Re-evaluation appointment at the Kidney transplant center….

Today we went to Robert Wood Johnson Kidney and Heart Transplant Center for Mark’s Annual transplant evaluation.  We got to the Center with no problem. When you go in the middle of the day, the traffic is relatively light. The Center is located in New Brunswick, NJ. For those of you who know this area, it is a city that has limited parking. Luckily they have a nice parking deck right next door, and the facility is modern. It is located on the seventh floor but as you would expect, it has an elevator, and the building is new and very clean.

320 lbs/145 kg

We did not have to wait long before they called us in. The first thing Mark had to do was step on the scale. This is always a bad thing for him since his weight has been a HUGE factor in all of this.  His weight registered at 320 pounds or 145 kilograms. That was completely unacceptable and not conducive with a successful transplant. His blood pressure was also very high. Mark claimed it was because they were using one of the automatic blood pressure monitors, and because he was nervous.

As he was questioned by the staff, I come to find out that Mark is self-medicating AGAIN!!! Grrrr!! He takes his blood pressure medication when he thinks he needs it. I HATE when he does this kind of thing. I understand that dialysis can cause low blood pressure which leaves him feeling weak and crappy, but today was a non-dialysis day so there is no reason he shouldn’t take him medication. Sometimes I just want to smack him upside his head and shriek.

We met with the financial coordinator who went over the medications that will be needed after transplantation. She also discussed the costs and who will be paying for any fees. Since Mark has medicare for all things kidney, they will be the primary carrier, and Aetna (our health insurance) would be secondary and pay the balance. We would have very little costs when it comes to the medications.

Dr. Richard Mann

Dr. Richard Mann

We also met with Dr. Richard Mann (who is a nephrologist,  Associate Professor of Medicine, and Medical Director of the Kidney and Pancreas Transplant Program). He gave us information about the transplant, along with statistics, side effects of the medication, and the schedule for visits after the surgery. Even though we have been through this evaluation before, and I have learned a lot from various sources, I did learn a lot today. I found it very informative and beneficial.

There were other meetings with the staff there such as the dietitian, the social worker, the donor coordinator, and the nurse. Mark had a LOT of vials of blood drawn.

The outcome of this visit? Well, Mark is still on the list accruing “time” for a new kidney, but his staff is inactive until he loses weight and is down to 260 pounds. Mark claims he will lose the weight by the end of July.  We will see about that.

I am hopeful about this, but it’s going to be a long road — even after the transplant. Then it will be visits to the transplant center twice a week, the high doses of meds, the worry of rejection, the extremely compromised immune system, and the avoidance of people, places and germy things. YIKES!!!

But like everything else, I guess we will get through it, huh?

1:30 am….There is a bear in my bed!

I forgot to mention that Mark’s bipap machine for his sleep apnea is sick! The company is coming tomorrow afternoon to replace it.

Sadly though, Mask is snorting, snarfing, and snorting so loud that I had to turn up the music! But even that didn’t down out the noise!

When Mark holds his breathe for too long, I nudge him in the ribs to make him breathe! Welcome to my world!

The Three Year “Anniversary” is upon us…

It’s hard to believe it’s been three years since Dr. Luca DeSimone told us that Mark needed to check himself into the hospital for emergency dialysis. No one told us how difficult this was really going to be and all the obstacles we were going to have to deal with.

Come to think of it, we were told VERY little about what this diagnosis meant for us. No one, not the doctors, nurses, dialysis technicians, or surgeons told us anything about how this was going to change our lives. I’m not sure if it is because every patient/person is different and reacts to and deals with things in a different manner. It could be that the doctors only treat the patient, and most have never had a dialysis session or had a graft inserted into an arm. Most of the doctors have never been married to (or lived with) a person who has kidney failure. Maybe the clinical staff is simply ignorant of what it is really like to live with kidney failure. It’s one thing to treat the condition or know someone who has it, but it is a completely different story when you suffer through it every day of your life.

The last three years have been quite tough for us. Mark has personally dealt with graft surgeries, clotted grafts, major illnesses, dialysis treatments three times a week, doctor visits, and the general feeling of illness just about every day.

