Re: Flu shots, etc. /

October 15, 2004

Hi ,

Thanks for keeping touch. Glad your on the hunt for a flu shot for your

hubbie. My husband also has asthma. In fact I literally ran him to the ER last

year with a bad attack. It was so bad I was literally driving through red

lights. It took 2 back to back Neb treatments and a shot of Epi to get him

through it. Whew it was a super drag. Now check this out, his doctor (not

Internal Medicine I assure you) said he WAS NOT considered in the high risk

category for the flu shot. Figure that one out..... I didn't know that until

this morning when he told me that. I keep asking him if he would consider an

Internal Medicine physician instead, but he likes that doc, so....so be it.

Then after I found out I couldn't get any more flu vaccines for my little

patients in this quite large hospital, I began to think about me being on

CellCept, and the fact that I can not receive the flu shot due to allergies to

eggs, and now he is not considered high risk, so what now? So I called his

doctor and they said they MIGHT be able to get him a voucher, they were not

sure. But alas tomorrow may be the last day for flu shots around here, which is

a utter drag, and it's his turn to work this weekend.

We have told tons of patients if they missed the last flu clinic we gave last

week to come on Oct 22. We have no idea who all we told that to, and since we

just found out today that our supply is depleted, well I feel SOOOOOO BADDDDD,

for my little patients.

Thanks for asking about me, I'm doing fine. I still think (hope) the pitting

edema is from the CellCept. Perhaps the shortness of breath is related to the

extra 16 (!) pounds of fluid. No PND, or orthopnea, thank goodness. Although

no one on site here has had edema (at least that I have talked to), it occurs in

about 28 to 67% or so of patients on CellCept. My white count is also going up

(about 11,000), instead of down, and I'm constipated instead of diarrhea. So I

guess I'm just one of the weird ones ??? The drug is so weird, when you read

the stats, leukopenia is just as prevalent as leukocytosis, constipation is just

as prevalent as diarrhea. Oh well, if I have great results like little Miss

Rita, I'll be as pleased as punch.

The ECHO was today. You know how the tech isn't supposed to tell you anything,

well he must have seen my occupation on the paperwork (I never tell them unless

they ask, cause I don't want them treating me any different than any one else)

so he was a little bit enlightening. So far a bit of mitral and tricuspid

regurg, but couldn't really elaborate on LVH or diastolic compliance, and these

are the things (along with valvular heart prob) that they look for in Fabry's.

So wait and see from Dr. T. She is an absolute sweetheart. I'll probably know

more early to mid next week.

BUN and creat. are still as stable as they can be. GFR is still @ 60%.

Proteinuria is still about 1 gram, but that's a lot better than 3 grams. I

think that's why PCP wanted the ECHO, cause doesn't really look like

deteriorating renal function. Hopefully not related to Fabry stuff. They

didn't do a BNP, but you're perfectly right, that would have been a good

thought. Mayo neph wants another 24 hour urine, so I'll be transporting it on

the plane again at Thanksgiving. Hopefully this will go better this time. It

has been such a pain to bring on the plane from Denver. Security is " almost "

too tight. You go through about 15 security agents, and have to prove why your

bring urine on the plane-- show them all the Mayo stuff etc. Bit of a bummer,

but could be worse. My son is a joker and says, Mom, just tell them it's a

kidney and show them your ID from work. (HEHEHE) Good thought though.

Will have my blood redrawn for Fabry's on Monday. They repeat the

alphagalactosidase level first, because their parameters are a different scoring

reference. They draw actually 12 tubes of blood for the whole thing, so if the

alphagalactosidase comes back really low again, they then procede in trying to

locate the mutant gene. Kinda sounds like Rob's stuff huh? Supposedly may take

months, so that's almost a blessing, can't get nervous for months, right? So

wait and see. I still haven't gotten the package back from the post office from

when they supposedly couldn't deliver it to Mount Sinai. I hope it comes

tomorrow, so I can send my info packet back to them with the new blood samples.

