8 months and counting......

Hello ya'll, Today marks the 8th month post transplant for Russ. He is doing good. We just visited the Heart Clinic and as we normally do got a good report. Russ has been having issues with his blood pressures being high some days but the doctors are watching it and controlling it with meds. His last allomap (blood work for biospy) came back with no rejection. Coming up in October he will have both an allomap and a regular biospy done so that the transplant team can compare the results. We have started to really watch our diet to help get the extra pounds off that were put on while Russ was on prednisone. Gotta love it, it makes you more hungry. The doctor told Russ that he should be exercising at least 5 days a week doing some kind of cardio so we will get going on a exercise program here now. He is hoping to get back to his bike riding soon. All and all, Russ is doing good each day. Those of you that have followed us since the beginning and continue to follow, Thank you for all the support. Until next time......

Time is marching on......

Well, I am sure I am jumping ahead here but, woohoo, 7 months now. Russ is post transplant 7 months now and going strong. He is riding his bike 3 days a week, doing yard work like crazy (what he is allowed to do). We are just trying to get through this heat this summer. The only thing that Russ is still have issues with is swollen ankles (which does happen to be getting better) and now his blood pressure which we are watching closely. Me...I just need a job really bad. _______________________________________ A funny story....We took a drive the other day, we live about 70-80 miles minimum from Los Angeles. I have to laugh at my hubby cuz he just was non-stop talking the whole way. He gets that way when he is hungry or tired but when I asked him he said no I am not either one. WOW....he said I just feel so good I have all this energy. hehehe. Boy I am not used to this, he has been so quiet for so long, I don't know what to do. Its like have to get to know a whole new person. _______________________________________ We get to see his Cardiologist for a stress test monday, I know Russ will do ok and his doctor will be happy how his is doing....will update after we go. Until next time....Stay cool!!!

Still going good......

Well, this last week was the monthly clinic visit for Russ. A little funny story, we get up to go to the appointment and head over on a Monday, get there to find out that the appt is not until the next day. Gotta love it, well that was a good practice run as Russ puts it. So, on Tuesday we do it all again, this time the right day. The visit was an awesome one, we saw another LVADer that got his new heart on July 5th. Another guy that was never on the lvad had gotten his heart also, there was a couple that the husband received his heart about 10 years ago, also a 23 year old that had a transplant when he was 4 weeks old. WOW.....we had a blast talking to them all and comparing notes. We onto the news....Russ' clinic visit went good, doctor took him off of one blood pressure medicine that probably was causing some of the swelling in the ankles and we got to lower the prednisone. Overall, we are still heading in the right direction. Then Russ did his allomap(biospy), his number was 29 (not quite sure what that means)the doctors say that if he ever got up to 34 then they would be looking at him to see what is going on. But so far so good, no rejection. Next clinic visit is next month so until then.......

Friday the 13th......

SIX MONTH MARK.....Woohoo!!! Who says that friday the 13th has to be a bad day? Not us.....This is the third one this year so far and the second for Russ with a new heart. We no longer think of the it as "so whats going to happen now". We think "Oh great we have another friday the 13th, what good thing will happen today". As with all of us who have gone through receiving "the call", I can remember and I think will always remember like it was yesterday what happened. Most of you know that we were at lunch with friends, we just got to the restaurant and ordered and I was two bits into my salad. My cell phone rang, of course by that point I had the phone number for the hospital down real good, I looked at it and said oh loma linda. There was our life changing call. Onto the hospital to wait wait wait....Now its oh wow it has been six months. What seems like just yesterday one day, seems like forever the next. Thanks to everyone that have been following us. Our first year is not up as yet and there will be more to share. Hope you all will stay with us on our "Road with a new heart". And as a fellow transplantee says " and the beat goes on", Thanks Todd, I stole your saying :)

