possible ER visit/stay! What to do about needed CAPD

[marlinfshr]

The past several days I have been short of breath. Actually quite winded when bending down and when walking no farther then what a parking lot might involve. Typically I can walk several miles without an issue. Weird, I have been fishing an offshore tournament this week and while on the boat I have been fine, even standing most of the day. We have one more day to fish which will be tomorrow. My breathing has gotten better but I still have a lingering cough. It is almost as if I have fluid build up in my lungs.

I don't retain any fluid (at least didn't feel I did up to this point) but am thinking perhaps all the extra liquid I have been drinking on 12+ hour days on the water has possibly overloaded my weak kidneys and with a little accumulation each day it finally built up to an amount I notice. I have been going fishing quite regularly these past couple of weeks. Today and last night I had time and did a couple extra cycles with the green to try to pull excess fluid. I normally do my prescribed 2 times a day yellow/green with 2 to 3 hour dwells and my numbers have been great.

other then the shortness of breath/coughing I feel fine.

So, I think tomorrow evening when we come in, if I haven't improved any more I will probably go to the ER at my local hospital. Due to a slight irregularity in my heartbeat, a heart attack last year with 3 stents involved I think I can make a safe bet that they will want to do a few more tests then normal and I expect at least 2 nights in the hospital. Just a guess based on my history.

So, what do I do about my CAPD? Is it normal for hospitals to have everything there? Or should I just put 4 bags in a duffle bag along with my other PD supplies and carriy it into the ER with me? I have been on CAPD for a year now and this will be my first hospital visit. I'm also worried (among other things of course) that they will just automatically put a catheter in my groin and make me do hemo.

Thanks for any reply's!

[noahvale]

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[Deanne]

When I was on PD, my center was very clear about it. If I ever had to go to the hospital, I was to take supplies with me. It might be a good idea to call your dialysis center and tell them which hospital you'll likely go to.

I hope you feel better soon!

[Charlie B53]

I've had the same concerns as to whether the local hospital and also the VA hospital I use would have PD supplies.  I spent a lot of time of the phone calling both to find out that they DO and it would not be a problem if I needed admission.

Like you said yourself, it wouldn't hurt to toss a few bags and supplies in a duffle and take it with you.  Just to be sure.

I keep a couple ofo bags and supplies in my trucj.  Just in case I am unexpectedly unable to get back home in time for a change.


As to your shortness of breath, get yourself in and get it checked out.  This is potentially a very srious thing.  You should NOT wait.

Have you pressed your thumb against the front of your shin bone and held it for 15 seconds, to see if it leaves a 'dimple' indicating fluid accumulation?

You can still have fluid accumulate in the lungs and/or within the heart sac without swelling of the legs.  Either can be fatal when symptoms are ignored for too long.

I highly recommend you can your D Dr and get in to be seen immediately.  If he is not available, call your PD Nurse.  She will most likely get you in or tell you to immediately go to the ER.

[marlinfshr]

Thanks for the advise. I am going into the hospital in a few minutes. I am still getting winded, especially upon bending down. Overall, though, I feel great. apatite, energy is all good. I can even breath normal while resting but still have a lingering cough. But just walking a few yards or bending over to tie my shoes takes the wind out of me. Yesterday, I stood up all day on the boat and was able to get to a rod in time a few steps away very quickly. I could rig fine, but just putting dock lines on the boat wiped me out! I think with my history I better check this out as I have a little time.

Thanks.

[Charlie B53]

Did they admit you?

Hoping to see an update and that you are feeling better soon.

[marlinfshr]

Well, I checked in and as guessed due to history they kept me for a bunch of tests. As far as my dialysis, at first they were pretty adament about not letting me do my own. I had to use their supplies and the nurse had to do it. Nothing like I was taught. Posible mask, open close doors, going in and out, not knowing how to use the supplies (they use fresinius), leaving the door open while trying to figure out which ones the cap, more people coming in asking questions. I'd be really surprised if I don't pick up perotonitis. They finally listened to my complaining and one of the other nephrogists stated that whats working for me at home will work here as well. He told them to just let me do my thing.

As far as the out of breath and reason for checking in. 3 weeks ago I had an echocardiagam. Which came back good. However, my stress test this weekend showed issues as did another echocardiagram. I also had some fluid in my lungs which seems to be cardiac related and not a fluid overload. They did a catheterization yesterday and found blockage which can't be cleared with a stent. So it looks like I'll be having a bypass some time next week.

I hope I'll still be able to get a transplant after having heart bypass surgery.

[Charlie B53]

Unable to stent a blockage isn't a real good thing, but it can be repaired with a by-pass.  I had a triple, never really had any symptoms other than general tiredness.  They told me the major blockage like I had in the backsideof the heart  is referred to as a 'Widow-maker', NOT survivable.  My first attack would have been my last.

So we both are very lucky to have found out and dealt with it in time.

Glad you went in.  Stay with the plan and keep us updated.  You should do fine.

[Simon Dog]

Unable to stent a blockage isn't a real good thing, but it can be repaired with a by-pass.  I had a triple, never really had any symptoms other than general tiredness.  They told me the major blockage like I had in the backsideof the heart  is referred to as a 'Widow-maker', NOT survivable.  My first attack would have been my last.

