I’d been calling Dr. F, the local nephrologist, since Tuesday to follow up on the results of the biopsy. Of course I wanted to see the report, but Dr. A in Pittsburgh was very anxious to see the results. But like everything else in this battle, nothing comes easily. On Wednesday, I was told the report was in the doctor’s inbox but she hadn’t read it yet so they couldn’t/wouldn’t release it to me or to Dr. A. I asked if Dr. F was in that day to read the report. “I’m not sure if she’s in today or not.”
Really? It’s like a four- or five- person office. With two docs. One of whom is female. Doesn’t seem like it would be too terribly difficult to know if the doctor was actually working in the office that day. Maybe that’s just me.
So, while each day Dr. A was asking me about the report (as well as calling Dr. F’s office herself), I just had to wait.
Friday morning I had a routine appointment at the hematology lab. As I suspected, my hemoglobin was low (9.3) so I was given an Aranesp shot. The pharmacist upped the dose to 80 mg since I haven’t been responding as well as I had been in the past. The nurse reviewed my history, including the hospitalization from September, and asked what was going on with my health status because everything just diminished so rapidly. But I didn’t have any answers. I still wonder if I had some sort of bug, stomach flu, or something that kicked off this progression of the kidney disease. Or did the kidney disease itself progress, causing worsening of the other symptoms? Who knows. I mean, if I didn’t have kidney disease, I would have just chalked it up to being sick, getting better, and moving on. But the timing of everything seemed more than coincidental.
Shortly after the lab appointment, I had a video visit with Dr. F—to FINALLY go over the biopsy results.
Not good news.
The scarring in my kidneys has progressed dramatically, to the point where they are at least 60% scarred. Scarring is permanent. She said she did not feel that any further treatment would be beneficial but that of course she would defer to Dr. A in Pittsburgh. But she said typically with this level of scarring, throwing more drugs into my system is counterproductive. That leaves dialysis.
She asked if I was ready to get more information on this now or if I wanted to wait a while to process it all. I said I wanted the information NOW. I need to get an understanding of what I’m in for. I also told her that because of my age and my need to work, I want to do home dialysis. She said I would be a great candidate for peritoneal dialysis (the one done through the stomach) and would arrange for a nurse from the dialysis center to call me to set up an appointment. (The nurse did call me three times on Friday but for whatever reason, I couldn’t hear her or she couldn’t hear me. I called her again in the afternoon but didn’t hear back.)
She said she’s not saying I have to go on dialysis immediately. She said they look at the numbers, the kidney markers, but also how I’m feeling and how I’m doing. She said it could be six months or even a year before I need to go on dialysis, or it could be as soon as a month. It just depends on how or if my system responds.
The only thing she changed at the moment was the diuretic I’m on. She’s very concerned (as am I) with the accumulation of fluid in my system as well as the effect it’s having on my blood pressure. Hopefully the stronger diuretic will drain off the bulk of the fluid, thereby decreasing my blood pressure.
I am also hopeful that perhaps I can get off the prednisone (as I don’t believe it’s having the desired effect anymore) which should also decrease the fluid accumulation. This decision will be left up to Dr. A.
Speaking of… I asked Dr. F to PLEASE fax the results over to Dr. A as soon as we were done with the appointment, which was about 11:45. I messaged Dr. A with the basics… more scarring, perhaps nothing more to be done, will wait to hear from her. At 4:00 she messaged back that she STILL hadn’t gotten the report faxed to her.
I. Was. Pissed.
I called Dr. F’s office and was told by the appointment clerk that they’ve “been busy seeing patients all day and haven’t had the time to fax it yet.” Really? It’s a FAX. It’s not brain surgery. I’d been calling for four days. They KNEW it was urgent. Dr. F knew it was urgent. And now it’s 6:00 PM eastern time so clearly Dr. A wouldn’t be getting the report before Monday. But there was nothing I could do about it but wait. You think I’d be used to waiting by now. I’m not.
When I messaged Dr. A, I said that of course I would leave it to her judgment if trying the next chemo drug was still an option. She’s aggressive so I think if there is any chance for improvement, she’ll recommend it. But I also feel she’s a realist so she’ll be straight up with me if there’s not. And I’ll do what she recommends, including the chemotherapy, even if it’s a relatively small chance for success.
And if that’s no longer an option for me, and I’m left with only dialysis, so be it. I am less daunted by this possibility than I was a few weeks ago because I feel so shitty right now. I need to feel better. I can’t function like this. It’s not sustainable, mentally or physiologically. I have to go back to clinic Monday. I don’t even know how that’s going to work.
So yesterday after getting all this news, I felt okay about it. It obviously isn’t the news I want but I am at least resigned to it because I just need to feel better. I had to break the news to my mom, which is always a difficult thing, but she handled it well because she wants me to feel better too. I’m sure it’s been so hard on her (and of course Kyle too) to have to sit by and watch me going downhill like this. I’m sure it’s an incredibly helpless feeling.
I know I will have my ups and downs with all this. I’m not this “zen” person who’s just going to say, “Well, shit just happens. Deal with it.” I know this to be true from things that have happened to others in my life, but it doesn’t mean I’m just programmed to absorb it. But at some point I’ll get there because there just won’t be any other option.
So for the time being, I’ll wait (again) to hear back from Dr. A to see what she thinks the next step should be, and I’ll wait to hear from the dialysis nurse, and I’ll wait to see if the new meds are going to help. My favorite pastime.
Semi-funny story: When I was at my mom’s house yesterday, I made the critical mistake of sitting on the floor so I could pet my dog. I completely forgot about my inability to get back up with these legs that feel like they weigh 100 pounds each. Oh my god. It was pretty humorous as I crawled across the floor to the couch, hoisted my big self up there, and finally got up off the floor. I think I scored a 2 on grace but a 7.5 on execution. Note to self: let the dog come up on the couch next time instead of my sitting on the floor.