Will This Ever End

[willieandwinnie]

Hi Everyone, I need a good old fashion SCREAM.... I took Len to the GI doctor this morning and he is suggesting a small bowel feeding tube to bypass Len's stomach. Oh my God, I have been there and done that  As many of you know, Len has had stomach problems since transplant last September and was finally diagnosed with Gastroparesis. The GI doctor told us that the immune suppression drugs cause many stomach problems and he gave me a list of things to look up, one of them is a pacemaker placed in the stomach and some medication that is only available through Canada. They are scheduling Len for a stomach emptying study and another Endoscope. Poor Len, he is sick of doctors and sick of being sick. They have given me morphine to administer at home and we will discuss IV fluids for home as a backup. I think I'll go take a shower so I can have a good cry. Len actually was doing better on dialysis then he is with transplant. This is just crazy and heartbreaking to me. 

[LightLizard]

this just bites, but you need to remember that you are not alone in this frustrating mess.
its amazing how similar tratements can have such a widely different effects on different people, and i think that this fact
also frustrates the medical professionals that have to make these decisions every day.
is going back on dialysis an option?

[thegrammalady]

  here's a big hug, a good cry may be just what you need. it usually doesn't solve any problems but you usually feel a whole lot better. remember we love you 

[paul.karen]

:-(

Im sorry this is such sad news to read.
I wish i knew what to say.  
My prayers going out to you both...
P&K

[xtrememoosetrax]

So sorry to hear this, w&w. I know you guys have been through the wringer already. It's exhausting just to think about; I can't imagine living through it.  You are very strong.  I'm sending hugs to both of you, along with prayers for continued strength. 

[willieandwinnie]

Oh Lord no LightLizard, he has a perfect match unrelated transplant that is working wonderfully. All the doctors involved said they will do whatever is necessary to make sure this kidney last a very long time. All the specialist we have gone to have told us because Len has gone through so many surgeries he's stomach has paid the price.  

[lola]

I want to pull my hair out for you!!!!! If it's not one thing it's something else. Go take a long hot shower you deserve it that's where I do all my crying too.

[Sunny]

Sorry to hear about the stomach problems Len is having. I hope the Doctors can alleviate the problem so Len won't have the pain and can get back to normal soon.
Best of luck.

[monrein]

  This is for after your shower and your cry, and this is for Len 

[kimcanada]

ww I am not sure what to say except... I am thinking of you 

[okarol]

I wish they could test to see if Len could stop the anti-rejection meds - sadly there is no current test to see who can and who cannot get by without them. Our doc says that's the "holy grail" of transplant medicine.

I am sorry about the news - it's gotta be tough to see Len go through this.

 

[petey]

w&w,
I want to SCREAM for you!!  You're right -- Len has had so many more problems since the transplant.  That poor fella!  I don't know what to say because we've not been through that, but I want you to know that I'm worried about you two, thinking about you two, and praying for you two.  If you're like me, you're probably wondering now just how much more you can take.  Go to the shower, Kathy, and cry, cry, cry!  That helps me (though I thought I was the only one who did this). 

Is Len able to eat anything that doesn't bother his system?  Lord, and he was skinny to start with!

Bless Len's heart.  Bless Kathy's heart.

Love you both!
Marsha
 

[pelagia]

I am so sorry to read your note W&W.

Building off what Petey said in her note - I wonder if there are any diet changes that might help?  One of my friends discovered a few years ago that she is allergic to wheat.  She went to multiple doctors and wasted away to almost nothing before they figured it out.  She was sick all the time, throwing up.  This did not develop until she was in her late 30s. 

If there are any foods that aren't a problem for Len, maybe you can build out from there.

 

[paris]

Poor Len,  it is just one thing after another.  I am so sorry this is happening.  I don't even know what to say except I am sorry and I continue to keep you both in my prayers.  You are such a strong woman.  Lean on us when it gets to be too much.              I think we all use the shower for our release place!     

[MIbarra]

   W&W, you're in my thoughts and prayers. I'm sorry to hear about everything you and Len have to face.

[jessup]

 
The shower is a great place - I use it often too
Stay strong xxx ooo xxx
My sincere thoughts, love and best wishes to you both
 

[willieandwinnie]

I wish they could test to see if Len could stop the anti-rejection meds - sadly there is no current test to see who can and who cannot get by without them. Our doc says that's the "holy grail" of transplant medicine.

I am sorry about the news - it's gotta be tough to see Len go through this.

 

okarol, this was actually discussed. The GI and GP doctors want to talk to the Transplant doctors to see if they can reduce the prograf. God, that scares me. Len takes 1mg twice a day and everyone has told us that isn't much. I so hate them using Len for a guinea pig, he has been in this position before. I'm going to do bunches of research today and make some phone calls. 

