12/18/2011 – Day 51

Well another week has passed and while I don’t have much to report, at least none of it is bad. I’m feeling great and I’m not having any health issues. Blood sugar levels seem to be getting a little better so my apprehension and concern has lessened a bit. Will know more this Wednesday when I go for my scheduled clinic visit.

This past Monday I went for my second evaluation for the cardiac rehab program at St Charles Hospital and began the program Wednesday evening. They are treating me with ‘kid gloves’ and intend to bring me along slowly. Pesonally, I feel a little embarresed as I know I can take a bit more of a strenneous regimine. I start on a treadmill for a six minute warmup at a 1.2 mph pace, progress to 1.7 mph for the next 10 minutes, and then cool down for the last six minutes at 1 mph, all with no incline adjustment. Way to easy. I then progess to the next piece of equipment called a Nu-Step on which I exercise my legs and upper body for another 10 minutes with no adjustments for resistance or pace. Just freestyle it and try to maintain a steady pace over the 10 minutes I’m on the device. The next machine I don’t know what it s called, but you are sitting on it and holding on to it’s handle bars and rotating your arms forward in a circular motion for 3 minutes and then reversing the motion for the last 3 minutes. Again, no adjustments for resistance or pace. The next 30-40 minutes was an educational talk about cholesterol by the lead therapist with a question and answer period after. That was it for the night.

My schedule for these sessions is every Monday,Wednesday, and Friday evenings at 5PM for I believe a total of 30 visits. My next session was the next evening, Thursday, as there was no rehab for Friday evening as a Christmas Party was scheduled for the Hospital employees. The exercises were a repeat of the night before, however there was no educational talk. Instead, I did some weight training using hand weights – simple curling, stretching, and resistance exercises. Hope they up the ante a bit when I go back for tomorrow’s session.

  That’s all I have for now. Thank you to all who have taken the time to read this, and perhaps left a comment___________________John

 

12/11/2011 – Day 44

As noted, today marks day 44 post transplant, and all is well and good. Had my scheduled clinic visit this past Wednesday and all the test results and the biopsy came back ‘A’ ‘OK’. I’m happy – no signs of rejection and blood levels where they should be. Like I’ve said before, I just love getting good news as does my Cardiologist, Dr Lee! She has ordered adjustments of several of my meds as a consequence. Also, since I’m still experiencing wild fluctuations of my blood sugar, she has told me to up my Insulin shot at bedtime to 10 units. This one issue is just driving me a little crazy even though every one is telling me it’s a result of the medications I’m taking. Maybe so, however it still does not make me feel comfortable. The swings in the testing results are to wide in my mind and make me feel very apprehensive. I’ve adjusted my diet and try and do all the things I should do to control it and I’m not seeing any change.

Other than the above, the past week has been uneventful, save for the fact I feel myself getting stronger by the day. I finally heard back from Victoria, the cardiac rehab coordinator at St Charles Hospital in Port Jefferson, and had my first evaluation there this past Friday. I go for another one tomorrow after which I will finally begin the program. Looking forward to it actually as I do need to build back my muscle tone and upper body strength a bit. Losing 45 lbs. in weight after the LVAD surgery left me looking emancipated and weak. While I have gained some of the weight back, I’m comfortable where I am at now and want to maintain it at this level.

While we were getting ready to leave the Hospital Wednesday, Jane ran into the family of a young mother of two children who had underwent a transplant of both her lungs about the time I underwent the LVAD surgery. Her mom told Jane she was still there and not doing well. In fact she needs to undergo another transplant as the first one is failing her. Her condition is not life threatening at the moment but it is also not good. Please offer up a prayer for this young woman and her family who are quite literally going through hell.

‘Till next time, thank you for reading this__________________________ John

12/3/2011 – Day 36

12/3/2011 – OK! Today marks day 36 post transplant and I am feeling just great. There was no clinic visit this past Wednesday as I am now in the bi-monthly part of my schedule. Next visit is 12/7 and then 12/21.

Continuing from my last post on 1/26, I noted that men who receive this device have some options available to them in how to carry around their batteries and system controller – the Bosco vest, 511 Tactical T-shirt as well as a few others. As for the women, I’m not aware of any particular options for them. I’ve only met three who have the device and they all used a pocketbook like carry bag worn over their shoulder to deal with the equipment. I’m guessing that women of a younger generation might possibly wear a 511 type shirt when they dress casually. When they dress a little more formally, I just don’t know.

In my comments about living with the device day to day, I said that it becomes somewhat routine and really is not to difficult to deal with. However, that does not mean it is normal. While it may seem to some to be just that, in my case I never felt it as being normal. I was always aware of it’s presence and the care I needed to take with it to get through the day without any problems. Again, each individual will experience and react to the device in their own way.

