I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: willieandwinnie on October 28, 2008, 11:21:35 AM
-
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 :banghead; 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. :'(
-
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?
-
:grouphug; 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 :grouphug;
-
:-(
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
-
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. :grouphug; :grouphug; :grouphug;
-
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. :waving;
-
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. :cuddle; :cuddle;
-
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.
-
:cuddle; This is for after your shower and your cry, and this is for Len :cuddle;
-
ww I am not sure what to say except... I am thinking of you :cuddle;
-
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.
:cuddle;
-
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
-
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.
:cuddle;
-
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. :grouphug; I think we all use the shower for our release place!
-
:cuddle; W&W, you're in my thoughts and prayers. I'm sorry to hear about everything you and Len have to face.
-
:cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle;
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
:grouphug; :grouphug; :grouphug; :grouphug;
-
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.
:cuddle;
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. :cuddle;
Marsha, :thx; 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. :rofl;
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. :banghead; 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).
:thx; Everyone for your thoughts and prayers. I seem to hog them. :cuddle;
-
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.
:cuddle;
Marley
:guitar:
-
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?
-
Sorry to hear this. I hope things get better for Len, and you.
-
petey, :waving; 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! :cuddle; Kathy
-
Sending both of you love....
-
W&W
love to you and Len
:(
-
Hope Len and you get relief soon! You two deserve a break!!! :cuddle;
-
:grouphug; oh, willieandwinnie! :cuddle; :grouphug; :cuddle; :grouphug; :cuddle;
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. :grouphug; :cuddle; :grouphug; :cuddle; :grouphug;
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 --
-
petey, you have me bawling :'( :'( :'(. I have to answer this one later. Stressful day. :cuddle;
-
:grouphug; for both you and Len, Kathy. It's just not fair and I so wish it didn't have to be so darn hard. :grouphug;
-
:grouphug; hope it seems like a better day tomorrow.
-
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.
:flower; Today, Len's stomach is feeling better, thank God for that. :bow; 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. :banghead; 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.
:cuddle; 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.
-
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...
-
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. :grouphug; :grouphug; :grouphug;
-
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... :2thumbsup; You and Len right around the corner from me and Marvin? Perfect! :clap;
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 :rofl; ). 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.
-
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 :cuddle;
Anne
-
:grouphug; :grouphug; :grouphug;
-
I'm just going to sit here and breathe with you...
-
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. :cuddle;
-
:cuddle; Thank God the kidney is doing great! :cheer:
-
:yahoo; that's great news W&W :cuddle;
-
:grouphug; I hope the lower dose makes a diffrerence.
-
Keeping you BOTH in my prayers. :grouphug; :grouphug;
-
Good news! Things are looking up for your Len. Keep doing what you've been doing to take care of him.
-
:grouphug;
-
how was Len's day today, 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. :cuddle;
-
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.
-
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. :banghead; I'm sure Len probably won't do much today either but that's okay.
petey, give Marvin a super :cuddle; 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 :twocents; worth. Let me know if I can do anything for either of you. :waving;
-
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 :grouphug;
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. :2thumbsup;
-
Thinking of you both WW and sending love.
-
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. :thx; Thank you for all your thoughts and prayers. :grouphug;
-
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--
-
:grouphug;
-
I took Len to the hospital at 7:30 this morning for the nuclear emptying study. The machine they use is really wild. They gave Len the smallest hard boiled egg I have ever seen. He had to lay flat on this bed like thing for almost 3 hours. The tech ask me if I knew Len had gall stones and I told him yes we knew that, so that is another question for the GI doctor. Tech said that Len's stomach was slow to empty but wouldn't say much more, he said the films will be read by another doctor and forwarded to GI doctor. Doctors, doctors everywhere. I have to call the GI doctor now and schedule the endoscope (does it ever end). He's local Neph's office called saying Len's lab work is showing the prograf level at 5.7 and that is too high so we have to go get more labs done after Thanksgiving and depending on how they look Len could have morning prograf reduced to .5 also. Lord, something else for me to worry about. 1 mg a day of one medication doesn't sound like much to me when I read what other folks are taking. I must of been born a worry wart.
