Tuesday, December 27, 2011
The Doctor called............Prayers do work!!!
I AM A SUITABLE DONOR, CANNOT DESCRIBE HOW HAPPY WE ARE!!!!!!!
They are working on a date for me to see the surgeon and also a Transplant date! Thanks to all for all the concern and continued support, still a long road to travel, but we have the first step finally!!!!!!!! We will update as we find out all the information!!!
Susanne and Steve
Tuesday, December 20, 2011
Our doctors visits today December 20th
Hello,
As you are all aware after my testing last week, the doctor wanted to do one more urine sample, a 24 hour collection and one additional set of blood work (it is called a renal panel) on me today. So, again, for the fourth time in a week, I had to stop at UC to do that on the way to Tyler's appointment at Children's early this morning. When I arrived the nurses told me I was wrong he did not want anymore blood work, so after making sure, I left to head to Children's. Within two hours the nurse called me and said whoops he DID want an additional set of blood drawn not just the urinalysis; needless to say I was very upset and now have to return for a fifth time to get that done wed. Basically, they could not be anymore unorganized up there as far as I am concerned.
Now about Tyler: he is still getting worse and had some bad blood pressure readings today. He now had more medication added on and unfortunately will be forced to start dialysis after the holidays.Tthis is very frustrating for us because we have tried everything to avoid this. We will be getting a call with the date for him to get his port/line whatever you want to call it and that will stay in until about four weeks after the transplant. So, still we sit and wait..and wait...and wait. When I find out anything (because who knows with that place) I will post.
I know many people that read my blog and are praying for Tyler may already know this, but for those of you who do not, I would like you to add my nephew Logan to your prayer list. This past Friday he was diagnosed with Leukemia, he is in 3rd grade. He will be spending this next month in the hospital and is getting his first round of Chemo today. The type he has (A L L) has a very high cure rate and our family knows he will beat this, but he will have a very long road to travel during treatment and recovery. So as you all enjoy your holidays please take a moment to realize just how lucky you are to have your health!
Thanks
Susanne and Steve
Now about Tyler: he is still getting worse and had some bad blood pressure readings today. He now had more medication added on and unfortunately will be forced to start dialysis after the holidays.Tthis is very frustrating for us because we have tried everything to avoid this. We will be getting a call with the date for him to get his port/line whatever you want to call it and that will stay in until about four weeks after the transplant. So, still we sit and wait..and wait...and wait. When I find out anything (because who knows with that place) I will post.
I know many people that read my blog and are praying for Tyler may already know this, but for those of you who do not, I would like you to add my nephew Logan to your prayer list. This past Friday he was diagnosed with Leukemia, he is in 3rd grade. He will be spending this next month in the hospital and is getting his first round of Chemo today. The type he has (A L L) has a very high cure rate and our family knows he will beat this, but he will have a very long road to travel during treatment and recovery. So as you all enjoy your holidays please take a moment to realize just how lucky you are to have your health!
Thanks
Susanne and Steve
Friday, December 16, 2011
Friday December 16th
Hello,
I could not resist telling everyone what happened to me today when I went for my repeat Glucose screening. So, as you all know that is the only thing that he wanted to double check and as I sat there today and the girl took my blood she said come back in a half hour and drink this sugar drink in five minutes. When I went back at 9:30 to get blood drawn again I asked her why she was doing it another way. Well, she was in shock that on Tuesday the other girl made me drink two drinks and said she needed to call the manager of the lab and get this figured out.
With that, I was very upset and went to the doctors office window and told the nurse someone better tell me what is right and what is wrong because this isn't just a physical, this is my sons life we are talking about (they pulled me into the office so I did not create a scene) Next thing you know and man was there asking me what exactly happened? My response- Sir, what is exactly happened is your hospital did my tests wrong and you have the lab paper right in your hand, I would like your name, the lab girls name and any other name I may need to figure out who screwed up. And not to mention the fact that this could have eliminated me from giving my son a kidney. He said: I will have to investigate what happened and you will get a call: I said don't worry, YOUR HOSPITAL will be getting a call.
Then the doctor came out and told me if he would not have repeated the test he could have eliminated me yesterday and never known the difference!!!!!! Can you imagine that I could have been done because someone gave me all that extra sugar no wonder why my body did not get rid of it fast enough!!! If he gets the results back today he may be calling my tonight to tell me it is fine. So, now that I look like I stick needles in me for the fun of it, hopefully all the testing is over for me. Always be your own advocate, this could have put Tyler months waiting for someone else to do all the testing.