It was about 18 pages of questionnaires + genetic family history for 3

generations plus all my biopsies and neph records. Uggg. Will cross my fingers

it comes back tomorrow.

How are you and Rob doing? Any news from the neph that's the guru on Alport's?

Thinking of you guys often. Hope and pray everything going well. Take the best

of care. Bonnie

snooksmama@... wrote:

Bonnie:

Rob and I got ours last week. On the hunt for one for my hubbie. Rob and

I are both on meds for our arthritis that cause us to be somewhat

susceptible to infection. Hubbie has asthma, so he needs one too...

I also wanted to say that I have been very worried about you and your

swelling...is it any better at all??? What is your BUN and creatinine

running? Have they thought about doing a BNP on you just to make sure ? I

think I read you were having an echo....how did that go?

I have you in my prayers!

, mom to Rob

On Fri, 15 Oct 2004 17:40:05 -0700 (PDT) Bonnie Duran

writes:

I know you guys have probably heard this a million times, but let me

reinforce this due to personal as well as profession concerns.

I take care of seniors with many multiple illnesses and many who are

immunocompromised, (on chemo or CellCept or Prednisone etc). We were

supposed to have tons of flu shots available at the hospital I work for (

a very large hospital in a large city), because we did not order our flu

vaccine from the company that had their flu vaccine recalled. In fact we

supposedly had so much vaccine coming that we had innumerable flu clinics

set up all over the city.

At approximately 10:00 am this morning I found out that all of our flu

clinics were cancelled due to shortage of vaccine. Last available

clinics supposedly are tomorrow. This is supposed to be true all over

this large city I work at, and the smaller city I live in 40 miles from

here as everyone is nearly completely out of vaccine.

I was not really even thinking about me being vaccinated because I am

allergic to eggs. However I am now on CellCept so am immunocompromised,

so my husband should be given the flu shot. The potential problem is he

must get a voucher from his physician to get it, (whom I've obviously

called). But I really didn't think it was going to be a problem because

" we had so much vaccine available " at the hospital I work at. Well guess

what..........

Moral of the story, if you haven't gotten your flu shot yet, or you are

on immunosuppressant drugs, get your flu shot ASAP, or if you cannot

receive the flu shot due to allergy to eggs etc, your husband (wife) or

close family members should try to receive it, (so if you are

immunocompromised they won't be able to give you the flu.)

If you are on immunosuppresant drugs, neither you or your close family

member should receive Flumist (the nasal form of the vaccine, as it is

the live vaccine.) If that is the only way your family can get the

vaccine, (since the shots are really really hard to come by, and my

understanding is that the nasal form may be easier to get) and you are

on immunosuppressant drugs you must not be in close contact with them for

21 days.

Also those folks with asthma also should not receive Flumist.

I'm sure there is other contraindications for the nasal form of it, but I

don't know all the scoop off the top of my head.

Hope this may be helpful to someone. Please excuse me if this info was

posted previously, as I have not had time to read all of my email lately.

But just wanted everyone to know, that around this area, tomorrow seems

to be about the last day. Total bummer. Bonnie

October 15, 2004

Bonnie:

My husband has been lucky. His asthma has been virtually non-existent

unless he gets a URI. We do have a nebulizer at home, Rob had asthma

since 1 year old, and it saved us many trips to the ER by having that on

hand. I am sorry that your hubbie suffers with asthma. I hope that they

give him a voucher, to protect both he and you!

