One Year Post Transplant February 2, 2013

Hello Everyone,

One year ago today, we were a nervous wreck knowing that Tyler and myself were preparing to go into surgery the following day. I think every emotion possible crossed my mind, but what I remember the most is having a feeling of peace knowing that this would help him become healthy.

Whatever fears I had were quickly dismissed knowing that in the end, although a transplant is not a cure they told me, but a treatment I still felt this was our chance to improve my sons life and here we sit one year post-transplant and that is exactly what happened!!!!

Every single day we read about illness that people face and thank God that we have been given the gift of health. Day in and day out I sit and fill that pill box with the medications needed for "our kidney" to survive I am reminded of how quick things can change and how lucky we are that our story although  not over, has up until this date had a good ending.

Our situation showed me how strong my sons are. Tyler enduring the illness and Ryan enduring all the focus we had to put into saving his brother. It has proved to me that my husband and I are such a united front that we can make anything possible. It warmed my heart to have my family and friends reach out whenever we needed a hand. To say this has changed my outlook on life would be an understatement.

Tyler is scheduled next Wednesday Feb. 6th for his yearly check. He will have a renal ultrasound, an echo cardiogram blood work and his checkup. He is feeling great so we expect that all will be well. May you all be blessed with good health in the future.

As of today over 117,000 people just in United States alone sit on a transplant list of some kind, please pray for those still waiting.....

We are truly blessed!!!!
The Murphy Family

Almost 5 months!!!!

Hello,

We hope everyone is doing well!!!  It will soon be 5 months since the kidney transplant I thought I would give everyone an update.

I am doing very well, to me it feels like I never even donated, other than the obvious battle wounds!! Tyler has been doing well taking all his medications like clockwork and in general feeling pretty good.

Unfortunately, his creatinine level (kidney function) was declining just a little bit when we went for blood work on Tuesday. He had a renal ultrasound on Wednesday and they do not see anything wrong as far as the "structural" part of the kidney. So, on Monday we do have to get another kidney biopsy because as the doctor explained they do not want to miss anything as far as rejection goes.

Of course, Tyler is not to happy about this and having to spend another night in the hospital. The reason they do this is to check and see if antibodies have developed against the new kidney or if it could be cellular.

We are praying nothing is happening at all, but better safe than sorry. So, add an extra prayer if you would that this biopsy turns out well!

We will update as soon as we know.

Susanne and Steve

Long week with the WBC

Good morning everyone,

For the past week or two Tylers WBC has been getting lower and lower. Since last Friday he has had to get blood work Tuesday,Wednesday and today. It was so low he unfortunately had to get two shots already this week and this morning we are here waiting for results to see if he has to get another one.

These shots that boost his WBC are called Neupogen, with all the different medications that make his immune system so low sometimes this happens. Hopefully they are working because of course otherwise we will be worried about him getting sick even with a basic cold. Keep your fingers crossed these are working.

Also, I want to mention that this Saturday my nephew Logan will be at St. Teresa doing a lemonade stand to raise money for the Leukemia Lymphoma Society. As I have told you before he is battling ALL and has been such a fighter and inspiration to all of us! So, if you happen to be around the area please stop by and show your support between 7:00 and 1:00. 

Otherwise, have a great weekend and we will keep you updated.

The Murphy Family

Post Transplant Update April 17, 2012

Hello,

I know I have not posted for a while, but that is just because everything is going very well!!!!!! It actually feels good to not update constantly haha. Anyway Tyler is doing wonderful and other than his WBC taking a few dips, he is adjusting to the kidney just fine.

Also, I myself just had another check up this past Friday and just this morning found out that all my blood work looks spectacular! My one kidney is doing perfect and my kidney function is considered to be the same as if I still had two! I would never wish this experience on anyone, but I will say it has made us stronger and more appreciative of health, family, friends, and just life in general. You never know what is around the corner so live for the day.

