There seems to be an inverse relationship between my Hemoglobin level and Anxiety level. Hemoglobin is a protein in the red blood cell that carries oxygen through the body. As the hemoglobin decreases, I become more easily annoyed -- with myself and everyone around me. I get the anemia double-whammy from the alpha thalassemia trait (red cells are smaller and oddly shaped) AND low hemoglobin count.
The difference between me with hemoglobin at 12.0 and 9.5 is 'Marina the Upbeat, Can-do Gal' and 'Marina the Grouch.' 12.0 is fun to be around; 9.5 and below is best to avoid.
The filter between my thoughts and my voice has thinned over the course of prolonged illness. I used to be a pretty tactful person, able to smooth ruffled feathers and still get a point across. Active listening, patience, body language and good humor are reliable communication techniques. I've studied non-violent communication and practiced appreciative inquiry as a part of my spiritual growth and leadership development.
Yet when the hemoglobin dips below 9.5, all bets are off.
Active listening morphs into "what the heck were you thinking??"
Patience evaporates in the midst of household procrastination (isn't it a good idea to save big clean-up projects for the hour before company is to arrive?).
Humor is replaced with sarcasm: "of COURSE I know where your [insert any random item] is. Let me turn on my magical internal GPS device that tracks items I've never seen or used and find it for you."
While I'm not quite ready to appear on the Jerry Springer show, it seems like I'm trying out the role. My gripes, rants, and sarcasm are not how I'd like to be remembered, especially by those who get the brunt of my mis-placed frustration ~ my loved ones.
If life is my Advanced Placement exam, I'm clearly not ready for graduation.
I offered several "reasons" for my crankiness:
* teenagers are self-aborbed * it's the anemia talking
* 'no one' shares my sense of urgency * not enough oxygen to the brain
* we don't live in a barn * fatigue causes frustration
The correct answer may be "all of the above PLUS fear"
When my blood levels are closer to normal, I feel good enough to keep busy with the kids, help with the marrow registry drives, and spend time with friends. I don't make time to contemplate the upcoming stem cell transplant.
When the need for a blood transfusion approaches, I am so fatigued (this is different from feeling 'tired') that I physically cannot do as much. Climbing the stairs sets my heart pounding and I rely on the handrail to rest. I spend time in bed or on the sofa with hopes of 'recharging' enough to complete a basic household task.
When I'm forced to be still, questions and thoughts about what lies ahead bubble up in my head. Will I get a matched unrelated donor? Will it come through in time?
What happens if the myelofibrosis progresses too fast to acute leukemia before a donor is found?
What kinds of complications could happen during transplant process?
My organs have endured a lot of stress the last 6 years with the blood clots and medications. Will I be strong enough to over come the challenges?
How will my marriage change? What about Alex's senior year in high school ~ how will I keep track of him? What about Katrina's first year in college? I've seen enough movies on the Hallmark channel to know that mom's illness can reek havoc on kids' academic performance.
These thoughts remind me that control is truly an illusion, albeit one of my favorites. The feelings of vulnerability and powerlessness over my future stir an inner rage. It is not my happy place. I've read enough pop-psychology books to know that anger is a mask for fear. No amount of scenario planning can sooth the ever-present frustration that lies beneath a seemingly smooth, confident veneer.
It seems that I can accept the uncertainties when I'm busy. I comfort myself by doing what I can to help others, be present with my family and friends. I embrace my positive outlook and an inexplicable but real sense of peace that everything will work out for the best.
Showing posts with label fatigue. Show all posts
Showing posts with label fatigue. Show all posts
Thursday, June 13, 2013
Thursday, February 21, 2013
The Outs and Ins of MPNs
My last phlebotomy was on June 29, 2012. It took about 15 minutes to withdraw 500 ml of that RBC-rich blood from my body. Now, almost eight months later, I'm receiving my first transfusion of packed red blood cells. What a ride this is!
When my hemoglobin (hgb) and hematocrit (hct) was not stabilized with Hydrea last summer, I needed a couple of phlebotomies to get me back in the zone. Since last fall, these counts have slowly but steadily fallen.
Now, with Hgb at 8.2 and Hct at 27.4, I can't walk up the stairs without my heart pounding. I get light-headed and dizzy when I walk or stand for much time around the house. (You know something is not right when you find yourself looking for things to lean against as you move around. Similar to when I was pregnant and had to scope out the nearest restrooms)
One of the great take-aways from the Joyce Niblack MPN Patient Conference held in Arizona this month was encouragement from experts like Susan LeClair, PhD and Ruben Mesa, MD that blood counts and ranges are not absolutes for every patient. We are encouraged to pay attention to our individual symptoms and let our doctors know.
