Food Guide where basically everything I enjoy is a no.
FOURTH TACTICAL GOAL :
Learning what was a YES, a Very Little or a No.
Food Guide where basically everything I enjoy is a no.
FOURTH TACTICAL GOAL :
Learning what was a YES, a Very Little or a No.
Diagnosis, Family History and Treatment.
FIRST STRATEGY IMPLEMENTED :
"Divide and conquer."
Chronic Kidney Disease (CKD) Stage 4 Gfr 15-29 ML/min
Rapidly Progressive Nephritic Syndrome with Diffuse Crescentic Glomerulonephritis
P-ANCA and MPO Antibodies Positive
Layman's terms : Renal (Kidney) Failure Level 4
Struggling For A Life Raft :Fighting Ever Forward
SECOND TACTICAL GOAL :
Maintaining a positive state of mind and my drive to live.
SECOND STRATEGY IMPLEMENTED :
Try, and even if I fail I'll go down fighting and to give in avails us nothing.
Life happens. The long version :
I am a chronic anemic and have learned to adapt to it. Due to the monetary constraints placed on me by my boys’ receiving Social Security Survivor BenefitsI had decided to go back and gain a certificate in Sustainable Agriculture through the Santa Rosa Junior College. Any position as a graphic designer, even part-time and I would make too much and the boys’ would lose their benefits. My eldest son absolutely requires us to keep his benefits and we do what we must.
My mental capacities, ability to eat, overall lethargy and other fun anemia side-effects had been slowly getting worse since last summer, but it was so gradual we all just adapted to it. Come the start of my classes, which we all hands on at Shone Farm, my mental and physical abilities were being severely impacted. My short term memory was greatly affected, it would take me hours to eat a single apple, I could do little more but sit there listlessly.
I had an appointment for speaking with my primary physician about my symptoms and receive clearance for having missed over a month of classes My eldest son, who was there for possible strep got me to explain the rest of my symptoms. My nurse practitioner immediately realized that something wasn’t right and had some blood tests done. Turns out that my kidney’s were only functioning at 30% in total and they were not sure why.
About two weeks went by and I was in the doctors at least once a week, they were closely monitoring me. March 23rd my nurse practitioner called and asked me to go into the emergency room because my total kidney function had dropped to 25%, 5% in 8 days. It was my eldest son’s birthday weekend but I didn’t make it past Monday. I had another appointment and was even in a worse state, she offered to call and ambulance for me. I gathered my two boys and went to the ER. Was admitted and the next day they did a kidney biopsy which gave me the diagnosis. The irony of it is that it had been Lupus nephritis, to which both of my boys have now tested positive for. Between traveling to all of my specialists, their specialists, and all of the changes in our life when we were just making it before has seriously knocked us for a loop.
Along with all of the stressors of having almost kicked the bucket I’ve had to deal with medical chaos all in a league of it’s own. As of March 25th, 2019 I was admitted to Sutter Santa Rosa Regional Hospital by my primary care, Jenifer Herman NP. While under Sutter’s care I was assigned Sandra Borrows MD, Nephrologist. Dr. Borrows has been wonderful, the problem comes with the fact that apparently Dr. Borrows is a ‘contract’ doctor and is not actually within the Sutter system. My diagnosis requires not only her help but also the oversight and treatment of an Oncologist / Hematologist as well as an infusion treatment to save my kidneys as much as they are able before more damage is done. Because of Dr. Borrows is a ‘contract’ doctor with Sutter she is unable to get me not only a Oncologist / Hematologist through Sutter but Dr. Borrows office is currently working on contacting a third hospital that may be able to give me an infusion that I need once a month. The referrals department not only never contacted me but simply dropped the ball entirely. Dr. Borrowed office had sent out a referral through Sutter for the Oncologist / Hematologist and had assumed it went through, because why would it not right? It didn’t. No one contacted Dr. Borrows office to tell them that there was an issue. I had a question about my very heavy medication and was able to speak to Dr. Borrows on the phone. At that time I asked her about the infusion treatment. She was confused as to why I hadn’t already seen someone.
I called Sutter, was passed from person to person. Nothing can be done because of Dr. Borrows being a ‘contract’ doctor. They have no offered to change my doctors, which I’m not against or for, nothing. They keep repeating that it is a technicality of a doctor they assigned me after being admitted to their hospital. They expressed surprise that I am taking control of my treatment but I am a sole surviving parent, single mother of two teenage boys and am 35 years old, death is NOT an option. What I have is terminal without direct doctor oversight. My diagnosis was given to me by Sutter Regional Hospital in Santa Rosa. I had wanted to stay within the Sutter System since I had had such a positive experience with them. My stay, as horrible as the reason was for being there was nothing but warm and welcoming in our time of need.