Wow....We are almost 6 months

Can you believe it? July, it is already July 2012. Time is flying by so fast. We are looking at almost six months post transplant. Wow!!! So much has gone on and so much more to come I am sure. When I sit down and start to think that just 6 months ago (come July 13th) I was sitting in a waiting room wondering what what going on in the operating room. Did they have him prepped yet? Did the LVAD come out? Is his old heart out? Is the new one in? And so on.... (of course I was getting updates about every two hours but you still wonder to yourself these questions). Those that have been following us know that we had a few minor speed bumps the first week post transplant then like nothing he was off and running (well walking). Then 4 months later (April) Russ did his first 5k and made it all the way around ( Not me though). Shortly after that, he started to ride his bike, starting small and now he is up to 6-7 miles each ride about every other day. In October we will be doing a second Heart Walk (5k), this is just amazing me. On June 1st we celebrated our anniversary and thought we were going to celebrate him going back to work. Well, the anniversary happened but not work. Since Russ drives a commercial truck there are California dept of transport medical rules that say they suggest the patient remains out of work for 1 year post surgery. So we wait until January 2013, oh the company laid him off also. OK THE RULES SUCK....but we are dealing with it. Stress and all. I know there is a reason for everything. Just not sure yet what that reason is but there is a reason for everything. Well, now that you all are up to date on us. I would like to say that we have had a few more LVAD groupies receive new hearts this year....all I can say is WOW :) keep em coming. Until next time.....

Biopsy results and etc...

Well, yesterday Russ had a right heart cath and a biopsy done. The right heart cath came back still on the high side but lower than the last one. So that was good. Today we got the results back from the biopsy and again it was "0" rejection and he got to lower the dose of prednisone, so that is even better news. Friday, tomorrow, he goes to get a physical done through the doctors at his work. On Monday he starts back to work. Oh, only fours day away....He can't wait. He goes in for a heart clinic appt on June 15th so stay tuned for more news then. Thanks AuraLee

Getting Closer

We are getting closer and Russ is getting more anxious to go to work. It has been a long time coming for him. It makes me nervous and happy all at the same time. I am happy because I know he is feeling so much better. I am nervous because I am thinking "is it to quick to be going back". I see him being able to do more and more with each new day. It has been only four and half months post transplant but it seems like a lifetime time. Every time I sit back and think about it all, it all still seems so surreal. A new heart, someones elses heart pumping away inside him. WOW!!! Each and everyone of you have been with us along this road and continue to ride along. Thank you so much for all the words of encouragement, words of advice, the prayers. Our road is not done yet. So I hope that you all will continue to ride along with us.

Best news of all.....

Well, after 10 months of not feeling good, having a relapse of congestive heart failure, diagnosed with needing a heart transplant, having the LVAD implanted, two open heart surgeries and 5 months of recovery, we have the best news. Russ is going back to work. He got the news today that his white blood cell count was about 6.0 and they have released him to go back to work on June 1....YAHOO!!!! I have to say I never thought this day would come. It has been so long and such a crazy road we have been on. I am not sure what normal is anymore. Please keep us in your thoughts and prayers as we now move forward on our road with a new heart. Thank you to everyone who has been with us through everything, you all are awesome.

Prayers needed please

Ok, last friday Russ had his visit at Loma Linda at the heart clinic. The visit was good. He was able to be taken off of one of his expensive medications. Then he was told that he was able to start having a blood test that would check for rejection, that came back negative (woohoo).

We got home to a message about his white blood cell count being too low. They want it above 3 and his is lower than that. So, he reduce the dose on one of his meds (Cellcept)in hopes that it would help raise the number up. Today, he had blood taken to see where he was at and again the white blood cell count went down. Not good. So now he is totally taken off Cellcept and will be put on a 3 day shot treatment that is given to cancer patients in hopes that this will raise the number.

I have read that this is normal but it does scare me. Please pray that this is a small speed bump that we have to go over and that all is well.

Thanks
AuraLee

Another friday the 13th.......

Well, we had a visit today that brought some good and some not so good news. Good news is that he gets to get rid of another high cost medication. We are happy. Now the not so good news is that we got home to news that his white blood cell count is low. I guess they want to see a number above 3 and his is below. This means that his immune system is being too suppressed and he can very easily catch anything now. So hopefully by making adjustments to one of his meds he should be OK but they are watching his blood work.

