Joe's going back into the hospital

[skimomck]

Nancy, We're keeping you and Joe in our prayers. Take care of yourself and know we are thinking about you.

 

[catwoman]

Nancy:
I checked posts about Joe last night, didn't post a note because I was hoping to see something from you in the meantime.
Praying everything's going OK, or as well as can be expected.

 

[Susan BAV]

Nancy and Joe -

Hoping for the best for you both.

 

[Nancy]

All of the tests have been done, and there is no bad news from the tests and some modest improvement in several areas. Nothing definitive has shown up to explain the intractable CHF. They were going to send him home, but overnight he gained 3 pounds. He's up 8 pounds total and all in the stomach area.

They had to take him off all diuretics for a while because his creatinine was too high. So of course that made his CHF very unstable. They are trying various combinations of diuretics to see if something will work better than Lasix. He was on 320mg per day, and it wasn't working at all.

So they are trying Aldactone, Bumex, they tried Demedex, but that was useless. They're starting him back again on low dosages and keeping an eye on the creatinine.

So I don't have a clue when he'll be home. I certainly don't want him to come home in unstable condition, he'll be right back in in two days.

Oh--and here's the fun part--I had to have a heavy duty discussion with the dietician. His doctor ordered a 500mg diet for him. The kitchen couldn't or wouldn't do it, and sent a 2000mg instead. I finally got them to see if they could do whatever they could to keep it lower. We settled on a 1000mg diet. But as you can see from the above, it's not low enough. They ended up sending him piles of cooked green beans and other vegetables. I had to bring some foods from home.

This is a hospital that does heart surgeries, heart transplants, has a CHF program and does kidney transplants. It is affiliated with a medical college which teaches dietary science.

They make their patients go on low sodium diets when they get home, but they cannot even try to accommodate patients who need a low sodium diet when they are incarcerated.

Duh-duh and duh!!!

 

[Granbonny]

Nancy

Nancy

So glad to see you posting about Joe..We have been worried....Glad to know, tests were good..Keep on top of them about that low sodium diet... Keep taking him your good cooking and pitch the hospital food. Hate to know he has to stay in over the long Holiday weekend..Scary, with most doctors gone.. Let us know more news...and you rest up, too..Bonnie

 

[KathyH]

Nancy, it is a bit of a relief to find out the tests were ok with Joe's heart. That's step one in the right direction. Sounds like trying the Aldactone and Bumex are a good plan too.
That is something else about the diet! Maybe you can give them a few pointers with all the experience you have had.
I will continue to send good thoughts your way and hope they figure out the right combination of meds for Joe.
Kathy H

 

[Phyllis]

So glad the test results were positive. I hope they can get everything else straightened out and Joe is home with you again soon- we all know he is in the "best" hands when he is home with you!

 

[Guest]

Oh--and here's the fun part--I had to have a heavy duty discussion with the dietician. His doctor ordered a 500mg diet for him. The kitchen couldn't or wouldn't do it, and sent a 2000mg instead. I finally got them to see if they could do whatever they could to keep it lower. We settled on a 1000mg diet. But as you can see from the above, it's not low enough. They ended up sending him piles of cooked green beans and other vegetables. I had to bring some foods from home.

This is a hospital that does heart surgeries, heart transplants, has a CHF program and does kidney transplants. It is affiliated with a medical college which teaches dietary science.

They make their patients go on low sodium diets when they get home, but they cannot even try to accommodate patients who need a low sodium diet when they are incarcerated.

Heh....the ultimate in the "irony rocks" category....

Sorry about these issues, but glad that the tests gave no bad news.

Thoughts/prayers still coming your way.

 

[surfsparky]

Hi Nancy,
We're adding ourselves to your list of prayer supporters. You've helped all of us so much (more than you know) that it's an honour to be able to support you.
Praying and hoping that they can find a medication combination that works perfectly for Joe,
Regards,
Yolanda & Chris

 

[Sherry]

What a crock that the hospital isn't catering to his low-sodium needs, which is truly an irony given the specialty areas of the facility. Nancy, you've always amazed me at what an awesome advocate you are for Joe's health. He is so unbelievably lucky to have you.

 

[KimC]

Nancy,

I had a similar experience while hospitalized in the "leading" cardiac ward of our state. They served me a Thanksgiving feast of salty turkey, gravy, etc., and I woke up the next day with feet swelled up like pumpkins.

Best,

 

[Marguerite53]

wishing continued good news

wishing continued good news

Nancy. You and Joe have been through so much. You would think that a medical facility of that caliber would be able to deliver low sodium meals!! I have learned so much from you -- most especially about resilience. The two of you are quite something!!

Thank you for your grace, by example. Hang in there. Good luck!!

