I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: kitkatz on May 07, 2015, 02:38:53 PM
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Here we go again. When I saw my new nephrologist she highly recommended I try for transplant again. Sigh. I do not know if I really want to do it all again but thought what the hell, give it a shot.
So today I had a phone call from the new transplant coordinator. I never really expected the call because Kaiser has been to lax about things nephrology related for me for so long.
So I now have transplant clinic class June 17.
I need surgical clearance, cardiac clearance, urology clearance,and dental clearance. Among other things I am sure will come up.
Wish me luck. I am personally scared out of my wits to be doing this all again.
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Good luck! :flower;
I hope it all goes smoothly for you.
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Oh, best of luck to you!
I hope you will share your experiences with us. I'm very eager to hear how things go for you! :2thumbsup;
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Good luck! Please keep us posted.
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:waving; I hope all goes well for you!
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I wish you the best of luck!
:flower;
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Hope all goes well!
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I'm sure you'll pass all those tests!
:beer1;
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Hi there kitkatz i hope all goes well for you i am waiting for the call from the hospital to so they can arrange things for me i wish you all the best fingers crossed for you :bandance; :thumbup;
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Try to look at it in smaller pieces rather than this whole overwhelming thing. It is a lot. We're here for you.
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Good Luck :flower;
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All the luck in the world babes
:flower;
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I stopped and lit a candle in church that this works out.
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This is great news, Kit. And you'll pass with flying colors! :2thumbsup;
:grouphug; :cuddle;
Thinking of you and continuing to hope for the very best.
Aleta
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Things move slowly in the Kaiser Hospital world so a month later....
I have my approval to move forward to medical testing at Kaiser 1st round of tests.
So:
blood work
chest X-ray
tb test
pap smear
mammogram
colonoscopy
clearances from pulmonary and cardiac docs
heart test
stress test
abdominal scan
electro-cardiogram
I have been in contact with internal med doc to get tests approved and referrals.
Need to see dentist whom I have not seen a while. I should have kept up those appointments. Sigh.
I am at a BMI of 34 just below the cutoff for BMI at transplant center. Working out three days a week to keep things under that BMI.
So here we go again with the circus.
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That's VERY good news, thanks for sharing it with us! You've been such an inspiration, a lot of people here are rooting for you. I know he was talking about foreign policy but as Pres Reagan said (with my own little revision made to it) hope you have "peace through strength". Ah yes, life is like a circus. Or a carnival ride. Hope you "get the brass ring"!
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We both know it is a bit of a slog to get all of the testing coordinated and then actually done, and it can really try your patience. But you've done it before and can certainly do it again. We're all rooting for you! :grouphug;
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So I have been a busy little transplant pre-evaluation patient.
DONE:
blood work- done. They took 18 tubes in only one stick. I was amazed! 6/23/2015
chest X-ray- done 6/23/2015
electro-cardiogram- done 6/23/2015
dental clearance- done 6/24/2015 Teeth cleaned. I need a crown on one tooth.
clearances from pulmonary - clearance given 6/23/2015
TO DO:
tb test- called coordinator and have blood test for it on the books. Phone call 6/23/2015
pap smear- in contact with doctor for orders 6/23/2015
mammogram- in contact with doctor for orders 6/23/2015
colonoscopy- scheduled for Tuesday June 30.
another pulmonary function test ordered and scheduled for July 10
cardiac docs- visit scheduled for June 26
heart test- waiting on doc visit
stress test- waiting on doc visit
abdominal scan- scheduled for July 1
Just running it through the mill.
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Wow! That list is not for any one-stop shopping! Doubt even Martha Stewart could do ALL THAT. Thanks for sharing...Go Girl Go! :thumbup;
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Things move slowly in the Kaiser Hospital world so a month later....
I have my approval to move forward to medical testing at Kaiser 1st round of tests.
So:
blood work
chest X-ray
tb test
pap smear
mammogram
colonoscopy
clearances from pulmonary and cardiac docs
heart test
stress test
abdominal scan
electro-cardiogram
I have been in contact with internal med doc to get tests approved and referrals.
Need to see dentist whom I have not seen a while. I should have kept up those appointments. Sigh.
I am at a BMI of 34 just below the cutoff for BMI at transplant center. Working out three days a week to keep things under that BMI.
So here we go again with the circus.
Crikey kitkatz,
... you certainly have been very busy!
... and you continue to be busy ... and it is all in a good cause ... !
I keep my fingers crossed for you and wish you the best of luck,
best wishes from Kristina. :grouphug;
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Good luck Kitkatz! I hope there will be a silver lining for you after all these tests and procedures are completed.
:flower;
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You're ripping through them at an amazing pace!
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Oh! Colonoscopy! :sir ken; :sir ken; That one isn't much fun. At least the prep for it isn't. Be sure to tell them you are a dialysis patient so they have you do the kidney friendly prep.
I'll be thinking of you!
:grouphug;
Aleta
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Oh! Colonoscopy! :sir ken; :sir ken; That one isn't much fun. At least the prep for it isn't. Be sure to tell them you are a dialysis patient so they have you do the kidney friendly prep.
I'll be thinking of you!
:grouphug;
Aleta
And if they haven't mentioned it, ask for a pediatric scope.
:cuddle;
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God love you Kit. You are doing so wonderfully, just getting so much done in such a short time. I wish you the very best.
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Oh! Colonoscopy! :sir ken; :sir ken; That one isn't much fun. At least the prep for it isn't. Be sure to tell them you are a dialysis patient so they have you do the kidney friendly prep.
I always email my neph when I get an Rx from another MD to give him a chance to object (he's very good about replying).
There are two common protocols for sedation - fentanyl+versed or milk of amnesia (propofol). The former is cheaper and (at least in the hospital I use) does not require an anesthesiologist. The later is more expensive (a few hundred extra for the anesthesiologist), and some insurance companies balk at the extra cost. But, it's a lights out procedure with no after probe grogginess. Just be sure to leave your phone on "record" mode unless you are in a state like MA where doing so is a felony.
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Hi kitkatz go for it why not and the best of luck to you wishing you well :clap; :2thumbsup;
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6/26/2015 Cardiologist wants two types of angiogram. One is the arterial line the other is the veinous line to check heart and lungs. Seems to think i may have a hereditary lung problem or else the sticky valve is sticking more than it should. They will do both at the same time so only one procedure, I am hoping.
We need to sort this out and he seemed to think that is the best way to do it. Otherwise he cannot give me clearance.
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Let us know when the two angiograms are scheduled! I hope they can do both in one go.
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I am logging the appointments for transplant evaluation here so I have instant access to it in case I need it.
So.... an update....
6/30/2015- Endoscopy and colonoscopy- the endoscopy showed stomach was good. Colonoscopy was incomplete due to scar tissue. Doctor said if follow up is wanted, then do the barium enema next. Sigh. All that prep.....
7/1/2015- Abdominal scan and doppler scan plus mammogram completed. I feel like I have gone a round with a boxer. I am sore all over. The tech had to press hard on the abdomen to see the veins and arteries, and then my organs. Then the boobs got squished.
