Will This Ever End

[willieandwinnie]

petey, you have me bawling  . I have to answer this one later. Stressful day. 

[monrein]

   for both you and Len, Kathy.  It's just not fair and I so wish it didn't have to be so darn hard. 

[pelagia]

  hope it seems like a better day tomorrow.

[willieandwinnie]

I had to take a shower after reading petey's post because I needed a good cry again. Not so much for me but for Len. He has been dealing with horrible things for almost 9 years and I just get so frustrated seeing him upset. I wish it was me and not him.

Today, Len's stomach is feeling better, thank God for that.  He didn't sleep well last night and it is cold and windy here so he is napping. I'm waiting for the GP nurse to fax me his labs and Monday he has an appointment with the local Neph and I have my list of things to talk about. Len just hates the cold and winter and I have actually mentioned moving south (it would be hard to leave my children and grandchildren), but if I thought for a minute he would do better, we would be gone.

When Len had his transplant last September he immediately started having stomach problems, they originally thought he had another bowel blockage, he didn't, the GI doctor tried to do a scope but Len's stomach wouldn't empty so that's when they came up with gastroparesis. Well, they stopped the Cellcept and the GI doctor started him on something called Amitizia, well yesterday I did some internet research and good Lord, the side effects of this drug are amazing, first one, stomach pain and bloating. I looked back at the notes and calendar that I keep and lo-and-behold, some of he's problems began when Amitizia began. I will drill GI doctor on that one and tell him to check the FDA site for all the problems with this new wonder drug.  I spoke with the Transplant Coordinator and she said that they are willing to reduce Len's Prograf dosage. She said that since Len is small they might cut him back to 1mg a day and do blood test twice a week for a month to see how his levels are. She said to get the gastric study and scope done and the 3 doctors will talk about reducing meds. At least they are listening. She said what petey said, it will be tricky to balance the correct amount.

  petey, after I read your post I went and took my shower because I needed a good cry and Len hates to see me like that. I heard your words and they did comfort me but I could not pass any of this stress on to you, you have enough to deal with. I can't thank you enough. My poor children don't know how I have managed to stay sane all this time. I did cross stitch some last night and that always seems to relax me some. I finished the Lighthouse that Len and I built and need to post pictures of it. It has a special place in Len's office and he just loves showing it off.  I'm praying real hard that after all these tests are done that we can find some solution to Len's problems other then a feeding tube. Please hug Marvin for me and tell him to hug you for me.

[kidney4traci]

That is some of the down side I worry about with a transplant - side effects of meds.  Right now I am only on two meds.  I do worry about the new meds, but which is better?  Tracsplant is supposed to be better than dialysis, but as you said, Len seemed better before while on D.  Deep breath... well I pray things turn around for him.  You are amazing in doing this reseach for him.  Blessings and hugs to you both...

[Romona]

Hang in there! I talk to someone on another board that only takes Prograf once a week. Sometimes the level is not even detected in his blood. We both were transplanted at UPMC in Pittsburgh. They use Cylex and Eliza tests to measure immune suppression. Len may do well on a lower dose. I have been having stomach problems, headaches, muscle aches ect, since my Prograf was upped by 1 mg in May. I want to cut back. I am not having nearly the problems Len is having. 

[petey]

willieandwinnie,
It's good news that Len's stomach is some better...now, we want it to get A LOT better!  Keep researching and preparing that list of questions for the neph on Monday.

Unfortunately, Marvin and I have found that we have to do a lot of the "leg work" ourselves with this disease and its treatments.  I mean, the docs usually don't TELL you much about other options, side effects of certain drugs, possible outcomes of procedures, etc., etc. unless you ask specific questions.  When we ask, they will talk and tell you what you really need to know.  (The ONLY doctor that Marvin's seen in the last 14 years -- and he's seen thousands of them -- who started telling us everything upfront is his vascular surgeon.  He's a great guy and the best surgeon.  He's the smartest doctor we've ever encountered, and he treats us like we're just as smart as he is.  I love this man.  The rest, now that they know I'll grill and question them over everything, offer more information from the start of our visits.  But, I still have a list of questions ready for each one.  Marvin says he knows they hate to see me and "MY LIST" coming, but, too bad!)  What has been said on this site many times really is true -- KNOWLEDGE IS POWER !!

Kathy, just how south do you want to move?  How about southeast NC?  There's a nice house for sale in my neighborhood...      You and Len right around the corner from me and Marvin?  Perfect! 

I heard your words and they did comfort me but I could not pass any of this stress on to you, you have enough to deal with.

Marvin's doing exceptionally great right now, so I've got room in my life and my heart to worry about someone else.  I don't want to worry about Len (because I want him to be doing so good that he doesn't need me to worry about him), but I'm ready.  You just say the word.

Sane?  I've often wondered myself how I stayed sane through all of this.  There have been times when I've thought I was going to lose my sanity, but then, I didn't (or maybe I did and just didn't realize it  ).  Just keep doing what you're doing -- somehow, I know you'll find the strength and the sanity to continue (we caregivers are the MOST amazing people on earth!).  Also, know that I'm here for you and Len.  For the next few weeks, he'll take the top spot in my prayers.

