Frank's having a pretty rough time.

[frankswife]

Hi all, Frank has been having trouble with shortness of breath. He's actually had this very mildly and very sporadically for several years, but it became much worse while we were in Florida at the end of May. His primary doc sent him for respiratory tests and called to say Frank had a "touch" of emphysema and prescribed Advair, but my insurance wont pay for it so he ended up with Symbacort which doesnt seem to be working. He was so bad last Sunday nite that I had to call an ambulance. The EMT said he didnt think it was COPD related, that he heard congestion in Frank's lungs and he felt it was dialysis related fluid build up. Frank had dialyzed the day before, and he normally either gains nothing or no more than 1 kilo between treatments. The EMT gave him nitroglycerine and symptoms went away. When we got to the ER, the nurse heard nothing in his lungs, the doctor heard nothing, and a chest xray was clear. His O2 saturation was perfect. He had little or no fluid built up anywhere. They sent him home. Now it seems like this is happening the day after every single dialysis session. He's good when he comes home, good all that day into the next, then starts getting shortness of breath early to late evening. Then he goes to dialysis the next day and he shows little to no weight gain. He was pretty bad tonite, but refused to go to ER. It eased off somewhat after I suggested he take a Lasix, but started to return a few hours later. So it seems to point toward fluid, but...no gain! He gets complimented all the time by the RN's and Dietician for having his fluid under such good control. So I am thoroughly mystified. Any thoughts/experiences? Thanks!

[boswife]

oh frankswife, We are going through what may be close to the same.  Bo (real name frank ) will breath 4 or 5 big breaths like he cant catch his breath, then back to normal.. At night though, he'll breath a few then just stop for a few seconds.  we were SUPPOSE to be at a sleep study tonight but he was feeling too bad to go.  Im sure for him it's partly apnia, but i dont know what is the prob then during the day.  He has been asking if he could get oxigen yet when he's tested, it's always perfect.  This is awful and i surly feel for you.  Bo is refusing the hospital as well and that puts so much on us.  Its gotton me so down, and so afraid, but i guess we have to just keep going.  I have strong faith that keeps me going but my strength is still faiding.  Im so sorry, and the only other thing i can think of is  hemoglobin.  Bo gets very short of breath when this is low.  He's great right now (10.8 ) but still does this weard breathing.  I so wish we were at that sleep study right now to have a possible fix.  I was spitten mad when he refused to go.  I have only been hurt up until now when these things happen, but tonight, well, i've stressed so much to get him there (i have to stay as they dont like that he is not in great health and want me there to help out.... ) and then now have to wait again for another apt.... ohhhhhhhhhhhhhhhhhhhhhhhh so sorry, didnt mean to go off on my own woes, but i guess you see, your not alone    I hope your night is ok, sending love and prayers, jill  aka boswife (whos also a frank,,hehe)

[lmunchkin]

John does this periodically.  Docs say everything looks fine.  Sometimes I think he will kick the bucket any moment, but he some how gets through it.  I think sometimes, we spouses just worry about everything.  Its our nature.
 
I know & understand, that sometimes the professionals get it wrong, but we can be wrong too.  Yea, I know, I can't beleive Im saying this!!! Lol.  Me wrong!!! Never....  I do know this about my John, if he gets so bad, HE will say to take him to ER.  If he can't breathe and he somehow dies (I know this sounds cold) it would just be his time.  Nothing we could have done to change it.  God will have called him/her home.

I do not want to lose my husband, but I know that We all will die. We are only alotted so much time.  It is not my decision, it is up to our Creator.

Yea, my husband does this from time to time.  Sometimes, at night, I will wake up and look to see if he is still breathing.  I thank God for every moment I have with him.  Frankswife, I know you are worried about Frank.  Docs have checked him out and say nothing is wrong, you just have to believe that they know.  It hard to trust their findings, but you can worry yourself sick over it too.  I don't want that for you or anyone else.  If he feels he is dying or something, he will let you know. Something was to take my breath, you better believe Im going to hospital.

Relax some and give yourself a break.  I know, "easier said than done" right!

Ill be praying for you ladies,
lmunchkin

[frankswife]

Well, the neph says it IS fluid. They lowered his dry weight a bit and so far, (fingers crossed) and his breathing has been much better. I know I'm not an MD but it just defies logic (my logic, anyway! ) that he has fluid overload when he goes into dialysis at the exact same weight as when he left dialysis 2 days earlier??? I'm going to stop overthinking this, and just be glad he feels better. Thanks for your replies.

