see yourself as part of a team and not as the lone provider of care, and as the member of a team, it is your responsibility to ask for the appropriate help from the appropriate person.

That's great that she addressed your needs and suggested your husband could do a mixture of inclinic and home hemo.  So, what will happen next?

[krismimo]

Thanks moose mom I agree with everything you said, I'm still new at this and I'm learning to "work the system" I think for at least two months I will have him go to in clinic for few times a week and do like 2x a week at home or 3x a week at home or 3x in clinic still trying to figure out what is best. I'm just happy that things are getting take care of and he is going ot be ok. I think I'm also going to get a part time caretaker and figure out something for transportation that makes it easier on the both us and were more organized into a routine, I'm learning to work smarter not harder.

Thanks again and any suggestions are welcomed!

[del]

Don't blame yourself because it is a team effort.  Never be afraid to ask for help.  When PD stopped working for hubby we asked for help but it fell on deaf ears.  He gained weight, had vision problems and was even to the point of seeing things that weren't there.  His b/p was through the roof- 230/130 and his dialysis nurse told him that was normal for a dialysis patient. DUH!!  It isn't normal for anybody!!  He finally called and said enough is enough I am not doing PD any more.  I want a chest catheter put in (he had a fistula that wasn't matured) and I want to start hemo.  Within a few days he felt better. His sight started to come back and in less than 2 weeks he had 25 lbs of fluid removed!!

Be very careful with the eyes.  After 8 weeks of complaining hubby was sent to an opthamologist.  He was told that because of the fluid there was swelling behide his eye and a blood vessel was about to burst and if it did he would be permanently blind.  He was dialyized every day for 2 weeks and once the 25 lbs of fluid came off his sight came back.

[bevvy5]

Add me in as one of the relieved that this is a fixable thing.  Sounds like the team is coming up with a plan.  Just try to keep close tabs on things and if part of the plan isn't working for you, just keep insisting on more help.  Sometimes that's hard but I figure it's much more efficient to get some  help before things end up in an emergency situation.

Don't take this as a failure on your part.  We're not medical professionals, or at least I'm not.  All we can do is our best to keep our people as healthy as we can, while making sure that we work enough to pay the bills and look after most everything else going on in life. 

[lmunchkin]

Oh Krisimo, I know exactly how you feel!  Husband started out on PD then it fizzled out.  He went in-center for almost a year, when we started NxStage at home.  I work a job during the day, then come home a put him on machine for 4hours.  I was geting so frustrated and just making things harder on myself than I should have.

Eventually, I started to not look at it as a job, and made it a "fun" time for us both, so it would not be such a hardship for us both.  Yea it is no picnic, but with a different approach/attitude towards it, it does seem to have gotten better! Sometimes I just get up in bed with him and we watch TV, play cards, monopoly or whatever.  It helps pass the time away and the stress of it seems somewhat eased.

Don't blame yourself, dear!  We have all been through that too!  You do the best you can with what you got!  That's all any could ask for.

Please take time for your self so that you won't fall sick or something.  He has this disease, but needs to know that you are living with it too.  Just continue to do your best in his care!  He knows and understands that this is hard for you, trust me! He didnt ask for this for your lives, and neither did you.

Take care and let us know how we can help.
lmunchkin
 

[krismimo]

Oh my goodness! A blood vessel did pop in his eye and he has trouble seeing! But the doctors said it was fixable through laser treatment. THey didnt say anything about blindness I hope he weill be ok! As far has his weight it is the same it has not changes really, the fluid is in his stomach which they said is the most manageble and shoulde go away. I'am starting to think that the fluid and the eyes are connected. Maybe something to think about, I'm so happy for you that his vison returned.

[boswife]

Wish i had been here for suport sooner,,,,,,,,, but!! im here now and one thing i can add is that bo (hubby) also has had blood vessles break in his eyes.  and yes, for him anyway, it is renal related, but, not fluid overload.  They burst, he gets them cartorized, and then hasnt had that now for at least 2 years.  Didnt effect his sight except a tad until the blood drained out.  (dont know where it goes, but it does)  He said he coud see the blood in there, or a dark area in his eye.  It was weard and scarred me more than him as he has more confidence in drs than i    I love his optometrist and did have trust, but still, well, ya know, im a worrywart.  So, that part is prob just fine as well as the overload.  Dare i mention that hubby had overload in his... ah hem, testy sack..  (dont know that is correct termiage..lol)  Now that was nearly funny, though terrified him.  Once again, that water will find some pretty sneakie places to hide so we just now take real care to keep it off as best we can..  It was real incentive to not over drink..lol  Im so glad Your getting help, and CAN do the incenter and home to accomplish what ya need done.  All the best, and though i couldnt give prayers sooner, im sending now 

[MooseMom]

"TESTY SACK"!!!

Oh lordy, that's bloody brilliant!  I haven't smiled in 7 days, but now I am.

[fearless]

krismimo,

So glad this is something that can be resolved with some time.  Don't get down on yourself.  It's really not your fault and your hubby is so lucky to have such a loving spouse that will care so much and worry so much!  But, you gotta stop that worryin' part!

God bless