Have a good weekend
Susanne
I could not resist telling everyone what happened to me today when I went for my repeat Glucose screening. So, as you all know that is the only thing that he wanted to double check and as I sat there today and the girl took my blood she said come back in a half hour and drink this sugar drink in five minutes. When I went back at 9:30 to get blood drawn again I asked her why she was doing it another way. Well, she was in shock that on Tuesday the other girl made me drink two drinks and said she needed to call the manager of the lab and get this figured out.
With that, I was very upset and went to the doctors office window and told the nurse someone better tell me what is right and what is wrong because this isn't just a physical, this is my sons life we are talking about (they pulled me into the office so I did not create a scene) Next thing you know and man was there asking me what exactly happened? My response- Sir, what is exactly happened is your hospital did my tests wrong and you have the lab paper right in your hand, I would like your name, the lab girls name and any other name I may need to figure out who screwed up. And not to mention the fact that this could have eliminated me from giving my son a kidney. He said: I will have to investigate what happened and you will get a call: I said don't worry, YOUR HOSPITAL will be getting a call.
Then the doctor came out and told me if he would not have repeated the test he could have eliminated me yesterday and never known the difference!!!!!! Can you imagine that I could have been done because someone gave me all that extra sugar no wonder why my body did not get rid of it fast enough!!! If he gets the results back today he may be calling my tonight to tell me it is fine. So, now that I look like I stick needles in me for the fun of it, hopefully all the testing is over for me. Always be your own advocate, this could have put Tyler months waiting for someone else to do all the testing.
Have a good weekend
Susanne
Thursday, December 15, 2011
Results from my testing
Hello,
It's not over yet. So, here is the story.... I spent about an hour with the doctor today and I am in great health. My health history is wonderful and all my blood work looks great also. My EKG and chest x-rays were great, I have no history of any problems with my Kidneys. The only thing he wants to retest is my glucose. Since we do have diabetes type 2 in the family, he just wants to make sure.
My numbers were within normal range, but at the highest normal. They just have to be 100% so I do not have problems in the future ( which of course I told him I really don't care about that haha) However, today they did a finger prick and I was perfectly normal. So, my thoughts are considering I did not know I was getting a glucose screening on Tuesday, that the pop, coffee with cream and sugar, big boy meal from Frischs with a coke and topped off with a piece of apple pie Monday night before nine may have raised my sugar somewhat lol!
Also, there was some protein in my urine test on Tuesday, but none today. So to sum things up this is what is next. He tried to tell me we would retest again in one to two weeks, and after I cried right in front of him and told him I cannot possibly wait that long, he had a change of heart and has me repeating my glucose test in the morning and then checking my protein again on Tuesday.
By late Tuesday afternoon or Wednesday he will call me to tell me 100% yes or no. I am in really good spirits and believe this is just a minor bump in the road and I will be the donor based on the rest of my results. I asked him if I was allowed to have beer tonight because I could really use a drink and he was laughing and said that is perfectly fine! Otherwise I will be making it my mission to have nothing with sugar in it today!!!!!!!
Love to all and thanks for the continued support!!!
Susanne and Steve
It's not over yet. So, here is the story.... I spent about an hour with the doctor today and I am in great health. My health history is wonderful and all my blood work looks great also. My EKG and chest x-rays were great, I have no history of any problems with my Kidneys. The only thing he wants to retest is my glucose. Since we do have diabetes type 2 in the family, he just wants to make sure.
My numbers were within normal range, but at the highest normal. They just have to be 100% so I do not have problems in the future ( which of course I told him I really don't care about that haha) However, today they did a finger prick and I was perfectly normal. So, my thoughts are considering I did not know I was getting a glucose screening on Tuesday, that the pop, coffee with cream and sugar, big boy meal from Frischs with a coke and topped off with a piece of apple pie Monday night before nine may have raised my sugar somewhat lol!
By late Tuesday afternoon or Wednesday he will call me to tell me 100% yes or no. I am in really good spirits and believe this is just a minor bump in the road and I will be the donor based on the rest of my results. I asked him if I was allowed to have beer tonight because I could really use a drink and he was laughing and said that is perfectly fine! Otherwise I will be making it my mission to have nothing with sugar in it today!!!!!!!
Love to all and thanks for the continued support!!!
Susanne and Steve
Friday, December 9, 2011
Update Friday December 9
Hello everyone,
Well, we went back in today and Tyler had to get a couple shots, and also an injection in his stomach (ouch) that is pretty painful to say the least. These injections will be given to him at home by us twice a week to try and get his red blood cell count higher. All his blood work remains the same from the other day but they did up his blood pressure medication so now he gets a double dose of that each day and also added steroids again.
The doctor explained that if we start dialysis it may help him feel a little better, but this will require him to go into surgery and get a line put in his neck and of course once he heard that he was saying no way. Unfortunately like I explained to Ty, he will be getting that anyway for the transplant so if it happens earlier that is just the way it has to be.
