The Halpern Family
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OUR EXPERIENCES WHILE WAITING FOR A KIDNEY Years ago when I first met my husband I never thought for a second that we would end up marrying each other, but we did and that’s another story. Now that we are married, I wouldn’t change it for anything in this world. We took a vow and when we said the words, “In Sickness and In Health” we strongly believed in and are living according to those words today. My husband, Irv, has a zest for life. He likes to have fun and laughter around him all the time. He’s always volunteering us for something. At times, I don’t even participate, but he does. Although we are not that fortunate, he’s a firm believer in helping others less fortunate and giving back. Maybe that’s why I love him so much. He’s my Irvy. For quite some time now, Irv has been in the dumps and pre-occupied to the point where he’s not as outgoing and fun as before. Although I support him and completely understand his demeanor, I wish there was something I could do to change him back to the fun loving, belly laughing Irvy he used to be. Here’s our story. Irv has been a diabetic for over 20 years and as a result of that, his kidneys are failing and he’s in need of a kidney transplant. At first, we thought ok, just another one of life’s little hurdles. Together we can beat this. We were so confident that as soon as we made his health issue public to our friends and our family he would have no problem finding a donor. No, forgive me, not only were we confident, we were overly confident that someone would definitely come forward. Asking someone to give you a kidney is not an easy thing. It’s unlike anything else one could ask from another being. So Irv and I struggled and debated on how to best go about it. Irv decided that instead of putting people in an awkward position we would simply send a letter of information to all our friends and family. Here’s the letter we sent: July 14, 2003 Dear Family & Friends: I know by now most of you are aware of Irv’s health condition, but I’ll briefly give you an update. Irv has been diabetic for about 20 years and as a result of this, his kidneys are not functioning at the level they should - as such, they are failing. This means he will need a kidney transplant very soon. We have been to the Transplantation Seminar at St. Barnabas and have met the doctors, coordinators and other staff in preparation for the surgery. Irv also has a series of other doctors with whom we are constantly doing follow up visits and a few medical procedures to make sure his health remains stable until we get a suitable donor and can proceed with the transplant. As time is not on our side we are praying that there is a Good Samaritan somewhere out there to give Irv the Gift of Life. If you, or anyone you know, is interested in assisting in any way possible, please feel free to give us a call. Remember that your help can be in any form; even a prayer will be appreciated. The enclosed form is for anyone who’s interested in being a donor or learning more about the process. You can also call St. Barnabas and speak with our Coordinators, Doreen at (973)322-5938 or Patti at (973)322-5646. We hope you are not offended by this gesture and please know you are in no way obligated. Thank you for your time and any consideration and we are asking that you keep Irv and our family constantly in your prayers. Sincerely, That was it, - no demands, no expectations. Well after the letter went out we were relieved we sent it and were excited with the anticipation of people calling to offer their support and wish Irv well. I also guess that secretly in our hearts we were kind of hoping for a family member or close friend to offer to be Irv’s donor. And if not to donate, then we would gladly welcome a chance to talk about it and accept any gesture of support. Well, guess what? We are still waiting for those calls. We are really upset about it, especially Irv – although he hasn’t said it – I know he is. I think we are more disappointed than upset. Disappointed, that although Irv has three siblings, two of who would be a possible match, they still have not broached the subject. Instead, they avoid it and us like we have the plague. Not to be totally disheartened, we truly appreciated the calls we did receive from friends who would donate if they could, but we know they have their own health issues to deal with as well. Disappointed, that although Irv has many friends from his 20+ years working in a Law Enforcement capacity, forming life long friendships and through his years of charity work as President and a member of the Blue Knights Law Enforcement Organization, not one person from those affiliations has come forward. So yes, we are extremely disappointed. But we continue with hope and prayers that there really is a Good Samaritan out there. Disappointed, that our telephone does not ring as much as it did before. I guess people are afraid we have the kooties and they might catch it. Seriously, I don’t know what they think. Maybe they want to call us but find it awkward or they might think we’re going to get them on the phone and demand their kidney. Whatever their reasons, we are, once again, very disappointed. I guess in times of illness, people change and we each deal with it in our own way. We have decided that it’s time to actively pursue a transplant, but it’s like a race against time. Irv hope to have the operation completed before he needs dialysis. The journey is not an easy one. It’s grueling and frustration at times. Especially so for Irv, as it limits his lifestyle. Irv’s days consists of checking his blood sugar at least twice per day. If his blood sugar drops too low he can go into shock and/or pass out. He also self-administers Insulin injections daily. These injections are necessary as they are doing the work of his pancreas. As his kidney functions decline, the kidneys produce less and less Erythropoietin, a hormone that aids in the production of red blood cells (RBC). As the level of RBC declines, fatigue and anemia set in, leaving him constantly tired. So now he self-administers Procrit injections (a synthetic version of Erythropoietin) once per week and swallows approximately 20 – 40 pills per day. But we continue to move on with hope and prayers. Besides, the medication and the Transplant Team at the hospital, Irv also sees as many as 4 – 5 other physicians