Timeline and Test Results

THIRD STRATEGY IMPLEMENTED :

Taking the point position and managing my own information.  

TIMELINE : Test Results and Life Events.

I think this breakdown was the hardest. I have very little concept of time so, I'm basing all of my events on dates of actual events that I can find and mark with absolute certainty. RPGN has such a short timeline from start to end that I want to be as open as possible. Mine was caught in time, others have not been as lucky.

 

Along with the labs and clinical visits, I’m going to thread in life events and stressors. Lupus is a semi-catch all and one of it’s triggers is stress. RPGN is not lupus but for prosperity sake I’m going to make notes along with my side effects and how they were impacting my day-to-day where applicable. All of my dates are based off of call records, bank and calendar dates, lab and health account appointments. 

 

THE BREAKDOWN : 

The goal of this entire page is to keep tack of what can be made note of. I'm going to be VERY personal on this page and probably disclose more information that another person would, but if my information is able to help someone else than it would have been worth the disclosure. 

LINKS for Definitions

May 14, 2019 : Boy's Pediatric Rheumatology Appointment UCSF with Nicole Lan Kay Ling MD

Okay, so today was enlightening. Dr. Ling helped to clarify what has been going on with my eldest son and sorted my youngest as well.

JUST TO RECAP :

Dorien, eldest son (Vegan, no processed foods / takes strength training classes though his high school.)

Dorien's toes had developed red round flat blisters 3 weeks after his top surgery 10/10/2018, which became purple blisters and overly sensitive toes. Now they're just a constant blue-purple and the color is dependent on room temperature. Our Nurse Practitioner considered it Raynaud's phenomenon which is a fairly standard side effect of top surgery. According to a vascular specialist the blood flow in his legs was just fine and his toes in no danger of anything worse than just being a blue-purple. During my health crisis we were informed by our Nurse Practitioner that Dorien had tested positive for Lupus. He has also been home sick with chest colds twice in the last two months and some of his blood tests regarding his liver were a bit off. Not sure of the specifics.

Aiden, youngest son (Raisin Bran, crackers, carrots and Chicken Pot Pie Soup / takes standard PE class.)

Aiden is less ill than Dorien, strangely enough. After Dorien tested positive we had Aiden tested as well. It turns out that he also tested positive for Lupus. No side effects, no strange tests otherwise.

TODAY'S UPDATE :

Dorien

Dr. Ling determined that Dorien is not positive for Lupus, but that he is ANA positive. She also confirmed as well as added to what what already suspected.

Diagnosis : ANA Antibody Positive; Raynaud's Phenomenon; Chilblain's ("pernio").

Medications : Fluocinonide (LIDEX) 0.5% Ointment, for reoccurring blisters.

Aiden

Dr. Ling determined that Aiden is not positive for Lupus, but that he is ANA positive.

Diagnosis : ANA Antibody Positive

ANA LINK,  RAYNAUD'S LINK,  CHILBLAIN'S LINK

May 13, 2019 : Labs / Quest Diagnostics

Labs were ordered by Dr. Barrows. 

CREATININE URINE 05/13/2019, ordered by Sandra Borrows MD

CREATININE 29 ; 20-275 Ref Range

 

PROTEIN TOTAL URINE 05/13/2019, ordered by Sandra Borrows MD

PROTEIN 21 ; 5-24 Red Range

Financial Stressors :

Picked-up HEAP, PG&E bill aide application.

Disability : DENIED, due to being a college student and not working at time of diagnosis.

Cal-Fresh :  DENIED, due to making $136 over the threshold amount. Having dropped from my college courses, due to my illness also seems to have gone against me.

Are we having fun yet?

May 10, 2019 : Clinic / Labs / Oncologist Appointment With Wayne Keiser MD, St. Joseph's Cancer Center 

Did some more labs before my appointment with Dr. Keiser, I don't have access to those yet. I need to fix that. We celebrated the 40% and had a good touching base. We discussed my serious crash after the last treatment. Being at a 9.5 on the anemia scale already, before treatment, was very difficult on my body. From how he explained it, one of the immune protectants that are infused before the Cytoxan is a steroid which ups what I'm already taking. The day after the infusion my body crashes back down. So, to counter said steroid crash we're going to upping my Presnidone intake and then slowly adjust it back. We'll see how the next treatment goes, which is scheduled for May 30, 2019, and play it by ear after that.

MEDICATION CHANGES : Presnidone DAY 1 AFTER CYTOXAN INFUSION 60mg 4xdaily; Presnidone DAY 2 AFTER CYTOXAN INFUSION 60mg 3xdaily; Presnidone DAY 3 AFTER CYTOXAN INFUSION 60mg 2xdaily.

May 8, 2019 : 40% Total Kidney Function Reached! / Clinic / Appointment Sandra Borrows MD, Nephrology Associates

Okay, so amazing and great news! Life's stressors are superseding my excitement and relief but hitting 40% after the first chemo treatment is AMAZING! I'm going to be updating the site this next week with the information that I'm now working with.

Overall this is the synopsis of my appointment with Dr. Borrows :

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.

MEDICATION CHANGES : Presnidone 60mg 2xdaily and Sulfamethoxazole-TMP SS Tablet 1xdaily.

Come June 1, 2019 Presnidone 60 mg 1xdaily.

May 7, 2019 : Labs / Dental Appointment / Stressors / Reaching Out To The Media

Labs were taken for my appointment tomorrow with Dr. Borrow's. I wasn't able to go before today, so hopefully they'll arrive to her office in time. Dental... I did try to inform them of my new diagnosis, but they never asked for details. I also never pressed issue. Long term health is my current goal and getting what I can fixed is my aim... hopefully it doesn't come back to bite me. Several emotional stressors today having to do with our finances. I'm trying to get them ironed out asap so as to lesson the stress. One issue has been deferred for a small amount of time, the other three are looming. My boys' are of the opinion that I need to reach out more to get the Sutter issue dealt with, one of said looming issues. Media contacting : left a message for Martin Espinoza of the Press Democrat; sent and email tips to NBC Bay Area, Northern California Public Media, the Sonoma Sun, KPIX CBS SF Bay Area, and ABC / KGO. 

COMPLETE BLOOD CELL COUNT 05/07/2019, ordered by Sandra Borrows MD

WHITE BLOOD CELL COUNT 10.5 ; 3.8-10.8 Ref Range

RED BLOOD CELL COUNT 3.23 ; 3.80-5.10 Ref Range

HEMOGLOBIN 10.0 ; 11.7-15.5 Ref Range

HEMATOCRIT 29.1 ; 35-45 Ref Range

MCV 90.1 ; 80-100 Ref Range

MCH 31.0 ; 27-33 Ref Range

MCHC 34.4 ; 32-36 Ref Range

RDW 14.1 ; 11-15 Ref Range

PLATELET COUNT 204 ; 140-400 Ref Range

MPV 8.7 ; 7.5-12.5 Ref Range

ABSOLUTE NEUTROPHILS 9,776 ; 1,500-7,800 Ref Range

ABSOLUTE LYMPHOCYTES 536 ; 850-3,900 Ref Range

ABSOLUTE MONOCYTES 179 ; 200-950 Ref Range

ABSOLUTE EOSINOPHILS 0 ; 15-500 Ref Range

ABSOLUTE BASOPHILS 11 ; 0-200 Ref Range

 

KIDNEY FUNCTION PANEL 05/07/2019, ordered by Sandra Borrows MD

UREA NITROGEN, BLOOD (BUN) 26 ;  7-25 Ref Range

GLUCOSE 89 ; 70-99 Ref Range

CREATININE 1.66 ;  <1.10 Ref Range

eGFR NON-AFR. AMERICAN 40 ; > OR = 60 Ref Range

eGFR AFRICAN AMERICAN 46 ; > OR = 60 Ref Range

BUN/CREATININE RATIO 16 ; 6-22 Ref Range

SODIUM 136 ; 135-146 Ref Range

POTASSIUM 4.7 ; 3.5-5.3 Ref Range

CHLORIDE 102 ; 98-110 Ref Range

CARBON DIOXIDE 27 ; 20-32 Ref Range

CALCIUM 8.4 ; 8.5-10.1 Ref Range

PHOSPHORUS 3.4 ; 2.5-4.5 Ref Range

ALBUMIN 3.7 ; 3.6-5.1 Ref Range

May 6, 2019 : Side Effects / St. Joseph's Cancer Center

Had a delightful two hour bloody nose, not gushing, just constant dripping. Was finally able to get a hold of Sheryl and schedule my ten day follow-up visit from the Cytoxan / Chemo treatment.