I’ve tried to keep our life running as normal as I possibly can. It’s been an uphill battle, that is for sure. I’ve picked up the slack for most of the household chores (mainly because Mark works and has his treatments to deal with…. and because his fatigue makes his energy level very low). Admittedly, it’s often difficult to deal with it all, and still manage to have some semblance of normalcy in my life.

The added responsibilities are not the major issue for me. It is the constant anxiety, worry, and fear that consumes me more than it doesn’t. My brain is on overload most of the time. I juggle appointments for the family, mostly Mark’s doctor visits. Too often I have to completely rearrange my schedule for an emergency appointment. While I am lucky that my schedule and work are flexible, it definitely gets exhausting and tiresome really quickly.

My friend asked me, “how do you deal with that every day?” I didn’t have an answer for him. It is not easy. It is not fun. I’ve often thought of just running away from my life and not looking back. I think that’s a normal reaction, and having spoken with other people who are in my shoes, I am not alone. Thank goodness for that! I’d hate to think I was a horrible person!

This same friend made a comment to me about how hard it must be to live with someone who has a health condition like kidney failure. I’m not sure it’s any different that someone dealing with any other condition such as cancer, Multiple Sclerosis, or Alzheimer’s Disease. In all cases, the future is fragile, doctor visits are the norm, and stress and depression can rear its ugly head.

I still feel that Mark got the short end of the stick in this whole situation. He has to deal with the needles in his arms, the fatigue, and all of the other issues that go along with kidney failure. He feels physically crappy just about every day, but yet he pushes through it for the most part.

On the other hand, while I am relatively healthy, the stress of having a sick husband definitely wears on me. I suffer from erratic sleep patterns (sometimes severe insomnia and other times I just sleep all the time, taking naps at the end of the work day). Some days the stress and anxiety affect me physically. I’ve battled intestinal issues, fatigue, headaches, body aches, and mood swings. It can be hell! I try very hard not to take it out on Mark. This whole situation is no picnic for him either.

I have to admit that sometimes I find it hard not to blame him for all of this. His lifestyle helped to create this situation. He had uncontrolled diabetes for quite a few years because he was in denial and just didn’t want to believe he was diabetic. His weight has been a contributing factor in all of this. He’s always been overweight, and when he goes on a diet, he does a very unhealthy crash diet. His blood pressure has always been high. Even on medication, his pressure was always higher than what is considered normal. His doctors never seemed concerned, so Mark was not concerned.

All three of these lifestyle issues, obesity, high blood pressure, and diabetes, are the biggest contributors to Chronic Kidney Disease. Since he’s lived with these three factors for most of his adult life and never did anything to change them, how can I not believe that he is, at least partially, to blame for his condition?

Of course, he is in denial, and he refuses to believe any of this is his fault. I beg to differ. I’m not perfect, nor am I free of lifestyle choices that contribute to disease, but I do go to my doctor for regular check ups and blood work, and I follow her recommendations, for the most part.

As a dialysis patient, Mark gets a support team to help him through all of this. He has a nephrologist, doctors, nurses and technicians, dietitian, and social worker. The team does their best to keep him on track, keep him motivated, and keep him as healthy as possible.

As a family member of a dialysis patient, I haven’t had the support that I could use to deal with all of this. No one really talks to the family members. If I didn’t go with Mark to his doctor appointments and ask to see his “Dialysis Report Card”, I would be sitting in the dark wondering what the heck was going on.

I remember saying this very same thing when Mark went for his first dialysis treatment at Davita in Perth Amboy. No one let me know what was going on. I just sat in the waiting room for nearly five hours, wondering and worrying. It would have been nice to have someone come out to talk to me and let me know what was going on.

Three years later, I still feel that the family members are neglected. It’s tough because sometimes I feel totally alone, like no one understands what I am going through and dealing with. I could go on and on about this subject, but I won’t. I don’t think the “average Joe” would understand unless he/she has gone or is going through a situation like this.