I spoke to transplant coordinator 7/1/2015, and told her that gynecology and internal med doctor will not let me do a pap smear for transplant evaluation because the test I have is good until 2016. She says " They can't dp that." I said: " That is what they told me." Trapped like a rat again in the middle. She is emailing my internal medical doctor to straighten it out.
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My tx coordinator accepted my pap smear results from the previous year, so why won't yours? Most insurance won't pay for such tests repeated within one year unless there is good cause. Well, let them sort it out amongst themselves. Good luck!
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2011 was the last pap smear but nothing was abnormal so every five years they say.
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Huh! I've been getting pap smears every year for as long as I can remember.
Whoops. TMI! :yahoo;
I hope they can sort this out among themselves. You have ENOUGH to do! :cuddle;
Aleta
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I am logging the appointments for transplant evaluation here so I have instant access to it in case I need it.
So.... an update....
6/30/2015- Endoscopy and colonoscopy- the endoscopy showed stomach was good. Colonoscopy was incomplete due to scar tissue. Doctor said if follow up is wanted, then do the barium enema next. Sigh. All that prep.....
7/1/2015- Abdominal scan and doppler scan plus mammogram completed. I feel like I have gone a round with a boxer. I am sore all over. The tech had to press hard on the abdomen to see the veins and arteries, and then my organs. Then the boobs got squished.
I spoke to transplant coordinator 7/1/2015, and told her that gynecology and internal med doctor will not let me do a pap smear for transplant evaluation because the test I have is good until 2016. She says " They can't dp that." I said: " That is what they told me." Trapped like a rat again in the middle. She is emailing my internal medical doctor to straighten it out.
Sounds like you were hit by a mack truck. Hope you get the weekend off to do whatever the heck YOU want to do and if you have to, just tell everybody else to go jump in a lake.
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July 6-7th, 2015. Sleep Study or as I called it "torture by wire in bed".
I went to Kaiser's sleep lab last night and did the sleep study.
The tech was very nice and wired me up.
Results will be back I guess when they get back to the doctors.
The last hour or two were sheer torture. I have no idea how long I was asleep but when I came awake, I was ALL the way awake.
It was sheer torture and I had to use all of my adult coping techniques to lie there and try to pretend to sleep.
It is over now, and one less thing to do on the pre transplant evaluation list.
Pic#1- Wired for sound
Pic #2- Close up of wired face
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Wow! Those photos look like something out of a post-apocalypse movie!
I'm glad that's over!
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Kit, you probably should have just gotten up when you came awake. With the leads and sensors they can tell pretty much if you are asleep or awake. :secret;
I've been through that. It makes a mess of your hair, too! :rofl;
Now on to your NEXT adventure!
:2thumbsup; :2thumbsup;
Sending love.
:guitar:
Aleta
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I would be interested in your "results'. I do not know anyone who has had a "sleep study", including me, who was not told they need a CPAP! Another doctor to visit. :banghead;
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You poor thing!! I'd have nitemares after something like that. I suppose they hear a lot of colorful language from patients.
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I've had three sleep studies over the years and as a person with obstructive sleep apnea, I can tell you that we can pretty much sleep through anything. A few wires and probes stuck here and there are no problem.
This also comes from someone who dozed off during a breast biopsy and an MRI. :rofl;
You poor thing!! I'd have nitemares after something like that. I suppose they hear a lot of colorful language from patients.
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Pulmonary Lung Function Test today 7/10/2015. Did much better than last time I did one
I received a call from transplant coordinator telling me the TB blood test shows positive for TB in it. So I will probably be hearing from infectious disease doctors next.
I have been treated in 2007 as a precaution for positive TB skin test during my last pre-evaluation for transplant.
I also got a call from the doctor and finally the pap smear is scheduled for next Thursday. What an argument that was to get! Going to keep that appointment come hell or high water.
Craziness still going on.
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I tested positive for and was treated for TB, too. The infectious diseases doctor told me I'd probably always test positive now. I hope they don't make you go through treatment again.
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July 6-7th, 2015. Sleep Study or as I called it "torture by wire in bed".
I went to Kaiser's sleep lab last night and did the sleep study.
The tech was very nice and wired me up.
Results will be back I guess when they get back to the doctors.
The last hour or two were sheer torture. I have no idea how long I was asleep but when I came awake, I was ALL the way awake.
It was sheer torture and I had to use all of my adult coping techniques to lie there and try to pretend to sleep.
It is over now, and one less thing to do on the pre transplant evaluation list.
Pic#1- Wired for sound
Pic #2- Close up of wired face
Good grief! How do they expect anyone to sleep with all that crap on?
If you pretended to be asleep, how will they know if there's a problem.
I personally think all this sleep apnea stuff is going to go away when the next new money maker comes along.
Good luck with the rest of your tests Kit.
When are you coming to see me?? :waving;
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Best wishes to you kitkatz
and I am sure you pull through all these medical examinations
and I continue to keep my fingers crossed for you.
Good-luck-wishes from Kristina. :grouphug;
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7/14/2015 I had the angiogram
I loved the Dr's name -He was Devine. LOL
It went well and he was willing to use the pain meds liberally. If I said Ouchies He would put more on board.
I have had some tests where that was it, what I got first was what I got and had to suffer through the pain.
This time was fine. I ache today down my right side. I was at Kaiser 7a.m. to 5p.m. Then had dinner, then
went off to spend the time at dialysis.
I am worn out today. Not doing anything perse.
Doctor said heart valve looked good just being sticky like it has for years. All looked good.
I am in recovery mode today.
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This is good progress, KK, and it makes me happy.
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7/16/2015- Infectious disease doctor appointment. Called me at 7:45a.m for an appointment at 9:30a.m. Lady over the phone gives me the wrong building and floor to go to check in at. I hate when that happens. Kaiser Fontana is huge. We ended up walking from building to building. I am to do three sputum samples and take them to the labs each morning so they can get them cooking to see if I have active TB. I do not think these docs realize what they are asking. Each morning for three days I have to do a spit take and then drive to a Kaiser lab and drop it off. I will doit, but it is a pain the ass.
7/16/2015- Pap smear has been completed in spite of the hell they put me through to get one.
Everything on the list has been completed. Now to wait. From 6/17/2-15-7/16/2-15- not to bad lining it up and slamming it down.
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Truly remarkable, to say the least! :bow;
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Ask if Kaiser will accept Fedex or UPS of the samples. I drop my monthly tissue typing blood samples off at a UPS box within walking distance of my house.
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I dropped three samples off Friday, Tuesday and Wednesday. Now we wait for results and meds and appointments.
I now have an appointment with infectious disease early September. I got it all completed, now we wait to see if Kaiser will move my work up onto the transplant hospital.
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Sleep, eat and be merry this weekend. You deserve it! :popcorn;
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Wow! Everything is moving along! :clap;
You'll get 'er done!
:grouphug;
Aleta
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Saw the cardiologist today. He has cleared me for possible transplant. He says my heart is strong, however I do still have the sticky valve, but it is moderate. Nothing that will prevent transplant as far as he s concerned. See me in a year or when needed.
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Good News :bandance; :bandance; :bandance;
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:flower; Great!! :-*
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Woo hoo! :2thumbsup; :yahoo; :thumbup;
Keep the good news coming, gramdma! :cuddle;
Aleta
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I saw the infectious disease doctor about the TB test positive results. He put me on INH and B6 for nine months as precautionary measures for transplant team consideration.