May 3, 2019 : Contacted 7 On Your Side / Contractors Are Back / Reaching Out To Medical Journals And Research Groups / St. Joseph's Cancer Center

Several stressors down and a few up. Sent and email to 7 On Your Side since I have yet to hear from the Press Democrat. I feel better sending it after hours on Friday so that I have time to adjust to having made the initial contact. The contractor came back and moved around some of the left over mess that has been stressing us all out for so long. They've also continued the work on my roof, so I may have working gutters at some point. I have also started reaching out to several journals and well as nephrology research groups. We'll see where it goes. I have also to hear back from St. Joseph's regarding my 10 day check up after my first chemo treatment. Spoke with my attending nurse, but was unable to get a hold of Sheryl in scheduling.

May 1, 2019 : First Of Three Cytoxan (Chemo) Treatments Down, St. Joseph's Cancer Center

Six and a half hours at St. Joseph's Cancer Center wasn't as horrid as I feared. When my mom went through chemo is was horrendous. Mine went so much smoother and they were very careful of just how I was feeling through out the procedure, which I immensely appreciated! Next time, must wear socks along with some slip on shoes, had the slip ons down. I also am so glad I didn't have to drive myself, thank you so much RJ and Katie! I would not have been able to make it home on my own. So, insanely tired and relieved after the infusion.

MEDICATION CHANGES : Ondansetron ODT 8mg 2xDaily after Cytoxan IV Infusion and Prochlorperazine (Nausea) 10mg

use-as-needed for breakthrough nausea.

April 30, 2019 : Rescheduling UCSF Pediatric Rheumatology Appt, Again

Maybe third time is the charm? I emailed them first thing and am hoping to hear back before Thursday, when I'm supposed to take the boys down for their appointment right after my first chemo treatment. Neither kiddo is game, for me to do much of anything come Thursday or Friday. I think they're as nervous as I am.

April 29, 2019 : Sutter Call Back / HealthPlan / Disability Orientation / Wayne Keiser MD, St. Joseph's Cancer Center / Finally Infusion Appointment / UCSF Rescheduling

So, much has happened today. It’s been emotional whiplash.

 

Sutter CEO Mike Purvis forwarded my email to Emmy Montgomery, whom I had left a message for on April 15th. I gave her Shanda’s name and a quick synopsis to events. She and her counter part, Arlene in Novato, will be looking into exactly what went wrong on their end. Nice, to have some action, too late for them to make a difference for me but I hope they can change and not let this bs happen to anyone else.

 

According to HealthPlan and my case manager, Alveta, Dr. Keiser’s office has still not put anything in for my treatment. No record of the original doctors visits and no infusion pending. I have a phone appointment with one of Dr. Keiser’s nurses about the chemo and other side effects later today, so yeah. Also, the anti-nausea medication that Dr. Keiser’s office was supposed to call into my pharmacy, also not there, not even called in. Joy.

 

Disability Orientation was difficult very difficult to get to because I felt so horrid. I went early to give my time recoup before the orientation. Apparently I went too soon since I have to wait to be approved/denied before attending. I was told to go, so I went and it was the next place TO go for the steps in everything. Suzanne there was a delight and I did get a great hug.

 

Back onto a phone call with HelathPlan and they’re trying to get a hold of folks at Dr. Keiser’s office, but have been unsuccessful. We try a three way call with my contact nurse as well as the new patient coordinator there and no picks up. 

 

Cue my struggle through a grocery store and then attempted hurry home for my 4pm phone call that both myself and my HelathPlan case manager are banking to get someone at Dr. Keiser’s to figure out what’s going on. 

 

Teresa, from Dr. Keiser’s was very professional, confused and determined to look into why my infusion is NOT pending with my insurance. The conversation is eye opening and frustrating because I’ll need a ride for the first chemo appointment. The chemo infusion will take in the ballpark of 4 hours I also will need to give myself at least two days of down time afterwards because such high dosage. More fun times.

 

5:15 pm receive a call from Dr. Keiser’s office, my chemo is now approved and is on Wednesday at 8:45 am. Let’s hope those nausea medications are now actually at my pharmacy. An after speaking to Dorien he insists that I NOT attempt to drive him and his brother to UCSF on Thursday for their Rheumatology appointment but see if we can change it to next week. I don’t like pushing back their appointment even more, but if I am supposed to feel even weaker than how I already feel, yeah, not gonna make it there.

April 27, 2019 : Food Pantry, Thank You Kim Johnson!

Kim Johnson, who I had an appointment with the Thursday before last runs a Food Pantry. She also connected me to several others. The diet that is required of me to maintain my kidney health is almost all fresh produce only. On top of that having two teenage boys, one who eats only non-processed foods in great bulk quickly eats into our household funds. Having the option and help of Kim is such a wonderful thing for us! We are so thankful for her time and caring thoughts! Thank you, Kim!

April 26, 2019 : Wisdom Teeth Out / HealthPlan Case Manager Secured / Sutter CEO Emailed / Health Stats Sliding Backwards

Had my wisdom teeth out today. Trying to catch up on stuff that I was too ill to get accomplished before. I'm slowly going towards elevating my overall health and I feel as though that was a step in the right direction. Secured and spoke to my HealthPlan case manager, Alveta. No pending infusions or anything that she could see. Nor mention of my most recent Oncology visit at St. Joseph. I have a phone conversation scheduled with St. Jospeh's on site nurse to go over more of the side effects of the chemo on Monday, so the fact that there isn't anything pending on my insurance is extremely strange. I am so frustrated with what is going on... or lack thereof. Sent an email to Mike Purvis and his EA over at Sutter Santa Rosa Regional Hospital. Have not heard back from him as of yet, nor Chis Smith or Christine Barnett of the Press Democrat. Perhaps,  7 On Your Side is where I should go? I am very leery of it though. Action is needed, especially if the delay of this treatment is causing my stats to fall, which they have. My stats have started sliding backwards and I’m at a 9.5 on the anemia scale, 11 is hospital worthy. My kidney function is also lower but the nurse I spoke to didn’t know how to translate it from the test number to the percentage of kidney function. I’ve been repeatedly checking the Healow app for the updated lab data but nothing as of yet. Sutter needs to be held accountable for their actions and lack thereof. 

April 25, 2019 : Thank You Pegasus Theater Company / Financial Stress

The boys and I have been under enormous financial stress and the Pegasus Theater Company, who I had been set to help with some graphic work for their next show, gave to us without a second thought. It was so kind and unexpected. We're so grateful for not only their positive thoughts but for their contribution towards my medical. At this point my medical is covered, but the constant doctor appointments which require gas and all of the other added expenses with my illness are quickly racking up. Positive thoughts though, I have applied to a few places for a bit of help and am trying to be patient. trying to be patient with everything.

April 24, 2019 : Oncology Appointment Wayne Keiser MD, St. Joseph's Cancer Center / Requested A Case Manager Through HealthPlan

One step forward! Now that St. Joseph's has accepted me as a patient I am one step closer to the Cytoxan (Chemo) IV Infusion that was supposed to happen almost two and a half weeks ago through Sutter. Dr. Keiser was delightful and he did understand my condition and the time sensitive nature of it. Right now we're just waiting on my insurances approval. More waiting, joy. It has been strongly recommended to me to request a case manager through my insurance, so I've gone ahead and done that through my patient portal. It gave me a three day waiting period, so another step forward. I hope.

