Living A Movie For Life


I spoke with my doctor about my immune system issues.  He did check my test results and while I had one recent test that showed my immune system to be too low he wanted to wait until the current test result came back.  Of course that test came back normal so they didn’t change any of my medications that impact my immune system.  I did talk to my doctor about a problem I have been having with urinating and they put me back on Flomax and the problem has since gone away.  I was originally on Flomax after my Transplant but was taken off when I was having some issues with balance/dizziness.  So far I haven’t had any problems but am careful not to get up suddenly, especially when I wake from sleeping.

My doctor also told me that I should be able to go back to work this fall, although he recommends starting with part-time at first and work back in to full-time.   The problem is that I don’t want to relocate, but I am not guaranteed a position with the council I was with prior to disability.  Also I don’t know if they even want me back.  If I leave the BSA I wouldn’t know how to look for a job, I have been with the BSA since 1988 and have no idea how it is done today.   I am not sure what to do.  I like the idea of part-time and will explore that with the SE at my old council.

Some good news is that I am now on a monthly schedule of appointments with the transplant center!  This schedule will continue, basically for the rest of my life.  Hopefully, nothing else will happen causing me to return for more treatments.  This is the same schedule that most transplant recipients are on to get their kidney function checked.  My next appointment is not until the first week of September, due to everyone’s schedule, but if something happens to me I can always get in on an emergency basis or just go to the emergency room if it is a major issue.


This week I went in for my annual Thyroid Ultrasound.  Two years ago I had an issue with my thyroid and had a biopsy done but it was benign.  My thyroid is slightly enlarged so I now do annual thyroid Ultrasounds just to make sure it is still OK.  The nodule they were concerned about last year is still there but has not increased in size.  There is a new nodule in the center but it is not yet big enough to be a concern yet but they will talk with my doctors (GP and Endocrinologist) about this and then I may have another biopsy.  I also need to schedule annual appointments with my cardiologist and ophthalmologist.  I like my cardiologist but anything to do with my eyes freaks me out!  I haven’t been in like a year and a half and can only put it off for so long!


The heat is currently an issue for me, as it is for many.  Since I am feeling a little stronger I am trying to get some things done around the yard but it is tough to work in this heat/humidity we have had the past two weeks.  Prior to that I still had problems with the pneumonia so I wasn’t trying to work in the yard anyway, but now that I can but it is just too hot.  I did get some brushed cleared on some bushes that I hadn’t been able to get to for the past 3 years.  I still have some more to cut but I have started.  I also have killed a bunch of weeds in an area of the yard I am trying to reclaim.  I have also started collecting some rocks from the woods for some stone wall projects I have planned. Last week it was hot but I could work for like forty minutes and then take a break.  It took a while but I was able to get projects done in time.  Now it is so hot that that I am covered in sweat before I can even gather all the tools I will need.  I am hoping that August will provide better wedding so I can get more accomplished.


Meg is off on a trip to West Virginia to see her brother and her sister who is coming up from Houston.  They plan to see what has been done on their mother’s house and make decisions about what still needs to be done so that we can put it on the market.  Originally I was planning to go with her  and on the way back we were planning a couple of days for ourselves with some side trips in West Virginia and Virginia.  Unfortunately at my last doctor visit at the transplant clinic travel was discouraged as I am susceptible to all kinds of bugs/viruses that fester in hotels. I am OK for trips if I’m not staying in a hotel or likely to do mass transit.  I miss not going because I have been traveling to Charleston, WV since like 1980 with my wife and have many great memories of these trips, and once we sell Meg’s family home I don’t know when we will be able to get back to West Virginia.  It is like another major part of my life is coming to an end.


Immune System Issue


It has been four and a half months since my transplant and while I am especially grateful to have had the transplant I am having difficulties getting used to the side effects of the medications I take daily.  I am very concerned over some of the things that have happened that I have no control over.  Specifically my two hospital stays that I have had since my transplant.  Both have been caused by my weakened immune system.  I understand why I have to take the immunosuppressant and cortico steroids that I need to take daily, but the problem is that as a result I am susceptible to all kinds of bugs and infections that, under normal circumstances, my immune system would kick out of my body.  That is what happened with both my parotoid gland issue and my cold that became pneumonia and led to six days in the hospital.  My main concern is that this situation is delaying and/or could prevent my returning to work.  I had hoped to go back to work by the middle of August, which was extremely optimistic, but now I don’t know when/if I will ever make it back.


