Hospital for 2.5 weeks albumin 1.4 - revision or ? Please give advice!

ok....slow down, it must be very scary, looks like you let yourself go, not paying attention to supplementation.  Most likely depending on your overall blood work albumin malnutrition and other vita/min they will suggest a revision, only because you have gone out so far.  you can do a couple things, not sure how many pills a day you take, I take 40+ a day due to other issues also.  you should try pancretic enzymes  immediately, sorry you have to take so many pills, but this is to make up for all the ones you have missed the last half year.  you are incorrect there is a way to test if they are working, blood work to see how you are absorbing what you are taking in.  It has taken you months to get to where you are, you cant expect your body to be fixed in a week.  you may need TPN temporarily to help you over the hump.  if you are consuming 140gm of protein a day and have been and your albumin is 1.4  that is very low, I would like to know your prealbumin results.  In march when your albumin was 2.2, you should have looked into it then, as DSers we can tank fast, what vitamins were "out of wack" and why would they tell you they were fine.  This is a DS WARNING, we have to be advocates, we have to watch our bloodwork results, we cant take it for granted that a DR even a specialist will do the right thing, sorry but true. You cant wait for someone to call you, to tell you etc, you have to have the blood work results in your possession , look at it, make sure it looks good, etc.   Taking in 140 gm of protein/day and you have been all along, and with a albumin that low, something is going on.  I dont know your cchannel lenght, but the shorter the higher % of possibility of more absorption issues.  Post the rest of your vit/min results I would be surprised if your PTH and vit D are normal.  You CAN get through this, but malnutrion secondary to intestional malabsorption is an uphill battle, you have to now build up what you have lost, and also not lose anymore. 

I would not at all consider a revision at this point (keep in mind I dont know your other blood work results)  I would all my creon like you are, 20 pills a day is nothing compared to revision, potential issues with that, then ? or regaining all your weight back etc, ask if TPN is temp for you.  but i think proper supplementation is the way to go.  Get Vit D3, Vit A injections if those are low, get iron infusion if  you are severly anemic.  Take 3K of ca citrate if you are low etc.   You should see a change in as little as 2 weeks for Ca (via PTH), and with your injectibles.   you will have to be diligent about blookwork, being diligent you will see your blood work start to trend to the favorable area, but that will take some time.  I hope you feel better real soon and are out of the hosptial and go home and start to recover and repair.

I agree. I don't take 40 pills a day but a revision was not what I needed either I just needed to be more vigilant with my diet and supplements.

I think a lot of the problem now is something that was brewing for quite awhile, but you didn't know. For ALL of us, it isn't enough to accept "you're labs are fine" from whoever answers the phone at some doc's office. anything in the normal range, even just barely, will get you that information. We all need to know the numbers and track them to see if a trend is developing. Something in the normal range but headed downward should be enough to concern us, and to get us talking to our docs about how to get that number going back in the right direction. And in your case, it sounds like things were not really fine even when you were told they were - all the more reason to demand to know the exact numbers each time we get labwork done.

But where does that leave you now? I agree with Airbender, granted neither of us can possibly know the whole situation, but there are things that can be done short of a revision, which is major surgery and carries both surgical risks and risk of weight regain. I realize that with pancreatic enzymes you need to take a lot of pills, but really, isn't that worth the effort to avoid major surgery?? And remember, this doesn't mean you would need to take these pills forever, this is hopefully temporary to get your protein levels back to normal and get you feeling better. And you could use protein supplements at the same time. You might - or might not - need a course of TPN to get things going in the right direction.

Bottom line, it's a lot easier to maintain a good protein level than it is to catch up after your level tanks, but it can be done. You must make your own decisions, but if it were me, I would try every nonsurgical approach before I would agree to surgery. I would also recommend contacting your DS surgeon, even though you are far away now, to see what advice he might offer, maybe even have him talk with your new docs if he is willing.

And while I don't mean in any way to make light of your present situation, keep in mind that there are people with damaged pancreases, or who have to have most or all of their pancreas removed for various reasons, who must take all those pancreatic enzymes multiple times per day every day for the rest of their lives. For you it's a temporary measure. You can do this.

Larra

`WOW I couldn't believe my eyes when I read this. You are on the same road I went down. I had the BPD-DS in 2001. I was  doing pretty good was feeling like crap and went in for blood tests.  My albumin was 1.9. Small cuts were turning into big red blotches. Do you understand what albumin does in your body. It keeps the blood in the inner layer of your skin. They told me this was life threatening so I went for an infusion. My body didn't react well to it and I had like Anaphalaxis, they called it Stevens Johnson syndrome. They had to intibate me and a drug induced coma for 3 weeks. When I came to my feet had begun to turn purple from my heart only working at 15%. They had to amputate both of my legs below the knee. They had told my wife not to expect me to make it. Well to make a long story short I'm still here 7 years later minus a pair of legs, open heart surgery Hep C.I almost did it again this year, for some reason my system changed and what I was taking in stopped working, I lost 34 lbs before I started seeking help. I didn't need a revision but I have to take in 200g of protein and 50g of complex carbs a day. Use the right protein Metagenics is the best one I have found. It needs to be a micro filtered whey protein isolate. Much better absorbed. I get mine from Vita Cost $35 for 2 lbs and if I mix 2 scoops with 2 cups of milk its 48g of protein and not filling. It's called Unipro Perfect Protein. http://weightlosssurgery.proboards.com/ is a great group to get help go to DS data. Let me know if you have any questions. This board is also very good, caring people on it, I just gave you the other because it is equally as good. If it sounded like I didn't appreciate the people here I didn't mean too just more help and you need all you can get. My recent issues my albumin got down to 3.5 when I started doing something. That was enough for me it had been staying about 4.5.

Oh I also forgot my Grandaughter is married to a USAF man stationed at Ft.Bliss. His job is one  that he works with Army infantry battalions so is always stationed at Army bases. They live in ElPaso and she works at Starbucks.

Also wanted to let you know you CAN do this. Get on the right track and stick to it. Keep an eye on your labs and if something starts to get out of whack do something right away don't wait. Listen to the people who have been successful and it will be a lifetime of vigilence.