My bone marrow biopsy is scheduled for this Friday afternoon, and I know where I'm heading once the procedure is over and I'm discharged. Orange Dream Machine Smoothie, here I come!
Tuesday, August 13, 2013
On the Bright Side...
I stopped by the UM Cancer Center tonight to pick something up and was downright giddy to see that there's a Jamba Juice Smoothie Station there. I Googled this (of course!) and it just opened AND it's the first Jamba in Michigan. Woot!
My bone marrow biopsy is scheduled for this Friday afternoon, and I know where I'm heading once the procedure is over and I'm discharged. Orange Dream Machine Smoothie, here I come!
My bone marrow biopsy is scheduled for this Friday afternoon, and I know where I'm heading once the procedure is over and I'm discharged. Orange Dream Machine Smoothie, here I come!
Monday, August 12, 2013
Plot Twist
A few months ago, a friend was chiding me for my lack of new blog posts. I told her that kidney disease is like a slow movie with a compelling plot. The changes can be subtle and take time, but they come -- and are significant.
The latest twist? My kidney biopsy results are back and, according to Mayo Clinic, I have something called amyloidosis -- a rare blood disease. I have been referred to U-M hematology and have an appointment at the Cancer Center's Myeloma Clinic on August 16.
All of the sudden, my slow moving plot has turned into an action film.
I am Bruce Willis saying "Yippee Ki Yay."
I am Optimus Prime, driving down country roads in Adrian, get shot at by the enemy. (Credit goes to Jeremy Sell for this Transformers 4 footage.)
And I'm thinking that things are going to change.
The latest twist? My kidney biopsy results are back and, according to Mayo Clinic, I have something called amyloidosis -- a rare blood disease. I have been referred to U-M hematology and have an appointment at the Cancer Center's Myeloma Clinic on August 16.
All of the sudden, my slow moving plot has turned into an action film.
I am Bruce Willis saying "Yippee Ki Yay."
I am Optimus Prime, driving down country roads in Adrian, get shot at by the enemy. (Credit goes to Jeremy Sell for this Transformers 4 footage.)
And I'm thinking that things are going to change.
Wednesday, June 19, 2013
Searching for Answers
It's been exactly one month since my biopsy, and I still don't have results. Crazy.
Since I'm not getting answers from U-M, I've decided to look elsewhere for my test results. I debated several solid information sources -- Nostradamus; a Magic 8 Ball; 1-800-PSYCHICS; the crazy lady down the street -- before turning to something with much greater statistical validity: a fortune cookie from Panda Express.
I was convinced that this cookie would provide the answers I so anxiously crave.
So imagine my surprise when I opened the cookie and found this:
Since I'm not getting answers from U-M, I've decided to look elsewhere for my test results. I debated several solid information sources -- Nostradamus; a Magic 8 Ball; 1-800-PSYCHICS; the crazy lady down the street -- before turning to something with much greater statistical validity: a fortune cookie from Panda Express.
I was convinced that this cookie would provide the answers I so anxiously crave.
So imagine my surprise when I opened the cookie and found this:
Saturday, June 1, 2013
Post-Biopsy Update
Quick update: I felt OK the first few days after my biopsy, but then something didn't seem quite right. I was having a hard time taking a deep breath and overall just felt a little bit "off."
On May 28 I went back to UM and was diagnosed with:
fever (100.5)
flank pain
retroperitoneal bleed
My doctors ran several tests, debated a CT scan, and opted to take the "wait and see" approach. They had me come back on May 30 to repeat the tests. And they called me on May 31 so that I could describe how I'm feeling.
My fever is gone, but the flank discomfort remains.
I'm hopeful I'm on my way to feeling better.
On May 28 I went back to UM and was diagnosed with:
fever (100.5)
flank pain
retroperitoneal bleed
My doctors ran several tests, debated a CT scan, and opted to take the "wait and see" approach. They had me come back on May 30 to repeat the tests. And they called me on May 31 so that I could describe how I'm feeling.
My fever is gone, but the flank discomfort remains.
I'm hopeful I'm on my way to feeling better.
