Shelly Thank you so much. I took Jerry for blood tests today. He came walking out of the lab 45 minutes after he went in! I wish I would have gone in with him but the lab area is so small and I don't usually go in with him. He came out looking like the walking wounded! She tried 5 different places. She did get into the vain but Jerry said it just dripped out!!! She finally quit. She told Jerry she wasn't sure if there was enough blood for all the tests. The Dr. ordered a BMP, CBC and amonia! We won't know until tomorrow. I got Jerry to eat dinner but he's really weak. They tested his stool in the hospital and he has not vomited since he was in the hospital 2/22 to 2/24. Thats what is confusing me. Where is the blood going. The stool tests were negitive. I'm wondering if it could be in his stomach. I will keep you posted on the results tomorrow. Thank you so much.
JoAnn, is he short of breath? Sice the major problem with a low Hgb is lack of oxygen in the blood stream the patient often has real difficulty breathing. I don't want to scare you but just watch for it. Let me know how things turn out.
Hi Shelly Well I have been on the phone off and on all day with Vanderbilt over the blood tests. The local nurse was very concerned so we have all three been talking. Here is a breakdown.
Hemoglobin 2/24=9.7 2/27=8.8 3/12=8.6
Hematocrit 2/24=27.7 2/27=26 3/12=25.3
Amonia 2/24=45 3/12=164
Vanderbilt is making the call. Jerry takes 300 MG of Spironolactone every morning and they have decreased it to 200 MG every morning
He takes Bumetanide 3 mg every morning and they have decreased to 2 mg every morning!
They don't seem to be concerned about the blood. The nurse practicioner at Vanderbilt said they are used to the low blood. Much more so then other Dr.'s Also I have to take Jerry to get full labs on Monday!!! I was already packed to go to the hospital. His amonia level has never been that high. I freaked over that but I have also learned you have to go by how they act. One time his amonia was 84 and he was goofy. Today he is very sleepy but not goofy!. I've giving him a dose of lactalose every hour until he becomes a pooping machine. I was told by a nurse practioner that his amonia level can get used to being high and thats not good. I didn't get the other numbers from the nurse. I can get her to fax them to me. Then all I do is sit on the computer all night trying to educate myself about labs. That is the latest. I welcome any imput!!! There are times when I really think I might be going crazy. I guess its time to charge those batteries!!!!
I forgot to tell you he is NOT short of breath! Thank God. But no one can tell me yet where the blood is going? His stool is not dark!
Pink Grandma Its strange you should mention infection. I am now trying to find the time to really study his labs. I did see that the last time he was in the hospital his labs showed he had a bacterial infection of some kind. I suspected it when he was in the hospital and there were 10 bags hanging from the IV pole. We get more info from the nurses then the Doctors. I have a copy of the labs in the hospital. Also I have to order labs for him on Monday. Vandy wants CMP-PT-INR-CBC. I think they could possibly get a new MELD score from that. Don't you? Also do you know what I need to look at to get tumor markers. I think that is what they call it. Let me know. And thank all so much for the Incredible help. Its so much more then the Dr.'s. Also does anyone know how to calculate MELD. Diane gave me a link but I don't understand it. Thanks Again
Rainbeau --Where are you??? I worry when we don't hear from you.
JoAnn, hi sweetie. Yep it's time to recharge those batteries....you are not going crazy at all. You are just exasperated and tired. Labs are so tricky and sometime difficult to understand I know. If they are not concerned ablout his Hgb then who am I to interfere? I would be nuts with anxiety about the H&H but they are the experts so do whatever they say. I would still question them at what point they will transfuse him. I am keeping you both in my prayers. Keep me posted.
Joann, you teach me so much every day...today i packed an ER bag at a moments notice. the only thing i forgot was the toilet paper...they have awful toilet paper in the hospital..we had just finished up with the business meetings, and were settling down for a good dinner and movie when the phone rang. it was dr. mike(gastro dr.) who said the labs we did this morning were showing elevated potassium. (aside from the low blood pressure and high heart rate.) so much so that he wanted us to go to the ER. I said "What"...You gotta be kidding me. so off we go...6 hours later, he's admitted. i feel guilty not staying. but there was no way i could have. i'm exhaused.
tomorrow is our grandaughters birthday and i am making the potatoe casserole...maybe. i am off to catch some shuteye and hope to get back to mr. wonderful in the early a.m. he is already having bowel issues, i pray that tomorrows labs will show improvement.
Joann, we are thinking of you and jerry!! keep strong and stay safe.
love and light, rainbeau
Blue Blood is an old expression that was used in ancient times to define the pure blood lines in royal families. (That's why even the ancient Egyptian Pharohs married their own daughters). This went on for centuries and finally it was thought that we really did have blue blood while it was still in the body and only became red when exposed to the air (like when someone bled from a cut). Now we know that isn't true at all. The sheath of the veins are blue so when you look at a vein in your hand or arm or wherever it looks blue because it is blue but you see the vein not the blood. Blood in arteries is usually a darker red then blood in the veins because it has a high oxygen concentration. Yet we know that old blood actually is a blackish color and not the red we see all the time due to a lack of oxygen. Crazy isn't it?