Seems ridiculous to me, but of they want it, I will do it.
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Keep on keepin' on! You can do it! :beer1;
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I had to do the same - IHH + B6 for 9 months. They didn't delay transplant because of it though. My transplant was about 4 months into the protocol. I hope this is the last hurdle you need to cross.
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I like your positive attitude. It's not necessarily something we learn from a book but maybe a teacher...(you).
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I have completed all testing. Just need the final meeting with the nephrologist at Kaiser and then it is off the the Kaiser transplant committee to see if I can move onward to a transplant hospital. I will probably chooe UCLA transplant centers.
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Sounds like it is moving along ....... Best of Luck and God Speed.
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I had the appointment wit the nephrologist today 10/28/2015.
So now my packet of information goes to Kaiser's transplant committee on Friday and we go from there.
I signed paperwork to send stuff out to UCLA, so we shall see what they want or need to proceed.
I have a relative who lives in LA about 15 minutes from UCLA who will let us crash at their house on nights before appointments. So we will at least not have to beat traffic into LA from Rialto.
I also have relatives in Van Nuys if we over stay the welcome with one relative.
So the waiting game begins.
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My sister started dialysis about a month ago and is in the process of getting wait listed at UCLA. Her first in-person appointment is tomorrow.
I hope all goes well for you Kit.
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I am SO rooting for you!!
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I had the appointment wit the nephrologist today 10/28/2015.
So now my packet of information goes to Kaiser's transplant committee on Friday and we go from there.
I signed paperwork to send stuff out to UCLA, so we shall see what they want or need to proceed.
I have a relative who lives in LA about 15 minutes from UCLA who will let us crash at their house on nights before appointments. So we will at least not have to beat traffic into LA from Rialto.
I also have relatives in Van Nuys if we over stay the welcome with one relative.
So the waiting game begins.
Looks like you've covered all the bases and have done everything you can. Good to know that a kidney will have a "good home" with you some day. Obviously that "puppy" will be well taken care of!
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:2thumbsup; :2thumbsup; :2thumbsup;
Let's hope the wait is not long!
Aleta
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The coordinator and doctor were: 'Oh you will go to the top of the list with your time on dialysis." I laughed at them both. I said we all know it does not work that way
I go to the top of the time list, but there are other mitigating factors involved in getting an O+ kidney..
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You can take O+ and O- :)
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You can take O+ and O- :)
Is that true? kitkatz can take 0+ and 0- ? When it comes to type 0 they can take both? Or am I missing an inside location joke and had to be there type of thing...
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I was told the + and - don't matter for transplant.
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I was told the + and - don't matter for transplant.
Right!
You can take O+ and O- :)
Is that true? kitkatz can take 0+ and 0- ? When it comes to type 0 they can take both? Or am I missing an inside location joke and had to be there type of thing...
Recipients with blood type O... can receive a kidney from blood type O only
Recipients with blood type A... can receive a kidney from blood types A and O
Recipients with blood type B... can receive a kidney from blood types B and O
Recipients with blood type AB... can receive a kidney from blood types A, B, AB and O
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I was told the + and - don't matter for transplant.
Right!
You can take O+ and O- :)
Is that true? kitkatz can take 0+ and 0- ? When it comes to type 0 they can take both? Or am I missing an inside location joke and had to be there type of thing...
Recipients with blood type O... can receive a kidney from blood type O only
Recipients with blood type A... can receive a kidney from blood types A and O
Recipients with blood type B... can receive a kidney from blood types B and O
Recipients with blood type AB... can receive a kidney from blood types A, B, AB and O
Thanks for answering that. I haven't quite learned about all the complicated details and hurdles involved in the transplant process. My husband isn't wanting a transplant but nonetheless, we try learning what we can about it.
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Back when BEK Transplant (Shanghai) was advertising prisoner kidneys on the net, they were quoting a $5K surcharge for type O units.
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The coordinator and doctor were: 'Oh you will go to the top of the list with your time on dialysis." I laughed at them both. I said we all know it does not work that way
I go to the top of the time list, but there are other mitigating factors involved in getting an O+ kidney..
Not much, I am pretty sure there aren't a lot of 17 year dialysis patients on the wait list.
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November 17, 2015: Received the phone call today stating Kaiser transplant committee approved my file to be sent on to UCLA transplant center. One more step forward!
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That's brilliant, kitkatz!!! :yahoo;
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That's good news! Today is a good day!
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UCLA called, I have my evaluation appointment on January 25th!
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:bestwishes;
Best of Luck.
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UCLA called, I have my evaluation appointment on January 25th!
That's great! Jenna is listed there, and my sister is going through the process to get listed at UCLA too.
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I'm looking forward to that day, too! :2thumbsup; :yahoo; :bandance;
Aleta
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Today is January 25th. We will be on our way to UCLA for transplant evaluation today. The next hoop to jump through. Wish us luck.
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Hello kitkatz,
Good luck to you and I keep my fingers crossed for you !
Best wishes from Kristina :grouphug;
P.S. I am "jumping" through similar "hoops" at the moment...
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Good luck Kit
:thumbup;
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Hello kitkatz,
Good luck to you and I keep my fingers crossed for you !
Best wishes from Kristina :grouphug;
P.S. I am "jumping" through similar "hoops" at the moment...
Hello again, kitkatz
... I have just been informed that my "hoop-jumping" through all these uncounted barriers and "hoops"
(because of former cancer-issues), has come to an end and I (finally) have been put onto the UK-kidney-transplant-list...
... But I still have to be patient, because waiting on the kidney-transplant-waiting-list here can still take up to 3 to 4 years...
I do hope you are very lucky today with the UCLA-transplant-evaluation and I keep my fingers crossed for you !
Best wishes from Kristina. :grouphug;
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Ooooh, good luck to you. I am eager to hear your thoughts once you've returned home.
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Finally made it home. I have been up since 12 midnight at dialysis last night and finally made it home around 9:30pm.
UCLA Evaluation Notes
I think I saw four doctors today, a social worker and a transplant coordinator. All the doctors listened to my heart and lungs.
Everyone of the said I am going to be a complicated surgical case. I started with a Surgical Fellow,worked my way up to the nephrologist, then the fellow's surgical boss, then the main surgeon guy.
They all seemed pretty positive that if I complete a few more things, I will be sent to committee for consideration.
Hoops:
1. UCLA consult with cardiologist and pulmonalogist about heart valves, and pulmonary hypertension.
2. A Loopogram on the urostomy so they know where things are and if the bowel used is still all clear. Probably done through Kaiser.
3. Genetic blood testing
The off to their committee to see if I get listed.
We then went to see my 106 year old Godmother and visited with her and her grand daughters.
Exhaustipated tonight.
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Hm sounds positive Kit, 3 more hoops 'only'.
Good luck, keep strong and lots of love, Cas
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Hello kitkatz,
I shall continue to keep my fingers crossed for you
and send you my good luck wishes
from Kristina. :grouphug;
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"exhaustipated". That pretty much says it all!
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Wow! Remarkable everything and how many doctors one must go through to be listed. I am in awe of your willpower and appreciate that you share every hoop, loop and hurdle with us.
