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Jim's Journey
June 2006 Ryan is my 24 year old stepson. He got Good Pastures Syndrome, a very rare disease where your own body makes antibodies and attacks your kidneys, lungs or both. Ryan was lucky it only took his kidneys. They were gone after 10 days of a high fever. Then we almost lost him, but Dr. Schrader (an excellent doctor) immediately took his kidney tissue shipped it off and the next day they knew what he had. She moved him to another hospital started treatment, dialysis, and blood transfusions. Our lives were turned upside down in a matter of days. For Ryan it was survival mode and for the next month or so it was touch and go.
He was on so many drugs at one time I think about 20 pills a day. The medicine was making him sick and his hair started falling out. He was sick and throwing up every day he was on the dialysis machine. He lost allot of weight and most of his hair. Right after we got him home Pastor Doug came to the house and Ryan was baptized. He couldn’t go out and was still very sick. My Men’s Group came over and we laid hands on Ryan, it was a very emotional ceremony for everyone. It was a long 4 months and then they switched him over to PD, another form of at home dialysis. His body quit making the anitbodies in Dec 2006. If his blood tests stay clean for 6 months means he is eligible for a transplant. June 2007 will be 6 months. Wednesday April 11, 2007. Joanne (my wife), Ryan (my stepson) and I all went to Methodist Hospital for the day to see if Ryan could get a kidney transplant. So here we are almost a year later meeting with the pre-transplant coordinator that was assigned to us (little did I know at this time she would become my coordinator) and filled out some paperwork. They asked if anyone was willing to be tested as a donor, so Joanne and I filled out the paperwork. Joanne had cancer last year so they informed her that she could not be a donor.Then a transplant doctor did a presentation on how the procedure worked, waiting times were about 1-5 years once you got on the list. A live donor kidney could last up to 30 years! A cadaver’s kidney may last 20 years at best. Also a live donor kidney has a better chance of not being rejected. You see even if you donate a kidney, there is still a chance of rejection. A live donor kidney has a failure rate of 5-15% in the first 5 years. Then the doctor described the procedure for the donor and for the recipient. Surgery can take up to 4 hours and they are always on call. They have a new procedure called laparoscopy that is less evasive surgery. The old procedure they cut into your back. They now go through the front with camera’s and disconnect everything, then do a cut by your navel and reach in and remove the kidney and then they put it right into the recipient, who’s in the next room so its working within minutes, that’s why the success rate is so much better. Ryan will be on anti rejection medicine as long as the kidney is working. They have to get this adjusted just right and this can take some time. He will be in the hospital for a week so they can monitor him, then he will be at home and need lots of help for 6-8 weeks after, his kidney transplant if successful will begin working immediately. In fact right after they hook up his vein and aorta, if they take the forceps off the urethra tube they can see the kidney working before they close him up! This meeting with the transplant doctor was very informative, he answered everyone’s questions (their were about 10 other people in the room). Even the tough ones about survival rates for donors and recipients. If Ryan could get on the list and we get a call that they have a match, he would have to get to the hospital within 3 hours or so. The doctors that do the transplants are always on call and as you can see many people are involved in this process. Oh yea, there is a 1-2% chance of not making it off the table. We spoke with one gentleman who has had one transplant and it failed so he was waiting for his second transplant….it had been 5 years. Then we meet with some of the other doctors and since I had filled out the paperwork to be a donor Ryan and I went and had some blood work done. That was it for me. Ryan had to do TB test, Chest x-ray and Kidney scan. The doctor ask him if he was smoking he said yes, the doctor said you should quit before the operation, Ryan said he would try. I was done for the day and didn’t give my blood test much thought after that. Thursday, April 26th, 2007 My cell phone rings and it’s the kidney transplant coordinator, she tells me that I’m a match and asks me if I want to proceed. I was shopping at Cosco and was stunned. My emotions were all over the board, excitement, scared, anxious, can this really be happening? She said if you want to proceed the next step is more testing, but first she asked if I was the only donor for Ryan and if Ryan wanted to take this step or stay on PD (type of Dialysis). I said at first I was ready to proceed but was not sure if anyone else was going to get tested, so I told her I would check with Joanne and get back with her. I called Joanne immediately and gave her the good news. She said no one else had come forward so we decided to talk to Ryan to make sure he wanted to go ahead. He said he was ready. That Sunday in church (I keep replaying this in my mind), I