 |
| The is the Lake where we live. |
 |
| It's the closest thing to the beach we have! Thankful just to take a walk along the shore! Our only reprieve lately! |
3 weeks ago
Saturday, January 21, 2012
The Beach?
If we had a million dollars?
If we had a million dollars...
We would fly home to be with family.
We are going to miss an important family event this weekend.
Tears
I'm not sure Mr. C's health could take a quick trip home anyway.
So this comforts me that a million dollars probably wouldn't make any difference!
It feels better to whine a bit :)
For what we have... especially for love of family
We are THANKFUL!
We would fly home to be with family.
We are going to miss an important family event this weekend.
Tears
I'm not sure Mr. C's health could take a quick trip home anyway.
So this comforts me that a million dollars probably wouldn't make any difference!
It feels better to whine a bit :)
For what we have... especially for love of family
We are THANKFUL!
Thursday, January 19, 2012
Thankful Thursday: 3 good day's in a row!
We are
CELEBRATING
THREE
GREAT DAYS
in a row!
After the last difficult few weeks
OHhhhhhhhhhh...
This feels SOooooooooooooooo
GOOD!
For this we are THANKFUL!
Mr. Clark has some upcoming changes that will be a MAJOR challenge physically and emotionally to get completely ready for
TRANSPLANT.
a clue: His teeth.
We HOPE and Pray he won't have any complications.
 |
| No more grumpy looks? We will be looking forward to a huge SMILE! |
We'll keep you updated.
Tuesday, January 17, 2012
Thankful Tuesday: A Lil' old Lady and and Lil' old Man!
And on to a NEW WEEK
Things are somewhat better!
Still battling a new infection.
Things are somewhat better!
Still battling a new infection.
Monday we spent the day off as usual in Doctor Appointments. Thankful for business's that are open on a Holiday! Our day was spent first off in Physical Therapy.
No sleeping in!
This is paying off! Mr. Clark is feeling a lot stronger!
and...
We are challenging each other on the tread mill!
Double BONUS!
Then we met with nurse 'Barb'
 |
| Mr. C and Nurse 'Barb' (notice the bribe of protien bars!) |
I love the little pat on the back she gives me.
She makes me feel confident as a caretaker.
For the next month:
A new series of IV IRON twice a week.
And our Nephrologist
Dr. J
who is GREAT.
Except for the fact that his latest remedy is
Keeping Mr. C grounded
Yes, Beware: T.M.I
(Lactolose is NOT his friend right now!)
14lbs weight loss in a matter of 4 hrs. means
Something wasn't right!
14lbs weight loss in a matter of 4 hrs. means
Something wasn't right!
This is the life of a PD (peritoneal dialysis) patient
AND THEN:
On the way out...
We met a lil' Ol' Lady and a Lil Ol' Man
coming into the dialysis center.
Mr. Clark teased the Lil' Ol' Lady for stealing a wheel chair from the facility.
She carefully wheeled it out to get her husband.
She put on the breaks and was struggling to get the foot rests down.
I asked her if she needed help.
And in the STRONG, CONFIDENT voice she said,
"oh no, we are fine, but thank you for asking"
Ask me why this makes me cry?
I immediately seen a 'fast forward' moment.
For one thing, this is EXACTLY what I would say.
(The independent me)
For the second thing.
I had to reflect on her strength.
(at her age)
I know in my heart what their daily routine is.
It takes an enormous amount of energy.
It takes an enormous amount of energy.
Tears and more tears.
And then...
I had to feel THANKFUL
We are YOUNG and have the strength and confidence
to get through this.
Lately our mental strength has been challenged.
I'm definitely not always the STRONG person that I appear.
It's amazing that when I am down Mr. Clark builds me up and I for him.
*It's amazing how spiritual strength and physical strength go hand in hand.
TODAY,
THANKFUL
for meeting the Lil' Ol' Lady and the Lil' Ol' Man yesterday.
We can keep going on with COURAGE
BECAUSE WE ARE ALL STRONG ENOUGH!
BECAUSE WE ARE ALL STRONG ENOUGH!
Tuesday, January 10, 2012
THE BALANCING ACT!
Not everything is as it seems. I try to be courageous and brave but these are the truths of our low of lows. I am NOT always an optimist! Although we pick ourselves up and move on to a better attitude-- its moment to moment!
1- Nights, terrify me. Why is it when it gets dark things are difficult? Mr. Clark THRASHES with restless leg/neuoprathy. Laying down is difficult for him. I'm convinced no med helps him. It just makes him delirious/ numb in his mind but very conscious of his pain! The meds either give him nightmares/hallucinations or cause sleep walking. Two nights ago, he didn't realize he unhooked his dialysis machine. at 2:00 am we started the whole set up over. One hour later I woke up with the realization he was attempting to do it again. After getting him back in bed, I crashed. Only to a loud thud a few minutes later. Mr. Clark had got up and somehow lost his balance and fell into our clothes closet. This is why I dislike nights! This night was a mild night. (After this experience he's decided not to take those meds anymore. ) If I went into detail about others Mr. Clark would be sad I shared them. The result of this night- Once again peritonitis and we start the routine of antibiotics in his solution that must be a mid day exchange. This means dialysis day and night.