Since you're a fan, You deserve to blare some OOPS sorry forgot, it's Barry Manilow Elton John in your car. Oh heck, blare it out the windows of your house! :guitar:
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You CAN jump those hoops! And then...... the real wait begins. :2thumbsup;
Godmother is 106???? Wow, I want some of those genes. :shy;
You are on your way, Kit!
:flower; :guitar: :cuddle; :clap;
Aleta
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What a day you had! Will the other tests be quicker to complete?
What's the genetic testing for? It seems like that would just be a blood test, wouldn't it? If so, it should be quick to check off your list.
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So UCLA called. I have cardiac and pulmonologist appointments set up for March 2nd 10:00 and 1:30 respectively.
Hopefully transplant coordinator at Kaiser has notes and can set up the loopogram for me soon.
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I had no idea about the process. It's incredibly difficult and time consuming. You are awesome and thanks for sharing your journey. Wishing you tons of patience and approval for your transplant SOON.
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We hope and pray that you will successfully pass all your tests and evaluations.
We pray for your successful transplant soon.
Thanks for sharing us your story.
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I called my Kaiser coordinator the other day to get updated on stuff rom the UCLA evaluation.
SO...I tell her I have appointments made with cardio and pulmonary already at UCLA and she says to me..."I need to know these things."
I am like...."This is why I called you, to keep you updated."
Why is that my responsibility? Sigh. I thought coordinators were supposed to coordinate.
I try to keep on top of things with these people, otherwise getting lost in the system will happen.
I have cardio and pulmonary appts on March 2.
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::) to your coordinator who apparently thinks you should be doing her job for her.
Good luck on 2 March! I look forward to hearing the results!
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I hope it all goes perfectly for you! March is just around the corner.
From my experience with my coordinator, I learned I needed to leave her voice messages about everything. When I scheduled things, when I completed tests, when I completed vaccinations ... And I learned that she would NOT call me back unless SHE wanted something. They seem to be frustrating people to work with. I suspect they're really just glorified paper-pushers. If we don't give them paper to push, they don't think for themselves that they need to take action.
It's probably a good idea to call her about everything anyway. If your cardio people neglect to leave her in the loop, she could leave you hanging forever, thinking that the ball is in your court. If you initiate the call and the cardio people don't send your results over, she'll know she has to follow up with them.
By the way, as soon as you finish these tests, don't be surprised if they suddenly decide they want another test that they could have told you about weeks ago. That happened to me several times. It was incredibly frustrating when I knew I could have completed Test B while I was waiting for my Test A appointment date.
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My loopogram is scheduled for February 22 at 8am. No prep for it, just s reminder to bring extra supplies. Ummm, duh, I would think so.
I have an appointment with my Internal med doc on the 23rd to see about my left shoulder pain. I hurt every day now all day long. Some thing is wrong.
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I called my Kaiser coordinator the other day to get updated on stuff rom the UCLA evaluation.
SO...I tell her I have appointments made with cardio and pulmonary already at UCLA and she says to me..."I need to know these things."
I am like...."This is why I called you, to keep you updated."
Why is that my responsibility? Sigh. I thought coordinators were supposed to coordinate.
I try to keep on top of things with these people, otherwise getting lost in the system will happen.
I have cardio and pulmonary appts on March 2.
Don't know who to be more concerned about...you or THEM! Incompetency seems to be running rampant these days. Don't know how some people keep their job.
Hope all goes well at your appts and they figure out what is causing that pain in your shoulder and FIX it. Maybe you have to say something like "You know, I've never been known to cause trouble but I am sure thinking about it". Remind them you've got a transplant to look forward to and don't need any more hold ups.
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Loop-o-gram is scheduled for Monday at 8a.m. at Kaiser X-ray Told me should be 45 minutes and to bring supplies. Duh.
I plan to leave there and go see new grand daughter afterwards. See how I feel.
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I made the loopogram and got it done. Doctor was an hour late to my appointment. Sigh.
And they took my pulmonary appointment away on the second and tried to put it on the 21st. I called them and said no, sooner than that. So now I have two appointments. On one the 2nd and one on the 3rd.
Cardiology on the 2nd 10pm.
Pulmonary on the 3rd 2:30pm
Then into rush hour traffic on Thursday to make dinner at 5:30 with dialysis at 7p.m.
Do they think I helicopter in and out of UCLA? No, we drive the stupid freeways in the stupid traffic.
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.... Doctor was an hour late to my appointment. Sigh.
.... Then into rush hour traffic on Thursday to make dinner at 5:30 with dialysis at 7p.m.
.... we drive the stupid freeways in the stupid traffic.
And they wonder why people show up with high blood pressure! My neph kept saying I had white coat syndrome. Um. No. I have "It's a pain in the ass to race here and then spend a half hour looking for a parking spot" syndrome.
I hope it goes well for you!
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Thanks for the update, although I could feel my blood pressure go up as I read it. ::)
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So here it is March 2nd. I had the appointment with UCLA cardiologist. She does not see any reasons for me not to go ahead with transplant process, pending looking at angiogram pics and cardigram pics.
Anticlimactic after all the fuss of keeping the appointment, driving down to LA and getting a hotel room overnight so we do not have to drive to hell and back, only hell, for tomorrow's appointment.
All that driving to UCLA for a ten minute consult. Sigh! One down today, one more tomorrow.
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Onward! :2thumbsup;
But what a bummer to expend so much time, energy and money for so little! :thumbdown;
I'm liking the good news, though!
Aleta
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Great news! I hope today's appointment goes as well as yesterday's!
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Good luck! I know it's a lot of bother, but I hope it will eventually all be worth it. We're all rooting for you!
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:2thumbsup; Keep going Kit!
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Thursday's Pulmonary appointment update:
So I found out this is going to be a process over a few months.
Seems pulmonary hypertension is rare. So they have to find out what is causing it and it needs some sort of treatment before transplant.
There are three reasons I may have it.
1. Sleep apnea- I was tested for it and treated for it the same week I had an angiogram and lung pressure test. If it is the PH clear itself up quickly as I use my mouth appliance when I sleep.
2. Fluid on my body due to dialysis stuff. Congestive heart failure can cause it. Be sure fluid is removed as much as possible. They can treat with a pill.
3. My fistula may be running too fast and causing the PH. They want to do another angiogram and test this theory. If it is causing it, then the fistula has to go and a chest catheter has to be used until transplant.
I have another appointment in six weeks and will eventually get to see the big doc in charge of PH.
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Wow I hope all progresses forward! :2thumbsup;
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Onward, onward.
You can push past this hurdle. :2thumbsup; :cuddle;
Aleta
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Wishing you the best outcomes! Keep swinging! :boxing;
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The transplant coordinator called form UCLA. Surprise! Doctors want you on CPAP for the next three to six months. Can you work on getting this done asap? Doctors never said a word of this to me when I was at the appointment. So I start the day with news that I need to deal with medical stuff. So I call my coordinator with Kaiser and she says she will work on it. In the meantime I emailed the sleep clinic and they called me back. The first time it was "What the heck do you want? Why? " I threw the mess into her lap and said talk to the coordinator. Calls me back and says CPAP is gold standard and yes I can come in and get machine and begin March 25, with a follow up appt April 1. I guess I can get stuff done with Kaiser. So three to six months on CPAP then another heart/lung cath to see if PH is still present.