Please hold good thoughts and prayers that the is a minor thing and he stays well.

Thanks.......

More good news

Russ had an echo yesterday and it was in the normal range where the doctors want him to be.  What does this mean?  Means goodbye to one of his $150 co-pay meds, woohoo.

More news, is the local pass area newspaper, Record Gazette, is going to be doing a story on him and this his buddy, Rich (also a heart transplant recepient).  When its out we will share it.

For now we are still going in the right direction.  Until next time........

MADE THE LOCAL NEWSPAPER......

BEAUMONT: Man looking forward to life after transplant

BY ERIN WALDNER

STAFF WRITER

ewaldner@pe.com

Published: 13 March 2012 09:17 PM

The call — the one that could save his life — came while Russell Martin and his wife ate at Sizzler in Banning.

“It’s time,” yelled out Martin's wife, AuraLee.

“She looked at me and she goes, ‘Grab your stuff, let’s go. Loma Linda called. They have a heart,’” said Martin, 45 of Beaumont.

At 7:30 p.m. Jan. 13, just seven hours after that phone call, Martin was wheeled into an operating room at Loma Linda University Medical Center. By midnight, his new heart was beating in his body.

Martin’s heart transplant was one of only 20 to 30 that Loma Linda performs each year. The hospital performed its first human-to-human heart transplant in 1985. The patient was 4 days old and is still alive.

The new heart opens new opportunities, and lets Martin look forward to activities previously closed to him — even something as simple going to the gym or going for a bike ride.

“I tried to do that when I was actually in heart failure — just to ride around our park — and I couldn’t even ride up this slight little incline,” Martin said.

On Monday, Martin went to a Clippers game at Staples Center with his dad, who drove.

Martin’s surgeon said there is no reason Martin can’t lead a normal life, unlike before the transplant.

“He was literally living an hour or day at a time,” said Dr. Anees Razzouk, chief of cardiothoracic surgery at Loma Linda UniversityMedical Center. “This gives him hope for long term.”

THE JOURNEY

Martin was born with third-degree atrioventricular block.

“It means that the top chamber was beating 2:1 to the bottom,” Martin explained. “And I had a slow heartbeat. … I also had mitral valve prolapse” — when a heart valve does not close properly.

Despite all these medical issues, Martin said he lived a normal life until age 43, when he was diagnosed with congestive heart failure. The left side of his heart started giving out.

He was incredibly tired all the time. He would have to take a nap after working just half a day at a cement business in Cabazon. He experienced shortness of breath, to the point where he couldn’t walk a block without feeling out of breath, and his legs were swollen.

Martin received a pacemaker defibrillator and was placed on medication. His symptoms got better, but he relapsed in 2011 and was hospitalized.

When Razzouk, who has performed on assisted in more than 300 heart transplants, met him and saw pictures of his heart, he was amazed Martin was able to function at all.

“He was living on a few extra heartbeats and not much reserve,” Razzouk said.

Martin underwent surgery in October to implant a mechanical pump called a left ventricular assist device, or LVAD. The pump basically replaced the left side of his heart.

The LVAD also gave his other organs time to rejuvenate. Martin’s lungs were very congested, a byproduct of heart failure. In fact, Razzouk said that initially Martin was not a candidate for a new heart because the pressure in his lungs was extremely high.

The pump, however, was a stopgap. It would keep him alive while he waited for a new heart.

Razzouk, who inserted the pump in Martin, said people have lived as many as seven years with the device. Former Vice President Dick Cheney has had one for two years.

Martin said he had more energy after he got the LVAD. But doctors also told him the right side of his heart was then starting to fail.

About 20 to 30 percent of people die while waiting for a new heart, according to Razzouk. Martin was placed on the transplant list in December. The Martins got the call about a match just 21/2 months after he got the LVAD.

“For me, it seemed fast, but there’s actually another guy that lives here in Banning that went through the same thing,” Martin said.

That man is Richard Hess, who received a new heart about eight months ago.

