I was waiting to see my nephrologist before posting again, and that happened this afternoon – so here I am.

My nephrologist is a very kind fellow from Bombay, India. He has a soft, calming voice, and a handsome smile. The first time I ever saw him was in October of 2003, as he was doing rounds on my hospital room mate, who was a patient of his. She was a cute LOL, and was painfully swelled up from CHF; she was having an awful time of it. She looked at him with worshiping eyes while he was there, and said: “I love you, Dr. M. You know that, don’t you?” His handsome face turned red, but he just smiled at her, and kept talking to her in a soothing way. I never forgot that. When my own nephrologist became a hospitalist early in 2007, it didn’t take me too long to look this fellow up. Today, I’m really glad I have him.

This afternoon, when he came into the room, he was somber. He told me that he’d been speaking with my primary care physician, and asked if I’d heard from him yet. I told him that I had. He asked me what I thought about what I’d been told … and for me, that’s a bad question. Although I think (sometimes,) I’m not always able to express that verbally. Gimme a keyboard, and I’ll go to town – but please don’t ask me to talk! I’m not sure what I replied, but it was some of the usual drivel I use as a stop-gap when I have a brain freeze. He recognized it for what it was, and took charge of the conversation – to my great relief.

He quietly explained that there are circumstances under which they wouldn’t be overly concerned about a creatinine of 3.8, but that for my situation, it was time to begin making decisions. We discussed both hemodialysis and peritoneal dialysis. He also asked about placing my name on a transplant list, and he looked a little surprised when I told him that I didn’t want to do that. He asked what my reasons were, and I explained as well as I could. This isn’t the right time, but I will blog about that in the near future. It’s something I’ve given a lot of thought to.

By the time the visit was over, we had decided that I would try peritoneal dialysis. When I asked, he explained that it has a higher morbidity for the first month or so, due to a higher incidence of infections, but that afterward it was better, because it wasn’t as hard on the heart. I will be able take care of it myself at home rather than go to the dialysis center, and will be able to retain my independence. He is going to set me up with a nurse who teaches PD, and with a surgeon who will place both a port in my abdomen, and also a fistula in my arm, just in case. I’ve had abdominal surgery, and there’s a question of how well the PD will work because of possible scar tissue.

And now … here is an idea of what my poor docs are up against. *blush* He gave me two orders for lab work, and asked me if I would have one of them done today – to check up on my potassium, since it had been unusually high. There’s a lab right next to his office, so I took care of it right away, on my way out of the building. I then drove to meet my dear friend Joanie at a local restaurant for an early supper. The angel drove all the way down from Bangor – a three hour ride – to see me today. I had my son, Dougie, with me, and I told him: “I’ve just had my lab work, and won’t have any for a few more weeks. This is something I’m not going to get to do much in the near future, so I’m going to cheat and have some cheese fries while I can!” The cheese fries (with bacon, no less) at that particular restaurant are absolutely to die for. I could almost taste them before I even got to the restaurant. So of course … I was a bad girl, and munched big plate of fries. They were gooooooood! >;o)

We came home afterward, and in about an hour, the phone rang. The answering machine caught the call. It was one of the nephrologists telling me that I’d had an abnormal lab result today, and to call right away. *sigh* I kind of gritted my teeth, held my breath, and called. Apparently my potassium was “dangerously high”, and she wanted me to take some Kayexalate immediately. Well, it was a new prescription, and I’d only had it once so far – but that single experience was quite enough for me to feel my gut begin to roil as I thought about the prospect of trying to down some of that nightmarish grit. She said – “How much do they have you taking?”, and I told her that I was supposed to 15 grams every Friday. She said: “No no no! That’s not enough! I want you to take 60 grams!” OY! Do you realize what 60 grams LOOKS like? Worse … do you realize what 60 grams of that stuff goes down like? *ugh!* One sip and you feel like you just landed face first in a pile of sand, 2 sips and your tongue and teeth are wearing fuzzy little sand coats and ties … 3 sips and the stuff is fighting its way back out of your tummy! I must have made a really pathetic whimper, because she went on, urgently, telling me that with my potassium that high, I was in danger of having my “heart stop.” I didn’t say anything to her, but by then I was picturing my plate full of cheese fries … you know, the one I’d eaten after the lab work was done. Ouch! And so, I took my punishment like a good girl, and will dutifully report to the lab in the morning to let the vamps squeeze more of that red stuff from me so that they can find a reason to feed me yet more yucky stuff! ;o)