When we got home our oldest Granddaughter (Amanda) was here (pleasant surprise). She had a certificate from her high school that she is carrying a 4.0 grade average. She then told her Pop and I that she wants to be a teacher. How about that? We are so proud of her. I fixed breakfast for all of us and Amanda went back to school and Len is now curled up in his recliner with Willie, napping. The rain has started here and is suppose to continue through Saturday morning. Yuk.
Thank all of you for your messages and prayers. What would I do without you. I don't even want to think about that. :grouphug;
-
There's always something that's the only sure thing. Good news about Amanda. How sweet that she dropped by to let you know.
-
Okay, I can lighten up a little on the Len-worrying I've been doing. (I won't completely quit worrying about him until w&w lets us know the full results.) I'm feeling really upbeat about all of this.
Supposed to rain here today from this evening until Saturday. Dreary weather.
Oh, Kathy -- Amanda wants to be a teacher? I couldn't be any happier. It's a good job and a wonderfully fulfilling way to spend one's life. I don't think I'd want to be anything else. Does she want to teach little kids or big ones? Any area she's considering (English is a wonderful thing to teach...hint, hint)? There are lots of scholarships out there for prospective teachers. Tell her to go to "College Foundation, Inc." website and type in "teacher." If she works in a disadvantaged system, she could even get loans "forgiven."
-
Thanks petey. It is raining pretty hard here right now but is suppose to ease up some later tonight, so the weather guessers say.
Amanda said she'd like to teach younger children and she excels in Biology, Science, English and Theater. I can even picture in my mind her doing Christmas shows. We went to her play last weekend, "Phantom of the Soap Opera., it was really funny. I will definitely tell her about the web sites as she is having a fit over the cost of schools around here. I might have to pick your brain over some of this as Len and I told her that we would help in anyway we can. Open mouth, insert foot. :rofl;
Len actually said he feels pretty good this afternoon and he is starving, which always makes me happy. I try so hard to get him to take it slow but when he is hungry, he will eat, with or without my help.
I'll keep updating on his progress and what all these doctors are telling us. :cuddle;
-
Yay for teachers!! :cheer: Oh.. shhh.. I'll be more quiet since Len is sleeping.
-
Thank God he is hungry...that is good.
Ann
-
:bandance; I hope Len continues to feel better.
-
:cuddle;
-
Kathy I'm sorry I've only just read this thread, I'm still catching up on messages, I just wanted to say my thoughts and prayers are with you and Len. :grouphug;
-
Kathy,
Just wanted to say I am still praying and pulling
for you and Len.
It is raining here also, a most depressing kinda day!
My daughter teaches high school English, and loves it!
She graduated Magna Caum Laude - so Mama is very
proud of her! Sounds like your G.Daughter is a great kiddo!
Anne
-
The GI doctor called this morning himself and said that he got the results of Len's emptying study and wants to see Len tomorrow. Now I'm really worried. When the docs call you themselves and want to see you that quickly, you can't help but worry. :banghead;
-
I hope the GI doc has a plan. Hopefully that's why he wants to see him. I am praying for the best outcome. SENDING LOVE! :grouphug;
-
Sending my love and caring thoughts too :grouphug;
-
Maybe the doc is going out of town next week for Thanksgiving and doesn't want you guys to have to wait for the results...
Maybe the results are good, good, good, and the doc wants you to know immediately...
Maybe it's something that can be solved/improved if a treatment (meds or something) is started right away...
Maybe...
Maybe I'm trying to think of only positive stuff because I'm worried, too. What time are you going to see the doc? We want to know what you find out as soon as you can get back here and tell us.
Tonight will, undoubtedly, be stressful, restless, and agonizing for you two. Sending you love and warm thoughts -- and prayers. I'd say, "Try not to worry tonight," but I know that wouldn't do any good. You're too much like me -- you'll worry anyway.
-
WW..I have had Dr's call me by themselves just because they were very caring people..not many tho. I went in so stressed and felt so good when leaving. I am sending a prayer for you two.
Ann
-
petey, G-Ma, rose, okarol and Anne, that's another reason that I am worried. He is seeing Len at 12:30, which he said was he's lunch hour. My stomach has been in knots all afternoon and Len said he didn't want to talk about it. This is the GI doctor that said Len should get a feeding tube a few weeks back. Len has said hell no to that. I'll let you know tomorrow afternoon what he says. :cuddle;
-
We are all with you...I hope he just decided Len is a special enough person to fit in an appointment during lunch. We will be waiting.
