Linda, thank you for your inquiry. Joel continues to do well lung wise. His lung function is at about 40%. That is stable, and it is all we can ask for. He continues to have problems that are related to the medication that is required to avoid organ rejection. He has severe neuropathy in his feet, which makes it very painful for him to walk. He als has neuropathy/burning mouth syndrome, which makes his mouth burn all of the time and he is unable to taste most foods. This burning mouth syndrome is exagerated by anything to citric, carbonated, spicy, salty, etc. So that is quite uncomfortable. He has chronic pain issues related to his multiple incisions in his chest cavity from both transplants. However, despite all of these challenges, he keeps a smile on his face, and tries to stay positive. We are still living in Houston Texas.
We thought we would put an update on this page, since we do still see some activity.
Joel and I moved permanently to Houston, Texas March, 2011. It was easier this way than for me to fly back and forth to Chicago to work. It was also easier than expecting us to drop everything and fly or drive to Houston whenever Joel had an issue with his health, and every three months to be followed in clinic.
So we've moved here permanently, and I am a RN, and I've gotten a job here.
Joel's health has been okay, with some issues all along the way. In transplant, you are NEVER "out of the woods" per se. We've had episodes of rejection, infection, kidneys being damaged by medicines, and neuropathy in Joel's feet in which his mobility is largely affected.
But we're still keeping our heads above water, and trying to keep a smile on our faces, because we are so very grateful that Joel is still here. A little over a year ago, we were afraid Joel would not survive.
Thank you all for your generous support, donations, and prayers.....it has meant so much.
I am doing very well...this has been a very hectic few weeks. I had transplant clinic on February 22, in which I got some good reports.
First and foremost, my lung function is very stable. The doctors are impressed at how high my lung function is with the one new lung (around 55% give or take).
Second, my white blood cell count is still low, but is continuing to climb very slowly. Thankfully, with being very careful, I have not caught any illnesses.
Finally, unfortunately, my cholesterol has been high two months in a row, and I have been started on a medication to help lower it. This is a combination of some of the meds causing high cholesterol, as well as trying to eat whatever to maintain/gain weight.
My weight is up to 120 pounds. This is huge since I started at 108 pounds. So I'm not too worried about the cholesterol issue.
Lastly, Jodi & I decided that we like Houston. We've always wanted to live somewhere warm, and this fits the bill. Also, we can stay close to the Texas Medical Center for my care. I was going to be released soon to go back to Indiana, but we would need to return to Houston every three months for the next few years. So we decided that it was time to relocate permanently.
Jodi finished her job in Chicago on February 26, and finished up loose ends that week she was there. She will start her new job on March 7 at St. Luke's Episcopal in the Cardiovascular ICU/Recovery Unit.
We moved into our "own" new apartment Thursday, and we love it. It is sparse (no furniture to speak of except a few camp chairs and a bed), but it is ours. We are on the 25th floor and have the most wonderful view of the Texas Medical Center campus and Hermann Park. The cats are adjusting as well.
We want to thank everyone for your continued prayers, and also for the financial support that we have received. Without all of it, we would not have gotten this far.
Please continue to pray for us, as you all know, transplant is an ongoing process, there is never a time we are "out of the woods" so to speak.
Here is our new info, feel free to call or drop a line!!!
Love, Joel & Jodi
5927 Almeda Road, #22513
Houston, Texas 77004
312-933-6764 Jodi Cell
312-933-6913 Joel Cell
Joel is doing very well and had his 12 week transplant clinic and testing over the last few weeks.
Things are progressing well, with the exception of a few hiccups.
Joel's white blood cell count continues to be low (1-2) despite being off of the Cellcept (rejection medication) for the last month. This makes him very predisposed to infection. After labs were repeated today, his WBC was still 1, so we went to the infusion clinic this afternoon to get a subcutaneous injection of Neupogen. This medication helps stimulate the bone marrow to create white blood cells. So hopefully this works as it will help Joel's body fight any infections, and also get more energy!!
