Jacqueline birn story

Diagnosed with MGUS May 2003 followed by AL Amyloidosis diagnosis October 2006SCT at BUMC 1/5/2007Achieved partial response Jacqueline Mendels Birn
My Amyloidosis
My illness started with the discovery in May 2003 of something wrong
in my blood during my yearly check-up. My internist Dr. Robert Enelow, first
requested a 24 hour urine specimen and then he sent me to the oncologist Dr.
Seifert at Fairfax Hospital, VA. The results showed that I had Monoclonal
Gammopathy of unknown significance (MGUS) and the oncologist said that
there was a 5% chance that I would have one day multiple myeloma. I was
terribly frightened, however I tried to be optimistic and my boss and
colleagues and friends told me that 5% was a very low figure. I continued
going for checkups every 6 months but nothing developed and after 2 years, I
stopped going to the oncologist.
In September of 2006, back from my summer in Cape Cod where we
have a vacation home in Chatham, I had swollen legs and ankles which I
attributed to the stress of going back to work, a rather demanding and
stressful job at the Foreign Service Institute of the State Department where I
was training examiners in 89 different languages to assess the level of
proficiency of Foreign Service Officers prior to their assignment overseas.
My friend Sandra (they also have a house in Chatham) told me that during
the summer I already had swollen legs.
I tried to have a normal schedule, I went to the National Gallery with our
friends the weekend of September 15. I had to sit once in a while to relieve the
pain and swelling in my legs. I went on September 18 to see my internist Dr.
Robert Enelow. He did blood and urine tests. He requested a 24 hour urine
analysis which I brought to Quest diagnostics on September 20.
On September 28, Dr. Enelow sent me to WRA in Bethesda, MD. They
did a sonogram and an ultra-sound of my kidneys.
On October 3, Dr. Enelow sent me to the nephrologist Dr. Burka in
Bethesda who immediately requested an echocardiogram, and blood and
urine tests.
He told me that my heart was in good shape.
On October 5, I went back to Dr. Burka to bring him my files from Dr.
Seifert with the MGUS results from 2003 in Fairfax hospital. On October 12,
Dr. Burka ordered a renal biopsy at Sibley hospital in DC. Dr. Burka was
suspecting either light chain disease or amyloidosis. He did not tell me
anything. I spent the whole day at Sibley because they made a mistake about
the appointment; instead of 6 am, I was due at 1 pm. I was on an empty
stomach all day and very upset and tired. Dr. Burka came to the hospital in
the morning and he complained about the mix-up.
On October 19, Dr. Burka confirmed the diagnostic. My husband joined
me in the examination room upon request from Dr. Burka who said to both of
us that I had a very serious illness: amyloidosis. My husband immediately
asked if I would be cured. Dr. Burka was affirmative. He asked me to choose
for treatment, either Mayo Clinic or Boston U Medical Center/amyloidosis
treatment and research Unit. He called Boston Medical Center to ask for an
appointment for evaluation. He recommended chemotherapy and stem cell
autologous bone marrow transplant. Dr. Burka sent my file to Boston Medical
Center.
On October 27, at 7 pm Dr. John Berk from Boston U. medical center
called me to say that my file was incomplete. I called Dr. Burka after office
hours. The slides of my renal biopsy were between Sibley hospital and
Georgetown U. hospital. Finally the slides were sent by Fedex to Boston the
following Thursday, November 1st. I was loosing appetite and sleep, all the
while continuing to work. A cousin of my husband, Dr. James Vogel, thought
that I could be treated with medication and no bone marrow transplant. Not
knowing that it would be an autologous bone marrow transplant, my son, my
daughter, my niece, offered to give me bone marrow, if compatible.
On November 1st, I went to Dr. Enelow for my flu shot. He gave me a
diuretic, Furosemide 20mg, one a day for 30 days. He called Boston to try and
get me an early appointment. They put me on the priority list. I cried in the
doctor’s office. I was terribly upset and worried. I was scheduled for an
evaluation in Boston on December 18. We went to our house in Chatham, MA
for a short holiday, and to Boston to spend 3 days with our granddaughter
Esperanza (Tsatsa) while her mother Anne-Emanuelle had a conference in
Boston. However, I could not get an appointment at Boston Medical Center at
that time because all the doctors were away at an international conference on
familial amyloidosis. Back in Bethesda, on November 10, Dr Enelow gave me
a potassium supplement and doubled the dose of diuretic. Nov.16, Rabbi
Reiner from our synagogue, Temple Sinai, calls me and tells me about a
member of the temple who was treated at Boston U for the same disease as I.