While I do not suffer from the disease, I still have to live with it every damn day. I can’t ever say this situation is a good one. Some days it’s just hell. But as I have learned, life is not guaranteed to anyone. Actually it is pretty fragile, and in any given moment, it’s gone.

In the big scope of things, I am acutely aware that things could always be worse. I don’t need to go into details, because I KNOW everyone gets that concept. Yet, at the very same time, things can ALWAYS be better.

I’m waiting for the better. I’m hoping for the better. If I have faith, the better days will come, right?

Whoosh…whoosh..goes the graft…

That’s what the graft should feel like when you put your hand on it.  To me, if it feels like water pulsing through a hose, then it is working. When it “thuds” like a heart beat in his arm, that indicates a problem.

Well, the graft is whooshing away again after Dr. DeLaura cleaned it out. According to Mark, who doesn’t always ask questions, the stent was bad and needed to be replaced. They don’t take out the old one but just put a new one inside. At least that is how Mark made it sound. As much as I find going with him to be a time waster for me, I prefer to go because I can ask the questions. I personally would like to know what the procedure entailed, but Mark just cares that it is working.

I’m just glad that they can get it working again. I would not want Mark to have to get a new graft. That would be more surgery, a hospital stay, a catheter in his chest until the graft was ready to use, and more stress for him.

Dr. DeLaura says the graft looks good, and it’s not in need of a replacement. Yet I know how fast things can turn around and take a downhill spin. I remember the bout with sepsis all too well. We are just trying to keep Mark healthy and bide our time until we can get a kidney transplant!

Mark is such a trooper through all of this. I really admire that about him! I’m just glad this little hiccup is over…although sadly, I know this graft will poop out again….but hopefully we can get a few months out of it before that happens!

Thanks Dr. De Leeaura for always doing a great job! And to Alex, the office manager, for going that extra mile!
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Sent from my Droid Bionic at 1:30am… Please excuse any typos or other errors that this phone may have made!

Mark and the graft are fighting again!

So we went to the Access Center on April 21 to get the graft cleaned out. It was clogged but it was taking a long time to clot, and that’s always a sure sign that it is on its way to a shut down! Our regular doctor was not there, so we had another one. He cleaned it all out and thought we were on our way.

Wrong! About a week after having the graft cleaned out, the long bleeding times began again. Mark made an appointment with the access center for May 3rd to get it checked again. His clotting time had increased to about 15 minutes per needle stick. That is about DOUBLE what it normally is when the graft is working fine.

By the time he went to his appointment (two days after making the appointment), the graft had clotted. It was dead as a doornail. Dr. DeLaura cleared it out. He told Mark to cut back on his aspirin as that might be causing the long bleed times. Although he was not sure why it was clotting. Usually when Dr. DeLaura cleans it out, we are good for a month or so… sometimes longer.

Not even a week later, the graft is not “feeling right”. When it runs normally, there is a “whooshing” feeling when you hold your hand to it. It almost feels like water flowing through a garden hose. When the graft is not working properly (usually when it’s starting to clot), you feel a thud thud (like a strong heartbeat). That’s what we were feeling two days after the graft was last cleared. That is definitely not a GOOD sign.

When Mark went to dialysis yesterday, the nurse listened to the graft with a stethoscope, and she felt that there was a clot in the loop part of the graft. They were able to get the needles in so that Mark could have his treatment, but it was not running at “full power”.

So Mark is at Image Guided Surgery as I write. He is there for a consult and a clot clearing. I hope he talks to Dr. DeLaura about why this keeps happening. I am waiting for him to call or text me to let me know what is going on with it. He called me at 11:45 AM to tell me that the car service had gotten him there. He takes the car service so that he can get the “twilight sedation” instead of just the numbing agents. I know his appointment was at 12:30, and he was waiting to be seen. I am hoping to hear from him soon.

It’s very frustrating. I do admire how Mark takes it all in stride and has a “it is what it is” attitude. He really is a trooper through all of this. I am not sure that I would or could be so strong!

Of course, I think all the worst case scenarios. I think the graft has gone bad. I worry that it will get infected and have to be removed. I start to spiral into a world of what ifs, and that is SOOOOO not good!!!

