I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: willieandwinnie on October 11, 2007, 03:11:37 PM

Title: VITS END
Post by: willieandwinnie on October 11, 2007, 03:11:37 PM
:banghead; :banghead;  :rant; :rant;
Len was admitted to our local hospital last night. Yesterday afternoon, he was doubled over in stomach pain and then started throwing up, quite violently, I got him in the car and took him to the hospital at 3:30 and I got home around midnight and he still was in the emergency room waiting for a room. They had given him some pain medication, anti-nausea and blood pressure medication. They called in he's GP and he got on the phone with the transplant Hospital. At first they said they were going to fly him out but that changed when they determined he didn't have a bowel blockage. They did chest xray, CAT scan and of course a shit load of blood test. He's nurse called me at 1 am to get a bunch of information and I finally went to bed at 2:45 this morning to get up at 7 and start all over again.  When I got to the hospital this morning they said that his CAT scan was read by some hospital in New York and he has puenima. GP doctor was going to put in NG tube because his stomach wasn't emptying and he hadn't had a bowel movement so everything was backing up.  >:( >:( A surgeon came in and said that wasn't a good idea just yet.  :banghead; They are doing everything they can to make sure he doesn't go into rejection. The lastest labs show his creatinine at 1.1 but white count still up (down from last night but still high). His blood pressure at one point last night was 284/104 with a pulse of 129. Scared the crap out of me. They are giving him a lot of IV fluids but nothing by mouth. He just hates that. He is starting to pee more again, finally. One doctor even wondered out loud if the stent was causing the high white count. It just seems we take one step forward and then 2 or 3 backwards. I justed needed to vent and I know you guys listen. If you have a spare prayer, I'd appreciate it as I feel we need them.

willieandwinnie
Title: Re: VITS END
Post by: okarol on October 11, 2007, 03:19:07 PM
Oh man, what a night for you both. I pray they figure out how to get Len some relief! Please let us know how he's doing.

HUGS  :grouphug;
Title: Re: VITS END
Post by: angela515 on October 11, 2007, 03:19:40 PM
So sorry hunni!!! Your in my prayers! Both of you.  :grouphug;  I hope they get everything fixed soon and you can finally get settled back down again.  :cuddle;
Title: Re: VITS END
Post by: glitter on October 11, 2007, 04:29:35 PM
sending good thoughts- what a crappy night for you guys- hope they figure it all out!  :grouphug;
Title: Re: VITS END
Post by: charee on October 11, 2007, 05:04:13 PM
Sending positive thoughts , hope they figure out whats going on :grouphug;
Title: Re: VITS END
Post by: Black on October 11, 2007, 05:23:09 PM
:o How awful for both of you!  Good thoughts and prayers being sent your way.  Please keep us posted.
Title: Re: VITS END
Post by: MyssAnne on October 11, 2007, 05:39:27 PM
Oh hon! This has been such a stressful journey for the two of you. I so hope they get him stabilized and don't do any injury to the kidney!  By all means, come on here and RANT!! I so hope you can get some sleep though. I know, that's hard to even think of, but you need to be rested for HIM, so you can be there for him!!  Hang tough, we're praying for the two of you! :grouphug;
Title: Re: VITS END
Post by: kitkatz on October 11, 2007, 07:49:34 PM
Oh what a night you had. Good wishes to you both.
Title: Re: VITS END
Post by: Wattle on October 12, 2007, 12:50:49 AM
 :grouphug;
Title: Re: VITS END
Post by: 2_DallasCowboys on October 12, 2007, 02:47:19 AM
Hi,

So sorry to read about your terrible nite.  Sending you prayers from New Jersey,
I hope all will be well

Anne and Les
Title: Re: VITS END
Post by: skyedogrocks on October 12, 2007, 06:01:25 AM
So sorry about this!  My best wishes and thoughts are with you both.   :grouphug;
Title: Re: VITS END
Post by: poohkari on October 14, 2007, 10:59:40 PM
 :grouphug; im thinking of you two!
Title: Re: VITS END
Post by: okarol on October 16, 2007, 08:04:32 AM
Sending some prayers and extra {{{HUGS}}} - please let us know how you and Len are doing.  :cuddle;
Title: Re: VITS END
Post by: willieandwinnie on October 17, 2007, 01:36:55 PM
I have type a paragraph two times and lost it both times. I'm going to try one last time.

Len was transfered back to Washington Hospital Center (transplant hospital) Sunday night. They think he has a bowel blockage. This is how it all started almost 7 years ago. It is how he lost his kidneys in the first place. They said he has pneumonia, his potassium is low, phosphates and magnesium. They put an NG tube in (Len hates those things), hooked up all kinds of IVs and took him for xrays and CT scan. The transplant doctor said that the new kidney is working like a champ. It is getting so hard to watch him go through all this. He is down to 129 lbs, I asked the trauma surgeon about TPN for some nourishment and he said that they will decide tomorrow.

Well, I just got off the phone with Len, he passed a lot of gas and had a bowel movement (YEAH) and while he was in the bathroom with nurse nearby he had a couching fit and out came the NG tube. He says his throat already feels better. He has lost so much of the nerves in his belly that he can't always tell when he needs to go to the bathroom. The nurse had to clean him up and change his sheets. I did that today while I was there. Oh well.  I did make him go for a walk down the hall. They stopped pain medication because they said that it can slow things down. I'm sure Dr. Paul (trauma surgeon) will be so happy that he passed gas and had a bowel movement. I don't know what they are going to do about NG tube???