Thursday, May 23, 2013
My Kidney Biopsy Experience
I just had my second kidney biopsy. Beforehand, I decided to document as much as I could and then write a blog entry so that others facing a biopsy would have a first-hand account of my experience and would know what to expect. Sure, there is a lot of information online, like this page from Johns Hopkins, but I wanted to provide a real account from an actual procedure. Big thanks to my Mom for being there and helping me track the details.
May 22, 2013
7:30 a.m.
Arrived at hospital.
7:48 a.m.
Gave urine sample and changed into gown.
7:52 a.m.
Warm blankets delivered. Yes!
Vitals taken: temperature 98.6; blood pressure 103/59
8:10 a.m.
Blood drawn and IV port put into right arm.
8:20 a.m.
Researcher came to ask me to participate in a study of kidney disease patients in Ann Arbor, Detroit, Chicago and Philadelphia. I agree. (More on this in a future blog entry.)
8:40 a.m.
Research interview ends. Paperwork is signed.
8:55 a.m.
Taken for kidney ultrasound. Hospital staff expresses some confusion as to why I'm having a separate ultrasound; say it's mostly done on transplanted kidneys, not native. They roll me down the hall anyway.
9:20 a.m.
Ultrasound done; back in original prep room. And then I wait. No meds. No IV in port.
10:05 a.m.
Taken to 7th floor for kidney biopsy.
10:15 a.m.
In procedure room. Blood pressure taken. Signed several forms giving approval to do the procedure and acknowledging that I know the risks. I am asked to roll over onto my stomach as they prep and wait for the doctor.
10:25 a.m. (THE ACTUAL BIOPSY)
Procedure begins. I'm on my stomach. Doctor verbally walks me through each step. Says he has viewed my ultrasound and things look good. Then he uses ultrasound machine again to find my left kidney and determine where he wants to make the incision. He makes a mark on my back. Then he cleans/sterilized my back. Then he again uses the ultrasound to make sure he still likes the spot. He does. Then he puts dressing around the area he will be working. Now comes the Novocain. He warns this will "feel like a series of bee stings" and he makes several pokes. Then he gives it a moment to kick in and numb the skin. It does. He makes the incision in my back and I don't feel a thing.
He then goes back to the Novocain again, going through the incision and pushing the drug deeper into the muscle. We wait a few minutes.
He is now ready to make a series of punctures in order to extract kidney tissue. So far, this has been just like when I had a biopsy in 2010. So I'm anticipating some pressure, a few punctures, and it would all be over. Only it didn't go so smoothly this time.
The first puncture was typical. I hold my breath when instructed so that my body stays steady. Some pressure but no pain. But the second puncture was awful. I felt every part of it, gasping in pain as the tool burrowed into my back. The rest of the procedure is a bit of a blur. There's some scurrying as the medical team tries to figure out what happened. The doctor first guesses that we may "have strayed outside" the Novocaine area; he then uses the ultrasound and notices a hematoma (bruise). I am bleeding, a typical complication of a kidney biopsy.
I am crying, the pillow under my face wet from my tears. I'm trying to keep my composure so that we can finish the procedure, but I am completely freaked out. The first biopsy didn't feel like this. At all. I am in pain. I am scared. And I'm so upset that this is part of my life.
I don't have a clear memory of what happened next, but the doctor did do three more punctures and took a total of five samples. He then checked the samples under the microscope to make sure that he got what he needed. During this time, I continued crying. Nurses put pressure on my back to stop the bleeding.
10:50 a.m.
When he knew the tissue samples were good and I was done, he came over and sat in front of me so I could see him. As he talked, and I knew I was done with the procedure, I completely lost it and started crying really hard -- the hyperventilating type of crying. I pride myself on my pain tolerance and my ability to be stoic, but this was just a complete meltdown.
Bandage was applied. I was rolled back onto my back. The nurse gave me 650 mg of Tylenol for my pain and gave me some water. Everyone left the room. I sat and sobbed.
11:20 a.m.
In recovery room; try not to cry when I see my Mom for the first time.
11:35 a.m.
IV fluids started.
12:10 p.m.
I fall asleep (thankfully).
1:15 p.m.
I wake up. BP is 110/55.
2:35 p.m.
Blood is drawn again.
3:20 p.m.
I am allowed to get out of bed to use the bathroom. There is no bleeding.
3:35 p.m.
Doctor visits. He explains to me what happened during the procedure, although I still don't totally get it.