This gave me the confidence to let my local hematologist know that I need a blood transfusion now (with at Hgb of 8.2) -- I don't want to wait for it to reach 8.0 (the standard accepted level to begin transfusions). I've been very fatigued with it in the 9's for the last few weeks; when it fell lower this week, I had to cry "uncle."
Additionally, I plan to start taking Jakafi when it's approved by my insurance. Since blood counts often drop during the first few weeks, I want to start from a position of strength.
So yesterday I went to the hospital's outpatient infusion center to get my blood typed and cross-matched. Here is a good explanation of the blood transfusion process.
Today I'm getting 2 units of B negative packed red blood cells from a donor in Riverdale, Georgia. A nurse came in with a cooler that contained what I'm now calling my "energy pack." After verifying the info on the blood bag with the info on my wristband, the transfusion commenced.
As I sit here and write this while someone's generous gift is flowing into my veins, I feel quite humble. Someone took time (and energy) from his/her daily routine to help a stranger. It is an unconditional gift. No questions or judgments about my race, religion, age, gender, political views, sexual orientation, family situation, employment status, or the reason I need the blood. A pure gift of care and concern for others.
One of the nurses explained that this donor helped me with the red cells, and another with the white cells, and a third person with the platelets. How is that for leveraging a donation?
My mom was an ICU nurse while I was growing up and we learned how important blood donation is to saving lives. I started donating blood when I was 18 and in college. Because "B negative" is not a common blood type, the blood bank would sometimes call me in. I continued donating until my early 30's and quit due to chronic anemia. Later, in my 40's, I became symptomatic and diagnosed with Polycythemia Vera. I've been assured that my blood was good and safe for donation in my early years; the JAK2 mutation that triggered the PV occurred later.
I have no idea how much blood I donated in my healthy years. But I'm sure it not enough to cover the blood I will be receiving over the coming months. Some have told me that they would like to donate to someone they know. I remind them that should they ever need blood (due to illness or accident), the donor who saves them will likely be someone unknown to them.
Blood donation is the ultimate random act of kindness. I receive this gift of kindness and life with love and gratitude. It is yet another reminder of the interdependent web of life.
When my hemoglobin (hgb) and hematocrit (hct) was not stabilized with Hydrea last summer, I needed a couple of phlebotomies to get me back in the zone. Since last fall, these counts have slowly but steadily fallen.
Now, with Hgb at 8.2 and Hct at 27.4, I can't walk up the stairs without my heart pounding. I get light-headed and dizzy when I walk or stand for much time around the house. (You know something is not right when you find yourself looking for things to lean against as you move around. Similar to when I was pregnant and had to scope out the nearest restrooms)
One of the great take-aways from the Joyce Niblack MPN Patient Conference held in Arizona this month was encouragement from experts like Susan LeClair, PhD and Ruben Mesa, MD that blood counts and ranges are not absolutes for every patient. We are encouraged to pay attention to our individual symptoms and let our doctors know.
This gave me the confidence to let my local hematologist know that I need a blood transfusion now (with at Hgb of 8.2) -- I don't want to wait for it to reach 8.0 (the standard accepted level to begin transfusions). I've been very fatigued with it in the 9's for the last few weeks; when it fell lower this week, I had to cry "uncle."
Additionally, I plan to start taking Jakafi when it's approved by my insurance. Since blood counts often drop during the first few weeks, I want to start from a position of strength.
So yesterday I went to the hospital's outpatient infusion center to get my blood typed and cross-matched. Here is a good explanation of the blood transfusion process.
 |
| My "energy pack" |
As I sit here and write this while someone's generous gift is flowing into my veins, I feel quite humble. Someone took time (and energy) from his/her daily routine to help a stranger. It is an unconditional gift. No questions or judgments about my race, religion, age, gender, political views, sexual orientation, family situation, employment status, or the reason I need the blood. A pure gift of care and concern for others.
One of the nurses explained that this donor helped me with the red cells, and another with the white cells, and a third person with the platelets. How is that for leveraging a donation? My mom was an ICU nurse while I was growing up and we learned how important blood donation is to saving lives. I started donating blood when I was 18 and in college. Because "B negative" is not a common blood type, the blood bank would sometimes call me in. I continued donating until my early 30's and quit due to chronic anemia. Later, in my 40's, I became symptomatic and diagnosed with Polycythemia Vera. I've been assured that my blood was good and safe for donation in my early years; the JAK2 mutation that triggered the PV occurred later.
