You can't appreciate life unless you look back - I accept that - I used to think that looking back was a way of making an excuse for not looking (moving) forward.
As I sit here, the night before Thanksgiving, waiting for the official day of the holiday season to happen.....I am well aware of how thankful I am this Thanksgiving.
I am thankful for Ron. I hope we have many more Thanksgivings together.
I am thankful for our family.....loving thankfulness for our family as it grows and blooms.....our children and beautiful grandchildren......and perhaps one day.....great grandchildren.
I'm ready to move forward, and with every milestone: anniversaries, birthdays, holidays, vacations, quiet moments together - I'll try harder - to stop and 'be in that moment'.
We are most thankful for Ron's donor; although, I'm sure we'll never meet, I hope somehow, somewhere, this amazing family will feel our love. We are thankful for their gift.
Much love to all!
Thursday, December 1, 2011
Saturday, August 13, 2011
Happy Anniversary to My Husband
Ron and I were married 19 years ago today. We dated for 6 weeks and married at the courthouse one afternoon - Ron and I, and Libby (our little flower girl). We had dinner at the Red Lobster and brought home strawberry cheesecake for dessert.
It seems like yesterday and at the same time (after all we've been through) it seems like 100 years ago.
This morning Ron surprised me with flowers, candy and McDonalds for breakfast. It would have been a very different day if he hadn't had the liver transplant just 6 months ago.
So today, as we celebrate our 19th wedding anniversary, we will continue to honor the donor - he or she is with us everyday.
Happy Anniversary Ron, I love you.
Pam
It seems like yesterday and at the same time (after all we've been through) it seems like 100 years ago.
This morning Ron surprised me with flowers, candy and McDonalds for breakfast. It would have been a very different day if he hadn't had the liver transplant just 6 months ago.
So today, as we celebrate our 19th wedding anniversary, we will continue to honor the donor - he or she is with us everyday.
Happy Anniversary Ron, I love you.
Pam
Wednesday, August 3, 2011
Six Month Milestone
We've been talking about how lucky we are. Six months ago (at this very moment) we were sitting in the waiting room and Ron was receiving his liver in surgery.
We know of so many people waiting for transplants, and some with End Stage Liver Disease (ESLD) who won't ever qualify for a transplant.
We rejoice in being given the chance to continue our lives together.....and on this day, we honor the donor.
There are so many precious memories we've made since Ron's transplant.
I won't say sometimes I didn't think we wouldn't make it through the changes in medications, mood swings and snarkiness.
We found our way through the illness, challenged through the transplant, and out the other side with hope.
Ron is well - the crazy symptoms have left - he's working, helping our grandson with soccer and enjoying the family.
Many memories and hopefully many more.
Thank you for your love and support.
Thursday, July 7, 2011
We may have figured it out!
Ron has been plagued with several odd conditions: night sweats, weight loss, fever, over all weakness and fatigued.
We've been told the problems are side effects from the anti-rejection drug Rapamune; and we're living with that explanation.
We spent so much time (years) dealing with the Hep C, ESLD (end stage liver disease); we are ready to get on with our life. We want normal and I'm going to do all I can to make that happen.
So we're spending a week on Tybee Island (off the coast of GA.) very soon. We can't wait. This time last year, we thought it could be our last visit together; and now, with a new liver, 5 months post transplant, we'll spend another summer at the beach.
There's a gorgeous sunset every night - I have our quilt and our favorite spot - and we'll sit and watch those sunsets together.
We've been told the problems are side effects from the anti-rejection drug Rapamune; and we're living with that explanation.
We spent so much time (years) dealing with the Hep C, ESLD (end stage liver disease); we are ready to get on with our life. We want normal and I'm going to do all I can to make that happen.
So we're spending a week on Tybee Island (off the coast of GA.) very soon. We can't wait. This time last year, we thought it could be our last visit together; and now, with a new liver, 5 months post transplant, we'll spend another summer at the beach.
There's a gorgeous sunset every night - I have our quilt and our favorite spot - and we'll sit and watch those sunsets together.
Thursday, June 23, 2011
Cervical Injections and Fevers
CERVICAL INJECTION
Ron has had problems with his neck and shoulders over numerous months; after a visit to his bone and joint physician, they decided to try cervical injections (makes me kinda' sick thinking about it).
A couple of weeks ago (after wonderful mind altering drugs) Ron received cervical injections (eeeehhhh); he spent the day completely oblivious to the world - and his blood sugar went totally out of control - over 500. The following day was no different - sleeping and high blood sugar. Finally on the second day after surgery he felt a little more like himself.
A follow-up visit (which was a waste of co-pay) the doctor decided Ron wasn't a candidate for the additional two injections (we had already decided Ron wasn't having any more injections) due to high blood sugar (duh).
FEVER
But the craziest thing has been happening to Ron over the past month - fevers - not everyday or every other day - low grade - and over 101. The doctors aren't sure what is happening. Ron has an appointment to see a doctor in the transplant clinic tomorrow.
I'm not a doctor - but I'm wondering if the Hep C has begun attacking the new liver and the body is trying to fight the infection.
I'll update after the appointment tomorrow.
