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

[Jean]

What a relief and what good news!!!   

[del]

When hubby had 25 lbs of fluid on there was no fluid to see .  No swelling at all. It was hidden in his blood vessels.  Keep a close eye on your "hubby's eye".  Hubby has to go get his checked every 9 months with the opthalmologist.

[bevvy5]

Interesting point about the eyes.  When hubby was completely dehydrated before he came off PD onto hemo, he was having problems seeing, his vision was quite blurry and his eyes felt dry all the time. The optometrist suggested some drops and so forth.  When his fluid stabilized - he actually went up about 8 kilos as they were not taking any fluid off during hemo for about a week - he could see just fine, no more drops.  I guess it would be similar with too much fluid.  Definitely something to watch if it's an ongoing issue but hopefully they'll get him sorted out and he'll be doing much better.

[looneytunes]

BW...I love the termiage!  Keep it coming, kiddo!  Thanks for the grin.

Krismimo, the blood vessel issue should clear up once he is getting good dialysis again.  Hubby also experienced this at the end of his PD stint.  Once he switched over to hemo, he has not had this happen again.  So glad things are getting better for you.  Don't be hard on yourself.....you are just one person on the team.   

[krismimo]

HAHAHHAA testy sack so very funny! Thanks again for all the support, we have been consistent with the dialysis for last few days hubby says he starting to feel much better. Tomorrow we go in for Pre Op appointment for his Pyrothyroid glands he is sch for surgery  for the 6th. This week is going to be crazy between him going to dialysis and being at the hospital almost everyday. He has is laser surgery (for his right eye) this Friday finally after a month! Ever since we have been married hubby hasn't been under the knife this is the first time and I'm a little nervous and I just want things to go smoothly.

[krismimo]

UPDATE!!!!! So we went in for the Pre Op today and it went ok as expected. His potassium is high and if he doesn't get it under control by next week they will postpone the the PTHD Surgery. As far as his stomach goes, he has to do a colonoscopy this Wednesday (Part of Pre Op). Only problem is he is a kidney patient. He will do In center tomorrow so maybe I could ask them. Please keep the prayers coming along they are a big help. I'm looking forwad to his laser surgery this Friday. I'm already wiped out and it is only Monday. But I count m blessings, it could always be worse. I have also decided that I think I want to to the mix between In center Hemo and at home a few more months if they can take him. I'm thinking for the rest of the year if possible. lix 3x a week there and 3x a week at home.

[fearless]

that is so great if you can do that.  Hope all the surgeries and procedures go well!

[lmunchkin]

Yes that would be great if that can be done.  The only draw back is that I think In-centers try to "rush" his blood threw machine instead if slowing it down some!  I know most run a very high blood flow rate and that could not be good for his heart! But maybe this clinic is different!  But please be mindful of it Kris.

You are doing a good job and Im praying strength for you both!
God Bless,
lmunchkin
 

[boswife]

just a note on this (ie the running faster in center) ... we have had to go in for transfusions a couple of times latly and they run the speed i ask them to.  and with no fuss about it.  I think being 'hommers' as well, we have more 'say' in what we want.  Check that out

[lmunchkin]

You are so right Boswife.  J. aint been back in-center, but if he does for some odd reason, I hope they listen when I ask them to slow down.  Most the clinics around here are full, and thus, the rush to push them through!  You know "Assembly Line" effect!!

I just wish they offered Nocturnal In-center like Looney, but it would be difficult, cause of my job!

lmunchkin
 

[krismimo]

UPDATE: :thumbup;Ohh Ok good to know I'am meeting some of the people at his new in center for the first time. So it is good to know. He had his colonoscopu today no cancer! Yay alhtough they did run test on his stomach he still has too much fluid. but it has gone down some, were trying to krank out the dialysis treatments in between. His eye appointment is this Friday and on Tuesday he is suppose to have his PDTH surgery.  So far...so good. Thank you for all  the support!

[lmunchkin]

Great!!!  I know that eases some tention on you!  Still praying that fluid will be removed soon.  That fluid can be a stickler sometimes.  It can get on the lungs, heart ect..... Want to continue to remove it.

God Bless,
lmunchkin
 

[krismimo]

Minor UPDATE: About to get off Work Hubby is at In Center Today. They are so nice and helpful were about to get a new machin in about a few weeks. Now tomorrow is another big day. Hubby has not been able to really see fore almost a month now. Two eye doctors looked at his eyes and said it was fiaxble now tomorrow his right eye is getting the laser procedure. I'am so anxious I hope he can see again. Thanks again for all the support. This weekend is going to be a long one, THen on Tuesday he is sch for surgery for Pyra theroid surgery. So far things have been going good. Thanks for all your concern and insight. I will keep you posted.

[krismimo]

 
UPDATE!! We have been waiting for this eye appointment for 1 month. The eye doctor cancels and the nearest and or closet appointment is toward the end of the month! Which means it will be about two months since he has lost his sight. I'm so p****ed off right now I'm seeing red. On top of that his PDTH surgery almost go cancelled bc the surgeon is still sick. My husband is so upset he just went to lie down. I wrote a long grievance complaint at out hospital. We can't go to another hospital because he is going in for surgery on Tuesday. I just feel so beat down right now for him. I want to cry out of frustration. But what is the point. We have to wait regardless and the result is just the same. SIGH happy friday my a**.  lol

[del]

Sorry this is happening!!!  It makes me mad too when things get cancelled and then can't be rescheduled until much later..  I called the dialysis nurse today to see what hubby's last PTH levels were.  It had gone up from 1300 to over 1900!!!!  He is taking 90 mg of sensipar a day.  They will increase it but his calcium needs to be higher before they do because sensipar lowers the calcium. Looks like he may be heading for surgery to have the parathyroid removed GRRRR!!!