He died. This was shattering news for me. The Rabbi wants to know if I want
to talk to the family. I answer absolutely NO. I will never forgive the Rabbi. A
few years later, I tell him about his faux pas.
On November 20, I saw Dr. Burka who was very positive and
comforting. My appointment for evaluation was moved to December 11.
While I was driving, Ms. Trafton called me from Boston U and told me that
my appointment had been moved up to November 27. My last day at the office
was November 22, 2006. On Thanksgiving 2006, November 23, we are packing
for the long term. We leave for our house in Chatham November 24, arrive at
7:15 pm. The house is in perfect shape. Dinner, walk to Sears point, I feel
extremely well, beautiful weather, good dinner at home, I practice the cello
and do a French correction for Anne-Emanuelle, our daughter, professor of
history of public health at the U of Toronto. Sunday November 26, we go to
Boston and stay at the Newbury Guest House on Newbury Street with parking
and elevator. Not bad at all, a very nice B&B. Excellent dinner at Smith &
Wolensky.
Monday morning, 6:45 am, Boston Medical Center in Moakley building.
I register and receive a card like a credit card with a number from the
hospital. Many tests at the hospital. Verification that I have amyloidosis and
they accept me at BU in the amyloidosis treatment and research unit, on the
3rd floor, same floor as treatment for cancer in the Moakley building at BU.
Wednesday November 29, back in Chatham, I read all the papers from the
hospital and we have dinner with our friends the Schwartz, Jerome and
Sandra who are staying at their vacation home, also in Chatham.
Thursday November 30, long walk.
Kate Fisher, chief nurse from the amyloid section at the hospital calls
me at 1:30 pm to explain to me all details of the treatment on my hospital
calendar. She gives me good advice. The big question is: do I receive 140 mg of
the chemo Melphalan in one treatment or 100 mg of chemo in 2 treatments,
the second one being 6 months later. Anne-Emanuelle studies the question
because of my age and my state of health. I am at the age limit for the 140 mg
in one treatment. I am also in excellent health, as Dr. Enelow keeps on
repeating to me.
Friday December 1. We wait all day for the conference phone call from
Boston. At 3:30 pm Dr Barry, Anne-Emanuelle in Toronto, and Richard and I
in Chatham are on the phone to discuss the dosage.
Saturday December 2, we negotiate the rental of a small apt. in
Greenhouse building: for January, $ 4600/month, $240 for car parking,
$153/day in December, very convenient, very close to the hospital but horribly
expensive.
Beautiful weather in Chatham, I take long walks.
Iris, my sister-in-law, advises me to take vitamins and supplements, which I
buy at the health food store. Daniel offers to give me bone marrow, other
people also. It won’t be necessary because the treatment consists in autologous
stem cell bone marrow transplant, in other words my own bone marrow.
Sunday December 3, Anne-Emanuelle announces that NK and Tsatsa
will come to Chatham in December, if the doctors permit me to have them in
the house near me. She also tells me that she will be my caregiver. What a
wonderful daughter I have. She is taking a one month leave of absence from
the university. She moves in with Richard and me in the apt. that we rented.
My dates will be:
Wednesday December13: beginning of the treatment
December 14: placing of the catheter in the jugular vein under anesthesia
December 15-16-17: I receive hormones by catheter.
December 18-19 : stem cell collection. I collect enough millions of cells in the 2
days. I don’t need a 3rd day of stem cell collection.
December 21: we return to Chatham. The doctors predict that I will feel good.
Monday December 4, bad news from the Mutual of Omaha insurance, my
medigap underwriter for the Foreign Service Medical Plan that covers me
offers no supplementary compensation for patients under Medicare: apt.
rental, trips, car rental $ 1200/month, all add to our expenses, they probably
never heard of bone marrow transplant for amyloidosis, a very rare disease.
