It's a Saturday and it's a quiet day. Some friends came for dinner which was the highlight of the day. Tomorrow we head to the lake to visit my brother-in-law and sister-in-law. The weather is supposed to be pretty good for a change.
The only anticipated problem will be traffic problem as it is race weekend in New Hampshire. The NASCAR race this week takes place in Loudon which means that traffic should be horrible when we start to make our way back home. With seating capacity of almost 100,000 people it creates a lot of traffic.
I'm still doing fine healthwise and see no side effects(yet) from having reduced my prograf dosage. Of course, it has only been 3 full days but it is a good sign(I think).
I do want to say that in the process of changing some ceiling tiles I did manage to scratch myself a couple of times. Both of these have healed rather well which indicates to me that my white blood cells must be doing their job. So I think that we're making great headway here.
I really don't have too much more to say as nothing else of any import happened today.
Once again as Sunday rolls around, I will miss going to church...
Bob
June 26, 2009 11:20 PM
I'm still hanging in there!
It was another quiet day. Did a little work around the house. Every day I feel OK. But, I have to admit that some days I feel a little better than others. Usually, it's my stomach that might not feel completely up to snuff. It's never impacted my eating at all. But, on those days, I go a little easier. Today was not like that - everything was just great!
I got a phone call from the long term disability company asking about my status. The way that the woman was asking the questions, it seemed as though she was trying to catch me in a lie. She wanted to know everything about my doctor and she kept pushing me about my daily activities - asking if I was driving, going shopping, etc. I guess that I was convincing when I said that I was not supposed to be in crowds so that shopping, movies, restaurants, church, work, etc. were all currently beyond my reach. At that point she seemed to give up and said that she would call in three months. Do they really think that I am making all this up? I found it to be a little insulting.
It does get frustrating at times but I know that I am really not ready to tackle the world yet. I have to build up my strength and stamina.
But, in time, it will all come back...
Bob
It was another quiet day. Did a little work around the house. Every day I feel OK. But, I have to admit that some days I feel a little better than others. Usually, it's my stomach that might not feel completely up to snuff. It's never impacted my eating at all. But, on those days, I go a little easier. Today was not like that - everything was just great!
I got a phone call from the long term disability company asking about my status. The way that the woman was asking the questions, it seemed as though she was trying to catch me in a lie. She wanted to know everything about my doctor and she kept pushing me about my daily activities - asking if I was driving, going shopping, etc. I guess that I was convincing when I said that I was not supposed to be in crowds so that shopping, movies, restaurants, church, work, etc. were all currently beyond my reach. At that point she seemed to give up and said that she would call in three months. Do they really think that I am making all this up? I found it to be a little insulting.
It does get frustrating at times but I know that I am really not ready to tackle the world yet. I have to build up my strength and stamina.
But, in time, it will all come back...
Bob
June 25, 2009 10:45 PM
A very quiet day. But one of my granddaughters spent the day with us. She went shopping with my wife and attended her knitting group this afternoon. But we did get a chance to play games and it was fun.
I am now trying to get a prescription filled by mail with my on-line prescription company. Today I sent the required information and prescription to them. Now we'll find out all of the things that I did wrong and the 17 reasons why they can't fill the prescription and why I'll have to get another one and try again. I'm just so negative! Or, should I call it being realistic?
No real medical news to report. We'll just have to watch closely over the next few weeks to see how, or if, graft vs host disease manifests itself in any way now that one of my anti-rejection drugs has been reduced once again.
It was a good day...
Bob
I am now trying to get a prescription filled by mail with my on-line prescription company. Today I sent the required information and prescription to them. Now we'll find out all of the things that I did wrong and the 17 reasons why they can't fill the prescription and why I'll have to get another one and try again. I'm just so negative! Or, should I call it being realistic?
No real medical news to report. We'll just have to watch closely over the next few weeks to see how, or if, graft vs host disease manifests itself in any way now that one of my anti-rejection drugs has been reduced once again.
It was a good day...
Bob
June 24,2009 10:45 PM
Time for the first medical update in a month!
It was somewhat of an adventure at the hematology lab as they claimed that they could not draw my blood because they did not have some codes for some of the tests that the doctor had ordered. It makes no sense to me and it didn't make any sense to the doctor either as he did not ask for anything that had never been done before. In any case, it took over 45 minutes before they finally took me in the lab. And when they did - did they ever make it count! They took 20 vials! I don't know what the doctor had ordered but it was the 2nd most number of vials that I have ever had taken at one time.