I have no idea how much blood I donated in my healthy years. But I'm sure it not enough to cover the blood I will be receiving over the coming months. Some have told me that they would like to donate to someone they know. I remind them that should they ever need blood (due to illness or accident), the donor who saves them will likely be someone unknown to them.
Blood donation is the ultimate random act of kindness. I receive this gift of kindness and life with love and gratitude. It is yet another reminder of the interdependent web of life.
Saturday, December 01, 2012
Let's Play Medical Pinball!
Apparently, I'm a slow learner. I believe that when things/people/events show up in one's life they present opportunities for introspection, learning and growth. Sometimes it's to practice patience, listen better, explore other perspectives, remember to be grateful.
The latest "opportunity" in my life is arthritis and chronic pain. I've been dealing with increasingly frequent and more painful swelling in my hands and feet and arthritis in all my joints since April of this year. (I posted pictures on an earlier post). Some days I cannot get out of bed without assistance. Seven months is a long time to live like the rusty Tin Man from Oz.
Not My Department
At first, the doctors put me back on prednisone (despite my previous horrible experience with it) because it is considered the "gold standard" for dealing with inflammation. It helped for awhile, but never completely knocked out the inflammation and pain. By August, the side effects of the prednisone outweighed any benefit. Tests for Rheumatoid Arthritis and Lupus came back negative. Whew!
All the while, my rheumatologist who treats me for Behcet's Disease was sympathetic to my plight but didn't have any answers. This would be an extremely rare side effect of the Remicade treatments, so he ruled that out. His hunch is that it is caused by the Polycythemia Vera disease process. He prescribed Colchicine (now called Colcrys) and I've been taking it for two months with no relief.
My hematologist/oncologist believes it is rheumatological and not caused by the PV.
My internist said that because I am a "complicated case with two rare diseases." The inflammation could be a result of one of the disease processes, a side effect of the Remicade infusions I get every 6 weeks, or something altogether new.
Living the Life of a Pinball
This fall, we "kicked it up a notch" and sought specialists at Emory University Hospital.
I've been wanting to change my treatment for Polycythemia Vera from Hydrea to Pegylated Interferon because my blood counts are difficult to manage, even with higher dosage of the Hydrea.
There is a non-randomized clinical trial through Emory that I might be able to join. It appeals to me because the study will document the effects of peg-interferon on PV patients. I find comfort in the notion that this illness has meaning if it contributes to greater knowledge for future patients.
Dr. Winton, the trial manager at Emory, requested I consult with their rheumatologist who is experienced treating Behcet's patients. That doctor viewed my parts that were swollen at the time of the visit as well as photos I've kept of previous flares. He concurred with my Kaiser rheumatologist that the inflammation process was not related to Behcet's, Remicade, or any other rheumatological disorder.
With the mystery inflammation acting up, Dr. Winton is reluctant to have me start taking interferon. Interferon can have many undesirable side effects; it can trigger auto-immune responses. I don't need gasoline on the fire!
Ask the Experts: Fellow Patients
Accessing the wisdom of my extended, international PV family, I shared pictures and queried whether anyone else has these issues. Turns out, it's rare, but YES. I was directed to explore Erythromelalgia (EM), another rare disease. Some PV patients develop symptoms best described as EM. It turns out that EM manifests in several shapes and forms. It is a clinical diagnosis (the only test is for patients who have a genetic pre-disposition -- generally younger onset). There are no tests for folks like me who may have "secondary EM."
So, back to my doctors I go, armed with this new information. "Not likely" is the response I get from all but my internist. Still, I try a few of the treatments that work for some EM patients. I've tried taking antihistamines (both H-1 and H-2 inhibitors), plain old aspirin, and colcrys. All to no avail.
My Next Experiment:
I am going to hold off on Remicade infusions (the next one is scheduled 3.5 weeks from now) and see if the inflammation resolves when the Remicade leaves my system.
Why shouldn't a very rare side effect occur in someone who appears to specialize in "rare" conditions? Know I've got to keep fingers crossed that Behcet's stays away when the Remicade wears off. There aren't many other treatment options available to me.
Let's Try Another Approach: Acupuncture
Two weeks ago, I began seeing an acupuncturist (professionally, of course -- Robert approves!). She determined that the primary cause of this painful inflammation is too much "heat" in my system. My blood, in particular, carries too much heat; likely due to the toxins in my system.