Martin said it’s nice having Hess to turn to with questions.

“We started walking together. We’re becoming friends. We can share stories,” Martin said. It was Hess and his wife whom Russell and AuraLee Martin were having lunch with when the call came from the transplant team.

Martin does not know much about his heart donor, except that the person lived in California, was younger than Martin and weighed about 210 pounds.

Martin is writing a thank-you letter that a donor organization will forward to the donor’s family. And if he could say anything to them now?

“I would just tell them that I was very thankful that the person became a donor,” Martin said. “Apparently, the guy wasn’t just a heart donor. He was a heart, kidney and lung donor.

“It’s amazing,” he added.

THE HEART TRANSPLANT

When Martin was on the operating room table, it took four hours to stop the bleeding, which isn’t uncommon.

Martin felt good going into surgery, considering everything.

“Well, I was pretty confident in Loma Linda ’cause they’ve done so many and they’re well-renowned,” Martin said. “But with any surgery, death is involved. I mean, I knew the possibility was there but I wasn’t even looking at that. My whole thing, after I got the call was, ‘Let’s just get it done, get me home, get me healing.’”

Martin was released from the hospital two weeks after surgery.

Two months later, he is well on the road to recovery. He has been checked five times to see if his body is rejecting the heart, and each biopsy came back negative.

“It’s behind us but I think overall in my mind, I’m still kind of concerned,” Martin’s wife said. He’s still going in for tests and biopsies to check that the heart isn’t rejected.

“I think after five of them I can calm down,” she said with a chuckle.

Razzouk said most heart rejections take place within the first six months.

Martin will have to take anti-rejection medicine for the rest of his life, although the dosage will be lowered over time. One side effect is that the medicine makes his hands shake a bit and he feels a little chilly sometimes.

But he has more energy and no longer feels wiped out.

When people find out Martin has a new heart, they commonly ask what it feels like. His answer: “You can’t feel anything. It just makes you feel better.”

Martin said he does feel like he has a new lease on life. He and his wife are hoping to participate in next month’s Temecula ValleyHeart Walk, a benefit for the American Heart Association.

“It’s like my friend Richard said: ‘We’re one of God’s modern miracles,’” he said. “… I thank the Lord for the blessing I have.”

Follow Erin Waldner on Twitter: @PE_ErinWaldne
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Just love getting good news.....

This week brought more good news.  We ran into one of Russ' doctors while getting his prescriptions filled and she told us ir was ok for Russ to drive but only around town.

On Wednesday he had another biopsy done and today we found out it was negative.  No rejection, woohoo.......We are so on a roll.

Just love getting good news.  All I can say is keep the good news coming Loma Linda.

Until next time.........

This has been an interesting week......

The local paper here in our county, Press Enterprise, interviewed Russ yesterday about what he has gone through regarding his heart condition.  Started with him being born with a heart condition all the way up to the transplant and how he is doing today.  Gonna have a celebrity on my hands.  The interview went good, and the story should be coming out soon.  We will be sharing with everyone just as soon has we can.

Also, Russ got a phone call today from the hospital social worker....the donor family sent a message wanting to know how he is doing, if he had kids, what hobbies he had.  We were both really thrilled that they made some kind of contact.  This is going to help us with trying to contact them.

Well, Russ is doing good still, he will be 6 weeks post transplant as of friday 2/24.  More updates to come next week after his appointments.

2012 Temecula Valley Heart Walk

Hi ya'll

Here I am again, I am going doing another heart walk for the American Heart Association. I am doing this in honor of my hubby Russ who has is now a heart survivor. 

On January 13th of this year he received the greatest gift, a new heart. We have had a rough road for about 2 years now but the roughest part started back in September 2011. We were told he needed a new heart and was being placed on a device that would help him wait until a transplant was available. Thankfully, he did not need to wait that long.

So, with all of what has happened, I am doing this walk along with one in October. I would like to see if I can raise money to donate to this cause that has helped so many people. Please visit my site and every $5 or $10 donation adds up. My personal goal is small but it is a goal $200. Any size donation is appreciated.