December 24: Nikolai Krementsov, my son-in-law, and Tsatsa arrive in
Chatham. Anne Emanuelle (AE) will come and stay with me day and night
December 12 til January 16, Iris, my sister-in-law, will come January 14 til
January 28 to take over, we are paying for her trip and for the care of her
dogs in California. Between Jan. 14 and 16, AE will explain every detail of my
treatment to Iris. Then AE will come back if necessary or Sarah or Sandra
will come because they both offered to become my caregiver. Manuela, my
sister, will come January 25. Richard rents a car in Hyannis when he goes
back to Chatham. He won’t stay with me because the doctors don’t trust his
cough, not contagious but still, worrisome. Richard does not feel well, sciatica
and depression because he worries about me. Dr. Enelow sends me an article
from the journal of Internal Medicine, an 8 year study with rate of survival. It
frightens me but there is hope. Jeanne Rosenthal, my viola player and
epidemiologist and Jim Vogel, Richard’s cousin, an internal medicine doctor,
will help me to decide the dosage of chemo, 140 mg or 100mg in 2 stages 6
months apart. Because of my age, the high dosage is not recommended, but it
is still possible because I am in good health. The question is:
140mg/lb
100mg/lb + 100mg/lb in 6 months with a second bone marrow transplant.
We wait all day on Friday December 1st for the call/conference between me,
Dr. Barry and AE. Always the same question about dosage.
We rent the apt. in Greenhouse for 12-21 Dec and for 1st-31st January.
I look for medical masks and I order a wig. I go to the dentist in Chatham for
a general cleaning of my teeth prior to the procedure. The dentist knows of
amyloidosis, he recommends the high dosage for me.
AE does research the world over in Science journals for dosage of
melphalan. There is a world conference in hematology at Sloan-Kettering in
NY, which might help us to decide on the dosage. AE reminds me of
Hippocrates’ saying “First do no harm”. I get ready, receive many phone calls
from friends. I am confident and optimistic except once in a while when I
collapse and cry. Richard is totally silent and depressed. He sleeps a lot, and I
feel very much alone. We both wake up and cry. I buy 2 sweat shirts that open
in the front, for easy access to the catheter, also sweat pants, very nice in
yellow.
Monday, Dec. 11, Kate Fisher tells me that the high dosage of 140mg is
quite acceptable for me. They would never have suggested it if it were too
dangerous for me. What a relief. More crying, this time of joy.
Tuesday, Dec. 12, we leave for Boston, I drive, Richard has a bad
sciatica. Stop over at the hospital garage to buy a book of tickets. We go to the
apt. , 150 Huntington Ave, the Greenhouse. Small apt. but quite correct and
clean, garage underground. AE arrives 5:30 we go to dinner at Bonfire and
drink a good bottle of Los Vascos from Chili, my last wine until??? It is
Richard’s birthday, 76 years old.
Wednesday 12, wake up at 4 am, Richard goes back by bus to Hyannis,
rents a Toyota Camry. We keep the Honda in Boston so that I won’t have to
take taxis full of germs. AE and I go to the hospital, all kinds of tests. I am told
of the dangers of placing the catheter in the jugular vein, that is why it is done
under sterile environment. I am fed oxygen through the nose and a small dose
of valium and satinel, no anesthetic, I don’t sleep. Nurses wonderful and so
professional. It is all done in the East Newton building. Dr. Lebedis explains
everything to me, asks me many questions. Afterwards I am left alone in the
hallway and I start to panic. Finally I am wheeled back to my room on the 3rd
floor of Moakley. Dr Seldin and Kate Fisher come and see me. I am amazed
that they are so concerned with me. I start to understand that I will undergo a
big deal. AE and I return to the apt, have lunch and take a walk. I feel good
and optimistic but scared of hearing that I will be extremely tired afterwards.
How about my job, my music, our trips? First I must get cured.
I sleep poorly. AE gives me 2 tylenols. I sleep poorly every night but I eat well.
After the double injection of hormones in both arms to stimulate the stem
cells, the collection starts on Dec. 19, first day, 3 millions collected between
8:30 and 2 pm. I get more injections of hormones and continue the double
dose of diuretic. Next day, I collect 4 millions of stem cells. It is enough for the
procedure. Dr. Emelia Benjamin, cardiologist sister of AE’s friend comes for
a friendly visit. We return to Chatham after a stopover at the pharmacy and
spend $330.
I arrived 49 years ago today in NY! It was December 20, 1957. I eat
well, take walks, but I sleep poorly. I keep on gaining weight. I continue the
diuretic twice a day. NK and Tsatsa arrive on the 24th. We take walks on the
beach, Tsatsa and I have a wonderful time. We have champagne and caviar
from Russia. New Year’s Eve, fireworks that we see from our deck. I drink a
drop of champagne with everyone.