Yesterday (Tuesday, July 21) I stopped by the Council Office where I used to work and visited with several people I used to work.  It was nice to see people and to be seen as well, but it just makes me want to return to work all the more.  I talked with my Scout Executive in May and he told me that the BSA was looking at a part-time professional position.  He didn’t then have any real details but we talked about how that might be good for me when I return and that we would talk more about this over the summer.  I wasn’t able to talk with him for any length yesterday but plan to get back to him after I see my doctor.   I may have to relocate when I eventually return to work as I can’t guarantee a job at the Council I was with prior to my disability.  My council and my supervisors at the time was very understanding and with the exception of the whole ‘reasonable accommodation’ concept they treated me well, but that does not guarantee a position will be available at the time I am able to return.  If I can’t get ahead of this whole immune system issue, I may not be able to go back into the field with the BSA.  I am sure my Doctors won’t want me camping, visiting program events with hundreds of youth and adults and training courses at council camps are all places where all kinds of bugs/viruses fester.  I may have to leave the BSA and that is very frightening – I have no idea of what else I could do and don’t know how to even look for a job anymore as I’ve been with the BSA since 1988.  I am seeing my nephrologist tomorrow and plan to discuss with him my return to work, as well as my whole immune system problems and if I can get my prescriptions under control.


The summer that started with Carolyn’s return from Spain in late May, followed by Kate’s Wedding in June has only about a month left.  Meg returns to work for the next school year around August 19th and Carolyn returns to Ithaca for her Junior year of College.  Meg and I are hoping to get to West Virginia to see her brother and sister and discuss the sale of Meg’s mothers house.  We are hoping to get a couple of days of vacation on the way and are planning a couple of stops in Virginia and at Shenandoah National Park.  This trip is still tentative for me until I can get the clearance from the Transplant Center.  We also are planning a weekend trip with Carolyn to visit Kate & Kenny in MA and maybe all go to Providence for a Water-Fire Night.  It has been a great summer, if you discount the time I was in the Hospital and recovering from the hospital and some of the oppressive heat, and hopefully this last month will be exciting as well.

Pneumonia Recovery Continues


My pneumonia is slowly going away and I am starting to feel better.  The problem is that I feel better and then I try to do something – cleaning, yard work, exercise etc…. – then I am beat for most of the rest of the day after only a short time exerting myself.  I also seem to be having coughing fits on a frequent basis.  My first one was very scary as it lasted almost an hour and it was very hot and I was dripping with sweat by the time it was over.  As I was home alone without any transportation I kind of freaked out and called the transplant center. After explaining my problem to three different people they got me on with someone who I had seen when I had been in the hospital with pneumonia.  She explained that this is part of the ending of pneumonia that I would cough up the last of the infection that is in my lungs and have to spit it out.   Today (Wednesday 7/15/15) I went back to the gym for the first time and did 40 minutes on the treadmill but after that I had a coughing fit in the locker room. they Called in the staff who almost called for an ambulance.  I was able to explain everything after a I got myself back under control.  Today I also took my last dose of the antibiotics they sent me home from the hospital with.


Both my pneumonia and my prior issues with my parotoid gland were caused because of my suppressed immune system which is a result of the intense treatment of immunosuppressant drugs and steroids that I am taking.  Currently I am on Prednisone (a corticosteroid and an immunosuppressant drug), cellcept, and prograf both of which are immunosuppressant drugs.  In addition I am taking some other drugs for specific issues related to the kidney transplant but they are benign and I will eventually stop taking them soon.  The main three – prednisone, cellcept and prograf – I am on for life.  The reason for the immunosuppressant drugs is that my body will treat the new kidney as a foreign body that should be destroyed, like a germ you might pick up, so they need to lower the ability of my immune system to fight foreign bodies so that the new kidney takes a firmer hold.  This, unfortunately, increases my susceptibility to all kinds of problems and it is what helped turn my little cold into pneumonia.  So far my new kidney is performing great but so are the immunosuppressant drugs, as evidenced by my two hospital stays in the last six weeks.  This is a big concern to me as I go forward with my recovery.


Despite everything that has happened,  the lowered immune system and the other side effects from these drugs (shaking in my hands, weight gain, intense sweats etc…) I am still very grateful to have had this opportunity for the transplant.  I am especially grateful to my wife, Meg for everything she has done to take care of me, before dialysis, while on dialysis and since dialysis and for making it possible for me to participate in the paired exchange program that got me the kidney I needed.  I am also grateful to the altruistic donor, Patricia, who just wanted to donate just because she felt the need to help someone.  Without her efforts, none of this would be possible.  I feel so much better than I did prior to the transplant and the improvement  compared to how I felt prior to dialysis is incredible.  The worst feeling I had during this whole time was right before I started dialysis.  Going onto dialysis was a difficult decision but in the end it gave me some semblance of a life.  It made a lot of things possible that weren’t before I started dialysis, my blood pressure came down, I had more energy, but I was now kind of glued to my machine.  The problem with dialysis is that it is only temporary and while many people last a fairly long time on dialysis it is, in the end, a slow death.  The transplant has totally saved my life.  I feel like I am a new man.  I am slowly getting back strength that I have not had in years and in time hope to get back to work.  I am not sure how my decreased immune system will react and if I will be able to return to work but I plan to talk with my nephrologist to see what, if anything, we can do about it.

