Message from Judy

[Guest guest]

Hi All,

It's been quite awhile since I have been on the web site. After the

Jan. 22 biopsies (10 of them) indicated negative for rejection the

doctor took me off of Valcyte a week or few weeks later. I don't

recall exactly when but I got a very bad sore throat and had it for

almost 10 weeks. I saw doctors 9 visits during that time, had blood

tests, sinus scans, throat swabs, thyroid scan, sinus exams,

antibiotics, special mouth washes, finally a fungus medication (which

didn't really help). The only thing that helped was I would eat

sugar free banana popsicles. In fact I would wake up during the

night with my throat hurting so bad I could not go back to sleep so I

would get up and get 2 popsicles and get back in bed and eat them

until finally I got to the point where I would fall asleep eating

them & the next morning would have do do laundry of my sheets,

pajamas and even the mattress pad one time.

At one checkup with my lung doc in Indy he finally asked me what I

thought we should do about my throat. I looked him straight in the

eye and said " gee I don't know I didn't go to medical school " . My

diplomatic son, Jeff, told me later he thought that was bad that I

said that as the doctor looked real frustrated. I replied and just

how frustrated do you think I am after 10 weeks of a sore throat and

all these doctors who cannot figure out what to do.

Finally the end of April it suddenly occurred to me that the sore

throat had begun shortly after I had been taken off of Valcyte (the

anti viral med that costs $2,000 a bottle if you are taking 2 pills

per day. The last bottle I had gotten was in Dec. when I was in the

Catstrophic area (outside the donut hole) and it had only cost me

$150. Previous ones had cost me $900. Anyway I was going to call

the doc, but had not done it; and that Fri., May 2 the lung

coordinator called me at 5 p.m. and said the doctor decided maybe it

was the virus so he wanted me back on Valcyte, but to take 4 per

day. I realized then on the weekend that the bottle I had would only

last for 2 weeks so called her on Mon. & had her call the hospital

pharmacy for a bottle since I was going over there on May 6. I had

also discovered that weekend that I was in the donut hole as pain

pills and pain patches that the doctor at the Cincinnati Pain Clinic

(who had done an Epidural-which did not help-for my back pain) had

cost me lots of money & I wondered if my insurance was not paying or

if I was in the donut hole. Anyway it turned out the bottle of 120

pills only cost me $2,500 instead of the $4,000 because I had been in

the donut hole and I went out of the donut hole after paying the

$2,500. So now I am in the Catastrophic category for meds Medicare

Part D the rest of the y ear, meaning most meds will only cost me $2

or $5 except for a few that I have to pay 5% (so the $6,000 bottle of

Valcyte I got a week ago cost me only $300 for a 90 day supply-then I

got an email this week to stop taking the Valycte and had just gotten

the bottle as the doctor had said he was going to have me on it for 3

months more.) Anyway within 3 days of being back on the Valcyte my

throat started to feel better and within a few weeks my whole body

started to feel stronger. I had felt terribly weak ever since the

lung collapse in Nov. and I thought it was the 6 mg of Prograf twice

a day plus all the rejection meds they had given me by IVs during my

10 day stay in the hospital over Thanksgiving.

I kept hoping the doctor would lower the Prograf but he wanted my

blood results to show 10.2 and it was only showing 8.7 until this pas

Tues. when he showed 23.3. Fortunately I checked my email before

taking my pills Tues. eve & the coordinator told me to not taking any

Prograf that night and to lower my dosage from 6 pills twice a day to

5 pills twice a day. And I have to have another blood test done this

Tues. The doctor also had lowered my Prednisone from 20 mg to 15 mg,

but I still have the chipmunk cheeks. And even though I had advised

my diabetic doctor when the doctor had lowered my Prednisone from 25

to 20 mg she would not lower my insulin; and I started having

problems with my blood sugar dropping quite low. Finally one night a

week or so ago it had dropped to 59 and I called her emergency number

which I am supposed to do if it goes below 70 & she lowered my

Levimer from 6 units to 4 units. I had an appointment with her this

past Fri. & she now has lowered it to 2 units. She also lowered my

Novolog at dinner time from 6 units to 4 units; but has not lowered

my lunch time units which has been 8 units since Nov. So I simply

get a Starbucks Frapachino or eat something in the afternoon to keep

my blood sugar from dropping too low as I believe that 8 units is

still too high.