January 1st, 2007, departure, AE and I, for the procedure in Boston.
January 2nd, I am given Protonix. We go from the garage to the Moakley
building by foot. We wait 30 min in the waiting room. I get saline solution
through the catheter. I drink a lot, water, juice, ginger ale. I get breakfast at
11:30 and medicines against nausea. The melphalan injection starts. It is the
first day of 2. I take ice cubes in my mouth with cranberry flavor. It is very
painful and makes me cry. I get cramps in my legs. The melphalan injection
lasts 40 minutes. I drink water and juice. It is horrible. I am given more saline
solution through the catheter. Dr. Sancharawala comes and talks to me. There
are 50% chances that the amyloid will be eliminated in the blood. She says
that they will see next June when I come for my checkup. I have to breathe in
a machine 10 times every hour to activate the lungs. We leave the hospital at
3:30 pm, go home, I am a little drowsy. We go for a walk.
Wednesday January 3, Hospital at 9 am. Cleaning of the catheter, 2
hours of saline solution before the melphalan intravenously. Very hard, I cry,
take ice in my mouth. It ends at 3 pm. We go home. Another patient, Mr.
Barro, is much sicker than I am. He has many side effects. Hopefully, it won’t
be like that for me. Dr. Berenbaum comes to see me in my hospital room. He
is a psychiatrist. He asks me how I feel mentally. I tell him that I am strong.
He wants to know what was my worst pain and misery in my life. I tell him
about my brother’s death and my survival in WWII. I cry. We talk about the
war, he tells me that his cousin, Michael Berenbaum, survived Auschwitz and
works at the Holocaust museum. He wants me to preserve my energy in order
to get stronger. If I cry all the time, I must call him. He tells me “you are a
survivor”. 10 pm, I am tired, AE and I go home and go to sleep.
Thursday 4 January, I sleep until 6 am, take my medicines, go back to
sleep until 10 am. Hospital. Get acquainted with Dr. Skinner, the head of
amyloidosis treatment. She explains to me that MGUS was the predecessor of
amyloidosis. I am lucky that the progression was very slow. My rate of
creatinine is low. My kidneys function. The doctors do not know exactly if the
amyloid will be eliminated and if I will be in remission. We meet Nikolai and
Tsa who are staying at hotel Colonnade, next to our apt. in Greenhouse. We
go by foot to their favorite restaurant “Atlantic fish”. They have a good
dinner. I have my tea and yogurt. I am on a neutropenic diet.
Friday 5 January. I slept well. Today is a big day: transplantation of my
bone marrow. Everything goes as planned. I am given all the stem cells that
had been collected 3 weeks ago. My heart and all my vital organs are in good
shape. Nikolai and Tsa come to get me and take me home in a wheel chair.
I am tired.
Saturday 6 January. It is called Day + 1. I wake up several times but go
back to sleep. I take a walk all the way to the hospital, and get treatment.
Another walk in the afternoon.
Sunday 7 January. Day + 2. I sleep well, walk to the hospital, mild
weather, walk back, sit in the sun on a bench. Somewhat tired, long rest in the
afternoon.
Monday 8 January. Day + 3. It is raining and we drive to the hospital. A
little more tired. Siesta, quiet evening.
Tuesday 9. Day + 4, same routine, hospital, medications, tired.
Wednesday 10. Day + 5. I sleep a lot, hospital at 10:30. Platelets are
going down. New doctor, Dr. Oren. Apparently, everything will be worse for
me for 3-4 days. Lunch at the hospital. I eat well.
Thursday 11. Day + 6. I am pale and I throw up. Hospital, incident with
tube that gets loose, I am full of blood, scared, but the nurse fixes it all. Colic
and throw up twice.
Friday 12. Day + 7. Everything starts well. Then, violent diarrhea, 3
times. I take 3 immodium. Quiet evening.
Saturday 13. Day + 8. Hospital. I get 2 bags of platelets, tylenol,
benadryl. 4 people in the same room. I don’t like it. But Janet, the nurse, is
wonderful. Another one of my angels. We go home around 1 pm. I am very
pale and tired but I feel well and my moral is positive. No fever, and no
hospitalization. Anne-Emanuelle is saving my life and Richard says that he
will be thankful to her for ever. I speak at length to Manuela and I tell her to
listen without assuming but I am already planning my return to Bethesda.