Thank you and if you want to join me in the walk itself please register and show up for some fun :)

http://temeculaheartwalk.kintera.org/faf/donorReg/donorPledge.asp?msource=Gigya&ievent=481878&supId=323222213

Awesome appointment today...

We went for Russ' heart biopsy today, we will know the results tomorrow. We also met with Dr Razzouk for the first time since Russ was discharged from hospital. I have never met a greater doctor/surgeon. This man is so caring. He said such great things about Russ to the med student and the doctor that saw Russ the first weekend after his surgery ( they had joined him in our appt). He says that Russ is a special patient ( I am sure he says that about all his patients). But it made us feel good.

We also received a report that goes into detail about the removal of the pacemaker and also the details about the transplant along with Russ' condition prior to the transplant, from us meeting Dr Razzouk up until day of transplant. Very interesting to read, but hard to read. Seems more real reading the diagnosis than it was hearing it.

Anyway, Russ is doing good. Still need to take it easy but all in all he is heading in the right direction. All we can say is, Thank you Dr Razzouk.

Improving with every visit.....

We had the second of many visits to the heart clinic today.  As normal, Russ gave up some blood, which turned out to have nothing wrong.  His numbers that go along with one of his meds are improving each time, so hopefully he will be able to lesson the amount he takes.  He also had an echo done, they told us that it looked really good.  There was improvement in the heart/lung pressures (though the right heart cath test shows the results better).  His heart is pumping 75%, he asked why it is not 100%, Maria (heart transplant coordinator) said no one is 100%.  But the normal is 65% plus or minus 10%.  So Russ is at 75% which is great.

Tomorrow, he has a heart biopsy and we get to see Dr Razzouk (the surgeon that did the transplant).  More updates tomorrow after the appointments.

Thanks for all the support with thoughts and prayers, they have worked.

Good news......

We went in this week for Russ to have a heart biopsy and a right heart cath done.  The right heart cath showed the pressures in his heart/lungs to be a little high.  The doctors seem to think it is because he is retaining some extra fluid.  The heart biopsy came back negative so woohoo the heart is not being rejected.

Next week are the same tests again and we are hoping for the same good news or better.

We are just taking one day at a time.  Overall, Russ is doing good.

Thanks,
AuraLee

Starting the home recovery

Three days home from the hospital and doing great.  We are both learning how to handle all his meds.  Because of the surgery, he came home on insulin so this is a learning experience for the both of us. It will be temporary though. We are learning how to eat a low sugar diet along with a low sodium diet.  Basically, its a cardboard diet, (hahaha).

Today, while at Loma Linda giving up some blood, we returned all the LVAD equipment.  For me it was kinda weird but a good feeling.  I was just getting used to Russ being on all the equipment and now he is all on his own.  WOW, is all I can say.  This has been a very unique experience.

We both looking forward to sharing with you all our experience with this new heart.  There will be alot going on for the first 6-12 months.  Hope you join us.....

Thanks,
AuraLee

Feeling Good

Hello all it's Russ, just wanted to say hello. All is well with the recovery so far.

Friday the 13th (lucky day)

The day we got the call we were meeting up with a couple that has been through what we were experiencing. Rich and Carmen, Rich had been an LVAD recepient and Carmen was the caregiver. I had never met either, while Russ was meeting Carmen for the first time.  Just before walking in the restaurant Rich says " wouldn't it be great if you got the call while here at lunch with us".  We ordered, sat down, no sooner after I got in two bites of my salad my cell rang.  Our transplant coordinator was on the other end, cant remember what she said but I responded with "is it time?" and to my surprise she said yes.  Told us to get in asap.

We got there, and he was prepped.  Went down for surgery about 6ish.  Surgery started at 7:37pm and Russ was back in his room by 4:30am on Saturday.

After a few days and some speed bumps, he is doing great.  He has had the first heart biopsy on Jan 23 and all looked good.  He is not rejecting the heart, yahoo.

So now we are waiting to see when he comes home.......