Here we go again

[willieandwinnie]

I'm not exactly with it today. Yesterday afternoon I had to call the rescue squad for Len. He was doubled over in abdominal pain again. They took their time getting him to the hospital because the ambulance bounced him around so much they felt sorry for him. They didn't waste any time in the ER (doctor's know Len's history), they immediately did lab work and started an IV to give him fluids and pain medication (he hadn't had anything to drink for hours). The did chest and abdominal X-Rays that didn't show anything definitive  , they called in the GP doctor and he said they could admit him or send him home on pain meds and more strict diet (it can't get much more restricted), and rest. Len opted for home. He was pretty drugged and went to sleep as soon as we got home. This morning I had to call WHC transplant because we were suppose to be there this morning and also called the GP for follow-up appointment. GP said leave food alone and just keep up the fluids and he will see Len tomorrow, transplant clinic wanted recent copy of labs which I got a copy of, he's creat is 0.09 and BUN is 15. Everyone seemed happy with that. Len is napping right now and I'm just pooped. I didn't sleep well at all last night, listening for God knows what. I think we did Len's stomach in, eating stuff he really shouldn't have or have much of. It just so hard that he was on dialysis diet and bowel diet for so long we thought that with a new kidney he could have some things he really missed. I believe that is not going to be his case. The ER doctor really studied Len's X-Rays and was just amazed how Len is put together, he spent quite a bit of time with us and put my mind at ease. He said that we will probably have many of these bumps and we will have to really pay attention to how Len feels.

I'm sorry this is so long and really boring but I turn to everyone of you for emotional support because you can relate to my frustrations. I'd be lost without you. I keep updating.

[okarol]

  Sorry it's been so tough, glad Len is home though!

[Sluff]

Glad Len is doing better. I hope you can rest easier now.

[xtrememoosetrax]

That sounds VERY scary, in addition to being exhausting!  Frustrating too -- the diet issue sounds rough. 

Hang in there, okay?  This means BOTH of you!  We'll be thinking good thoughts about you and looking forward to updates on how you guys are doing.

[Romona]

The first year is full of these bumps. It is crazy not knowing what is going on. Len has additional challenges most of us don't. I have pain that no one knows what is happening. My theory is the long term use of many of the transplant drugs they are rough on stomachs and digestive systems. Hang in there you two. You have more than your share. 

[Ang]

hang  in  there   

[paris]

I am so sorry. It seems like Len just can't catch a break. How is his attitude about all of this?  And how are you feeling? I know you are exhausted and full of worry. I hope the road gets smoother soon.  Sending good wishes to both of you

[KT0930]

About five days after my second transplant, my mom made one of my favorite meals for me, which had been restricted due to having bacon and butter in it. The next day I was back in the hospital. It's entirely possible that his body just is not ready for some of the richer foods that have been missing from his diet for so long. Give it time, everything in moderation, and take care of yourselves. Both of you!

[Wattle]

 

[Joe Paul]

Sorry to hear about the problems Len is having. Glad he is home with you though, I hope things improve for him and you 

[2_DallasCowboys]

So sorry to read about Len's problem!  I cannot
imagine how tired and frustrated you must feel.
I hope he is feeling much better, and you only
have smooth sailing from here on!

Anne

[Black]

That was not long and not boring!  That's what we are here for.    You both had a horribly stressful time and you need support - both of you!  I hope Len gets better soon and you get some sound sleep.  Is there anyone that come occasionally to keep and ear open for Len and his needs all night so you can sleep soundly? Sound sleep works wonders and you need a break so you can be there for him.   

[willieandwinnie]

Thanks everyone. It has been a nightmare since transplant. He was actually more stable on dialysis. I keep telling him that we have to take baby steps and just go slow at adding stuff to his diet. We have an appointment with GP this afternoon and wouldn't you know it, they are calling for snow to start.  Coming home from the hospital the other night, it was my 3 worst things, dark, raining and fog. Now SNOW. What next? All the doctors involved are happy with he's labs and that he has gained almost 20 pounds since transplant but the stomach and bowel issues keep rearing their ugly heads. Black, it wouldn't do any good to have anyone come and stay because I would be up at the sound of a pin dropping. I slept better last night but still with an ear and an eye opened. Len keeps telling me not to worry so much, but it is easier said then done. I have been doing this now for 8 years this February and old habits die hard. IT WILL GET BETTER.  I'll let you know what the doctor says this afternoon. Take care everybody.

