Sunday me blog - what's the story?

By Bill Peckham

This is an overdue post about what is going on with me and this blog. As I have mentioned I have had a high hemoglobin this year without taking any epo. In the last month and a half my Hgb has gone above 16 which led, on a half dozen occasions, to me dumping my blood circuit after dialysis instead of rinsing back. It turns out that having a high Hgb can feel a lot like having a low Hgb. Most dialyzors can guess their Hgb after a few years of CKD5 anemia – I usually can correctly guess if my Hgb is 13 or 12. It turns out a Hgb of 16.7 feels to me just like a Hgb of 10 or 11. This year I've found that the less energy I have, the higher my Hgb.

I don't know why that is the case but really since March I have not had the level of energy I usually have and want. There were tests and long story short there appears to be a renal carcinoma on my left kidney. This diagnosis was made in mid-May. I had an emotional reaction to the idea of having cancer. No one wants to hear that word but at this point the tumor is small – about an inch around – so it is fortunate that it produced epo otherwise it could have grown undetected for a long time.

On top of this at some point I picked up a virus. The Thursday before Memorial Day weekend NKC had their annual Breakfast of Hope fundraiser and one of my guests was sick the next day and through the weekend (I didn't find this out until a week later). On Monday my Mom and I both got sick (my Mom came out for the Breakfast; we had planned to go for a road trip but we ended up staying in the Seattle area), first with diarrhea and vomiting, which we blamed on a milkshake we shared one day at lunch. By the next weekend I had a fever, chills, still with the D & V and even now, a week later, I have a cough/congestion and general fatigue.

(Obviously the thought that it was the H1N1 virus has crossed my mind. I have been very disappointed by the administration's response to the spread of H1N1; I am very worried about what the spread of H1N1 means for this Fall but there is only so much I can process at one time. They no longer test for the virus so there is no way to know. Whatever I had (have) it was (is) unpleasant). I had my blood cultured for a bacterial infection, it turned up negative, but a high white count triggered a course of IV antibiotics, which will continue M-W-F next week. I think I should have been on antivirals but I'm on antibiotics - go figure.

That's the background; here's the situation going forward. Throughout this period – from mid-May until now – I have been trying to organize having my kidney taken out. This is where I have failed. I still don't have a date for the surgery. However the process is supposed to work I haven't been able to get it done which is depressing and stressful. I can tell that people around me - friends, family, kidney center staff, my docs - are doubting my ability to function on my own. Suggestions to go to the ER or switch to incenter dialysis wouldn't be made if I had a spouse or lived with family. I can't say how this process would have been different if I had had a spouse to browbeat docs into doing their job. Maybe I would have already had the kidney out, which would have been my preference, but what can I say? Who knows? If I had wheels I'd be a wagon.

I'm single. I live alone. I don't like asking for help. This is not a new thing.

Now here it is June 7th, my best guess is that I'll have the surgery in July. There will be two surgeons – one to take out my left kidney and one to take out my gallbladder (the CAT scan showed gallstones which is an "as long as you're in there take care of it" sort of thing). They can take samples of proximate lymph nodes but the lymph node(s) that look sketchy on the CAT scan are not easily accessible. Bottom line it will depend on the pathology results what next steps are taken.

As far as DSEN, I don't know where this is going either. There is a lot going on policy-wise. Plenty to write about, as always but the provision of dialysis has never seemed so fraught with change. Come October the framework under which I've been writing will change, I'll no longer have an official advocacy role in the industry. This blog has not been a personal journal and I don't want to turn it into a day by day account of my frustration with and/or inability to get the care I need.

But I know people want to know what's going on and how they can help. I think this is just going to be something I have to muddle through and I'll do the best I can. I have to pick and choose how to spend my energy - I make those choices as best I can - but spending a lot of time talking about it isn't how I want to use what energy I have. I'll comment to this post as things progress, respond to comments here or via email as best I can, decide my future one day at a time and hope things work themselves out.

Comments

[Steve Weed]

Ugh. Thanks for putting it out there.

I love how professional your site is... first time visitor. Drop me a line... I'm getting a new resource website prepared and would love input.

Cheers

[kathy alter]

You're certainly in my thoughts, Bill.

[julie adams]

Oh Bill, I am sorry you are facing these challenges, and I wish you the best. We all love you -Glitter

[Willowtreewren]

Hi, Bill,
I had been wondering where you were. I hope you are back up to 100% soon and can get this surgery behind you.

Aleta

[Ross Fine]

Bill, my thoughts and prayers are with you.

God Bless

Ross Fine

[Syrenka]

Just wanted to let you know that I'm thinking of you, Bill. Thanks for sharing what's going on. You have such a strong, independent spirit and you are always very professional. I appreciate you going outside your conmfort zone a little to share something personal.

All the best,
Syrenka

[jbeany]

Sending you positive thoughts, Bill.
jbeany

[Bill Peckham]

Thank you all for all the good wishes and the support that I feel. The wheels are turning and it now looks like I will I have the kidney removed on July 6th. My preference is to not remove the gallbladder since I am non-symptomatic and am not seeking a transplant. If I was looking to get a transplant I would have it removed since complications from gallstones can be more severe under immunosuppression.

I'm seeing the gallbladder specialist a week from Wednesday and unless she is very persuasive with convincing data I'll leave the gallbladder for another day. Taking out just the kidney keeps the process as simple as possible and hopefully will lead to the shortest recovery period.

I look forward to returning to my previous normal as soon as possible. There is a lot of reading and writing to do.

[Peter Raffa]

Hey Bill,

I certainly hope all goes well with your surgery. It was great seeing you and your Mom at the BOH. Sorry to hear about the virus on top of everything else. THinking positive thoughts for you always. Keep in touch and take care!!

Always, Peter