As for me, I am emotionally and physically drained. I spend well over 4 hours everday on the road in horrible traffic. I hate seeing him in pain and laying in a hospital bed. I'm tired of paying through the ass for gasoline and parking gargages. I don't mean for this to sound like a pity party but I really am tired. I don't think I have a tear left in me.

Karol, thanks so much for emailing me. At that moment, you don't know how much I needed it.

Well, that's about it for right now. Please keep the prayers coming and I'll post again when I know more.

Kathy
willieandwinnie


Title: Re: VITS END
Post by: KT0930 on October 17, 2007, 01:43:57 PM
Kathy,

I don't have any words of wisdom, but I am so sorry you're going through this. We're all thinking of you and praying for you and Len.  :grouphug;  :grouphug;

Katie
Title: Re: VITS END
Post by: paris on October 17, 2007, 01:46:02 PM
We can feel your pain and fatigue through your words. Wish there was something we could do. We will keep you in our prayers and constant thoughts.  Give Len our best wishes. Hang in there--we are here for you. :grouphug;
Title: Re: VITS END
Post by: 2_DallasCowboys on October 17, 2007, 02:58:55 PM
Lots of prayers and good wishes going out to
both of you from us.  I am very sorry you both are
goingthru this.   I hope everything will be AOK for
you both!!!

Anne and Les
Title: Re: VITS END
Post by: skyedogrocks on October 17, 2007, 05:42:36 PM
So glad for Len, it's a step forward to him feeling better!   :clap;  I'm sure you are exhausted, so sorry!  Is there anyone who you can stay with while he is in the hospital?  I hope you get a good nights sleep.  You deserve it!!!!  :bow; :cuddle;
Title: Re: VITS END
Post by: willieandwinnie on October 18, 2007, 12:42:07 PM
Lasted update. I just walked in the door after driving over 2 hours in the pouring rain and called Len to let him know I was home. He said transplant surgeon is taking him to OR this afternoon to remove the stent they put in during transplant. They let him have liquids today and trauma surgeon said he dodged a bullet this time. They said they are going to let him have some soft food tonight and see how he does. If he tolerates it and has bowel movement they may discharge him tomorrow afternoon. I am so relieved, I can even explain it.  :bandance;

I can't tell you how much your prayers and notes of encouragement mean to me. You all take care and I'll keep posting.

Kathy
willieandwinnie
Title: Re: VITS END
Post by: MyssAnne on October 18, 2007, 01:10:25 PM
That is WONDERFUL!!!!!!   Oh, I am so pleased!!!!! It's about time, darn it, that things start going well for you two!!!!! :2thumbsup;
Title: Re: VITS END
Post by: pinkrose on October 18, 2007, 01:42:27 PM
 :bandance; Great news! I hope you can rest now!  :cuddle;
Title: Re: VITS END
Post by: okarol on October 18, 2007, 02:15:56 PM
 :yahoo; I am so happy to hear he's doing better - I hope he can come home soon. Take care!  :cuddle;
Title: Re: VITS END
Post by: paris on October 18, 2007, 03:58:34 PM
Glad for any little bit of good news for the both of you. Hope you can get some rest.
Title: Re: VITS END
Post by: willieandwinnie on October 19, 2007, 12:11:56 PM
Hi Everybody

Just a quick message to let you know that I brought Len home today.  :bandance;
He is pretty tired and I'm going to get him to lie down and I have already started on dinner. I hope both of us sleep tonight. I can't tell you what a great bunch of folks you are.  :grouphug; It's nice that people out there really do know what I am going thru and just don't think I am a whinner. Thanks again and I'll keep posting.

Kathy
willieandwinnie




Edited: Fixed banana icon - okarol/moderator
Title: Re: VITS END
Post by: paris on October 19, 2007, 12:29:53 PM
Yeah!! I hope you both can enjoy your dinner and get many hours of restful, refreshing sleep.  You have had a tough time lately.  Give Ken our good wishes! :grouphug;
Title: Re: VITS END
Post by: okarol on October 19, 2007, 12:32:20 PM
 :2thumbsup; I am so relieved to hear he's home. Best wishes for a PEACEFUL night!! And for many more good days to come!  :cuddle;
Title: Re: VITS END
Post by: MyssAnne on October 19, 2007, 12:40:49 PM
He's HOME!!!!!!! :yahoo; :yahoo;  That is WONDERFUL news!!! NOW you can sleep easily, knowing he is THERE beside you!!  That is so wonderful!
Title: Re: VITS END
Post by: skyedogrocks on October 19, 2007, 02:01:17 PM
Yeah, that is great news!!!!  I'm sure you both will sleep great tonight knowing that he is home where he belongs.  Have a wonderful dinner and night!!!  So glad he is feeling better!!!!   :2thumbsup;
Title: Re: VITS END
Post by: Black on October 19, 2007, 02:30:52 PM
:yahoo;  Such good news!!  :clap; Hope Len continues to improve and you get many hours of good sleep.  :2thumbsup;
Title: Re: VITS END
Post by: Sluff on October 19, 2007, 02:36:26 PM
Glad Len is home.  :thumbup;
Title: Re: VITS END
Post by: 2_DallasCowboys on October 19, 2007, 02:51:25 PM
He is home, that is wonderful news!
Here is to a nice peaceful evenening, and then
a good nite's sleep for both of you, this has to
have been such a nerve racking time! :beer1;