Ron has had problems with his neck and shoulders over numerous months; after a visit to his bone and joint physician, they decided to try cervical injections (makes me kinda' sick thinking about it).
A couple of weeks ago (after wonderful mind altering drugs) Ron received cervical injections (eeeehhhh); he spent the day completely oblivious to the world - and his blood sugar went totally out of control - over 500. The following day was no different - sleeping and high blood sugar. Finally on the second day after surgery he felt a little more like himself.
A follow-up visit (which was a waste of co-pay) the doctor decided Ron wasn't a candidate for the additional two injections (we had already decided Ron wasn't having any more injections) due to high blood sugar (duh).
FEVER
But the craziest thing has been happening to Ron over the past month - fevers - not everyday or every other day - low grade - and over 101. The doctors aren't sure what is happening. Ron has an appointment to see a doctor in the transplant clinic tomorrow.
I'm not a doctor - but I'm wondering if the Hep C has begun attacking the new liver and the body is trying to fight the infection.
I'll update after the appointment tomorrow.
Tuesday, June 7, 2011
Negative
Caroline called today (transplant coordinator) to say that Ron's blood work came back normal - NO CMV! That's great! The ulcer cultures are still out - but she suspects they will come back normal as well.
She is concerned about Ron not feeling well - and his extreme weight loss. The clinic has a meeting every Wednesday to go over patients considered for transplant, and patients with complications - she requested Ron's name be submitted for discussion - so the doctors can put their heads together - to see if they can come up with what might be going on with Ron.
Caroline said she would call us tomorrow with any news.
She is concerned about Ron not feeling well - and his extreme weight loss. The clinic has a meeting every Wednesday to go over patients considered for transplant, and patients with complications - she requested Ron's name be submitted for discussion - so the doctors can put their heads together - to see if they can come up with what might be going on with Ron.
Caroline said she would call us tomorrow with any news.
Friday, June 3, 2011
Hmmmm.....still don't know for sure
Ron had an appointment with the transplant team today; he's been feeling, weak, fatigued and sick to his stomach. He has ulcers in his mouth - making it very difficult to eat, and he's lost 13lbs in 2 weeks.
We have 'transplant' friends, Jerry and Chandra (Jerry received his new liver 5 weeks ago) and Jerry is in the hospital in Cincinnati - with blood clots and being tested for the CMV virus. (Jerry's a little better this evening and hopefully they'll be going home Monday).
I never heard of the CMV virus until Chandra mentioned it yesterday. So of course, I Googled it...........
When Ron went to the clinic today - I asked that he be tested for the CMV virus. So what is CMV? Caroline at the transplant clinic explained it this way: the CMV virus is in the Herpes virus family; 80% of the population have been exposed to the virus. Ron was tested prior to transplant and he was one of the 20% of the population which never has been exposed. But word came today, the donor had been........meaning once the new liver was transplanted, the virus was introduced.
Healthy individuals exposed to the CMV virus usually aren't affected at all, but someone with a compromised immune system (transplant patients taking anti-rejection drugs) - well, it can be serious.
Post transplant the patient is given a medication, Valcyte, for the first 6 months, which usually prevents the CMV virus. Ron was tested for the CMV virus today - we'll hear something first of the week.
In the meantime, Ron's back on Valcyte for 3 months. His liver enzymes look great. His kidney function is high - meaning he's dehydrated.....we're upping his fluid intake to 2-2.5 ltrs daily. Because of the ulcers in his mouth (unsure if it's a side effect from the Rapamune or caused by the CMV virus), a culture was taken, and he's 'swishing' with an anti-fungal rinse. His Rappamune levels are high - so they are lowering the dose from 5 a day to 4 daily.
Caroline will call us first of the week.
We have 'transplant' friends, Jerry and Chandra (Jerry received his new liver 5 weeks ago) and Jerry is in the hospital in Cincinnati - with blood clots and being tested for the CMV virus. (Jerry's a little better this evening and hopefully they'll be going home Monday).
I never heard of the CMV virus until Chandra mentioned it yesterday. So of course, I Googled it...........
When Ron went to the clinic today - I asked that he be tested for the CMV virus. So what is CMV? Caroline at the transplant clinic explained it this way: the CMV virus is in the Herpes virus family; 80% of the population have been exposed to the virus. Ron was tested prior to transplant and he was one of the 20% of the population which never has been exposed. But word came today, the donor had been........meaning once the new liver was transplanted, the virus was introduced.
Healthy individuals exposed to the CMV virus usually aren't affected at all, but someone with a compromised immune system (transplant patients taking anti-rejection drugs) - well, it can be serious.
Post transplant the patient is given a medication, Valcyte, for the first 6 months, which usually prevents the CMV virus. Ron was tested for the CMV virus today - we'll hear something first of the week.
In the meantime, Ron's back on Valcyte for 3 months. His liver enzymes look great. His kidney function is high - meaning he's dehydrated.....we're upping his fluid intake to 2-2.5 ltrs daily. Because of the ulcers in his mouth (unsure if it's a side effect from the Rapamune or caused by the CMV virus), a culture was taken, and he's 'swishing' with an anti-fungal rinse. His Rappamune levels are high - so they are lowering the dose from 5 a day to 4 daily.
Caroline will call us first of the week.
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