Toxins... really? You mean all those chemo pills, warfarin, and host of other meds can be toxic?
She explained that the acupuncture process will take awhile for meaningful results because it is working against all the medications I put in my body every day. [Note: she is not encouraging me to leave Western medicine, nor claiming to have the cure for the PV or Behcet's]
Frustration Galore
The frustration has become overwhelming. It conjures up a slew of non-productive questions in my mind:
How come so many intelligent, highly-trained doctors cannot determine the cause, or at least identify some treatment options for the inflammation?
Sometimes it feels like they can't wait for my office visit to time out. It can't be easy for them to have no answers.
How much worse would it be if the physical symptoms of the pain could not be visibly observed?
Even I think I'm making this crap up sometimes!
How many days of intense pain can a person reasonably endure?
The pain can consume one's thoughts and make it difficult to think of, let alone tackle, everyday life. I'm taking low doses of Lortab (hydrocodone & tylenol) and have resisted stronger pain meds for fear of addiction. Some patients are really struggling with this issue, on top of everything else.
How much are these illnesses harming my wonderful kids and hubby?
Moms are supposed to protect their children, be strong, and set good examples for their kids. "What's for dinner?" is a reasonable question; it shouldn't be answered with "I don't know ~ go fix yourself something."
What would happen if I stopped taking all medications and let my body de-tox?
Not sure if my body could de-tox before the blood thickens, new clots form, strokes occur, and Behcet's sores take off again.
What the heck am I supposed to learn from all this?
Now this question prompts me to find the humor in this.
Stay tuned for the next post!
The latest "opportunity" in my life is arthritis and chronic pain. I've been dealing with increasingly frequent and more painful swelling in my hands and feet and arthritis in all my joints since April of this year. (I posted pictures on an earlier post). Some days I cannot get out of bed without assistance. Seven months is a long time to live like the rusty Tin Man from Oz.
Not My Department
At first, the doctors put me back on prednisone (despite my previous horrible experience with it) because it is considered the "gold standard" for dealing with inflammation. It helped for awhile, but never completely knocked out the inflammation and pain. By August, the side effects of the prednisone outweighed any benefit. Tests for Rheumatoid Arthritis and Lupus came back negative. Whew!
All the while, my rheumatologist who treats me for Behcet's Disease was sympathetic to my plight but didn't have any answers. This would be an extremely rare side effect of the Remicade treatments, so he ruled that out. His hunch is that it is caused by the Polycythemia Vera disease process. He prescribed Colchicine (now called Colcrys) and I've been taking it for two months with no relief.
My hematologist/oncologist believes it is rheumatological and not caused by the PV.
My internist said that because I am a "complicated case with two rare diseases." The inflammation could be a result of one of the disease processes, a side effect of the Remicade infusions I get every 6 weeks, or something altogether new.
 |
| Still Haven't Won this Game! |
This fall, we "kicked it up a notch" and sought specialists at Emory University Hospital.
I've been wanting to change my treatment for Polycythemia Vera from Hydrea to Pegylated Interferon because my blood counts are difficult to manage, even with higher dosage of the Hydrea.
There is a non-randomized clinical trial through Emory that I might be able to join. It appeals to me because the study will document the effects of peg-interferon on PV patients. I find comfort in the notion that this illness has meaning if it contributes to greater knowledge for future patients.
Dr. Winton, the trial manager at Emory, requested I consult with their rheumatologist who is experienced treating Behcet's patients. That doctor viewed my parts that were swollen at the time of the visit as well as photos I've kept of previous flares. He concurred with my Kaiser rheumatologist that the inflammation process was not related to Behcet's, Remicade, or any other rheumatological disorder.
With the mystery inflammation acting up, Dr. Winton is reluctant to have me start taking interferon. Interferon can have many undesirable side effects; it can trigger auto-immune responses. I don't need gasoline on the fire!
Ask the Experts: Fellow Patients
Accessing the wisdom of my extended, international PV family, I shared pictures and queried whether anyone else has these issues. Turns out, it's rare, but YES. I was directed to explore Erythromelalgia (EM), another rare disease. Some PV patients develop symptoms best described as EM. It turns out that EM manifests in several shapes and forms. It is a clinical diagnosis (the only test is for patients who have a genetic pre-disposition -- generally younger onset). There are no tests for folks like me who may have "secondary EM."