sat there questioning whether to donate a kidney or not, What if I die? What about the people that work with me at my company? What would Chelsea (18) and Alex (15) do with out their dad? What would Joanne do? Would my life insurance pay if I died? Of course everyone said "well your not going to die" but this is free will here. I was really struggling with the risk…selfishly. Then I thought if this was my child I wouldn’t hesitate to give, but a stepson, who at times challenges me and his mother….why did I hesitate? I sat their in the pew that day and prayed and thought God wouldn’t think this way we are all HIS children. At that moment I knew it was okay to move forward with testing and felt at ease with the kidney donation and the procedure. I was at peace with it and felt if it wasn’t meant to be then something will happen to change it. I got on line and searched for Kidney Donors, what was their journey like? I found a few and read them. All had an underlying theme, no matter what the outcome they would do it again. They all seemed to be fine, no aftereffects, just some new scars God left on their bodies. One lady in Canada gave a kidney to her father, her testing took a year! Mine has taken about a month. She had picture of her scars right after surgery, 4 weeks and 8 weeks. They were bigger than I had thought and reality set in about what my body would look like afterward. I showed them to Joanne, they aren’t pretty. Can you live me looking like this? She said she could, another reality check, my body will never be the same. Monday, April 30, 2007 I called the coordinator back that we meet…she was now MY pre-transplant coordinator, Nancy Duncan. I can call her anytime with any questions. She has been great. I told her we had no other kidney donors coming forward so I was it and ready to proceed. She said more testing; can you come in on Thursday from 11am-4pm for more tests? I forgot to tell you that this is expensive so they only want you to proceed if your serious. I would be meeting with a psychologist, my coordinator, a transplant doctor, take more blood tests, a TB test; Chest X-ray and kidney scan. Testing is scheduled for this Thursday May 3, 2007, wow it’s happening fast. We find out Ryan disease has to be gone for 6 months before the transplant, they tell us it could be as soon as June! Thursday, May 3, 2007 – More Testing Today is National Prayer Day, so Joanne and I attend the Mayors Prayer breakfast held at a local church. What a great way to ease my mind and put me at peace, some quiet time, prayer and a great testimonial from a very brave woman. God’s was present this morning letting me relax before an anxious day of testing. Coincidence? I think not. I stop and pick up a key from Kim a member of my Monday Night Men’s group, the key is on a piece of multicolored braided rope from a Christian Retreat weekend I led, another sign that my brothers are with me today. I hang it so it’s visible in my car. I get to Methodist Hospital and have a business meeting with someone at the hospital, she was very supportive, then my first appointment. The psychologist was very nice she said I have to ask you a few questions (like 3 pages worth)!. A few I will share with you are "Are you selling or being paid for your kidney?" I guess there is a huge black market for body parts in the world. I said no and since it was family and Ryans not "loaded" that definitely wasn’t an issue. Another question was “Do you think the person you are giving your kidney to will take care of it?” I told her I wasn’t sure, it bothers me that Ryan hasn’t quit smoking yet. You would think that if someone was giving you a kidney you wouldn’t do anything before surgery that might affect the operation or the outcome. And Ryan did like to drink before, so I told her I wasn’t sure about that one. I just have to focus on me being healthy and give it the best chance I can. The last question was one that I hadn’t considered, “Are you going to be okay if you go through this procedure and the kidney fails?” What a mind blowing question, you know you try to think positive all the time but the odds are 5-15% will be rejected. It’s disheartening to even think that way but it could happen. It was a very thought provoking 45 minutes. You really have to put your faith on the table and believe the outcome will be the best it can be. I am starting to get hungry but I can’t eat because of my kidney scan in a few hours. I then meet with a different kidney transplant doctor; he knows nothing about my situation, who my donation is for etc. He is here to give me a check up and see if all my vitals are okay. I told him that I work out 3 times a week, do weights and take vitamins. He does the basic testing he said I would be an excellent candidate. He did say no more contact sports afterward. I would take no other medicine and my remaining kidney would take the job of two. I may have a risk of higher blood pressure later, but he said it usually happens to people that have high blood pressure coming anyway. The other risk …a small risk of dying. One more issue he shared with me is that if they can’t do the laparoscopy surgery they will turn me over and go through my back. Recovery will be much longer and painful. If my remaining kidney fails in the future I would get preferential treatment on the list. So their you go, he is laying it all out on