Our family would like to thank everyone who has sent words of comfort, prayers, contributions and visits. It is hard to express our appreciation for all your kind acts and thoughts during this difficult time.
Please continue to read our blog. We will be posting updates about Ralph's family.
Sunday, August 17, 2008
Sunday, August 3, 2008
Ralph's Passing
It is with great sadness that we inform you of Ralph's passing at about 12:10 am today. Our family was able to be with him to the very last moment. The funeral will be Wednesday, August 6th at 11:00 am in Orem, UT. Here is a link to his obituary.
Friday, August 1, 2008
Emergency Trip to Hospital
Ralph's condition worsened this week. Yesterday, his wife and I made a mad dash to LDS Hospital. Ralph was put in ICU. They had to push several IV's to get Ralph re-hydrated. Later in the evening though, he was enjoying watching the USA/Turkey basketball game.
As of this morning, he is maintaining his own blood pressure but still in a lot of pain. The doctors have scheduled a CT scan today, they are trying to figure out why his abdomen is so painful. We will try to post as often as possible to let you know how he is doing.
As of this morning, he is maintaining his own blood pressure but still in a lot of pain. The doctors have scheduled a CT scan today, they are trying to figure out why his abdomen is so painful. We will try to post as often as possible to let you know how he is doing.
Tuesday, July 29, 2008
Quick Update
Ralph had a physical therapist visit yesterday and provide him with some exercises to do at home, to help build up his strength. Right now he is having difficulty getting himself up and down and walking is not only painful but difficult. A few nights ago he made the move from the main floor to his bedroom upstairs and it took a few people to help. Fortunately his brother is extremely supportive provides all the muscle Ralph needs. He has really given up all his free time to help his brother and I know this is a huge relief to Ralph. Thanks, Dre!
Today a hospital bed was delivered to the house. Hopefully this will aid Ralph in his ability to get up and down, do his exercises and be able to rest comfortably during the day without being stuck in a chair or a bed.
I would give out more of an update but when I got home tonight Ralph was sound asleep.
Today a hospital bed was delivered to the house. Hopefully this will aid Ralph in his ability to get up and down, do his exercises and be able to rest comfortably during the day without being stuck in a chair or a bed.
I would give out more of an update but when I got home tonight Ralph was sound asleep.
Sunday, July 27, 2008
Under Construction
The website may look a little different for the next couple of days. I'm trying to give it a face lift and add a little flare to it, but the changes will come little by little. But don't worry. It will all turn out for the better.
Tuesday, July 22, 2008
Ralph's Birthday
Saturday is Ralph's Birthday. Please send emails (ralphsamyloidosis@gmail.com), cards and letters (address on the right). Let's surprise him!
Monday's Visit to the Hospital
Ralph went up to the hospital on Monday. They took 16 samples of blood, a chest x-ray, and an EKG. They also gave him a tentative calendar for the SCT. I mis-informed you last post concerning the insurance, Ralph only had approval to proceed in the process, not approval for the entire process. That's why it is a 'tentative' calendar. After each step, the hospital will submit approval to the insurance for the next step. When we get the next approval, I'll post the calendar.
Sunday, July 20, 2008
Insurance Approval
Ralph received the official letter from the insurance company on Saturday and the transplant has been approved! Now off to the hospital on Monday for more tests.
Friday, July 11, 2008
Our visit with the Bone Marrow Transplant Team
We visited with the transplant team on Friday, July 11, 2008. We had been told to plan on about 5 hours and they were right. Ralph had his vitals taken, then met for about an hour with Amity, the Physicians Assistant. Amity wanted a history of what has happened and how we got to this point. After we finished Ralph's history, Amity left us and met with Dr. Ford.
We had about a 30 minute break. I was able to get a sandwich for my daughter. Being pregnant, she is hungry 'all' the time. It was a kind of nice to have a little while to just visit with one another.