I do hope that you get good results from the Cellcept...it would make all

the edema more worth it, huh?? I cannot imagine working and being on your

feet with being that swollen. I also cannot believe that your package was

lost. That is so irritating! I have lost all confidence in our postal

system as well as Fed Ex. This summer, Fed Ex delivered Rob's growth

hormone which costs $5000 a shipment (thank God we only pay $35) and they

put it on our front porch. The color of the box blended into the brick

and we didn't notice it until it had been in 90 degree heat all day. The

shipment was ruined. I was sweating bullets until I could contact the

pharmaceutical company. Thank God they sent another shipment at no extra

charge! I had to read Fed Ex the riot act about that! Then I was waiting

for some materials from the Arthritis Foundation for some fund raising I

am doing, and it was returned by the post office to the AF as

undeliverable. The address on it was absolutely correct...go figure. I

hope that you are able to track down your package to retrieve all the

work you had to do. I hope that you kept copies! I am so sorry you have

to have all that blood drawn again...what a bummer. I hope that the echo

is ok, too..you have a lot on your plate right now, that is for sure.

Good luck on security at the airport. We had some fun with Rob's growth

hormone this summer. Had to have it hand checked because if it goes

through the xray equipment, it gets degraded. Well, the security woman as

soon as I told her his little cooler needed to be hand checked, screams

" SECURITY " and the whole world starts staring at us. It was checked in

about 10 minutes, but there was no need for her to make such a big deal

of it by screaming!

Rob's kidney biopsy tissue was sent off to Dr. Kashtan in Minnesota last

week (he's not at Mayo, I don't think). It should take over a month for

the results. They are doing more testing to look at the collagen to get a

better determination on his classification of Alports and his prognosis

for his kidney function. He goes back to the neph on 10/26, sees

rheumatology that same day too. Its funny, his pediatrician got us some

100 mg Cozaar samples to use until his mail order prescription was

delivered, and I had to cut the pills in half as he is only on 50 mg. But

I didn't use them up once I got the 50 mg pills...I saved the 100 mg

ones, thinking that it is a real possibility that they could raise the

dose. Hoping that was an 'insurance policy' and his urine will look much

better when we go back and that his dose won't need to be raised!

On another good note, Rob's Enbrel he injects 2 times a week for his

arthritis is really getting him feeling better. We are so grateful! He

hasn't been able to ride a bike for over 2 years (spent the first summer

after diagnosis on crutches and in a wheelchair) and he is able to ride

again! He still has significant pain, and some of it may always be with

him, as his hips probably have permanent damage and will have to be

replaced in the next 10-15 years, but we are so encouraged by all this!

Keep us posted on what is going on with you Bonnie. Wish I could wave a

magic wand over the whole list and get all you guys feeling better...and

for everybody waiting, that all of them receive their

kidneys...especially Pierre...I'll keep all of you in my prayers...

Take care.

, mom to Rob

October 16, 2004

Hi Marie,

That is such a long time to wait for biopsy results, but hopefully Dr.

Kashtan will be able to give you a definitive diagnosis and prognosis for Rob.

Please do let us know what his Neph says on the 26th.

It pleases me to hear that Rob is now able to enjoy riding his bike. He

needs to just be a kid without being confined by his pain so it warms my heart

to

hear his injections are helping.

God bless you both,

In a message dated 10/15/2004 9:11:22 PM Pacific Daylight Time,

snooksmama@... writes:

> Rob's kidney biopsy tissue was sent off to Dr. Kashtan in Minnesota last

> week (he's not at Mayo, I don't think). It should take over a month for

> the results. They are doing more testing to look at the collagen to get a

> better determination on his classification of Alports and his prognosis

> for his kidney function. He goes back to the neph on 10/26, sees

> rheumatology that same day too.

October 18, 2004

Hi ,

Sorry it's taken me so long to write you a " little " note back. You and I are so

funny, seem to have a lot in common, including our " little notes " . But I wanted

to make sure I had enough time to say more than a mere hello. Good thing Pierre

doesn't have to pay by the number of lines, like we do for transciption, huh?