Joel also had a bronchoscopy. (scope sent down into his lungs). Biopsies were taken of tissue, and there is NO rejection. However, Pseudomonas did show up in the culture. He is not having any major symptoms with the exception of a dry cough that is persistent, pain in his left lung, and a decrease in his home spirometry. So after a week of feeling "generally unwell" and a low WBC count, the transplant physicians prescribed an oral antibiotic. Hopefully this will work.
Joel had two moles removed last month. The biopsy results showed that they are both "abnormal nevi". This means that these moles were on their way to being a form of skin cancer. Tomorrow Joel will see the dermatologist/surgeon and she will excise the skin around those areas to hopefully remove any abnormal cells that could pose a problem later.
Joel continues to go to pulmonary rehab, and they are increasing the weights that he can use for his therapy. They also play Wii bowling and tennis as part of his therapy. I think they are having a good "social hour"!!!
Joel returns to transplant clinic on February 22, and will have many tests that day.
We thank you so very much for the continued thoughts and prayers as we wouldn't be here without them!!!
Well I went to Transplant clinic on Tuesday, as well as the Hepatologist (Liver Specialist), and the Dermatologist on Wednesday. So it has been a full week.
Things are progressing well. The rejection medication levels seem to be leveling out, however, they are drawing labs frequently to make sure the fluctuations are not there.
As far as the stomach pain, they have discontinued the medication I was trying for that, and are trying another. It is called Dom Peridone (too bad it isn't the champagne, because it costs almost as much!!!) It is not FDA approved in the US yet, but somehow they are able to prescribe it, and we have to get it from a "compounding pharmacy", so of course without FDA approval, that means no coverage by the insurance. Oh well, let's hope it works. If after 2 weeks the stomach symptoms persist, then an endoscopy will be the next step.
Pain still persists but fortunately I have some pain medication prescribed. I don't know how long that will continue. Dr. Seethamraju said he thinks that the pain might be persisting because of bone/muscle pain and because I'm so thin still. So the prescription was for me to gain weight (which I'm trying to do) and to eat as much "Blue Bell" ice cream as possible.
It turns out that some of the labs for the donor showed that they were "exposed" to Hepatitis B at some time, but that there was NOT an active infection of Hepatitis B. We have known this since the week I got home from the hospital, so I had a Hepatitis B Immunoglobulin infusion, and have been taking prophylactic oral meds for Hepatitis B infection since. Even though I had the Hepatitis vaccination twice, my body is not reactive to it, so there is concern to avoid infection with Hepatitis and I may have to stay on some sort of oral med for this. The Hepatologist was on the phone with a world renown Hepatitis B specialist while we were there, trying to determine a game plan for me. At this time, I will continue the oral meds, and then have labs done next month for liver/hepatitis and see the Hepatologist again, who will then decide if I should stay on the meds or not.
Two moles were removed and sent for biopsy. We are waiting for those results. An area of concern that I had turned out not to be, but she saw two other areas she was concerned with. Depending on the result we will address whatever needs to be, and if they are negative, then we will return for a follow up visit at the dermatologist every 3 months.
So at this time, we are approaching the 12 week visit for transplant, and there are many tests that go along with that clinic visit. This past Monday was 8 weeks since the transplant.
Jodi will be returning to work next Thursday, January 13, and she will continue to fly back and forth every Wednesday to work 6 shifts in Chicago, then be in Houston for 8 days. She will be doing this until we decide/hear from transplant where things are at.
I continue to go to pulmonary rehab three times a week, and it shows, as my distance for my 6 minute walk is getting longer and longer.
I've made it through one root canal and crown, and have to get through another root canal and crown and an overlay on another tooth next Monday. Hopefully this will end the jaw/facial pain.
Thank you everyone for all of your support and prayers, as we would not be here without them.
Joel is doing well...we are still dealing with fluctuations in his rejection medication levels, so we are trying to get a handle on that.
He is still in a lot of pain, and we were able to get the doctors to renew some pain medication for him.
