I'm straight off of one fabulous family trip, but before I go into all the fun, fabulous details of our field trip to Boston I'll tell you all about the primary reason for the mini-vacation: seeing Dr. Weinstein, or Weinstock, or Goldstein.
I have so many Drs. for so many problems with so many organs that I've begun to mesh their names together. This has happened since my first clinical trial at Dana Farber in summer 2008. I had the scientific genius guru Dr. Stone mixed with my husband's alpha gastro surgeon at Dartmouth Dr. Murray. I thought I was being treated by Dr. Murray Stone.
It does tend to shock people when they call to confirm I am coming in for a complicated surgery (such as the wisdom tooth I was supposed to have removed this past summer by an oral surgeon) and when they say "I'm calling to confirm procedure X with Dr. Y" I ask, "WHO?"
I just have so many
surgeries and procedures. Thank goodness for my black berry. I'm finally making an organizational worksheet for my computer. I'll post this in PDF on the sidebar for others when it is completed.
Dr.Weinstein gave me relatively good news! He
says it will be a while before I'm back on oxygen.
Maybe, possibly, this means I could never be on oxygen again.
We read through my Pulmonary Function Tests. The last results are the best my lungs will ever be. I'm functioning at 80% of expected capacity based on the FVC (forced expiratory Vital capacity) or the volume of air I can forcibly blow out. Previously the number was 2.37 L, which I hope is my worst or 63% of expected. Now it's 3.04L.
Fev1, the maximum volume of air that can forcibly be blown out in the first second of the FVC, improved from 27% of predicted to 31%.
In percentages this doesn't
look like much, but in quality of life, the improvement has been leaps and bounds. I'm off my couch. I can manuever the whole science museum and Chuck-E-Cheese with X. I'm making plans to enjoy life again.
To maintain the 80% lung functioning capacity I could undergo photopharesis which requires removing my blood to train the wbc (white blood cells) to no longer attack my lungs.
This is an extensive process similar to chemotherapy and/or a transplant and it would not improve my lungs to greater than 80%.
For the record, I will take 80%.
The process of blood letting would be once a week then expand to once every 2 weeks over a peroid of 6 months with treatments all in Boston.
If I'm interested in anything that could possibly improve lung function above 80% I would have to talk about trials, such as Interleukin-2, with Dr. Alyea to attack my graft vs. host disease directly.
The plan we have settled on now is a 3-6 months prednisone taper. I'm decreasing my dosage by 10mg every month. Starting today I'll be taking 40mg of prednisone daily. I have the option to expedite the taper by lowering the dosage every two weeks, but I don't think I'll take that option.
I'm enjoying the quality of life that has been restored to me. The side effects of the sleeplessness (it's 5am now), the bloated face, and unwanted hair are pale in comparison to going into respiratory distress walking 5 feet to the car.
On this schedule, my PFTs should be monitored at 30mg which means they need to be repeated in two or 3 months.
I have a Follow up with him March 29 10am 15 francis st.
I enjoyed Dr. W very much. He had a laid back bedside manner. He answered all my questions thoroughly, using my PFTs as visuals so I could understand best. He reminded me to call immediately if I had any change in condition during my taper.
He made me feel reassured and comfortable. These are the favorite feelings I can get from any provider. It's light years away from where I felt in the hospital back in October.
I didn't write much about my
experience then. I, again, had chosen to do a social experiment on myself. I wanted to know and understand what hospitals are like for people with little or no support system during a severe surgery complicated by a life threatening illness.
My sister had just had her baby so my mother, who is usually at my side day and night, had gone to be with her family. My father was working a great job and really didn't want to be exposed emotionally to the surgery which brought back terrible memories of my lung failure in 2007.
For those of you who don't
know, I went in to respiratory failure in Feb. 2007 after my first transplant. The doctors told my family I would die and to make funeral arrangements.
My husband was experiencing the same difficulty coping. He also had our son who needed to be supported and reassured.
And I just wanted to see what it was like to be a "normal" patient with no education or safe gaurds. I was admitted under a surgical team without the hematology team that has overseen me for the past four years, and I went under the knife (well, the scope).
