Transplant coordinator called me

[kitkatz]

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.

[PrimeTimer]

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. 

[kitkatz]

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.

[kitkatz]

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.

[Deanne]

.... 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!

[MooseMom]

Thanks for the update, although I could feel my blood pressure go up as I read it.

[kitkatz]

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.

[willowtreewren]

Onward! 

But what a bummer to expend so much time, energy and money for so little! 

I'm liking the good news, though!

Aleta

[Deanne]

Great news! I hope today's appointment goes as well as yesterday's!

[MooseMom]

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!

[okarol]

  Keep going Kit!

[kitkatz]

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.

[okarol]

Wow I hope all progresses forward! 

[willowtreewren]

Onward, onward.

You can push past this hurdle. 

Aleta

[PrimeTimer]

Wishing you the best outcomes! Keep swinging! 

[kitkatz]

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.

[willowtreewren]

Geeze! Does it never end??

 

[Charlie B53]

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

[Charlie B53]

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.

[kitkatz]

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.

[willowtreewren]

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. 

Aleta

[MooseMom]

How are things going with the CPAP machine?

[kitkatz]

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.

[cassandra]

Wow, good news. Keep us informed when a 'not green' happy face appears in the morning in the mirror

   


Love, Cas

[Vt Big Rig]

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.