Ann :grouphug;
-
I'll be thinking of you both tomorrow. :grouphug;
-
Lots of thoughts and love for you both
:cuddle; :grouphug; :flower;
-
:grouphug;
-
Prayers for tomorrow :cuddle; We love you both.
-
:banghead;
Like everyone here, I want you and Len to have some smooth sailing for a change. I'll be thinking of you both tomorrow. :cuddle;
-
I went to bed thinking about Kathy and Len last night, and I woke up this morning thinking about Len and Kathy... I imagine they'll be on my mind all day.
I'm thinking good thoughts, willieandwinnie! I've got my fingers crossed and my prayers said.
-
:cuddle; :grouphug;
-
:grouphug;
-
:grouphug; :grouphug; :grouphug;
-
:grouphug; :cuddle; :cuddle; :grouphug;
-
Okay, we just got home. We do have some wonderful doctors. The study they did for emptying showed that Len's stomach only emptied 3% in 90 minutes, NOT GOOD. He again suggested a feeding tube but totally understood Len's point of view. The doctor is going to do a endoscope next Wednesday at 9:30am. He prescribed some heavy duty pain medications, Liquid Fentanol and Dilaulid by injection. He seems to think that Len's Duodenum has a kink in it and the new kidney is probably contributing to this problem. He will know more after the scope next week. Please keep him in your prayers. The doctor actually wanted the scope done tomorrow and we told him we don't do any of those kinds on things on Fridays anymore. He also told us that Len will forever be on the low fiber / low residue diet. He talked about the experimental pace maker for the stomach and also the medication from Canada that the US won't approve because there is no money to be made on it. How sad is that. I'll keep updating as we progress through this. Thanks for being there for me. :grouphug;
-
:2thumbsup; I am happy to hear that the news was worthwhile and that you have faith in his docs.
It sounds like they will continue to seek answers for Len - which is great!
-
I will keep praying for you and Len.
Ann
-
I'm somewhat encouraged by this news. The diet sounds like something Len can do (maybe not like, but do). If he has a kink, are they considering surgery? How do you "unkink" it? I'll wait for news on the scope next week. You and Len always stay in the forefront of my mind.
-
okay, manageable is good. and now you have an explanation for the stomach problems. sounds like things are headed in the right direction. maybe? :cuddle;
-
at least you now have a direction to head in.
-
Still thinking about you and Len and praying for some relief for him. Out of curiosity, what is the medication from Canada? :grouphug;
-
monrein, the drug is Domperidone. The US FDA has not approved this drug but I can get it filled through a Canadian pharmacy with a written prescription. The doctor gave me another list of things to research (he said knowledge is power) so I have spent most of the morning reading and re-reading. I just want Len to feel better and enjoy not being on dialysis so I have taken on more responsibilities then I think I am capable of doing. We shall see. :cuddle;
-
I totally agree that getting anything done on Fridays is a bad idea. You are both in my prayers. :grouphug;
-
Got Len home a little while ago and fixed him some cream of wheat and a scrambled egg, and he is now resting in his recliner. He said he is still feeling drunk from the meds they gave him for the Endoscope. The doctor compared this one to the one Len had done in 2001 and said that the new kidneys position is contributing to the kink in his duodenum. He told us that there isn't really anything that they can do for it. He said that Len needs to make sure his food his chewed well and the low fiber / low residue diet is the only recommendation he has right now. He said he isn't even sure that the stomach pace maker would help and he doesn't want to put Len through anymore procedures then he has to right now. We discussed stopping the reglan and going with the Domperidone but he said he wants to take the wait and see attitude at the moment. The doctor said that Len has a really lazy stomach. I learn more stuff everyday. Thank you guys for always being here for me. I am now going into my kitchen to start cooking for tomorrow and make the pumpkin cheesecake that I promised Len for Thanksgiving. You guys are the best and I don't know what I would do without you. :cuddle;
-
I had hoped the doc would say, "Here's a magic pill, Len; take it and all will straighten out." It sounds like he said, "It's just something you're going to have to live with." I don't like that for an answer, but what else can you do? Except fix Len whatever he wants to eat..I've never had pumpkin cheesecake -- how is it?
