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