[Sluff]

Hang in there you two! 

[petey]

w&w,
I know EXACTLY what you're talking about.  With my hubby, it was 5 and a half years of dialysis and waiting for a transplant, then three years with a transplant, and now the last 4 and a half years on dialysis again and waiting for a transplant again.  Yes, sweetie, it does get better -- or at least it got easier for me.  Hang in there!  The first month Marvin was on dialysis (back in 1995), I thought, "We can't live like this for another month!"  This March, that will be 13 YEARS ago.

I, too, sleep with one eye and one ear open.  And, I wouldn't let anyone else come in and listen out for him, either.  He might need ME.  I constantly "remind" him to do this or not do that where his health is concerned (he sometimes uses the word "nag" -- affectionately ).  I argue with nurses, doctors, techs, social workers, and anybody else I feel like is not giving him everything he needs and deserves.  I am his wife, his lover, his best friend -- and also his #1 fan, his #1 advocate, his dialysis partner (home hemo -- NxStage), and his protector.  I have worried about him, cried over his situation (not in his presence), and prayed for him  -- almost non-stop for the last 13 years.

The thing I've finally accepted is that with ESRD patients, it's a lifetime thing.  You're never cured.  You may trade one treatment (dialysis) for another (transplantation), but each comes with its own set of problems, complications, hurdles, and even blessings.  I don't mean for this to sound like "doom and gloom" because we live a very upbeat, happy, optimistic life.  Soon after Marvin's diagnosis in 1995, a chaplain visited us in the hospital.  We were stunned (it happened quickly and with no warning -- he worked one day and everything was fine and four days later he was on dialysis), overwhelmed, and feeling sorry for ourselves (he was 39 and I was 32 -- we were so young and so scared!).  This chaplain said this to us, "If every person in this world were at the same church and each was instructed to go to the altar and lay their troubles down and then pick up another set of troubles to take back with them and live with, 99 percent of people would look over the troubles other people have to live with and then pick back up their OWN troubles."

I have thought of that many, many times, and it has gotten me through many times of crisis.  Looking around at what other people live with, I'll keep our burdens.  I'm not glad that Marvin is on dialysis and waiting for a kidney transplant, but I am glad it's a kidney he's waiting for and not a heart or liver or lung.  He probably wouldn't have lived 13 years waiting for another one of these organs.  I'm not glad that Marvin has ESRD, but I am glad that he doesn't have terminal cancer.  I'm not glad that the doctor said the average wait time for an O+ kidney transplant is 6 years in NC, but I am glad that a doctor hasn't said, "You only have xxx months to live."

All I can say to you is, "Chin up.  Shoulders back.  This, too, shall pass.  Grab a 'cat nap' when you can.  Ask the doctor lots of questions.  Know everything that's going on (insist if you have to).  Hang on!  Hang on!  Hang on!  And...EVERY TIME you get the chance, give Len a kiss, a hug, a hand squeeze, a wink, or a loving pat on the arm (a kiss blown across a people-filled room is good, too).  You can do this.  You can get through it."

[KT0930]

The thing I've finally accepted is that with ESRD patients, it's a lifetime thing.  You're never cured.  You may trade one treatment (dialysis) for another (transplantation), but each comes with its own set of problems, complications, hurdles, and even blessings.  I don't mean for this to sound like "doom and gloom" because we live a very upbeat, happy, optimistic life.  Soon after Marvin's diagnosis in 1995, a chaplain visited us in the hospital.  We were stunned (it happened quickly and with no warning -- he worked one day and everything was fine and four days later he was on dialysis), overwhelmed, and feeling sorry for ourselves (he was 39 and I was 32 -- we were so young and so scared!).  This chaplain said this to us, "If every person in this world were at the same church and each was instructed to go to the altar and lay their troubles down and then pick up another set of troubles to take back with them and live with, 99 percent of people would look over the troubles other people have to live with and then pick back up their OWN troubles."

I have thought of that many, many times, and it has gotten me through many times of crisis.  Looking around at what other people live with, I'll keep our burdens.  I'm not glad that Marvin is on dialysis and waiting for a kidney transplant, but I am glad it's a kidney he's waiting for and not a heart or liver or lung.  He probably wouldn't have lived 13 years waiting for another one of these organs.  I'm not glad that Marvin has ESRD, but I am glad that he doesn't have terminal cancer.  I'm not glad that the doctor said the average wait time for an O+ kidney transplant is 6 years in NC, but I am glad that a doctor hasn't said, "You only have xxx months to live."

