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Mon, Feb 18 10:50pm · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

Sacker, Hi, Wow I totally get your frustration and anger, there should be a clearinghouse, somewhere folks suffering from PICUS can get answers on nutrition and oral supplements, because just upping calories will put on fat not functional muscle. After an ICU stay especially on a respirator muscles go into catabolic state and from what Ive read can continue in that state. And physical rehab, athletes have resources to measure their lean muscles and track their gains. Why are we not prescribed supplements geared to the needs of PICUS people, modern strength and endurance training like athletes have? My husband is 70 but before viral pneumonia he was very active and vital, now he doesn’t want people to see him in his weakened state. He has made improvements but they seem slow and he’s scared he will never get back close to what he has lost. The people on this forum are awesome and give moral support, and have given me great pointers and insights into what my husband is going through. I know we are not the only ones struggling. We have an appointment Friday with PICS Recovery Clinic at Vanderbilt I am praying they have answers and the physiologist is someone my husband feels comfortable confiding in. I’m sorry if I rambled but you were the first person that alluded to frustration and anger, I felt despite our almost 30 years difference in ages I get it.

Thu, Feb 14 10:54am · Confused About Diet for Stage 3 or 4 Chronic Kidney Disease (CKD) in Kidney & Bladder

Kamama94, my husband has had CKD for 20 years and it is a struggle to keep up with current nutrition guidelines. We were also told to stay away from whole grain breads, sourdough bread was recommended by our nutritionist and that is where we are now, spinach is ok raw but not cooked, sweet potatoes and Irish potatoes are better if leeched (boiling then soak, pour water off and repeat) my husband loves potatoes. We have switched to light salt for years and seem to be working. Our problem now he was in ICU and has lost a good bit of lean body mass, to regain muscle he has to up his protien intake as well as exercise to regain his LBM and strength, I’m wondering if vegan protein supplement would be better than the whey protein. We have increased his meat consumption also

Tue, Feb 12 11:37am · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

Annie, one of the problems I’m having with my husband is nutrition. He has CKD stage 3 so e have to watch his protein, potassium, phosphorus and sodium intake, he lost 23 lbs and a lot of that was lean muscle as I’ve read happens to a lot of folks. The problem is not to just gain weight to get stronger but LBM is so important not to just gain back fat. I have read plant protein is better for folks with CKD but I’m not sure if that’s true and several articles I’ve read suggest 3,000 to 5,000 calories a day to regain strength and endurance, with great percentage being protein and healthy fats. Most of the discharged ICU patients are sent to inpatient rehabs and later home based rehab programs but we don’t get guidance about nutrition and most primary care doctors are not familar with the dietary needs of PICUS folks. I’m sure there are others with specific dietary needs, diabetics and others I feel is a need for after support

Fri, Feb 8 2:50pm · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@andreab, I cant tell you what a blessing this group has been to me. The advice and suggestions for sure, but late at night when the fear comes back, that there will be another set back to send us back into another nightmare, I reread the posts and here is proof things do get better. We are doing well and finding our way, i feel hopeful

Wed, Feb 6 1:24pm · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

Muriel, your reply was exactly what I needed to hear, especially just answering his questions as they come up but not going into depth he has not asked for. We just started home health and I was a bit disappointed that they don’t seem to be on the same level we were at at inpatient rehab, I am so glad you mentioned walking, too. We do have an appointment with Post ICU Recovery Clinic on the 23 and it is supposed to include physical rehab, nutrition and emotional help for myself as well as my husband. Yesterday was a down day and it’s hard not to be disenhearted but I just had to remember how blessed I am and give thanks for my gifts I am being given. You all are so special to take your time to ease our way. Than you

Mon, Feb 4 8:36pm · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

Rosemary, thank you for your insight and perspective, I haven’t thought about writing it down. I might do that when I get some distance from the horror of it all, especially if it will be of help to my husband. Thank you for sharing

Sun, Feb 3 2:58pm · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

Hi Muriel, than you so much for taking time from your day to reach out to me. I guess the most important thing I have to ask you, was there one important thing that stands out that was the greatest help to you? I am focusing right now on nutrition, relaxing and exercise and plenty of rest. We are talking through the month he spent in the hospital and I’m reliving the days we spent there, at first I didn’t want to go back to that time. It was like walking through my personal horror movie. He finally got through to me his need to understand what happened to him, for him he woke up in a Critical Pulmonary care Hospital with a trach in his throat, not able to move or speak. I have my doubts still if I’m doing the right thing. I guess I’m asking if you had this need to understand what happened to you? Thank you for any advice or insight you can share with me.

Sun, Feb 3 2:45pm · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

Colleen, Hi, thank you for your response and for pointing me to resources I might find help to make this journey a little easier. I guess my main preoccupation would be how to best help him gain lean muscle and strength back, when I read the best way to do this, oral supplements with protein are recommended and his CKD calls for limited amounts of protein in his diet. We are home now and more relaxed and in a better frame of mind but I still get scared that we will experience another set back, there were so many in the hospital. I find it helps that I’m able to focus on regular household chores and I’m not just sitting there watching him 24/7.