When we finally saw the doctor, he looked at my counts and proclaimed them to be fine. This resulted in thecutting of one of my immuno-suppresents for 1.5 mg twice a day down to 1 mg. If all goes well in July that will be further cut to .5 and I'll be off of it by the end of August. At that point the other drug will be cut from 2 mg once a day to 1 for the month of September and, by October 1, I should be off of them! That will be super! But, I know that I am getting a little ahead of myself. I just have to slow down and take it a day at a time. Impatience is no virtue!
He did look in my mouth and he said that he noticed a little lace like growth that seemed to turn my cheeks from red to a pinkish color. This he claimed was a minor manifestation of graft vs host disease. He then asked if I felt any sensitivity in my mouth to acidic food and when I said no he then said that there was really nothing to be concerned about here.
I know that I am doing well because we have connected somewhat with a fellow who had his transplant about 10 days before mine and he is on a two week interval between visits. So, obviously, I am progressing better than he is currently doing. But, the weaning process is no cakewalk so we do have to be conscious of everything that is going on.
Boy, it's easy to write these entries on the day that you visit the clinic - there's lots to say. Because of the test code issue, everything was delayed somewhat this morning and we didn't get to leave until quarter to nine. What a bummer! But, it was nice to be able to touch base once again with some of the staff and catch up on a few things. Of course, their main concern is my health and appearance and they commented on how much healthier I looked from the last month. I guess that it must be true as one of my daughters had a picture that was taken shortly after the transplant and even though, at the time, I thought I looked pretty good - I had that cancer patient look about me. Somewhat wan and pale looking. When you look in the mirror, you see what you want to see and not what's actually there.
The next appointment is July 29th - 5 weeks hence! So not much medical news to report until that time unless something totally unexpected happens.
I've been more than longwinded, so I'll come to a halt here...
Bob
It was somewhat of an adventure at the hematology lab as they claimed that they could not draw my blood because they did not have some codes for some of the tests that the doctor had ordered. It makes no sense to me and it didn't make any sense to the doctor either as he did not ask for anything that had never been done before. In any case, it took over 45 minutes before they finally took me in the lab. And when they did - did they ever make it count! They took 20 vials! I don't know what the doctor had ordered but it was the 2nd most number of vials that I have ever had taken at one time.
When we finally saw the doctor, he looked at my counts and proclaimed them to be fine. This resulted in thecutting of one of my immuno-suppresents for 1.5 mg twice a day down to 1 mg. If all goes well in July that will be further cut to .5 and I'll be off of it by the end of August. At that point the other drug will be cut from 2 mg once a day to 1 for the month of September and, by October 1, I should be off of them! That will be super! But, I know that I am getting a little ahead of myself. I just have to slow down and take it a day at a time. Impatience is no virtue!
He did look in my mouth and he said that he noticed a little lace like growth that seemed to turn my cheeks from red to a pinkish color. This he claimed was a minor manifestation of graft vs host disease. He then asked if I felt any sensitivity in my mouth to acidic food and when I said no he then said that there was really nothing to be concerned about here.
I know that I am doing well because we have connected somewhat with a fellow who had his transplant about 10 days before mine and he is on a two week interval between visits. So, obviously, I am progressing better than he is currently doing. But, the weaning process is no cakewalk so we do have to be conscious of everything that is going on.
Boy, it's easy to write these entries on the day that you visit the clinic - there's lots to say. Because of the test code issue, everything was delayed somewhat this morning and we didn't get to leave until quarter to nine. What a bummer! But, it was nice to be able to touch base once again with some of the staff and catch up on a few things. Of course, their main concern is my health and appearance and they commented on how much healthier I looked from the last month. I guess that it must be true as one of my daughters had a picture that was taken shortly after the transplant and even though, at the time, I thought I looked pretty good - I had that cancer patient look about me. Somewhat wan and pale looking. When you look in the mirror, you see what you want to see and not what's actually there.
The next appointment is July 29th - 5 weeks hence! So not much medical news to report until that time unless something totally unexpected happens.
I've been more than longwinded, so I'll come to a halt here...
Bob
June 23, 2009 10:20 PM
It was a nice day in that our deacon(the one recovering from leukemia) called and stopped by to serve communion to my wife and me. We are rapidly becoming closer. It's strange how God sometimes works to bring people together.
I did work some on a project so that was a positive for the day as well. And my transformer arrived in the mail so I have my monitor back again. I still cannot imagine why it went especially given the fact that it's plugged into a surge protected outlet. Oh well!
But I can't get it out of my mind that tomorrow it's back to the clinic. It felt so good not having to go all those Wednesdays. But, I guess that it's about time to get an update as to how well I am doing and see what the immediate future may bring.
All the celebrating has come to an end for a while - at least for events. There is always cause for celebrating everyday as my progress has been so good.
So, tomorrow it's up at 5 AM but we should be back around 9.
Slowly but surely I advance forward...