April 23, 2019 : Finally An Oncologist Appointment / HealthPlan Case Manager Inquiry / DSLC Orientation Planned / Community Support

Okay, so St. Joseph Hematology & Oncology was able to accept me as a patient for my Cytoxan Infusion! I see their Oncologist, Wayne Keiser MD tomorrow! Their new patient coordinator, Elaine, was so sweet and she said that Dr. Kaiser is familiar with my diagnosis which is beyond wonderful! So very relieved! I'll meet with him tomorrow and then they're going to get me in for the infusion ASAP! There did seem to be a bit of confusion. I understood that I would need a Hematologist / Oncologist, not only for infusion overbite but because the nature of my condition. When I mentioned that what I have is an autoimmune disease and my understanding of what the next steps are that seemed to clear things up. I contacted my Healthplan provider to try and gain a case manager. The auto response was 3 business days, so fingers crossed. Made reminders of the DSLC orientation to call head and attend. The support from both Waccob and Nextdoor has been so very much appreciated! I am still actively working to fix the Sutter issue so that this does not happen to anyone else!

April 22, 2019 : Boys' Pediatric Rheumatology Appointment Made / DMHC Complaint Kickback / Disability Paperwork / Labs / Still Waiting On Treatment

The boys' now have a confirmed appointment for UCSF come the first of next month! My complaint to DMHC was kicked back because my issue is with  a medical provider and not my medical coverage. As I stated before my medical coverage has been wonderful! I was able to finish up my Disability paperwork with my primary and checkin with her as to where everything sits. I also wasn't feeling well and they did some labs. My fear is that the added stress from the Sutter nonsense and the prolonging of the much needed treatment has diminished my rise back to 36% total kidney functionality. I really hope it's just a baseless fear. I also spoke to my Nephrologists office and they are still waiting to hear back from one nearby clinic. I have all of my fingers and toes crossed. There is the strong possibility that I'll need to be admitted before I can even get my Cytoxan Infusion, so very frustrating.

COMPLETE BLOOD CELL COUNT 04/22/2019, ordered by Jennifer Herman NP

WHITE BLOOD CELL COUNT 9.2 ; 3.8-10.8 Ref Range

RED BLOOD CELL COUNT 3.02 ; 3.80-5.10 Ref Range

HEMOGLOBIN 9.1 ; 11.7-15.5 Ref Range

HEMATOCRIT 27.2 ; 35-45 Ref Range

MCV 90.1 ; 80-100 Ref Range

MCH 30.1 ; 27-33 Ref Range

MCHC 33.5 ; 32-36 Ref Range

RDW 14.1 ; 11-15 Ref Range

PLATELET COUNT 183 ; 140-400 Ref Range

ABSOLUTE NEUTROPHILS 8556 ; 1,500-7,800 Ref Range

ABSOLUTE LYMPHOCYTES 515 ; 850-3,900 Ref Range

ABSOLUTE MONOCYTES 120 ; 200-950 Ref Range

ABSOLUTE EOSINOPHILS 0 ; 15-500 Ref Range

ABSOLUTE BASOPHILS 9 ; 0-200 Ref Range

 

BASIC METABOLIC PANEL (BMP) 04/22/2019, ordered by Jennifer Herman NP

UREA NITROGEN, BLOOD (BUN) 26 ;  7-25 Ref Range

GLUCOSE 90 ; 70-99 Ref Range

CREATININE 2.34 ;  <1.10 Ref Range

eGFR NON-AFR. AMERICAN 26 ; > OR = 60 Ref Range

eGFR AFRICAN AMERICAN 30 ; > OR = 60 Ref Range

BUN/CREATININE RATIO 11 ; 6-22 Ref Range

SODIUM 133 ; 135-146 Ref Range

POTASSIUM 5.0 ; 3.5-5.3 Ref Range

CHLORIDE 103 ; 98-110 Ref Range

CARBON DIOXIDE 22 ; 20-32 Ref Range

CALCIUM 8.2 ; 8.5-10.1 Ref Range

April 19, 2019 : Postponing Dorien's UCSF Pediatric Rheumatology Appointment Until Aiden Can Have His As Well.

Driving to UCSF right now where I am at medication side effect wise isn't the greatest idea. I'm already nervous on highways due to family members perishing in auto accidents, so already. not fun. Apparently the referrals department at Russian River Health has not done anything with the request from Jennifer Herman for Aiden's UCSF Pediatric Rheumatology referral. Jennifer had put it in and the nurse I spoke to put the request through again for me. If I we can do both appointments at once that would be best, so I've spoken with both RRHC as well as the UCSF Pediatric Rheumatology to postpone Dorien's appointment for when Aiden's is able to happen. Just trying to get my ducks in a row, less ducks needed though.

April 19, 2019 : Therapy

The irony is that my current therapist, Lisa, had only seen me perhaps 2-3 times before all of this occurred. The destruction of my norm. To say that she has risen to the occasion would be an understatement. I very much appreciate her mind and wit and her being right there with me through this emotional roller coaster. I took a little bit of time for me, went to my favorite cafe and just enjoyed for a moment before once again hurrying along. I needed t o take a breath. I cannot lose it. I have children and their stability is more important to me than almost anything else. My world revolves wound them, it has since I decided to keep them both even given with how young I was. Them first, always.

April 18, 2019 : Dorien's Clinical Visit / Jennifer Herman NP

Being that Dorien is supposed to have an appointment on the 23rd he is in for labs and a check-in with Jennifer who is a hero in our household. I also informed Jennifer about the technicalities with Dr. Borrows. She assured me that her team would help take over and help take matters into hand. Thank goodness, I need to lessen the stress. I am what feels like my tipping point.

April 18, 2019 : I Contact Catherine Barnett at the Press Democrat

It may be seen as a douche move, but the depth of my concern of Sutter allowing this to happen to others moves me to action. I've never been one not to fix something when it's broken. I am obviously unable to fix this, so if they cannot alert the local area to this happening to people, then perhaps they can point me in the direction of someone who can.

April 18, 2019 : Meeting with Kim Johnson with West County Health

Due to the stress of our financial situation Jennifer Herman with Kim Johnson. Kim was absolutely wonderful to speak with! She spent hours working her magic to help my boys and I. I truly look forward to getting to know her better in the future, simply a beautiful human being.

April 18, 2019 : Call from Sandra Borrows MD, Nephology Associates

Julie informs me that due to the administrative issue with Sutter Systems that she has been on the phone with 3 other outlying hospitals in an attempt to get me my extremely important Cytoxan IV Infusion. She was waiting to hear back rom one other, but the other option was to have me again admitted to Sutter Santa Rosa Regional Hospital and given the infusion that way. Why is this administrative issue effecting the treatment I need to live? Has this happened to someone else? How many people? How is this type of occurrence okay and why isn't Sutter attempting to fix it?

April 17, 2019 : Clinical / Redwood Family Dermatology Ligaya Park MD

I am finally able to make the appointment from my dime size blisters back in June 2018. Dr. Park is a breath of fresh air, sadly any testing that could have been done is now out due to the Presnidone that is keeping my kindeys alive. She does tell me that my Lisinopril has a skin reaction side effect and that I need to stay out of diet sunlight. I have a garden, was going to SRJC for a Sustainable Agriculture Certificate and I can't be in direct sunlight. Okay... overcome and adapt. Sun protectant clothing, here I come!

April 16, 2019 : Call Sandra Borrows MD, Nephology Associates

I call and speak to Julie about what I spoke to Sutter Santa Rosa Regional Hospital about. She is obviously confused and lets me know that she'll look into it and we'll get me my IV Cytoxan Infusion. I needed to wait a day to calm down. I barely slept.