But, I must be patient. Around 10 pm, I have burns in my digestive tube, it
must be the small peas that I did not digest.
Sunday 14. Day +9 I sleep rather poorly, maybe because of the film we
saw on TV. Hospital at noon. Excellent news, I have 100% of oxygen in my
body, the platelets enter my system. No need for transfusion. My legs continue
to be swollen. Bad weather. I would like to be back home. Anne Emanuelle
has not slept for 1 week, has been watching me 24 hours a day. Impossible to
imagine the care she is giving me. She dares not go to sleep because I am still
in danger. And she watches me. Iris, my brother’s wife, arrives tomorrow. I
hope that AE can go home tomorrow night. Richard is very sad and
depressed, all alone in Chatham. He does nothing but worries. Friends from
Bethesda call him. I see my limits, this morning in the hospital garage, I have
difficulty climbing 4 steps. Small nose bleed.
Monday 15. Day + 10 Iris arrives. I have total insomnia. Hospital 9:30.
excellent news, I created 29,000 platelets. Doctors will stop anti-virus and
antibiotics. I take a mild sedative and finally I take a small siesta. Everything
gets better for Richard who will drive from Boston to New Haven. Daniel will
pick him up in New Haven and take over the driving when it is time to go
home. I will fly back.
Tuesday 16. Day + 11. AE goes home, arrives safely. Hospital at 9 am.
Excellent news. I have now 67,000 platelets. The doctors are extraordinarily
satisfied. My state is “outstanding”, no more antibiotics, no more anti-virus.
Dr. Oren says that I will be fragile for 1 year. I am happy, happy. My catheter
is removed. Not too painful. Small scar. Manuela organizes my trip home with
her who will do a circular trip, Atlanta to Boston and back with me to
Bethesda, hopefully on January 23. Richard and Donald, who came to see him
to give him support, will drive to Boston in Donald’s car. Richard will return
the rental car, will retrieve our car and will meet Daniel in New Haven. Daniel
will do the driving all the way back home to Bethesda. I will fly home with
Manuela. I have a good appetite, do some exercises and take a small siesta.
Wednesday 17. +12. I don’t go out at all, my legs are swollen and burn
me. Iris puts 4 pillows under my legs. Hospital 9 am. Increase by 50% of the
diuretic. I am very cold. I take a 1 hour siesta. Angry at Sandra who tells Ri
that I have only 30% chances of success. Iris makes a beef bourguignon,
delicious.
Thursday 18. Day +13 I don’t sleep well, despite the sedative, I sleep
from 9 pm till 2 am. Up at 6 am. Hospital 8:30. Wonderful news. Officially I
will leave next Tuesday. Still 10% possibility of a change in my date of
departure. I am given a double dose of diuretic. We take a walk in the
Prudential mall and return through the streets. It is sunny. I call Dr. Enelow
and make an appointment for Friday January 26 in his office. Quiet dinner
with croque-madame, apple sauce. I take a double dose of diuretic.
Friday 19. Day +14 9 am, hospital. I now took 103,000 platelets. Last
injection of hormone for red cells. Conference with Kate Fischer: she tells me
all that I am allowed to do and must not do. I have a chemo brain. I loose all
my hair. Farewell and thanks. Carol, the insurance specialist, tells me that all
my appointments with Dr. Enelow will be reimbursed by Medicare. I will stay
fragile for 100 days, then less fragile for 300 days. My afternoons will have to
be quiet.
Saturday 20-Sunday 21, days 15 and 16 I sleep very poorly. Iris buys 2
homeopathic sleeping pills. Difficulty with digestion despite wonderful
cooking of Iris. Another very bad night.
Monday 22 day + 17. Hospital at 8 am. I did not sleep at all.
Dr. Oren says that my state is “outstanding”, “fantastic”, but I don’t sleep. He
gives me Ambien and Ativan for sleeping.
Tuesday 23. Day + 18. Departure from the hospital. Taxi, Airport with
Iris. Manuela is there, waiting for us. I am in a wheel chair with a mask on my
face. Manuela warns the stewards on the plane that I am not contagious, just
fragile. We arrive at Reagan National airport. Richard is there, waiting for us.
I don’t sleep. Very tired, no appetite. Terrible pain in my legs.