Also this past Friday, the doctor asked Tyler to speak with a twelve year old boy that just arrived at Children's from Toledo who was preparing for a deceased donor kidney transplant. I think God put him there at that specific time because this child also suffered from HSP just like Tyler. Dr. Goebel said Tyler and this other boy are the only two cases he knows of from Ohio that had kidney failure from this. Tyler is up there today for another check up and will be delivering him a little care package from us which includes a Cincinnati Reds hat so he always remembers someone in Cincy is praying for him.

April is donate life month and we just want to say please make sure you are an organ donor, people are saved everyday by your gift of life. Currently there are 91,000 waiting for a kidney alone and many others waiting on organ lists.  Please keep the prayers going and don't forget to keep praying for my nephew Logan as he continues to battle Leukemia.

Love to all,

The Murphy Family

Post-Transplant update

Hello everyone!

Well, we are going into our 4th week and Tyler and I are healing very well. Tyler goes at least twice a week to the doctor for blood tests and medication changes and so far he is accepting my kidney like it belonged in his body! I went this past Friday for my check up with the surgeon and he said I am doing well. I will return in 6 weeks and they will do a renal panel on me to make sure my remaining kidney is doing the work of both.

Other than some serious boredom of all of our parts, the healing process has gone smooth. Not only in these past few weeks, but for two years we have been overwhelmed with our support we have had from everyone. Friends, family, neighbors, old classmates, cousins, aunts, uncles, etc. have been our constant source of shoulders to lean on!

I just wanted to mention also that the 7th grade girls basketball team from Lourdes that Steve coaches are wonderful!! They all got together and sent the ladies over and they cleaned our house this morning and gave us a gift card to go out to eat! We just could not ask for a better community! So a big thank you to all the parents! Continued good health to all and prayers for anyone who needs it!

The Murphy Family

Post Transplant Update Feb. 15 2012

Hello,

Here we are almost 2 weeks after surgery and we are still amazed with this entire process. Tyler is doing wonderful, he is not loving taking 30 some pills everyday, but as we explained to him it will eventually get to be lower doses. Also, it is been a challenge to explain that he cannot go out of the house and be around groups of people because as we all know 15 year old boys want to be on the go.

I am also feeling better each day and have to realize that I am 38 not 15 and my healing process will be slower. It is also hard to accept that I will feel great one day then the next day my pain is back again. Somewhat frustrating, but I guess I should take advantage of laying around!

Ty has been back twice to Children's already and will be going twice a week for a few months while they get all the medicine in order. I will go back next week so my doctor can check my kidney function and how well my incisions are healing. We have continued to be blessed with help from family and friends. Dinners, calls, cards etc. are all very much appreciated! Steve is taking very good care of us and has been on top of everything which makes the healing process easier. I will keep the updates coming.

Thanks,
Susanne and Steve, Ry and Ty

Starting to get back to our new normal....

Hello everyone!

I am finally feeling up to writing in the blog. I cannot believe it is already six days post-surgery. As you all know my surgery on Thursday was nothing less than a perfect surgery. The doctors said they wish they could of taped it because it was like my kidney was made for him. I don't remember much from Thursday and Friday other than just sleeping taking medicine and some serious pain. Thankfully my sisters were able to spend the night and family was here with Steve Tyler and I the entire time. And Tyler never missed a beat and was feeling well right away!

So, when Saturday arrived I thought things would just keep getting better and then murphys law took over and I was very wrong lol. Since I was so nauseated they were trying to give me medicine for that and after getting sick twice they tried a different one and all hell broke loose. From what I remember and was told, I was shaking violently and before you knew it EKG machines, chest xrays and more medicines were given then I think I woke up 5 hours later.

That was our only setback so we are feeling good now about our recoveries. My family does have some funny stories that I am sure will be passed around eventually! Thanks for all the continued prayers and I will keep updating daily!
Love to all,
Susanne Steve Ry and Ty                                      

One week left....

Hello,

Well, the countdown is on. While Ty is doing dialysis this morning, I had my final blood cross match. It feels good to use the word final for the blood work. What I am thinking is around this time next Thursday they should just about be ready to take my kidney (give or take an hour) and put it in Tyler.