April 15, 2019 : Call Sutter Santa Rosa Regional Hospital Hematology / Oncology Center

After giving up on speaking to Shanda I call the main Hematology / Oncology not only to arrange an appointment but to file a complaint against the patient coordinator. I speak Stacey, Jessica and Lettie and all not only seem surprised that I am taking an active roll in my own treatment but sympathize with what the situation is turning out to be. My last stop was to Emmy Montgomery in Complaints.

Apparently, even though Sandra Borrows MD was assigned to me via Sutter Santa Rosa Regional Hospital during my admittance she is a 'contract' doctor. Being a contract doctor within the Sutter System she is not only unable to refer me to other specialists within that Sutter System the referral that Shanda did actually handle was simply dropped. Shanda did not even inform Dr. Borrows office, which is an outshoot of Sutter Regional, that the referral was not going to move forward or that there was even a problem. Who does that? Each woman I spoke to was very polite, no one offered any suggestions or other options I was simply passed to the next person.

So, because of an administrative snafu which has nothing to do with me I am unable to gain treatment. Treatment that I need desperately to save what percentage of my kidneys I can. This is an immediate concern, to say that I am upset at this point is a ridiculous understatement. I can only really say that I am so very happy that the boys are at school. My body is shaking, my heart is hammering and even my breathing is ragged even as I stand in place.

April 15, 2019 : Call Shanda, New Patient Coordinator Sutter Santa Rosa Regional Hospital Hematology / Oncology Center

Still goes directly to voicemail.

April 14, 2019 : I Clean Most of What the Contractors Left Behind

Control of my environment. I started on the inside, parts of a room or rooms at a time. Thank you, Presnidone! My body is still so, so very sore, but I am determined with what energy I have to clean my house from top to bottom. The boys are stressed out with me. My mind is so very clear and for me that part is the biggest miracle. I am so very stressed but I am aware of everything rather than in a mental fog.

April 12, 2019 : Call Shanda, New Patient Coordinator Sutter Santa Rosa Regional Hospital Hematology / Oncology Center at Two Different Times

Still goes directly to voicemail. I leave one other message. The Cytoxan IV Infusion is extremely important to my overall kidney survival.

April 11, 2019 : Call Sutter Santa Rosa Regional Hospital Hematology / Oncology Center

Am redirected to Shanda's voicemail.

April 10, 2019 : Call to Sandra Borrows MD / Confusion with Sutter Santa Rosa Regional Hospital Hematology / Oncology Center

I had a question regarding my Presnidone, the bottle said 1 pill 3xdaily and it was seriously messing with my sleep cycle. I spoke to my local pharmacist before contacting my doctor. I was able to speak on the phone with Dr. Borrows and she clarified all 60mgs in the morning. While I had her on the phone I asked about my infusion. She seemed confused that I didn't already have an appointment with Hematology / Oncology through Sutter. I got the number for new patients and was sent directly to the new patient coordinators, Shanda, and left her a message. Time is of the essence.

April 9, 2019 : Aiden Tests Positive for Lupus

So, first my eldest son and now my youngest son test positive for Lupus but not me. At least, if one of us were to get something worse I am very, very relieved that it is me and not them. Dorien has an appointment at UCSF Pediatric Rheumatology for later this month. Now they both will. According to Russian River Health Center Aiden tests positive but nothing else from his blood work came back strange.

April 6, 2019 : I Finally Lookup My Diagnosis

My first blog post is this event. I hadn't realized just how close I came to dying. I am glad the doctors hadn't explained it. The stark realization needed to be done on my own. I have two teenage boys entirely dependent on me. Living is not an option, it is a must.

April 5, 2019 : Attend First Qigong Class Through West County Health

April 4, 2019 : Call from Sandra Borrows MD / Total Kidney Function Up To 36%!

April 3, 2019 : Clinic / Sandra Borrows MD, Nephrology Associates

Dr. Borrows is delightful and to the point and during the visit she gives me my diagnosis : Rapidly Progressive Nephritic Syndrome with Diffuse Crescentic Glomerulonephritis. It goes right over my head, of course. I make a note to go back when I'm ready to tackle that, and focus on the game plan. The plan is : to have Cytoxan once a month for 3 months; go from 60mg Presnidone to 40mg the next month and down to 20mg. A Hematologist / Oncologist will need to over see the Cytoxan infusion, she explained that since my disease is an autoimmune and is blood related that I would need one anyways and give me a referral. The downside she explains is that they have a diagnosis but it really isn't a why, just a side effect of something. She explains that they may not know for a few months and that the goal is to gain as much of my kidney function back as possible, which is why treatment is so hardcore. I may never be able to get above 40% back but even that is something! Time is of the essence for how much we are able to save with not only the medication but with my diet and exercise as well. Dr. Barrows' office also helps me gain an appointment with their on staff nutritionist. We have a plan of action and finally some answers.

COMPREHENSIVE METABOLIC PANEL 04/03/2019, ordered by Sandra Borrows MD

UREA NITROGEN, BLOOD (BUN) 26 ;  <25 Ref Range

GLUCOSE 106 ; 70-99 Ref Range

CREATININE 1.79 ;  <1.10 Ref Range

eGFR NON-AFR. AMERICAN 36 ; > OR = 60 Ref Range

eGFR AFRICAN AMERICAN 42 ; > OR = 60 Ref Range

SODIUM 136 ; 135-146 Ref Range

POTASSIUM 4.7 ; 3.5-5.3 Ref Range

CALCIUM 8.7 ; 8.5-10.1 Ref Range

PROTEIN, TOTAL 6.6 ; 6.1-8.1 Ref Range

ALBUMIN 3.6 ; 3.2-4.7 Ref Range

 

PHOSPHOROUS LEVEL 04/03/2019, ordered by Sandra Borrows MD

PHOSPHOROUS 3.6 ; 2.5-4.5 Std Range

 

CREATININE, URINE 04/03/2019, ordered by Sandra Borrows MD

CREATININE URINE 40 ; 20-275 Std Range

 

PROTEIN TOTAL URINE 04/03/2019, ordered by Sandra Borrows MD

PROTEIN 74 ; 5-24 Std Range

 

URINALYSIS WITH MICROSCOPIC EXAM 04/03/2019, ordered by Sandra Borrows MD

SPECIFIC GRAVITY 1.009 ; 1.001-1.035 Std Range

PH 7.0 ; 5.0-7.0 Std Range

COLOR Yellow

APPEARANCE Clear

LEUKOCYTE ESTERASE Trace ; Neg Std Range

OCCULT BLOOD 3+ ; Neg Std Range

PROTEIN +2 ; Neg Std Range

KETONES Neg ; Neg Std Range

BILIRUBIN Neg ; Neg Std Range

RBC > OR = 60 ; < OR = 2

EPITHELIAL CELLS None Seen

COMPLETE BLOOD CELL COUNT 04/03/2019, ordered by Sandra Borrows MD

WHITE BLOOD CELL COUNT 21.1 ; 3.8-10.8 Ref Range

RED BLOOD CELL COUNT 3.49 ; 3.80-5.10 Ref Range

HEMOGLOBIN 10.3 ; 11.7-15.5 Ref Range

HEMATOCRIT 30 ; 35-45 Ref Range

MCV 86.0 ; 80-100 Ref Range

MCH 29.5 ; 27-33 Ref Range

MCHC 34.3 ; 32-36 Ref Range

RDW 13.9 ; 11-15 Ref Range

PLATELET COUNT 416 ; 140-400 Ref Range

ABSOLUTE NEUTROPHILS 18,589 ; 1,500-7,800 Ref Range

ABS. EOSINOPHILS 0 ; 15-500 Ref Range

 

KIDNEY FUNCTION PANEL 04/03/2019, ordered by Sandra Borrows MD

UREA NITROGEN, BLOOD (BUN) 27 ;  <25 Ref Range

GLUCOSE 107 ; 70-99 Ref Range

CREATININE 1.80 ;  <1.10 Ref Range

eGFR NON-AFR. AMERICAN 36 ; > OR = 60 Ref Range

eGFR AFRICAN AMERICAN 42 ; > OR = 60 Ref Range

SODIUM 133 ; 135-146 Ref Range

POTASSIUM 4.8 ; 3.5-5.3 Ref Range

CHLORIDE 98 ; 98-110 Ref Range

CALCIUM 8.8 ; 8.5-10.1 Ref Range

PHOSPHOROUS 3.5 ; 2.5-4.5 Ref Range

ALBUMIN 3.8 ; 3.2-4.7 Ref Range

MEDICATION CHANGES : Presnidone 60mg 1xdaily / Sulfamethoxazole-TMP SS Tablet 2xdaily / Lisinopril 5mg 1xdaily / Cytoxan 0.5gm IV 1x for 3 months

March 29, 2019 : I Begin Researching Kidney Diet Specifics

Even the hand packet that Sutter gave to me upon discharge is rife with conflicting information. What is perfectly safe to eat on one page is a NO on the next. My mind is less muddled, far less pain more just throughly exhausted. Very simlilar to moving through molasses. 