Thursday 25. Dr. Enelow, complete exam, I have very little feeling in my
toes. Nerves are damaged. Dr. E. says that all the steroids that I took prevent
me from sleeping. He prescribes Valium to sleep and Gabapentin for the
nerves and the pain. I sleep in the armchair.
Saturday, Sunday Monday, I feel much better, take half dose of Valium
and 2 gabapentin. I sleep at first in bed, then in the leather armchair, sitting
up. Difficult digestion, diarrhea. I take one Gabapentin at 5 pm and one at 9
pm. + ¼ valium. Manuela goes home, because I am strong enough, or so I
believe.
Sunday 4th February. Terrible pain in the left muscle of my buttocks. I
take 2 tylenol, twice. Dr. Enelow wants to see me, but I am not strong enough.
Tuesday 6 Feb. I go to Dr.E. He says that I don’t have enough strength.
He tells me to stop Lasix. I take Magnesium and calcium recommended by
Iris. I try and exercise my arms. I start to play a little cello for the first time.
Friday 9 Feb. Call from Boston. The doctors want me to take Lasix again, 40
mg. I take 1 Gabapentin and ¼ valium.
Sunday 11 Feb. email from Dr. E. he wants me to take 80 mg of Lasix
and 2 Gabapentin.
Monday 12 Feb. 80 mg Lasix and potassium.
Tuesday-Friday, snow and ice. I don’t go out.
Friday through Tuesday, Tsatsa comes for a visit, with her mama,
wonderful for me. We have so much fun. I start to use my stationary bicycle.
Wednesday 21 Feb. Visit with Dr. Enelow. He watches me very closely.
I am able to take a walk alone in the park in front of our condo.
Thursday 22 Feb. We go to the movies, matinee. I wear a mask. I take ½
Diovan, 1 Lasix and 1 potassium. I sleep well every night and I take a siesta
every afternoon. Vitamin D every day for 1 week. A friend comes for a short
visit. A neighbor comes the next day. I feel better and better. I start to have
friends over and I prepare lunch.
March 7, I fall down on my left shoulder, terrible pain.
March 8, Dr. Enelow shows me 3 exercises for my shoulder. He is very
satisfied with my state of health.
I take longer walks. I don’t eat much
meat, don’t feel like it.
March 23, I go to my office. Not much of a welcome. I am disappointed.
March 27. I receive an email from my supervisor telling me that my job
has been eliminated. It is a terrible shock for me. I was looking forward to go
back to work in April. I am very depressed. I try to go out with friends,
museums, dinners.
May 3rd. Jessica advises me to go to a social worker. I go to see Susan
Abrams , psychotherapist, who tells me the difference between “Being and
Doing”.
June 6th. We drive to Toronto and stay for 6 days, I take Tsa to school, I
pick her up. Always wonderful. We visit the new Ontario museum, have
dinner in restaurant.
June 12th, we leave for Delmar, long trip. June 13 we leave for Chatham.
June 18th, checkup at Boston U, we sleep over at Newbury guest house,
next day appointment with Dr. Barry. I go through all the tests. We return to
Chatham.
June 22nd, phone call from Dr. Barry. Very satisfied. Email from Dr.
Skinner, very positive. I play at Sandra’s. I faint. Ambulance. Hospital; they
keep me overnight. I continue to take lorazepam upon advice from Jessica. I
don’t sleep, very depressed. Manuela is with us, helps me, we walk together. I
start to sleep again.
July 18 Dr Roth, I stop diovan, lasix and potassium. Very frequent
episodes of weakness. Panic attacks. Sometimes very cold ocean water helps
me. Extremely tired and depressed. I take ativan and valerian. I feel heavy,
dizzy, drowsy. I take melatonin every day.
August 14, Dr. Roth for sore throat and cough. I feel weak and faint on
chair on my way out. Diarrhea. I take robitussin and ½ ativan and 1 ½
melatonin
August 15, go to otorhyno Dr. for Richard. Dr. speaks of cancer. I faint
in Dr.’s office. Manuela comes back. I don’t sleep, even with ativan and
melatonin.
Jessica + Todd + Kady arrive. Jessica tries to help me, talks to me a lot.
Return to Bethesda August 31.
Sept. 5, Dr. Enelow, 25 mg Zoloft and gabapentin to sleep. It gives me vertigo.