I took the day off today. Wow, what a difference to " smell the roses " .

had talked to me about that several weeks ago, and boy did I ever need to do

that. I had dinner with my husband, (also a rarity) and told him how much we

can can take for granted. Simple things like sitting out in the back yard and

playing with the dog. I can't tell you how long it had been since I've done

that. It was an absolutely gorgeous day. I had my blood redrawn for Mount

Sinai and Mayo. I got my package back from the post office on Saturday all

intact. Whew. I was hoping they wouldn't lose all my med records etc. Then it

was my turn to make a " boo boo " and sent everything out this morning, but when I

checked my email this afternoon the research coordinator at Mount Sinai

mentioned she didn't have my biopsy report yet. My jaw sunk. I knew I hadn't

remember to put the " little " packet of info. (20+ pages of questions etc along

with the biopsy report and Dr. F's progress notes) in with the

test tubes of blood. I accidently had left the packet in the old box that was

returned from the US postal service. I ran back to FEDEX this afternoon, and

the girl that waited on me was sooooo nice. She said " no problem, I think I

still have them both here " , I won't charge you, you paid enough for it the first

time around. ($30.) It was so cool. I couldn't believe how stupid I was. I

have to say, I know I am spoiled regarding the postal service and FEDEX. My

packages to the soldiers always went through the postal service " overnight " , and

always made there fine, in the middle of Baghdad. (although it really isn't

overnight). My packages to also get to Germany just fine. So when I was

down in the dumps about having to redraw the blood, it was not in good faith.

So what's another stick? I ended up taking the day off and " smelling the roses "

by having " their " mistake. OK then. (smile). I'm so sorry that you guys had

trouble with Rob's hormone being delivered last

summer. Does it come FEDEX every so often? Now that I get a bunch of medical

stuff from Mayo fairly consistently, what I've been doing is to leave a cooler

outside the front door with instructions for FEDEX to put the package in the

cooler. That way I know the little critters around the neighborhood won't

delight in putting their " golden nectar " (as says) on my package and just

seems to help FEDEX. So far it's worked out really well.

I totally agree with you on the airport security stuff. My oh my, if I can

avoid that one, it is well worth the price of 1 more motel night. Unfortunately

when I went to book my next flight (the day before Thanksgiving), all of the

seats were booked. So I've got to travel with 24 hour specimen again. Oh well,

maybe it's another one of God's lessons, the more I do it, the easier and more

efficient it will get, (?). I'm gonna learn this lesson yet.

I got on the web site for Mayo to check if Dr. Kashtan was there, but no luck.

There's a great medical facility (so I hear) at the University of Minnesota, and

perhaps he is associated with them. I was hoping he was associated with Mayo,

so maybe if he ever wanted to see Rob there, we might be able to meet up with

one another in Minneapolis. Anyway, you'll surely need to let me know if you

have to make a trip up to that neck of the woods. Dana (on site here) lives

close to there too.

I'm really glad Rob is doing well on Embrel. How long will he need to take it?

Any problems with injection sites? I've had a few people on it, but some have

had to discontinue due to side effects. These have been patients with multiple

comorbidities, therefore may have been due to involvement of other systems etc.

What a treat that he is able to ride a bike again. Does he do physical therapy

for his hips and arthropathy?

It is amazing how much we truely do take for granted, isn't it? Does he belong

to Alport's support groups?

I'm doing well. The edema was worse this weekend and my B/P was 168/86.

Bummer. Hadn't been that high in months. But I'm not on all the stuff I was on

before either, and obviously have more edema than I've had before. Due to the

research protocol, no ARB at the moment, just ACE. Avapro worked awesome on me

before in addition to ACE. The good news is today the swelling was a little

better. And I purposefully didn't weigh myself nor did I take my blood

pressure. But my headache was better. I did email Mayo, just to let them know

that it had been up most of the week. I chugged the water, laid even lower on

the salt and everything seems a bit better today. Morale of the story... maybe

I just need to take more days off.... yeah right, wishful thinking. Well better

run, I'm sure I'm boring some folks here, but just wanted to apologize for not

being able to say howdie until today. You guys take good care, and have a great

week. Bonnie