All I can say to you is, "Chin up.  Shoulders back.  This, too, shall pass.  Grab a 'cat nap' when you can.  Ask the doctor lots of questions.  Know everything that's going on (insist if you have to).  Hang on!  Hang on!  Hang on!  And...EVERY TIME you get the chance, give Len a kiss, a hug, a hand squeeze, a wink, or a loving pat on the arm (a kiss blown across a people-filled room is good, too).  You can do this.  You can get through it."

Great words to remember and live by!

[Sluff]

petey, I believe that is one of the best posts I've ever read. 

[willieandwinnie]

petey, I'm with Sluff, that has got to be one of the best post I have ever read.  I'll try and remember your words when I am in one of my moods. Can't promise it will make things better but it sure will help me emotionally. Thanks so much, I don't feel so alone anymore. 

[okarol]

  well said petey!

You ROCK! 

[paris]

Petey- your words were wonderful. Absolutely beautiful.  The chaplain's words were perfect.  Thanks for sharing--I think it helped all of us!  BTW, where in NC? I am in Raleigh.

[petey]

willieandwinnie -- I remembered you and Len when I said my prayers last night, and I've thought about you two all day long.  How's Len today?  How about you -- you hanging in there?

paris -- We live in southeastern NC about half-way between Fayetteville and Wilmington and about 25 miles from the SC line.  Marvin's transplant center is Duke Hospital in Durham, NC (about a three-hour drive for us).  I've been through Raleigh too many damn times on my way to Duke (I go up I-95 and then over I-40 to get to Hwy 147 and into Duke).  I hate it when I get to that "Raleigh -- next 9 interchanges" sign because I know the traffic is going to get horrific.  But, the next time I go through there, I'll honk and think of you.  (Please say you're a STATE fan -- I don't think I could stand it if you were a Carolina fan!)

[willieandwinnie]

Thanks petey for the prayers. Len is still having stomach issues today. I called Washington Hospital Center transplant coordinator to reschedule his appointment and she said that his labs look great and we can wait until next Thursday to see her. She said maybe with a couple more days of rest it will ease up. She told me that Len is on the lowest dose of rejection medication of all her patients. She said maybe it is the bactrim or the double dose of valcyte that is causing him problems, but she said it is too soon to stop them since he tested positive for CMV. She said to keep food bland and not too much at one time. I didn't do much today except gather tax paperwork that absolutely gives me a headache. Tomorrow, they are calling for snow so I think I might curl up with a book and not do much of anything. 

How far are you from New Bern? We have some great friends there. You have long drive to your hospital too. Take gave and tell Marvin I'm praying for another transplant, SOON.

[stauffenberg]

With all due respect for the clergy, I think those words of advice are utterly silly!  Whether we would exchange our problems with those burdening other people depends on where our problems lie on the distribution of problems throughout the population.  If they are worse than the statistical average, we would be advised to bear someone else's burdens.  If they are less bad than the average, we should be happy we don't have the problems of other people.

With renal failure, if you try to explain your problems to healthy people you will find that they cannot even believe that you have to endure all that you do, because your problems are so much worse than the average burden that the typical person finds them inconceivable.  Given that endstage renal failure is one of the worst chronic diseases known, and given that only one person out of 1000 has endstage renal failure, to cite the clergyman's own example against him, if you went up to the altar with 99 other people, the odds are ten to one that no one else would have renal failure except you, so given the uniquely bad quality of the life of a renal patient (20% die by voluntarily discontinuing dialysis: in what other group besides Kamakazie pilots do you find such a high suicide rate?), you are almost undoubtedly the worst off of the entire group of 100 people.  So take anyone else's problems but your own and you are almost guaranteed to be better off -- which is not something anyone else can say!