Anne and Les
Title: Re: VITS END
Post by: goofynina on October 19, 2007, 03:50:40 PM
 :yahoo; WELCOME HOME LEN  :yahoo;  So glad he is home and resting now, looking forward to hearing what had happend (when you are up to it of course)  I am just glad he is home  :cuddle;
Title: Re: VITS END
Post by: Jannie on October 20, 2007, 10:54:20 AM
Hope Len's recovery continues. Prayers for both of you.
Title: Re: VITS END
Post by: okarol on October 21, 2007, 12:41:58 PM
 :cuddle; Thinking of you guys!
Title: Re: VITS END
Post by: willieandwinnie on October 21, 2007, 03:26:08 PM
Thanks Everybody,

Len is at home and trying to catch up on his sleep. He didn't sleep in hospital at all I don't think. Friday night he said our house was too quite and last night he was up all night peeing. I hope it gets better soon. He's bowels seem to be working but he can't eat much at one time. Combination of the plastic surgery to close his belly up and BIG kidney, there doesn't seem to be much room in his stomach until things feel like they are backing up. They took him off some of he's medications. They stopped Cellcept all together (said it causes bowel problems) and he only takes 1 blood pressure pill a day and he's blood pressure was low this morning 95/67.  He only takes 1mg prograf twice a day and I'm a little concerned about that. Maybe I'm just worrying too much. I don't know anymore. I'm the cooking queen. Lots of small meals during the day and now he takes medication with food or with milk. Things have changed so much in our 7 years that I wonder how I've kept it together this long. Well, I'm pooped. To the point of being dizzy. I have been having terrible pain in my right hip for months and now it just burns all the time. I tried everything last night to get comfortable and nothing worked. Tonight I'm taking a sleeping pill and pray if Len needs me, I'll hear him. I need some rest. We are suppose to go back for Clinic on Tuesday, but I'm calling the coordinator tomorrow morning and asking if we can switch to Wednesday or Thursday. Another 5 hours in the car just makes me hurt more. I'm so sorry that this is just rambling and probably not making much sense. I just want this to get easier and maybe I'm just impatient. Imagine that. Take care everyone and I do try to post on other threads as time permits.

Have a nice evening.
Kathy
willieandwinnie
Title: Re: VITS END
Post by: goofynina on October 21, 2007, 03:31:22 PM
Thanks for the update Kathy and i hope your hip is feeling better, remember, you need to take care of yourself too my friend, so make sure you take time out for you and dont over do it (as if it that easy huh) :)   Our prayers, good thoughts and well wishes are with you and Len always,   :grouphug;
Title: Re: VITS END
Post by: 2_DallasCowboys on October 21, 2007, 06:00:12 PM
Kathy,

I hope your hip will stop hurting and you can
get some much needed rest.  Have you tried
Tylenol PM?  I sometimes get bad hip and knee
pain at nite, this does seem to give me some
relief.
Hope you and Len have a much needed and
peaceful sleep

Anne
Title: Re: VITS END
Post by: willieandwinnie on October 24, 2007, 05:00:12 AM
:banghead;

I took Len to Washington Hospital Center for his clinic appointment yesterday. We ate and started home. By 4:30 is said he was having stomach pains. He went and laid down and by 8:30 I was calling the ambulance. They couldn't get a blood pressure on him so they called advance life support. He was taken to local hospital and at 1:30am this morning after having to come back home and get his medications because the local hospital doesn't carry them, Washington hospital center accepted him back. I have no idea what time this morning they came and got him. I did get a call back from the trauma surgeon that told me not to worry that he would be treated by they best they have. This is just breaking my heart, yesterday afternoon he said he would rather be back on dialysis then going through this. The transplant doctor said yesterday that we had to get a GI doctor to have a look at Len's stomach, so I called them yesterday and they said next Wednesday they would do the scope to see what was going on. I'm not driving to DC today, Len will be upset, but I only got about 3 hours of sleep and the weather here today isn't the greatest and we have the corner on the market for stupid drivers. I'm sure they will be doing lots of tests and I would just be pacing around. The transplant doctor took him off all rejection medications except for 1 mg prograf twice a day. He said Len's kidney is working great and Cellcept is known to cause intestinal problems. Len Creat was 0.9 and his BUN was 22. He has lost so much weight again and muscle mass is just gone. I don't know what the next few days will bring but please say a prayer they can find out what is wrong. I just want my husband back. I'll post when I can. Thank You for listening to me.

Kathy
willieandwinnie
Title: Re: VITS END
Post by: MyssAnne on October 24, 2007, 05:31:01 AM
Oh honey. We're here for you. Go get some sleep now. We'll be praying for both of you, Les has had such a horrible time of it, but then, so have you.  :grouphug;
Title: Re: VITS END
Post by: kitkatz on October 24, 2007, 06:31:01 AM
God speed on his recovery. 
Title: Re: VITS END
Post by: 2_DallasCowboys on October 24, 2007, 06:58:09 AM
Saying prayers for Len, and for you, too
that all will be well for both of you :grouphug;