the table. The good, the bad and the ugly. He was not in any hurry and wanted me to make sure to ask him any questions that I might have. He wanted ME to make sure I was totally aware of the risk and that this was major surgery. My recovery would be 2-3 days in the hospital then home for 6-8 weeks with no lifting, time for my remaining kidney to work its way up to 100%. Reality is at 49 years of age I have never broken a bone, had surgery, wasn’t on any medication, I work out and take vitamins, he said almost too good of a candidate to be true! Guess it makes sense….when would a doctor see a healthy person? HA! I go and finish the blood work, TB test, then to the chest X-ray, and then the kidney scan. It all went fine and I was done by 3:30pm or so and I went to the cafeteria and got some food. As I sat there I cried. The doctor said I would be a perfect candidate, it was almost surreal and we know that God has his hand in everything. My emotions were again all over the board, I called Joanne to give her the good news..all was a go on my end. I was crying tears of joy, relief, anxiousness and some apprehension; it was a tidal wave of emotion that hit me. Since it was National Prayer Day I told Joanne I would like to go to the church and pray (they had a special prayer service that evening) I ask her to see if Ryan would go too. I hurried home and we got to the service just as it ended, but Pastor Wade and Pastor Heather gave us communion and anointed us with oil – it was one of those moments that you knew you were in HIS presence. We each prayed and after I was done I lost it again, my emotions overflowed in tears of joy, love and faith. What a day this has been! They said they will call us in the next few weeks to schedule the transplant, but Ryan has one more blood test in June he has to take, if its okay it his antibodies have been gone for 6 months and we can proceed.. Thursday, May 24th, 2007 Ryan went in May 23rd and all his other numbers were normal. He sat down with Dr Schrader and he ask all the questions he had on his mind. (Dr. Schrader just had another Good Pasture patient, early 30’s they had gotten the disease in the lungs and they only lasted 2 months.)She said Ryan is a walking miracle. I’m not sure if he realizes how lucky he is. She told him the anti rejection medicine can cause cancer in some of the patients. She still said his quality of life will be much better even with the risk. So I’m sure Ryan has allot on his mind too. A transplant will give him the best chance for a “normal life”. He has seen God working through so many people who have touched his life in the past year. June 2007 will be a year from when all this started, a far cry from death knocking at his door. He has a story; he is on a journey that we don’t know how it’s going to end, but he definitely has a reason to be here and I guess I do too. Our paths have crossed for a reason. I told Ryan my used kidney doesn’t come with a warranty! HA! One more thing I gotta mention, my mom calls and she used to work in a hospital, she said “you’ve never had major surgery before this is really going to hurt!” but let me know when it is so we can come down…..thanks mom I love you too. Sunday June 17, 2007 "Fathers Day" Went to church this morning, gave blood at the Blood Drive, came home and Channel 6 came over to do a story on Father's Day about donating a kidney. I hope that if anyone is considering any type of donation that this may inspire them to take that leap of faith and give someone else the gift of life. Happy Fathers Day to all you "dads" out there! Thursday, June 21, 2007 Ryan goes in for his last blood test. He will be 6 months disease free after this test. If its good then we can schedule the surgery. My coordinator said surgery would be 4-6 weeks out, so maybe late July or early August. Ryan and I are getting excited about "getting it done" so he can go on with his life. He is trying to register at IUPUI this fall, but not sure on his recovery time. July 17, 2007 Ryan had his blood tests all came back great except for his red blood cell count was high. He was actually taking a shot to increase his red blood cell count, so he has discontinued the shot and we are waiting for the red blood cell count to stablize. Mentally I am ready to go, but we are not working on my time, so I throw myself into my work and learn to be patient. I think we are both a little anxious at this point but have to realize we can't rush anything. So we wait..... August 2007 - A DATE IS SET!! Ryan gets a call about his wisdom teeth, they want him to have them pulled. So we schedule it they have surgery and the oral surgeon said he has the hardest teeth he has ever seen! His teeth are great and has never had a problem, but if he has to have this surgery later, it could be a problem, so he had it done. Patience... I got a call from Nancy Duncan my kidney coordinator, are you ready for your colonospy? Sure when can we do it? Lets get it done, August 20 scheduled - done, results are fine. Another call from Nancy, the doctor looked at my age (soon to be 50) and requested a "stress echo test" EKG, something about the treadmill test. August 28 Stress test scheduled. They inject some dye and on a screen I could watch it pump across my heart pretty cool. I get a Heart scan with my heart at rest they hook up patches put me on a treadmill, get my heart