March 28, 2019 : Out-Patient IV Infusion at Sutter Santa Rosa Regional Hospital

It was actually pleasant. Eating a meal through the IV helped manage with it. 

MEDICATION : IV Infusion Salumedrol 100ml and Presnidone 60mg 1xdaily

March 27, 2019 : Second Day in Sutter Santa Rosa Regional Hospital

I am discharged later in the day, thankfully. My boys were well looked after but nothing comforts you like being there in person rather than just in spirit. They are still waiting on the results, but my stats are no longer falling. I need to return the next day for my third infusion via out patient, which is just fine! I'll follow up with Sandra Barrows MD, the Nephrologist assigned to me through Sutter Santa Rosa Regional Hospital at her office Nephology Associates as well as with Jennifer Herman NP for my primary care. Prescriptions of : Hydrocortisone Cream 1% and Prednisone 60mg a day in hand I very, very slowly make my way home. Just to note, the pain is still persisting and I have to constantly shift to accommodate it, but it does seem to be lessoning. On the other hand an old leg injury is acting up causing my leg to be tight. The wonderful ladies on the floor asked a gal to come and doe message on my feet and ankles, which helped so, so very much!

HISTONE ANTIBODY 03/27/2019, ordered by Sandra Borrows MD

HISTONE AB, QUAL <1.0 Negative

 

URNIE TEST, MICROSCOPIC EXAM 03/27/2019, ordered by Sandra Borrows MD

URINE WHITE BLOOD CELLS 0-2 ; 0-5 Std Range

URINE RED BLOOD CELLS 50-100 ; 0-2 Std Range

URINE BACTERIA Occasional 

 

COMPREHENSIVE METABOLIC PANEL 03/27/2019, ordered by Benjamin Fritz MD

UREA NITROGEN, BLOOD (BUN) 29 ;  <25 Ref Range

GLUCOSE 140 ; 70-99 Ref Range

CREATININE 2.53 ;  <1.10 Ref Range

eGFR NON-AFR. AMERICAN 26 ; > OR = 60 Ref Range

eGFR AFRICAN AMERICAN 30 ; > OR = 60 Ref Range

SODIUM 136 ; 135-146 Ref Range

POTASSIUM 5.1 ; 3.5-5.3 Ref Range

CALCIUM 8.6 ; 8.5-10.1 Ref Range

PROTEIN, TOTAL 7.3 ; 6.1-8.1 Ref Range

ALBUMIN 3.1 ; 3.2-4.7 Ref Range

 

PHOSPHORUS LEVEL 03/27/2019, ordered by Benjamin Fritz MD

PHOSPHORUS 3.4 ; 2.5-4.9 Std Range

 

MAGNESIUM LEVEL 03/27/2019, ordered by Benjamin Fritz MD

MAGNESIUM 1.9 ; 1.8-2.4 Std Range

 

COMPLETE BLOOD CELL COUNT 03/27/2019, ordered by Benjamin Fritz MD

WHITE BLOOD CELL COUNT 4.2 ; 3.8-10.8 Ref Range

RED BLOOD CELL COUNT 2.96 ; 3.80-5.10 Ref Range

HEMOGLOBIN 8.4 ; 11.7-15.5 Ref Range

HEMATOCRIT 25.1 ; 35-45 Ref Range

MCV 85 ; 80-100 Ref Range

MCH 28.4 ; 27-33 Ref Range

MCHC 33.5 ; 32-36 Ref Range

RDW 12.8 ; 11-15 Ref Range

 

SJOGREN’S ANTIBODY (SSA & SSB) SCREEN 03/27/19, ordered by Sandra Borrows MD

SJOGREN’S SCRN, QUAL. Positive ; Negative Ref Range

SSA ANTIBODY <0.2 ;  <0.1 Std Range

SSB ANTIBODY  <0.2 ;  <0.1 Std Range 

MEDICATION : IV Infusion Salumedrol 100ml and Presnidone 60mg 1xdaily

March 26, 2019 : First Day in Sutter Santa Rosa Regional Hospital / Kidney Biopsy

It's my eldest sons 17th birthday and it's not Lupus nephritis. They aren't certain as to what it is just yet, but that it's shutting down my kidneys and happens to be similar to Lupus an autoimmune disease. The nurses and other folks on staff at Sutter are wonderful, a warm existence as our life train wrecks. Their warm and helpful presence was truly a comfort, not even minding when a friend dropped off my teenage boys for several hours just so that they could be with me. The prednisone allowed me some energy back, my mind felt a little less foggy and my appetite was back. My eldest son was actually weirded out that I was able to finish off some food from an actual meal.

CHEST X-RAY, 2 VIEWS  03/26/2019, ordered by Benjamin Fritz MD

INDICATIONS Asthma

FINDINGS Normal

LUNGS Clear, normally inflated

BONES Mild thoracolumbar curvature concave to the left, positioning versus mild scoliosis.

CONCLUSION No acute disease

 

ANA IFA SCREEN W/RFLX TO TITER/PATTERN 03/26/2019, ordered by Alexander Lam MD 

ANA SCRN, IFA Positive ; Neg Std Range

ANA PATTERN/TITER Speckled 1:160 / Homogeneous 1:160

 

ANCA VASCULITIDES 03/26/2019, ordered by Alexander Lam MD 

PROTEINASE 3 AB <1.0 ; <1.0 Std Range

MYELOPEROXIDASE AB 4.2 ; <1.0 Std Range

 

C3 COMPLEMENT 03/26/2019, ordered by Alexander Lam MD 

C3 COMPLEMENT COMP 132 ; 90-207 Std Range

 

C4 COMPLEMENT 03/26/2019, ordered by Alexander Lam MD 

C4 COMPLEMENT COMP 22.7 ; 17.4-52.2 Std Range

 

DS DNA ANTIBODY 03/26/2019, ordered by Alexander Lam MD 

DSDNA AB 1 ; <5 Std Range 

HEPATITUS B SURFACE ANTIBODY TEST (IMMUNITY) 03/26/2019, ordered by Alexander Lam MD 

HEP B SURFACE AB 54.64 (implies immunity) ;  >9.99 Std Range

 

HEPATITIS C ANTIBODY TEST 03/26/2019, ordered by Alexander Lam MD 

HEPATITIS C ANTIBODY Non Reactive ; Non Reactive Std Range

 

GLOMERULAR BASEMENT MEMBRANE ANTIBODY IGG 03/26/2019, ordered by Alexander Lam MD

GBM AB <1.0 ; <1.0 Std Range

 