Anne
Title: Re: VITS END
Post by: okarol on October 24, 2007, 07:51:29 AM
Is it possible for you to stay nearer to him? All that driving is so stressful, and you need more rest.
I hope Len gets some solutions quickly. I am so sorry for you both.
Take care.  :cuddle;
Title: Re: VITS END
Post by: paris on October 24, 2007, 08:28:26 AM
I am so sorry for all you are going through.  Len has had so much going on and you are so exhusted.  I hope things take a turn for the better soon. :grouphug;
Title: Re: VITS END
Post by: skyedogrocks on October 24, 2007, 08:53:06 AM
Oh, I am so sorry about Len.  I hope they figure it out quickly.  I agree, is there a way you can stay closer to the hospital?  Does the hospital offer special rates on hotels for family members?  You are both in my thoughts and prayers!   :cuddle;
Title: Re: VITS END
Post by: Joe Paul on October 24, 2007, 11:25:11 AM
Sorry Len is having so much trouble. I hope you can get rested up, and the hip pain stops soon too, will keep you both in thought and prayer.
Title: Re: VITS END
Post by: goofynina on October 24, 2007, 06:24:22 PM
Sending positive thoughts and prayers your way, I hope your getting some sleep and we look forward to you coming back and telling us some Good news ;)  God Bless you both.  :cuddle;
Title: Re: VITS END
Post by: Sluff on October 24, 2007, 06:29:32 PM
What a roller coaster ride you have been on. Please get some rest for yours and Lens sake. My thoughts and prayers are with you both.
Title: Re: VITS END
Post by: willieandwinnie on October 26, 2007, 02:25:03 PM
I did not go to Washington Hospital Center today. I went yesterday in the horrible rain and traffic, then I sat most of the time alone. Len went for endoscope, NG tube, x-rays and with the pain medication he hardly knows I'm there. They also found gallstones. Today they moved him to a private room, put in a central line so they can start TPN. He has lost so much weight and they said he needs some calories. The transplant doctor and the trauma surgeon will probably both be in on the operation for blockage since it is behind the new kidney. I am just so numb that I am going through the motions. I try to stay upbeat when with him and keep telling him he has been through much worse and came out of it. I doing all my crying when I'm alone. I'm praying for the best but preparing for the worst. If that makes any sense. I'm guessing that they will operate on him sometime Monday. He just wants to get it over with. I'll try to post when I get time or have something more to say. Keep praying that he is strong enough to go through another round of this.

Kathy

willieandwinnie
Title: Re: VITS END
Post by: angela515 on October 26, 2007, 02:30:45 PM
I am so sorry to hear this hun. My prayers are with you both, and I pray for his strength to help him get through this.  :grouphug;
Title: Re: VITS END
Post by: kidney4traci on October 26, 2007, 02:38:20 PM
Please know you are not alone.  Prayers to you!
Title: Re: VITS END
Post by: okarol on October 26, 2007, 02:42:08 PM
Hey Kathy,
Boy you've had a very tough road since since the transplant - I can't believe it's been 7 weeks and Len is still having troubles! The symptoms sound very similar to my friend's who had her gall bladder removed. I pray they figure out what to do and get him on the road to recovery! Do you have any friends or family who can help? You must be completely exhausted. Take care of yourself. :cuddle;  :cuddle;  :cuddle;
Title: Re: VITS END
Post by: willieandwinnie on October 26, 2007, 03:05:39 PM
Hi Okarol,

I have a list of questions for these doctors. I feel like they were avoiding me today. I started at 8 am this morning trying to get in touch with them and nobody called me back. It is so frustrating. I have 2 children from previous marriage that are really just doing their best to keep me sane. They hold me and let me cry, keep things straight around the house and outside for me. Len is under strict contact precautions so they don't like to many visitors with him. We have 2 Yorke's that have been through this whole ordeal with Len (almost 7 years) and they don't like strangers in the house. The other night when EMT's and Advance Life Support were here I had to lock them outback. They were left alone for 6 months back in 2001 except when my daughter came to try and feed them (we have a doggy door) they would run outside and get under the deck. They will not eat for anyone but Len or I. I feel like they have been through so much and I really need to sleep in my own bed. They are also my comfort. I know that I'm just rambling here and I'm sorry. Staying this upset isn't going to help Len or myself. Maybe I hear some good news tomorrow. I sure hope so.

willieandwinnie
Title: Re: VITS END
Post by: goofynina on October 26, 2007, 03:31:53 PM
Here's to hopefully hearing some good news tomorrow Kathy,  you are not alone, we are all with you here in spirit and we are all sending out good positive thoughts.  You need to remember not to push yourself too much, make sure you do get your rest, Good luck and much love to both you and Ken (and willieandwinnie);)  :grouphug;
Title: Re: VITS END
Post by: paris on October 26, 2007, 04:08:03 PM
We are all crying with you and saying lots of prayers for Len. We are worried about you, too. I hope family is helping you get thru the days :grouphug;
Title: Re: VITS END
Post by: Black on October 26, 2007, 05:39:06 PM
Kathy, I am so sorry for you and Len.  After the transplant it should have been easy and having continuing problems like this is so unexpected.  :(  My thoughts and prayers are with you both, and the Yorkies.  Please post what time on Monday he is scheduled for surgery and I'll say a special prayer at that time.  It will finally be better from Monday on.   :grouphug;  :grouphug;  :grouphug;
Title: Re: VITS END
Post by: MyssAnne on October 27, 2007, 07:45:19 AM
Oh Kathy, this has to be so hard on you. You want to be strong for Len, and you are so tired. And now your yorkies are upset too. Poor babies. PLEASE let us know when Len's surgery is, so we can say prayers for him at that time. I'll be thinking of him Monday, well, all wekend, too. Right now, both of you need our prayers. YOU need someone to take care of you, I'm glad you have your children there for you.  :grouphug;
Title: Re: VITS END
Post by: Aldente on October 27, 2007, 08:31:26 AM
I'm speechless, but I'm here because I care.
Title: Re: VITS END
Post by: 2_DallasCowboys on October 27, 2007, 09:10:55 AM
Kathy,

I really, really feel for you with what you are going thru
with your husband right now.   I am praying  for both of
you, for Len to have a quick recovery and for you to
stay strong thru this.  I am so sorry to read of this
ordeal.
I hope you are able to get some much needed rest,
and please hug your precious Yorkies for me.