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Geeze! Does it never end?????
:grouphug; :grouphug; :grouphug;
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It is beginning to seem like your trials will never come to an end. Not really, but it has already been so long and you have been put through soo much!
A little bit about sleep apnea and CPAP. I had my sleep study done long ago. About 02 or 03. I snore like my Dad did. We lost him at age 59. His heart just gave up, to much ? work for way too many years. His snores would almost wake the dead. I swear. Our house was built for us when I was but a baby, so it was still considered pretty new as houses go. But you could just about HEAR the windows rattle. I snored just about that bad. So does my 40 y.o. Son.
My sleep study was much like yours. In-Center, wired for stereo. The Attendant Lady woke me somewhere in the middle of the night and told me to put on the mask, the CPAP. I want back to sleep only to be awakened a number of times by the mask on my face. I quickly realized it was only the mask and immediately went back to sleep. Don't know how many time that woke me up.
In the morning the Lady to me into the Control Room and showed me the play-back of the EEG. Pointed out the squiggly lines of my brain activity and how they 'settle down' as I fall asleep. That's where the lines pretty much quit wiggling and tended to flatten out for a short while. Then a different line jumped, then all the lines started wiggling again. She told me that one is where you snored, or gasped after holding your breathe for a while, and this woke up the brain, but not quite enough to come to full consciousness. Eventually all settled down, and the next snore restarted all the activity. This just kept repeating as long as I was asleep.
Then she fast forwarded to after I put on the mask. He she showed me how everything settled down, then yet another line started waving. This was the sensor next to an eye. She explained this is when I started REM. That stage of sleep that is actually resting the brain. I stayed like that until woken by the mask, and shortly after fell totally asleep again and started REM.
I was issued my first CPAP that morning. It didn't take long to get used to a mask, just a couple of day if I remember. That was in '02 or '03. it's 2016 now and I am on my THIRD machine, having worn out the first two.
I no longer wake up in the mornings feeling exhausted. I no longer go 'on the nod' between 2 and 4 in the afternoon like I used to. I was always soo tired, I was actually afraid to drive in the afternoon for fear I would fall asleep at the wheel!
A CPAP will change your life if you USE it.
Neighbor tells me his Wife sleeps in anothr room as he snores so bad. I have been on him for a few years already to get in and get tested. He is a double AA Prime candidate for an early death from a heart attack if he doesn't start getting some quality rest.
Everyone, take this to heart as this WILL make a positive difference if you snore much.
Take Care,
Charlie B53
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I just had a thought. A CPAP is so important I should maybe copy and edit my post, and repost it as a new thread titled CPAP, an improvement in your life. Or something like that.
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Today I acquired a CPAP machine to use for a week, then it is in for a class on it, and then my own personal machine and equipment. I moved the larger living room in-table into the bedroom and switched out the one in the bedroom. The machine is about the size of large clock radio and is not supposed to be noisy. So now we see how it all works for a week.
One hurdle down.
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I used a CPAP for a while. It was great! I didn't wake up gasping all night long! I slept so well with it!
It was a pain to wash out the hoses every day, though.
But after I lost all that weight, I no longer needed it!
Good luck with it. I hope it helps. :cuddle;
Aleta
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How are things going with the CPAP machine?
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I am coping with it for this week. The first night was crazy with it, I thought "oh hell." The second night two Tylenol and 2 Benadryl put me out to the point where i did not care and slept.
The third night I had no meds and slept okay. This morning after dialysis I put it on a was able to sleep 4 and half hours straight. Happy green face on the machine each morning
Friday I should get my own machine and attend a class on care and maintenance on my own machine. Probably need a different mask. It pinches my sinus area and leaves red marks on my face.
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Wow, good news. Keep us informed when a 'not green' happy face appears in the morning in the mirror
:cuddle;
Love, Cas
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I am coping with it for this week. The first night was crazy with it, I thought "oh hell." The second night two Tylenol and 2 Benadryl put me out to the point where i did not care and slept.
The third night I had no meds and slept okay. This morning after dialysis I put it on a was able to sleep 4 and half hours straight. Happy green face on the machine each morning
Friday I should get my own machine and attend a class on care and maintenance on my own machine. Probably need a different mask. It pinches my sinus area and leaves red marks on my face.
I have to believe if it is pinching you it is too tight. I adjust mine just until I cannot hear any leaking around the edges. Sometimes I just move the mask a bit to accomplish that. I have been using it for about 18 months. I don't fall asleep any time I sit down anymore.
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This sounds like wonderful progress! And the good news is that lack of quality sleep can also contribute to difficulty losing weight! Getting your sleep issues sorted out may make it easier for the rest to fall into line.
Rooting for you every step of the way! :2thumbsup; :yahoo; :clap;
Aleta
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I have my own APAP machine as of today! And new nose mask. Bert at Kaiser gives a good class on the machine.
I also had an echocardiogram again on the heart.
So I spent my morning doing Kaiser appointments. Picked up a few prescriptions. too.
No one at Kaiser stepped on my toes or made me upset today, thank goodness.
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No one at Kaiser stepped on my toes or made me upset today, thank goodness.
Hopefully they realize their good fortune and things will stay that way! :rofl;
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I'm afraid that the more I read about peoples' experiences with transplants--pre, during and post-- the more I scratch my head and wonder why the hell anyone would want to put themselves through such a wringer. It sounds like a torture from start to finish. And such a crapshoot. I'd rather have the devil I know than the devil I don't know but have heard so much about. I realize that I'm out of step with most of the renal universe, but why play with fire?
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I'm afraid that the more I read about peoples' experiences with transplants--pre, during and post-- the more I scratch my head and wonder why the hell anyone would want to put themselves through such a wringer. It sounds like a torture from start to finish. And such a crapshoot. I'd rather have the devil I know than the devil I don't know but have heard so much about. I realize that I'm out of step with most of the renal universe, but why play with fire?
Unfortunately, sometimes "I Hate Dialysis" isn't the best place to come to when needing to read positive experiences with transplantation. I'd say that the majority of IHD members who are transplant recipients doing well are getting on with their lives. They either don't have the need to come on here any longer or may even feel a bit guilty sharing their positive experience while other members are struggling. Then there are those who have less than positive outcomes, from navigating the whole transplant process to experiencing the side effects of the meds and even losing their transplant, who come here to vent and share what they have gone through. And, then again, "doing well," either on dialysis or with a transplant can mean something different from one person to the next. Some can roll with the punches better than others.
If you want to read more positive kidney transplant stories check out this IHD link - http://ihatedialysis.com/forum/index.php?topic=9656.0
Here's my transplant experience: I received a cadaver transplant in 1990. It was slow in "waking up" and I had to go through a period of high doses of solumedrol and then a once in a lifetime only protocol of OKT3 (Muromonab-CD3), a highly toxic monoclonal antibody immunosuppressant drug. I was a mess for 3 weeks. But, the OKT3 did the job. To cut to the chase, I was back to work fulltime 10 weeks post transplant and never looked back. I had 13.5 good, if not great, years with my transplant (including no side effects from the meds) before going into rejection.
