Will This Ever End

[willieandwinnie]

No G-Ma. Same GI doctor that told us months ago to get a feeding tube. We have the 2 best GI doctors on the East Coast. Mayo Clinic even recommends the ones we have. Gastroparesis  or lazy stomach is very difficult to treat and we have to keep trying different things because Len doesn't want anymore surgery or a feeding tube. We have been there and done that. I made chicken pot pies for dinner and it is the most he has had to eat since Saturday. One day at a time. 

[G-Ma]

They put a feeding tube in my upper chest when I was in hosp in Nov 2008, went to X Ray, put it in like a catheter and I went back to my room.  Can't they do something like this?  I could live with that, not many things but that was ok.  Surgeon said because of my Gastric By Pass and now kidney failure I might have to have this done at some point in the future due to the rearrangement of my intestines.  I do want something for pain before they do it again but that's all.

[paris]

I'll just keep praying.  We love you both 

[willieandwinnie]

They put a feeding tube in my upper chest when I was in hosp in Nov 2008, went to X Ray, put it in like a catheter and I went back to my room.  Can't they do something like this?  I could live with that, not many things but that was ok.  Surgeon said because of my Gastric By Pass and now kidney failure I might have to have this done at some point in the future due to the rearrangement of my intestines.  I do want something for pain before they do it again but that's all.

G-Ma, I asked the GI doctor about the upper chest feeding tube and he said that Len was not a candidate for it because he only has half of his small intestines, 1/3 of his large intestines and a little more then half his colon. The doctor told me that Len would only be able to get the small bowel feeding tube and Len said he is just not ready to do that. Len had one for about 6 months and also had TPN for almost 6 months also. It was scary to make sure that everything was done correctly so he wouldn't get any infection. He also had an open abdominal wound for 4 1/2 years. Like I said, we will just keep taking baby steps and pray that things will improve. 

[G-Ma]

I am praying for you and Len
Ann

[petey]

W&W -- This news makes me sad.  Poor Len!  Poor Kathy!  I know you must feel like it's one thing right after another (felt that way myself a time or two).  Hang in there.  I so wish I could do something to make things better for you both.  Know that you're in my heart and my thoughts.

[David13]

WW, I was just reading through this thread, and I am so sorry to hear of Len's troubles.  My thoughts are with you.   

[jessup]

Lots of love and prayers to you both
 

[rose1999]

Kathy I have problems of my own right now with Dad being very ill but I want you to know that you and Len are in my prayers although I don't have much time to post just now.  Sending Love and hugs for you both   

[del]

 

[2_DallasCowboys]

Dear W/W

I feel so very bad for you -  I want to send
you big  big 

Thinking and praying for you always

Anne

[kimcanada]

Thinking of you and sending good thoughts your way 

[thegrammalady]

 

[willieandwinnie]

Len's doctor just called us about Len's lab results from last Wednesday. They are going to reduce his prograf again because his numbers are way too high, white count was also low and his red count was too high. His creatinine was 0.7 and BUN was 15. The GP doctor said he talked to the Neph and Len is going on Monday the 26th and he said they are probaby going to lower his dose to 1mg a day. The doctor said that Len's labs were 12 hours exactly after his last dose and the numbers are in the dangerous high category, he also said that some of Len's stomach issues could be a result of this. This means we will have to get labs drawn more often but that is fine with me if lowering the dose helps his stomach. Lord, maybe all the prayers are being answered. 

[Romona]

  I hope it helps!

[monrein]

I'm really hoping this will yield some relief for poor Len's stomach.  At least that sounds a little hopeful, Kathy.   

[jessup]

 
more prayers and hugs coming

[pelagia]

Oh Kathy, I hope they get this figured out.  Why are they having such a problem getting his prograf straight?  I thought it was pretty straight forward in terms of the dosing.  How often are they measuring it?  Maybe he needs to go more often until they are sure that his level is where they think it should be. 

[Mizar]

It's very Hard to stand by and watch a Loved One, be Ill and feel like Our Hands our Tied in the Situation. Prayers to Len and to You.

[kellyt]

    My thoughts are with you and Len.

[paris]

A little ray of hope!  Like you said "baby steps".  I am still saying lots of prayers.   

[G-Ma]

 

[willieandwinnie]

I just had to let you guys know that since they reduced Len's Prograf to .5 at night, he has slept 2 nights in a row. The Neph called us this afternoon to see how he was feeling and was happy about the sleeping. We see him Monday and he wants labs next week and said that if the levels are still too high they will do away with the night dose all together. Part of that makes me happy and part of it scares the crap out of me. I have heard of some transplant folks that only take 1 immune suppression drug only once a week but this is Len and he has been through to much to have a rejection episode. I know I probably worry too much, but that's what I do best. 

[paris]

Today, we will just celebrate that Len got some sleep     My friend always tells me not to cross that bridge, because God isn't finished building it yet.       I am praying that this is the beginnng of better days for both of you.    

[petey]

...oh, good news, Kathy!  Good news!         


And, Paris is right -- we'll cross that bridge   when / if  we come to it.  Let's celebrate now.  I'm so happy for our Len; he's been through so much and deserves a break...and you do, too.

Made my day!