Anne
Title: Re: VITS END
Post by: thegrammalady on October 27, 2007, 09:51:47 AM
kathy,

i just found this thread and i really don't know what i can say. i want so much to make it better for you. wish there was someone from the board to be there with you, do the driving etc. our thoughts and prayers are with you. hopefully there will be the right resolution to all this soon and you can get back to normal.

susan
Title: Re: VITS END
Post by: Psim on October 27, 2007, 09:55:52 AM
What a scary time for you two! I'm so glad he's doing better. I hope you get some rest soon and all goes smoothly for a long long time.
Title: Re: VITS END
Post by: paddbear0000 on October 28, 2007, 01:49:27 PM
Oh Kathy! I just read this thread for the first time and I'm sooo sorry to hear about Len and yourself! Please just know, Washington Hospital Center is a great hospital (I know,  spent a week in ICU there)and they will do everything they can to help Len. Just remember to talk time out to de-stress yourself. You guys are in my thoughts and prayers!   :cuddle; :cuddle; :cuddle;
Title: Re: VITS END
Post by: Sluff on October 28, 2007, 02:33:30 PM
My prayers are with you both for better times.
Title: Re: VITS END
Post by: kidney4traci on October 28, 2007, 05:22:51 PM
Still praying for ya, hoping today is better...
Title: Re: VITS END
Post by: kitkatz on October 28, 2007, 05:51:29 PM
Lord,
Give this family some good news today.
Help her to take care of him to the best of her ability.
Allow him to feel better and to recover.

Amen

Prayers are being sent daily for you all.
Title: Re: VITS END
Post by: Wattle on October 28, 2007, 06:48:29 PM


 :grouphug;  Hoping today brings better news.   :cuddle;
Title: Re: VITS END
Post by: Black on October 28, 2007, 06:55:31 PM
Prayers are with you both that today was a good day and tomorrow better.  :grouphug;
Title: Re: VITS END
Post by: Amanda From OZ on October 28, 2007, 07:03:00 PM
Sorry Im just reading this thread now, Im sorry to hear len has been having so much trouble after the transplant.

Sending good thoughts and prayers both your way.

Amanda
xxoo

 :grouphug;
Title: Re: VITS END
Post by: letaek on October 28, 2007, 09:28:57 PM
I send you my well wishes, Len is in my thoughts and prayers.
Title: Re: VITS END
Post by: Joe Paul on October 29, 2007, 12:53:12 AM
Praying things soon turn around for Len & you  :grouphug;
Title: Re: VITS END
Post by: willieandwinnie on October 30, 2007, 11:05:47 AM
Hi Everyone

Thanks for all the prayers and well wishes. Len is still in Washington Hospital Center. He is getting TPN for calories and they did start letting him have a low fiber - low residue diet. They said that the Barium used for CAT scan showed a narrowing but everything went through finally. He is on a bunch of stool softeners, laxatives and reglan to empty his stomach. They are screwing around with his blood pressure medications because they said that Cradizem can cause bowel problems.  :banghead; Why did they wait until now to see what side affects these medicines have? They put him back on Coreg and Norvac which he has been on for years. He is only taking 1 mg of Prograf twice a day and that has me concerned. I have been trying to get a copy of his labs all day. Nobody wants to return phone calls and it's really starting to piss me off. They treat you like you couldn't possibly know anything or understand what they are telling you. They DON'T want to see me pissed.  :boxing; They have added so much other stuff to the TPN because his numbers are terrible. Potassium, phoshates, iron, magnesium, chloride, salt and a few others I can't remember at the moment. God knows what they will send him home on. I'm wondering if he'll have to have a home nurse. The transplant doctor doesn't want him discharged with the central line in. TOO MANY DOCTORS.

I went to see him yesterday and had a horrible trip home. Sat on the Capital Beltway for almost an hour. Today I am trying to get bills paid and house cleaned in case he does get to come home this week. Our dogs have brought so many leaves in through the doggy door, that instead of vacuuming, I'm thinking about getting the rake. I have been doing a lot of reading on low residue diets and making a grocery list of things he can eat. He is going to have to eat little bits at a time but lots through the day. This should be interesting. He was on this diet 7 years ago and it sucked then, so I'm sure I'll be bitching about it again.

I just wanted to check in and rant again. I seem to do it so well. Thank You Everyone for the prayers and thoughts. They are very much appreciated.

Kathy
willieandwinnie
Title: Re: VITS END
Post by: MyssAnne on October 30, 2007, 11:14:03 AM
oh, Kathy. You have our support and prayers. I'm glad you're coming in here and venting!! It sounds as if he is where he needs to be, it's not what HE wants, nor what YOU want. But, he is safer. Now, YOU take care of YOU. Okay?? We want you better so you can enjoy Les when he comes home!!   :grouphug;
Title: Re: VITS END
Post by: goofynina on October 30, 2007, 01:22:47 PM
Kathy, i hope there is an ending to this madness and you and Len can just enjoy his new kidney and live happily ever after.  Dont give up, please continue to come here to rant, we are all worried about the both of you  :cuddle;  and i am sorry, but i had to laugh at the visual i got of you raking the inside of your house, gotta love them doggies  ;)  I am glad they are there to keep you company while Len is getting better elsewhere ;)  Keep your faith my friend and remember we are here for you always  :waving;
Title: Re: VITS END
Post by: paddbear0000 on October 30, 2007, 02:03:12 PM
That's quite all right, rant away. It always makes me feel better and it even clears my head a little. I hope Len gets better soon so he can come home. That would relieve half of the stress right there! I completely understand how you feel about the Capitol Beltway too! I went to the University of Maryland and drove that stupid thing a lot! It's absolutely horrible! I sat in traffic once for 2 hours and only made it 1 mile! Once that commute stops, that should end another 1/4 of the stress!  :cuddle; :cuddle; :cuddle;
Title: Re: VITS END
Post by: kitkatz on October 30, 2007, 03:48:56 PM
Keep on going.  I know it is tough with him laid up and out, but you can do it.
Title: Re: VITS END
Post by: 2_DallasCowboys on October 31, 2007, 06:09:56 AM
Kathy,