Our emotions are all over the place, but I would say we are all feeling great. The roller coaster ride has been long to say the least and we will have many more twists and turns to navigate for a long time, but we are just thankful that the waiting part is coming to an end.

Tyler has Monday and Wednesday left for dialysis because they want him to be in the best shape for Thursday. I will post next week and let everyone know the agenda for February 2nd. I was thinking today about a thing someone said to my sister Michelle; When hearing I was the donor for Tyler a woman said to her "She gets to give him the gift of life twice" what an amazing way to think about it! 

Thanks for all the continued support!

Steve,Susanne, Ryan and Tyler

Two more weeks.....

Hello all,

The count down is on two weeks left and things are looking to be in order. This week was kinda long for Tyler with the dialysis. He went in on Tuesday and about an hour into it he started shaking and feeling very ill. He had a fever of 102 and they had to stop the dialysis. He had an infection in his port and of course as soon as they started all the infection went right into his blood. Thankfully, after three different doses of antibiotics that day he was able to resume dialysis on Wed and today.

He is handling it well, but as you can all imagine he is tired and losing some weight in the process. So I have spent the morning cleaning the house with every antibacterial product known to man because neither one of us can get sick. Steve has been doing all the treatment days while I continue to work and is becoming a regular at Childrens.

Otherwise I am happy to report that my nephew Logan finished his first 30 day treatment and is now home. Although he has a long way to go, thankfully they can at the very least have some comforts of home. They are also living in the world of antibacterial products and will be for a very long time!

Friends and family have been so wonderful to all of us and we know how blessed we are! Good health to all..... Susanne and Steve

Only a few weeks left.....

Good morning,

As of Friday they have confirmed our transplant date. It is set for February 2!!!  They told us our date had been changed three times and finally this is what they settled on. I do still have my appointment to see the surgeon this coming Friday the 13th, so we hope no more curve balls are sent our way.We are very happy that they were able to do it so soon and Tyler will only be on dialysis for a short amount of time. The first few days after the surgery he was feeling pain in his neck and was not feeling better from the dialysis, but with each passing day his pain has gone away and we now hope the dialysis will start to make him feel better instead of causing exhaustion.

On a different note, we want to mention how proud we are of the family we are surrounded by. They have taken it upon themselves to start a fundraising page to help support us while we have to dedicate all our time to this transplant in the upcoming months. Our support system has been incredible and we cannot begin to describe what it means to us. My sister Liz came up with a name called Murphys On The Mend, and we believe that is exactly what our future holds and that in the end we will be mended. giveforward.com is where you can find it.

Thanks for all the love and support,

Steve,Susanne Ryan and Tyler

First Day of Dialysis January 5, 2012

Hello,

Tyler had his port placed this morning and all went well. Other than a sore throat and some neck pain from it he is doing well. After that we went down to have just one hour of dialysis to make sure everything was working correctly.

He will go back Friday and Saturday for two hours each day to get the process moving. Starting next week we will be going on Tuesdays and Thursdays.They are hopeful he will only have to do two days a week and will check his blood work every Thursday to make sure that is enough. He cannot take showers now so that is something he is not happy about but you have to keep all germs away.

Thanks for all the support and prayers and we will keep everyone updated!

Susanne and Steve

The Start of Dialysis

Hello,

On Thursday Tyler will be getting in his port and a line. We go in at 9:00 am for the surgery then he will be taken down to have about an hour of dialysis to make sure everything is working correctly. We will then go back on Fri and Sat for an hour or two of dialysis.

So, starting next week he will go on a regular schedule, two to three times a week. We are hopeful that this will give him some relief and make him feel better and also keep him healthy enough for upcoming surgery.

Speaking of surgery, I myself go in to see my surgeon next Friday the 13th. They have been working on a transplant date, but we may not know for sure until after that appointment. Tentative date could be as soon as Feb. 14th, which would be a wonderful day considering it is a day to show people how much you love them!!!

Otherwise, please continue to pray for not only our situation, but others in my family who are also enduring treatment for health issues. We have faith that together we will all overcome our obstacles!!!

Love to all,
Susanne and Steve

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