I never expected the experience to be as terrible as it was.
I was admitted to a surgical floor with little or no experience with patients possessing my comorbidities. The staff was wonderful at addressing my chest tube and wound, but could not cope with the manifestations of what we now know as bronchiolitis obliterans.
According to the surgery, I was doing well. I was
moving. I was peeing. The tube was functioning.
I just couldn't breathe. Despite telling people over and over nobody could make the connection that my lung problems could be occurring for some reason other than the surgery.
To make things worse, even after having three different specialties consult on my pain management: anesthesia, surgical pain management, and palliative care, and collaboratively write orders regarding what I take for baseline pain control of my diseases and what my increased needs would be from the surgery, the staff refused to administer it citing possible overdose.
I have never been in so much pain in my life. I never knew I could make the noises of agony I did. I couldn't cry. I couldn't sob. I couldn't breathe I hurt so badly.
I also couldn't breathe from the surgery and my BO.
During my stay, I was told by the staff I was a diabetic and needed insulin. I was put on accu checks every two hours to monitor my blood sugar despite the fact that I am not now and never have been a diabetic.
During this period I learned there was another cancer patient on the floor who had the same procedure as me the same day with the same surgeon who has a diabetic (Never underestimate the patients capacity to find out information. Survival instincts trump everything).
I believe we were confused. I refused all insulin and accuchecks.
As I was being discharged I asked a nurse practitioner about this. She did say it's customary to put surgical patients on insulin sliding scales to meticulously control blood sugars post-operatively since hyperglycemia impairs the ability to heal.
This I understand, but it was never told to me. I was told I was a diabetic.
Very scary. I finally asked (well, my mom when she came to visit demanded for me) to be moved from the surgical floor to the heme/onc floor where the nurses were familiar with me as a whole patient.
At this time, on Thursday) I also asked for an official consult with hematology. I felt everything other than my surgical problems were being ignored. I couldn't breath. My oxygen saturations were going to the mid-80s when I walked (normal is 100-98%). This qualified me for oxygen at home according to Medicare standards.
I was told by the surgical fellow that hematology couldn't be "forced" to see me.
Silly me, I thought that is what an "order" was and that I didn't need oxygen.
At that point, I was so frustrated, angry, hurt, and in pain I wanted to leave even if only to go directly to the emergency room to be readmitted as a hematology patient.
My saving grace was Doc telling me over and over again not to leave the hospital. Lucky me, I did have an internist by my side the whole time that would not let me do something stupid (like go home unable to breathe), because I had a surgical fellow telling me I was fine.
I felt completely undermined. I felt like what I was saying had no impact on what this quesi-surg had all ready decided. He just wanted me off his docket. Surgically, I was fine.
I never did see a hematologist that stay. I left Monday after quesi-surg's boss showed up and ordered me the at-home oxygen I had been requesting.
What I didn't expect was the psychological ramifications of this stay, of my little experiment.
The fear of having to repeat this experience kept me from seeking medical help for months. I felt like I had been completely abandoned, specifically by my cancer team. I don't understand why I was allowed to undergo a surgical procedure while extremely immunocompromised without a safety net of an internist.
So many things could have
gone wrong. I could have acquired an infection, gone septic and died. I did develop severe lung complications manifesting as bronchiolitis obliterans, which is life threatening, that was not addressed, because I could not even get a consult for a provider that understood the disease.
I couldn't even get a
consult while in the hospital after a surgery! What, exactly, am I paying for?
To be honest, I've taken this a little personally. I suffered so greatly. This could have been prevented.
When I became ill in December, to the point that I knew I would die without intervention, I kept thinking that the events of the fall could be repeated and that I never wanted to be as scared or suffer as much as I did during those days. I never wanted to feel so alone again. Death had
become a better option. Dying was better than going back to the hospital.
I know I suffer from post traumatic stress from everything I've been through. I'm glad I didn't let this incident kill me, but now I can only think of those for whom this experience was not an experiment, who really don't have the knowledge or the voice to advocate for themselves to receive the best quality of care.
I hope this inspires some of you to protect and advocate for the sick. I'm so lucky to have such great supporters. Everybody should be so lucky.