Sending you the warmest wishes and thoughts for
Len, and you and the doggies, too!
I hope all of this madness is over really soon for you
(like yesterday!!!!)  and you guys get back to
normal.
Hugs to all!!! :cuddle; :cuddle; :cuddle;

Anne
Title: Re: VITS END
Post by: Psim on October 31, 2007, 09:08:28 AM
Thinking of you both and sending good wishes and prayers on the wind for Len coming home soon.
Title: Re: VITS END
Post by: willieandwinnie on October 31, 2007, 11:42:08 AM
LEN'S HOME  :yahoo;

I got up at 4 am and left before 7. Got to the hospital right after 9 and he was ready to go. It took them until after 11 to get all the paperwork and stuff finished. I brought him home, gave him chicken noodle soup and a roll and now he is laying down. It will probably take him weeks to catch up on his sleep. The puppies are so happy to have him home. I have to go get some prescriptions filled and then figure out what to feed him. He looks awful skinny and kind of pale to me. They changed a bunch of medications, so I have to learn all over again. they said his creatinine was .06 and his white count was down to 9,000 (from 24,000). He is only on prograf (1 mg) 2 times a day. We have to go back to DC the week after next, they want to give him some time to rest (what about me).

 :thx; Thank you guys so much for being here. I don't know what I would of done without you. This has got to be the best support group on the planet.

Take care everyone and I'll keep posting.

Kathy
willieandwinnie
Title: Re: VITS END
Post by: paddbear0000 on October 31, 2007, 11:53:31 AM
 :bandance; :bandance; :bandance; That's fantastic! Keep feeding him the chicken soup--it does wonders! It's very nutritious.
Title: Re: VITS END
Post by: 2_DallasCowboys on October 31, 2007, 12:00:29 PM
Yaaaaaaaaayyyy!!!

I was sooo happy to  read your Len is home!

I bet he will recoup real fast, with being back in his
own house and having you and the doggies rite there.

I hope YOU also can catch your breath, and have a
good rest.
Again, so happy for all of you

Anne :2thumbsup; :yahoo; :clap; :bandance;
Title: Re: VITS END
Post by: KR Cincy on October 31, 2007, 12:07:27 PM
We all know there's no getting better in a hospital! Glad he's home so you BOTH can rest and recover!! Take care...
Title: Re: VITS END
Post by: Wattle on November 01, 2007, 02:52:13 AM
  :cuddle;  Oh thats wonderful news. 

 :waving; Welcome Home Len.

No more adventures for a while o.k! Take care, relax, rest and get fit and well.     :grouphug;
Title: Re: VITS END
Post by: Sluff on November 01, 2007, 04:10:44 AM
Glad to hear Len is finally home. You will rest easier not having the four hour drive everyday. Hmmm what can you do with that time?  SLEEP, REST.   :grouphug;  give Len my best.
Title: Re: VITS END
Post by: skyedogrocks on November 01, 2007, 05:29:29 AM
Yeah Kathy!!!!  I am sure Len is THRILLED to be home, just as you are!  You are such a great wife, Len is lucky to have you.  Here's to Len getting better and you & the dogs having your honey back!   :wine;
Title: Re: VITS END
Post by: Psim on November 01, 2007, 09:24:37 AM
Yay! Len's home! I hope you can get some rest too, now that you're not doing that long wretched commute. Tell those dogs to love you both up good!
Title: Re: VITS END
Post by: paris on November 01, 2007, 09:57:48 AM
So glad Len is home and even more glad that you can slow down just a bit.  I am sure you are exhausted.  Just like with a new baby, rest when he is resting. Don't spend that time cleaning--you need to take care of yourself too.    I pray the road will be much smoother for the two of you. You have been through alot. :grouphug;
Title: Re: VITS END
Post by: okarol on November 01, 2007, 02:08:19 PM
 :clap; Yay Len!
 :cuddle; Rest Kathy!!!
Title: Re: VITS END
Post by: okarol on November 05, 2007, 02:09:09 PM
How is Len feeling? Hope he improves every day!
Title: Re: VITS END
Post by: willieandwinnie on November 05, 2007, 04:54:13 PM
Hi Everyone

Len is improving daily  :yahoo;. He is always hungry, which is good. The GI doctor put him on a new medication called Amitiza, it keeps more fluid in the bowels, and it seems to be helping. He is on a low fiber, low residue diet and will be for a couple of weeks, then they will start adding some fiber. He doesn't go back to Washington Hospital Center until next Tuesday. I'm still concerned that the only rejection meds he is taking is 1 mg of Prograf twice a day. He is drinking plenty of water and is peeing up a storm. He is catching up on his sleep and not getting up so many times during the night to pee. When he came home from the hospital he was down to 124 pounds and as of today he is almost 127 pounds. We just keep taking baby steps. I took him for a ride to Point Lookout State Park (it is were the Chesapeake Bay and the Potmac River meet) yesterday and we walked down a rather long pier to watch boats. It's almost getting to chilly to do that much longer, but he needs to get out walking. :snowman;

As for me, I'm still worn out. I had to get my flu shot, the yard had to be cut, tomorrow they are coming to pick up dialyzed/RO and supplies (so I moved most of it out in our garage to have room to pack stuff up) and if that wasn't enough, I just got back from taking both dogs to the Vet to get their shots updated. It has been a pretty busy day. Oh, and I cook 3 meals today also. No wonder when I hit the bed at 10pm I am out like a light within minutes.