I suspect they are referring to the left main.  Not everyone who has an MI due to a blockage in this artery dies, but it is considered the most dangerous location.  My father had his MI 30 years ago with 95% left main occlusion; fixed by quad bypass; still alive today, but he gets stents about as regularly as most of us get our teeth cleaned.    One cardiologist once told me "stents are like potato chips".

[amanda100wilson]

If you knew that what they were doing was wrong, why did you allow them to do it?  Next time, refuse to allow then to do it , and get adamant that you will.

[PrimeTimer]

Well, I checked in and as guessed due to history they kept me for a bunch of tests. As far as my dialysis, at first they were pretty adament about not letting me do my own. I had to use their supplies and the nurse had to do it. Nothing like I was taught. Posible mask, open close doors, going in and out, not knowing how to use the supplies (they use fresinius), leaving the door open while trying to figure out which ones the cap, more people coming in asking questions. I'd be really surprised if I don't pick up perotonitis. They finally listened to my complaining and one of the other nephrogists stated that whats working for me at home will work here as well. He told them to just let me do my thing.

As far as the out of breath and reason for checking in. 3 weeks ago I had an echocardiagam. Which came back good. However, my stress test this weekend showed issues as did another echocardiagram. I also had some fluid in my lungs which seems to be cardiac related and not a fluid overload. They did a catheterization yesterday and found blockage which can't be cleared with a stent. So it looks like I'll be having a bypass some time next week.

I hope I'll still be able to get a transplant after having heart bypass surgery.

marlinfsher: Here's to a speedy recovery!! Sorry you are going thru so much, facing bypass surgery has got to be pretty stressful and scary! I could not imagine it! I don't know if this will help but, I've personally known two people who had bypass surgery and both said that upon waking in their hospital room after surgery, they felt an immediate difference and felt a whole lot better, I suppose because their blood and oxygen were circulating better. Of course, they had a long recovery (mostly from the surgery and surgical site/wound itself and had to be careful with doing things) but both were somewhat active after getting home from the hospital. You seem a very active person, very athletic with a positive attitude and so that is probably a huge advantage you have going into this. The two I was speaking of are not athletic and are much older men. Sending positive thoughts and well wishes your way....PT

[Simon Dog]

They finally listened to my complaining and one of the other nephrogists stated that whats working for me at home will work here as well. He told them to just let me do my thing.

If they refuse to let you "do your thing" and continue the self treatment protocol at home, a reasonable reaction is to demand they page the on call nephrologist and let you speak to him/her.

[marlinfshr]

Well, just got back from my bypass. I was in the hospital for 13days. Surprisingly they had me doing PD dialysis the next day which I didn't like---after a slow day of hemo. Unfortunately I couldn't continue with the PD. With all the buildup after surgery did they really think they would be able to have me handle another 2 liters in my abdomen? Sometimes I think we're dealing with idiots. Of course the nurses, who had no clue ( in their defense they may do one exchange once a year) had to administer it because i just had a quad bypass.

Fast forward a few days and I still wasn't moving anything so the DR though up a brainstorm of putting me on hemo for a few days. That's actually what I wanted and needed-- something to remove some of my swelling so my numbers would come down and I would start moving things.

Felt much better though it cost me a few more days in the hospital as they wouldn't release me with my temporary catheter in my neck (non-tunneleled) Well at least the creatinine came down below 4 again right after treatment but would creep back up.

That has gone as high as 11.5 after surgery and down as low as 2.? after my first 24hr hemo. On CAPD for the past year it has held at 5.3 to 6.5 and was as high as 8.0 after my PD catheter was installed last August. It seems to be in the 5/6 range which has been normal for me on PD. However, I have only made a trickling of urine which is worrying me. Before I went in I had absolutely no fluid retention but am now scarred to drink anything. Of course I need to drink to pee.

Hopefully if I start drinking, the fluids will be removed in my PD exchanges if I don't make urine, or perhaps guzzling a 2 liter jug of water while standing in the shower might help get things moving.

Hopefully, my what were somewhat working kineys didn't die. Perhaps still in shock.

Another thing I'm slightly worried about is how this will now affect the transplant list and cross match when my time comes as I also received 3 units of blood.

But at least I'm home ` well in my parents house for a few days to get me transitioned.

[PrimeTimer]

   Wow! Thirteen days as a hostage in a hospital and you got to go home! Hope you feel better and back on the road to life. It is always a relief to leave those places and get home. You made it! 

[marlinfshr]

Unable to stent a blockage isn't a real good thing, but it can be repaired with a by-pass.  I had a triple, never really had any symptoms other than general tiredness.  They told me the major blockage like I had in the backsideof the heart  is referred to as a 'Widow-maker', NOT survivable.  My first attack would have been my last.

That's the one it was. They were able to bypass it with an actual artery from the left side of my chest. The other was bypassed from a vein in my leg. I was starting to feel pain in my chest and arms as well as numbness in my hands while in the prep room and when I mentioned that the surgeon just motioned for them to take me in at that moment. He said that something was going on and the heart didn't look in good condition upon start up but after he was finished he was really happy with the results and could tell improvement. I guess I made it in just in time. Don't think I could have added a minute if I needed!

[Simon Dog]

The use of the internal mammary artery for a bypass has become pretty much standard in recent years, since is tends to have much greater patency than grafts of the saphenous vein.