3:50 p.m.
Given more Tylenol; moved to another recovery room.
4:15 p.m.
BP is 120/73
4:30 p.m.
Discharged.
May 22, 2013
7:30 a.m.
Arrived at hospital.
7:48 a.m.
Gave urine sample and changed into gown.
7:52 a.m.
Warm blankets delivered. Yes!
Vitals taken: temperature 98.6; blood pressure 103/59
8:10 a.m.
Blood drawn and IV port put into right arm.
8:20 a.m.
Researcher came to ask me to participate in a study of kidney disease patients in Ann Arbor, Detroit, Chicago and Philadelphia. I agree. (More on this in a future blog entry.)
8:40 a.m.
Research interview ends. Paperwork is signed.
8:55 a.m.
Taken for kidney ultrasound. Hospital staff expresses some confusion as to why I'm having a separate ultrasound; say it's mostly done on transplanted kidneys, not native. They roll me down the hall anyway.
9:20 a.m.
Ultrasound done; back in original prep room. And then I wait. No meds. No IV in port.
10:05 a.m.
Taken to 7th floor for kidney biopsy.
10:15 a.m.
In procedure room. Blood pressure taken. Signed several forms giving approval to do the procedure and acknowledging that I know the risks. I am asked to roll over onto my stomach as they prep and wait for the doctor.
10:25 a.m. (THE ACTUAL BIOPSY)
Procedure begins. I'm on my stomach. Doctor verbally walks me through each step. Says he has viewed my ultrasound and things look good. Then he uses ultrasound machine again to find my left kidney and determine where he wants to make the incision. He makes a mark on my back. Then he cleans/sterilized my back. Then he again uses the ultrasound to make sure he still likes the spot. He does. Then he puts dressing around the area he will be working. Now comes the Novocain. He warns this will "feel like a series of bee stings" and he makes several pokes. Then he gives it a moment to kick in and numb the skin. It does. He makes the incision in my back and I don't feel a thing.
He then goes back to the Novocain again, going through the incision and pushing the drug deeper into the muscle. We wait a few minutes.
He is now ready to make a series of punctures in order to extract kidney tissue. So far, this has been just like when I had a biopsy in 2010. So I'm anticipating some pressure, a few punctures, and it would all be over. Only it didn't go so smoothly this time.
The first puncture was typical. I hold my breath when instructed so that my body stays steady. Some pressure but no pain. But the second puncture was awful. I felt every part of it, gasping in pain as the tool burrowed into my back. The rest of the procedure is a bit of a blur. There's some scurrying as the medical team tries to figure out what happened. The doctor first guesses that we may "have strayed outside" the Novocaine area; he then uses the ultrasound and notices a hematoma (bruise). I am bleeding, a typical complication of a kidney biopsy.
I am crying, the pillow under my face wet from my tears. I'm trying to keep my composure so that we can finish the procedure, but I am completely freaked out. The first biopsy didn't feel like this. At all. I am in pain. I am scared. And I'm so upset that this is part of my life.
I don't have a clear memory of what happened next, but the doctor did do three more punctures and took a total of five samples. He then checked the samples under the microscope to make sure that he got what he needed. During this time, I continued crying. Nurses put pressure on my back to stop the bleeding.
10:50 a.m.
When he knew the tissue samples were good and I was done, he came over and sat in front of me so I could see him. As he talked, and I knew I was done with the procedure, I completely lost it and started crying really hard -- the hyperventilating type of crying. I pride myself on my pain tolerance and my ability to be stoic, but this was just a complete meltdown.
Bandage was applied. I was rolled back onto my back. The nurse gave me 650 mg of Tylenol for my pain and gave me some water. Everyone left the room. I sat and sobbed.
11:20 a.m.
In recovery room; try not to cry when I see my Mom for the first time.
11:35 a.m.
IV fluids started.
12:10 p.m.
I fall asleep (thankfully).
1:15 p.m.
I wake up. BP is 110/55.
2:35 p.m.
Blood is drawn again.
3:20 p.m.
I am allowed to get out of bed to use the bathroom. There is no bleeding.
3:35 p.m.
Doctor visits. He explains to me what happened during the procedure, although I still don't totally get it.
3:50 p.m.