I will be strong… and I will wait for him to call …. and I hope for GOOD NEWS!

Graft clean out….again!

Another Saturday morning at Image Guided Surgery and Aesthetics in Union, NJ.  Mark’s graft has been slow to clot. He went from a six minute clot time to 20-30  minutes. That means two things for him. Firstly it usually indicates that there is a clot in the graft or some sort of blockage. The second thing is that it drags out his treatment time, making it even harder for him. So Mark simply gives Alex a call and he sets Mark up with a Saturday morning appointment.

Dr. Eric DeLaura is not here today. Another doctor will be taking care of Mark. The receptionist and I were talking, and the doctor Mark is seeing is a interventional radiologist just like Dr. DeLaura. The doctors’ name is Dr. Latif.
I like Dr. DeLaura for his personality and his willingness to talk to his patients. Dr. Latif doesn’t know us do he was obviously more quiet. But this office is great. The people are do friendly and they do everything to make you feel at ease.

I’m relatively sure that Dr. Latif will clear the problem, and we will be good to go on with our day.

I don’t really like that the graft continually clots. We do end up getting this thing cleared about every one our two months which its really to often. I think the optimum time is about three months.

At least the doctors are able to clear the clots and it doesn’t need surgical intervention. I used to be very scared when Mark would have graft problems. I just assumed that he would need a replacement or a stay in the hospital. But as we move forward in this journey, I start to realize that in most cases it can be fixed.

This is still a very scary journey for us. But, like other kidney patients and their loved ones, you simply have to take things one day at a time.  The key is proper diet, moderation of fluid intake, regular follow ups with doctors, attending all dialysis treatments, and a good support system.

Mark is not perfect, but for the most part he really does try very hard to manage this condition. I try to support Mark and keep him on track without nagging. It’s fine line for us. We still have our hopes and dreams for the future, but it is difficult to plan because you never know what the future holds.

Of course no one really knows what the future holds. Life can change on a dime. But as I’ve learned, mostly in the past three years, we can only control certain things. I certainly don’t wish kidney failure on anyone, but at least it is manageable. There are conditions that have no treatments. There are organs that cannot be transplanted so I guess we are in the luckier bunch.

After today’s procedure, we are going to run our normal Saturday errands. Then it’s a quiet day tomorrow. It is supposed to be a completely wet and rainy day so it is gonna be a day of cooking, relaxing, and some movies.

I will admit I like Mark being home from work. I enjoy spending time with him so this makes it easier for us. I also enjoy that he can get more rest and therefore feel better. He has been feeling well enough to do stuff around the house…and he had been making me lunch for when I go into the office!

I’m still looking forward to a successful transplant and a fresh start but we are not there yet and the road will be a long one. But I have hope. I still want to grow old with Mark and share a happy retirement together. I would still like my boat and my beach house.

FYI: Mark’s great is all clear and he is eating his tuna sandwich and having his apple juice! We are just about ready to get out of here and start the day.

This blog entry was posted from my Droid Bionic so please excuse the spelling errors and/or mistakes that Swype may have made.

Finally a REALLY good report card!

Yep, it’s me. I’ve been absent again. I know, I always say I will do better, but it just doesn’t happen. I have so much that I want to write, but time is short. Life just always seems to get in the way, and before I know it, time has passed, and I just wonder where it went.

So here’s the latest on our life with Kidney Failure. Mark just got his latest report card. He very willingly HANDED it to me (which is not something that he often does — even when I ask him).

This Report Card was very good, and I am quite proud of Mark for his efforts because I KNOW that this is not easy.

Here’s the scoop….

Albumin was 4.1 (it should be 4.0 or higher)

Hemoglobin was 10.7 (still slightly below normal, but it has been consistently rising from 10.2 to 10.5 and now up again)

Calcium Correct was 9.6 (it should be in the range of 8.4 – 10.2)

Phosphorus (always a problem for him) was 5.4 (should be 3.0 to 5.5). It’s finally in normal range!! Woo hoo!