So, back to my doctors I go, armed with this new information. "Not likely" is the response I get from all but my internist. Still, I try a few of the treatments that work for some EM patients. I've tried taking antihistamines (both H-1 and H-2 inhibitors), plain old aspirin, and colcrys. All to no avail.
My Next Experiment:
I am going to hold off on Remicade infusions (the next one is scheduled 3.5 weeks from now) and see if the inflammation resolves when the Remicade leaves my system.
Why shouldn't a very rare side effect occur in someone who appears to specialize in "rare" conditions? Know I've got to keep fingers crossed that Behcet's stays away when the Remicade wears off. There aren't many other treatment options available to me.
Two weeks ago, I began seeing an acupuncturist (professionally, of course -- Robert approves!). She determined that the primary cause of this painful inflammation is too much "heat" in my system. My blood, in particular, carries too much heat; likely due to the toxins in my system.
Toxins... really? You mean all those chemo pills, warfarin, and host of other meds can be toxic?
She explained that the acupuncture process will take awhile for meaningful results because it is working against all the medications I put in my body every day. [Note: she is not encouraging me to leave Western medicine, nor claiming to have the cure for the PV or Behcet's]
 |
| Judge these non-retouched images at your own risk! I'm pretty cranky these days. ;) |
 |
| The needles don't hurt a bit! |
Frustration Galore
The frustration has become overwhelming. It conjures up a slew of non-productive questions in my mind:
How come so many intelligent, highly-trained doctors cannot determine the cause, or at least identify some treatment options for the inflammation?
Sometimes it feels like they can't wait for my office visit to time out. It can't be easy for them to have no answers.
How much worse would it be if the physical symptoms of the pain could not be visibly observed?
Even I think I'm making this crap up sometimes!
How many days of intense pain can a person reasonably endure?
The pain can consume one's thoughts and make it difficult to think of, let alone tackle, everyday life. I'm taking low doses of Lortab (hydrocodone & tylenol) and have resisted stronger pain meds for fear of addiction. Some patients are really struggling with this issue, on top of everything else.
How much are these illnesses harming my wonderful kids and hubby?
Moms are supposed to protect their children, be strong, and set good examples for their kids. "What's for dinner?" is a reasonable question; it shouldn't be answered with "I don't know ~ go fix yourself something."
What would happen if I stopped taking all medications and let my body de-tox?
Not sure if my body could de-tox before the blood thickens, new clots form, strokes occur, and Behcet's sores take off again.
What the heck am I supposed to learn from all this?
Now this question prompts me to find the humor in this.
Stay tuned for the next post!
Sunday, February 27, 2011
Myeloproliferative Neoplasms Conference - Day 1 Highlights
More than 200 cancer patients, supporters, and physicians/researchers gathered at Mayo Clinic Scottsdale this morning at 8 am to begin a lively conference about the state of knowledge and treatment of the Myeloproliferative Neoplasms -- Essential Thrombocythemia, Polycythemia Vera, and Myelo Fibrosis.
Dr. Ruben Mesa opened the session and welcomed everyone and reminds us that this conference is because of Joyce Niblack. Her husband Bob carries on her work through the CMPD Education Foundation with this Biennial Conference.
It will take some time to prepare proper notes from the conference, as the presenters had visual presentations and talked quickly. When I get all the information together, I will post a complete written report.
Here are a few nuggets from today:
The hematocrit that feels best for you is where you should be. While some people feel good at 42 or 45, others may need it lower to feel good, like 38 - 40. Don't let your doctor get stuck on a prescribed number if it doesn't feel good for you.
Don't worry about tracking your JAK2 allele burden over time; we don't know that it has any clinical relevance. All the drugs today inhibit the JAK2.
JAK2 inhibitors are unlikely to eliminate the disease.
Whole exome sequencing to identifyMPN alleles and gene sequencing is becoming more affordable.
Soon there will be a lot of data; they will be able to learn to identify what genes cause the transformation to leukemia.
In your genes:
2 copies of JAK2 => PV
1 copy of JAK2 => ET
Future in drug therapies: combine drugs in rational combinations to facilitate next level of clinical trials
Prolonged use of interferon can reverse fibrosis in the bone marrow (does not cure the disease).
Help for Pruritis (itchy skin):
Formication: the sensation of ants crawling on your body.
Hematopoietic Cell Transplantation (HCT):
The only treatment that has potential for a cure for MPNs is the stem cell transplant.
Pegasys (Pegylated Interferon) is more potent than regular Interferon-a. The dose is not so important as the duration. The effect is probably due to your own biologic abilities.
Standard practice regarding Phlebotomies: no more than 4 per year.