He continues to have a lot of stomach issues (pain, nausea, etc) and we're not too sure what that is related to, so we are doing many tests.
Unfortunately over the Christmas holiday, Joel had a tooth ache, and after getting into a dentist this past Wednesday, we found that 2 teeth need root canals and crowns, and one needs an overlay (like a crown).
So please keep us in your prayers, and if possible make a last minute 2010 donation to help us out...especially now that we have several thousand to pay in dental bills now.
Joel had transplant clinic this past week, and an enormous amount of labs and blood tests.
Things are looking good, however, we can't seem to get his rejection medications under control. For some reason, his blood levels of these drugs are fluctuating greatly, and he is having a large amount of stomach issues (nausea and stomach pain).
We will repeat labs this Monday, and the physicians will change the medications accordingly.
We will have another bronchoscopy in a few weeks.
Please keep us in your thoughts and prayers as we try to get everything under control.
We aren't sure how much longer we'll have to stay in Houston, but it will be at least a few more months.
We're almost to our goal...please pass our site around to help us reach our goal!!!
Joel had his first clinic appointment since discharge yesterday. Everything is looking very good.
The bronchoscopy from last week does not show any rejection, however, it did show some bacteria (stenatrophomonas maltophilia), so we are starting a 14 day course of two antibiotics to hopefully get rid of that bacteria. He does not have any signs or symptoms of an infection.
On the rejection front, despite the bronchoscopy not showing rejection, the first 3 months of transplant are the "golden window" into hopefully preventing graft failure. Joel's Prograf levels have been fluctuating greatly, and there is no reason for it. His Prednisone dose was increased to 30mg a day, and tomorrow, Joel will have labs drawn, take his meds, then have more labs drawn, to see if his body is processing the Prograf and the Prednisone. If the levels are still low, he will have a Solu-Medrol infusion immediately following the lab results.
The sutures from the chest tubes were removed, and half of the staples. The other half of the staples will be removed tomorrow. So a shower is in Joel's near future!!!
Pain is still an issue, and will continue to be as the healing process continues.
Joel had an evaluation for pulmonary rehab, and will start that tomorrow as well, and will go Monday, Thursday, and Friday every week.
Thank you everyone for keeping us in your thoughts and prayers.
We are still in need of donations to help with our "uncovered medical expenses", so please keep this in mind as we reach year end, and also please forward to others who you might think would be interested.
Support Joel Wright's Uninsured Medical Care for Lung Transplant Fund
Friends and Family,
I'm starting another journey in the hope of getting a second lung transplant. As many of you know, I was born with Cystic Fibrosis, which is a terminal illness affecting the lungs and pancreas. I received my first double lung transplant in October, 2006.
As many of you may or may not know, my lungs are in rejection and failing quickly. I currently have 15 % lung function. After many difficult months of trying to find a center to agree to list me for transplant, that search is finally over. The Methodist Hospital in Houston Texas has agreed to list me for a transplant once Jodi (my wife) and I relocate there. We plan to relocate on October 28, 2010.
Yes, we do have wonderful insurance coverage for the surgery itself. However, the relocation, medications, and day to day things that go along with this relocation are not covered by insurance. At the present time, I will be moving to Houston on my own and waiting for the "call". Unfortunately, Jodi will have to stay in Indiana to continue working to maintain the relocation costs as well as all our other bills for insurance and other living expenses.
When it gets closer to the time that we think I may be called for transplant, Jodi will then take a Leave of Absence from her job. Unfortunately, that is not a "paid" leave of absence. We will have to continue to pay for the health insurance out of our pocket while she is not working, and try to pay the rent in Houston, along with medications, food, travel expenses, etc. We know we have to be in Houston at least 3 months AFTER the surgery, but we are not sure how long overall we will have to stay.
So as you can see, this is going to be very costly. It was quite a financial burden the first time around, but somehow we managed it. We are appealing to you to help us in any way you can, large or small, and appreciate anything that you can do to help us. We are grateful for your thoughts and prayers also.