I've gone through 3 transplant evaluations. The first was in the mid-1980s and done in 2 consecutive days at the transplant center and then a half day for testing with my urologist back home. I was placed on the cadaver waiting list less than a month later. The second time around eval process, with the same transplant center, took about 2 months time to complete. While being told I was listed, there was a screw up and I wasn't listed as active until 8 months later.
About 5 years later I was put on inactive (but still accruing points) without being told. I found out by accident. Updated testing needed to be performed to make sure I was still a good candidate. I was pissed off, but what good was it going to do? Only way to become active again was to go through the hoops. It took 2 months after the testing. In all, I was inactive for 7 months.
A couple of months ago I decided to double list with a local transplant center. I had to go through the full eval process again. Most of the testing and interviews were done in a two week period with the urology consult scheduled a month later. I've been told once that is completed with a positive result, I should be accepted to their program sometime in May.
At times, I felt like a number, plus the staff running the tests had a one size fits all attitude towards dialysis patients. Example: I had to take a heart stress test. They were going to medically induce a higher pulse rate with Dobutamine/Atropine. I didn't want the meds and stated I could do the treadmill. Even though I had gone through this 2.5 years ago, staff didn't believe someone on dialysis for 10+ years could successfully complete the treadmill portion of the test. Bottom line, I did the treadmill with no problems.
I guess what I'm trying to convey is there's no such thing as the perfect world. Whatever treatment modality you choose, become actively involved to minimize "glitches." The simple, but profound message of The Serenity Prayer has helped me during particularly difficult times and situations. Maybe it can do the same for you:
G-d grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And the wisdom to know the difference.
SutureSelf
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Unfortunately, sometimes "I Hate Dialysis" isn't the best place to come to when needing to read positive experiences with transplantation. I'd say that the majority of IHD members who are transplant recipients doing well are getting on with their lives. They either don't have the need to come on here any longer or may even feel a bit guilty sharing their positive experience while other members are struggling. Then there are those who have less than positive outcomes, from navigating the whole transplant process to experiencing the side effects of the meds and even losing their transplant, who come here to vent and share what they have gone through. And, then again, "doing well," either on dialysis or with a transplant can mean something different from one person to the next. Some can roll with the punches better than others.
Thank you, Sutureself, for your thoughtful response. I agree that there is more press for a place to express "negative" rants than to gloat with the positive. And that skews what I read. I don't think it's lack of serenity that concerns me as I am generally a pretty serene (and very mature at 74) person. I guess I am not suffering enough on PD to want to fix what isn't broken. Maybe at that inevitable point when PD fails (or at least I am led to believe that that point inevitably arrives if you live long enough) and I am forced to choose between in center HD, transplant or death, then perhaps I will be willing to fill my body with the toxic substances that are part and parcel of the tx process. That is my main concern. I have spent my life living "clean." I am extremely sensitive to drugs. It is very easy (and logical) to assume that I will be one of the unlucky ones who has a bad reaction to the awful poisons that are central to keeping a tx going. As an asthmatic I have had my share of run ins with prednisone (even had a dog who died from the secondary effects of it).
So taking a daily cocktail of toxic drugs for the rest of my days is a very terrible concept to me. The super-toxic drugs that go way beyond Pred. are what scare me. Doing a daily, tedious procedure like PD is a nuisance. But it doesn't make me feel sick. It doesn't give me tremors, and panic attacks, and bloat and other symptoms that are both physical, neurological and mental. And certainly is not nephrotoxic.
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My husband's TX evaluation actually went pretty smoothly after one early glitch - some misinformation from the TX social worker.
Once we straightened that out (after 6 months of not pursuing an evaluation), his only took a couple of days. He was on the wait list for less than 3 years before getting a kidney. That was over 5 years ago and the "toxic" meds have not been very much of an issue. The worst of it has been seeing the dermatologist every 6 months to get dubious spots frozen off.
Kit has definitely had to jump through many hoops, but her experience probably isn't typical. :grouphug; Kitkatz!
Of course, each person must make this very personal decision based on their own circumstances and needs. Either way, IHD is a place to get support.
:2thumbsup; :clap; :yahoo;
Aleta
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The saga continues....
So i once again revisited the pulmonary UCLA doctors today.
They want:
A possible fluid only dialysis treatment to remove fluid each week.
Repeat echocardiogram with bubble study
A ventilation/perfusion scan for possible blood clots
A repeat high resolution CT-scan of the chest.
A repeat chest catheterization to see if pulmonary hypertension has gone down.
Test to see if fistula is causing PH.
They want everything done at UCLA by them so they can figure out what is going on with me and Kaiser picking up the bills.
Next appointment June 6th.
Just doing the hoops, one at a time, just doing the hoops....
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A possible fluid only dialysis treatment to remove fluid each week.
What does this mean and what is the point? (It sounds like dialysis without filtering the toxins, and I'm wondering why they would want that versus just removing more fluid with filtering.)
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The saga continues....
So i once again revisited the pulmonary UCLA doctors today.
They want:
A possible fluid only dialysis treatment to remove fluid each week.
Repeat echocardiogram with bubble study
A ventilation/perfusion scan for possible blood clots
A repeat high resolution CT-scan of the chest.
A repeat chest catheterization to see if pulmonary hypertension has gone down.
Test to see if fistula is causing PH.
They want everything done at UCLA by them so they can figure out what is going on with me and Kaiser picking up the bills.
Next appointment June 6th.
Just doing the hoops, one at a time, just doing the hoops....
O Kit I really feel for you, I would go officially mental
:cuddle;
A possible fluid only dialysis treatment to remove fluid each week.
What does this mean and what is the point? (It sounds like dialysis without filtering the toxins, and I'm wondering why they would want that versus just removing more fluid with filtering.)
Iolaire I think they mean Berströming (well that's what it's called in Holland) and it's exactly what you think. Only taking liquids of.
Why not take some toxins out too? It's probably a much cheaper dialyzor?
Love and luck, Cas
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I am trying so hard to keep up with all of the crap I have to do for pulmonary UCLA with Kaiser in the mix too. A phone call from UCLA coordinator, very frustrating. Seems Kaiser will do echocardiogram bubble study, however UCLA wanted to do it all so they could see it. So Saturday dialysis until we have a dry weight determined, then call her back for scheduling of heart catheterization. Then there was the I have approval and an appointment for CT-scan at UCLA on the 12th. She says Kaiser will do it, no I have the approval from Kaiser for UCLA to do it. Well pulmonary did that. Round and round. Damn, get your sh** straight before you call me! So four weeks of extra D, a determination of dry weight then scheduled for tests.
What a bunch of crap.
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A possible fluid only dialysis treatment to remove fluid each week.
What does this mean and what is the point? (It sounds like dialysis without filtering the toxins, and I'm wondering why they would want that versus just removing more fluid with filtering.)
It's called a PUF run (Pure ultrafiltration). I don't know why these are done instead of just more regular treatments. I think PUFs are done with the dialysate side of the circuit dry.