We have a hot tub on our deck and I'm thinking that maybe later this week I might have to get a glass of  :wine;  my new book and go chill out. I have to see how things go. I love checking IHD during the day. I'm so glad that more patients and caregivers are finding this site. I don't know what I would of done without it.

I just love you guys. Have a nice evening.

willieandwinnie
Title: Re: VITS END
Post by: Sluff on November 05, 2007, 04:59:40 PM
What a nice update and nice sentiments.

We love you guys too, make sure you find that hot tub this weekend, you deserve it.
Title: Re: VITS END
Post by: willieandwinnie on November 07, 2007, 04:06:56 AM
:banghead; :banghead; :banghead;

The rescue squad took Len to Hospital last night. Same thing, double over in pain, never did throw up. Admitted him and started IV and gave pain medication. They did a CAT scan and said blockage. Dr. Paul from Washington Hospital Center called me and said he doesn't think so. His labs came back perfect. No fever, no evaluated white count, kidney is working great.  I guess decisions will be made today about transferring him again. My God, is this ever going to end? I had a $300 gas bill last month, we just cannot afford to keep doing this. My health is starting to take a tole on me, I'm worn out. Please say a prayer that this passes quickly. I don't know what else to do right now. Dr. Paul told me that the first year after transplant is the hardest. I'll post when I know more.

Kathy
Title: Re: VITS END
Post by: paris on November 07, 2007, 05:44:00 AM
I wish so much I lived near you and could physically help you through this time.  You have had so much to deal with. I will keep praying for both of you.   Poor Len, he must think things will never be better and you have got to be totally exhausted. Again, wish I was closer-I could sweep, dust and make dinner!  You need some help. If anyone asks if they can help--say yes!   You need a break! :grouphug;
Title: Re: VITS END
Post by: paddbear0000 on November 07, 2007, 10:07:25 AM
If only I still lived near you guys. I have plenty of free time. I'm so sorry this keeps happening. I hope things settle down (again) soon!  :cuddle;
Title: Re: VITS END
Post by: okarol on November 07, 2007, 11:30:34 AM
 ??? No!
Jeeez I can't believe it Kathy.
 :cuddle;
Title: Re: VITS END
Post by: Psim on November 07, 2007, 11:40:06 AM
I was just reading after being away for a few days -- smiling about Len's weight gain, and your hot tub plans... What a hard hard thing to have him back in the hospital again. I hope they figure it out soon. I'm so glad his transplant is holding up good and strong. Sending you hugs and all my wishes for better news soon. :grouphug;
Title: Re: VITS END
Post by: keefer51 on November 08, 2007, 04:02:00 AM
 :grouphug;
Title: Re: VITS END
Post by: 2_DallasCowboys on November 08, 2007, 06:58:01 AM
So sorry to read of this latest incident, Kathy!

My prayers and thoughts are with all of you- I do wish
there was someone who could offer you a little help,
it would mean so much right now. :grouphug;

Anne
Title: Re: VITS END
Post by: kitkatz on November 08, 2007, 11:12:51 AM
I know how hard it is to have the husband in the hospital. Everything is on your shoulders all of a sudden.  Just a reminder: Remember to take the trash out on trash day.  That is my hardest thing to remember to do!
Title: Re: VITS END
Post by: MyssAnne on November 08, 2007, 11:36:07 AM
I'm so sorry to hear of the lastest setback. Darn it all.  :banghead;  Let us know how he is, and PLEASE,  look after yourself too. I wish there was someone there who could help, darn it. :grouphug;
Title: Re: VITS END
Post by: Black on November 09, 2007, 05:44:27 PM
Sending prayers and good thoughts your way.   :grouphug;
Title: Re: VITS END
Post by: willieandwinnie on November 10, 2007, 01:27:52 PM
HE'S HOME AGAIN,  :bandance;

I brought Len home this afternoon. The put him on a pretty restricted diet for the next couple of weeks. I can deal with that, I think. We have to go to Washington Hospital Center on Tuesday for Clinic because they haven't seen him in a month. All his labs done here were great except for magnesium that they gave him IV and then started pills yesterday evening. We will see ow things go. He is so glad to be home, me too. Thanks for all the prayers and support. I was getting pretty down there for awhile. My life will be pretty busy this week but I'll post when I can. Thanks everyone again for just being here.