COMPLETE BLOOD CELL COUNT 03/26/2019, ordered by Tara Dian Scott MD

WHITE BLOOD CELL COUNT 5.8 ; 3.8-10.8 Ref Range

RED BLOOD CELL COUNT 2.95 ; 3.80-5.10 Ref Range

HEMOGLOBIN 8.3 ; 11.7-15.5 Ref Range

HEMATOCRIT 25.1 ; 35-45 Ref Range

MCV 85 ; 80-100 Ref Range

MCH 28.1 ; 27-33 Ref Range

MCHC 33.1 ; 32-36 Ref Range

RDW 13.0 ; 11-15 Ref Range

 

BASIC METABOLIC PANEL 03/26/2019, ordered by Tara Dian Scott MD

UREA NITROGEN, BLOOD (BUN) 25 ;  <25 Ref Range

GLUCOSE 80 ; 70-99 Ref Range

CREATININE 2.36 ;  <1.10 Ref Range

eGFR NON-AFR. AMERICAN 26 ; > OR = 60 Ref Range

eGFR AFRICAN AMERICAN 30 ; > OR = 60 Ref Range

SODIUM 140 ; 135-146 Ref Range

POTASSIUM 4.1 ; 3.5-5.3 Ref Range

CALCIUM 8.3 ; 8.5-10.1 Ref Range

PROTEIN, TOTAL 7.0 ; 6.1-8.1 Ref Range

MEDICATION : IV Infusion Salumedrol 100ml and Presnidone 60mg

March 25, 2019 / Evening : Admitted to Sutter Regional Hospital as arranged by Jennifer Herman NP

The Emergency Room's Alexander Lam MD was delightfully to the point. He had pointed out the rash on my face, which I had attributed to an allergic reaction, as well as my labs from my nurse practitioner and was 90% certain it was Lupus nephritis. Not good but, it was comforting knowing I could look it up from my phone and begin researching it when I was able to focus. The boys were with me and my best friend was there when he was able. I was told at one point that I would be able to go home, but when he came back after more labs it was an immediate admittance, they just needed to fine room for me.

URINALYSIS WITH CULTURE IF INDICATED 03/25/2019, ordered by Judy Lock NP

URINE SPECIFIC GRAVITY 1.020 ; 1.000-1.030 Std Range

URINE pH 5.5 ; 5.0-7.0 Std Range

URINE UROBILINOGEN 0.2 ; 0.1-1.0 Std Range

URINE COLOR Dark Yellow

URINE APPREARANCE Hazy

URINE LEUKOCYTE ESTERASE Trace ; Neg Std Range

URINE PROTEIN >=300 ; Neg Std Range

URINE KETONES Neg ; Neg Std Range

URINE BILIRUBIN Neg ; Neg Std Range

URINE BLOOD Large ; Neg Std Range

URINE WHITE BLOOD CELLS 0-2 ; 0-5 Std Range

URINE RED BLOOD CELLS >100 ; 0-2 Std Range

URINE EPITHELIAL CELLS Occasional

URINE YEAST Moderate

MICRO CULTURE INDICATED - Culture Ordered

 

COMPLETE BLOOD CELL COUNT 03/25/2019, ordered by Judy Lock NP

WHITE BLOOD CELL COUNT 5.4 ; 3.8-10.8 Ref Range

RED BLOOD CELL COUNT 3.13 ; 3.80-5.10 Ref Range

HEMOGLOBIN 8.9 ; 11.7-15.5 Ref Range

HEMATOCRIT 27.0 ; 35-45 Ref Range

MCV 86 ; 80-100 Ref Range

MCH 28.4 ; 27-33 Ref Range

MCHC 33.0 ; 32-36 Ref Range

RDW 13.1 ; 11-15 Ref Range

 

COMPREHENSIVE METABOLIC PANEL (CMP) 03/25/2019, ordered by Judy Lock NP

UREA NITROGEN, BLOOD (BUN) 27 ;  <25 Ref Range

CREATININE 2.55 ;  <1.10 Ref Range

eGFR NON-AFR. AMERICAN 24 ; > OR = 60 Ref Range

eGFR AFRICAN AMERICAN 27 ; > OR = 60 Ref Range

SODIUM 140 ; 135-146 Ref Range

POTASSIUM 4.8 ; 3.5-5.3 Ref Range

CALCIUM 8.6 ; 8.5-10.1 Ref Range

PROTEIN, TOTAL 7.4 ; 6.1-8.1 Ref Range

ALBUMIN 4.2 ; 3.6-5.1 Ref Range

 

PROTEIN, TOTAL URINE 03/25/2019, ordered by Alexander Lam MD

RANDOM URINE TOTAL PROTEIN 151.5 ; 0-11.9 Std Range

 

CREATININE, URINE 03/25/2019, ordered by Alexander Lam MD

109.7

MEDICATION : IV Infusion (Not certain on the specifics)

March 25, 2019 / 9:10am : Clinical Visit / Jennifer Herman NP / Dorien Tests Positive for Lupus.

Check-in with nurse practitioner. I had tried to hold out but my health has gotten even worse. The depths of just how physically exhausted and mentally foggy I am has pushed my to the breaking point and I admit that I must go into the hospital per my nurse practitioners strong suggestion. She even offers to call an ambulance for me, but I have one son with me and need to go and get the other. I notify my close friend the situation and the Russian River Health Center contacts Sutter Santa Rosa Regional Hospital Emergency Room on my behalf. I'm also told at this point that my eldest son has tested positive for Lupus. I had not known that. 

ANA, IFA 03/25/19, ordered by Jennifer Herman NP

ANA SCRN, IFA Positive ; Negative Ref Range

 

ANCA SCREEN WITH REFLEX TO TITER 03/25/19, ordered by Jennifer Herman NP

ANCA SCREEN P-ANCA Positive ; Negative Ref Range

 

C-REACTIVE PROTEIN 03/25/19, ordered by Jennifer Herman NP

C-REACTIVE PROTEIN 11.9 ; < 8.0 Ref Range

 

CBC (INCLUDES DIFF / PLT) AUTOMATED 03/25/2019, ordered by Jennifer Herman NP

WHITE BLOOD CELL COUNT 5.4 ; 3.8-10.8 Ref Range

RED BLOOD CELL COUNT 3.29 ; 3.80-5.10 Ref Range

HEMOGLOBIN 9.5 ; 11.7-15.5 Ref Range

HEMATOCRIT 28.0 ; 35-45 Ref Range

MCV 85.1 ; 80-100 Ref Range

MCH 28.9 ; 27-33 Ref Range

MCHC 33.9 ; 32-36 Ref Range

RDW 13.6 ; 11-15 Ref Range

 

COMPREHENSIVE METABOLIC PANEL (CMP) 03/25/2019, ordered by Jennifer Herman NP

UREA NITROGEN, BLOOD (BUN) 25 ;  <25 Ref Range

GLUCOSE 92 ; 70-99 Ref Range

CREATININE 2.36 ;  <1.10 Ref Range

eGFR NON-AFR. AMERICAN 26 ; > OR = 60 Ref Range

eGFR AFRICAN AMERICAN 30 ; > OR = 60 Ref Range

SODIUM 138 ; 135-146 Ref Range

POTASSIUM 4.4 ; 3.5-5.3 Ref Range

CALCIUM 8.3 ; 8.5-10.1 Ref Range

PROTEIN, TOTAL 7.0 ; 6.1-8.1 Ref Range

ALBUMIN 3.9 ; 3.6-5.1 Ref Range

 

FIT-FECAL GLOBIN BY IMMUNOCHEMISTRY 03/25/2019, ordered by Jennifer Herman NP

FECAL GLOBIN Not Detected

 

HEMOGLOBIN A1C IMMUNOASSY 03/25/2019, ordered by Jennifer Herman NP

HEMOGLOBIN A1C 4.9 ; < 5.7 Ref Range

 

LIPASE 03/25/2019, ordered by Jennifer Herman NP

LIPASE 17 ; 7-60 Ref Range

 