Not So Happy Fourth of July


So what was a cold (sore throat & runny nose) early last week became pneumonia this past weekend and I wound up in the hospital – AGAIN!  Friday night I went to bed with the basic sore throat and runny nose but I did get to sleep.  I woke about 1:00 AM and was in some distress and covered in sweat.  By 3:00 AM I was hacking up stuff and I had a fever of 101 degrees and started to have dry heaves.  By 5:00 AM Meg and I decided to go to the ER since it was pretty obvious – at least to me – that my cold had moved into my chest and I had some major pain in my lungs around my ribs.

When you  drive to the ER you have a vision that they can give you a pill or a shot and everything will be fixed and you can go home – reality is not like that.  I got taken in fairly quickly but then had to wait while the Kidney Doctors and the respiratory Doctors do battle to decide who is to manage my care.  Then the nurse comes back to take my blood to see if my kidney function has been damaged.  Blood draws never goes well for me, but after three sticks they finally have their blood to test and an IV is in me but it is only an IV of Saline since they think I’m dehydrated.  Eventually they decide to give me some morphine (yeah) for the pain and an IV of an antibiotic.  They also bring in a portable X-ray machine and take pictures of my chest.  I also had a breathing treatment but it still hurt a lot to breath deeply.  The antibiotic and the morphine start to have some impact and the pain subsides a little bit.  After what seemed like waiting forever I was taken for an ultrasound of my kidney.  Upon returning to the ER I was told that I did have pneumonia but that the docs were still working out who would supervise my care.  I had another breathing treatment that seemed to work better this time as my pain had subsided (thank you morphine!).  It was finally decided that the Kidney Transplant Team would take charge of my case and I was admitted to the Kidney Transplant ward on 9 West.


I wound up with a very nice hospital room, complete with a couch, easy chair and a recliner.  I think it was a frequent user club type of thing, although the view left something to be desired.  I spent the rest of that day and the next day doing breathing treatments, taking IV antibiotics and resting.  The irony of the weekend was that while in my hospital room in the Kidney Transplant Ward, Meg and I watched the movie “Steel Magnolias.”  Monday afternoon I was released and while I still have pneumonia, it is now going down and I have prescriptions for two antibiotics to get rid of it.  I have a follow up with the Transplant Team on Thursday but now, I am at home resting and hope to be back to normal by the end of next week.


NYC Weekend and Beyond


We had a crazy weekend last weekend and I am still recovering.  Friday Meg and I took the train into Manhattan where we were spending the night and going to the Bette Midler Concert at Madison Square Garden.  It was a lot of fun and we really enjoyed the concert.  We got into the city around 2:30 PM and walked from Grand Central Station to our Hotel on 29th Street with a stop at Macy’s and some shopping for things that were ‘accidentally’ left in the car when Carolyn dropped us at the train station.  Our hotel was nothing special, but it was clean and fairly inexpensive for NYC.  The room was much smaller than we had a week ago in Providence, but it was adequate to our purpose.  We had dinner in an Irish Pub/Restaurant near Madison Square Garden and then went to the concert.  The concert was great, she was very entertaining, funny and she did some great songs.  It was very impressive for a woman who is 70 years old.  Saturday we checked out early and walked up town and did some shopping along the way and ended up in the Times Square Area and arrived in time for the final race of the Greater New York Council’s Pinewood Derby Championship in Times Square.  I didn’t know it was happening it was just a coincidence that we came upon it.  After  Times Square we headed back to Grand Central Station and had lunch at the Oyster Bar before heading back to Connecticut.  Overall we had a nice time, but were exhausted from walking all over Manhattan.


Tuesday I woke with a sore throat, but no other symptoms of a cold or any other issues.  The sore throat persists and occasionally I have a coughing fit that makes my throat hurt even more.  The past couple of days I have been staying close to home, since Carolyn has my car, and mainly doing some house elf stuff – laundry, dishes, cooking etc…  I have gone walking but it is so hot that I can’t walk for too long.  Also the heat, combined with the sore throat makes doing outside work very difficult.  I am going to start to do the lawn late this afternoon when the front yard is in the shade.  Tomorrow if my sore throat is not better I will have to contact the Transplant Center.  They want me to call no matter how trivial my symptoms are so that they can make sure that it is not affecting my Kidney function.  I don’t feel like my kidney is having any problems – my blood pressure is holding (high but holding) and my urine output is the same.  But better safe than sorry, so tomorrow if the sore throat has not gotten any better I will call.