-
petey, we had prayed for an easy solution but it wasn't meant to be. Len is handling it pretty well. Len said that we'll continue to do what we are doing until we can't anymore. Not much else we can do. Len ask me to fix some pretty weird stuff sometimes and I always do it. I am thankful for everyday I have with him. petey, you have got to try this pumpkin cheesecake, you can't stop at just one piece. I have it in the oven now and the whole house smells wonderful. Have a great Thanksgiving and hug Marvin for me. :cuddle;
Pumpkin Pie Cheesecake
2 Large Graham Cracker Crust (I like to make my own)
¼ cup all purpose flour
1 Tablespoon Pumpkin Pie Spice
1 - 15 oz can Plain Pumpkin
3 packages Cream Cheese (softened)
1 cup plus 3 Tablespoon Brown Sugar
2/3 cup granulated Sugar
4 eggs
Mix everything except eggs, mixing well after each addition. After mixed well, add eggs, do not mix too long after the eggs have been added.
Bake 325 oven till set in the middle.
Tip: Before heating the oven, place small baking pan with 1-2 cups water on oven rack below the center rack. This will prevent the pie from cracking as much. Leave the water in oven during the baking and cooling process.
Place pie to cool for at least 6 hours.
Top with whipped topping and sprinkle with pumpkin pie spice
-
:grouphug;
-
I never heard of lazy stomach before this. Just read a little on the web. You're right. You can learn something every day here at IHD. Has Len tried eating more frequent smaller meals? Does that help? Your pumpkin cheesecake recipe sounds yummy W&W. I don't make cheesecake unless I am taking it away from my own home very quickly!
-
pelagia, we are trying smaller more frequent meals and it does seem to help some. :banghead; I feel like I live in the damn kitchen and I have dishpan hands so bad. Now mind you, I do have a brand new dishwasher but with the two of us it takes days to fill it up and by that time I am out of glasses. Try the cheesecake, you'll love it. :cuddle;
-
Thanks for the recipie....I hope Len feels better...and you take care of yourself..........how about different baby foods to give you a rest...that is what I ate after my surgery and still do when I have stomach problems..just my :twocents;
-
Thanks G-Ma. We tried the baby food route and Len would immediately :puke; I have learned how to cook soft things pretty well. :waving; I am getting over my 6th bout of vertigo. I am sick and tired of feeling drunk without the benefit of booze. :cuddle;
-
Oh I'm sorry. I hope you start feeling better or just get some booze too...I think flip would have recommended a taste? God bless flip and all of us.
-
I'v never heard of lazy stomach either. Sounds like it can make you pretty miserable.
Sorry Len has to go through all of this, too. And you too WW. Hang in there, there'll
come a day when things are better.
Love, Mimi
-
:banghead; Len has been on Morphine shots and Fentanyl tablets every 4 hours since Sunday. His stomach just seized up again. I had to run around yesterday to get some more syringes that were the right ones. Our GP called yesterday afternoon and said if Len can't start getting fluids in him this morning, I need to get him to the ER so he can get IV fluids. He hasn't had one of these since October and we have no idea what triggered this one. I am really thankful that they let me give him injections at home so I don't have to deal with the hospital. He was suppose to go get labs done this morning but that isn't going to happen. I have just been trying to keep the dogs silent (harder now that Willie is feeling better) and just let him rest. I told Dr. Gill that yesterday morning Len had the horrible shakes and really felt like :puke; Dr. Gill said that the pain pills that Len had been taking were just sitting in his stomach and not being obsorbed and the stomach eased up enough that they went to his bowels and he got too much of a dose. Lord, I'm killing him. On Sunday morning Len weighed 148.2 and yesterday afternoon when I weighed him he was down to 142.0. It is so hard for me to watch him go through this that my stress level goes through the roof. If I only could figure out what triggers it but I have no clue. I really worry about his new kidney when he goes through this because he just can't get fluids into him. I'm praying that today will be a bit better and I can get something to drink in him. Thanks for listening to me again and I'll keep updating when things change. :thx;
-
:grouphug; :grouphug; :grouphug; :grouphug;
-
:grouphug; I hope this settles down soon. The part about the pain pills sitting in his stomach sounds very scary. :grouphug;
-
Oh, W/W,
Does my heart go out to you!