PROTEIN ELECTROPHORESIS, SERUM 03/25/2019, ordered by Jennifer Herman NP

PROTEIN, TOTAL 7.1 ; 6.1-8.1 Ref Range

ALUBUMIN 3.7 ; 3.8-4.8 Ref Range

ALPHA 1 GLOBIN 0.4 ; 0.2-0.3 Ref Range

 

RHEUMATOID FACTOR (RF) 03/25/2019, ordered by Jennifer Herman NP

RHEUMATOID FACTOR <14 ; <14 Ref Range

 

RPR / REFLEX TPPA (DIAGNOSIS) 03/25/2019, ordered by Jennifer Herman NP

RPR (DX) W/REFL TITER AND CONFIRMATORY TESTING Non-Reactive ; Non-Reactive Ref Range

 

SEDIMENTATION RATE (ESR) 03/25/2019, ordered by Jennifer Herman NP

SED RATE BY MODIFIED WESTERGREN 56 ; 0-20 Ref Range

March 23, 2019 : Call from Jennifer Herman NP / Referral to Nephrology Associates

I receive a phone call from my nurse practitioner telling me that my kidney function has dropped from 30% to 25% total functionality in 8 days. The reason is unknown but she strongly suggests I go to the Emergency Room. My eldest son's birthday is on Tuesday and we have suffered familial loss or some other emotionally turbulent event. I am determined to let him have his birthday and stubbornly stay home.

March 22, 2019 : Clinical Visit / Jennifer Herman NP  

Check-in with nurse practitioner. I am told that my kidney function is insufficient. Something is wrong but we don't know what.

COMPREHENSIVE METABOLIC PANEL (CMP) 03/22/2019, ordered by Jennifer Herman NP

UREA NITROGEN, BLOOD (BUN) 25 ;  <25 Ref Range

GLUCOSE 80 ; 70-99 Red Range

CREATININE 2.39 ;  <1.10 Ref Range

eGFR NON-AFR. AMERICAN 25 ; > OR = 60 Ref Range

eGFR AFRICAN AMERICAN 29 ; > OR = 60 Ref Range

SODIUM 138 ; 135-146 Ref Range

POTASSIUM 4.6 ; 3.5-5.3 Ref Range

CALCIUM 7.9 ; 8.5-10.1 Ref Range

PROTEIN, TOTAL 6.5 ; 6.1-8.1 Ref Range

ALBUMIN 3.7 ; 3.6-5.1 Ref Range

March 16, 2019 : Contractors Finally Come Back to Clean... Somewhat.

Our landlords contractor is a great guy, just apparently everyone thought that everyone one else was going clean the multitude of nails, wood, wiring, personal garbage, roofing shingles and plethora of other rubbish left. It has been stressing us all out so much that it is THE topic with ALL of our therapists. The mess. The stress from the mess. The strain of each other from the mess. They didn't manage it all but at least they made a pretty good size dent. Small favors.s

March 15, 2019 : Lab  

HAPTOGLOBIN 03/15/2019, ordered by Jennifer Herman

HAPTOGLOBIN 277 ; 43-212 Ref Range

March 14, 2019 : Referral for GI Sutter Medical Center / Ultra Sound of Abdomen and Pelvic by Jennifer Herman NP

My eldest son was at this appointment with me for him possibly having strep throat. He insisted I explain to my nurse practitioner my  symptoms other then just lethargy, such as the pain. I was unable to finish a single apple in a two hour period of time and also have breath catching pain in my abdomen and stomach. The pain itself moved mainly around my belly button but was not stationary, pain was not in my kidneys. My eldest admits that at this point he thought there was something emotionally wrong with me due to the forgetfulness and listlessness.

March 14, 2019 : Clinical Visit / Jennifer Herman NP 

Anemia Labs. Requested not for SRJC due to inability to physically nor mentally attend hands on classes at Shone Farm.

BILIRUBIN, TOTAL 03/14/2019, ordered by Jennifer Herman NP

BILRUBIN, TOTAL 0.4 ; 0.2-1.2 Ref Range

 

CBC (INCLUDES DIFF / PLT) W / SMEAR RVW Manual 03/14/2019, ordered by Jennifer Herman NP

WHITE BLOOD CELL COUNT 7.6 ; 3.8-10.8 Ref Range

RED BLOOD CELL COUNT 3.53 ; 3.80-5.10 Ref Range

HEMOGLOBIN 10.1 ; 11.7-15.5 Ref Range

HEMATOCRIT 29.4 ; 35-45 Ref Range

MCV 83.3 ; 80-100 Ref Range

MCH 28.6 ; 27-33 Ref Range

MCHC 34.4 ; 32-36 Ref Range

RDW 13.3 ; 11-15 Ref Range

 

COMPREHENSIVE METABOLIC PANEL (CMP) 03/14/2019, ordered by Jennifer Herman NP

UREA NITROGEN, BLOOD (BUN) 28 ;  <25 Ref Range

CREATININE 2.11 ;  <1.10 Ref Range

eGFR NON-AFR. AMERICAN 30 ; > OR = 60 Ref Range

eGFR AFRICAN AMERICAN 34 ; > OR = 60 Ref Range

SODIUM 136 ; 135-146 Ref Range

POTASSIUM 4.2 ; 3.5-5.3 Ref Range

CALCIUM 8.9 ; 8.5-10.1 Ref Range

PROTEIN, TOTAL 7.8 ; 6.1-8.1 Ref Range

ALBUMIN 4.3 ; 3.6-5.1 Ref Range

 

H. PYLORI BREATH TEST-ADULT 03/14/2019, ordered by Jennifer Herman NP

HELICOBACTER PYLORI, UREA BREATH TEST Not Detected

 

HAPTOGLOBIN 03/14/2019, ordered by Jennifer Herman NP

HAPTOGLOBIN 299 ; 43-212 Ref Range

 

LACTATE DEHYDROGENASE (LDH) 03/14/2019, ordered by Jennifer Herman NP

LD 132 ; 100-200 Ref Range

 

URINALYSIS (URINE DIP) 03/14/2019, ordered by Jennifer Herman NP

URINE-COLOR Brown

CLARITY Cloudy

LEUKOCYTES Neg

NITRITE Neg

UROBILINOGEN 0.2

PROTEIN 3+

PH 6.0

BLOOD 3+

SPECIFIC GRAVITY 1.025

KEYTONES Neg

BILIRUBIN Neg

GLUCOSE Neg

 

URINE CULTURE (SENSITIVITY IF INDICATED) ROUTINE 03/14/2019, ordered by Jennifer Herman NP

Normal

March 11, 2019 : Boys' Maternal Grandmother 8 Year Death Anniversary

March 7, 2019 : Last class SRJC able to attend.

The mental lethargy had gotten so bad that from one page to the next I was unable to recall the main characters name. Class was an agony because it required me to be proactive. I struggled to hide just how badly I was physically struggling to walk on the farm.

March 7, 2019 : Clinical Visit / Jennifer Herman NP  

Lab Draw and check-in.

CBC (INCLUDES DIFF/PLT) AUTOMATED 03/07/2019, ordered by Jennifer Herman NP

WHITE BLOOD CELL COUNT 6.3 ; 3.8-10.8 Ref Range

RED BLOOD CELL COUNT 3.32 ; 3.80-5.10 Ref Range

HEMOGLOBIN 9.6 ; 11.7-15.5 Ref Range

HEMATOCRIT 27.8 ; 35-45 Ref Range

MCV 83.7 ; 80-100 Ref Range

MCH 28.9 ; 27-33 Ref Range

MCHC 34.5 ; 32-36 Ref Range

RDW 13.2 ; 11-15 Ref Range

 

FOLATE, SERUM 03/07/2019, ordered by Jennifer Herman NP

FOLATE 17.2 ; 5.5 Ref Range

 

IRON, TIBC AND FERRITIN 03/07/2019, ordered by Jennifer Herman NP

IRON, TOTAL 52 ; 40-190 Ref Range

IRON BINDING CAPACITY 233 ; 250-450 Ref Range

% SATURATION 22 ; 11-50 Ref Range

FERRITIN 80 ; 10-154 Ref Range

March 7, 2019 : Boys' Paternal Grandmother 8 Year Death Anniversary

February 7, 2019 : Last class SRJC able to attend for a month.