Marsha,  Len has been on a low residue/low fiber diet since last November and that doesn't seem to work consistently either. Len's weight had gone up to 147 but yesterday was down to 144. He drops weight so quickly, he can loose 10 pounds in a couple of days. I worry about him getting enough fluids and I seem to nag him all the time. The GI said yesterday that the feeding tube could be used to alleviate the pressure from Len's stomach (burbing is what he said) and Len could eat. I feel like I am hanging from a thread and would just like someone to take care of me for a little while.  I'll get over my pity party and get on with what needs to be done for Len. I would like to be in the head of the line for a nervous breakdown. 

Linda, Len has been through all the food allergy stuff, first they thought it was dairy, then oats, then pork and then they said he has no food allergies.  We (I mean ME) have kept a food diary of everything Len eats and the doctor even said yesterday that there doesn't seem to be any connections to what he is eating and triggering the stomach problems. He did call Len a walking miracle and assured me they will take a good long look to see what will help him. Len doesn't want a feeding tube again (it brings on another set of problems in itself).

  Everyone for your thoughts and prayers. I seem to hog them. 

[Marley]

W&W
I'm so sorry Len is having problems.  I hear you about being first in line with the nervous breakdown--but we just don't have the time, do we!  I'm sending my best wishes for Len to get back to his 'normal' again.....my "to do" list is probably as long as yours is lady!    Don't forget to take care of YOU too.

 

Marley
  

[petey]

Kathy, How's Len doing today?  Any better?  I thought about you two all night long and then all this morning.  I have to run to the doctor (me, this time, not Marvin), and I jumped on here really quickly to see if you had posted any more.  Let us know how he's doing today.  How are you?  What can Marvin and I do?

[Joe Paul]

Sorry to hear this. I hope things get better for Len, and you.

[willieandwinnie]

petey,  bless your heart. Are you okay? Len isn't feeling too well. I made his appointment for the gastric emptying study for Nov 12 at 8am. Len said no to another feeding tube. PERIOD. I'm getting ready to go pick Ramona up, her SUV is going in the shop and she needs to borrow our car. It will get my mind off stuff for a while. I spoke to the transplant coordinator and she said the our GP had called and wanted to speak to the transplant surgeon but he was in surgery. She said they talked about trying to lower Len's prograf level to see if he can get some relief. I guess they will talk to GP and let us know. I hope you are alright Marsha. I would love for you to put your arms around me and tell me this is going to get better. I wish we didn't live so far away. Please let me know how you are!  Kathy

[The Wife]

Sending both of you love....

[twirl]

W&W
love to you and Len
 

[kidney4traci]

Hope Len and you get relief soon! You two deserve a break!!! 

[petey]

  oh, willieandwinnie!          

I'm so sad    I'm sad for Len.  That man has been through so much.  Okay, Nov. 12 -- that's what? two weeks away?  I wish it were sooner, but I guess we take what we can get with doctor's appointments and the like.  Is there any way to move that study up some?  just a day or two, or a week...  We found that with antirejection meds that it's really just a guess at what level individual patients need.  Maybe lowering Len's Prograf dosage will help with the gastro problems.  If they do lower it (Prograf), I would want Len to have blood work drawn on a more frequent basis (at least at first) to make sure the lower level is enough...but I think keeping it at enough (for the transplant) and not too much (to mess up the rest of his system) is the tricky balance.  The things he can eat and wants to eat, just keep stuffing him with.  I know you will.  You're as over-protective as I am!

I'm so sad for my Kathy.     I know how hard all of this is on you.  I know you're frustrated because, if you're like me, you really feel helpless in times like these.  You want to do something -- anything -- to make Len better, but there's nothing you can do to make him "well."  But, surely, you know that Len gets strength from you -- that in itself is a huge help to him.  For him to know that you're right there, that must help him, too.  Hang on a little bit longer, Kathy.  God has not brought you and Len this far to abandon you now.  There will be better days -- there HAVE to be better days.

I'm so sad for me     I want to be there for my friend, and we're so far away.  I feel helpless.  Shut your eyes, Kathy.  There's my shoulder -- lean on it, cry on it.  Pass some of that worry over to me.          

Remember to take care of you.  Escape in your mind by working on those beautiful dollhouses ... concentrate on cooking, your kids, those precious grandkids ... cuddle and pet Willie and Winnie (there's research out there that proves that having a pet helps relieve stress) ... do anything to keep your mind off of everything (or at least, as much as you can -- I know that's not easy).  I'm a keyboard away.  Keep me updated.

Love to Len --