I ampraying that Len feels better, and I can
only imagine your stress level - especially concerning
the fluids, and also that wt. loss
We watched my husband go from a very "Big Guy"
to 150 lbs when everything happened it seems almost at
once, after his bypass surgery.
Thank God, he is now back to 218 lbs, and is almost himself-
considering the kidney failure!
Stay strong, hug your doggies, and I will keep praying for all
of you
Anne
-
My prayers are with you W&W. :grouphug;
-
Just want you to know that I pray for you and Len. Caregivers turning into doctors happen all too often. One thing we have to do is remember that we can't know everything and to not beat ourselves up for that. :cuddle;
-
:grouphug; here's hoping you get it all figured out :grouphug;
-
Please take very good care of yourself also. We are all praying for you both.
Ann
-
I'm sending hugs and prayers to you and Len, and hoping things get better soon. :cuddle; :grouphug;
-
:grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
-
Lots of love and prayers for you both
:grouphug;
and woof woof to the darling dogs - glad willie is better
Hope things are improving mate
-
W&W,
I'm keeping you, Len, and your furry babies in my thoughts and prayers. Sending calming, shhh-ing vibes to the puppies so Len can rest. I wish they would find a solution to his suffering. :cuddle;
Glad Willie is feeling better. I hope you can say the same for Len soon.
:grouphug;
-
Prayers are going up for Len and you, hope they get him fixed up soon :grouphug;
-
Oh WW I am so sorry to hear all of this. What stress you both must be going through.
Hang on as tight as you can to Jesus. He will help ease you through this. I will be praying for
you both.
Much love to you both,
Mimi
-
Just adding my caring thoughts to everyone else's :grouphug;
-
I am just checking in and hoping that today is a better day for Len and for you, too. :cuddle;
-
:grouphug; :thx; Len didn't take any pain medication yesterday :yahoo; I got him to eat some jello and some broth. Today we are going to try cream of wheat and scrambled egg and see how things go. I weighed him this morning and he is down to 139 and that makes me sad. We will just keep taking things as they are thrown at us. Thanks so much for all the good wishes, you guys are such a blessing. :cuddle;
-
:grouphug;
-
You and Len have been thrown so many curve balls and you just keep swinging at them. I can't imagine how tired and worn out you are. I just want to hug you right now. :cuddle; You are a true hero. I think every kidney patient would be honored to have a care partner like you. We all are surrounding you with love and when you can't stand up for another minute, imagine all of us around you helping to hold you up. :grouphug; We are all beside you in spirit. Tell Len we all love him, too.
-
You and Len have been thrown so many curve balls and you just keep swinging at them. I can't imagine how tired and worn out you are. I just want to hug you right now. :cuddle; You are a true hero. I think every kidney patient would be honored to have a care partner like you. We all are surrounding you with love and when you can't stand up for another minute, imagine all of us around you helping to hold you up. :grouphug; We are all beside you in spirit. Tell Len we all love him, too.
That is really well said Paris. Yes, W&W, this is how we feel but I would never be able to say it so well. Here's hoping that today is a good day for Len and you!
-
I took Len this morning for labs (they probably won't be so good) and went to see the GI doctor. He suggested surgery again and Len said NO. He has had enough surgeries in the last 8 years to last a lifetime. GI doctor prescribed more pain medication and and said that this is how Len's life is going to be. We won't know when one of these attacks will hit and will have to have the pain medication ready at a moments notice. I'm kind of bummed out. :'(
-
Oh, Kathy,
So sorry to read this. Maybe if given some
time, tho, he will improve on his own without
any more damn surgery. (We do know Drs
can be wrong)
Keeping both of you and the pups in my thoughts
and prayers
Anne
-
:cuddle; Kathy - I don't blame you for feeling down. You've been through so much and it must seem like it will absolutely never end.
Sending you hugs and love, my friend. One day at a time is all you can do. Take care.
-
Give yourself a hug. :grouphug; These times will not last, they have to get better sometime.
-
Sending you and Len hugs, Kathy. I understand Len's feeling of not wanting the surgery and I just hope that the painful attacks are few and far between. :grouphug;
-
:grouphug; I'm sorry that it's more bad news for Len. Really sorry. You truly deserve some good news. :grouphug;
-
Did I miss something? Did you go to a different Dr? That may be an option if you havn't. We are praying for you.