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I'm afraid that the more I read about peoples' experiences with transplants--pre, during and post-- the more I scratch my head and wonder why the hell anyone would want to put themselves through such a wringer. It sounds like a torture from start to finish. And such a crapshoot. I'd rather have the devil I know than the devil I don't know but have heard so much about. I realize that I'm out of step with most of the renal universe, but why play with fire?
Maybe because ANYTHING is preferrable over being a SLAVE to a machine! Kitkat seems to be having an unusually bad experience. But I agree it can be a MASSIVE pain when they seem to order a bunch of tests that have NOTHING to do with the kidney!!
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They want me doing a PUF to get the fluid that is on my heart, off.
I saw my Kaiser neph she is willing to get this crap rolling. Calls for me being admitted to the hospital for a five day/8 hour sessions of dialysis with meds to keep the BP up.
Now to see if Kaiser does it or UCLA.
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I have lost eight real pounds in the last two weeks.
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I got listed today! :yahoo;
Now we just gotta get my live donors tested and hopefully we'll have a match!
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Hurray listed today for you, wish it could happen here soon!!! :yahoo; :yahoo;
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Dietitian Meeting Notes: I talked to the renal dietitian. Showed her my research. She gave me their research. She also gave me ideas to use for dialysis snacks. I have ordered three cook books off of Amazon for 30 bucks to look at and see if I can use them. I have started a dialysis house food book with lists I can use and take with me when shopping. I am marking cook book recipes and going to make a list of things I need in the house in the pantry. Gluten free flour, sugar, baking powder, soda, and spices. Got to set it up in order to begin to cook creatively and well for us. Got to figure out how to get recipes down from servings of 12 to 2, I would not even mark some of the 12 servings recipes in one cook book. She seems to think I am off to a good start in learning good nutritious food ways while on a renal diet.
Medical Notes: My nephrologist says yes I have fluid on my heart that dialysis is not pulling. I am chasing my tail with low bp not enough fluid pull, fluid build up, dialysis....etc. So we are going to do something to dry me out and get it taken care of. Probably admit me to hospital and do 5 days of 8 hour dialysis with good meds to bring the bp up. Plus good meds for me to get through 5 days of dialysis straight with my weird bp. I told her as long as you give me the good meds not the pretend meds to keep me calm and in chair for 8 hours, 5 days straight. Then off to UCLA as soon after for the chest cath to see if the PH is gone or not. Just have to have the docs get it together, plan it, and do it asap. I basically told her let's get this shit done asap.
Today has been hard. I have had a wobbly stomach/ intestine since I tossed my cookies last night at 11 pm. My stomach is teaching me go easy on the food after dialysis. Plus no left overs! I am dealing with a very persnickety system. I am learning that certain foods I cannot eat together. Too much roughage at one time and my entire system objects. I had a tummy ache last night. I used my heating pad all night and hardly slept at all. Miserable. Awoke this morning better, but my BP is crazy low.
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Oh Kitkatz what can I say? Keep strong girl!
:grouphug;
Love, Cas
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Man, Kitkatz I hope they get it sorted out soon. Hang in there! Glad your dietician is being supportive. It's a massive learning curve going on this renal diet... all the "healthy options" I used to go to are now off limits!
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I drove two hours one way and three hours back today for a less than ten minute CT chest scan at UCLA.
At least it is done.
I emailed my nephrologist tonight to see where things are going.
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Any news?
:cuddle;
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Doctor is working on getting me in house for dialysis to pull fluid off me as much as possible.
Hurry up and wait.
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My cardiologist called me and said people have been discussing my case between Kaiser and UCLA to get things moving so we can get the heart and lung tests redone asap, so UCLA can make a determination. He has to see me first, then we schedule procedures at Kaiser and get UCLA all of their numbers and such and them we move on from there.
Finally some action, I thought maybe I was going to have to push someone into doing something for me.
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:2thumbsup;
Let's get this show on the road!
Aleta
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:2thumbsup;
Let's get this show on the road!
Aleta
Ditto!! :2thumbsup;
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Another "ditto" from me!! :2thumbsup;
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I agree with you both. Both docs, the cardio and neph know I am motivated to get on with this testing and quit screwing around with paperwork.
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Update: I now have seen the cardiologist, he ordered blood work that i had done the next morning. I have an appointment on June 16 for the heart and lung cath. My own cardiologist will do it and I am comfortable with him and his ways. He says he will sedate me as much as he can and give me the good drugs. Then an appointment on July 25th to go over results with UCLA people. Then we will see what is next in this process.
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Hello kitkatz,
Many thanks for the update and just to say that I wish you good luck on June 16th and July 25th !!!
Best wishes from Kristina. :grouphug;
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I hope all goes well and you can finally get listed. :grouphug;
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The heart and lung cath on Thursday went really well. My levels are now well below what UCLA wanted. They wanted them below 55 and mine are at 21, 22. I do not really know what these levels are but doctor says they are good. Now to wait until the UCLA appointment in mid-July. See if they still want the bubbly study and other stuff done.
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The heart and lung cath on Thursday went really well. My levels are now well below what UCLA wanted. They wanted them below 55 and mine are at 21, 22. I do not really know what these levels are but doctor says they are good. Now to wait until the UCLA appointment in mid-July. See if they still want the bubbly study and other stuff done.
Sounds like you got thru that last hoop beautifully! Don't know what the "bubbly study" involves but hope you get your transplant so that you might enjoy some of this "bubbly" :wine;
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The heart and lung cath on Thursday went really well. My levels are now well below what UCLA wanted. They wanted them below 55 and mine are at 21, 22. I do not really know what these levels are but doctor says they are good. Now to wait until the UCLA appointment in mid-July. See if they still want the bubbly study and other stuff done.
It's great that went smoothly! Approximately how long is your wait once you get on the list?
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The good Lord only knows transplant wait times. However they did say to have a bag packed because I should be close to the top of a list somewhere due to the 17 and a half years on dialysis. However I amnot holding my breath about being listed. So much can go wrong when a complicated case is taken to committee. So it goes onward.
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The good Lord only knows transplant wait times. However they did say to have a bag packed because I should be close to the top of a list somewhere due to the 17 and a half years on dialysis. However I amnot holding my breath about being listed. So much can go wrong when a complicated case is taken to committee. So it goes onward.
You should get a trophy for surviving 17.5 years on dialysis! How is your case complicated?
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So much can go wrong when a complicated case is taken to committee. So it goes onward.
I think the "committee" simply decides if you are eligible to be listed in the transplant program. I believe the actual decision to accept and plant an organ will be made by the surgeon and other MDs on the xplant team - but I suppose if you have more than 2 MDs talking it becomes a committee.
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Do you know your antibody level?
Yeah, with all your time for good behavior, your should get transplanted quickly, once they ok you.
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They have not done the major blood work yet due to me needing other consultations.
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Cardiologist report today! Heart levels are all okay and am healed from the catheterizations. He is pleased with my weight loss progress and I recommended this program highly to him. I am okayed to exercise again. Today I am doing the desk bike in intervals. I am pleased.
Next UCLA appointment July 25th.
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Good to hear girl
:cheer: :cheer: :cheer:
Love, luck and strength, Cas
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Cardiologist report today! Heart levels are all okay and am healed from the catheterizations. He is pleased with my weight loss progress and I recommended this program highly to him. I am okayed to exercise again. Today I am doing the desk bike in intervals. I am pleased.