While this post is already L-O-N-G...
This is one of our l-o-n-g nights for the journal,
In one of Mr. C's thrashing moments he stretch his line too far, popping off the metal screw that is his connection to his insides(yes his gut). Without this screw his hose would run back into his body only to be retrieved in surgery. Needless to say we panicked! His dialysis solution (inside his gut) was spraying everywhere. Clark grabbed his 3 inch line and held it. I found an old clamp from from a solution line on got it on the hose. Then we called for help. Nurse Barb answered the emergency line. You can imagine the relief we had. Calmly she told me how to unscrew the old connection, sterilize it and try to stretch the 1/8" line over the connection and screw it back together. It was intense, but I did it. She then told me to get pliers and tighten it. It worked. We had to get on emergency antibiotics through the solution immediately. My favorite part of this adventure is that when we went into the dialysis center to have them do it right??? The nurse was amazed. She didn't have to do anything. I had done everything right and secure. A little more confidence boost. We survived yet another crisis!
2- Just trying to keep all of his stats in line is a total guessing game. If his blood pressure is high, we do a higher solution of dialysis. If he is retaining water or if he has weight gain we use a higher solution. If we use a higher solution it messes with his blood sugar giving him sugar highs. If his blood sugar gets too high then his dialysis isn't effective. Using a higher solution because of High Blood pressure sometimes bringing it too low. If you know anything about too low bp. There is not much you can do. Oh wait, you can add salt to his diet which will add water, which will up his weight. Which induces high blood pressure etc and the vicious cycle starts all over again! In this case, he can't be left alone and its important to watch him to make sure he doesn't pass out. We have gotten courage from Mr. Clark's team of Doctors. They support us and are reassuring that we are doing everything we can and doing it the very best we can. It is still scary!
3- Food is our enemy/life saver!!!!!!!! It's like balancing the dialysis fluid. It's all about BALANCE. And it is another battle we fight. What to eat and what not to eat. Strict, no phosphorus but push the protein-Grrrrrrr
4- Balance? Oh Yes, randomly falling. I will look behind me only to see him --S-P-L-A-T on the ground and then I wonder how I'm going to pick him up. Or teetering through the grocery store and people staring at us like I'm helping a drunkard!
5- Keeping Mr. Clark's spirits up. This is his Gethsemane. I don't know how I would endure it if I were in the same position. I try to put myself in his shoes and then... I really admire his attitude and optimism!
6- Always feeling that something could happen at any given moment is exhausting. It is a 24 hr. feeling. It is our battle. I know that our time together may be brief. So it is a constant time of keeping courage. But honestly we both have our moments of melt downs.
7- Knowing when and when not to go to the hospital. We don't take chances any more. It's gotten so routine that we don't often tell anyone we've been there! This is our life now.
8- When others avoid you because "we always have issues" Or they ask you but their expression states they don't really want to hear your answer. Its just easier to not get involved. You see who is truly charitable/compassionate and yes, who are your true friends. This sounds harsh. I'm the same way. The best I can do is focus on our own circumstances, so I understand. So it's all a BALANCE
On a positive note: I have gained confidence that I CAN do anything that is required.
Yet again, It's all about BALANCE~
1- Nights, terrify me. Why is it when it gets dark things are difficult? Mr. Clark THRASHES with restless leg/neuoprathy. Laying down is difficult for him. I'm convinced no med helps him. It just makes him delirious/ numb in his mind but very conscious of his pain! The meds either give him nightmares/hallucinations or cause sleep walking. Two nights ago, he didn't realize he unhooked his dialysis machine. at 2:00 am we started the whole set up over. One hour later I woke up with the realization he was attempting to do it again. After getting him back in bed, I crashed. Only to a loud thud a few minutes later. Mr. Clark had got up and somehow lost his balance and fell into our clothes closet. This is why I dislike nights! This night was a mild night. (After this experience he's decided not to take those meds anymore. ) If I went into detail about others Mr. Clark would be sad I shared them. The result of this night- Once again peritonitis and we start the routine of antibiotics in his solution that must be a mid day exchange. This means dialysis day and night.
While this post is already L-O-N-G...