Given more Tylenol; moved to another recovery room.
4:15 p.m.
BP is 120/73
4:30 p.m.
Discharged.
Wednesday, April 24, 2013
Name That Ailment
It's been awhile since I've posted, but there's a reason.
My nephrology appointment was March 25, and it was sobering. My doctor reminded me that there still isn't a clear picture of what's going on with me. I left that day with a sheet of paper that listed six diagnoses related to my visit. (I added the definitions below for clarity. All are from the Free Medical Dictionary.) The sheet read:
Diagnoses Associated With This Visit:
1. Glomerulonephritis - Primary (Renal disease characterized by the inflammation of the glomeruli)
NOTE: IgA is a form of glomerulonephritis
2. Proteinuria (The presence of excessive amounts of protein in the urine)
3. Hypertension - Chronic (Abnormally elevated blood pressure)
4. Gammopathy (A disturbance in the synthesis of immunoglobulins; proteins having antibody activity increase greatly in the blood)
5. Fatigue (Physical or mental weariness)
6. NASH - Nonalcoholic Steateohepatitis (Fat deposits in the liver and inflammation not due to excessive alcohol abuse)
There was also a list at the bottom of the sheet called "Problem List" that had the above plus:
1. Undifferentiated Connective Disease Disease (An early stage of a connective disease disease, in which the predominant organ of involvement is not yet manifest)
It was enough to make my head spin.
The doctor ordered 22 tests that day, and soon it was time to play the waiting game again.
I hate waiting for test results. And yet this seems to be the new rhythm of my life. Take some tests, wait anxiously, get confused by the results, and then undergo more tests. Test. Wait. Repeat. The tests always seem to lead to more questions -- and more questions = more tests. And it's really getting old.
So I think I needed to be away from the blog for a bit. I just couldn't bring myself to give this update and then have people ask questions that I couldn't answer, no matter how badly I wanted to provide answers.
What have I been up to since my last post? There's been a robot diversion out east. I watched a lot of basketball games (Go Blue!). There was a field trip to The D with a dear friend. And about two weeks of a serious bug/illness that I can't seem to shake.
But now I'm back. Next up is a kidney biopsy (my second) that has yet to be scheduled.
Let the journey continue.
My nephrology appointment was March 25, and it was sobering. My doctor reminded me that there still isn't a clear picture of what's going on with me. I left that day with a sheet of paper that listed six diagnoses related to my visit. (I added the definitions below for clarity. All are from the Free Medical Dictionary.) The sheet read:
Diagnoses Associated With This Visit:
1. Glomerulonephritis - Primary (Renal disease characterized by the inflammation of the glomeruli)
NOTE: IgA is a form of glomerulonephritis
2. Proteinuria (The presence of excessive amounts of protein in the urine)
3. Hypertension - Chronic (Abnormally elevated blood pressure)
4. Gammopathy (A disturbance in the synthesis of immunoglobulins; proteins having antibody activity increase greatly in the blood)
5. Fatigue (Physical or mental weariness)
6. NASH - Nonalcoholic Steateohepatitis (Fat deposits in the liver and inflammation not due to excessive alcohol abuse)
There was also a list at the bottom of the sheet called "Problem List" that had the above plus:
1. Undifferentiated Connective Disease Disease (An early stage of a connective disease disease, in which the predominant organ of involvement is not yet manifest)
It was enough to make my head spin.
The doctor ordered 22 tests that day, and soon it was time to play the waiting game again.
I hate waiting for test results. And yet this seems to be the new rhythm of my life. Take some tests, wait anxiously, get confused by the results, and then undergo more tests. Test. Wait. Repeat. The tests always seem to lead to more questions -- and more questions = more tests. And it's really getting old.
So I think I needed to be away from the blog for a bit. I just couldn't bring myself to give this update and then have people ask questions that I couldn't answer, no matter how badly I wanted to provide answers.
What have I been up to since my last post? There's been a robot diversion out east. I watched a lot of basketball games (Go Blue!). There was a field trip to The D with a dear friend. And about two weeks of a serious bug/illness that I can't seem to shake.
But now I'm back. Next up is a kidney biopsy (my second) that has yet to be scheduled.
Let the journey continue.
Monday, April 22, 2013
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