Next UCLA appointment July 25th.
This is great news! It's about time you got good news, seems your hard work and willpower is paying off. Strength seems to be an ability hard to achieve sometimes and greatly appreciated when it is shared.
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Another transplant coordinator phone call. This time for test appointments that should have been made last month not the week before I go to see UCLA doctors.
SO now I have Monday- dialysis 2-9pm, Tuesday- Lung Scan 12:30, Wednesday- Dialysis 2-9pm,Thursday- Bubble Study cardiogram 11 a.m., Saturday- Dialysis 10 a.m., Monday UCLA 2p.m., Tuesday Dialysis10 a.m..
I may go nuts next week.
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Hope they have their act together and will be ready for you and any glitches avoided. Tell them the showgirl must go on! :guitar:
A little Bette Midler...
https://youtu.be/xT-DdBrcVuA
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I empathize with you kitkatz. I've been through the crazy testing too and sometimes it almost feels like they do SO many tests to FIND a reason to turn you DOWN! You get the feeling THEY are paranoid something will go wrong!!
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Tests this week. Geez I hope I passed them all.
Tuesday I did a lung scan. It was interesting and the crew that did it was a delight. I saw my lungs glowing on the scans, too. Cool.
Thursday I completed the bubble test in cardiology. The nurse was pretty rough getting an IV in but she got it the first time.
So now on to Monday's UCLA appointment.
Hopefully they send me back to the transplant committee with an okay from them.
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Some transplant centers do everything they can to find a reason to turn you DOWN! I hope you have a good and compassionate Tx center then you should be fine.
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I just got back from UCLA pulmonary appointment. They have given clearance. Now back tot he transplant team and see what they want and need me to do next.
I will call the coordinator tomorrow.
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:2thumbsup;
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I just got back from UCLA pulmonary appointment. They have given clearance. Now back tot he transplant team and see what they want and need me to do next.
I will call the coordinator tomorrow.
Anything new to report???
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Hoping for smooth, smooth sailing from here on out! :2thumbsup;
Aleta
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Best wishes from me too!
But from personal experience I can say dealing with the Tx team can be like dealing with the devil! Sometimes you get the feeling they are looking for reasons to turn you DOWN!! :banghead; :Kit n Stik;
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My UCLA transplant coordinator takes my case to committee tomorrow! We shall see what happens.
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Oh, I'm all nervous now! I hope you get the bestest news!
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Hope all goes in your favor with the UCLA committee. :thumbup;
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Don't know if it's been 'tomorrow' yet on your end, but how did it go?
Love, Cas
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I wonder what's taking so long? They told me right after the committee meeting because they make a decision at the meeting.
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Well, the committee has not said yes and they did not say no, they said come in and see us about that low BP you have. Let's see what we can see about that, then a decision will be made.
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That's frustrating, but could be worse! Hopefully that will be a quick "fix" to get you to the list!
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Another hoop! But at least you are still in the game. :2thumbsup;
:cuddle;
Aleta
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:flower; Still a maybe, that's ok, keep moving forward Kit!!
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Low BP?? Usually kidney disease results in high BP!
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Hi DGF 'usual' and CKD don't often go together. CKD and D are also completely different. I think I know more people on D with low BP than with high BP.
Kitkatz when are you supposed to come in?
Love, strength, luck and even more patience, Cas
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I just read again that you do 'nocturnal' didn't Desert Rose have that problem and it turned out to be more calcium in the bathwater or dialysate was needed?
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I am already on a high calcium bath while on dialysis. I may have to go back to four hours a shot to bring th eBP up to marginal levels to get that transplant, but am waiting to see what they say
Appointment is September 8, at 2pm.
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It is official my transplant case is closed st UCLA. No transplant for me due to my low bp
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It is official my transplant case is closed st UCLA. No transplant for me due to my low bp
Wow. That sucks! Are they afraid your kidney won't have sufficient blood pressure to function properly or something?? Didn't they give you any advice on how to raise it?
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It is official my transplant case is closed st UCLA. No transplant for me due to my low bp
I feel for you Kitkatz
:grouphug;
Lots of love, Cas
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It is official my transplant case is closed st UCLA. No transplant for me due to my low bp
well that's awful news ???
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It is official my transplant case is closed st UCLA. No transplant for me due to my low bp
I am very sorry kitkatz ... but ... perhaps something can be done to bring your BP up a little?
I keep my fingers crossed and send you my very best wishes,
Kristina. :grouphug;
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I'm so sorry.
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Oh dear, Kitkatz.
I know this is devastating news. Nothing I can say or do will serve to make it any better. I wish it could.
Sending you.... :grouphug; :cuddle; :grouphug; :cuddle;
If you can think of anything that we can do to help, please let us know.
Aleta
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Have you considered Scripps? Okcarol is an expert & she says they're great.
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What? That's it? Is there nothing more to be done?
Gosh, I wish I knew what to say. I'm sorry.
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Kitkatz, I've been following your story here, and I'm just stunned that it seems to end like this. Like some others have asked, I have to wonder if they will reconsider if your BP can be brought up? This just sucks and is awful. You've spent so much effort and time on this process. I'm so sorry.
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Words escape me right now. I don't know if the right words exist for this. I know that if my husband wanted a transplant and was told no I'd be hugging him real tight and telling him how sorry I feel about it and that I'd be there for him in whatever way he needs me to be. Your friends here at ihd are here for you and the group never seems to run out of hugs. You're such a strong and very wise lady, kudos for showing the rest of us that however challenging and tough it can be, life is worth living (bumps and all), simply because as people, WE are worth it.
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Words escape me right now. I don't know if the right words exist for this. I know that if my husband wanted a transplant and was told no I'd be hugging him real tight and telling him how sorry I feel about it and that I'd be there for him in whatever way he needs me to be. Your friends here at ihd are here for you and the group never seems to run out of hugs. You're such a strong and very wise lady, kudos for showing the rest of us that however challenging and tough it can be, life is worth living (bumps and all), simply because as people, WE are worth it.
We're dealing with an inherently EVIL system that oftentimes SEEKS ways to DENY you rather than approve you! I was denied by THREE different centers eventhough I'm PERFECTLY healthy besides the kidney! I FINALLY found a SANE center that realized I was perfectly healthy and a prime candidate for Tx but my body had to suffer through almost half a DECADE on a machine before I FINALLY got my Tx!
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Oh, low BP.... I have low BP too. Who would have thought. I use to take 3 pills for Hi blood Pressure?
I'm so sorry Kit. :pray;
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My hubbys BP would get so low after dialysis he had to have IV fluids put back in before he could go home. Then his Neph started him on Midodrine , he would take 1 pill half way through the dialysis and it was very helpful, works great ! It's a RX that raises BP !
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I have tried Midodrine. All my bP does with midodrine is give me a huge headache and wave at it as it takes a dive.
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Hi Kitkatz I'm just asking cos most times it worked for me. Cayenne pepper. Just a bit on everything you cook (so that it's only just spicy) In lots of articles it says it lowers BP, but it doesn't, it normalizes it (well, it did with me).
:cuddle;
Love, Cas