I alsohave developed such sensitive skin I bruise terribly easy or

cut easily & when my skin gets cut I have to cancel my water

therapy. Last Tues. when we took the kids home to Lafayette after my

doctor appointment in Indy I went over to their fense to pat the

heads of 2 of their dogs (pit bulls) who were happy to see me & one

had his paws on the fence and apparently touched my arm as it started

to bleed. It has healed now; but today I was screwing a candle light

bulb in and it burse in my hand and cut my finger & broken glass flew

all over me so I had to call Jeff to come over and vacuum me and the

area before I could even move. Also a week ago on Fri. morning I

woke up with horrible leg cramps and could not move or get out of

bed. Thank heavens my grandkids were here; but I had to call them on

my house phone and yell for help on my answering machine for Miranda

to get a heat pack and put it in the microwave. If they had not been

here I would have had to call 911. Now I have bought a new heating

pad and keep it beside my bed in case that happens ever again. I

have been taking potassium so the doctor said my magnesium could have

dropped and caused that. but since they took me off the valcyte I

have not been having the cramping so hopefully that will not happen

again. Time to take my pills and I have rattled long eough.

Kerry did call me the other day & I told her I will scan my water

exercises and post them on our web site if it will take it. I would

recommend anyone who is going to have a transplant to be doing such

exercises in advance to help build up your strength in advance. Or

if you can do any other kind of fitness exercises now, by all mans do

them. I need to get back to using the NuStep machine at the Y as it

was one machine they had me use when I had my Pulmonary Rehab before

my transplant and after. Before the transplant I also was doing the

treadmill but very slow and weak & they have not had me do that since

the transplant yet.

I did hire shome to help organize my house in April and another lady

to do some light housework. They were both helpful, but it was

expensive and the organizing did not satisfy me as somethings I then

had prlblems finding and somet things were put in the attic that I

did not wanat in the attic. Also the lady who did the housework was

not the greatest. She was very nice but very slow so was here 2 days,

did a lousy job of making my bed and moping the kitchen floor. But

at least the house looked good that week when my brother, sister-in-

law and 92 year old aunt came down from WI on April 18th to celebrate

my birthday which was April 17th. My brother also helped my son

plant some new shrubs and transplant some for me, plus hung up one

pair of my new drapes for my den and taught Jeff how to do the other

one. We went out to dinner the first night, but my sister-in-law

insisted on cooking the next day & since I had plenty of food in the

freezer and frig I let her; but wasnot happy after they left when I

discovered she rearranged stuff in my freezer which I had just

organized. The lady who had cleaned the frig for me had also

rearrange things which I had just arranged before they got here so

that was frustrating. And now it is 2 months later and the whole

place could stand work on it again. although the grand kids did help

by vacuuming the floor for me, taking out trash, etc. when they were

here for a visit last week.

The doctor has given me permission to visit my family in HI; but

because the volcano is still spitting out the Sulfur Dioxide my son

doesn't feel it is safe for me to make the visit. Also I have not

felt up to it. My son that lives next door to me has been quite

depressed since DHL announced their plans to drop ABX air and have

UPS take over their US deliveries. That mans 10,000 people who work

for ABX Air will be getting laid off. My son is the Benefits Manager

for ABX Air. I sure hope he finds a job in this area that he is

pleased with. He has been contacted by headhunters already. I am

still not settle in this new home so I certainly would not want to

move again, although when it got hot and humid I said I was ready to

move to Alaska. (Just Kidding).

I did finally get to see my 2 older grand kids, Miranda and Dalton

again. They were here for New Years and then 1 day the next weekend

with their parents & on June 7th my son in Lafayette could not work

that day and was able to drive them over so Jeff didn't have to go

get them. They were here for 10 days & since I am a YMCA member I

bought a family pass so they could use the family pool while I went

for my physical therapy in the senior pool & the days I didn't have

PT I also used the family pool with them. So we used the pool 6 days

and they really enjoyed it. They did tire me out (mostly because I

was having the diabaetic problem); but they were also helpful.

Whenever we went somewhere Miranda would put my walker in and take it

out of the care for me, which helped me with my back. I know got

another new walker and this one has the smaller wheels like my

original so is not as heavy and easier for me to put in the car. We

also went to the movies last Sat. and saw IN with Jeff; and on

Sun. we went to the Cincinnati Museum and saw " The Bodies " display

which was very interesting. I, of course was most interested int he

lung sections, and noticed some people were interested in the kidney

section or the intestinal section. At first I didn't think I wanted

to go to it, but had changed my mind and the kids were interested.