monthly. There are doctors monitoring his kidneys, his Red Blood Count and Creatinine Level, (a measure of kidney function) others monitor his heart, while some try to repair the wear and tear his body is currently undergoing as a result of kidney failure. Before Irv can have the transplant surgery, he has to be as healthy as possible so he had to undergo a series of tests. This was to ensure there were no other medical problems that would have to be addressed before the surgery. One of the many tests done was an Echocardiogram. An Echocardiogram is a record of the echo produced when ultrasonic sound waves are reflected from the heart. Analysis of the echo pattern can aid in the diagnosis of heart disorders, such as fluid around the heart or valve abnormalities. Then there is the Electrocardiogram (EKG) where several electrodes were placed around the heart, arms and legs and is designed to measure the electric currents that the heart uses to stimulate its muscles during every beat. Heart damage or disease changes the pattern of an EKG in different ways. As a result of a Stress Test, Irv’s Cardiologists saw an abnormality in his heart, which had to be corrected prior to transplant surgery. So, since he did not pass all his tests and had to have a Cath, we spent several days in the hospital. This is usually an out-patient procedure but because of his kidneys, he had to check in a day prior to be prepped and have his kidneys hydrated with fluids via IV. As The Cardiac Catherization, or Coronary Angiogram procedure involves the use of X-rays and dye for the visualization of structures within the heart. The heart valves and chambers, heart muscle, and the coronary arteries are displayed during this procedure. A small tube is inserted into an artery, usually in the groin area. Through this tube fine catheters are threaded up through the vessel until they are positioned in the heart. Once in position, the cardiologist may inject dye and record the images with specialized digital X-ray equipment. The procedure takes approximately 1-2 hours. The blockage they found was minimal enough and required no removal of the plaque. After the procedure, although bruised and exhausted, I saw a great sense of relief in Irv’s eyes. However, Irv was not out of the woods yet because he had to stay an extra day in the hospital to make sure his kidneys were hydrated properly and since the dye used during this procedure was known to cause additional damages to the already failing kidneys, he had to undergo yet another series of blood test. Thank God, there were no additional damages so Irv got to go home the next day. Recovery from the Cath was fast, but limited. I played chauffeur, as Irv was not allowed to drive, I ran errands, as Irv was not allowed to use stairs or do a lot of walking. Still, he recovered nicely with a few bruises to show for it. Next Hurdle..Although he has had several laser eye procedures, capillaries in Irv’s retina were bleeding, causing blurred vision – another side effect of a failing kidney. Irv’s sight is deteriorating and he needs corrective surgery so there was no hesitation. Within a week after the Cath procedure, we were back for yet another surgery. Although this improved his sight some, it’s still not 20/20, but we are grateful he can see. He’s still recovering from that and along with the other medications, he is now using steroid eye drops for the next month or so. We know this is a long hard journey, but with the help of God and knowing that there still are good generous people out there, we know Irv will make it. We know that someone, somewhere, will come to Irv’s aid. Well you know, this Belief is all we have and we refuse to stop believing in the goodness of people because friends and family disappointed us. All kinds of people make up this world – like the good people. I think the hardest of Irv’s illness is keeping up with our 12-year-old son. Our son is an active child who plays basketball for his school and baseball for a local little league team. He a rough and tumble child who likes to wrestle Irv to the ground and do boyish things like that. I see the despair in Irv’s eyes when he can’t actively participate in these activities because he tires so quickly. I see his frustration when he can’t shoot hoops or toss a baseball around with our son. I see it and it hurts, it really hurts. When his kidneys fail, they lose their ability to cleanse his blood so all the impurities and toxins starts to pile up, which leaves Irv feeling extremely ill all the time. He wakes up feeling nauseated and is always exhausted. Irv, however, never gives up. He found a past time that they can both enjoy. Fishing! I never thought in a million years that our busy body city kid would like fishing so I told Irv not to invest too much money in fishing because our son might not have the patience for it. I wasn’t really wrong because at first, our son was afraid to bait his own hook. He hated the worms and he hated bugs, but when he saw the fish biting Irv’s lines, oh boy - his competitive edge took over and he wanted to catch more fish than Irv. So now, he baits his own hook (although sometimes he uses work gloves to do it). It’s fun to see them in their fisherman get up, tackle boxes and poles going fishing. I know Irv enjoys it and I like the fact that fishing is something they can do together. Our intentions of this inside look at our experiences are to help other patients and families better understand what may be ahead for them on the kidney failure road and to demystify the transplant process. Although, I must say that I have heard some heart warming stories which goes to show that some people do care. Then again, I am guess I’m writing this piece as an appeal for help and also as a form of therapy for me. I recently began a photo documentary of Irv’s numerous visits to hospitals and doctors, which I would like to share with you. So if you’re interested in seeing them or if you have any words of encouragement or advice, please do not hesitate to contact us. You can send us an e-mail @ Thehalpernfamily@aol.com We are praying and we know that someone will give Irv the Gift of Life, but while we wait, we would also appreciate it if you can keep praying for Irv to be as healthy and as strong as possible when our prayers have been answered and it’s time for the transplantation. Thank your for extending your hearts and ears to us. Sincerely Thehalpernfamily