Letter October 22, 2011
I thank our Lord for all of you who have continued to send cards and keep me and my family in your prayers. It has been several months since I have written to you about my condition. I am happy to report that our Lord has granted me slow but continual improvement. I have been in the hospital twice since my stem cell transplant in March, once in September and once in October. The stay the first week of September was primary due to a cold, fever and a very mean rash that covered my body. After ruling out infection, the doctors suspect I was having a reaction to an antibiotic that I was taking for a bad sinus and chest cold. My body is still weak fighting infection by itself.
Prior to my stay, I had an outpatient surgery to have a fistula put into my arm. The purpose of the fistula is to provide a safer access for Dialysis. The surgery involved connecting a vein to an artery in my left forearm. Once it matures, gets bigger and the vein/artery gets thicker, they will then use two needles each time I have dialysis to connect me to the filtering machine. I still go to dialysis three times a week for a 3.5 hour session.
My current access or permacath, which is located on my chest, consists of two plastic tubes going under my skin into my jugular vein. Permacaths are meant to be used only a few months because the risk of infection is much higher. Additionally I have to put plastic over it when I shower and I cannot swim with it. It needs to stay dry. These restrictions go away when the nurses start to use my fistula the beginning of November and they remove the permacath.
I also went into hospital short stay for an outpatient transfusion of platelets the beginning of October. My platelets dropped below 19,000 and normal is 100,000. Platelets are essential for clotting and there is a risk of internal bleeding and bruising when they are at these lower levels. Anyway the transfusion boosted me to 40,000. They dropped again to 30,000 and this week they are up to 43,000. This is good, it appears the losing trend has turned to a gaining trend.
Since I am at these low platelet levels I have been holding my Coumadin, blood thinning medication for blood clot, and Revlimed my maintenance chemo. We suspect that the Revlimed taken in August might have impacted the production of blood products, which is what it is supposed to do, but I am not tolerating it well because it is cleared through the kidneys which in my case have failed.
At the moment I am not anxious about holding these medications. Other tests show that light chain ratios, a marker for detecting Primary Amyloidosis (PA), are within normal healthy range. Also I had a bone marrow biopsy the end of June and there was no sign of disease activity. I was told that none of my doctor’s patients have experienced a recurrence of the disease after analogous stem cell treatment. But it is much too early to make a definitive statement since this remedy for PA has only been used for three to four years. I still have a blood clot filter installed in the main vein from my legs to my heart.
I have weekly blood draws to watch my blood chemistry. I am closely monitored since my body without dialysis cannot clear phosphorous or potassium. I have to especially watch the potassium level that can stop the heart. Some of my favorite foods contain potassium such as bananas, tomatoes, oranges, and avocadoes. The food s I must watch for phosphorous are dairy, nuts, chocolate, potatoes, whole grain bread and beer. I can eat them, I just need to keep the portions way down.
I have been back serving the congregation since June. So far, with God’s help, I have been able to do my duties, of leading Sunday Divine Service, two bible studies, two new member classes, youth group, preschool visits, visiting the sick and shut-ins and weekly school chapel. I have learned to conserve my energy by focusing on doing what is necessary and staying away from the rest. Dialysis gives me an opportunity, to study and write sermons, write letters like this one, make phone calls and rest. The congregation has been very understanding and helpful regarding my schedule and giving me time to recover. I am grateful to God for them.
I still have days where I feel that my energy is depleted. I have many days where it is painful to walk. I am still weak from my muscles being starved of protein from the disease. And I still get easily winded when exerting myself. Like St. Paul I have to say that the Lord is my strength. I am amazed at the amount of things, while I am still recovering, that I am able to do.
One good thing is that I am maintaining at 195 lbs. I do not miss the extra weight but some think I am too thin.
I visited USC in September to be evaluated for a Kidney transplant. I am still waiting for my case to be presented. I pray this will happen soon and that I will be placed on the transplant list. I heard for my blood type O, positive, that it may take up to ten years to get a kidney in southern California. If my insurance allows it I will try to list in Tennessee and Florida where the waits are shorter. Nancy has offered herself as a donor to me. She is O negative which will work as long as it is type O. But there are other markers that must match up for this to be allowed. Plus it is a six week recovery time after surgery for both donor and recipient. My insurance currently will cover the expenses of the donor.
Once again I thank you for your prayers. I think you understand what I need if our Lord will grant it.
Yours in Christ,
Rev. Jeff Springer
Thanks for the update. As always, you're in our prayers.
ReplyDelete