A New Experience

I recently met with a new Urologist. This is my fifth. The primary Urologist I had was the type of doctor that saw two things when he looked me. Bipolar Disorder and my bladder (ureters). He never saw me as a whole person. No one has been able to find a cause for my kidney failure and as I would have my first consult with each new doctor they would end with “I don’t know what I could do for you”. To me this was unacceptable. The Nephrologist telling me I really only have one kidney and my choices were stents for the rest of my life or tubes coming out of my back. He thought it was good news.

The new Urologist was kind and compassionate. He explained in detail what the tubes coming out of my back would be like. They would hang down against the sides of my legs with little drainage bags at the end. I could never shower again and would have to do sponge baths only. The tubes are open to infection and get infected often. He told me he would try his hardest to make sure this wasn’t an option. He’s going to try a new kind of stent that the doctors I had been to previously didn’t have access to yet. He also said that there is a surgery similar to a kidney transplant but it involves your own kidney. He said this was a worse case scenario. He thinks that I will probably have to have stents the rest of my life. They aren’t so bad. The only downside to them is going under anesthesia every 3 to 4 months. It isn’t good to have that much anesthesia. The last 2 times my brain didn’t want to come out of the anesthesia. This is part of the Conversion Disorder. I can only hope it doesn’t happen again.

Right now I’m battling an infection and have to take 1,000 milligrams of an antibiotic for two weeks. I’m not feeling all that great. Plus my good computer is acting up and I have tried everything to fix it. The dog needs to be neutered ($180), I need an eye exam to get my contacts ($250), and I have a cavity. Oh! My car is acting weird too. I hate being stressed about money. I wish there was a way for me to do something to make money without interfering with Disability. I’m limited in what I can do. There isn’t much out there. I feel pretty good considering all of this. Mentally I have been doing better I just hope it lasts longer this time.

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YOU’RE UNBELIEVABLE….

There is probably nothing worse to me than being disbelieved. When someone questions my credibility regarding my own health I find myself filled with rage.

My sister and I had gone to a Urologist at Mass General recently for a 3rd opinion. My usual Urologist suggested it and his office set up the appointment. It was less that fruitful. My sister was making a fist and ready to slap the woman by the time we left. The Doctor had no answers, shook her head and said “Jesus Christ” while looking at my CT scan. It was like we weren’t even in the room. She also said “What a Goddamn mess!”. She was looking at my scans and test results at the time. So she really did not want to take on my case. She actually said “I really don’t know what you expect me to do”. I thought, hmmmmm, BE A DOCTOR MORON!!!

When my usual Urologist didn’t get notes from her office his staff called to ask me how the visit went. I told them everything. I was then asked if what I was saying was factual. The nurse then asked if she could call my sister to corroborate my “story”.

I was livid. My account of the situation wasn’t to be believed but if my sister confirmed it then it would be. I wondered of they did this to every patient or just the ones with Bipolar Disorder at the TOP OF THEIR CHART. I didn’t have Kidney Failure or Chronic Kidney Disease listed first on anything it was always Patient is Bipolar.

I don’t know about anyone else but I find this offensive. I am truthful with every new Doctor I meet. I tell them that I am diagnosed as Bipolar and the meds I take. It’s important for them to know so they can make the right decisions medication wise. I don’t tell them so I can be treated as inarticulate, obtuse, or delusional.

I know immediately when this will happen because people have a habit of speaking louder to me. Because I’m deaf, dumb, and blind? I do have a little trouble hearing but that’s selective, I do wear contact lenses and can only see my hand in front of my face without them. But dumb? Nope. Just the opposite.

My dad didn’t understand the problem. I asked him how would he like it if his Dialysis Center called me to verify if what he told them was true or not. If he really had a UTI or was he just being dramatic. He understood then.

My sister finally understands because I force her to come with me to as many Doctor appointments as I can. I’ve often thought of bringing in a tape recorder but my sister thought it might be overkill. She did say I would probably have had grounds for at least a few lawsuits if I┬áhad in the past. I was surprised she admitted as much.

At least all of this has brought my sister and I a little closer. It’s a start and I’ll take it. My sister didn’t always believe at times either. Once she started coming to the Doctors with me she started to understand. It started with the first time. The time she grabbed the Doctor by his white coat and in a calm clear voice told him in no uncertain terms that I would “never be filmed like some circus freak for you and your colleagues to get off on and we were leaving” and by the way “f*ck off”. It was in that moment I loved her more than anything.

I’m lucky I have at least one advocate for me. I think of how many of us do not. It brings on the rage, tears and frustration. I try to educate people but if they already think they know everything, it’s impossible. I love it when people try to tell me about Bipolar Disorder. Like I haven’t researched the thing to death already. The ones who encourage me to go to Church are the best. I want to tell them I’m an Atheist or follow Anton LaVey but they probably wouldn’t get my sense of humor.

Plus I’m unbelievable. I like to think in a good way, like something so fantastic you just can’t believe it. How’s that for delusional?

CONDESCENSION: MY FAVORITE

I finally looked up my diagnosis codes from my Medical History to find out what they meant. I did this because after 2 attempts to get answers from the Nephrologist without any I had enough. I saw the Nephrologist over 3 weeks ago. His secretary is also the secretary for my father’s Nephrologist. I have had to talk to her before on behalf of my dad. She isn’t the nicest or most patient person. She was irritated I couldn’t get out what needed to be said because of my stutter and word grasping. She never returns phone calls and neither do the Doctors.

Today I decided to call my Urologist to see if the results were sent to him. The nurse told me she talked to the other doctor’s secretary who said she never received any phone calls from me. The nurse then interrupted me while I was trying to tell her that I have talked to this person before because of my dad. She said “Wait this is about you so could you stop talking? I don’t know what you expect me to do about this. The other doctor was on vacation and your file is in his bin to go over. IF our Doctor had seen anything IMPORTANT in what was sent to him he would have called you.” I tried to explain that I was confused and didn’t know what to do next. I was being told I would have to live with stents for the rest of my life or eventually have tubes going into my back directly to my kidneys. This didn’t sound acceptable to me. With the stents I would be going under anesthesia every 3 to 4 months. That isn’t good for someone like me.

My Conversion Disorder almost prevented me from waking up from the anesthesia the last time because I was stressed and scared. My brain wanted to make everything go away and leave me in a Catatonic state. So imagine doing that every 3 to 4 month for the rest of your life. I don’t even want to think about the tubes coming out of my back.

I don’t like being spoken to like I’m a bother or not important. I don’t like being dismissed and embarrassed. I really don’t like being ignored.

The lack of compassion I have seen in most of the doctors I’ve visited lately is overwhelming. I am disgusted. I have no idea what to do next when I’ve been to everyone in my state and a specialist at Mass General.

Here are some of the diseases/disorders/abnormalities I have been diagnosed with.

  • Bipolar Disorder
  • Conversion Disorder
  • PTSD
  • Celiac Disease
  • Chronic Kidney Failure Stage 3
  • Vitamin D resistant Rickets
  • Intestinal Malabsorption
  • Leukocytopenia
  • Lymphocytopenia
  • Monoclonal Gammopathy
  • Spinal Stenosis
  • Osteoarthritis
  • Retrolisthesis
  • Osteoporosis
  • Gallbladder Disease
  • Hydronephrosis
  • Iron Deficiency Anemia

I’m pretty sure I’m missing something but you get the point.

By the way the Nephrologist just called and was very kind and sorry about not getting back to me. He explained that he had a few more labs to go over but was pretty sure that there really isn’t anything anyone can do for me. It looks like the stents are my only option. He was nice and sympathetic but why did I have to go through so much to get one person to care?