They are 12.5 and 10.5 in age. I also took them to Sears to have

portraits done. The photographer of course talked me into being

photographed, but I was not pleased with my hair as my color had

faded and I still have the chubby cheeks. In fact, even though I had

gone from 207 lb in Jan. 07 down to 159 in Nov. 07 I have gained

weight back now up to 180 because I have eaten so many banana splits

to raise my blood sugar up. I really need to record everything I eat

and look up all the calories etc. but there just are not enough hours

in a day to get everything done. As a post transplant you spend so

much time, taking pills, counting pills, ordering pills, testing

blood sugar, taking insulin, ordering those supplies, plus all the

blood tests, doctor visits, insurance problems, real estate problems

(long story-have a lawyer working on it); but I still go shopping as

often as I feel up to it & have spent way too much money and have

some things to return; but have to find my receipts which I said I

was going to search for tonight but decided if I didn't take time to

do a post I never would.

One thing I have shopped for has been light houses for which I have

become a collector nowd. Another long story you can read about when

I get around to writing my book.

Any of you who are not on Medicare but are up for a transplant do not

worry about the cost of the medicines as the company that makes the

Valcyte will help transplant people with the cost according to the

pharmacy in Indy. Now I have to log off and go take my meds and try

to get to bed earlier tonight. I am now on Oxycodone instead of

Hydrocodone (and it has helped my back pain) plus they have me on

Lyrica for the nerve pain I have had in my right thigh since the

surgery, and Zanaflex a muscle releaxer; but I will only take the

Lyyrica and Zanaflex at night or I would be drowsy all day since I

still take Lunesta at night also. Time to log off it is thundering

again. We have had lots of sever storms including a tornado warming

one night when I moved a bunch of papers to my master bath and closet.

good night all.

Love and Aloha,

Judy - IPF 11/06 Transplant 8/22/07 Happy to be doing better.

[Guest guest]

Judy,

So glad to hear from you. It is so good to read of your shopping sprees, splurges on ice cream and visits with your grandkids. You are very blessed and I know that you know that.