Hi Rainbeau! I hate to tell you this but you are just getting started! I can't tell you how many times I have been to the ER. I want to say at least 10! We have had a few 6 hr ones also. A couple of times we were not even admitted. Potassium problems are really dangerous. I think its very dangerous to the heart! Shelly will be able to tell you more. Jerry was hospitalized a couple of times over electrolyte problems and they don't mess around with that. I think also Jerry had real low sodium. I remember an ER Dr. telling me about our second time there that I was really going to be in for it. He seemed to know more about liver problems then some of the others Dr.'s we got in the ER. I'm glad you went home and got some rest. I have always stayed with Jerry and have paid a big price for lack of sleep. He has always been so sick he couldn't get out of bed. Hospitals are always short of nurses so I stayed to help him. I can truthfully say for three months I slept in one of those horrible chairs just as much as I slept in our bed. My body will never be the same. I pray you don't have to go through all of that.
You are so funny about the toilet paper!!! That gave me a good chuckle!!! I do have to tell you as this horrible disease get worse your rear end is going to be the leasts of your problems. Probably not a good time to be joking around but if we don't get to laugh once and a while we will go crazy. Keep us posted on Mr Wonderful's progress!!!
Hi everyone, I just wanted to add that Pink Grandma and JoAnn are 100% correct. We NEED the laughter just like we need food and water. In fact some hospitals are promoting humor thru TV, DVD's and videos. The patients that had humor as part of their treatment healed quicker (post surgical patients). It is so easy to critisize medical personnel for laughing at times when others see no humor in things but as a nurse I can tell you it is part of our own healing. If we don't laugh we would be crying all the time-all we see is pain and heartache. The same applies for caregivers, you must find something to laugh at or you'll be so depressed and ill it will take double the time for your own recovery. Does this make sense to anyone? I guess the old saying "Laughter is the best medicine" is truer then we ever thought.
OK Rainbeau where are you???? I get concerned when we haven't heard from you. Its been a few days. How is Mr. Wonderful doing? I remember in the beginning I would get some sense of relief when Jerry was in the hospital because I knew they were taking good care of him. And I was always so scared that I would not do the right things. Now i'm just so sick of hospitals. And of course he wants to be home!!! I hope you are back home and in your own bed and not AFRAID!! That is such a horrible feeling to be afraid all the time. Just let us know that you are OK. If I had your address I would send you a case of GOOD T-PAPER! You gave me such a good laugh. Hope you are both safe and sound.
I agree about laughter being important. I worked for 8 yrs. in a case management office for kids with chronic and multiple illnesses. We joked around a lot ("sick" humor) to balance the many tears when a child died. In the spirit of humor, I bring you a good one I saw today:
MY LIVING WILL Last night my sister and I were sitting in the den and I said to her, 'I never want to live in a vegetative state, dependent on some machine and fluids from a bottle to keep me alive. That would be no quality of life at all, If that ever happens, just pull the plug.' So she got up, unplugged the computer, and threw out my wine.
Oh Connie you are the greatest! That made my day start out perfect! Thanks for the good laugh!!!
Rainbeau did you get a good laugh out of that!!!
Hello Everyone. What a crazy day. He's so sick and I was concerned about his blood among other things. First I got a call from the Case Manager for Blue Cross telling me he is turning Jerry over to the Transplant Case Manager. I started jumping up and down! He said he had been advised that Jerry is on the transplant list. After I was done getting hysterical. I hung up the phone and got a call from Vanderbilt who I had left a message for earlier about Jerry's blood work yesterday! Matt (liver dr. NP) asked me how I was and I started to tell him what Blue Cross had just told me. He said he had been talking to Blue Cross all day and they turned Jerry down. Talk about letting the air out of my balloon! After talking to Matt for 30 minutes about the list and Jerry's codition. I hung up and hear Jerry's cell ringing. It was the new case manager telling me I will be getting a packet from him and he told me Jerry was now on the list. By this time I was beginning to feel like a YoYo! So I hung up called Matt back left him a message he called me back and said after he hung up from talking to me the finance counselor at Vanderbilt call him and told him Blue Cross had changed their mind! He said it reminded him of a circus. I wanted to say like the circus you at Vanderbilt had put us through!! Jerry is on the list! Crazy isn't it. I was so happy I almost peed my pants! He's really sick right now. Even though his MELD score went down to 13. Matt said its good he listed because he really isn't consistant. Matt has decided to put him on an antibiotic. I was so happy to hear that. It seems that his ammonia level is high that is why he is shaking so bad and can't stay awake. The vomiting has gotten worse even since I have taked to Matt. Anyway I just had to share with you all he is finally listed!!! I love you all and thank you so much for all your prayers I just know that helped a whole bunch!!