[boswife]

speaking of 'fluid' my bo is going in tomorrow to get the fluid removed from his lungs.  Geesh!!  i get heck from the hospital saying he's too dry,so we leave a little fluid on, and get heck for not taking it off!.. he does have issues in that his blood pressures are quite low as his norm (100/40's now a days,,,, when kept super dry, he's 85/38's) Soooooooo, im glad he doesnt mind the 'draw' of fluid cause thats where he's wanting to store it..... It's not showing in his legs    balance balance   Glad franks feeling some better 

[frankswife]

Jill, hoping it goes well for Bo.

[lmunchkin]

Sure been think bout you guys.  Boswife, did they get rid of the fluid?  Gosh darn it, why can't things just be smooth for a change.  Its down right crazy!  Frankswife, my John has been doing a lot of "sneaking" as of late while Im at work. His labs were horrible.  He denied it at first, but the Labs told off on him.  Phos, K, Pth ect.... all leaped up quite a bit.

Ive had to keep him on machine a lot longer & threatened to add another day of D if he didn't get back to what he was doing. It is so very hard to watch them self-destruct.  But we all have to understand, its their body's, their lives, and utimately their choice!  We just do what we can do and that is all.  Im very concerned for all of our loved ones, but what can we do more that hasn't been done. (A little more patience- hey we try)

They are put on these machines, forced to do this.  Held to strict diet, most can't do the things they use to, this has to be HELL for them. I can just Imagine!  So let them get a little pleasure in life.  It is all they have. We just have to make it as pleasant as we can. Well, in my case, He probably wishes I wouldn't raise my voice.  I have really done well with that, but still have my moments!

I hope Frank & Bo are doing much better.  John has been extremely depressed, mostly because I work so much.  I can't spend very much time with him during the busy months. My work could use more of my time, but I will draw that line, when it comes to my family and my job.  My bosses know this, but these new folks just don't understand.  That's ok though!  I love them all, but whether they understand or not is really irrelevant.

We have decided to put a screen in porch on the back of our home.  That way John can go out and enjoy it while Im at work.  I want him to have this and He will.  Of course, I will enjoy it too, but John's time is limited, and I want him to be able to go outside not just when Iam with him, but when Iam not!  He deserves it.

Take care ladies & men.  May God give us all the Decernment we need to get us through these days of uncertainty, ALWAYS!

lmunchkin 

[billybags]

Having to have fluid taken off the lung is a pain in the ar**. Hubby has had 3 stints of this and then they decided to do a "talc job" on it. Apparently it is a surgical talc that is mixed up to a paste that they inject in the lung. First of all they drain the lung as much as they can and then inject this cement in. It dries. So far so good. He had it done about a year ago. It was done on a ward with just a local anaseptic.. I know there is a name for it, but I can not remember. It might be worth asking about. I know it wont last forever.

[boswife]

BB, whats the purpose of that cement stuff??  It seems weard but im sure theres a reason.  Just seems it would take up part of the lung so there would still be less function... Love to hear more..

and Imunch, well, yesterday good, today not so much.  And....... I need an attitude adjustment..lol, im not grumpy at all, no energy for that, just so down in the dumps i dont even like to post.  Im just one big downer   One good thing is we ARE going to go to sleep study tonight so mabie, just mabie, we'll find that what Bo needs is just a good night sleep   woldnt that be great!!  Heres hoppen/  that they will find some answers here..  I could use a good night myself   

oh, and FW, well, it ended up that 'we' had gotton the fluid off with dialysis.  Dr was impressed but then again, i was bummed that we didnt find our 'shortness of breath' answer in that he was just loaded with fluid.  lol  sooo, no needle, but on to the next tests   I do thank you for your best wishes, and pray that your frank is also doing ok, as well as YOU

Oh and about John being depressed, this is the hardest part of it all.  I have NEVER known bo, in nearly 50 years, to have this issue but......... as of late, i hardly recognize him.  It's awful hard   Im glad you have at least more 'grip' on that than i do.  I need inspiration so i can keep being of support for him during this time. 

Well, lots of love and prayers to all... Wish us luck tonight... I get (HA!) to stay w/him at the study... oh joy..lol  I was hoping for a peaceful all night sleep and it will be far from that for me.  All i really hope for is some answers sooooooooooooo, prayers appreciated