PTH Intact was 320 (the normal range is 150 – 600)

Potassium was 5.3 (the normal range is 3.5 to 5.5)

URR (measurement of how well the blood is being cleaned) was 66%. It should be above 65%. A little on the low side, but he’s never been extremely high, and the doctor seems pleased with this.

Cholesterol was 127 (the normal range is 100 – 200)

Glucose was 124 (the goal is 80 – 180)

HGB A1C (measure the average blood sugars for the past 2-3 months) was 6.2 (which is what it’s been for the past few months).

And finally………..

Fluid Control was 3.8 kg (should be below 4kg) so his monthly average is actually GOOD!!

I am pleased with this. He obviously was too since he gave me the report willingly. But it’s all good.

Now if we can just get the weight of him. He’s still at 146 kg (which converts to about 321 pounds). That gives him a BMI of 43.50. He needs to be 30 or below for a transplant. They gave him some leeway (at 35 BMI) but he needs to lose about 75 – 80 pounds. I know it’s hard. But he needs to do it.

He decided to take sick leave for the rest of the year. He’s going to concentrate on rest, exercise, and healthy eating. He wants to get on the treadmill, get more sleep (5-6 hours a night has not been working for him), and eat at consistent times with good solid meals. I have no problem with this. Nothing will really change for us. Except that he might get healthier…. and he is home in the evenings (because he’s been requesting an earlier dialysis shift). If this is what he feels he needs, that is fine with me.

I just want him to get the weight off so that when his time comes for a call for a kidney transplant, he is healthy and ready to go.

He just went to see his nephrologist (Dr. Ossama Hozayen) for a checkup and all was well. He goes again in a month. He also saw Dr. Mona Awad while he was there. She was the doctor who recommended the sleep study and ultimately the BiPAP machine.

And speaking of the BiPAP machine, Mark has FINALLY agreed that it is helping him. He says that when he uses it, he does not wake with a headache or a feeling of nausea. I also noticed that he sleeps very peacefully. He doesn’t “kick” and move his legs like he used to do. He also doesn’t wake up gasping for air. He sleeps peacefully and quietly. The machine makes no noise at all. Sometimes I hear the air rushing through the hose, but most times I don’t.

My biggest problem is that when Mark is facing me, the output of air often blows on me. It will dry out my eyes or give me an earache. Sometimes I wake with a stiff neck but I’ve adapted a fix. I put up a barrier between the hose and me. It’s usually a small stuffed bunny, and then I have no problem!

We also had another issue arise. It’s not really health related, but more of an insurance matter. When Mark was first diagnosed with kidney failure, his insurance company required he pay a $35 copay each time he had a treatment. That was about $420 a month. Davita suggested that he get Medicare. We signed up, and the cost was about $125 per month (which is a sliding scale based on our income). Not a problem.

When his employer switched health insurance companies, the new company did NOT require the $35 copay for each treatment. Mark was not required for to pay anything. Only his doctor visits were $5 and his prescriptions were $5, $10 or $15.  We decided that there was no need to continue the medicare, so we cancelled it.

Now after nearly 33 months (GULP!!) of dialysis, the insurance company requires that he obtain medicare as his primary insurance for his ESRD procedures (which include dialysis and transplant). We were worried about the rise in cost. We were told when we cancelled it that when/if we needed to enroll, the price would be higher.

When Mark called Medicare, were told that the monthly cost would be around $100 (which is less than last time). The representative told Mark that it was due to lower costs in medicare by the Obama Administration. Well that was fine with us!!!

We are now getting close to the three year mark of kidney failure and dialysis. It’s hard to believe that it’s been this long. Our life has changed dramatically. In some ways it has changed for the good, but most ways, it has not. The constant stress of this condition is draining – for both of us. I have always lived in a constant state of worry, but this just makes it even more heightened.

I know that a transplant is not the solution. Sure, it will give him a working kidney, but it also will be a whole new set of issues such as rejection, immuno-suppressing meds, and a hectic (first) six months filled with constant doctor visits. Oy!

But all in all, we are hanging in the best way that we can. It’s really all we can do.