And to tie things up for now, my personal plans for the next little while are as follows …

I’m going to try to blog about this as it happens. Up until now, I haven’t wanted to do that except for during extraordinary occasions, but this is different, and I want to share. Perhaps we’ll start hearing from others who are going through the same stuff.

Also, there are an awful lot of things going on in my life besides the ESRD. I’ve played my cards pretty close to my chest in the last few years, but I’d like to try to break out of that. There are other adventures that are ongoing, and others that I’m just now beginning, and I would like to share those with you, too.

So – fair warning. Those of you who can’t take the nitty gritty may want to find your reading material elsewhere for a while. There will still be silly eye benders, funny stories, garden photos and more, but there will also be a bit more patient blogging than I’ve been willing to do in the past … and more of the real stuff that’s ongoing in my little part of the world.

Lots of big changes in the wind …

We’ve had some very hot weather for our area in the last week or so. Many of us are not used to it, and even those of us who love the heat (like me! :o) have begun to wilt a bit.

When I began to feel nauseated all of the time a bit over a week ago, I thought that it was the heat getting to me. I tried to keep myself hydrated, and decided to persevere in the garden in spite of being queasy and hot. We just went 3 years without one, and it’s like a little corner of heaven out there.

Yesterday, Doug, my son Darian, and I went up to my Mother-in-Law’s house, and we cleaned out her garage. Some toothy little critters have eaten the wiring in her car over the winter for the last two years, and have also begun to dig holes right through the concrete in one of the garage’s walls! Wow! So we went up there, and sorted through everything. In no time at all, I had to sit down. I managed to get up every now and then and do a little more, but I would almost immediately head back for the stoop. I felt awful leaving Doug and Darian to do the lion’s share of the work, but I just couldn’t help it.

Once we cleaned out the garage, we ran home for a shower, then we all went out to eat together … swinging by the hospital on the way so that I could have some lab work done.

I didn’t think anything more about it until this afternoon, when I listened to the messages which had been left on the phone. There was a message from my primary care physician – the first time I’ve ever heard his voice on the phone. He wanted me to return his call … something to do with the lab work …

I was supposed to see him on Monday – so I wondered what on earth could be so urgent that it would deserve a call.

He didn’t waste any time before satisfying my curiosity. In the 3 weeks since my last lab work, my creatinine had gone from 3.1 to 3.8, and my BUN had gone up to 59. I had gone over the line into stage 5 – ESRD. My GFR is down to 12 from 16. He ended the conversation with “Before you see [the nephrologist] next week, you really should consider agreeing to dialysis. You’d feel a lot better if you did.”

The information is still trying to sink in. No matter how prepared you think you are, you find out that there’s a load of stuff that you’ve never considered before. You also discover that although you knew is was coming sooner than later, having the news actually dumped into your lap dredges up a whole slew of unexpected emotions.

And so, that’s the news for now. I thought my numbers would bounce up and down a bit, but I guess we’re past that stage. I don’t know what comes next, but I should find out more when I see my nephrologist next week. I’ll post again once I have more info.

If anyone knows anything about home dialysis, I’d love the info. Thanks!

The picture at left is what I came back to tonight. The sad thing is – this was the last of the really nice, warm days. The weather’s been heavenly all week, with temperatures in the mid 80’s, and lovely sunshine. Tomorrow, it’s supposed to cool off and thunder. Well, still – I’m happy to be home again!

