Here we go again

[Black]

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."

My apologies for quoting the whole post but I think it is so good, and so inspirational that it deserves to be here in its entirety twice.  Thank you, petey.

[paris]

Most of us need words of encouragement and I am always glad to read positive thoughts.     How is Len doing today?  When ever I read about him, I think of his picture at Christmas with the Santa hat!   I hope you both got some rest today.

Petey, keep the good vibes coming.  We need to read about hope, joy and love. I, for one, love your posts.   

[petey]

thanks, paris and black and willieandwinnie -- I'm new here, but when you all get used to me, you'll find that I'm (1) long-winded and (2) optimistic to the max.  Marvin and I know the statistics; we're smart people and we've researched and lived ESRD every waking minute of the last 13 years.  We decided when this all started that we would get up every morning and make a determined decision to be happy and hopeful just for today.  When tomorrow comes, we'll decide to be happy and hopeful again just for the day, and so on, and so on, and so on.  (This was Marvin's idea!)  It's not easy, and sometimes we really have to force it (sometimes we have to "dig deep" to find something to be hopeful about).  But, if we dwelled on the sadness, unfairness, and depressing and sobering statistics of ESRD, we'd be miserable today.  And, what if today's Marvin's last day?  I don't want him to spend it being miserable, and I don't want to live the rest of my life knowing that my last day with him was miserable for me.  If you let me stay around here a little longer, you'll hear me cry, too (I do have my moments when it overwhelms me)...but, today I'm not crying...and, hey, right now, I don't plan on crying tomorrow.  If I get to the point where my positive, bubbly, be-happy attitude sickens you, let me know and I'll keep my mouth shut (but, I'll still be happy --- just somewhere else).
 

[KT0930]

First of all, Petey, keep the encouraging words coming. They're fantastic! (And I totally disagree, I got the best husband, but he's the best for me, and Marvin is the best for you, and Len is the best for W & W.)

Second, Winnie, keep hanging in there, enjoy your day with your book (I just finished mine a few minutes ago), and keep treating Len as well as you are. He's lucky to have you!

Third, Stauffenberg, I believe the gist of what the priest was saying was "better the demons we know than those we don't". We all know what to expect from ESRD. It's not a fun road, it's fraught with all kinds of ups and downs and other illness and frustrations of others not understanding, but we know what we need to do to make it through today happy, and (relatively) healthy.

Lastly, I lived in Havelock for nearly 10 years and worked in downtown New Bern (right across the street from the Sheraton) for two years. I LOVE New Bern. I keep telling my husband that we have to take a trip there, because he loves old towns with lots of history. Thanks for bringing back the good memories!

[petey]

"Better the demons we know than those we don't."  You're right on the money, KT0930!

[willieandwinnie]

Hi Everyone,
 I haven't been on-line for a while. I have been busy taking care of Len and myself. Len was taken to ER again with stomach problems. After he was discharged, I took him to WHC to see tansplant folks. They reduced his Valcyte and added Imuran. The coordinator said that they will start getting rid of some of his drugs within the next month or so. Len's transplant was 5 months ago. The transplant surgeon wanted to try Len on Imuran because of his bowel problems, he said that it is an old drug, but doesn't have the side affects of some of the newer ones. He has been taking it for 2 weeks now, and so far it hasn't bothered him. Thank God! Now, on to me, I have had vertigo so bad that picking my head up made me throw up. The smallest movement of my head, sent the world spinning. Len took me to our GP and he said I have a pretty bad ear infection going and put me on antibiotics and get this, motion sickness pills. I feel better today then I have in weeks. Woke up to about 4 inches of snow and decided to crawl back in bed and sleep. Thanks petey and paris for checking up on me and I have a bunch of catching up to do with my IHD family. Take care everyone. With much Love, Kathy

[KT0930]

Kathy,

I was on Imuran after my first transplant (in 1982, that's how old it is!), and it worked so well for me that I was put back on it after my second in 2002. We had discovered that due to nausea I couldn't tolerate cyclosporine and due to my WBC dropping to below 1000 (should be around 12,000-15,000), I couldn't tolerate cell-cept at the time. I don't recall ever having problems with imuran, and I certainly hope Len continues to have the same experience!

As for the vertigo...uggh. I've had that too, and it's HORRIBLE! When I got it, they also diagnosed an ear infection. I hope you're feeling better - and I guess you are since you're online. Take care of yourselves, and take as many days to crawl back in bed and sleep as you can get! I love those days!!

[okarol]

Hey Kathy,
I am relieved they found the causie of your vertigo! take care - if we had 4 inches of snow I would be hibernating all winter! Best wishes to you both! 