This past week has been uneventful other than the fact I am getting stronger day by day and am quite pleased and thankful that all is going well. I’ve been having some issues with my blood sugar levels since I had the surgery that cause me some concern (I don’t want to have to deal with the possibility of diabetes). My Dr’s feel it is a result of one of the medications I have to take (Prednisone) and are watching my test results closely. For now, they have me testing my blood glucose level four times a day. According to the results, I then give myself an insulin boost injection with a NovoLog pen of so many units as noted on a sliding scale chart provided to me by Dr Lee. Also, at bedtime, I give myself a regular dose of 5 units of insulin using a Lantus SoloStar pen. So every day I’m pricking my fingertip or palm of my hand with a needle four times and also taking up to five injections. This past Thursday, Jane and I participated in a support group meeting at Columbia Presbyterian concerning physical therapy for CHF and Heart transplant patients. It was a very good discussion and we met some very interesting people. One gentleman was post transplant 19 years. Another was 5 years post. What they had to say about their experiences reaffirmed my feelings of how lucky and fortunate I am with my own experience. Some of the things these two gentlemen went through I hope and pray I will never have to.

That’s it for now and thank you all for your good wishes and prayers. ‘Till next time __________________________ John

11/26/2011

11/26/2011 – Hi all! As you may know today marks four weeks post transplant for me and everything is just fine. This past Tuesday I had my fourth biopsy and the results were all OK as well as the results of the other exams. I just love good news.

Today I would like to talk about what it was like living with the LVAD at home after discharge from the Hospital. For those who aren’t aware, LVAD stands for Left Ventricular Assistive Device. This device helps the left side of the heart to pump the necessary volume of blood through your body to keep you alive. Pictures of the device are shown below. The wire on hanging down from center is called the percutaneous lead. This shields the wires that connect to the little motor that runs the device ( that’s the black bulbous looking piece in the middle) and leads through your skin to a little computer called the System Controller about the size of a fanny pack that is worn around your waist almost like a belt. This computer regulates the speed and function of the motor of the device. It’s powered two ways, either by batteries ( making it portable), or by direct connection via a tethered cable connected to a System Controller via an electrical outlet (your walking range is limited to about 18ft). This mode is for when you go to sleep as you should not be on batteries during sleep. The long tube leading off the motor to the left gets attached to your aorta artery and the remaining tube to the right attaches to the left ventricle. The surgeon implants the device just under your skin, below your rib cage. The percutaneous lead can exit either on your left or right side. The surgeon makes the choice. When using the device port-ably, the batteries are carried in holsters that are attached to what I will call an X-brace harness. When you leave the Hospital and start really living with the device, this harness becomes quite tiresome and burdensome. The batteries have a tendency to swing freely and becomes a bother. There are alternatives and I used two. One is called the Bosco vest, created by a seamstress for her husband who had the LVAD surgery and decided to make a little business with the vest and provide it to other LVAD patients. Our ex-vice president, Mr Dick Chaney owns and wears one. The other was purchasing a 511 Tactical shirt meant for undercover police work. The pockets on this undergarment holds the batteries snugly to your body and is very comfortable. Both of these alternatives can be found by Goggling on the Web.

When you are implanted with this device, you are given one of two designations for having the implant. The first is called the ‘Bridge to Transplant’; the name says it all. The other is ‘Destination’, which means you will need the device for the rest of your natural life as you are not suitable for a heart transplant under the present rules and protocols for the surgery. Not very pretty, but it is the reality at the moment. I just Thank God I was designated as ‘Bridge’.

Day to day, living with the device becomes very routine and is really not that difficult to deal with. You learn very quickly how to take proper care of the device and it’s supporting equipment, the power module and battery charger. How to properly clean the exit site of the percutaneous lead becomes second nature. You begin doing those things you used to be able to do before becoming so ill that you needed the LVAD surgery. Your life becomes more like it was and becomes more routine. However, there are limits. For instance, I couldn’t sleep on my left side. I had to either sleep on my back or a little on my right side in order to get a good night’s sleep. I was also limited in my recovery due to attacks of the Gout, which I have no family history of and had never experienced before in my life. After going to several support group meetings, I learned that this was a common occurrence of people who have had this surgery. Also learned of several ways to deal with it. Since the heart transplant though, I haven’t had a recurrence of the problem. When I did have the attacks, I couldn’t walk and was laid up in bed, so my walking therapy was Nada. Dr Lee, my cardiologist, had wanted me to get to a certain level in my walking, but I was never able to get there. Actually, not to long before the transplant, I had regressed a bit and was not where I should have been physically. So what I’m saying is there is good and bad when you have this surgery. Just because you have this new device everything is going to be all OK?  I don’t think so!  There are going to be a lot of setbacks and missteps along the way. But the alternative to not having the device is not very pleasant to think about.

Well, enough for now. I’m getting tired and my thought process is starting to run a little wild. ‘Till next time_______ John.

 

 

November 19, 2011

Hi everyone! Today marks three weeks post heart transplant for me and everything is just fine with me. This past Wednesday I had my third biopsy and all the results came back OK. Love good news.