[2_DallasCowboys]

Kathy,

I just now read this thread.  I cannot say how very sorry I am that you
both are going thru all this.  Trying to listen and keep everything straight
in your mind of what all of these different drs are saying is maddening in
itself.  I can only imagine how you feel.

Please know that I am praying for you both, that this will all be over
and your Len will be feeling AOK!  I am sending a hug from my shihtzu
Mr Rocco to your W&W - and one from me to you and your Len

Anne

[lola]

 

[The Wife]

I'm just going to sit here and breathe with you...

[willieandwinnie]

I took Len for his Neph appointment and he's labs are wonderful. Creatinine .8. They are lowering his prograf. 1mg in the morning and .5mg at night. We have to get labs done in a month to see how they are doing. If level still high in January, they will lower the dose to .5 twice a day. So next week we go for the gastric emptying study and then I have to schedule a scope. We just take one day at a time around here. Thanks for the thoughts and prayers. 

[okarol]

  Thank God the kidney is doing great! 

[pelagia]

   that's great news W&W 

[Romona]

  I hope the lower dose makes a diffrerence.

[lola]

Keeping you BOTH in my prayers.

[petey]

Good news!  Things are looking up for your Len.  Keep doing what you've been doing to take care of him.

[The Wife]

 

[petey]

how was Len's day today, willieandwinnie?

[willieandwinnie]

Not good petey. Waiting for pharmacy to get .5 Prograf which they had to order. His stomach has bothered him today and it is so crappy outside that he slept most of the day. I met Ramona for lunch and finished Christmas shopping. Yeah. How are you doing petey? How Marvin? Hugs to you both. 

[petey]

a yucky, rainy, dreary day here, too...

This was a good day for Len to just lie around, though I wish he felt like doing more.  When will the pharmacy have the .5 Prograf?  I'm so impatient...I hate waiting for something like this -- something that should make him feel better.

We're doing great.  Marvin has turned into his family's caregiver.  His nephew was in a bad auto accident about a month ago and has to go for therapy daily (messed up his arm -- lots of ligaments, tendons damaged).  Well, Marvin goes and "babysits" the nephew (who's 40) some while his wife works, and Marvin drives him to his therapy and doctor's visits.  Marvin's sister-in-law had a hip replacement a couple of weeks ago, and Marvin is her driver to the doctor's office.  Now, one of Marvin's brothers is in the hospital, and they don't know what's wrong.  We've thought for some time that this brother was quite sick (lost about 50 pounds in a month, looks like a walking corpse).  His wife called at 6 a.m. and said he was in the hospital.  She said they think it's hepatitis, but they're doing more tests.  I think it's cancer, and that scares me to death.  Anyway, I told Marvin it is was a sad day when he's out taking care of the rest of the family when they're sick.  Marvin said it wasn't sad for him -- it was good because he could.  I said, "But, yeah, when you're the healthiest one in the group, that doesn't say much for the rest."  When I call home from school during the day to check on Marvin, he's never home.  Though I worry about him constantly when he's not in my sight, I'm glad that he's out and going.  Right now, Marvin's on a physical and emotional high -- I hope it lasts.

[willieandwinnie]

Still dreary here, lots of fog and the wind is picking up. Len told me at 11 last night, not to get him up early if it is nasty out. So I'm not. The pharmacy said they would have the new medication tomorrow or Friday, they had to order it.  I'm sure Len probably won't do much today either but that's okay.

petey, give Marvin a super  big and long hug from me. Bless his heart. I'll keep his nephew, sister-in-law and his brother in my thoughts and prayers. Lord, that's so much for Marvin to be doing by himself. Is anybody else helping out? It's wonderful that he is is up to doing all of it but sounds like he needs to pace himself and spread the tasks around to give himself a break. Just my  worth. Let me know if I can do anything for either of you. 

[paris]

WillieandWinnie,  I keep saying prayers for Len.  I hope the medication gets to the pharmacy quick and then makes a difference in Len.  He just keeps climbing on mountain after another.  Whenever I think of him, I remember his picture you posted when he was wearing the Santa hat.  Such a cutie!    Give him our love   

Petey,  I understand a little of how Marvin feels about helping others.  It feels good to be needed.  So many don't need us or think we can do anything.  Even if it means pushing myself, I still need to be "needed".   Marvin is fortunate to have you watching out for him.  Hopefully, he will say no when he reaches his limit.  He is a good man. 

[The Wife]

Thinking of you both WW and sending love.

[willieandwinnie]

I thought I'd better update. Len got the new medication and so far so good. I guess the new labs will tell the whole story. He goes Wednesday at 8 am for the nuclear emptying study and he isn't looking forward to it. We have to get all these test done for the GI doctor to figure out if anything else is going on. I'll keep you posted.  Thank you for all your thoughts and prayers. 

[petey]

w&w, I will think only of Len until we hear from you Wednesday afternoon.  I've got my fingers crossed.  Glad to hear the new med is working so far; let's keep it up!  Love to Len--