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Holly has chosen to fundraise with Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for donors. Donors can be sure that funds donated will be used only to pay or reimburse medically-related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Donate Now button.
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It's been a pretty rough week. Last Fridsy, I spiked a temp of 100.4 and needed to make the call to one of the nurses in the transplant clinic. Ended up only needing lab work and some rest. Results showed that the CMV was back and a little out of control again. A trip to Nashville on Wednesday for yet another biopsy had already been scheduled, so we knew more lab work would be coming. We knew some results before we headed back home, but not all of them. We discovered that I was severely dehydrated and definitely not drinking enough water in a day. So, I had to drink at least a small pitcher of water before we left and then I was given one for the ride home. Needless to say the headache that I had had since last Saturday was still hanging around no matter what I did. A CT scan was ordered late Friday afernoon, so now we are waiting for those results. IVIG infusions will be starting soon. These will help build up my immune system to help it fight against the CMV. We are still waiting for the resistance testing to comega back to see if I am resistant to the current meds to help prevent and fight CMV. The fun never stops in my world.
Just a quick update for everyone. Today does not seem to be a good day. Not feeling that great and really tired. Not sure what is going on, but I guess I will find out next week when I go back to Vanderbilt for follow up.
Just quick update. I got to see Dr. Miller last Friday for follow up on the lung nodules. I am happy to report that he is one physician that I do not have to see any more. There was no change in my CT from last year, so everything is good. INR has been within goal for almost 3 weeks now, so I only have to go once a week to be checked. My next visit to Vanderbilt will be on the 23rd of August. Biopsy and Catherine are scheduled that day. Hopefully things will continue to go well.
Well, another Wednesday is upon us. So far it has been a crazy week. Monday, I had another INR (Coumadin) level checked. This was again in the range that it should be. My next check in tomorrow, so we will see what that shows. I also had my first iron infusion on Monday, which went pretty well. Physical therapy is continuing. Depending on which one of the therapist is treating me, determines if I am going to feel like I am 80. I like being pushed, but I think they are a little hesitant to push me too far. My next biopsy was moved from 6 weeks up to 4 because of the change in one of my immunosuppression medication and a lowering of the prednisone. I would so like to start spreading these things out.
On Friday, we will be making another trip to Nashville to see the pulmonary specialist. This is just a follow-up to a CT scan I had a couple of years ago when I had pneumonia. Fingers are crossed that there has been no change.
Nothing else is going on. I think I have enough right now.
If there is one thing that I have learned since March is that things will always be changing in my life for a while. Immunosuppressent level is good, however, Vanderbilt decided to cut one of my other immunosuppressent meds in half. So, that being said my hope of having 6 weeks until my next biopsy has been shot down. 4 weeks because of the change in medications and lowering of dosages. So is the life of a transplant patient.
Well, here it is Wednesday. Day 6 on the warfrin for the new clot that was found last week during the ultrasound I had done. Something that I was not expecting and I don't the doctors were either. So now we have 6 weeks of warfrin and hope that the clot resolves on its own. My next biopsy will also be in 6 weeks as well. It will be nice to be able to start to stretch out my testing. I will also be starting iron infusions. My iron is low enough that the only thing to bring it back up are infusions. So, I am waiting for the call to get those scheduled and started. If only there was a pill that I could take for this. What is one more pill. Still only working 3 hours a day right now. I am hoping to move up to 4 hours soon. I still struggle a little bit with fatigue, but that comes from not sleeping well and the low iron. So we will see what happens. Until the next update, remember, organ donation saves lives.
Well, time for another update. I got the results from my biopsy that happened yesterday. 1st is where I currently stand. Prednisone has been cut again, so now I am only taking 2.5mg a day. This is a good thing. Hopefully, all of my other levels will start to fall in place. Some are slightly elevated and some are low. 6 weeks until my next biopsy and right heart cath. Woo hoo. On the down side of my visit yesterday was the discovery of a blood clot that I have under my colar bone. Wasn't there before, but is there now. So, we start by weeks of Coumadin and see what happens from there.
I know that it has been a while since my last update. Things are going well. Last biopsy was almost a month ago and came back with a 1R level of rejection. Prednisone was decreased along with the cyclosporine.
I have completed my regimen of Harvoni. So now we wait for one final lab draw to make sure that I have serum in my blood from my high risk donor. So glad to be done with this. The sied-effects really sucked.
After completing all of my cardiac rehab I was able to return to work. 2 hours a day to start. I also started physical therapy to help build up my stamina and endurance to help me return to work full time soon.
On the down side, my short term disability claim had been denied because they felt that the heart failure and need for a transplant were pre-existing. So, now I have requested an appeal be done. So, after waiting 6 months for the first decision, we now have to wait again.
I have another biopsy scheduled for this Thursday the 20th, so I will have another update then.
Labs came back good. Only a few changes. Creatine or kidney function elevated, so told to hold my Lasix and Lisinopril (1st my blood pressure meds) because of it. Not the first time this has happened. The blood pressure medication can cause this. So more labs on Monday to see if there is a change.
Had labs twice this week. Cyclo spring levels are finally getting back to normal after being up above normal for a few days. One more biopsy scheduled for next Wednesdsy. The best news of the day was that if everything is good, I can go back home to Crossville to continue my recovery.
3 biopsies and a small amount of rejection. Everything going according to plan. Hopefully I will be able to be back home in in the next couple of weeks.
The strength both you and Chuck have shown throughout this is truly inspiring!
Susan Meissner
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Help Hope Live
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In honor of Holly L Licht
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