Right up until my little hospitalist came in to see me today, I didn’t know if they were going to keep me for “more invasive” tests, or let me go. I also didn’t know what the heck it was that had hit me like a ton of bricks on Saturday night, and was still harassing my poor, sore little gut.

We’d been playing with NPO and clear liquids for a couple of days, and the only time I was on top of things was when I was NPO. Clear liquids caused some rather lively and unpleasant problems. Yesterday, I was bemoaning my situation on Pownce, and Dr. Schwab sent me the following footnote from his book:

“We had another mystery patient: she’d undergone routine intestinal surgery, was making a normal recovery, but every time we’d start her on food, she’d vomit.

Back would go the stomach tube, things would proceed to the point of apparent readiness to eat, tube out, feed, vomit, tube in. . . . Finally we asked Dr. Dunphy what he thought was going on. “What are you feeding her?” he asked. Clear liquids. The routine first meal after surgery. Jello, broth. “Give her a steak!” he said.

Gotta be kidding, right? “How would you like to be looking at green jello when you feel crummy? Give her a steak.” We did. She gobbled it up, and went home. When I went into my own practice, I almost never ordered clear liquids post-op.”

Well, I mentioned that to one of the nurses when he said it, and then to another one today … both thought it would be an excellent idea. Someone mentioned it to the doctor, and she approved it! Yes! It wasn’t steak, and it wasn’t even the best tuna salad I’d ever had, but it sure was better than unsalted broth, jello, tea and cranberry juice. So … a resounding thank you to Dr. Schwab!!! He left Pownce abruptly last night, by the way, right after I said that if the doctors decided to fish around in my gut that I wanted him to come and do it! I must have scared him off! ;o)

This afternoon, my hospitalist came in and gave me the good news – it was, indeed, a bacterial infection, and I could go home to continue recovering! Had the cultures not grown any bacteria, they would have looked for inflammatory illnesses next. Since my poor daughter’s been in a hospital in Connecticut since July 1 for Crohn’s, it was a distinct possibility in my case, even at my age.

By the way – for those who’ve been asking … my daughter is being moved to Hartford in the next day or so for surgery. I believe they’re going to do a colostomy. I should have more information on that later …

So I was sent home with instructions, several prescriptions, and lots of well wishes from the staff.

Which leads me to what I really want to write about the most: the staff.

I was on a wing named Dunaway South … which also houses pediatrics. There seemed to be many adults there, though, and so I didn’t feel out of place. It’s my second time on that ward. I want to tell you about the staff, because they were amazing. They went well beyond any call of duty whatsoever, and were so wonderful to be around, that I hated to leave them. In spite of my pain, I spent a disproportionate amount of time hanging onto my poor sore belly because, although it hurt so bad to laugh, I still couldn’t stop. Even with being really sick and in pain, I don’t think I’ve ever had as much sheer fun in a hospital – ever, even when I used to work in one.

There are so many of them that I’d like to name, but I’m terrible with names, and I can’t remember most of them. There are two, though – a nurse and an LNA, who spent a lot of time cracking me up: Lauren and Gail. I don’t know their last names, but I do know that they had wings underneath their scrubs. I wish I could remember the names of the two night nurses I had, because they were great. One of them in particular got me through a very bad episode two nights ago with so much patience and caring that I felt as if I were a little girl being cared for by her Mum. I really wish I could name them all. I feel badly that I can’t.

Another person I have to name …

Yesterday, my care was passed on to a new lady hospitalist, since the one I started with was enjoying some time off. Her name is Jayanthi Wheeler. I was bemused when I heard it – an Indian first name with an English last name. I wondered what she would be like. When she first came into my room, I could see that she definitely was Indian. When she spoke to me, I was delighted to realize that she sounded exactly like a female version of Vijay! She was very confident, and laid things out for me very well. She left me with no questions, no doubts, and with a feeling of confidence in her capabilities.

