Just heard back from the tx center telling me to eat a lite dinner and then nothing afterwards. I am a match with the donor but I am only the backup. The primary candidate was a perfect match too and will probably get the organs however it wouldn't be the first time if they brought the primary candidate in and then decided against them getting the organs.
A final decision won't be made until much later tonight, as they weren't even scheduled to bring the donor into the operating room until 8:00pm.
And so the high anxiety continues.
I'll let you know when I know.
Thanks.
Monday, February 27, 2012
A bit of that déjà vu feeling.....
At 7:30 this morning I got a call from Pinnacle once again telling me I was a backup prospect for a SKP transplant.
They told me they had plenty of my blood and asked for my permission to do the cross matching.
I was told that the organs were from an 18 year old donor and that the lead surgeon thought these would be great organs for me. I was also told that I was in the first choice slot at Pinnacle, however there were other prospective recipients at two other centers that were going to be given first consideration.
And so now, it's once again, a waiting game. Once again I'm to "just go about my day just like normal".
Right.
That's it for now but I'll keep you posted.
Until then ....say a prayer for the family that lost an 18 yr old.
Thanks for checking in.
They told me they had plenty of my blood and asked for my permission to do the cross matching.
I was told that the organs were from an 18 year old donor and that the lead surgeon thought these would be great organs for me. I was also told that I was in the first choice slot at Pinnacle, however there were other prospective recipients at two other centers that were going to be given first consideration.
And so now, it's once again, a waiting game. Once again I'm to "just go about my day just like normal".
Right.
That's it for now but I'll keep you posted.
Until then ....say a prayer for the family that lost an 18 yr old.
Thanks for checking in.
Saturday, February 25, 2012
No news is good news so here's the news.....
I had my appointment with the nephrologist on Thursday and received word that my GFR is now 14.
For those of you that just tuned in - that's not good. I am officially "underwater" now as when you hit the GFR 15 mark they want you to start dialysis. Ugh.
Speaking of water,...in some kind of strange paradox that would surely interest Rod Serling, it is winter and my hands have been excessively dry this year and yet evidently my legs and feet aren't. They are swollen with water. A couple extra pounds of water according to the scale at the doctor's.
This swelling is really noticeable when trying to put on shoes and with things like deep knee bends.
And once again - blame the kidneys.
They have given me a diuretic to help get rid of some of the water (water that they tell me to drink copious amounts of) but only in very small doses as the diuretics are very hard on.....yeah....you guessed it.... the kidneys.
There are a few other hallmarks of the disease at this stage but I'll spare you those details.
It's all one big plate of frustration with a side dish of aggravation and a cup of depression to go.
The doctor wants me to get another boatload of bloodwork drawn and he wants to see me in a month (rather than the usual 3 months).
Kevin and Glenn - no worries - heavy legs make the pedals go 'round.
I'll keep you all posted.
Thanks for checking in here.
For those of you that just tuned in - that's not good. I am officially "underwater" now as when you hit the GFR 15 mark they want you to start dialysis. Ugh.
Speaking of water,...in some kind of strange paradox that would surely interest Rod Serling, it is winter and my hands have been excessively dry this year and yet evidently my legs and feet aren't. They are swollen with water. A couple extra pounds of water according to the scale at the doctor's.
This swelling is really noticeable when trying to put on shoes and with things like deep knee bends.
And once again - blame the kidneys.
They have given me a diuretic to help get rid of some of the water (water that they tell me to drink copious amounts of) but only in very small doses as the diuretics are very hard on.....yeah....you guessed it.... the kidneys.
There are a few other hallmarks of the disease at this stage but I'll spare you those details.
It's all one big plate of frustration with a side dish of aggravation and a cup of depression to go.
The doctor wants me to get another boatload of bloodwork drawn and he wants to see me in a month (rather than the usual 3 months).
Kevin and Glenn - no worries - heavy legs make the pedals go 'round.
I'll keep you all posted.
Thanks for checking in here.
Thursday, February 9, 2012
Blessings...
Through what can only be explained as a cumulative effect of various blessings I am now back with credible health insurance.
I went to the corporate offices of Highmark and after an hour long meeting found a plan that I hope to live with for now. After doing this, I informed the tx center about my new coverage and explained that although I understood their position, I was really rather perturbed at how they handled the whole thing. I simply said that if I am straight up with them, then I expect no less in return.
So after considerable badgering with them we've come to détente.
Tip of The Day: If you don't have health insurance - don't dare get sick.
If you are fortunate enough to have health insurance - thank your lucky scars and do whatever you need to make sure you keep it.
I went to the corporate offices of Highmark and after an hour long meeting found a plan that I hope to live with for now. After doing this, I informed the tx center about my new coverage and explained that although I understood their position, I was really rather perturbed at how they handled the whole thing. I simply said that if I am straight up with them, then I expect no less in return.
So after considerable badgering with them we've come to détente.
Tip of The Day: If you don't have health insurance - don't dare get sick.
If you are fortunate enough to have health insurance - thank your lucky scars and do whatever you need to make sure you keep it.
Wednesday, January 25, 2012
it goes....it goes....it goes....like this....
No health insurance means no way of supporting a transplant - before, during, or afterwards and so I was told this morning that I am currently in tx limbo.
Sign me...
Desperately Seeking
Sign me...
Desperately Seeking
Tuesday, January 3, 2012
Close but no cigar.......
Just finally heard back from the people at Pinnacle and found out that I was a perfect match for the organs......but so was the person that was ahead of me on the transplant list.
That person received the SKP transplant and I wish them the absolute best.
It's very cold, but sunny here today and at this juncture I can only imagine waking up on a beautiful morning like this with the firm belief that from this day forward you are going to get better....and feel better.
That's my hope for the person who received these organs.
That's the hope that I continue to hold onto.
Thanks for checking in.
That person received the SKP transplant and I wish them the absolute best.
It's very cold, but sunny here today and at this juncture I can only imagine waking up on a beautiful morning like this with the firm belief that from this day forward you are going to get better....and feel better.
That's my hope for the person who received these organs.
That's the hope that I continue to hold onto.
Thanks for checking in.
Monday, January 2, 2012
A New Year.....and here we go....
Just got a call from the tx center and they are currently cross matching my blood with a potential donor so once again I am waiting in the wings. Told to just go about my day and they will get back to me.
However, every silver lining has a touch of gray.....I was dutifully advised that these organs are from what is termed a "high risk donor" but I signed a form in the past saying that I would want to be considered for such organs after being advised as to what determined the high risk.
At this point in my life, I am well aware that beggars can't be choosers and so I'm throwing my hat into the ring and we'll see how it goes.
That's all for now.
I'll keep you posted.
However, every silver lining has a touch of gray.....I was dutifully advised that these organs are from what is termed a "high risk donor" but I signed a form in the past saying that I would want to be considered for such organs after being advised as to what determined the high risk.
At this point in my life, I am well aware that beggars can't be choosers and so I'm throwing my hat into the ring and we'll see how it goes.
That's all for now.
I'll keep you posted.
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