This is one of our l-o-n-g nights for the journal,
In one of Mr. C's thrashing moments he stretch his line too far, popping off the metal screw that is his connection to his insides(yes his gut). Without this screw his hose would run back into his body only to be retrieved in surgery. Needless to say we panicked! His dialysis solution (inside his gut) was spraying everywhere. Clark grabbed his 3 inch line and held it. I found an old clamp from from a solution line on got it on the hose. Then we called for help. Nurse Barb answered the emergency line. You can imagine the relief we had. Calmly she told me how to unscrew the old connection, sterilize it and try to stretch the 1/8" line over the connection and screw it back together. It was intense, but I did it. She then told me to get pliers and tighten it. It worked. We had to get on emergency antibiotics through the solution immediately. My favorite part of this adventure is that when we went into the dialysis center to have them do it right??? The nurse was amazed. She didn't have to do anything. I had done everything right and secure. A little more confidence boost. We survived yet another crisis!
2- Just trying to keep all of his stats in line is a total guessing game. If his blood pressure is high, we do a higher solution of dialysis. If he is retaining water or if he has weight gain we use a higher solution. If we use a higher solution it messes with his blood sugar giving him sugar highs. If his blood sugar gets too high then his dialysis isn't effective. Using a higher solution because of High Blood pressure sometimes bringing it too low. If you know anything about too low bp. There is not much you can do. Oh wait, you can add salt to his diet which will add water, which will up his weight. Which induces high blood pressure etc and the vicious cycle starts all over again! In this case, he can't be left alone and its important to watch him to make sure he doesn't pass out. We have gotten courage from Mr. Clark's team of Doctors. They support us and are reassuring that we are doing everything we can and doing it the very best we can. It is still scary!
3- Food is our enemy/life saver!!!!!!!! It's like balancing the dialysis fluid. It's all about BALANCE. And it is another battle we fight. What to eat and what not to eat. Strict, no phosphorus but push the protein-Grrrrrrr
4- Balance? Oh Yes, randomly falling. I will look behind me only to see him --S-P-L-A-T on the ground and then I wonder how I'm going to pick him up. Or teetering through the grocery store and people staring at us like I'm helping a drunkard!
5- Keeping Mr. Clark's spirits up. This is his Gethsemane. I don't know how I would endure it if I were in the same position. I try to put myself in his shoes and then... I really admire his attitude and optimism!
6- Always feeling that something could happen at any given moment is exhausting. It is a 24 hr. feeling. It is our battle. I know that our time together may be brief. So it is a constant time of keeping courage. But honestly we both have our moments of melt downs.
7- Knowing when and when not to go to the hospital. We don't take chances any more. It's gotten so routine that we don't often tell anyone we've been there! This is our life now.
8- When others avoid you because "we always have issues" Or they ask you but their expression states they don't really want to hear your answer. Its just easier to not get involved. You see who is truly charitable/compassionate and yes, who are your true friends. This sounds harsh. I'm the same way. The best I can do is focus on our own circumstances, so I understand. So it's all a BALANCE
On a positive note: I have gained confidence that I CAN do anything that is required.
Yet again, It's all about BALANCE~
Saturday, January 7, 2012
Update: It's all about Our QUALITY of LIFE
 |
| Dallas, Texas |
Our trip to Baylor University Medical in Dallas Texas for an evaluation was a little disheartening. We obtained loads and loads of information about the good and *bad of a pancreas/kidney transplant.
THE BAD NEWS: We do not qualify for a pancreas at Baylor.
For a pancreas:
1- You must be under the age of 50 --- (ahhh.... too bad we can't turn back the age clock).
The reason? It's all about how an older body (and a body already very sick) can handle the surgery. A pancreas is very fragile to transport and implant. The risks of the surgery ( for a person over 50) outweigh the benefit.
:(
2- You MUST be under *weight because the anti-rejection meds add weight of 50 to 100 lbs.
(we already new this, but the criteria for pancreas- weight etc. is even more strict than a kidney)
We still qualify for a Kidney at Baylor -- (if he stays in the weight range) This also includes being listed at Baylor in Dallas and Baylor in Fort Worth with is 2 different donor pools. So we have the possibility of listing in 3 places.
The GOOD NEWS: We are listed at Kansas University Med for a Kidney and we have started the monthly blood work that is required to stay listed.
So we are changing up our attitude about a pancreas. In a perfect situation, our dream would be not to have diabetes anymore. BUT... We can gear up for a kidney only and improve Mr. Clark's QUALITY of LIFE!
For this we are THANKFUL
For the miracle that our Son, Tyrel and his wife could be with us during this emotional roller coaster. Thank you to the *Fox family for their Christmas Surprise! MAKES US EVEN MORE THANKFUL!
 |
| Our way of Travel! (we thought it was a little funny that he rode in the back and I rode in the front~ typical 'old' people!) Dallas Cowboy Dome in the Background! We had a 'designated driver', Our son Tyrel! |
 |
| Our Blessing of the trip! Tyrel and Danielle Standing in front of the Rangers Stadium. |
 |
| At the Oklahoma Memorial. |
Subscribe to:
Posts (Atom)