rate up, injection, printout, another heart scan. Done. I couldn't eat that morning so its about 1:00pm and I head to the lunchroom at Methodist for a bite to eat. My cell phone rings, they want another heart scan. So I go back up they slow the scan down and its another 25 minutes (i took a nap this time). Everyone was really nice that day, I was finsihed by 3:00pm and stopped up to see Nancy my coordinator. I ask her how Ryans blood test had gone (he had bloodwork done the week before) IT WAS FINALLY OK! She said if my tests today were good we could schedule!! Hooray. She gave me a new DVD for Kidney Donors to watch that was just recorded in 2007. August 30th in the morning, I get a call from Nancy, THE DATE IS SET FOR TUESDAY OCTOBER 9th!!! I just got home from racketball and I told Joanne the good news, we shared a hug and are so thankful to get to this point. Ryan was at an appointment oddly enough with his nephrologist (kidney specialist-Dr. Schrader) and he got the news also. Ryan is walking around with a little more "jump" in his step! We just both need to stay healthy for the next month. Ryan's surgeon is Dr. Haag and I get to meet my surgeon and urologist on friday Oct 7th. We have to be at the Methodist Hospital at 5:30am on Tuesday morning, so they would like us to stay downtown, somewhere close -we can't be late. September 3, 2007 - Memorial Day So much to be thankful for. Our health, our family, our freedoms, our country we are so blessed. I put us in the prayer chain at Bethel Lutheran Chruch in Noblesville this past sunday, God has blessed us with a chance for a better life for Ryan, wow. My mind has been racing since we set the date, I have to get things lined up and ready at work, home, physically and mentally. So today I watched the new Kidney Donor video, surgery will take about 4-5 hours, 2-3 hours in recovery, 1-3 days in the hospital (as long as there are no complications). Home for recovery, 6-8 weeks, no driving for 2 weeks. Risks - dying- 1%, bleeding or infections 2-3% so all in all we are a go! Ryan's is kidney acceptance, with a live donor the first year's rejection is only 5%, the first 5-10 years it can be as high as 20%. If it was a cadiver donor the failure rate doubles. It also depends on how long he has been on dialysis, the shorter the better. Dialysis takes its toll on your body and eventually weakens it. So we are in God's hands now, to guide the surgeons, for kidney acceptance and recovery and a normal life for Ryan. I am excited, anxious and nervous that we have a date. I have allot of things to prepare and I need to write some letters to some special people in my life just in case. I just finished Tony Dungy's book, "Quiet Strength" and I found comfort with this verse he quoted on page 197. This verse is for you Ryan. "For I know the plans I have for you," says the Lord. "They are plans for good and not for disaster, to give you a future and a hope." Jeremiah 29:11 Friday October 5, 2007 Last Doctor Visit Ryan and I both went in early Friday, another blood test, EKG and Chest X-ray, then we met with another kidney doctor for Ryans care after surgery. Then we watched a movie on Laposcropic surgery. Then Joanne and I went to meet with my urologist. He gave it to us straight up, all the risks one more time just to make sure I was aware of the seriousness of the procedure. Also both of my kidneys have two ateries connected to my kidneys so the procedure will be a "challeging one". Most people only have one. Basically one more thing to disconnect and also one more risk. They did tell me they are going to take my left kidney, I was wondering about that you know, which one it would be. So he said "sometimes after this talk people change their mind, do you still want to do this?" I firmly believe this was all meant to be, we have excellent surgeons, so I am ready to go. My faith is guiding me, my trust is with thee. Monday Ocotober 8, 2007 Pastor Doug at Bethel Lutheran Chruch is going to have prayer service for Ryan and I from 7-7:30pm. I am always in awe of God's awesome presence. The Holy Spirit is so thick you can feel it. You know its allot easier to give than recieve. I am so humbled by the prayers we have received by all the prayer groups and prayer chains across the country. I can't tell you how much peace this gives me knowing that you are lifting us up. Thank you for caring. Hey, God is in control, his presence, his healing power and his love shown by all of you is grace filled. Thanks for being a becon of his light for us at this time in our lives. Tuesday October 9th - Surgery Day Surgery is at: Clairan Health, Methodist Transplant Center, I65 at 21st Street and Captial St. Indianapolis, IN 46206. If you are coming to visit park in Garage 1. We will be in Bldg A. Ryan, myself and Joanne are staying across the street from Methodist Hospital in a hotel Monday night. We have to check in at 5:00am Tuesday. I go in first and they pump me full of fluids to clean out my kidneys. I get to meet my anesthesiologist then they put me out, my surgery starts at 7:30am. Ryan will start about 1/2 hour behind me and goes in at 8:00am. Surgery will take about 3-4 hours, 2 hrs in recovery then if all goes well we will be in our rooms. Thank you Pastor Doug Gast for coming in early to pray with Joanne, myself and Ryan. Next entry will be after I get back home. My plan is to stay on this side of the dirt!! (just a little humor from my friend Carl W.) ........ Please pray for a succesful surgery and a successful transplant. Gods' Peace...... jim h October 13, 2007