Today I would like to write a bit of what it was like living with the LVAD for the five months leading up to my transplant. The procedure took place on May 27,2011 and was performed by Dr Yoshifumi Naka. Coming away from this surgery was very painful and I suffered a bad experience coming out of the anesthesia. I was awake but there was evidently a lot of the drug still in me and I became delusional. I made everyone’s life around me just miserable. After it was over, a very caring and knowledgeable nurse sat with me and explained to me what had happened. I was mortified. From day one I had tried very hard to keep things on the light side and be humorous as well as being attentive to what was going on around me. It wasn’t easy but I really made the effort to be that way. This experience with the anesthesia just killed me. I couldn’t apologize enough to all those people around me. This was to become my number one fear when it came time for the transplant.

So as I said, I came away from the surgery in a lot of pain. Your chest area is wrapped with a compression fitting which is just fine and quite comfortable until they have to open it up to clean you up or examine your bandages. Then it feels like your guts are spilling out all over and is very uncomfortable. They also encourage you to cough up and use a suction device to break up the Flem in your lungs to help prevent pneumonia. All well and good, but that cough you make is quite painful. I did try to do it but found it to be to uncomfortable. I found out from one of my night nurses that my bed could vibrate and/or shake up and down. When I discovered this, I asked them to ‘shake me up’ every chance I got. This, I believe, did more for me to break up the Flem in my lungs than coughing could ever do. Funny thing, my nurses agreed with me on this.

As was expected, each day I began to feel better and see improvement, even if in small and unusual ways. Gradually, the pain subsided, I’ll say over the next 2 ½ weeks. By that time I could finally pull myself up without any assistance and was ready to be transferred upstairs to the step-down area on the seventh floor. Up there, I was in a private room for two days before being moved down the hall to a semi-private room with my new roomy, Vinny Puccia. We hit it off immediately. We both live on Long Island, he in W Islip and me in Mastic. Our age differential is two years and we share quite a bit more together. Vinny received his new heart about a month before I did, so I guess we shared a ‘lucky’ room.

For the next week and a half, my time was spent doing therapy with or without my therapist, and generally doing those things that my body was telling me I was ready to do again. I’d wake up around two in the mourning and I would be walking through the floor getting my exercise in. I would head into the stairwells and go up and down several times to help build up the strength in my legs, all the while being very aware not to over exert myself or become dizzy or short of breath. Evidently it paid off and I was released from Hospital June 20, 2011.

The next time I write, I think it will be about living with the LVAD at home after discharge and my experiences with the device. It should be some interesting stuff. Goodbye for now. John

Two week Anniversary

11/12/2001 – Happy Anniversary to me! Today marks two weeks (15 days) post heart transplant surgery for me. I really don’t have much to report today other than I’m feeling great, getting stronger by the day, and am able to do more and more for myself. I’m extremely great full and happy in the same moment as well as being more at peace with myself. Just wanted to share this with everybody and say thanks for all the prayers and good wishes I’ve received. I’ll write again soon. Bye for now. John

Day After Discharge

11/9/2011 – Had to return to Columbia Presbyterian Hospital this morning for the first of my out-patient clinical visits. We left home at 6 AM and got to the Hospital at 8:05 AM. We went to register with the Center for Advanced Cardiac Care to get the required approval and requisition papers. A clinical visit comprises of several exams, a full blood-work workup, an EKG, a chest x-ray, a physical exam by my cardiologist, Dr Sun Hi Lee or her NP, and finally a biopsy. After registering, I went to have my blood drawn. We waited for approximately ten minutes before being called into the phlebotomist station. While there, she also performed the EKG. We then headed upstairs to my cardiologist office for the clinical and physical exams at 9 AM. After finishing with her, we then went again downstairs to have the chest x-ray performed. We were done with all this by 11 AM so we went to the main lobby for a belated breakfast. The only exam left was the biopsy which was scheduled for 2 PM so we had to kill time. We relaxed in the main lobby, had lunch at 1 PM, and went for the biopsy at 1:50 PM. The procedure took about a 1/2 hour and so we were on our way back home by 3:30. Sure beat yesterdays experience. Got back home at a decent hour tired, but not drained, like Wednesday. That’s it for now. I’ll be back with more soon.

The Journey Begins

11/08/2011 – Today I was discharged from Columbia Presbyterian Hospital and allowed to go home; just 11 days after receiving the new heart. I’m quite simply feeling in great shape for the first time in, I can’t remember,  many years. We live in an amazing time of world history, the pace of new technologies and medical advances is quite extraordinary. The normal person would think that undergoing a heart transplant would involve some level of pain. I came out of this with virtually no pain at all. Nada. Not even a hint of something wrong. I’ve been truly blessed and am extremely thankful and humbled from this experience.

The day was long, as the discharge procedure just took forever, literally. I had blood drawn, been seen by the Dr.’s and a chest x-ray done by 9AM. Jane and John Jr were up to my room about 9:45 AM. The transplant coordinator came in to do her thing and wound up going back and forth getting various material and approvals with much time wasted. She went over many topics of discussion, including the how’s and whys of my medications, my diet, my new lifestyle, etc, etc. It just went on and on. At the end, my nurse came in, removed the telemetry device and IV line. She gave me her discharge instructions and I signed off on several papers. I was now officially out of there. We left the building at roughly 4:15 PM. As I said, it was a long long day. When we finally got home it was close to 7 PM. I was truly exhausted.

 

Sabrena & John