exhaused

Hi JoAnn. I know that you are at your wits end right now. The Hgb or hemoglobin level normally for men is 14-18 gm/dl . When it is low then they are losing the blood from somewhere and it is usually in the stool. Are his stools black? Is there any bright red stools with obvious blood? If you don't know for sure ask him to let you see his next stool. On the otherhand there is the possibility that he has a slow leakage of blood in the stool that he would not necessarily notice. Over time his hemoglobin would drop to low levels. If he is vomiting blood then this is another story. If I explain a little about what hemoglobin does it may explain why he is dragging around. Hgb is a protein that carries oxygen throughout the body. When the Hgb is low then the person doesn't get enough oxygen to the brain. When that happens they become lethargic, confused, exremely tired, disinterested in everything, extemely weak, bruises easily,and if it continues it will cause death. They usually transfuse them with a Hgb that low on an emergent basis. Hospitalization is absolute (I have never seen anyone not be hospitalized with an Hgb that low).When they get the transfusions there is an immediate difference in energy and overall well being. I have seen it occur with the completion of the first unit of blood. I hope this helps a little.

 Shelly

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

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!!!!

JoAnn 

Yes JoAnn I think it's time. I really feel for you . Trying to make sense of all the senseless things going on is really stressful. The same thing happened with my husband. Once when his ammonia levels were sky high he was fine, and then when they were at about 60 he was as goofy as a jaybird. But what I found out is that he had an infection and that made him goofy it wasn't the ammonia levels that time. Hang in there...thoughts and prayers.

Right HERE!!! Been here most of the night just reading about what is going on with you and Jerry. And trying to find words...words to say just how sorry i am that You two are having such a challenging time right now. Thank God for Shelly and Pink with their knowledge and guidance has you confront this little curve ball. Just when things seem to be stablized and you can relax for bit, you get a low ball thrown at you...darn hgb and hcb!! It amazes me that you have such a grip on these lab counts. You truly are amazing...Have I mentioned how lucky Jerry is to have you!?!

I got a little curve ball too! nothing has tricky as your scenario. Mr wonderful and I had a 10:00 a.m. neurologist appt. yesterday. finally got home at 7:00. His blood pressure was 72/56. apparently, he doesn't need the high blood pressure medicine since he has stopped drinking. ( and i was suppose to know this) anywho, he spent the afternoon attached to an IV trying to get it back up. He also got his first in a weekly series of B-12 shots. we finally got it to 90/60 and they let us go home with an appt with his primary physician first thing this morning. so, after the 5th time to the drug store this week, I am now the proud owner of a blood pressure test machine. tonight its back down to 83/58. gonna take a week to deplete the benicar in his system...also found out he lost 30 pounds in 6 weeks. have also had a little incontinence...lovely...

anywho, the neurologist finally said the H word to me...hepatitis...and mr. wonderful has neuropathy, but the back MRI was inconclusive, so we are doing a brain MRI on monday...blood work tomorrow morning and then an afternoon of business meetings at the house. finally getting the the orthopedic dr. for an xray on his clavicle on monday, after the brain MRI, then a spinal tap in 2 weeks. start physical therapy next week, and am researching nutritionist in the area. stumbled across some of the alternative medicine websites and got caught up in the "promising techniques" they recommend. it all can be such information overload.

KEEP UP THE GREAT WORK!! Your doing a tremendous job! not only for Jerry, but for the others who can learn from your strength and courage...This crap is definitely not for sissy's.!! stay strong!! we are all pulling for you and Jerry!

but also, find some time to recharge!

love and light, rainbeau

Hello JoAnn, After I learned about infections and encephalopy (SP) sorry it's too early. Anyways it got to the point when ever I noticed his confusion coming on I checked his temperature. I couldn't make a whole lot of sense out of his lab work either. But if he had a temp I knew that there was a good chance of an infection. His legs would swell and turn reddish purplish too. So if his legs did that and he had a fever I would call he doc for a antibiotic. They would just call the pharmacy and I wouldn't have to take him in every single time. Take care and hang in there. Thoughts and prayers........

Rainbeau-I love your coment about the curve ball.  My dear you need to get a good catchers mitt because your going to get a lot of those curve balls!!!  You will do fine your already a head of the game.  I love your remark "I was suppose to know that".  I say that to myself all the time!!!

Shelly I will ask them that question its a good one.  I have to take him to do blood work on Monday!  I am also going to get a copy so I can set here in the middle of the night and study them.

Dansbrother-Yes his legs are purple and feet at times!  No one has every commented on that!  I just figured it was poor circulation.  If he elevates them it goes away in his feet but not legs.  I will make a note to ask the Dr.

Connie-Thank you so much I now have more to research!

Pink Grandma What on earth are doing up so early????  That is so interesting you should mention an infection!  Every time Jerry is on an antibiotic he feels so much better!  I have been saying that for months.  He does not ever get a fever.  His legs have never swelled but are that purple color.  I noticed by his last blood test when he was in the hospital he had an infection.  He never had a fever then.  I think he has some kind of cronic infection.  He gets better for a while then it gets him down.  They drained him today and its getting harder and harder to find a vein for his albumin.  I hope he does OK over the week end!! 

Thank you all so much for your quick response!!  You are all such a big help.  Sometimes I wish we could all be in a room together so I could hug you.  I will keep you posted.

JoAnn

 

Dansbrother, I was going to comment on that "blue blood" remark, but don't have my medical textbook nearby to refer to. The myth is probably from the fact that veins appear blue. Also, there is oxygenated and unoxygenated blood in the body. Oxygenated goes out from the heart (forget which chamber) and the unoxygenated flows back to the heart to become oxygenated again. That's a really simplistic explanation. Shelly can explain better, I'm sure. ;)

Connie

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!!!

JoAnn

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.

 Hugs, Shelly

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.

 

Hugs,

Connie

Oh Connie you are the greatest!  That made my day start out perfect! Thanks for the good laugh!!!

JoAnn

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!!

JoAnn