If the VA had provided proper ongoing treatment my husband would not be suffering from many of his medical issues now.
We need to get treatment outside of the Stratton VA before it’s too late.
On July 1, 2014, I received the text, “Are you sure Daddy will be okay?” Too many times over the last three years, my husband, Peter has been in the emergency room, and our children are in tears wondering “what’s happening with daddy now?”
Now his body is completely out of proportion, with his left calf measuring as large as 32 inches around, and his right calf measuring 26 inches. Because his systemic lymphedema has not been maintained properly, the over abundance of fluid and protein has backed up so that he now has dire, traumatic issues that require surgery. Even after surgery in Utah during 2012, the fluid has returned due to the lack of ongoing therapy, and the doctors at the Albany VA have admitted that his condition is “out of their league.” His abdomen, hands and arms are puffed and “pillow topped” which at times are so swollen that he has difficulty grasping utensils. Occasionally, he’ll awake with extreme swelling on one side of his face. He has severe bouts with cellulitis that can be lethal in his condition if not treated immediately. So nights spent in the emergency room are not uncommon. Peter cannot buy shoes or pants to fit. We need to purchase two pairs of pants so I can dissect one pair for the fabric in order to sew insert panels in both legs of his trousers. Over a two year span, we could not find any shoes or socks to fit him because his feet were so swollen. I had to make shoes to fit by taking an exacto knife to a pair of oversized Crocs, and improvise to make a tongue and shoelaces. Finally, in March 2013 the VA gave him a pair of proper shoes. This is a man that was an active athlete back around the time of our marriage and loved to weight train.
For several years, the VA Administrators have only allowed occasional, minimal lymphedema therapy treatments outside, as well as within the VA Hospital, with major gaps and delays in treatment between sessions. We have had to wait anywhere from 2 weeks to 8 months for the VA Administrators to decide whether or not to reinstate therapy. This means that his condition backslides to a point that he is in pain, and his lymphedema is worse than when he started therapy resulting in a see-saw effect. When he did have therapy at the Albany Stratton VA Hospital, the therapist, openly admitted that she has never treated anyone with LF or Elephantiasis; she does not do MLD; she does not know how to correctly treat the extent of his medical needs. In fact, she asked Peter how to proceed. He had only 8 appointments with her between 5/1/2013 through 6/28/2013, and her bandages were not administered properly which caused him pain. She told him if he didn’t show progress he would be “thrown out of the program.” The therapist also informed us that he needs to do this therapy himself. The issues with his legs, arms and abdomen are such that he can’t reach his ankles, no less perform his own treatments.
In March 2014 we were informed all outside therapy treatments have been denied. We’ve been told that the only lymphedema therapy that they will offer is to be provided by their in-house therapist. The same therapist as described above. We are horrified to think of where his condition will go from here if he has to go back again with a therapist that admitted that she doesn’t know what to do. We’ve written to our Congressman and Senators, as well as several other elected officials. The VA tells them he is noncompliant and declines the treatment that they offer. He has not declined treatment, but as we’ve seen in the past, if it’s not the right treatment, it will be a detriment to Peter’s health. Prior to June 30, 2014 we requested the Stratton VAs proposed treatment plan in writing so there would be no confusion on anyones part. It took over two months to receive the documents that we requested. Even then, there was no treatment plan, only a series of concepts that were general or in direct conflict with anything that the specialists prescribe. Ask yourself, “How would you feel going back to a doctor or therapist that are not versed in your medical condition or had administered lacking and improper treatment in the past?” This is the only option that this veteran is being offered through the Stratton VA.
Peter needs and is desperate for the proper treatment for the extent of his declining condition. Through extensive research, we know of doctors and therapist that can and are willing to do the right treatment. We are trying to raise funds to send him to an in-patient facility that specializes in cases of Filariasis/Elephantiasis. Thank you for taking the time to read this story.
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