Dr. Ford, Julie and Amity came back and then we started discussing Ralph's condition. Dr. Ford talked about two different studies and how they apply to Ralph's situation. He reviewed the medical records and Ralph's current status. We were told Ralph's heart has been affected by the Amyloidosis. The exterior has some rigidity and the wall between the ventricles has some thickening. We were hoping there hadn't been any impact to his heart. At this point, we were terrified Dr. Ford was going to tell us Ralph didn't qualify for stem cell transplant (SCT). I think all three of us stopped breathing at this point. Dr. Ford continued, Ralph's heart still is functioning at a normal level. Breath In
Then the good news, Dr. Ford believes Ralph is eligible for SCT. But then Dr. Ford gave a different prognosis then our local doctors. The SCT might only prolong Ralph's life for 3 to 4 years. Even though Dr. Ford shortened the time we had been told previously, we are grateful for everything the doctors are doing to help Ralph.
Now for the process and the timing of the SCT.
1. Get approval from Insurance Company
2. Finish any medical workup which isn't completed
3. Stem cell collection
4. Two week rest, then in to the hospital
5. Chemotherapy
6. Stem cell transplant
7. Release from hospital but Ralph must stay within 30 minutes of the hospital for two to three weeks
8. Home and recovery
9. Three months after transplant, test to measure amyloid protein
We will keep you updated as we reach each step.
We had about a 30 minute break. I was able to get a sandwich for my daughter. Being pregnant, she is hungry 'all' the time. It was a kind of nice to have a little while to just visit with one another.
Dr. Ford, Julie and Amity came back and then we started discussing Ralph's condition. Dr. Ford talked about two different studies and how they apply to Ralph's situation. He reviewed the medical records and Ralph's current status. We were told Ralph's heart has been affected by the Amyloidosis. The exterior has some rigidity and the wall between the ventricles has some thickening. We were hoping there hadn't been any impact to his heart. At this point, we were terrified Dr. Ford was going to tell us Ralph didn't qualify for stem cell transplant (SCT). I think all three of us stopped breathing at this point. Dr. Ford continued, Ralph's heart still is functioning at a normal level. Breath In
Then the good news, Dr. Ford believes Ralph is eligible for SCT. But then Dr. Ford gave a different prognosis then our local doctors. The SCT might only prolong Ralph's life for 3 to 4 years. Even though Dr. Ford shortened the time we had been told previously, we are grateful for everything the doctors are doing to help Ralph.
Now for the process and the timing of the SCT.
1. Get approval from Insurance Company
2. Finish any medical workup which isn't completed
3. Stem cell collection
4. Two week rest, then in to the hospital
5. Chemotherapy
6. Stem cell transplant
7. Release from hospital but Ralph must stay within 30 minutes of the hospital for two to three weeks
8. Home and recovery
9. Three months after transplant, test to measure amyloid protein
We will keep you updated as we reach each step.
Thursday, July 10, 2008
Doctor Visit Today
I saw Ralph today and he told me he had a doctor visit with the Nephrologist. Nothing to note from this visit, but he did get a few more things to help. The doctor gave him some forms so he can have a disabled parking pass (now we will always have celebrity--I mean front row--parking for Ralph) and as Ralph said, "I got bionic legs."
Here is a picture of what they look like:
Here is a picture of what they look like:
Monday, July 7, 2008
How this began
Sometime in February or March, Ralph started having problems with his stomach. He couldn't eat much and was having pain when he ate anything. By May, the problem had become so bad he had lost weight and could barely eat anything. It was nearly impossible for him to eat anything dry, like a sandwich. On May 12th, he went to the doctor.
Ralph's appointment was with the Physician's Assistant. A few blood tests were run and it was decided Ralph had H. Pylori. He was prescribed two antibiotics and by the end of his treatment, he had become much worse. He was now retaining water, fatigued, and the stomach pain was worse than ever. He was eating even less than before and was no way getting enough nutrients; back to see the PA, more tests.
Ralph was now complaining of difficulty breathing when he laid down and there was extreme water retention in his feet and ankles. He went back to the PA again and she ordered a treadmill test to check his heart and an endoscope to see if there was an ulcer.