Hugs, Joyce DaltonPulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> Hi All,> It's been quite awhile since I have been on the web site. After the > Jan. 22 biopsies (10 of them) indicated negative for rejection the > doctor took me off of Valcyte a week or few weeks later. I don't > recall exactly when but I got a very bad sore throat and had it for > almost 10 weeks. I saw doctors 9 visits during that time, had blood > tests, sinus scans, throat swabs, thyroid scan, sinus exams, > antibiotics, special mouth washes, finally a fungus medication (which > didn't really help). The only thing that helped was I would eat > sugar free banana popsicles. In fact I would wake up during the > night with my throat hurting so bad I could not go back to sleep so I > would get up and get 2 popsicles and get back in bed and eat them > until finally I got to the point where I would fall asleep eating > them & the next morning would have do do laundry of my sheets, > pajamas and even the mattress pad one time.> > At one checkup with my lung doc in Indy he finally asked me what I > thought we should do about my throat. I looked him straight in the > eye and said "gee I don't know I didn't go to medical school". My > diplomatic son, Jeff, told me later he thought that was bad that I > said that as the doctor looked real frustrated. I replied and just > how frustrated do you think I am after 10 weeks of a sore throat and > all these doctors who cannot figure out what to do. > > Finally the end of April it suddenly occurred to me that the sore > throat had begun shortly after I had been taken off of Valcyte (the > anti viral med that costs $2,000 a bottle if you are taking 2 pills > per day. The last bottle I had gotten was in Dec. when I was in the > Catstrophic area (outside the donut hole) and it had only cost me > $150. Previous ones had cost me $900. Anyway I was going to call > the doc, but had not done it; and that Fri., May 2 the lung > coordinator called me at 5 p.m. and said the doctor decided maybe it > was the virus so he wanted me back on Valcyte, but to take 4 per > day. I realized then on the weekend that the bottle I had would only > last for 2 weeks so called her on Mon. & had her call the hospital > pharmacy for a bottle since I was going over there on May 6. I had > also discovered that weekend that I was in the donut hole as pain > pills and pain patches that the doctor at the Cincinnati Pain Clinic > (who had done an Epidural-which did not help-for my back pain) had > cost me lots of money & I wondered if my insurance was not paying or > if I was in the donut hole. Anyway it turned out the bottle of 120 > pills only cost me $2,500 instead of the $4,000 because I had been in > the donut hole and I went out of the donut hole after paying the > $2,500. So now I am in the Catastrophic category for meds Medicare > Part D the rest of the y ear, meaning most meds will only cost me $2 > or $5 except for a few that I have to pay 5% (so the $6,000 bottle of > Valcyte I got a week ago cost me only $300 for a 90 day supply-then I > got an email this week to stop taking the Valycte and had just gotten > the bottle as the doctor had said he was going to have me on it for 3 > months more.) Anyway within 3 days of being back on the Valcyte my > throat started to feel better and within a few weeks my whole body > started to feel stronger. I had felt terribly weak ever since the > lung collapse in Nov. and I thought it was the 6 mg of Prograf twice > a day plus all the rejection meds they had given me by IVs during my > 10 day stay in the hospital over Thanksgiving.> > I kept hoping the doctor would lower the Prograf but he wanted my > blood results to show 10.2 and it was only showing 8.7 until this pas > Tues. when he showed 23.3. Fortunately I checked my email before > taking my pills Tues. eve & the coordinator told me to not taking any > Prograf that night and to lower my dosage from 6 pills twice a day to > 5 pills twice a day. And I have to have another blood test done this > Tues. The doctor also had lowered my Prednisone from 20 mg to 15 mg, > but I still have the chipmunk cheeks. And even though I had advised > my diabetic doctor when the doctor had lowered my Prednisone from 25 > to 20 mg she would not lower my insulin; and I started having > problems with my blood sugar dropping quite low. Finally one night a > week or so ago it had dropped to 59 and I called her emergency number > which I am supposed to do if it goes below 70 & she lowered my > Levimer from 6 units to 4 units. I had an appointment with her this > past Fri. & she now has lowered it to 2 units. She also lowered my > Novolog at dinner time from 6 units to 4 units; but has not lowered > my lunch time units which has been 8 units since Nov. So I simply > get a Starbucks Frapachino or eat something in the afternoon to keep > my blood sugar from dropping too low as I believe that 8 units is > still too high.> > I alsohave developed such sensitive skin I bruise terribly easy or > cut easily & when my skin gets cut I have to cancel my water > therapy. Last Tues. when we took the kids home to Lafayette after my > doctor appointment in Indy I went over to their fense to pat the > heads of 2 of their dogs (pit bulls) who were happy to see me & one > had his paws on the fence and apparently touched my arm as it started > to bleed. It has healed now; but today I was screwing a candle light > bulb in and it burse in my hand and cut my finger & broken glass flew > all over me so I had to call Jeff to come over and vacuum me and the > area before I could even move. Also a week ago on Fri. morning I > woke up with horrible leg cramps and could not move or get out of > bed. Thank heavens my grandkids were here; but I had to call them on > my house phone and yell for help on my answering machine for Miranda > to get a heat pack and put it in the microwave. If they had not been > here I would have had to call 911. Now I have bought a new heating > pad and keep it beside my bed in case that happens ever again. I > have been taking potassium so the doctor said my magnesium could have > dropped and caused that. but since they took me off the valcyte I > have not been having the cramping so hopefully that will not happen > again. Time to take my pills and I have rattled long eough. > > Kerry did call me the other day & I told her I will scan my water > exercises and post them on our web site if it will take it. I would > recommend anyone who is going to have a transplant to be doing such > exercises in advance to help build up your strength in advance. Or > if you can do any other kind of fitness exercises now, by all mans do > them. I need to get back to using the NuStep machine at the Y as it > was one machine they had me use when I had my Pulmonary Rehab before > my transplant and after. Before the transplant I also was doing the > treadmill but very slow and weak & they have not had me do that since > the transplant yet.