If you are going to get a splenectomy, go to one of the half dozen surgeons who have done the procedure on MPN patients. Removing the spleen has real risks: clots in the area; 5-6% mortality (similar to open heart surgery).
When to have another Bone Marrow Biopsy (BMB)? only if concerned the diseased has progressed to Myelofibrosis.
That's all for now!
Dr. Ruben Mesa opened the session and welcomed everyone and reminds us that this conference is because of Joyce Niblack. Her husband Bob carries on her work through the CMPD Education Foundation with this Biennial Conference.
It will take some time to prepare proper notes from the conference, as the presenters had visual presentations and talked quickly. When I get all the information together, I will post a complete written report.
Here are a few nuggets from today:
The hematocrit that feels best for you is where you should be. While some people feel good at 42 or 45, others may need it lower to feel good, like 38 - 40. Don't let your doctor get stuck on a prescribed number if it doesn't feel good for you.
Don't worry about tracking your JAK2 allele burden over time; we don't know that it has any clinical relevance. All the drugs today inhibit the JAK2.
JAK2 inhibitors are unlikely to eliminate the disease.
Whole exome sequencing to identifyMPN alleles and gene sequencing is becoming more affordable.
Soon there will be a lot of data; they will be able to learn to identify what genes cause the transformation to leukemia.
In your genes:
2 copies of JAK2 => PV
1 copy of JAK2 => ET
Future in drug therapies: combine drugs in rational combinations to facilitate next level of clinical trials
Prolonged use of interferon can reverse fibrosis in the bone marrow (does not cure the disease).
Help for Pruritis (itchy skin):
- JAK2 inhibitors are good.
- Interferon is better than HU.
- UV narrow band B works 70% of time (see dermatologist)
- Weight wraps (prednisone in a wrap) (see dermatologist)
- Aprepitant, an anti-emetic, works on the Substance P
Formication: the sensation of ants crawling on your body.
Hematopoietic Cell Transplantation (HCT):
The only treatment that has potential for a cure for MPNs is the stem cell transplant.
Pegasys (Pegylated Interferon) is more potent than regular Interferon-a. The dose is not so important as the duration. The effect is probably due to your own biologic abilities.
Standard practice regarding Phlebotomies: no more than 4 per year.
If you are going to get a splenectomy, go to one of the half dozen surgeons who have done the procedure on MPN patients. Removing the spleen has real risks: clots in the area; 5-6% mortality (similar to open heart surgery).
When to have another Bone Marrow Biopsy (BMB)? only if concerned the diseased has progressed to Myelofibrosis.
That's all for now!
Wednesday, October 28, 2009
It's official -- I do have a brain
Today was the only day this week without a medical appointment, but I did receive two bits of news.
First, Kaiser approved a referral to an MPD specialist at Emory University Hospital -- I'm very happy to be able to get the perspective of someone who works with a lot of patients with a myeloproliferative disorder.
The second news came in a phone call from my internist. The MRI & MRA done on my head and neck on Monday showed no clots (great news). But it does show white matter changes which could indicate demyelinating disease (multiple sclerosis). She referred me to a neurologist and I've got an appointment for December 2nd.
Hopefully we'll get some better insight to the headaches and blotchy vision that continues to disrupt my daily activities.
My blood pressure is under control and this provides great relief. EKG is normal and I'll continue to calibrate the blood pressure meds with my internist as the hematocrit improves with the phlebotomies and hydrea.
Tomorrow I'll be at Emory for a nuclear medicine test of the red blood cells.
Friday is phlebotomy day -- this will set me up for a great weekend!
Happy Halloween!
First, Kaiser approved a referral to an MPD specialist at Emory University Hospital -- I'm very happy to be able to get the perspective of someone who works with a lot of patients with a myeloproliferative disorder.
The second news came in a phone call from my internist. The MRI & MRA done on my head and neck on Monday showed no clots (great news). But it does show white matter changes which could indicate demyelinating disease (multiple sclerosis). She referred me to a neurologist and I've got an appointment for December 2nd.
Hopefully we'll get some better insight to the headaches and blotchy vision that continues to disrupt my daily activities.
My blood pressure is under control and this provides great relief. EKG is normal and I'll continue to calibrate the blood pressure meds with my internist as the hematocrit improves with the phlebotomies and hydrea.
Tomorrow I'll be at Emory for a nuclear medicine test of the red blood cells.
Friday is phlebotomy day -- this will set me up for a great weekend!
Happy Halloween!
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