The presnidone helped me get my mental teeth back, but since my body was still so horribly lethargic all of that spunk went right to my brain and I felt almost manic and fed the anxious. That being said, when the presnidone puttered out after a few hours my brain felt like it was slowly being eaten away again (as was one of my most terrifying side effects) and caused me to panic. I happen to have the mouth of a sailor, so I cursed (a lot) and took advantage of every moment I could to figure out how to put my foot forward and inch along until I can find the sweet spot between meds, side effects, dietary necessities/restrictions, and level of activity. This Second Offense is damn near constant, I'm not going to lie. I was attending college classes for a certificate when all of this happened. I had to drop out, of course, but my passion for a sustainable lifestyle while able to maintain / adapt my way of living should be maintained. The fact that gardening, farmers markets and the like get me out doors and moving is all a plus. So, I looked up what I could that was free locally and booked some tickets for the next few months. I checked in with my CSA and caught up with what was going on. I am social for being an introvert. That being said, I knew I needed to get out and maybe join a group but not one for support from others suffering from this. I do not mentally process overly emotional people or situations well and would be detrimental in the short run rather than helpful. Something light and positive with no added pressure of being a pillars for others when I need to be the pillar for both myself and my kids. I also want to point out that I have a licensed therapist that I see on a biweekly basis. Someone who's outside opinion may shed light on areas that we may be lacking during periods of enormous emotional strain is key to surviving.
In the long run Sutter Santa Rosa Regional Hospital missed out on not only my using their services but a loyal customer of their services. I have been vocal online, on my website, have reached out to the local press sadly to no avail. I have since been accepted by St. Joseph’s Cancer Center but at extreme delay for my imperative medical treatment which was supposed to happen almost three weeks ago.
Before my chemo treatment on May 1st, my kidney function had slid back to be roughly mid 20%. Being that my anemia is siting at a 9.5, when 11 is hospital worthy, and I was in a worsening state. The Cytoxan / Chemo treatment was able to suppress my immune system enough that the glomeruli (antibodies) slowed or stopped creating the crescentic legions in my kidneys. Dr. Borrows stated the the legions themselves, from what they saw (via the kidney biopsy) was that there were some older lesion scarring. The fact that I have responded so well to treatment makes her think that the 45% beginning estimation may be off, but the fact that the scarring is so old - those sections of my kidneys will never be recovered. So, great news, bad news. Currently, she is going to stick with the plan of attack which is termed as "induction therapy." I'm going to research it a bit more and post something on the site. The plan is to continue the next 2 treatments of Cytoxan / Chemo and after my third treatment see where we're at on totally kidney functionality.
The good news, many folks with my diagnosis do not have it caught in time. I did, and now the doctors are working hard to save what of my kidneys they are able now. Whatever they are able to save now will last me for the rest of my life.
The next three to six months for us will be the most chaotic but, this and next month with the constant doctor appointments is the most dire. We had no reserve and my FASFA had been accounted for my gas for my classes and without that extra buffer almost any travel immediately puts us in the negative. Three to four doctors appointments, plus travel to San Francisco for more specialists add in all of the new expenses due to my illness are beyond what we are capable of covering. Add in that stress actually causes my symptoms to become even worse make for fun times. We just need help right now and get everything to the new normal.
Let's Break It Down
Rapidly Progressive : Obvious.
Nephritic Syndrome : A collection of different signs and symptoms that occur as a result of inflammation in the kidneys. It causes protein and red blood cells to leak from the bloodstream into the urine.
Glomerulonephritis (gloe-mer-u-low-nuh-FRY-tis) : Is inflammation of the tiny filters in your kidneys (glomeruli). Glomeruli remove excess fluid, electrolytes and waste from your bloodstream and pass them into your urine. Glomerulonephritis can come on suddenly (acute) or gradually (chronic).
Chronic Kidney Disease (CKD) Stage 4 Gfr 15-29 ML/min : Is advanced kidney damage with a severe decrease in the glomerular filtration rate (GFR) to 15-30 ml/min. It is likely someone with stage 4 CKD will need dialysis or a kidney transplant in the near future. As kidney function declines, waste products build up in the blood causing a condition known as uremia. In stage 4, a person is likely to develop complications of kidney disease such as high blood pressure, anemia (a shortage of red blood cells), bone disease, heart disease and other cardiovascular diseases.