[petey]

willieandwinnie -- I think you should, by all means, curl up with a good book and watch the snow fall -- wish I could (just the book part, though, you can keep the snow).  Hey, Len's labs look good!  We'll take that as a positive in this recent sea of not-so-good stomach issues.  Wonder if anything over-the-counter would help??  I should buy stock in Kaopectate as much as Marvin takes it!  The idea of bland, little meals/snacks sounds like it might help, too.  If Len's like Marvin was after his transplant, he wanted to do all the "normal" eating and drinking (non-alcoholic) -- as well as activity -- quickly after he was post-transplant, and we had to step back and slow down until his body chemistry caught back up.    Rice is a good bland food, and Marvin ate lots of that post-transplant.  He also ate grits -- bland, too (but, that's a southern thing and it might not appeal to Len).  It's a weird coincidence that you should ask about New Bern.  We're actually about an hour and a half from there, but that's where I was born!  I lived there for six weeks and then my dad was transferred (U.S. Coast Guard).  We moved back to NC when I was 16 (near Charlotte), and I moved down in the southern part of the state five years later when I met Marvin.  Been here ever since -- and will be until I die.  Thanks for the wish you sent to Marvin  It's good to have someone else know what we're going through.

stauffenberg -- I think that a part of what the chaplain was trying to say to us was not that taking a set of burdens at that make-believe altar was like picking out fruit in the grocery store -- this one's bigger, that one's riper, this one is less bruised, etc.  I think he was saying partly, "You know your burdens.  You've learned what it takes to deal with your burdens -- not that you like them but that you're at least...somewhat...comfortable dealing with them."  It may have been silly, but it gave us great solace.  To say that you're statistically better off to take anyone else's burdens because you're the 1 out of 1000 who has renal failure does not necessarily make sense to me.  To me, renal failure (and all the stuff that comes with it) isn't the worst "problem" or "burden" to have to live with. Marvin says that ESRD is not easy by any stretch of the imagination but it's not the worst thing that could have happened to him.  Compared to all the other husbands in the world, I got the best -- renal failure and all (I think this -- some of the other ladies on IHD may take issue with that statement).  I wouldn't trade him for any other man -- even the healthiest one on the earth.  I think the chaplain was saying, "We all have have burdens, and when you look around, you realize that.  Yours are yours, and when you learn to live with the ones you got, you realize that it could have been worse."  Do I think there's anything worse than living with renal failure?  Yep, I sure do, and the BIGGEST one there is living without Marvin.   And, I don't agree with your statement that renal patients have  a "uniquely bad quality of life."  Marvin has a uniquely bad quality of HEALTH, but, he has a GREAT quality of life and I do, too.   When the chaplain said those words to us, he obviously knew that we were scared, overwhelmed, and about as low emotionally as a couple could get.  He didn't want us to think that we were on the low end of the population's distribution of problems (even if we were, he didn't want us to think that), and he didn't want us to think that we were the "worst off of an entire group of 100 people" (even if we were).  He wanted us to look for the positive, try to find some kind of "silver lining," see ourselves as fortunate for what we did have (instead of unfortunate for what we didn't have).  He wanted us to learn to cope with our situation even if it meant convincing us that there are others in worse shape than we are.  That's what I think he wanted, and that's what we did.  Silly?  Maybe.  Statistically incorrect?  Probably.  But, at one of the darkest moments of my life, it gave me hope.  I shared that story with willieandwinnie because I wanted her to feel as positive and fortunate to have Len (in his current health situation and crisis) as I feel to have Marvin.  I wanted to share my "hope" with her.  Am I so optimistically positive that I'm repulsive?  Maybe, but that's how I get through this extremely difficult journey.  We do what we have to.  To each his own. 

[willieandwinnie]

Thanks petey  I haven't curled up with my book yet, but it is snowing. I received Len's Valcyte medication by Fedex a few minutes ago and was reading the sheet they sent with it and low and behold the number one side effect is stomach pain They upped his dose from 450 mg once a day to 900 mg once a day because of the CMV positive test that were done back in October. I have a bunch of questions for transplant doctor next Thursday. I want Len tested again, since he showed no signs of CMV. I hate the thought of him being on a bunch of pills that are causing him more harm then good.

"You said that Marvin ate grits -- bland, too (but, that's a southern thing and it might not appeal to Len)." Len is from Florida and loves grits. I'll try giving him some of the tomorrow for breakfast. Thanks.

I love New Bern, it is such a different pace from here. People are a lot more friendly too.

stauffenberg, this is just my  worth, I have been through so much with my husband and just to hear comforting words and hearing from someone else that has been through tough times is reassuring to me and does give me hope for a brighter future.

Thanks petey, your words mean more then you know.