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

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

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

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

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   

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

Testing Scheduled

Hello all,

Well, my testing has been scheduled at University Hospital. Unfortunately, it is not until December 13th! However, they did put my on a cancellation list (well that is what they say) to get me in sooner if possible. Anyway, after that day I will go back two days later on the 15th to find out all the results. If I pass all of that, then we assume the date will be set for the transplant (which we should know 6 weeks in advance) unless something of an emergency nature comes up. If they find anything wrong with me (which I do not believe they will) then immediately Steve will get his cat scan of his Kidneys, and we start all over. So, for now another few weeks of waiting and worry, but we have a feeling that finding the match will be our Christmas present this year!
Susanne and Steve

Finally, some good progress!

Hello all,

We are happy to report that today the nurse called me and the surgeon thinks I will be ok to give Tyler one of my kidneys!!!!! Now, of course, I do have further testing to do; the next step is to get evaluated by a doctor at University Hospital. The appt. will be 4 hours long (Yuck) but they will do all my blood work, chest x-rays, EKG, a medical history and who knows what else. A few days after that I will go back in and she will tell me all the results. The nurse is scheduling everything and will hopefully call me by Monday to let me know when this will be, but for know we are very happy that we still have a chance that it is me, how amazing would that be! Have a great weekend everyone.

Susanne and Steve

Recap from our appt. October 24, 2011

Hello,

Whew one long day at the hospital, but we are happy another set of appts are under our belts. Today we met with different people all involved with the Kidney Transplant team. Everything went well and we have a good idea of what is ahead of us. Tyler had all his blood work done and as to be expected, his body is showing signs of wear and tear. He is anemic and being put on iron, also his blood pressure was high and now he will be back on blood pressure medicine. This is obviously what starts to happen as you near kidney failure. His official kidney function today was 13%. They do tend to start dialysis around 10%, but his doctor does base it on the individual. If he starts to have nausea, can't eat etc. we would be forced to do it, but let's hope that never happens.

My results from last Thursday were sent to the surgeon and he still is trying to decide if I can be the donor. He sent them on to a few urologist and I will know something more by wed. or thurs. this week. So, the minute we find the donor the surgery will be scheduled. Information overload at this point.  We will keep updating as we find out results. Susanne and Steve

Written Test Results from Oct. 20th

Hello,

So far they said my function is 60/40, they really want it to be 50/50 equal in both kidneys. I may have to get yet another test, but it was sent on to the surgical team for them to take a look. At some point they may make me stop because it could still be that in the end after all this I would still be eliminated. I am trying to be positive and just wait until Monday to see what they have to say for certain. Another long waiting game and another long weekend. I will update everyone next week.
Thanks for all the support

Susanne

Next testing scheduled

Hello again,

My next test is now scheduled for October 20th. They will do what is called a nuclear gfr test at Childrens again. I attached the explanation below. I will have written results by that afternoon, but on Monday Oct. 24th we will be spending the day there for all of Tylers appointments so I hope that I will be able to get exact results that day from my tests. So, for now we have a week and a half off, then two big appointments in a row. So, we will update again when we know all those things. As for now, I am still keeping a positive attitude that I will be able to donate. Thanks to all who keep us in your prayers day and night!
Susanne and Steve

In-Depth

What is a GFR?
A glomerular filtration rate test (GFR) is a measure of the function of your kidneys. Glomeruli are tiny filters in your kidney that allow waste products to be removed from the blood. The rate refers to the amount of blood that is filtered per minute.
Aradiopharmaceutical called Technetium-99m DTPA is injected into one of your child's veins. Technetium-99m DTPA has a tiny amount of radioactive molecules in it.
After the injection, a 10 second picture of the injection site will be obtained. You will then be instructed to return to Nuclear Medicine for your blood to be drawn two, three and four hours after the injection.
When might a GFR be needed?
The GFR allows the nuclear medicine physician to assess the degree of kidney impairment and to follow the course of kidney disease. However, the GFR provides no information on the cause of the kidney disease.
A GFR test can help measure kidney function in:

• patients who are undergoing chemotherapy
• patients who have had a renal transplant

• evaluation of renal donors.                                                       

Further Testing

Hello,
So, I have decided to keep my testing going on my Kidneys. One of two options: either go to Dr. Burroughs at University then on to the Urologist or option #2, go back to Childrens again and they will inject dye into my Kidneys to see how both of my kidneys are working as far as making sure they are excreting everything in a 50/50 manner. The doctors opinion was option #2 to save time on all my tests. The nurse will be calling me back as soon as Dr. Goebel writes the order for my test and I told her I can come in any day any time. If all goes well after that test, then my last and final step (at least thats what they say) will be going to University for my physical/blood tests/chest xrays etc.

Tylers Dr. said he is still certain that he will need the transplant by late winter so I am trying to push them on all these tests so Ty does not have to end up on dialysis. Let's just hope next time they don't have to stick me 5 or 6 times like they did last week!  As always, thanks for all the support.

Susanne and Steve

Update on results from my CT last week

Hello all,

Well, the nurse called today again and said the surgeon thinks I need further testing. They would want me to go see the doctor at University first, then she would send me to a Urologist who would further evaluate my left kidney to make sure it would function if they take my right.  The major dilemma is it could take another 2 months for all this to occur and in the meantime no one else would be going forward with more testing.