> > I did hire shome to help organize my house in April and another lady > to do some light housework. They were both helpful, but it was > expensive and the organizing did not satisfy me as somethings I then > had prlblems finding and somet things were put in the attic that I > did not wanat in the attic. Also the lady who did the housework was > not the greatest. She was very nice but very slow so was here 2 days, > did a lousy job of making my bed and moping the kitchen floor. But > at least the house looked good that week when my brother, sister-in-> law and 92 year old aunt came down from WI on April 18th to celebrate > my birthday which was April 17th. My brother also helped my son > plant some new shrubs and transplant some for me, plus hung up one > pair of my new drapes for my den and taught Jeff how to do the other > one. We went out to dinner the first night, but my sister-in-law > insisted on cooking the next day & since I had plenty of food in the > freezer and frig I let her; but wasnot happy after they left when I > discovered she rearranged stuff in my freezer which I had just > organized. The lady who had cleaned the frig for me had also > rearrange things which I had just arranged before they got here so > that was frustrating. And now it is 2 months later and the whole > place could stand work on it again. although the grand kids did help > by vacuuming the floor for me, taking out trash, etc. when they were > here for a visit last week.> > The doctor has given me permission to visit my family in HI; but > because the volcano is still spitting out the Sulfur Dioxide my son > doesn't feel it is safe for me to make the visit. Also I have not > felt up to it. My son that lives next door to me has been quite > depressed since DHL announced their plans to drop ABX air and have > UPS take over their US deliveries. That mans 10,000 people who work > for ABX Air will be getting laid off. My son is the Benefits Manager > for ABX Air. I sure hope he finds a job in this area that he is > pleased with. He has been contacted by headhunters already. I am > still not settle in this new home so I certainly would not want to > move again, although when it got hot and humid I said I was ready to > move to Alaska. (Just Kidding).> > I did finally get to see my 2 older grand kids, Miranda and Dalton > again. They were here for New Years and then 1 day the next weekend > with their parents & on June 7th my son in Lafayette could not work > that day and was able to drive them over so Jeff didn't have to go > get them. They were here for 10 days & since I am a YMCA member I > bought a family pass so they could use the family pool while I went > for my physical therapy in the senior pool & the days I didn't have > PT I also used the family pool with them. So we used the pool 6 days > and they really enjoyed it. They did tire me out (mostly because I > was having the diabaetic problem); but they were also helpful. > Whenever we went somewhere Miranda would put my walker in and take it > out of the care for me, which helped me with my back. I know got > another new walker and this one has the smaller wheels like my > original so is not as heavy and easier for me to put in the car. We > also went to the movies last Sat. and saw IN with Jeff; and on > Sun. we went to the Cincinnati Museum and saw "The Bodies" display > which was very interesting. I, of course was most interested int he > lung sections, and noticed some people were interested in the kidney > section or the intestinal section. At first I didn't think I wanted > to go to it, but had changed my mind and the kids were interested. > They are 12.5 and 10.5 in age. I also took them to Sears to have > portraits done. The photographer of course talked me into being > photographed, but I was not pleased with my hair as my color had > faded and I still have the chubby cheeks. In fact, even though I had > gone from 207 lb in Jan. 07 down to 159 in Nov. 07 I have gained > weight back now up to 180 because I have eaten so many banana splits > to raise my blood sugar up. I really need to record everything I eat > and look up all the calories etc. but there just are not enough hours > in a day to get everything done. As a post transplant you spend so > much time, taking pills, counting pills, ordering pills, testing > blood sugar, taking insulin, ordering those supplies, plus all the > blood tests, doctor visits, insurance problems, real estate problems > (long story-have a lawyer working on it); but I still go shopping as > often as I feel up to it & have spent way too much money and have > some things to return; but have to find my receipts which I said I > was going to search for tonight but decided if I didn't take time to > do a post I never would.> > One thing I have shopped for has been light houses for which I have > become a collector nowd. Another long story you can read about when > I get around to writing my book. > > Any of you who are not on Medicare but are up for a transplant do not > worry about the cost of the medicines as the company that makes the > Valcyte will help transplant people with the cost according to the > pharmacy in Indy. Now I have to log off and go take my meds and try > to get to bed earlier tonight. I am now on Oxycodone instead of > Hydrocodone (and it has helped my back pain) plus they have me on > Lyrica for the nerve pain I have had in my right thigh since the > surgery, and Zanaflex a muscle releaxer; but I will only take the > Lyyrica and Zanaflex at night or I would be drowsy all day since I > still take Lunesta at night also. Time to log off it is thundering > again. We have had lots of sever storms including a tornado warming > one night when I moved a bunch of papers to my master bath and closet.> > good night all.> > Love and Aloha,> > Judy - IPF 11/06 Transplant 8/22/07 Happy to be doing better.>