Friday, May 9, 2008

Not the Answer I Was Looking For

Yesterday was my appointment with the plastic surgeon Dr. Bray and also with my nephrologist Dr. Richardson.

The bad news started the moment I stepped up to the secretary at Dr. Bray's office. I presented my hospital card and my health card while telling her that I had an appointment at 10am. She fiddled around with her computer, then blankly answered "your appointment is at 1:00pm". I told her that I was told it was at 10am, and she said I was mistaken. Untrue. When Dr. Bray's office called my house to inform me of this appointment, I wasn't able to answer the phone. It was late in the morning, and I was in the middle of taking myself off of my very first home dialysis. Rose, my nurse, answered the phone for me. She took a message and wrote it down for me and even repeated the information. I remember her saying 10am...and that aside, she wrote it down. Perhaps the secretary who had called my house was mistaken, but I certainly know that I wasn't.

"Well it'll be the doctor's choice as to whether or not he can see you earlier."

"Well, can you tell the doctor that I have another appointment at 1pm at another hospital?"

"It'll be the doctor's choice as to whether or not he can see you earlier. Please have a seat."

I bit my lip, picked my unnecessarily large purse up off the counter, and sauntered on over to an empty seat. I began to organize my dialysis log sheets in preparation for my next appointment when I was called in. It had only been about 10 minutes. I was thankful that I would have to sit in that waiting room for 3 hours.

I was escorted into another room where I waited anothe 10-15 minutes. The first doctor that came in was not Dr. Bray. It was a female doctor who's name escapes me at the moment. We discussed my concerns with my stomach and she asked me to stand up so she could look at it. She drew a fairly accurate sketch of my stomach in the file sitting on the desk. She also asked me if I did a lot of sit ups. I told her that I honestly hadn't. She asked me to lie down and flex my stomach as she felt around. My stomach muscles are still pretty tight. She told me that she'd be back with Dr. Bray.

Dr. Bray and the female doctor returned after about 5 minutes. I reiterated to him what I was looking for. He then told me that he was concerned with the fact that I was on prednisone, plaquenil, and MMF. He said he wouldn't have been so worried if I were only on prednisone, but he was concerned with the fact that I was on all 3. "Are you ever going to come off of those medications?" He asked me.

I explained to him that I have lupus, and the chances that I'll be off of those medications are slim to nil. Even if I were to come off any of those medications, it would probably be because some other medication came up that my rheumatologist wanted me to use.

"Well, at this point, I'd say no. I don't think you'll heal properly, and I don't want to do it because of the medications y0u're on."

All I could think in my head was "what?"

I thanked the doctor for his time and headed to the elevator, fighting tears back. When I got to the hospital door where I would need to stand in order to catch the shuttle bus that would take me to the hospital where my next appointment would be, I could feel the tears rolling down my cheek. I quickly rummaged through my huge bag until I found my sunglasses and put them on.

I've been through so much in my life. So many negative things. I feel like every part of my body has been damaged in some way. My legs are full of bruises that don't seem to go away, likely due to the fact that prednisone makes my skin thin. Because of that, I don't make it a habit of wearning anything that shows my legs. My left hip, right knee, and now my ankles hurt...because of prednisone. I had cataract removal surgery on both eyes and now I need glasses because my eyes cannot focus on their own....because of prednisone. I have a bumpy fistula in my left arm...a definite deterrent for me when I go to a store and see a really cute tank top. It is a rare, rare day that you'll ever hear me complain about any of that.

Now, I have a huge gash down the middle of my stomach due to what I think was human/hospital error, and all I want is to get it fixed...and I get shot down?? All these negative things keep happening to me, and I just want one thing to make me feel remotely better and I cannot have it? I was shocked at the plastic surgeon's answer...and pretty much not convinced either. As I got on the shuttle bus and sat down, I had made up my mind that I was going to ask my nephrologist to refer me to a different plastic surgeon.

I tried to raise my spirits up. When I got to the other hospital, I went directly to the home hemo department to complain. Rose wasn't there...only Stella. So I complained to her. She was very sympathetic towards me and certainly understood how I felt.

After shooting the breeze for a while, it was time for my appointment with Dr. Richardson. I headed to the correct floor and went to sign in at about 12:50.

"You're appointment isn't actually until 2pm, but I'll tell them you're here."

I could literally feel my eye twitching. Luckily, again, I was called in quickly by Stella.

I spoke to a female doctor (sorry, i'm bad with remembering names). She was very nice. She asked me the basic questions about my energy, my drop in hemoglobin, my fistula's performance, my medications, etc. After that, she went to call Dr. Richardson.

When he came in, I told him what happened with the plastic surgeon. He seemed genuinely surprised by what the surgeon had said, but didn't comment on it further. He told me to come and see him again in 2 months.

When he left, the other female doctor and Stella were still there. When the female doctor asked me if I needed anything....I told her that I wanted to be referred to another plastic surgeon. Stella jumped in and said "Yeah! Let's go ask Dr. Richardson before he disappears!"

We saw him just outside of the door. Again, fighting back tears, I told him I wanted to be referred to another surgeon. I told him (and as he always tells me and even other doctors when he's introducing them to me) that I don't complain about anything and I don't ask for a lot. This happens to be something I want, and I want to see someone else about it. He agreed whole-heartedly and agreed to refer me to a plastic surgeon who just so happened to move into the office next door to him. I was happy that he agreed with me and was so receptive.

I went home that day and felt a little bit better...but was still upset. Why, why, why can't I just have ONE THING THAT I WANT!!!???

I swear I'll have a freak attack if this new surgeon tells me to go fly a kite too.

3 thought(s):

Kevin said...

Sorry you are having trouble with your plans to "remove" your scar. My wife has 6-7 large scars (several inches long) on her stomach as a result of 3 kidney transplants, a c-section, old peritoneal ports, leg vein graft removal, and two fistulas. Be thankful you only have a few scars so far.

That being said, I wish scars were a bigger priority for surgeons. I know we should all be thankful they "saved" our life, but it wouldn't hurt to do a good job sewing, stapling, gluing and steri stripping the incision. Everyone of my wife's scars has a different look to it. You would think they could come up with a system to make them look better and more uniform. At least get one side to line up with the other. She has one spot on her belly she can't even feel because of the nerves they have cut. Her belly button has somehow managed to survive despite multiple attacks with a scalpel.

My wife is only 26 so her scars did bother her a lot appearance wise growing up. She has a vast collection of one piece swimsuits and tankinis in an effort to hide them on the beach as a result. It isn't just that they look "bad", it is having to explain them to the curious people who stop and ask.

Some people take pride in their scars. My wife does when she shows doctors. They are like tattoos that have a real meaning.

Miz Flow said...

Hi Kevin,

I am sorry for not responding to your comment many years ago, but I did read it and I did/do appreciate the kind words. I was looking at my stomach and admiring my transplant scar (which I wear like a badge of honour) but also frowning at my colostomy scar. At least my transplant scar is flat and looks relatively "normal", but because of poor decisions made by medical personnel, I'm left with this awful scar. I remembered your comment, so I went back to read it. It made me smile and feel a bit better.

Thank you

xo
Flo

Kevin Hartzog said...

You're welcome. I hope you and your transplant are doing well.

 
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