We will be running a major risk that if I end up not being able to donate, then by the time Steve goes forward and so on will Tyler's kidneys last long enough before transplant to not be forced to start dialysis? As we ponder this decision we are waiting for Ty's doctor to call with his opinion about it. His function has dropped so much in the past few months, we are hopeful he can at the very least tell us what he thinks we should do. I don't want to give up on being the donor myself, but the only person hurt in the long run is Tyler if we take the chance and he has to sit on dialysis. Ugh.... either way I go it just won't feel right. I am about 98% sure I will go on still, but that little part of me would never forgive myself if he ends up on those machines while we could have already been working on another donor.We will let everyone know when we here from the doctor and if I can get into these doctors any faster!

Susanne and Steve     

Written report on my CT of Kidneys

Interesting I have two ureter tubes on my left side. Basically this means that one may flow from kidney to bladder and the other could flow from bladder up to the kidney.
So, the nurse said they would not take my left one for sure and the surgeons would look to see if  they were to take my right kidney, would my left work properly afterwards. So, anyway I will not know what they think until Mon or Tues and they may want additional testing for that. Otherwise, my stupid veins kept rolling as they call it and I was basically stuck 6 times and my hand and wrist are swollen, finally the doctor had to do it so I could get the contrast dye in, haha Murphys Law of course.

Renal Ultrasound

On Thursday at 9:00 I will have my renal ultrasound. If all looks good I could have a written report as early as that afternoon, but all the doctors need to look so complete results could take a few days to a week. The nurse said today that the biggest hurdle is the vessels connecting correctly and that some people have tons which would just be to hard to do surgery on. So, I never thought I would be saying this but, pray I have the correct amount of renal arteries? Have a good day.

What is a renal ultrasound and renal arteriogram?

A renal ultrasound is an x-ray test that shows the size, number, position and structure of the kidneys. A renal arteriogram is an x-ray test that shows the number, size and location of the renal arteries (vessels that supply blood to the kidneys). A dye is injected into a large artery in the groin. This dye flows into the renal arteries so that they can be seen by x-ray.

Our tissue matching results

Good news today. All three of us that were tested are still matching well with Tyler. Steve has 3 out of 6, Tiff has 4 out of 6 as well as myself. So as the nurse said, he is very very lucky!!! I will be going ahead with the next step which is the kidney ultrasound hopefully by the end of this week. This will be a big step for us to see if my kidneys are healthy and would be a good match in his body. If not then Steve will get one done and so on. Below, I attached what the matching antigens mean for a kidney transplant. I guess those Timmers genes are just as strong as we thought!  Other than that, we just wanted to say thank you to everyone that has already expressed they would be tested for Tyler. We have always known that we had a great family and great friends, but we feel so blessed to have such love, help and concern from everyone.

Susanne and Steve

                

Tissue Matching
Tissue matching is a very complex area involving testing the similarity of certain proteins, called antigens, between the donor and recipient, which are defined through blood tests. We all have many genes, some of which determine the expression of these antigens. For kidney transplantation, we currently look at six of these, called major histo-compatibility complex or HLA antigens. By analyzing which six of these specific antigens both individuals have, we are able to determine the closeness of tissue matching. A six-antigen match (both people have the same set of six antigens) is the best compatibility between a donor recipient pair who is not identical twins. This match occurs 25 percent of the time between siblings having the same mother and father and also occurs from time-to-time in the general population.
Long-term outcomes in kidney transplantation do relate to matching (as well as other factors), which is the reason for seeking the best possible match. Analysis of thousands of transplants consistently shows that six-antigen matched kidneys have the best statistical results, followed progressively by five antigens, and then four antigens, etc. For this reason, when a close match is available, it is preferred.

Update on appointment status

We just received the call about our next visit. On October 24th, we will go to meet with the Transplant Team for Ty. On that day will will see the anesthesiologist first, then psychologist, then his clinic appt. then transplant finance, then Dr. Alonso the surgeon. Whew, long day for sure! Unfortunately, our test results from the antigen testing are not back yet, which makes for a long weekend!  Otherwise, just keep praying we find a suitable donor in the meantime!  We will update you as soon as we find out results hopefully by Mon or Tues.
Have a good weekend...
Steve and Susanne

Dear Family and Friends,      

We are reaching out to you about our 15 year old son Tyler Murphy. It is to let you know about his current health challenge and how you can help. This is not an easy thing for us to do, but we know that without reaching out, someone who might be interested in helping Ty would not have that opportunity.

In June of 2009, Tyler was struck with a rare auto-immune disorder called Henoch-Schonlein Purpura. Most children fully recover from this, but in a very small percentage of cases like Tyler’s, it can attack the Kidneys. We have been fighting for over two years to save his Kidneys, but unfortunately Tyler is now suffering from kidney failure and we are in the beginning stages of finding him a living donor.

We have already started testing to be donors ourselves, as well as some of our family members. Although we are hopeful that one of us will be able to donate to him, we also pray that others will consider being tested. The process for each person to be evaluated can take about a month, so we need to have back-ups in case any of us end up not being suitable donors. Tyler is getting very close to needing dialysis which would be very difficult on him so we need to find him a kidney as soon as possible.

 If anyone is interested in learning more or has any questions please feel free to ask us or you can contact Tyler’s transplant coordinators Julie Ross R.N. or Debbie Schoborg R.N. at Cincinnati Childrens Hospital 513-636-4531 or 513-636-4536. You can have a confidential conversation with them and get answers to any questions you may have. Please send this to anyone who you may feel would be interested in helping.

You must have A or O blood type to donate and be under the age of 50. Also, donors need to be in good health and not on any medications. We appreciate everyone taking the time to read this and helping us get the word out. We are literally asking you to give a part of yourself to our son, so please take your own family and health into consideration. Thank you all very much!

Sincerely,

Steve and Susanne Murphy

Living Donor Information