I came back to the hospital to visit Ryan 4 days after Surgery, Saturday October 13, 2007. Ryan got out the next day on Sunday October 14, 2007. That was fast! October 15, 2007- WOW Surgery was a success! I came home 2 days after surgery, Ryan came home 5 days after surgery. Our Clarion Health Transplant team at Methodist Hospital was great as was the staff. Its almost surreal thats its done. Surgery was about 3 hours for me, Ryan a little longer. Day 2 they had me get up and walk, it was painful, but they have good drugs, HA! Ryan's kidney is working great, he had a high temperature Day 2, then his blood pressure shot the next day. He started his antirejection meds that he has to take twice a day. BUT NO more Dialysis. - YEA! We are both tired, up walking every day. Ryan has to track his temp, blood pressure, water intake and outtake. He will be taking all his info to Methodist so they can monitor him for the next few months. About 80% of transplants reciepients body's try to reject the kidney. They have to adjust his meds as they see things happening in his body. So far so good, so we are estatic and tired taking recovery day to day. I have 6-8 weeks then my one kidney will pick up the work of two. Then I am good to go. Ryan has a lifetime of tracking and taking his medicine, but he has his life back, his color, his energy, his spirt and dreams. The most asked question I get is, "Would you do again knowing what you know now?" NO DOUBT ABOUT IT, YES. If you are considering of any type of organ donation I encourage you to get all your questions answered. It's a very rewarding experience, one that will change your outlook on life forever. If you have any questions please give me a call on my cell at 317-431-2022 or email me at Jim Hogle. January 10, 2008 Happy New Year and time for an update. Ryan meds have been adjusted quite a few times but they say thats normal unitl they get them dialed in. The only side effect so far is insomonia, the meds are keeping him awake. Hopefully this will subside as time goes on and he gets into his daily routine. Ryan started back to IUPUI this week and is seeking some part time employment. His energy and motivation are back. Its really hard to believe. We are so blessed. The doctors gave me clearance after 7 weeks to get back in the gym and retrun to my normal racketball and weight schedule, I feel fine, am on no medications and have my strength back. Our Christmas was different this year, no big gifts after all we had already received them in October with successful surgery and the kidney being accepted by Ryan's body. WHAT A GIFT!! It will be hard to top that one. So with our ongoing daily health we are thankful after a year and a half of trials and rejoicing. Peace be with all of you in 2008! February 20, 2010Ryan has been attending IUPUI and got accepted into the Kelly School of Business!. He should graduate in June or July with his accounting degree (maybe a double major) and is looking forward to gettinga job. The only side effect still is insomonia, the meds are keeping him awake. We are so proud of him and the journey he has been on has been a real challenge. We are glad his can now get on with his life and make his dreams come true! Its been 2 years already and I am back into my regular workout routine and all systems are working just like they always did.nbsp; So if you decide to travel down this road someday, it is very rewarding and I feel blessed to have had the opportunity to make such a differnce in someones life.nbsp; So with our ongoing daily health we are thankful after a two plus years since the surgery that all is well. Peace be with all of you in 2010! If you would like me to share my experience at your church, hospital or organization, please call me to schedule. God had his hand in many aspects of our journey and I am happy to share them. Our family would like to thank all of you that have sent cards, emails and dinners to our home during recovery. We are in awe of HIS love, grace and mercy. We are blessed no matter what the outcome in the future, from me being a match to this day of joy and recovery. Every day is a gift, don't waste it. We seem to take them for granted. If you need a realtiy check go to a hospital, spend some time with someone ill or waiting for a transplant. Do something you love, and don't forget to smell the roses. During this journey of life it is in giving that you receive. God Bless, Jim Hogle
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An average 17 people die each day waiting for a life saving transplant. |
My name is Jim Hogle. I am the Executive Director of the USCCRA, the US Consumner Credit Restoration Association. Thank you for taking the time to visit our website. I feel that it is our human nature to share inspiration with others. I hope my story may move others to take action or just to help others for it is in giving that we recieve. I will be updating this page as events occur. My story may seem long but I wanted to include my feelings at those moments, especially for those who may be considering an organ donation. Thanks to all of you that have been so supportive in my journey and especially for your prayers.
