Good News...and Bad

[GraphicBass]

Visited with my nephrologist yesterday — my first since starting in-center dialysis about 6 weeks ago.

Good news is that she says I am responding very well. My bloodwork is normal or almost so, clearances are good even using the catheter, and I've gone from 268 pounds to 230 pounds — all of it fluid. We're starting to "challenge" me a bit to get to my dry weight, and I'm tolerating it well. My energy levels are 1000% better, and I'm back to work nearly full-time. And, we're candidates for NxStage home hemo after I get through some cataract surgeries in January and February. And my fistula is "thrilling" along and may be ready to use in January. All in all, not a bad report card, and I'm happy, as is my wife.

The Bad: In my nephrologist's opinion, I'm not eligible for a transplant, due to my other conditions, namely, congestive heart failure and diabetes, plus underlying cardiovascular disease. She believes any transplant procedure will put too much strain on my heart.

Frankly, I'm not sure what I think about this. I had a feeling the other diseases would rear their ugly heads, but kind of hoped I could at least consider transplants.

In some ways, it may be a relief for that option to be off the table, as I can concentrate on being as well as I can on dialysis and committing to being one of those long-term patients I read about, and not worry about transplant committees, testing, fundraising, the wait, etc.

On the other hand, it seems as if it's closing off a potentially life-prolonging option before any type of review process (although I trust my doctor; she's been with me for a long time).

But then, since receiving my CHF diagnosis five years ago, and knowing the mortality rate for people with multi-organ problems (cardiac, pancreas, kidneys) such as myself, I've often felt the clock ticking. One of these things is going to put me down eventually.

Not sure what my point is. Just wanted to say something in a place where there are people who understand what I'm talking about.

gary

[cloud393]

Glad to hear your good news, we all need some once in a while.  As for the bad stuff, who knows what medicine hasin store for the future.
Good things do happen.  I wish you continued good health reports.  Mine have not been very good lately.     

[okarol]

It seems like you'd at least get the opportunity to explore your options with a transplant team. So many people get transplants who seem unlikely candidates and some I am surprised get through it just fine. Since a referral is not required (around here in LA anyway) we let the transplant team determine what course to take. It's been my experience that nephrologists who are not on transplant teams often have a different view of things. And, there are also often varying opinions coming from organ transplant surgeons than there are from nephrologists. And, as was mentioned, things are changing all the time. If it were me, I would explore the options.
The good news is very good and sounds promising for dialysis in the future.

[MooseMom]

I agree with okarol.  It's not really your neph's call.  Your neph may well be correct, but then again, maybe she isn't.  You have every right to at least be evaluated for a transplant.  Take your time, mull it over and make a well considered choice.

Congrats on your good news!  That's fabulous!  It's great that your treatment is actually working to give you better health.   

[MooseMom]

I wish you continued good health reports.  Mine have not been very good lately.     

Oh dear, this sounds ominous.  Are you OK?

[cloud393]

I am doing better, thank you.  It started with a bi-lateral nephrectomy Oct. 1st.  Then I had 3 hospital stays in Nov. ( a totoal of 20 nights).  I went in with uncontrollable stomach pain & vomiting (one time included diarrhea), had every test imaginable and they couldn't find anything wrong with me until the last test, a heart cath.  Now I'm on 2 pills, my heart muscle has weakened, so it's not pumping enough blood thru my body and it doesn't relax like it should.  I don't really know what that all means but will start researching it. So anyway, my labs have not been good, potassium was really high & I never had a problem with it.  Creatinin was really high.  I guess everything was out of control.  I go today for bloodwork so, wish me luck.
Sorry for rambling on your thread GB.  Should have started my own.  Forgive  me.

[galvo]

You're going well, Gary. Congratulations.

I'm at the same place as you re a transplant, and for the same reasons. Bugrit. I've put it out of my mind and, like you, am endeavouring to batttle on the best I can on Dialysis. We're all going to go eventually, some of us earlier than others. It's just how the mop flops. Let's enjoy life to the max while we're still here!

Good luck.

[rsudock]

if u want a transplant Gary then find a transplant center that will consider it don't give up! glad your bloodwork is good!

cloud sorry to hear you are having a rough patch keep on fighting!

xo,
R

[Lillupie]

I dont know the extent of how bad your heart is. A have a friend who has an enlarged heart, heart failure, had a stroke, and he is still listed on the transplant list. He has been listed for a long time. I dont know how tall you are, but would losing weight help at all? If you have diabetes, you could possible, get a kidney/pancreas transplant.
 If you want to get a transplant, you could also get a second oponion. If one center says no, remember it is not in stone. You can go to another center. A friend of mine had to go out of state because noone in her state would do a transplant on her.

Thats good you are feeling good! Keep it up.

Lisa

[GraphicBass]

Thanks, everyone, for your replies.

Sorry I haven't checked back in for a while. We had to make an emergency trip out of state to visit my mother-in-law, who has been on dialysis for six month and now has decided to stop. She's 76 old, has many other health problems, and has never responded well to treatments. We went to see her and say goodbye while she was still aware of everyone. Everyone from that side of the family showed up: children, grandchildren and great--grandchildren — 15 people of assorted ages and sizes. It was a nice way to say goodbye. A couple of difficult days later she slipped into a coma; she passed away last Friday morning about 3 a.m.

And, of course, just a few days after we got back home, we all developed nasty colds from all those germy little kids! Just now getting over it.

I'm going to let the transplant question sit for a few months. I still have to get my fistula in operation. two months worth of cataract surgeries to get through, and get my insurance in order and coordinated. Plenty of time in the spring to start investigating transplants. I'm glad to hear the nephrologist is not the final arbiter. She know me well, and is very good, but this is my life, and I intend to check out all the options before making a decision. I have not consulted with or been evaluated by a transplant team, and I sort of feel that should be the least that I do.

I hope you are feeling better, cloud393. I've had about eight hospitalizations in the last 14 months, while still trying to run a business somewhat full time. It gets wearying.

gary

[galvo]

My sympathies on your M.I.L. passing.

[MooseMom]

You've been through the wars lately, haven't you!

You have plenty of time to consider transplantation and to use this time to get your life in order before going down that path.

[GraphicBass]

Thanks, Galvo. Amen, Moosemom!

g