Once she was done, I asked her where she was from … “India,” she replied. Trying to remember the things which Vijay has taught me, I asked her: “So which is it? Should I greet you with namaste? Or maybe with vanakkum?” Her eyes lit up when she heard “vanakkum.” What a delight! She speaks Tamil, just like Vijay! What followed was an intensely interesting conversation … which could have continued for hours, as far as I was concerned!

As soon as she left, I got on GTalk and drummed up Vijay, and told him all about her. He informed me that her name, Jayanthi, means the same as his: Victory. He also told me that she went to the best medical school in southern India.

Today, my visit with Dr. Wheeler was briefer, but just as pleasant. She’s telling me that I should get into a program that sends people to India to help with English reading. Apparently, expenses are paid … and you stay for several months. People … I am going to look into that!!! It would rock to visit India, and I’m a frustrated teacher anyway! :o)

Although I really like my new primary care doc, I can’t help but wish that Dr. Wheeler was in private practice …

And so – here I am at camp! When I walked in, the sink was full of dishes, there were paper towels on the floor, my plants were withering, the stove top was covered with food, the table hadn’t been washed since I left … in short – the camp was an unmitigated disaster. Leave it to three men … !!! So, tomorrow morning, I take my final in Connectivity with Lab – a three and a half hour test, and then I get to … you guessed it … clean. *sigh*

Gee, I wonder if maybe I can work myself into a relapse … >;o) (just kidding!!!)

It feels so good to be loved. Ahhh yes. These kind people must have taken a liking to me, because I’m stillllllllll heeeeeeere … *rolls eyes*

Really hoping to get sprung today. As grateful I am to everyone – because this time I seriously did hit solid gold with each and every nurse and LNA … and hospitalist (and that one’s really saying something, coming from me!) … I still am yearning for a shower with soap that doesn’t make me look like I poured baby oil on my head, and FOOD that I can identify when my eyes are closed!

I’d also like to motivate around my environment without a little pole following me everyplace …

Anyway … I thought I would take the opportunity to share a few things that I would like to say to people – but am too chicken. I’m thankful that none of my own caregivers or hospitalists deserved to hear any of this, but there were so many people in and out of here who did need to hear it …

1) Do you have any idea what “Eau de Bête Puante” will do for a queasy stomach? What I wrote actually means: “Skunk Water” … believe me, that’s what even the most expensive perfume or after shave can smell like to someone who’s sick.

And don’t think you can “get away” with just a little dab … it’s like thinking you can be “just a little pregnant.”

I had people walk past my door who were so odorous that I could literally taste them long after they’d passed.

While I’m at it – those of you in food service should think about this advice too. If you have a habit of taking French Showers before work, or are a bit too fond of your current perfume, you could be causing your diners to wonder what the heck was put in the food … *cough*

2) Bursting into a room and shouting “Good morning!” before your patient is awake is not, I repeat: NOT, conducive to lowering blood pressures!

3) Long, loud cell phone conversations outside of patient’s rooms are not only TMI, they’re also unnecessarily disturbing if a patient is trying to rest.

4) Along the same lines … shouted socializations across a ward’s hallway are probably the biggest offenders when it comes to patients not being able to nap. When I was a student nurse, (many moons ago) we were taught silence in the hallways, and lowered voices at the nurse’s station. I don’t think they’re teaching people that anymore.

I’ve heard shouted “how are ya’s” as early as 5 AM, and as late as 11 PM, and I’ve heard dinner arrangements being made by people at opposite ends of the hallway. At this moment, I’m listening (unintentionally, but unavoidably) to a conversation about hospital policy just a few feet away from my door.

And so … that’s my contribution to the blogheap of posts across the medical blogosphere for today. Right from the horse’s mouth, if you will.

Hopefully, my next post will tie up my experiences here for this time around, and put the matter to rest permanently. Then I want to deal with the awards and meme’s I have lined up and waiting for me …

So … I’m going to stand beside my bed in my little skid-proof footies, and start clicking my heels together as I repeat: “There’s no place like home …”