Ann
-
I am sorry, I don't know what to say. I think we all know in one way another what it is like. I am so sorry. :cuddle;
-
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. :cuddle;
-
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.
-
I'll just keep praying. We love you both :cuddle;
-
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. :cuddle;
-
I am praying for you and Len
Ann
-
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.
-
WW, I was just reading through this thread, and I am so sorry to hear of Len's troubles. My thoughts are with you. :cuddle;
-
Lots of love and prayers to you both
:grouphug; :grouphug;
-
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 :cuddle; :cuddle;
-
:cuddle;
-
Dear W/W
I feel so very bad for you - I want to send
you big big :grouphug; :grouphug; :grouphug;
Thinking and praying for you always
Anne
-
Thinking of you and sending good thoughts your way :grouphug;
-
:grouphug; :grouphug;
-
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. :bow;
-
:grouphug; I hope it helps!
-
I'm really hoping this will yield some relief for poor Len's stomach. At least that sounds a little hopeful, Kathy. :grouphug;
-
:grouphug; :grouphug;
more prayers and hugs coming
-
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. :grouphug;
-
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.
-
:grouphug; My thoughts are with you and Len.
-
A little ray of hope! Like you said "baby steps". I am still saying lots of prayers. :cuddle;
-
:grouphug;
-
:yahoo; 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. :cuddle;
-
Today, we will just celebrate that Len got some sleep :yahoo; My friend always tells me not to cross that bridge, because God isn't finished building it yet. :cuddle; :cuddle; I am praying that this is the beginnng of better days for both of you. :cuddle; :cuddle;
-
...oh, good news, Kathy! Good news! :yahoo; :yahoo; :2thumbsup; :thumbup; :clap;
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!
-
That's very welcome news that Len is getting some sleep.
-
Glad to read the good news, W/W!!!
Will pray that it will continue, boy do you
two guys need and deserve it.
Sending :grouphug; and good thoughts,
Anne
-
Great news mate
Lots of love and prayers for you and Len
:grouphug;
:flower; :flower;
-
Just got off the phone with Neph and Len's prograf levels are still to high. Len has to go get labs taken again in the morning at exactly 12 hours since last dose. Doc said that when he get the results he we decide further action. Len said he has had enough labs drawn in the last week. I am just happy that they seem to be staying on top of this and maybe we will get it sorted out. Thanks for listening to me again. This had been a long journey. :cuddle;
-
I agree, it's comforting that they are trying to sort it out. When Jenna's prograf was a little high they reduced it a little right away, then did labs a week later.
-
:grouphug;
-
I agree, it's comforting that they are trying to sort it out. When Jenna's prograf was a little high they reduced it a little right away, then did labs a week later.
The doctor did lower it but labs showed it was still high, took him this morning for repeat to see if it was a lab fluke or what. Neph said he would call and let us know what to do next. Never a dull moment around here. :waving;
-
:grouphug;
-
Sending prayers and :cuddle;
Anne
-
Love you, Kathy and Len!
-
:yahoo; Well, the doctor called and Len spoke to him. After the 4th blood test and lowering morning and evening doses, the prograf level is where the doctor wants its. Len now takes .5 in the am and pm. More labs in a month. I haven't heard from Washington Hospital Center Transplant Coordinator so I'm guessing they are happy also. Finally. :cuddle;
-
finally , finally, finally ! Good news, willieandwinnie! Now, let's work on fattening Len up! I hope this is the turn-around for him and he's headed on the way up, up, up!
-
So glad to hear this good news about Len. Sending you both positive thoughts for continued improvement.
-
:yahoo; this is great news :yahoo;
-
Hooray!!! :clap; :clap; :yahoo; :yahoo; :clap; :clap;
So, so happy to read good news for you both,
W/W!!!!!!
Anne :flower;
-
That's great news. Hope everything continues to go in the right direction :clap;
-
:clap; Thank goodness. I am so glad for your good news. You deserve for good things to start happening. :grouphug;
-
:cheer: :cheer: RELIEF! :cheer: :cheer:
Thanks for the good news!
-
Yippee mate
:bandance; :bandance;
Lots of love to you both
Hope things keep improving - stay positive mate
:grouphug;