Marguerite

 

[Marge]

Nancy, I'm hoping Joe gets to go home soon, but stabilized! As you say, you don't want him going back & forth. Thank you for the updates.

The difficulty of getting low sodium diets in hospitals puzzles me. I am not on the kind of low sodium diet Joe is on, but you would think you would at least be able to get the standard 2000 mg or less that the Heart Association recommends. But when I had my valve repair, everything they brought me was just loaded with salt!!! (Plus extra little packets on the tray, of course.) I wasn't eating very much while I was in the hospital anyway (the food was too awful), maybe that is why I didn't have any fluid retention problems while I was there, and I was only there only four days. So we never raised the issue with the hospital, but it still strikes me as wierd. This was an all-cardiac ward (no transplant patients but lots of bypasses).

 

[Nancy]

Well, they could provide a 2000mg sodium diet. If Joe were to eat that he would be in Stage 4 CHF within a week. He really, really needs to be on 500mg or less. They don't even know what is in the 2000mg sodium diet. They brought it to Joe a couple of times before I caught it, since I can only see him during restricted times. Along with the 2000mg diet they also provided packages of salt, each one about a half teaspoon. Joe's knows enough not to eat any salt. But I bet others would gobble it up.

I believe we were seeing "kitchen revenge" today as they tried to provide a low sodium diet. For lunch, and I'm not exaggerating, he had one ice cream scoop of mashed potatoes with nothing on them, not even no sodium margarine or paprika or parsley, and an ice cream scoop of white rice with nothing on it, and a dry hamburger wrapped up in some tarnished tinfoil. The side dish was one teasoon and a half of coleslaw, no kidding.

For dinner, he received the exact same meal. Maybe it is because it's a holiday weekend, but it's not a holiday for the patients.

Fortunately I brought him a large lunch. I made him some sauteed beef and peppers in Mr. Spice's Thai Peanut Sauce (no sodium), over a brown rice combo, with a few raisins and tiny tomatoes and some garden chives and cut asparagus.

Tomorrow, I'm also bringing him a good lunch. He also has some snack foods in the fridge on the floor he's on.

You see why I'm always harping on everyone to have someone there to look out for you!

 

[Karlynn]

You see why I'm always harping on everyone to have someone there to look out for you!

And they'd probably all be scratching their heads thinking "We just can't figure out why he's getting worse."

 

[hensylee]

hOSPITALS can be just awful - and they cover their a** by lying to us when they are in the wrong. as you say DUH - duh & duh! Do they really think we buy their B.S.!

Glad to know Joe's heart is perkin along, Nancy. And that you are there to keep track. Rest when you can. Don't want you getting sick again.

Best to Joe. Tell him we are all keeping track and concerned.

 

[Nan]

Nancy, WOW, what a situation! And what a tremendous advocate and caregiver you are. And how scary that the RD's who I assume plan the menus, especially for patients in Joe's situation, can't do better than that!

I think you ought to be teaching at a medical school or nutrition school somewhere. They clearly need your help. As do we all. At the very least they should be begging you to write an article or two or more for one of their journals.

Now that I have vented, I hope that Joe is improving, and as you can see from everyone's messages, so is everyone else. We are all thinking of both of you.

Please give Joe my best.

 

[ccrawford]

Nancy and Joe - Sorry as heck you guys are going thru this routine again and please know we are wishing you luck and a fast recovery. Chris

 

[Nancy]

While in the hospital, Joe gained about 9 or 10 pounds of fluid, as they took him off diuretics to get his kidneys out of failure. He was so uncomfortable. Finally, he was able to shed 5 pounds of that last night with IV Lasix, Aldactone and Zaroxolyn. Maybe they should have thrown in some TNT as well. And magically, his creatinine went down. They were understandably worried about that getting high again. Joe just doesn't do things the way he's supposed to. Down is up and up is down.

There was some talk of a TEE. I was hoping that it would happen. Not too sure about whether it will or not. I know he has a severely leaking tricuspid and has had for a long time. But I get the feeling that no one wants to touch him surgically with a ten foot pole. He's had a total of 5 thoracic surgeries, 3 hearts and two lungs. He's major high risk.

Up until February he has been very stable with his fluid retention, and his cardiologist feels that it can once again be brought under control and can be managed medically rather than surgically.

I do believe that from now on anything more than a three pound gain at any time will be the absolute limit. It is just too hard to get rid of when it goes over that. It won't budge at all.

His heart is squeezing well, and all his pressures have shown improvement. Have to keep that boy on a very short leash.

I still don't know when he's coming home, but it probably won't be too long.

He has his impish sense of humor back, especially today when they were doing the "skin integrity" check, if ya'll know what that is. He had lots of fun with that one.

 

[bvdr]

I'll feel better when Joe is home again and under expert care .
Thanks for the report, Nancy. Are you exhausted?