Sept. 6, trazodone, 2 tablets to sleep.
Sept 17, 2 zoloft in the morning, 2 trazodone in the evening.
Sept. 21 Dr. Enelow, I must take vitamin D. I lost 20 lbs. I start to eat again.
No more panic attacks. I walk every day around our neighborhood. I will not
go to Jessica and Todd’s wedding. Too big a trip for me. But I will go to
Toronto for Tsa’s birthday, Sept. 26-30. I take a wheelchair at the airport.
October 7, phone call from Sam Leavitt: I must see a psychiatrist.
Manuela told him how I am, no sleep, depression.
October 9, wedding of Jessica and Todd.
October 10, 7 am appointment at Dr. Larry Horn, psychiatrist,
recommended by Susan Abrams. Richard comes with me. I talk and explain
how I feel. He prescribes Nortriptyline, and sleeping pill Rozerem that I take
while continuing to take Zoloft for 6 days. 2 days later, I feel better. I sleep.
October: Vaccination against flu.
October 23. Dr. Horn. I feel very good. I continue nortriptyline and
Rozerem. I start to drive myself. I sleep every night.
November 1st, Manuela comes for a visit. We go to museum, exhibit of
Hopper’s paintings.
November 3rd, evening at Mopsik, in-laws of Steve and Dena Isaac. I feel
very, very well. Manuela leaves November 6.
November 26, cataract operation. I have many activities, music,
meetings, classes.
Nov. 30-Dec.2, AE and Tsa come for a visit. Excellent weekend, Air and
Space Museum with Tsa and then we go to see Roosevelt memorial.
December 13, departure for Boston. Stopover at Judy and Willie in New
December 14, Chatham.
December 17-18-19 Boston U Medical center. Complete checkup with
bone marrow biopsy, etc.
December 21, phone call with results: partial response to treatment.
December 22. Departure for Toronto, sleepover in Gloversville.
December 23 arrive in Toronto for 1 week. Always wonderful with the
Krementsov.
December 30 back in Bethesda.
December 31, lunch in Alexandria with our friends Nowak and
Borgeaud.
2008, one year after the bone marrow transplant…
All of January, I am very busy. Dr. Enelow: all vaccinations that are needed
after I lost them with bone marrow transplant.
Feb. 6, vaccination against polio. We plan a trip to Paris to join the
children who are on a sabbatical. We stay in their apt. for 5 weeks. First 2
weeks excellent. Suddenly I feel weak and I faint 3 times. AE calls Dr. Enelow
long distance. Stop Diovan. Ambulance. Hospital Lariboisière. They keep me
6 days, they never heard of amyloidosis. They run all sorts of tests. Finally I
go home. Manuela arrives, we celebrate our 50 year wedding anniversary. Ma
and I walk, I give her my arm and we go out a lot. Return to Washington
April 24. I have high blood pressure, I take Diovan 80 mg twice a day. I am
better and I stop the antidepressive Nortriptyline end of May. I start Lexapro
1 a day, valium, 5 mg, then 2.5mg, then 1.25mg. Continue Lexapro, Ativan.
I faint twice, 5/21 and 6/3.
2010
Several fainting episodes.
We take a cruise with Holland-America Line. Very disappointing for me.
Passengers not interesting. Dinner companions not interesting. Stop overs not
what I expected. I get very depressed, I loose my appetite. We get off the ship
in Istanbul. After 4 days, and an eruption of volcano in Iceland, we are stuck
but finally we can leave on first plane to Geneva to be with the children. I
faint in the Hilton lobby. Nothing serious. Back in Washington. I go to the
psychiatrist Dr. Horn. He prescribes Nortriptyline like 2 years ago with
Rozerem. No relief. I am in constant touch with him by phone while in
Chatham in the summer, still very depressed and panicked. He tries several
anti depressives. Nothing works. Finally he gives me bupropion, tells me it will
take up to 6 weeks for full effect. In fact after 4 weeks I start to feel good. I
continue to see Dr. Horn every 6 months and I continue taking Bupropion.
2011
June check up: still partial remission
2012
June check up at BU: some abnormality: 10% lambda plasma cells. Dr.
Seldin talks to me on the phone. BU wants to see me for a check up in
December. Still in partial remission
2013
June check up.

Source: http://www.amyloidosissupport.org/survivors/jacqueline_birn_story.pdf