At this point, Ralph was incredibly sick. The PA finally had to bring in the doctor because Ralph's mother-in-law went with him and forced her to do her job. It was decided that Ralph needed to see a specialist because the tests showed problems with his kidneys. Ralph had an appointment straight away with the specialist, a Nephrologist, and the doctor scheduled a biopsy to determine the type of kidney disease Ralph had. In the meantime, Ralph was getting worse. The doctor felt Ralph had retained about 20 pounds of water in his legs and trunk so he prescribed Ralph a diuretic.
Although Ralph was doing what he was advised, he continued to get worse. Now he was seriously ill and asked if he should go to the Emergency Room. All of his family believed the doctors would admit him if needed so he did not go to the Emergency Room. More days passed; Ralph passed out in the bathroom one night; his fatigued increase and so on and so forth.
At midnight, Friday, June 20th, Ralph was taken to the Emergency Room by his wife. By 9:00 am, Ralph had been admitted to the ICU. He had pneumonia and sepsis and was dangerously dehydrated.
Three days later, Ralph left ICU for a regular hospital room and the doctors said we had to wait for his condition to improve in order to perform the kidney biopsy. Friday, June 27th, they did the kidney biopsy and the results did not show the kidney disease we were all so worried about; the kidney biopsy showed amyloid protein.
On Monday, June 30th, a pathologist did a bone marrow biopsy and on Wednesday, July 2nd, we were told Ralph had amyloidosis. We had no idea what this meant but based on a quick web search, it didn't look good. On Thursday, July 3rd, the doctors told us Ralph needed a stem cell replacement to prolong his life.
Our lives have been forever changed. One friend described it this way, "Your family has been nuked!" and it really feels that way. Ralph can no longer work. His wife is expecting their first child in November (after five years of trying) and is now the family bread winner. We are feeling so overwhelmed we don't even know where to start.
Ralph's appointment was with the Physician's Assistant. A few blood tests were run and it was decided Ralph had H. Pylori. He was prescribed two antibiotics and by the end of his treatment, he had become much worse. He was now retaining water, fatigued, and the stomach pain was worse than ever. He was eating even less than before and was no way getting enough nutrients; back to see the PA, more tests.
Ralph was now complaining of difficulty breathing when he laid down and there was extreme water retention in his feet and ankles. He went back to the PA again and she ordered a treadmill test to check his heart and an endoscope to see if there was an ulcer.
At this point, Ralph was incredibly sick. The PA finally had to bring in the doctor because Ralph's mother-in-law went with him and forced her to do her job. It was decided that Ralph needed to see a specialist because the tests showed problems with his kidneys. Ralph had an appointment straight away with the specialist, a Nephrologist, and the doctor scheduled a biopsy to determine the type of kidney disease Ralph had. In the meantime, Ralph was getting worse. The doctor felt Ralph had retained about 20 pounds of water in his legs and trunk so he prescribed Ralph a diuretic.
Although Ralph was doing what he was advised, he continued to get worse. Now he was seriously ill and asked if he should go to the Emergency Room. All of his family believed the doctors would admit him if needed so he did not go to the Emergency Room. More days passed; Ralph passed out in the bathroom one night; his fatigued increase and so on and so forth.
At midnight, Friday, June 20th, Ralph was taken to the Emergency Room by his wife. By 9:00 am, Ralph had been admitted to the ICU. He had pneumonia and sepsis and was dangerously dehydrated.
Three days later, Ralph left ICU for a regular hospital room and the doctors said we had to wait for his condition to improve in order to perform the kidney biopsy. Friday, June 27th, they did the kidney biopsy and the results did not show the kidney disease we were all so worried about; the kidney biopsy showed amyloid protein.
On Monday, June 30th, a pathologist did a bone marrow biopsy and on Wednesday, July 2nd, we were told Ralph had amyloidosis. We had no idea what this meant but based on a quick web search, it didn't look good. On Thursday, July 3rd, the doctors told us Ralph needed a stem cell replacement to prolong his life.
Our lives have been forever changed. One friend described it this way, "Your family has been nuked!" and it really feels that way. Ralph can no longer work. His wife is expecting their first child in November (after five years of trying) and is now the family bread winner. We are feeling so overwhelmed we don't even know where to start.
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