Kathy
willieandwinnie
Title: Re: VITS END
Post by: MyssAnne on November 10, 2007, 02:48:29 PM
YAY!!!!!   :clap;  I am so glad he's home, Kathy!!! That has to be such a relief!!! Now, we just need to KEEP him home...no more emergencies!!!! :grouphug;
Title: Re: VITS END
Post by: goofynina on November 10, 2007, 02:59:27 PM
 :bandance; :bandance; That is awesome news Kathy, so glad he is home  :2thumbsup;  I hope and pray that he can start feeling brand new soon  :2thumbsup;  Please keep us posted on his progress, Good Luck and GODSPEED   :cuddle;
Title: Re: VITS END
Post by: Joe Paul on November 10, 2007, 04:37:06 PM
Glad Len is home, maybe you can soon get some rest  :thumbup;
Title: Re: VITS END
Post by: Black on November 10, 2007, 11:23:44 PM
HE'S HOME AGAIN,  :bandance;

I brought Len home this afternoon. The put him on a pretty restricted diet for the next couple of weeks. I can deal with that, I think. ...
Kathy
willieandwinnie

You need to start calling him "yo yo" cause his string is caught in the ER door.  ;D   Glad he is home again.   Maybe both of you can get some rest now and spend some time hugging those Yorkies.  :2thumbsup;

I can't imagine how hard it is to be on a dialysis diet and then add a more restrictive one.  :o  Can he have anything "fattening" so he can try to gain some weight back?
Title: Re: VITS END
Post by: 2_DallasCowboys on November 11, 2007, 03:55:33 AM
Hi,

So very happy to read he is home.  Am praying that
all will be smooth sailing for both of you now!

Anne
Title: Re: VITS END
Post by: Amanda From OZ on November 11, 2007, 06:31:01 AM
I'm so happy to hear len is home! Hope all goes well from here.

Amanda
xxxoo
Title: Re: VITS END
Post by: willieandwinnie on November 18, 2007, 01:32:39 PM
Hi Everyone

I have wanted to update but I get on IHD and read new posts and time gets away from me.

I took Len back to transplant hospital last Tuesday for blood work. The next day the coordinator called and said they were putting Len on 5mg predisone a day. I went and got prescription filled and he took one. The next day she called and said the doctor didn't want him taking it. WTF is that about? I get alittle pissed that you don't see a doctor, only the nurses, doctors only get involved if things start going south. I have to take him again this Tuesday for more labs. His creatinine was 0.06 and his BUN was 13, his protein, magnesium and potassium were also low and they tried to tell me it could be fixed with diet.  :banghead; They can't even remember that he is on a special diet. The nurse was concerned because of all his stomach and intestinal problems that he is dehydrated. He won't drink much because of the 2 hour trip. I packed a cooler last week so we didn't have to stop (not that I can since he is on such a restricted diet), but it work out well for him. He is only taking 1mg of Prograf 2 times a day and the doctor said he's levels are fine. He has been trying to get out and walk around the neighborhood but the weather is starting to turn colder and that won't be possible shortly. When Len was on dialysis he would sleep until 9:30 or 10 everyday. This past week, he has been up before 8. He is still getting really tired and he says his muscles hurt. He weighed 129 this morning, so he is slowly gaining some weight back. We also see GI doctor on Tuesday and I'm hoping he tell me to add some different foods back in. We'll see.

Let me tell you about this horrible diet that he is on. It's low residue, low fiber. I have to grind the chicken or turkey up. He can have fish as long as I don't spice it up much. He has to have white bread, which he can't stand. He can only have string beans, carrots or asparagus tips, only white rice and if a package says it has more then 2 grams of fiber, he can't have it. No fruits with seeds or skin. This is driving me nuts. Next time you go to the grocery store, take a close look at the labels, it is terrible. I keep telling myself and Len that he only had his transplant 10 weeks ago and he had other problems on top of that. I'm hoping by Christmas maybe things will get better.

I just love coming here and reading everyone's stories and the advise given. You guys just don't even know how much I have depended on you this last couple of months. You are my family.

Kathy
willieandwinnie
Title: Re: VITS END
Post by: goofynina on November 18, 2007, 03:24:23 PM
You are my family.


And you are ours  :grouphug;  Although i know it is hard, hang in there my friend, i hope Len gets better soon (and you get some rest too) ;)   Remember, we are always here for you  :waving;
Title: Re: VITS END
Post by: okarol on November 18, 2007, 03:36:39 PM
Kathy,
Thanks for the update - I am happy to hear Len is pretty stable compared to how it was going a few weeks ago!
I think about you two all the time - he's so lucky to have you - and so are we!
 :cuddle;
Title: Re: VITS END
Post by: MyssAnne on November 18, 2007, 03:46:10 PM
Man, you have had such a rough time of it. I sure hope the GI can give you ideas for more food for Les's diet! I'm glad you're coming in here and letting us know how he is, and how YOU are. :grouphug;
Title: Re: VITS END
Post by: Wattle on November 18, 2007, 04:25:36 PM
:grouphug;  Geez... The diet issues are meant to end with a transplant. It must be very frustrating for both of you.

It sounds like Len is doing well so you must be doing something right!   :cuddle;
Title: Re: VITS END
Post by: 2_DallasCowboys on November 19, 2007, 02:43:11 PM
Hi,

Cannot imagine how frustrated you both must be with this whole new
diet issure, and I do hope it will be very temporary.   Will say some
prayers for all of you, including your precious doggies, that all of this
will be resolved very very soon and your Len will be feeling 100%
better, and gaining some wt back.

Anne and Les :waving; :waving;
Title: Re: VITS END
Post by: skyedogrocks on November 20, 2007, 05:14:38 AM
Hi Kathy - Ugh, about the diet situation.  Len is so lucky to have you!!!  Hopefully when things go back to being somewhat normal, you can go and spend a day at the spa and pamper yourself.  You need and deserve it!

Take care!  :cuddle;