The mental fog was fairly bad, from one moment to the next my short term memory was out the window. I had no appetite and a majority of my time was spent sleeping or lying there in a daze with a book, continually losing my place and unable to focus. Driving was a bit better, but even that was exhausting.

January 29, 2019 : Referral Dermatology (Consult allergist for skin tests) by Jennifer Herman NP

January 23, 2019 : Car is picked up mostly fix, able to run.

January 17, 2019 : First SRJC class missed due to physical exhaustion.

January 16, 2019 : First day of SRJC classes / Car is towed too mechanics / Car Rental from separate entity.

January 14, 2019 : First day of SRJC classes / Arrange ride.

January 7, 2019 : Dorien's UCSF Plastic Surgeon Esther Kim MD / Car Rental.

January 3, 2019 : Car breaks down.

The car breaking is entirely on me. I was expecting a light or something to come on if it needed something, but apparently not. It ran out of oil. We are also still waiting for the contractors to clean up their mess. It is still stressing all of us out, mainly Dorien who is in turn stressing me out. My appetite has diminished all the more. Jokes are made about said lack of appetite to friends.

December 22, 2018 : We Finally Have Our Power Back On!

December 4, 2018 : Dorien's Labs / Our House Plus the Duplex Below are All on Generators 

We can only have our fridge and a heater on. Apparently not only was the power line coming into for 3 houses only at 110 but all of our power lines leading up to our house contacting from the duplex below our cottage all needed to be updated. Our house is torn apart because the only access to our houses power is inside and up above our bathroom closet. Holes added into the ceiling, nails, everywhere. Both boys are stressed to the max and keeping Dorien warm with his toes is stressing us all to the max.

December 3, 2018 : Dorien's Vascular Appointment 

A specialist for his purple toes. Everything seems good, they're just still very, very purple.

December 3, 2018 : Dorien's Vascular Appointment 

A specialist for his purple toes. Everything seems good, they're just still very, very purple.

November 29, 2018 : Referral to Liz Caine PHD by Jennifer Herman NP

November 29, 2018 : Dorien's Clinical Visit / Jennifer Herman NP

Checking on the toes situation. Again, circulation doesn't seem impaired and he is given referrals.

November 28, 2018 : Comcast Visit / Our House Requires Emergency Power Off

There is a feedback loop that almost electrocutes the Comcast gent. Power is turned off but not before it blows a light fixture and melts our Keurig. 

November 27, 2018 : Clinical Visit / Jennifer Herman NP  

Follow-up Anemia Check ; Referral to Center of Wellbeing Nutritionist.

VITAMIN B-12 AND FOLATE 11/27/2018, ordered by Jerrold Elliott MD

VITAMIN B12 339 ; 200-100 Ref Range

FOLATE 4.3 ; 5.5 Ref Range

IRON / FERRITIN 11/27/2018, ordered by Jerrold Elliott MD

IRON, TOTAL 52 ; 40-190 Ref Range

IRON BINDING CAPACITY 290 ; 250-450 Ref Range

% SATURATION 18 ; 11-50 Ref Range

FERRITIN 18 ; 10-154 Ref Range

 

CBC (INCLUDES DIFF/PLT) AUTOMATED 11/27/2018, ordered by Jerrold Elliott MD

WHITE BLOOD CELL COUNT 6.1 ; 3.8-10.8 Ref Range

RED BLOOD CELL COUNT 4.36 ; 3.80-5.10 Ref Range

HEMOGLOBIN 12.2 ; 11.7-15.5 Ref Range

HEMATOCRIT 35.0 ; 35-45 Ref Range

MCV 80.3 ; 80-100 Ref Range

MCH 28 ; 27-33 Ref Range

MCHC 34.9 ; 32-36 Ref Range

RDW 13.1 ; 11-15 Ref Range

Novemeber 26, 2018 : Dorien's Clinic / Transgendered Specialist Toni Marie Ramirez MD

Once again checking on his toes which are still purple, but no other side effects or strange occurrences have happened.

November 1, 2018 : Dorien's Clinic / Transgendered Specialist Toni Marie Ramirez MD

Dorien's toes have blistered and then turned  purple. 

October 27, 2018 : Boys' Father 3 Year Death Anniversary

October 25, 2018 : Dorien's Bulb Removal with UCSF Plastic Surgeon Esther Kim MD

Everything looks great! We're so happy with the results! 

October 23, 2018 : Family Member 2 Year Death Anniversary

October 10, 2018 : Dorien's Top Surgery with UCSF Plastic Surgeon Esther Kim MD

MONUMENTAL! we're all excited and utterly exhausted, but it was worth every moment of it! Dorien did beautifully and everything went so well!

September 6, 2018 : Dorien's Consultation with UCSF Plastic Surgeon Esther Kim MD

My eldest son is an amazing person. I am so proud that he knows himself well enough and is honest. This was a monumental event in our lives. One for celebration. One where everything is a bit foggy and my mind and body feel slow even with the excitement of it all.

July 23, 2018 : Clinical Visit / Women’s Wellness Check Gwen Riddell MD

Blood tests came back a bit quirky. My chronic anemia, I was told, was between and 8-9 and 11 is hospitalization worthy. Fun times.

CBC (INCLUDES DIFF/PLT) AUTOMATED 7/23/2018, ordered by Gwen Riddell MD

WHITE BLOOD CELL COUNT 6.6 ; 3.8-10.8 Ref Range

RED BLOOD CELL COUNT 4.15 ; 3.80-5.10 Ref Range

HEMOGLOBIN 8.3 ; 11.7-15.5 Ref Range

HEMATOCRIT 28.2 ; 35-45 Ref Range

MCV 68 ; 80-100 Ref Range

MCH 20 ; 27-33 Ref Range

MCHC 29.4 ; 32-36 Ref Range

RDW 16.8 ; 11-15 Ref Range

 

COMPREHENSIVE METABOLIC PANEL (CMP) 07/23/2018, ordered by Gwen Riddell MD

UREA NITROGEN, BLOOD (BUN) 10 ;  <25 Ref Range

GLUCOSE 85 ; 65-99 Ref Range

CREATININE 0.62 ;  <1.10 Ref Range

eGFR NON-AFR. AMERICAN 118 ; > OR = 60 Ref Range

eGFR AFRICAN AMERICAN 136 ; > OR = 60 Ref Range

SODIUM 137 ; 135-146 Ref Range

POTASSIUM 4.2 ; 3.5-5.3 Ref Range

CALCIUM 9.0 ; 8.5-10.1 Ref Range

PROTEIN, TOTAL 7.3 ; 6.1-8.1 Ref Range

ALBUMIN 4.2 ; 3.6-5.1 Ref Range

 

LIPID PROFILE 7/23/2018, ordered by Gwen Riddell MD

TRIGLYCERIDES 156 ; <150 Stand Range

LDL-CHOLESTEROL 109 ; 99 Stand Range

NON HDL CHOLESTEROL 136 ; <130 Stand Range

June 21, 2018 : Clinical Visit / Jennifer Herman NP

Arm was checked out again and at this time it’s noted that I haven’t had an overall check up within the last 17 years due to lack of health insurance. Arrangements made and medical coverage very much appreciated.

June 18, 2018 : Clinical Visit / Jennifer Herman NP

Punch biopsy for the remaining blisters which came back as inconclusive. They had basically cleared up due to the topical. Not being able to use your hands because of dime size blisters is no fun.

June 13, 2018 : Clinical Visit / Jennifer Herman NP

I finally went into to see my nurse practitioner due to what seemed like contact blisters that just kept spreading. This was the second time it had happened. Not certain if there is any correlation with RPNG but, off chance there is I’m going to note it.

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