Bob
I did work some on a project so that was a positive for the day as well. And my transformer arrived in the mail so I have my monitor back again. I still cannot imagine why it went especially given the fact that it's plugged into a surge protected outlet. Oh well!
But I can't get it out of my mind that tomorrow it's back to the clinic. It felt so good not having to go all those Wednesdays. But, I guess that it's about time to get an update as to how well I am doing and see what the immediate future may bring.
All the celebrating has come to an end for a while - at least for events. There is always cause for celebrating everyday as my progress has been so good.
So, tomorrow it's up at 5 AM but we should be back around 9.
Slowly but surely I advance forward...
Bob
June 22, 2009 10:40 PM
41 years! Who da thunk it!
We has a quiet celebration with some of the family at a local restaurant after my son-in-law's pinning ceremony wherein he was promoted to captain at his local fire station. Of course it's a volunteer position but it does not diminish the amount of effort and preparation that he put in to pass the written test and the oral cross examination that were part of the promotion process. Today is also his birthday.
Therefore, we went to the restaurant to celebrate all three events. They nicely seated us in a separate room with no other people around which made the whole thing doable. I find that I can't seem to eat as much as before either. Some bread, a taste of the appetizer, and most of the entree are as much as I can handle. I watched my almost 13 year old grandson down lots of bread, the appetizer, the entree, and follow it up with a big ice cream sundae! Ah, those were the days...
That was the highlight of the day. After 41 years your ability to party all night kind of diminishes and all night becomes more like all evening. Next thing you know, it will turn into early evening - but we have a few years to go before we hit that plateau.
I have survived the day and am now steeling myself to get up at 5:00 on Wednesday to get to the clinic. It seems like old times.
It really does seem great to be able to participate in a few more things...
Bob
We has a quiet celebration with some of the family at a local restaurant after my son-in-law's pinning ceremony wherein he was promoted to captain at his local fire station. Of course it's a volunteer position but it does not diminish the amount of effort and preparation that he put in to pass the written test and the oral cross examination that were part of the promotion process. Today is also his birthday.
Therefore, we went to the restaurant to celebrate all three events. They nicely seated us in a separate room with no other people around which made the whole thing doable. I find that I can't seem to eat as much as before either. Some bread, a taste of the appetizer, and most of the entree are as much as I can handle. I watched my almost 13 year old grandson down lots of bread, the appetizer, the entree, and follow it up with a big ice cream sundae! Ah, those were the days...
That was the highlight of the day. After 41 years your ability to party all night kind of diminishes and all night becomes more like all evening. Next thing you know, it will turn into early evening - but we have a few years to go before we hit that plateau.
I have survived the day and am now steeling myself to get up at 5:00 on Wednesday to get to the clinic. It seems like old times.
It really does seem great to be able to participate in a few more things...
Bob
June 21, 2009 11:10 PM
It was a quiet Father's Day though we did go to my daughter's house for a while. But, just being here is certainly cause enough for celebration.
And the celebrating continues on! Tomorrow is our 41st wedding anniversary. Another one of those eventful days that I might have missed. These days do stand out for me and, I am sure, will probably stand out for me for the rest of my life. They always stand out but now it will be moreso than they would have otherwise.
Tomorrow is my son-in-law's birthday as well and he is being pinned as a newly promoted captain in the fire department tomorrow night at the Town of Milford Board of Selectmen meeting. We plan on attending the ceremony as not many people are expected to be there. If there is an excessive number, I'll stay in the car. We'll see how it plays out.
The weather here has been very depressing. It rains just about every day and the weathermen liken our weather to that of April. No warm days and more than normal rainfall have been what we have been experiencing. I'm not getting a lot of outside exercise but inside projects are serving nicely as a substitute.
Healthwise, I'm still doing fine. Thank you, God!
Please keep those prayers coming, they work so well...
Bob
And the celebrating continues on! Tomorrow is our 41st wedding anniversary. Another one of those eventful days that I might have missed. These days do stand out for me and, I am sure, will probably stand out for me for the rest of my life. They always stand out but now it will be moreso than they would have otherwise.
Tomorrow is my son-in-law's birthday as well and he is being pinned as a newly promoted captain in the fire department tomorrow night at the Town of Milford Board of Selectmen meeting. We plan on attending the ceremony as not many people are expected to be there. If there is an excessive number, I'll stay in the car. We'll see how it plays out.
The weather here has been very depressing. It rains just about every day and the weathermen liken our weather to that of April. No warm days and more than normal rainfall have been what we have been experiencing. I'm not getting a lot of outside exercise but inside projects are serving nicely as a substitute.
Healthwise, I'm still doing fine. Thank you, God!
Please keep those prayers coming, they work so well...
Bob
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