[Joe Paul]

Hoping those pills continue to work for your head. I don't think there anything much worse than being dizzy! Also hoping Len continues to feel better, God Bless you both   

[Romona]

 
I hope you two are feeling better! You have had enough excitement!

[petey]

Time for an update, willieandwinnie...
how's Len?  Is the Imuran still working okay?
How about you?
I've been thinking about you two.

[willieandwinnie]

Ohhhhhhhh petey, Thank you. Len is actually feeling pretty good. We go back to transplant clinic tomorrow. Len weights 143 (up from 123 in September). He is talking about going back to work, but we have to wait and see what Social Security and VA says. He says he is getting bored and his mind is turning to mush. He hasn't worked in 7 years and I'm so afraid he is trying to rush things. I'm so protective of him, almost to the point of compulsive behavior. The Imuran seems to be agreeing with him. We have even been sneaking in some foods that he shouldn't be eating and so far, so good. I need to get him to eye doctor and dentist, he was suppose to go before transplant and doctors wanted us to postpone until he was further out so I'm going to ask tomorrow. I am just so thankful everyday.

I am almost done with medications that GP gave me for ear infection and I am feeling better. Not 100% yet but differently better, still having the dizzies some. Now if I could get my hip and lower back to cooperate, I'd be good to go.

Marsha, how is Marvin? I keep thinking and praying for the both of you. Your Marvin has been through HELL also and it's time to turn that around. When can he get back on transplant list? Is the new pacemaker operating correctly? Hows his appetite? Are you getting your rest? Len says he is going to send me to a day spa just to get me to relax. It is just so hard for me, but you know how that is. Looking forward to hearing from you.

[thegrammalady]

i'm so glad things are going a bit better for you. i haven't been on much since january and as usual am a day late and a dollar short. it will take me quite a while to get through all the posts i've missed. hang in there.

[petey]

Kathy,
The news about Len is great!!!!    It's good to hear that he's putting on weight!  That, to me, is a very good sign.  I know what you mean about being overprotective of the hubby -- I do the same thing with Marvin.  But, maybe Len could work semi-part-time if he feels like it.  A few hours a week may do wonders for his emotional health.  Glad to hear you're sneaking in some off-limits foods...that's not a bad thing.  We have found that a little bit of the "you're-not-supposed-to-have" foods keeps Marvin from craving them -- that would be awful, to want them so badly and not be able to have them.  It sounds like Len is on the way up!  I couldn't be happier!

It's good to hear that you're better, too.  When the "well" one is sick, it makes things so hard.  Make sure you take care of yourself, too.

I think Marvin is getting better each day, although it is a very slow process this time around.  Normally, he bounces right back, but this time, it's taking longer.  He has stopped throwing up (thank goodness!); I think he had to get the antibiotic in his system -- it's a strong antibiotic.  Also, he was full of infection, and that could have been what was making him sick.  He's still losing weight, and I'm not happy with that.  Marvin is a really big guy.  He was about 375 pounds when he got sick with ESRD.  Right before his transplant (2000), he was down to 220 -- the smallest I had ever seen him.  After transplant, he fattened back up to about 275.  Since he went back on dialysis (2003), he's dropped down to about 250 (that's what he weighed on December 1, 2007).  He's now down to 210 which is really, really small for him (he said he hasn't weighed this little since he was in the fifth grade).  He had more energy yesterday than the day before.  I took him to the doctor to get his staples out (38 of them), and he managed pretty good.  We're not getting out of the house much (which is about to drive me crazy) because there's an awful strand of flu going around -- the kind that's not covered by last fall's flu shot.  It's wicked, and I can't let Marvin get it.  Marvin's new pacemaker is working perfectly -- it's about time!

I have a sign for our front door -- and I have used it often -- it says, "Please Do Not Disturb.  Marvin's Resting."  I tape this to the door when he's sleeping -- and sometimes when I just don't feel like facing the world.  Is that awful?  The only places we've been in the last week are to the doctor's office and to the dialysis clinic.  I hope I can go back to work on Friday -- that will be terrific!

[willieandwinnie]

There is a horrible flu bug going around and I have to take Len to WHC tomorrow, not looking forward to that. petey, I still have the Transplant patient, stay away if your sick sign on our front door. I was amazed at how many idiots wanted to show up sick to see him. I would turn them away. We aren't going out either, I'll take Len for car rides but not where there are a lot of people. I'm not taking any chances. He has come to far.

[kidney4traci]

Can't beleive people would try to visit when they are sick!  Hello!!??  He is lucky to have such a great caregiver.