[boswife]

unbelieveable!  Im really not good with things like that.  It's so hard to wait and then this!!  wow!  I hope that mabie you can make morning calls and get an apt sooner???  Thats what i have done.  I dont know if they get sick of me calling, but 'usually' we get fit in much sooner than originally told we could.  Bless you and bring you rest as well.  It's HARD on us when they are not only physically ill, but when it gets to there emotions as well, it becomes unbarable    Im so sorry.  I wish you well..

[sutphendriver]

This may be late but if you call Amgen, the makers of Sensipar, the will send you a card to get your meds for 5$ a month if you have a private perscription plan, ie..not Mediwhatever  1-866-711-4162

[natnnnat]

I don't know anything about parathyroid function, but I was thinking maybe when his system has had time to straighten out with the change in dialysis, his parathyroid might work alright again?  So I was a bit worried, reading this thread, that they were still going to 'whip it out', without giving him a chance to get back to some kind of normality and see if the parathyroid recovered too... and that all the invasive stuff (colonoscopies etc) aren't going to help his body recover either.   So maybe this delay might be good?  Will they test him again before they go ahead and take out the parathyroid?  I mean, it might still need to come out, but given all the other stuff that was happening at once... ?  Just a thought.

[natnnnat]

Looking back at your first post, all those various possible diagnoses (cancer, for example) were coming from people who weren't renal specialists, but other kinds of specialists?  I ask because then you said that you were worried to speak to his renal doctor.  Doctors don't necessarily see the body in the same way, and the specialists looking at him in your first post didn't read that list of symptoms as renal.  But their decision (to remove the parathyroid) was based on the perspective they had that day, before the renal specialist pointed out the need for more frequent dialysis.  So that's kind of why I'm wondering if the parathyroid thing could be a side effect of his whole system going out of whack due to kidney stuff.   I'll stop thinking aloud now.  Hope you and he are getting some peace today, its been such a horrible roller coaster for you.  Hope you had that stiff drink you were planning. 

[natnnnat]

Me again!  Hee hee, I told Gregory about Boswife's husband (Bo?'s) problems with the testy sack.  He said, Bl** hell!  I've never had nut swell! 

[lmunchkin]

You may be on to something here, Natnat. Sometimes too many "fingers in the pie" in such a short time span, can not be good for you!  Allow time for one thing to work, and especially after another lab result, before just jumping in there to remove body parts!

I know of your frustrations, Kriss!  It seems it never ends and in some cases, it never does!  But we have to do what we must for them.  Take several deep breathes before you react.  I find myself doing that more often than not.

Thank God, you have your job to go to.  It gives time away from all the drama, but it can be exhausting none the less!

Praying for you, and it will calm down, I hope, for you and Him.
God Bless,
lmunchkin
 

[krismimo]

Hey all! Right now at work I figured to let you know were doing all right!. Thank you for all your concerns. Were blessed to have a wonderful kidney doctor and we have known for af ew months that he may have to do the surgery. He told her awhile back that he can't afford the sensipar and she said well the other alterntative would be to remove his pdth by coeinsidence his symptoms (although it took awhile) did take affect on him and his hormones are going crazy theyre like in the 2000.

With that and us slacking with his treaments did not helo things either. Everyone has been very cautious, we weren't ready to hear it at the time about 6-8 months ago. Plus over time we learned that even if he didn't do the surgery now regardless when he does receive a kidney he would HAVE to get the surgery anyway. So I l look at is as were getting it out the way. Tomorrow is the big day we have to come in 545am oh joy! We spoke to the Surgeon and she was very friendly and professional she put my mind at ease. Now as for his eye doctor I'am going to have another serious talking to while my hubby is in surgery. Hopefully the can do the laser procedure while he is in the hospital it sure would be a great help and a blessing. I'am a little nervous but I'am ok just want this to get over with and know he will come out ok but something tells me he will. I also found out that the hubbs had to get colonoscopy anyway for his transplant so I look at that has a positive thing especially since they said he is all clear and he wouldnt need another check up for 10 years! Any words of wisdom and advice is more than welcomed.

[boswife]

well well, we do have our days laid out for us dont we    It's amazing how these stories get to feeling so familiar as pretty soon, it seems we all get around to having such similar *busy* times, and then it levals out for a while.  It'll be good to hear when your's levals out and on the upside..Hope the time for you both passes pleasantly as possible...

And Natnnat,,,  yeppers, nut swell is what it was  lol  If it wernt a 'bit' frigthning for him, he would have laughted too... 

[krismimo]

amen to that, I think I'm going to be on here while hubby is going through surgery something to keep my mind busy. He is cool as a cucumber. And I'm the nervous one! But I know he will be ok I just have to be patient and pass the time doing other things.

[krismimo]

So today is the big day! it is about 630 am and right now I'm waiting in the waiting room, they will call me when I can stay with him for a bit just before surgery. His surgery starts at 7:30 I think by 9 he might be finished. Well keep those prayers coming they have helped so far I will keep you guys posted later on in the day to let you know where things are. Thanks for everything!