Rapidly Progressive Glomerulonephritis (RPNG) : "Is a syndrome of the kidney that is characterized by a rapid loss of renal function, (usually a 50% decline in the glomerular filtration rate (GFR) within 3 months) with glomerular crescent formation seen in at least 50% or 75% of glomeruli seen on kidney biopsies. If left untreated, it rapidly progresses into acute renal failure and death within months." LINK
RPGN Side Effects Notes in Charts
Malar Rash : butterfly rash.
Hematuria : blood in urine.
Proteinuria :an excess of protein in the urine.
Absolute Anemia :crescent-shaped irregularities gaining size.By definition, anemia refers to an absolute reduction of the total number of circulating red blood cells (RBCs) (decreased: hemoglobin concentration, hematocrit.)
(All above Sutter Regional Health)
Normocytic Anemia : is caused by the breaking up of red blood cells (hematocrit and hemoglobin), meaning corpuscular volume (MCV) of 80–100 which is the normal range.
(Russian River Health)
Diagnosis’ Not Having To Do With RPGN
Mild Scoliosis : 1995 diagnosis.
Asthma : 1996 diagnosis.
Chronic Anemic : 1998 diagnosis.
(All above diagnosed by pediatrician)
Blepharitis :2017 diagnosed by Nina Ni MD.
(Eye Care Institute Santa Rosa)
Bullous Dermatitis : April 2017 & June 2018 documented photographed history / doctor visits.
Atopy :refers to the genetic tendency to develop allergic diseases such as allergic rhinitis, asthma and atopic dermatitis (eczema). Atopy is typically associated with heightened immune responses to common allergens, especially inhaled allergens and food allergens.
(All above Russian River Health)
Family Medical History
Heart Disease : Maternal Side / Mother was terminal (heart transplant recipient from University of Michigan) since I was 13 and passed March 11, 2011.
Brain, Breast and Lung Cancer : Maternal Side / Uncle (brain cancer) ; Grandmother (breast cancer) ; Grandfather (lung).
High Blood Pressure : Maternal Side / Mother and all 3 of her siblings as well as parents.
I did attempt to make contact with my Paternal parent, all I know is that autoimmune and kidney issues are not in his familial history.
Prednisone is a corticosteroid. In contrast to anabolic steroids (used by “bodybuilders”), corticosteroids are used in inflammatory conditions for their anti–inflammatory effects. They have a rapid onset of action, and profoundly affect many parts of the immune system as well as most other body systems. Corticosteroids are a cornerstone of treating most types of vasculitis, and are often used in combination with other immunosuppressive medications. LINK
Sulfamethoxazole-TMP SS Tablet 1xdaily Sandra Borrow MD, Nephrology Associates
Sulfamethoxazole and trimethoprim is a combination antibiotic used to treat ear infections, urinary tract infections, bronchitis, traveler's diarrhea, shigellosis, and Pneumocystis jiroveci pneumonia. LINK
Lisinopril is used to treat high blood pressure. Lowering high blood pressure helps prevent strokes, heart attacks, and kidney problems. It is also used to treat heart failure and to improve survival after a heart attack. LINKThe antihypertensive and renal effects of the angiotensin-converting enzyme inhibitor lisinopril were studied in a group of patients with moderate-to-severe hypertension and impaired renal function. LINK
Cytoxan (cyclophosphamide) is a cancer (chemotherapy) medication used to treat several types of cancer. Cytoxan is also used to treat certain cases of nephrotic syndrome (kidney disease) in children.LINK
Hydrocortisone Cream 1% use-as-needed Veronica Jordan MD, Sutter Santa Rosa Regional Hospital
Hydrocortisone topical is used to treat redness, swelling, itching, and discomfort of various skin conditions. Hydrocortisone is in a class of medications called corticosteroids. It works by activating natural substances in the skin to reduce swelling, redness, and itching. LINK
ANEMIA RELATED TREATMENT
Ferrous Sulfate (Iron) 325mg 2xdaily Jennifer Herman NP, Russian River Health Center
Folic Acid 1mg 1xdaily Jennifer Herman NP, Russian River Health Center
Vitamin C 500mg 2xdaily (take with Ferrous Sulfate) Jennifer Herman NP, Russian River Health Center
ASTHMA RELATED TREATMENT
Albuterol Inhaler use-as-needed Jennifer Herman NP, Russian River Health Center
Loratadine (Claritin) 10mg 1xdaily
BLEPHARTIS AND BLISTER TREATMENT
Triamcinolone 5% cream Jennifer Herman NP, Russian River Health Center
Zaditor Drops 2xdaily Nina Ni MD, Eye Care Institute