There are three living donor surgeries scheduled at Childrens in January, so we are most likely looking at February for the transplant if I am the donor. However, if anything happens where someone cannot do the surgery they could slide us in to their spot.
So, next week I go Tuesday, then back Thursday for results. If they clear me then I will have to meet the surgeons at Childrens and anesthesiologist as soon as they can get me in. For now, everything is on a day to day/week to week basis. Our hope is in one week we will know it is me and we have a light at the end of the tunnel. A funny note from today is when we were sitting in the room waiting for the doctor Tyler asked me if he could play indoor soccer starting in January because this kid asked him to be a sub for the team, really??? Just when you think they understand how sick they are, they say something like that!! I just told him we would wait and see.
Have a good weekend,
Susanne and Steve
Well, we went back in today and Tyler had to get a couple shots, and also an injection in his stomach (ouch) that is pretty painful to say the least. These injections will be given to him at home by us twice a week to try and get his red blood cell count higher. All his blood work remains the same from the other day but they did up his blood pressure medication so now he gets a double dose of that each day and also added steroids again.
The doctor explained that if we start dialysis it may help him feel a little better, but this will require him to go into surgery and get a line put in his neck and of course once he heard that he was saying no way. Unfortunately like I explained to Ty, he will be getting that anyway for the transplant so if it happens earlier that is just the way it has to be.
There are three living donor surgeries scheduled at Childrens in January, so we are most likely looking at February for the transplant if I am the donor. However, if anything happens where someone cannot do the surgery they could slide us in to their spot.
So, next week I go Tuesday, then back Thursday for results. If they clear me then I will have to meet the surgeons at Childrens and anesthesiologist as soon as they can get me in. For now, everything is on a day to day/week to week basis. Our hope is in one week we will know it is me and we have a light at the end of the tunnel. A funny note from today is when we were sitting in the room waiting for the doctor Tyler asked me if he could play indoor soccer starting in January because this kid asked him to be a sub for the team, really??? Just when you think they understand how sick they are, they say something like that!! I just told him we would wait and see.
Have a good weekend,
Susanne and Steve
Tuesday, December 6, 2011
Update from December 6 appointment
Hello,
Well information overload today. For the past week or so Tyler has been having many symptoms including fatigue, headaches, dizziness and loss of appetite. So, since he was not scheduled to go to the doctor until December 20th, we had to call and they wanted to see him right away.
So as we suspected, he has gotten worse over the past 6 weeks. He is now below 10% kidney function. Also, his red blood cell count is low and he has lost some weight. All the doctors discussed starting dialysis on him and they decided that since my testing is next Tuesday the 13th, we will try to get him as far as possible without it in hopes that I will be the donor and we can schedule surgery for the transplant.
They are adding medications to help with this and also he will be getting a couple injections a week to stabilize his rbc count. They are fearful that he needs to be healthy enough to go into surgery and although starting dialysis may make him feel better daily, it could be very hard on him and we need his health to stay good enough.
We return to the doctor on Friday for the first injection and we will learn about dialysis treatment so if it happens we are prepared. Our guess is that things will be changing daily for him and we just have to go appointment to appointment and deal with it as it comes. If I am not the donor, they will have to put him on it for sure.
Tyler himself has been super strong and really has been taking all this well, (better than mom) but as they say kids are very resilient. Keep us all in your prayers as we hope for some better news next week that I can donate and we can get him better.
Thanks Susanne and Steve
Well information overload today. For the past week or so Tyler has been having many symptoms including fatigue, headaches, dizziness and loss of appetite. So, since he was not scheduled to go to the doctor until December 20th, we had to call and they wanted to see him right away.
So as we suspected, he has gotten worse over the past 6 weeks. He is now below 10% kidney function. Also, his red blood cell count is low and he has lost some weight. All the doctors discussed starting dialysis on him and they decided that since my testing is next Tuesday the 13th, we will try to get him as far as possible without it in hopes that I will be the donor and we can schedule surgery for the transplant.
They are adding medications to help with this and also he will be getting a couple injections a week to stabilize his rbc count. They are fearful that he needs to be healthy enough to go into surgery and although starting dialysis may make him feel better daily, it could be very hard on him and we need his health to stay good enough.
We return to the doctor on Friday for the first injection and we will learn about dialysis treatment so if it happens we are prepared. Our guess is that things will be changing daily for him and we just have to go appointment to appointment and deal with it as it comes. If I am not the donor, they will have to put him on it for sure.
Tyler himself has been super strong and really has been taking all this well, (better than mom) but as they say kids are very resilient. Keep us all in your prayers as we hope for some better news next week that I can donate and we can get him better.
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